Moon Phases: the Life & Evolution of Me

Update... and a rant filled with swearing. Sorry. Don't read if easily offended...

2009-08-08T19:56:00.000-07:00

So, for those who are interested in the variously interesting but mostly boring details of my life...

I was offered the job I really wanted on Wednesday afternoon, probably not too long after posting my last post, haha!

However, still fighting off this stupid ear infection thingy and wasn't really into much typing. Just up and down from resting to listlessly looking at Facebook, as if it might offer me some company, while I was home alone - fevery and miserable, unable to eat - with my son away visiting his dad for a few days.

Ugh, I am not often so sick and it was kinda scary and mostly sad being alone while I felt so crap. Creepy, too, because my cat would sit with me and everytime she'd hear a noise, she would become super-alert, listening to what it was (she was also hoping every night it was Boy Child coming home from his late shifts at the movie theatre. Poor kitty. Poor mommy!). Creepy because I either couldn't hear the noise at all with my blocked up ear or I could - faintly, but not to tell what it was. Was it someone trying to break into my house? UGH. Hard not to feel vulnerable when you're, well... vulnerable. Fevery, confused and weakish. Gross.

So it was a very nice thing to hear the friendly voice of the manager calling and asking if I would like the job! Also, apologising for taking an extra day to get back to me, but that they had to get ahold of my references - who LOVE me. In fact, she began quoting a couple of things she'd written down from the references like "Exceeds expectations". Yay, me!

I am SO amazingly excited to not only find a job that meets my difficult current needs plus suits my qualifications and interests... it also pays pretty darned well. In fact, with my last two jobs, I'd say I've gone up around 30% in hourly wage each time! (That's a rough guesstimate, but whatever!). That's from the 3+ years ago since I hurt myself.

Considering this, I don't think it's fair that workers' comp continues to pay based on what I was making at the time of injury. OK, I can see why in a way, but they're only bound to make up what I'm not able to make, I think. If I can make nearly as much now in around half the time... well, my experience has improved my position but my wage loss is moot! Does that make sense? Probably not entirely, but I hope you get what I mean... ugh, head still not totally clear.

OK, if I made 800 beans* per month (work with me here) at my old job for 30 hours per week, but I'll be making 680 beans per month at my new job for 14 hours per week... I've not increased my total income, but made massive gains in my hourly wage. Make sense now? Oh, crap, I've made it worse, right?? (*Note: beans do NOT translate into dollars, Canadian or otherwise, by any reliable means. Just trying to give a rough example. Probably pretty rough. Don't ask me to do math reliably when sick. LOL.)

Anyway, back to the job! So, I will start next week. It's just 14 hours per week (that's two days) as a job share position, which is about all I expect to be able to handle at this point. Note I say expect. Fact is, I'm kinda scared, really. Scared of the stress of just working (getting to/from, the long day that's not that long to most people - two, 7 hour shifts/week) increasing the pain, scared that I have nothing left to give up in terms of "spoons" (see The Spoon Theory if you're not familiar). In fact, a while ago, in order to bring friendships into my life (nearly non-existent since my injury and subsequent development of CRPS) I realised that something had to 'give' for me to do so. I just didn't have enough energy/hours in the day.

And that's what the spoons represent: energy/hours. I might have enough hours to do it, when you realise "Oh, she's only going to be working 14 hours per week." Sounds like 3 days left to clean the house, see the doctors, physios, do my stupid exercise regime (which I've become convinced are not doing much of anything - the stretches are helpful, though), be a mom to my son when he's around... maybe have some alone time... hell, have a 'special' relationship, maybe?

Uh huh. Then you begin to factor in the need for more sleep. A LOT more sleep. And then there's the days when you're in extra pain and it's a 'write-off' - i.e. you're on the couch, watching TV reruns, trying to distract yourself from the pain... not exactly productive. It's not cleaning my kitchen, that's for sure.

IF I'm 'lucky' I'll be able to get through the two back-to-back days (they asked my availability, I said I was 'free' - I shoulda thought that better, but wanted to have a chance at this). I mean, assuming the other person whose job I'll be sharing probably wants to not have 3 afternoons off per week, but two real, whole days. And really, spreading 14 hours into 3 days probably just means I'm tiring myself out THREE days per week, by the time you get there and all...

This will mean that those 2 days will involve all my will and strength to get to work on time and level-headed, keep my pain managed well enough to get through the whole day while serving my clients with the care and service they deserve and get myself home safely and make sure I rest well. It will not leave time to make dinner that involves much effort, might mean no visiting people those nights... and it may well mean that I spend the next day or 3 recuperating from my 2 days of work.

I'm freakin' terrified because having some new friendships in my life has been what's kept me going. Having the energy to spend an afternoon or evening with a friend once every week or two tends to mean that the housecleaning that I *might* feel up to doing, doesn't get done.

Sure, I know. I'm sure I could manage a little here and there. Frankly, maybe I'm just lazy. OK, I kinda hate housework, but while I'm not a 'neat-freak' I prefer not to live as a slob, either. If I lived on my own, it might be easier, but there's a 17 year old male here who still finds every thing 'extra' I ask him to do like some sort of torture. In fact, he told me recently that I don't do anything, that I expect him to do everything and I'm just using CRPS 'as an excuse'.

{warning, cursing and swearing begin here. sorry.}

FUCK, I hate teenagers, man. WTF? I thought I tought him better than that. He's revelling in his carefree life (which is angsty teen-time sometimes; they're so 'emo' these days, ugh) as well he should be. But I'm sorry, I didn't ASK to be injured while I was doing my fucking job! And doing it damned well, thankyouverymuch! I sure as fuck didn't ASK to have some bizarro pain disorder that no one can see, and many don't BELIEVE in, happen to me and oh YEAH, it may be like this for the rest of my damned life! FAAARGH.

So, yeah, while I'm being "lazy" and enjoying MY carefree and definitely pain-free life, I laze my days away watching soap operas and having an affair with the milk man... whatever.

And I feel like a big fucking failure because my house is messy. Hell, there's still a few unpacked boxes but after EIGHT months of living here, I've now got bunny-sized dust bunnies growing around them and other stuff growing near them like fungus (note: not actual fungus, just mean junk accumulates more junk around it). But I've been BUSY since March, 1st with the hospital pain program, then the next month at the workers' comp version. BTW the hospital one was 3 afternoons per week and they recommended that you being with just the class then add other things so as not to overdo it. Ahem. The other program was 4 hours per day, 5 days per week. "To tolerance", they assured me, but it rather seemed that you were expected to be there. And that 4 hours was the program and then they figured you'd take a leisurely hour-long lunch. Really, to me that just means I'm out for another hour in my day... when I'm not resting or cleaning those dust bunnies, which have been breeding... like bunnies.

I spoke to the occupational therapist about this at the program. She asked about things around the home and I told her I just wasn't doing anything because being there even 3 hours per day was exhausting. I was having increased pain anyway coming in, then add more activity and poking and prodding... plus messed up sleep from meds... and on and on and on...

When was I suppposed to find all this time and energy to keep my house as sparkling clean as I know it's 'supposed' to be (and let me be clear: right now, I'd be happy with tidy-ish and clean kitchen and bathroom on a regular basis.).

I can recall having a similar dilemma while a single working parent with a younger child - i.e. doing more full-time mommy stuff. Working an 8 hour day, plus travel time, including child care to and froms, etc. etc... Oh, yeah, on my two days off I ALWAYS felt like getting up early and spending the entire two days cleaning and doing laundry! Yeesh. SOME women do this and I say "Good for you, sister! Can you bring your boundless energy and a mop over to my place when you're done? I could use a hand!"

Yeah, ranting calming now. Sorry again.

So, back to the job. Workers' comp will be thrilled, I'm sure. Yay, less money we have to shell out! And she's made an effort. WOW. OK, people, so while I'm out participating and making contributions to society, can someone contribute to cleaning my bathroom and mopping the floors? The look pretty clean, but I haven't done it since we moved in 8 months ago (just the kitchen and bathroom!) and they could use a wash. Ew.

And I just don't think that, despite the great hourly wage, my 14 hours per week is gonna get me far with hiring a cleaner to do what I cannot manage myself.

I'm scared I won't be able to manage the job with the pain and the hours, let alone worrying about my increasingly sloppy house to which I've become reluctant to allow people to visit...

SIGH. Why does it always have to be this hard?

Recent Developments

2009-08-05T10:08:00.000-07:00

... in the oh-so exciting life of Lisa have included of late:

1. A bona-fide Job Interview - for the job I applied for a month prior! I assumed I didn't even make the interview 'cut' and was duly disappointed. However, they rang me a week ago Friday asking if I was still interested and would I like to come in for an interview? I said "Gosh, WOULD I!" The woman on the phone (the program manager) said "Yay!"

Um, yay?! Why was SHE saying Yay?! I was doing the happy-wiggle dance in my seat when I got the call, which BTW came while I was in the midst of giving my friend a pedicure for her birthday! LOL. So she got to hear the news first!

Anyway, right, interview. For a local disability resources centre in town; I'd be a resource worker, essentially, assisting others to locate and obtain the supports they need and secure funding where possible. And yes, this does sound familiar because when I was looking to get my scooter and walker, I came across this program and decided to go through them myself. In my case, I was already finding what I required to get the funding, but wanted to essentially become one of thier numbers as I know it is basically a pilot project of the government - i.e. the more people they can track to see if and how they're getting the services they need, the better for their information and for further funding of the program.

As with more and more jobs these days, I was emailed 3 sample case studies to report on, giving me a chance to show my critical thinking, research and resource skills and knowledge, as well as an optional sample funding letter, which I chose to write and include. DUH - of COURSE I'm going to give them every bit extra I can!

And I feel like I'm at the Oscars saying "It's an honour just to be nominated!" but I really DO feel honoured to get the interview! Really! Even if I don't get it, it will be valuable experience - that first interview in a job search always seems the hardest somehow. Also, I've had practise with the case studies... good refresher, too.

OH, I guess I could tell you about the interview, gentle readers! Well, I was of course nervous, but isn't that always the way? Besides, that just indicates interest. The manager was nice and friendly and said we'd 'just have a conversation and it would be 'fun''. Um, ok. LOL. Always easier to say when you're not on the spot, so to speak!

Backtrack a bit: the job is a job-share position, at 40% time - which would be 2 days per week, or however the other person and I sort it out. The position runs through until the end of January next year, but sounds like it might be extended, pending both the circumstances of the program and the person who fills the position, normally on a full-time basis.

The pay is really quite good, especially for someone like me, used to working for non-profits! Heck, I think it's pretty darned good for this city/province, unless you're some techie person or work in oil & gas or something. Yay!

And yes, the job posting encourages applicants with disabilities to self-identify, as per Section 41 of the BC Human Rights Code. Yeppers - I have a better chance than the surely tons of other social worker-types who may not be disabled! Well, sort of, lol. Surely doesn't mean I am a shoo-in. But I do well-fit their criteria in terms of experience and knowledge, so... will hope it all works out - which also means to me that if I don't get this job, that there will be another great one down the road.

What else?

2. Well, after speaking with my pain psychologist at the rehab/pain program of my desire to try camping or something now that I have a vehicle and so on... or perhaps start with a day trip somewhere, just to get away and relax a bit. She encouraged me to do so; in fact, she said her 'prescription is...' for me to do just that and to have a lot of fun, perhaps take a special someone along for the ride, lol.

So, either way, I was gonna do this, if just for the day. Well, not just one trip, but work my way up to a couple nights' camping maybe? Just to start somewhere, see how I manage, how I can pace myself, how much driving I can handle in one jaunt (my van is REALLY comfy to sit in, with puffy, cushioned leather seating, power-controlled on the driver's side for optimal adjustment - and boy, do I use that! Also the seats in front heat, which is a good heating pad substitute...).

Talked to my friend about it and we decided to make a day trip and I looked into potential places to travel within a day comfortably on our large, gorgeous island. Would we drive up the west coast - rugged and largely unpopulated, but also short in services/comforts for us gimpy folk? - or the east coast, with the major highway that runs Vancouver Island, with many towns of varying sizes, still gorgeous views, beaches and parks, but also the conveniences of stores and such of all types. We chose the east coast and started our trip up early Sunday morning.

It was a beautiful, sunny day with brilliant blue skies. I tried something new with my van seats - the back row is 'stow-and-go', which folds the seats into a well without having to remove them, the back area is flat and cargo ready! That's been used a lot already - very handy - but I had another idea: doesn't the 2nd row of seats (two Captain's chairs, just as puffy and comfy as the front seats!) come out altogether? Yep, they DO and pretty easily. I folded them down but had a friend lift them out before the day of the trip (not very heavy, he reported, but too heavy for me to manage safely). This left the HUGE area between the front seats and the rear ones wide open... and my idea was that, if my back hurt from the driving that I could stretch out on the floor of the van for a bit when we stopped at our destination. Even grabbed a couple of sleeping bags for padding, realising that one bag rolled up would make an ideal footrest!

So, armed with my soft-sided cooler which came with a sturdy wheeled dolly-style affair, and my two new beach chairs which I happily found recently - they don't hurt me to sit in and are sooo comfy! - we were off!

We decided we might drive as far as Nanaimo (less than 2 hours away), where there are many beautiful parks and such nearby. We thought we might even continue farther north ("Up-Island", as we refer to it here) to Parksville which, as its name implies, is chock full of parks and gorgeous sandy beaches, including the always popular Rathtrevor Beach Provincial Park (if you look at the link, scroll down to note the disabled access - yay), where the tide goes out so far, you can walk for a kilometer and still maybe have water up to your waist at best! So we went on to Rathtrevor as the beach/park area is very close to where you can park - little walking required.

OK, so I didn't go walking on the beach, actually; exhausting and painful for me. There are also some hugely tall redwoods in stands/groups near the water, which we chose to plunk our chairs under as the day had grown quite hot! I was feeling ok from the drive, but with a lack of sleep from the night before (including waking up to an oddly-sore ear, wtf?) I was pretty tired and so fell asleep promptly in my comfy beach chair... and snored away for a good hour or so. Sheesh. I did take a couple of pictures of the view from my chair looking waaaay up. See? Pretty! Sure, they're trees, maybe you've seen them before as I have, but it is the views - and the company, of course - which I will remember from that day:

Looking waaaay up!

... the view to my right... so pretty...

Those tree tops are so far up!

We took our time heading home, deciding to arrive in Victoria for dinner so we wouldn't be too tired out, then had dinner and watched a couple of movies and laughed a lot.

The whole day seemed like a mini-vacation for sure, and at the end I didn't feel anywhere near as tired as even my usual jaunts to Vancouver (requiring ferry trips) leave me feeling. All in all, the day was quite a success and I felt productive and happy - productive for the 'new me', which is not to say that other people (TABS, I guess) might find (i.e. we passed on Bungy Jumping, River Tubing, hiking several kilometers to see a surely-gorgeous river and falls, etc.) BUT feeling good at the end of the day as well as the days after - now THAT is a success!

To come soon (hopefully): the results are in! Did I get that job? And what about this special friend I've mentioned twice? Hmm, not sure yet on either. But I do know it's all good. :)

Tempus Fugit... and a Lucky Woman, Indeed

2009-07-14T11:35:00.000-07:00

Or time flees (flies is used more commonly and makes more sense, yes?!). As in, omgosh, has it REALLy been close to two months since I've written?! Madness!

Well, what has Lisa been up to?! Lots, it seems... well, to me.

First, I completed my rehab program at the pain clinic, after spending what must have been 2.5 months or so bustin' my... leg. Worth it? Yes, for as I write in my last post, I can walk sooo much better. No, the pain didn't disappear in the last month but now the doctor, instead of saying "let's get rid of your meds!" is on board with me (I'm nothing if not persistent!), helping me to remove one med which might be contributing to heavy fatigue; it certainly has another less than pleasant side-effect, so I'll be pleased to see it gone!

Also, I've discovered another breakthrough medication that, gasp! works well for me, doesn't make me dopey, sleepy, grumpy or doc... and has a good side effect (opposite to the above-mentioned bad one). YAY!

Right now, I continue to go to the clinic twice per week for physio ('maintenence' and free gym use!), see the doc their every other week while working on med changes and will see the psych once per month. This is for a couple/few months more, I believe.

Otherwise, I need to look for work now. Good things happened prior to leaving the program! I met with my case manager from workers' comp AND the vocational rehab person (which means that I've already been referred to them and we/I don't have to fight for that) about next steps for me. They were surprisingly nice - especially voc rehab guy (too bad he retired end of June so I won't get to see him again. However, he pre-approved funding for me to take a course in Excel as I showed them a job I applied for which would be ideal - and like most desk-jobs, they expect a certain level of proficiency in Microsoft programs... and Excel is the one I've used the least. But this is great, having them pay for the course. Guy called it a 'no-brainer'!).

Also, during that meeting, they not only were surprised and excited that I was looking at working and checking out jobs myself, but they seemed fine with it being stated that it would be part-time work, at a desk job. I think they are perhaps expecting me to cry loudly "Disabled! Can't do a damned thing!" or something. Well, I can SO; with the meds tweaking, I hope to lift some of the brain lapse experiences; episodes which others assure me are not noticeable, but *I* notice them! (I'm talking about when you can't remember something, which happens to all of us... but when it's little things, simple things, things you REALLY KNOW... and it happens a LOT, then it becomes abnormal and kinda scary).

Hmm, what else?

One of the other pain program grads with CRPS and I spoke of having a support group here in town for CRPSers. There was one, listed with the Canadian CRPS site http://www.rsdcanada.org/ but it was defunct. She contacted the person who was running it and they are interested in reforming it if there is sufficient interest. We have some ideas to contribute and this person is apparently interested, so we'll be working on that... I say we, although I've not yet done anything, I intend to, lol!

Recently, someone I am newly friends with has come to be someone I really enjoy spending time with. A lot. A special friend, one might say. I might also say other things, but this isn't a typical situation and also... special friend might have come across my blog (probably why I debated listing this on my Facebook). Not that I have anything to hide, but am currently reluctant to discuss for various reasons. I decided to mention at all because our time together has brought me a good deal of happiness recently and after having many very unhappy times in the last few years, accompanied by physical and mental pain... and me sitting on the side-lines of life too often, I've determined that life is too short to not grab any chance at happiness that comes my way. And to thoroughly enjoy myself, too! So, yay to happiness in its many fine forms! :)

Whether this person remains 'just' a friend or something more comes of it, I'm still happy to have them in my life. And that, to me, is the point of life: finding happiness and love, however it looks, where and when you can. Not a desperation thing, mind you, but a genuine appreciation of LIFE and being ALIVE! I am very alive and for some time, parts of me have not felt that way...

OK, now I'm saying too much, without explanation. Maybe you can imagine and maybe it doesn't matter. I hope the gist of what I'm trying to say is getting through: that chronic pain has caused me to have a new appreciation of life and I want to live mine, not watch it go by, fearing being hurt physically or emotionally.

I know in my heart and mind that I'm worth it. :) Remind me if I come back one day, all sad and shit, LOL.

This all comes from the Choice I made some time ago, pre-diagnosis, pre-any medication for the insanely severe pain I somehow thought I needed to endure... when I began to think that not being alive was the only way the pain would ever stop and that almost seemed a viable option - despite the fact I didn't really want to die, I just wanted the freakin' pain to END.

I could see a road ahead and it was dark, bleak and filled with despair and I knew then and there that if I did not consciously choose to fight and fight some more, that would be the road I'd end up on and the end wouldn't be pretty. I chose to fight, I chose to appeal time and again to workers' comp for help. I kept going to docs even when they eventually told me what I had was without a cure, and did not respond well to any kind of treatment... wasn't even well-served with meds... I didn't care, I kept bugging docs, looking for better answers.

And it paid off! I succeeded at the tribunal level, forcing workers' comp to reopen my case. I also got myself into the hospital pain clinic with no wait (except for the holiday season to pass) and then into the other pain clinic which I've just completed.

I am a happier person, coping far better than earlier this year, I'm told (of course, getting a massive back-pay cheque which paid off my debt and purchased me a pretty new vehicle helped alleviate TONS of stress!). I've made new friends from both pain clinics and it's such a great support to spend time with others who get what it is like to live with intense, chronic pain. It's something I've only otherwise experienced here, by some of the lovely folks who've dropped me comments on my musings and ramblings.

I am developing intense gratitude for the people in my life, both 'in person' and here, online. Each person has been a part of my own personal growth as I continue on this journey. I know it's not something one arrives at one day: complete peace, the 'self-actualised person', etc. I've long believed in growing as a constant goal and now, I've lived through such intense experiences that I could not help but have that change me and for the better.

Each day brings exciting moments, mixed in with the not-great ones and for that, I am grateful! I just practically skipped up those front stairs - YAY ME! OK, who cares if going down is much slower and cautious?! Not me! Not after spending months.. nay, YEARS crawling and/or hopping up and down the stairs in my former home post-injury! If the next day I'm leaning heavily on the bannister and must concentrate to get up those same stairs, FINE. I'm focusing on the times I get to 'skip'!

And if from time to time I have someone to share that with - both the 'skipping' and the hobbling... then I am truly a lucky woman.

Oh, and btw: earlier this month was indeed my birthday. The 4th of July, actually. And no, to my American readers, I assure you, I am Canadian, lol (an inside joke from my childhood, which came about when my then teenaged self and friend laughed over kids actually asking me - and a few adults! LOL - if I was American, since I am Born on the Fourth of July. Haha. No, I've never heard that, actually. Funny.).

Yep, another year. Nope, I don't feel older, but I DO feel wiser. And stronger. And happier. And excited about things happening in my life now and looking forward to the future.

Even though I must admit that finding a job with my necessary criteria is intimidating (and job hunting is nerve-wracking to begin with, usually), I still have hope that the right thing will come along... hopefully sooner than later!

I'm still standing... and doing it better than I have in years

2009-05-19T20:36:00.000-07:00

... too bad the pain hasn't followed suit.

Hello and sorry to those who read this humble blog; not only have I been so very exhausted with this rehab/physio thing, but I don't feel like I have much to say. Well, I probably do, but it's just rant-y and I'd rather rest these days, to be honest.

The physio peep seems all impressed with how well I've come along with my standing and walking; my gait is pretty 'normal' again and my range of motion - declared 'good' even 'very good' when I came in has even improved.

OK.

But hello - I STILL can't walk any distance without that KILLER DEATH PAIN called CRPS making me wanna sit right down.

My PT is trying to convince me why using a cane just makes it worse; he seems to think it sends the message to the brain that 'something is *really* wrong' and that if I just keep IGNORING IT, the pain will eventually go away.

I'm sorry, but that does NOT jibe with everything I've read about CRPS!

I DO understand about learning relaxation techniques and to not focus on the pain, but to go about life as much as possible.

Hi, YEAH, I WAS going about my life as normally as possible after my injury... and it kept getting worse and worse and WORSE until I left the job I couldn't do properly (all the walking and standing which I never went back to) and was forced to find desk jobs. WHICH I DID... and the pain STILL got worse AND the symptoms travelled.

Oh, and by the way? There's a little something called the McGill Pain Index. Perhaps you've heard of it? It ranks different types of pain, from the amputation of a digit to childbirth (first time prepared or unprepared; subsequent births) to CANCER.

Yeah, that cancer? The one no doctor would deny any opiate meds to? Ranks at 29.

CRPS, aka RSD or causalgia? 42. YEAH, that's what I'm telling ya; a freakin' FORTY-TWO.

So, when I've learned how to meditate, how to calm my fight or flight/sympathetic nervous system down so it doesn't make it WORSE (which I did before I went to this rehab, thanksverymuch!) it does help keep the pain more manageable.

That said... it STILL is like a form of torture to do much of any kind of standing or walking.

Sure, I'll walk across the room for you and you can feel all pleased with yourself for 'fixing me'.

Now, can you TAKE AWAY THE PAIN?

He seems to think that will improve over time. SNORT. Sorry, but if the problem was just that I'm walking poorly, then I would have been ok way back when I was first hurt.

It is a NEUROLOGICAL disorder. Nerves HURT even when I DON'T walk at all. Improving my walking will help secondary pain, like my hips and lower back (from limping) and it has.

But it has not CURED my chronic, degenerative neurological disorder!

If it DOES and I wake up CURED, OMG, you'll all be the first to know! And then, everyone I know online with CRPS/RSD will fly to Victoria, BC, to see this one clinic and get themselves cured, too! It will be AMAZING! You're all welcome to stay at my humble abode while you receive treatment, FYI! :P

Oh, and the clinic doc wants to wean me off the opiate med I take - even though he said it was NOT a problem - nor are any of the meds I take - and that it's actually a very low dose. Yet let's get you off it, Lisa, even though we're telling you to do all these exercises and now WALK, girl!

It's all illusion! Since I've gotten a vehicle, I no longer have to brave the buses, being banged around into, falling over before I can grab a seat, walking the blocks to and from each stop/my house. Having a car means door to door service, therefore making my inability to walk very far... well, often irrelevant!

I have pointed this out; I don't think they're listening. Grr.

After all, they are contracted with workers' comp to get people like me as better as possible and back to work. I've never doubted I'd work again and my goal was to get my pain better under control so I could do so, even if it meant only pursuing part-time work to handle the extreme fatigue I experience... fine, so be it.

And they're able to help me ensure it will be work I can manage and that any supports I need are available to me. Which is good, very good.

But holy hot damn if they try to tell me I'm all better or something, they will not believe the legal smackdown I'll be throwing at them as best I can manage!

Whew, I'm glad I get the week off starting next Wednesday; I really need it! (We get a week off mid-way to practice our learnings while at home).

And let me just say, probably the best thing - other than having kinesiologists who are helping me with all-over body conditioning exercises (I'm easily muscled and doing well!) - is having a psychologist with whom I get to meet to talk about whatever issues I have. They have two and mine is super. She specialises in persons with pain/injuries and has a deep understanding of the complexities it brings to one's life. Speaking with her is such a gift; I feel like she's really on my side and has been super-supportive of my views and concerns... she's great! :)

So, pros and cons. I knew going in that it would be physically difficult and demanding; I didn't anticipate how many emotional things would come up, too (like issues with dealing with those in 'authority' (docs, PTs, etc), sheer stress/pain/exhaustion, feeling doubtful and questioned... wow, it's a lot.

But, as the lovely psych says, take what you can from it and leave the rest.

And as a lovely other woman with CRPS and similar views on such things reminded me: You know your own truth. Hang onto your truth.

She said that on a day I really REALLY needed to hear that.

Oh, yeah! That's one more thing; some of the people I've met have been really great, so that's good, too. :)

Our New Furry Baby! Pt. 1

2009-04-25T22:22:00.000-07:00

This is Sachi, our new kitty. :)

Sachi on Boy Child (ok, young man)'s lap.

It's Japanese and roughly means "girl child of bliss" which she definitely is! (Pronounced "Sah-chee"). For some reason, I felt like she needed an Asian name but I wanted the meaning, too. I looked online for different names and their meanings and this is one I'd come up with prior to looking; when I found this meaning, more and more it just seemed right.

My Boy Child and I short-listed our favourite names (we waited until we got to know each other, too, before deciding) and when I called her them as she sat on my lap, each time I called her "Sachi" she turned her head around and looked at me! Like 5 or 6 times in a row!

I decided that was her telling me she liked that name!

We got her a week and a half ago from our local SPCA. We went on a Tuesday and came back the next day. She wasn't there the day before, having just been brought in and spent Tuesday in observation. She must have been meant for us because I was drawn to her and opened her cage (they are nice and roomy there, happily; if the cats have been there a while and are calm, they get to wander freely and into the fully chain-linked walled outdoor rooms, etc!) and she was happy to let me pet her, even though she looked rather confused and a little uneasy about the whole thing. Can't blame her.

The story they were told was that she and her brother belonged to a couple who were divorcing and someone offered to take them as he loved cats and his has passed away a while before. So he took them and only had them for about a week, when this young guy (who lives at home with his parents still) had his parents say in no uncertain terms that the cats HAD to go... apparently he was in tears when he came in with them, but was unable to work things out. (They have a special area for bonded pairs of cats where they are quite dependent on one another and must be adopted together; however, these two were independent apparently and I can only have one, anyway...).

So, despite the fact that my main criteria was a hopefully smaller sized cat which would be less painful for my CRPS leg when she sat/climbed on me. Sachi is not a small kitty; she is not chubby, but she is a good sized cat and has a certain dignified, even stauesque quality... tempered with some silly kittiness for fun! :)

She is 3 years old and we don't know much more than that. She was given an exam included with her adoption by a nice vet and he said she was in great shape. Several people commented how pretty she was when we were waiting to see the kind younger vet. I agree!

She is just the perfect cat for us; she loves LOVES to be picked up, held and petted for hours. You can hold her tummy up in your arms like a baby and she looooveees it! She lets me rub her belly, too, which has longer fur and is so plush, it's like this gorgeous stuffed animal - but she's very real!

She was a little nervous when we brought her home, but when I opened her carry cage and she came out, she happily let me pick her up, which had her purring up a storm. Took a while to settle in with eating, litter box and so on, and for some reason she was frightened of the hallway down to our bedrooms... so I'd carry her down for the first couple of days. Now she knows it's safe and happily follows me to bed at night!

She is also a boob kitty, as I call her. If she's on my lap, she will purr and reach up a paw to pet my face happily... then, if I'm seem ok with it she climbs up onto my upper chest and curls around so her back is to my face and goes to sleep, letting me know just how thrilled she is with her loud purrs! She also loves to give me 'kisses' , putting her nose up to me... doesn't seem to sniff much, but will gently touch her nose to my mouth often. I love to snuggle my face into her cheeks. Yep, there's a LOTTA loves going around here!

Here's Sachi before she climbs up for a boob nap, lol. See her daintily straddling my body with her hind legs? Before I took this picture with my cell phone (sorry for the quality) she had her head stretched up toward my chin, lying blissfully while I stroked her cheeks and head and back. When I stopped to grab my cell phone to catch a photo, this is her going "Hey, why are your hands holding THAT, not ME?!" Hee hee.

Also, when we first brought her, she was VERY chatty, 'talking' up a storm. She would meow to everything we said and meowed if we left the room... she seemed to want the reassurance and we were happy to oblige. She is still vocal and will meow if you call her, but she no longer seems nervous or jumpy. Yay!

Now, she has been snuggling with my son while I type this, happy to be with him, but she doesn't like it much when I'm on the computer! My son can sit with her on his lap and type away, but it doesn't work for me, unfortunately. Now, I will go to bed where she will be thrilled to sit on me when I've settled.

I'm very happy that she's come to live with us and even more happy that SHE seems to be VERY happy, too!

Thanks for listening about my kitty. I'm sure I'll have more photos to share - and even a video of her being 'chatty' when we first got her! But now, bed and kitty call...

THE Busiest Week...

2009-04-22T18:54:00.000-07:00

Which ran the gamut of, well, just about everything. So sorry to have been gone so long. A combination of mental and physical tiredness, pain, nerves... just all over the place. Let me elaborate.

Not only haven't I written myself, I haven't even had time to read my favourite blogs, let alone leave comments on them. I started catching up today and promise to write on your blog very soon, lol!

When last I wrote, I believe I was anticipating my imminent 2-day assessment at the Workers' Comp-approved rehab place. This was ok; they started me with a paper-based mental health screening, meeting with the program coordinator (a kinesiologist), the doctor (who I'd seen to confirm my CRPS diagnosis to Workers' Comp) and then the physiotherapist.

Second day had me seeing one of the psychologists who work there and then the occupational therapist. There are thorough, I'll give them that.

I was happy with what I'd heard and by the time I'd seen the OT, I knew I'd been accepted into their program; she said that one thing they are really looking for is WILLINGNESS to be there, not just because WComp wants you to be. I can understand that; things aren't likely to go well if you're resistant to being there.

I have found the therapists to be quite competent and understanding; best of all, they are quite aware of CRPS. In fact, being the only such program on the large island on which I live, people come from all over to attend the program! THAT must be rough - the drive from around 1/2 way up the island is a good 4+ hours. The further north you go, the longer the travel time (less modern highways, from my understanding).... but I digress already.

The PT on the first day, in his thorough assessment - through no real fault of his - started a pain flare which took until Monday to settle down. Not a great way to start off. When on the second day, I met with the kinesiologist who oversees my exercise program 'on the floor' I was trying to hard to focus on what he was saying as he walked me through my beginning exercises and generally showed me around, but I was feeling icky from the pain. I DID tell him I was 'flaring' from the PT's exam, which he seemed to get... but not to the full extent. I realised that it would be up to me to make it much more clear what that means for me.

Which I had the opportunity to do as each Friday, we meet with a few members of our 'team' to talk about our week, any concerns, etc. So on Friday, I was honest about how hard it can be for me to make fully explicit how I am feeling. I mean, I've had a LOT of practice in being 'nice' when asked how I'm doing, etc. I think most people with chronic pain/illness have the same challenge... so when it comes time to tell the people who need to hear it, we're not always able to be forthright enough. They were glad to hear that and my kinesi guy, K, noted this on our meeting notes and said that would be something that the educational component really addresses, which would help me. To be honest, I felt like he was a little... mmm... almost arrogant when he said that, as if I'm unskilled and they will fix all of that. But whatever, he's pretty decent, just not the kind of person I would usually connect with. Still, he seems truly interested in helping out, as do the other staff.

They also remind me that I'm able to take as many rest breaks as need be, get heating pads brought to me by helpful assistants, who I believe are physio/kinesi students, most likely.

The psychologist was really nice, very kind vibe about her. I told her honestly that I felt a little uncomfortable about this part of the assessment, knowing that it was all going into a report straight to Work. Comp. I don't have anything to hide, but I've learnt to be suspicious of them enough to wonder if any little innocent thing I might say could be twisted and used against me somehow.

She was very understanding and said her policy is that she'd rather NOT do that part of the assessment if that's how I felt. She doesn't believe in forcing people to do that and it's not what she's about (I'm really paraphrasing, but the gist). I said I'd already signed the release because I honestly don't have anything to hide and I'm very much 'for' counselling... when you have the right situation. Anyway, she was very nice and I felt comfortable with her,

Also the program director was trying to get me into another spot for my sympathetic block, but the doc is going away for all of May (maybe more) and I've already been put off TWICE, after first seeing him in January! I was called by the doc's assistant/wife from his own practice on SUNDAY to offer me a spot on Tuesday afternoon. Good thing, cause I didn't have much time to think about it since it was only confirmed Monday morning!

So, yesterday I had my first lumbar sympathetic blockade to see if it would reduce some of my symptoms. Yesterday I couldn't tell, but my foot got bright pink and HOT, not just warm (supposed to be a good sign) but it also burned. I felt like crap and went home, snuggled my new kitty (more on her later!) and passed out around 6:30, only waking for a bit to have something small to eat then going right back to sleep. I could have slept all day, but had to go to physio/rehab. Sheesh, I thought you were supposed to take things EASY after those things!

I would have liked to have rested and napped all day. When I got to rehab, I was feeling REALLY nauseous and thought I might just hurl everywhere, so I was upset. So I was allowed to lie down in a little room, and sip my water and try to relax. Then the doctor came to see me and said it wasn't really a normal reaction to feel sick like that; he wondered if I might just be coming down with something... then the physio came to check on me. Interstingly HE seemed to think it was much more likely than the doc had that it was just the way my body reacted and it might even be good since it might indicate that the sympathetic system was all 'ramped up' and it's a huge change to have it calmed, or something like that.

Personally, I think the stress of going to the hospital to have a doctor insert first a regular needle to numb you but then insert what must have been a 6" long needle through about 5" of skin, fat and muscle is a LOT to deal with!

Not to mention it HURT! A LOT! I told the nurse/tech (whichever she was) that I was a little nervous and she laid her hand reassuringly on my arm and said most people find it much better than they'd expected. I wish I had that experience. It was worse than I'd expected. :(

See, the needle is inserted deep into the back and is resting right up against the spine - which HURTS. Then, when it was in, the doc asked the x-ray tech to show a side view so he could make sure it was in deep enough (it was guided from the top before then, by x-ray). While that happened, I had this giant needle really deeply in my back and every time I took a tiny breath it HURT like... nothing I've ever felt. It was a needle pressing up against a branch of nerves; how could that NOT hurt?!

FINALLY he pushed the anesthesia into my back and then, gratefully, it was done. I was helped up and out and made to STAND in the hall talking to the doctor! WTF?! I reeled a bit and said I felt woozy, so he finished leading me back to where I could sit. So I did for a while and waited to see if my foot and leg suddenly felt better. It didn't seem to, other than the aforementioned pink colour and warmth, which was actually quite unpleasant.

BLARGH. I've had more than enough typing about this for now, even though I began this hours ago and came back to it. Stressful just recounting...

What else? Oh, so on Wednesday last, my son and I found our new furry friend, a pretty kitty from our local SPCA. She is just so lovely and loving and I'm thrilled to have her company! She's settling in now and seems to feel more comfortable. She deserves her own post, I think, so I will write more when I can!

Tomorrow I will go with my kinesiologist exercise guy to the pool to try some water exercises. Hrm. The pool they do this at is *cold* and cold isn't fun at the best of times and often painful for those with CRPS. There IS a pool in town with a therapeutic, WARM pool but it's not the one they use. Of course. Exercise dude agreed to come with me to supervise me in the warmer kiddie pool (they have two kiddie pools, one of which is 3-4 feet deep; enough to get some range of motion going on). Well, I'm there to try whatever I can do to help myself get stronger and hopefully minimise my symptoms as much as possible, so I'm going to the pool!

Next time I will write about kitty because that is a happy subject. Also, I have a picture of us to share!

Finally, a date - the start or??? Also, more freedom!

2009-04-08T22:48:00.000-07:00

I received a phone call today from the rehab services company which is contracted by workers' comp for my assessment dates. I 'get to' go in next Tuesday and Wednesday; Tuesday will see me meeting with the woman who coordinates the program, then I have a 1.5 hour appointment with the doctor I've already seen (she didn't realise that and said I might not need that long since I've seen him. Uhh, yeah, you think?!). That will be interesting as I've since read his report which contains quite a number of factual errors, not to mention some assumptions I'm not really certain he's qualified to make - like what kind of person I might be, personality wise. Ahem.

I'll have to consider carefully how to mention these things/if I should, since I don't really want to piss him off as I may well be rehabbing under his orders, essentially. Ugh. But I think I WILL put a call into my legal advisor telling him about the errors and assumptions in this doc's report - sheesh, that report just ticks me right off to think about it! :(

Anyway, after the doc again, it's physio. Tuesday I'll be there from 9 until noon.

Wednesday I'm to return at 11 am to see their psychologist (!) and then their occupational therapist. I'll be done at 2 pm. There was no mention that this runs across lunch time or how much time I'll be with each person, for that matter (and I was sorta distracted by another call on my call waiting which I was trying to ignore - impatient teenager!).

So, I'm not exactly looking forward to yet another assessment (UGH, more poking, prodding, bending, making me do shit that HURTS me and worse, usually makes me hurt a lot more later that day or the next day/s). Then I get to go back and talk to someone about how I FEEL about all of this, to determine whether or not my pain is 'worse' because I manage things poorly, etc. etc.

She (the co-ord person) went on to say how there was a 'lot of education involved'... gee, like the educational class I just completed at the hospital over 4 weeks? Which didn't teach me too much since I've already done a lot of reading?

Oh, one of the things which Dr Knowsitall suggested was that perhaps it was a personality tendency of mine to be 'obsessive'. I'm not saying this isn't true somewhat, but I wonder how he managed to determine that within an hour of meeting me? The only thing I can think of that might have described any 'obsessive' tendencies was telling him that'd I've done some reading/research on my disorder so that I can better understand it... this came up when he asked me if I knew anything about what the other doctors had suggested (i.e. diagnosed me with) I had.

WTF?

So, yeah; that will be fun. I mean, it's hard for me to not feel kinda defensive and suspicious when every little thing will be reported, in great detail, to worker's comp - probably from how I'm dressed, to how I rate my pain levels, frustration with the workers' comp process, how 'disabled' I think I am (another thing Dr 'K' thinks: that I have a heightened sense of disability due to my applying for disability benefits - because I HAD TO! GRRRR! Um, HI! I can't walk properly anymore, for the last 3 years, but I USED to be able to; now I'm not able to - so right there, isn't that kinda like becoming DISabled?! Oh, also? When you have pain that's rated as being worse than cancer pain, I think that's a kind of disability, too, no?!).

Sorry, venting. Sigh.

Frankly, after seeking some counselling with someone who understood disability and didn't have a hidden, money-based agenda, I feel validated with my fears, concerns and anger at the way I've been (not) treated and had to fight and advocate for myself for so long to get some help. Well, I DID it and I'm now getting help - let's hope what they offer is useful!

And I do believe, especially since being able to get it off my chest in a safe environment, that I'm actually doing quite well, not just coping but coming to terms with things in a realistic way, not denying, not exaggerating. And where I once felt sometimes enraged, I now feel outraged, if that makes sense to note the difference; before it felt huge, horrible and inside me, making me feel sick. Now, it feels like something outside me; still very much worth being angered about, but in a way that is productive, that makes me able to do something, not a feeling that's powerless and scared.

But for now, we have a long weekend coming up. Our couple of days of gorgeous spring warmth seem to be getting lost in cooler temps with some showers, but let's hope they're leading to some May flowers!

On Sunday I'm taking my friend out for a belated birthday brunch, but he doesn't know I'm going to be able to treat him for a change - or that I remembered it was his birthday (but I didn't get to see him then because he had other plans...) so it will be a little surprise I'm going to spring on him, hee hee! I'm so excited! M is someone who has supported me in both emotional and very practical ways the last few years while I've struggled so much financially - and most every other way, too! His selfless generosity is seldom seen these days and I hope dearly that his kindness is returned karmically, manifold.

Whee, I can't wait to surprise him! I love giving surprises! Also, I'm getting him a gift of a massage; I think he'll really enjoy it. Oooh, I love giving prezzies!

I hope you all have a lovely weekend, whether or not you celebrate Easter or Passover or nothing in particular!

PS I just have to share: today, I paid off almost all of my credit card and line of credit debt, accumulated while forced to pay for my own medications, etc. the last couple of years. I'm still waiting to hear if I owe any monies back to the federal gov't for overlap of workers' comp and unemployment insurance, but I will have enough to cover that, too.

OH. MY. GOSH. I cannot tell you how EXCITED this makes me feel - to FINALLY know that I won't be in debt anymore, for something I didn't choose, no less! - and to know I have that credit should I ever need it. GRATITUDE, I feel such GRATITUDE for being able to log onto my online banking and enter those numbers and hit PAY BILL! Whooohoooo!!! More freedom!!!

Happiness, sadness, anticipation... and sunshine!

2009-04-06T13:37:00.000-07:00

Well, what a week. I bought a (pretty new) van (never owned a vehicle so nice or so new! I still have trouble believing it's MINE - all mine, all paid for!), found out that my first nerve block is to be postponed AGAIN (doc says wait until you can be assessed at workers' comp's program first. Grr...) and then the sad news...

My bestest friend Ian's 'baby', his doggy Maggie, aged 15.5, was put to rest on Saturday afternoon. She lived with Ian's parents, who I consider friends as well (they're pretty cool people and have even helped me out in many ways - I can't believe their kindness to me, but that's another story) and I've helped out doggy-sitting when they've gone away.

Maggie's older brother, Markie, left us about 1.5 years ago when he was aboutt 15, too. Both are pure-bred Vizslas, an Hungarian hunting dog, gorgeous russet in colour, which turns to cream with age, mostly around the face - from what I can tell.

Maggie, when she was young, was even shown but always had this puppy spirit about her; she seemed to think she was a puppy until she was about 13. I think when Markie died, that really aged her; her constant life companion was suddenly gone and it was scary for her to be alone - hence my helping with Maggie-sitting, which I was always happy to do.

I've never been a 'dog-person' I wouldn't have said, but it was hard not to be won over when I first met Maggie; she would come to where I was sitting and stand with her front legs on my lap to get my attention and more lovin'. Her people were suprised, saying she'd stopped doing that some time ago (with age, they assumed) and she would always do that when I came to visit.

Even though she wasn't 'my' doggy, I've been terribly saddened by her passing, too, and have and am shedding many tears over it. I don't really believe in 'heaven' per se, but I do like to believe she's in some special doggy heaven where she's been reunited with her brother and mother and they're all happily playing in the sunshine together.

She brought me so much joy, even though I didn't live with her or even see her especially often and for that I am very grateful. Our 'pets' are like angels sent to love us unconditionally and they do so - often with such enthusiasm! LOL - that it is such a painful loss when they leave us.

I'm sure anyone who has lost a pet knows just how I feel... and moreso, Ian and his family.

Here is a picture of Maggie, which must have been taken a few years ago as she's not been able to run like that for the time that I've known her and her face was just starting to show her age, but it shows that happiness that she brought to her family and friends, I think.

I'll miss you, Maggie. Thank you for making me smile, even when I hurt so badly.

***********

Not wanting to end on a terribly sad note, it is finally looking like Spring here; today is glorious, blue skies and is getting quite warm - there are shorts and t-shirts popping out all over and everyone looks happier after a unusually long, COLD Winter for our area.

Today I had a surprise appointment at the hospital, called in on a cancellation for an assessment by their physio. Yeah, I know I'm waiting for the workers' comp one, but I kinda wanted a second/other opinion, you know? I'm just sort of suspicious of anything to do with those work comp folks now, I guess. Never hurts to have a 2nd opinion, right?!

Oh, they also called because they were wondering if I was coming for my nerve block! After I spoke to the doctor and he said to wait until I can be assessed at the other place, I asked if I needed to contact bookings to cancel the appointment or would he; he said HE would. Apparently he did NOT. $#*@. I HATE to think that because of that someone else might have missed out on getting an appointment - even if it wasn't MY fault! (This IS the doc who gave me a 2:30 appt. time, then when the booking people called they said 10:30. I told them he said 2:30 and they said "WHO said that? When?!" Always nice when docs go making/breaking appts. but neglect to update the BOOKING CLERKS who organise these things! Sheesh!

Oh, well; at least I was assessed by the physio, who I knew from the 4-week Pain Management & Education series I just completed. She gave me some exercises to help the hip issues I have from not being able to walk properly and was even able to do some stretches for me which loosened up the 'evil' (painfully 'stuck' feeling) hip! YAY! Some of the assessment was pretty painful (always is, but she definitely was careful to be very gentle) and I have a feeling the increased burning pain now will be worse later... but I refuse to dwell on it in fear, as I once did. It will if it will and sometimes it does, sometimes it does not flare up. That is CRPS. Knowing what it is and the nature of the beast, so to speak, actually helps me feel less fearful and better able to cope.

Also, in case the work comp place doesn't think I would benefit from their program (may well happen due to the length of time that I've had CRPS, since it responds to treatment in the early stages when I wasn't anywhere near being diagnosed...). Anyway, if that doesn't work out or it's not enough, I'm still *in* with the hospital's pain clinic and have been told I'm able and welcome to access their services when needed/wanted. Yay, again!

I hope to be able to attend the twice-montly support group and possibly a few other things, like their meditation series, pool therapy instruction and so on. VERY useful stuff and nothing I have to pay for - oh, the wonder! Well, wonder why I didn't have this THREE YEARS AGO. :(

BUT, I'm grateful to have it now.

And so, I'm off to find something to do in the sunshine and warmth. Perhaps I shall drive myself down to a beach or something and just marvel at both my new mobility and the gorgeous day.

I DID IT!!!

2009-04-02T14:33:00.000-07:00

OMG, I've never bought anything sooo expensive before in my LIFE - except for some education, but even that was partially funded by tuition grants...

AAAAH! I am now the proud, non-pole-hitting (or so I hope, OSM!) owener of a new (to me and not very old anyway) Honda Odyssey! Yippee!!

Thanks to the extra-support from C & K, I was able to think-out-loud my thought process about purchasing the van, as I was trying to decide if this was THE VAN for me or just that I wanted it to be - if that makes any sense.

Anyway, I did a lot of research on vans and have been looking for some time so I feel quite confident that the deal I got was good - I did wrangle them down from the already reduced sale price a bit more (sure, I could have walked away when they wouldn't got a touch lower like I'd dreamt they would, but at this point I wanted to vomit from nervousness so I said "OK, if you meet me half-way between the price you're saying and the one I want, you've got a deal... the finally went for it - but I was pretty darned sure they would, hello! They don't want these things sitting around for any longer than necessary.

Add on one wicked warranty (there is still some factory warranty left, too!) which covers like ANYTHING which could go wrong and I feel I've made a very wise, thoughtful, kinda scary but right for me purchase! Whoo!

Also, I still have enough money to repay the gov't if they say I owe them some money... and to take care of nearly all of my outstanding debt, if not all of it (will find out in next two weeks).

Just got a call from case mgr and work comp; apparently their special CRPS rehab program won't be able to get me in until April 13th, it looks like, when they will have the space for me. BUT she said that people do sometimes come to the program having already had a block, so it's up to the doc if he wants me to get it done or wait. Grrr... why do I have a feeling that I might not be getting that block on Monday, either? Faarrrgh, don't these people understand I'm a PERSON, not some number?! OK, no worries... I'll just wait here, in pain! Yep, FINE.

Well, right now I have a shiny new van which will help my mobility all by itself! I can go get groceries! I can pick up my kid when he's out late! I can take myself to the doctor and not try and figure out how to manage in the pouring rain/wind-warning level winds! Ahh, the freedom!

OOOH, speaking of picking up kid, think I'll go pick up Boy Child/Man - just because I can! :)

Not even the cramps that started just before I went for the test drive shall dampen my day, either! ;)

PS Photo of me smirking in my new van with utter glee pending! Meanwhile, you can surely do a search for an '04 Honda Odyssey; mine is dark blue - quite pretty in the sun which is trying to come out! :)

Whew! One less thing to worry about...

2009-04-01T12:36:00.000-07:00

I finally got word from my legal advocate (not the workers' comp one) about possibly having to repay monies to the disability benefits I began receiving last fall.

She called to tell me she finally spoke to a supervisor and, after explaining the situation, was told that no, I don't need to repay anything. At her advice, I called the office to notify them and to ask if I should repay the cheque I just received for April (directly deposited but came before I got the first regular work comp cheque) or not. They said no, because of their system working on the month behind for the month ahead (don't even try to understand, but you declare money you made in the last month on the 'stub' from the cheque you just received for the month ahead... which would affect the NEXT month's cheque. Got it? No?! LOL.).

Anyway, they didn't want me to close my file because I would lose my medical benefits (some prescription coverage) but the meds I take are a) not covered anyway and b) fully paid for by work. comp. now - YAY! So they said "Oh! OK, you come down and sign and we won't send more money." If I need disability assistance again, I just reapply, but without the whole medical proof part... phew.

THEN I had to call back because I forgot to ask about my damage deposit, which they will give you (for my December move to a no-stairs suite) and you pay back with a small ($20) deduction from each cheque until it's paid off. No interest, which is a nice option.

Anyway, I wanted to square that away, so I called back, keener that I am, and asked how much and to whom should I make the cheque or money order out to? They were surprised and pleased that I did so - thanked me for doing it (without being told, I assume, lol) - and now I know how to repay it so I'm all set, just need to get in there, sign the paper saying "No more benefits for now, thanks" and give them the damage deposit cheque. Done, yay!

Bummer: now I won't be able to get my Camp in Provincial Parks for Free! form for persons on disability assistance; BUT since one cheque from work. comp. (2 weeks) is very nearly what I got from disability for a MONTH, I think I can manage to pay to camp if I feel up to trying it this summer!

Which takes me to another topic: the Van search! I've been looking at minivans (not especially sexy, but I'm not a sexy-car person and I like practical. I'd get a wee SUV-type but I need more room if I'm to be able to haul my scooter IN the vehicle! YEAAAH!). SO, minivan here I come...

Can't afford new or anything (though the American company currently has new Dodge Caravans for about what used dealerships are trying to sell them for!!!) but I tend to prefer Honda or Toyota for their reliability - again, I'm all into the practical, I am.

See now, I've found what I think might be THE VAN for me. A Honda Odyssey, LOTSA room for the scooter and a lift (which is another sub-topic, as a lift costs a LOT and it looks like the lift I wanted won't work for my scooter without a mod that would make the seat too tall for me. BOO!) and it's even the fancy model with leather seats.

I've looked at it after hours several times on the lot, which is literally two blocks from my home. I've longingly gazed through the windows and drooled a little. Heh. I loooove it.

Plus, practical gal like I claim to be, I have done lots of research, from Canadian Driver reviews to, more importantly, Consumer Reports, which is VERY detailed, each year, each area of the vehicle and so on. Turns out that "my" van is THE RIGHT YEAR to get - it had excellent ratings in all categories except they didn't like the door handles, it seems. Meh; I'll live.

HOWEVER, this van will be a lot more than I could get, say, a Dodge Caravan (super-common here) of similar year. In fact, I could get a Caravan a tad newer perhaps and install the motorized scooter lift for the cost of the Odyssey. BUT I wants my reliability and I do NOT want to have to pay a few thousand for a transmission which falls apart in the next two years (one of the many things Cons. Reports warns of; the Caravan is a 'do NOT buy this vehicle' rating).

I do see tons of Caravans, so perhaps it's the frugal choice - at least up front. I like it's size and shape... but I'm leaning toward the pricey Honda. In fact, I stopped at the dealer yesterday, on my scooter, to see if anyone would offer me help. Sure enough, right away, a salesman who's worked there for years came out and I felt comfortable with his sales approach: appropriately helpful and attentive, but not pushy or disbelieving I might actually be a buyer. I'm VERY choosey about salespersons!

So, he opened the door and slid the power seat all the way back, showing me the plush, padded leather seats. I asked if I could have a sit, to which he of course replied "Please!"

It was like it was MADE for me! I was able to hold the wheel to steady myself, slightly lift my 'good' leg onto the seat, which since they are leather, let me slide comfortably onto the seat. No flopping down like in my friend's car, nor hauling myself up and out painfully over a 'bucket' seat which hurts me! NOPE! It was like buttah, I tells ya! BUTTAH.

I tried not to squeal with delight or act like I'd lusted after this van for a couple of weeks already, since the price (though reduced, currently on 'sale') is a little more than I want to pay - it's still a really great deal for this van. He then showed me the second row, which is also two 'captain's chairs' and the third row, surprisingly comfy looking (back rows of vans tend to the, um, hard side in seating) which holds 3 passengers. It's also 'stow-n-go' seating, which means instead of needing to take it out for my scooter (heavy!) you take off the headrests and put them in the mesh bag attached to the back. Then, you pull a lever which folds the seat back down. Next you grab a long strap with grab loop on the end and pull - it pulls the whole thing on its tracks into the recessed area behind the seat and it's folded FLAT into the floor and voila! Instant TONS of room and your seat is still there when you need it!

OK, I know this has been out for a while, but I was sooo excited as *I* could do that myself! Me! Best of all, I already checked with the van modification/lift expert guy I was referred to and he checked with the manufacturer that, yes indeed, the lift CAN fit in this year/model with my scooter! AND they don't need to do anything with the back row, as the lift simply attaches overtop, bolting to the floorboards for safety, without harming the seat - should I wish to sell ever, this is important!

Um, yeah. So, after all that rambling, can you guess which van I want? BUT I'm trying to be reasonable and it's such a hard decision; I've never bought something this expensive and want to make the right decision.

Now, when I explained that the van looked like it would fill my needs great but that since I have to put a lift in it which will cost around $5000, the price is a little higher than I'm able to manage... but, I'm still really liking it. He said that he was certain the manager would be willing to work with me and a 'deal could be had'. I believe this guy as I know he's worked there for a LONG time... yeah, that's what I wanted to hear!

I said I needed to think on it and double-check about the whole lift thing. He agreed that was a good idea and to let him know if I wanted to test drive it and he would make sure it was gassed up and ready to go, anytime.

I didn't even mention the possibility of trading in my other scooter - the motorcycle one! - which could help the cost if they were willing to take it...

I still need to see if I need to repay the federal gov't for unemployment benefits and am awaiting their decision, due in the next two weeks. I'm nervous about waiting for that before buying the van; what if someone else takes it? There are not a lot of them being sold on the island I live on, with such low KMs on it, in such great shape and for such a great price.

I found one privately which is about 40% less; sadly, it is an older model that has major transmission issues in that year, though they purchased an extended warranty which would cover this.... transferrable... but I'd still have a van which is 6 years older with more KMs, though looks to be in great shape.

AAAAIIEEE!

There's just always something stressful in LisaLand these days. Well, I like to choose my battles and this is the 'reward' from the workers' comp battle: being able to purchase a vehicle which will suit my needs.... and allow me to take my nearly-grown son on a road trip for the first time EVER. Yeah. That makes it seem like the right choice to go with the newer, high-end, low KM van, doesn't it?

I dislike making big decisions such as this! I tend to worry about making 'the right choice'.

With a low KM Honda, glowingly reported on by Consumer Reports as an excellent used van choice for that year... seems like a good option? Or do I just WANT it to be?!

The BIG LETDOWN!!! :(

2009-03-31T13:22:00.000-07:00

First, thank you all again so much for your sweet, lovely and comforting words of support on my last post! It made me teary once again to find that people had cared enough to take the time to send me those lovely comments. :) Once again, I'm pleasantly surprised by the extreme kindness of virtual strangers - or virtual friends, really! WONDERFUL friends I am happy to call you all!

So, here I expected to be feeling at least a little woozy or something and it turns out I feel JUST THE SAME AS I DID THIS MORNING.

Why? BECAUSE I DIDN'T GET MY FUCKING BLOCK TODAY!

Nooo, the doctor says, there's much fancy x-ray machines that must be set-up for this and that takes preparation! WHAT?! I've had this appt. for like almost 2 months - I thought that WAS prep time!!!

Also, he says "So, still having some trouble with your... foot, is it?"

WHAT?! NO, my CRPS of THREE YEARS just magically went away without intervention and that's why I'm here today - IN THE PAIN CLINIC! OMFG.

He looks at my feet and says a few useless things then tells me the most important part is "How you react to the pain" which is just what he told me LAST TIME.

He then tells me I can come in for it FOR REALS next Monday, gives me a time and says to arrange with the rehab place I've agreed to attend, paid for by WCB. Since, as I already knew, they want to get you mobilised right after the block to take advantage of it... but my case manager clearly hasn't even read the description she faxed me herself, since it said this but SHE didn't know if they'd even want to see me on the injection day! AAAAGH.

So I left, waiting to bawl in anger and frustration in the car, but I couldn't even let loose because the borrowed car of my friend's mom (he drove me) also contained mom (who's really cool, but still, I'm not that close with her, really) since she coincidentally had an appt. at the same time and at the same hospital.

She was pissed for me, too, when I walked out! They looked surprised to see me amble out after only a few minutes go by and were confused, as I tersely spat out that I just got blown off for the SECOND TIME seeing this dickhead, who's supposed to be THE doctor to get these injections from.

I'm gonna have to come back to this later as I'm not sure I'm even making sense right now (not that that is different for me) but it's just making me MORE pissed off!

I'm going to enjoy the sorta sun that has been out on and off today, along with a hail shower, and go the bank, deposit my workers' comp benefit cheque (YAY, I finally got one!) and check out that minivan for sale on the lot just down the street... think it might be *the* one for me!

Yay, I managed to finish on a Happy Thought: minivan buying and having won the right to be receiving compensation from workers' comp once again! :)

PS Stay tuned for the riveting details of the alleged REAL nerve block day on Monday! Aaaah!

The Big Needle :S

2009-03-30T23:13:00.000-07:00

SO, tomorrow is the first time I will undergo the procedure known as a sympathetic nerve block, mine being located in the lumbar region. This is hoped to produce some overall anesthetic effects and sometimes (for those who are really lucky) long term, though likely slight, overall pain reduction.

It's also used as a diagnostic tool, but only 'sorta' since, if it works, it only shows the person has 'sympathetically maintained' pain - i.e. their sympathetic nervous system (responsible for the 'fight or flight' response and lots of anxiety feelings to go with that) is keeping the pain pattern going. HOWEVER, when one has CRPS/RSD, the pain cycle is not always kept in just the sympathic nervous system, therefore it might or might not help me.

Some time ago, while researching, I read a study which suggested that having even one of these blocks might work to prevent the horrible and often devastating progression of CRPS/RSD - so I started campaigning my docs to let me try one; I'd been told that since I was not even diagnosed until 23 months post inciting-injury, it would be unlikely that any treatments would help (they work best if performed in the first few months following the beginning signs of CRPS/RSD).

And now, workers' comp is on board, so they are happy to have me willing to try their program (waiting to hear an intake on that to see if I'm even suited to their program!) but this is my doing and what I wanted to try - an insurance, so to speak. At least I'll have tried it and hopefully it's really REALLY helpful!

{See, back in early January, when I went in without any intake or info from the doc and was too 'anxious' to try the block then and there! Sheesh - all they had to do was send me to the people I've seen in the last month who explained it all!!!}

ANYway, tomorrow I'll go back in and this time I'm GETTING the damned thing.

And I'm pretty damned scared, to be honest. I mean, CRPS/RSD is an incredibly painful disorder/disease and it sounds silly to be scared of a needle... but it's going into my BACK, near the hip and rib cage region... not like a blood test which doesn't bother me...

Also, I know someone who got a bloodtest and it sent off her CRPS in her arm! OMG. (Luv ya, Caf! You rock!).

Sorry, I'm blathering. It's late, I'm stressed and avoiding... also, doesn't help that I'm extra weepy as I'm about to start my monthly cycle - oh, joy, like this isn't fun enough already!!!?! The day or two beforehand, I tend to be extra-weepy - what can I say? This time I've got something to genuinely be concerned about...

But I'm REALLY hoping the worry will be for nothing and it will go SO WELL and I'll feel GREAT after and want to go for a nice, long walk! Yippee!

Do you think that will happen?!

Sigh, I can hope...

Cracking the Facade/Reality Seeps In... Again

2009-03-17T21:27:00.000-07:00

So, I went on my jaunt to Vancouver for the weekend (for those not nearby, it means getting of the large island I live on and going to the mainland. It involves a ferry ride of 1.5 hours plus the drive from the ferry into town...). I've done this before and not taken a car, but used public transport and it's fairly simple to do - Vancouver has great transportation options.

Lovely best friend, Ian, drove me over in his mom's car (she kindly offered its use in return for my help doggy-sitting a while ago) which is a small wagon-style car; great for Ikea furniture-getting!

The main goal (with Ikea) was to get my new bed frame with those flexible European-style slats (instead of a boxspring) for comfort - very important when you have chronic pain and especially CRPS.

I got it! It looks like this: http://www.ikea.com/ca/en/catalog/products/S69849905

Except my linens look waaaay better on it! I might just have to take a real picture to show you all!

Anyway, best part is that it's SO COMFY - and that I think it's very nice looking is a bonus. :)

But we shopped twice, dividing the trip into two pieces on Friday and Saturday, to minimise my exertion. I took the manual wheelchair that was suggested to me (thanks, Donimo! Brilliant!) and that was a HUGE help (Ikea does have them to borrow but the one I was loaned was FAR more comfortable, with a great seat cushion...).

The next day I was able to get a new set of sheets and a few household things, the largest being a new dining table and chairs set which will easily seat four, instead of the tiny hand-me-down I have now. It was very cheap and I liked it, so it felt really nice to be able to go ahead and get it.

Oh, by the way; I got that massive cheque from workers' compensation I've awaited! It's BIG to me - a comfortable year's salary for many and around 2.5 years' worth of provincial disability income if you have a dependent. A lot to me!

However, it looks like a yet undetermined amount of this will need to be repaid to other government agencies which provided me with income during the period when wcb should have and has now repaid. Confused? I'm not surprised!

It feels a little like winning a modest lottery prize but losing most or all of it to taxes! :(

So, Ian went home Saturday and I was to spend the night with my friend in Vancouver, hoping to see my life-long friend on Sunday for a bit before I started the long journey home (despite it being close as the crow flies, with the coach bus plus ferry, it takes FOUR HOURS to get from Vancouver to Victoria by this method!).

At my friend's house, we had dinner up the street (she drove, even though it was a couple of short blocks away, without complaint - she was great!) and we came back to her place, watched a video and crashed early (we are NOT party animals! LOL!). She gets up really early but I was so tired that, after waking briefly to potty and take my meds, I slept again until 10:20! Whoops!

But I was feeling 'hung over' from the shopping (even though I didn't walk) and the walking I did with my friend (almost nothing!) that I was exhausted. THEN it started to SNOW! Big, huge, wet, slushy snow... omg! I only had my cane, which is slippery, and I suddenly realised that even if I made it out to where my friend lived, I'd have little time to visit and have to walk onto the SkyTrain then from that stop to the bus depot... in the slush... and I wanted to cry.

I called her back to say I didn't think it would work, but hoped to come back VERY soon and promise to make a good visit then. I got her husband as she was putting the baby to bed; he was kinda pissed sounding and said, if he could, 'boldy request that in the future we make firm plans as he had a daughter who didn't do well waiting around..." or something close. (*Edit: forgot to add further commications w/hubby; see comments.)

I felt horrified. I thought I had communicated to my friend that my plans weren't firm because I was dependent on rides and how my energy and pain levels were doing, but I would try my very best. I tried hard not to cry when I got off the phone because my friend had stopped in a store and there were people around...

(I should say, there's been a little friction with us before; we seem to be rather opposite - me the very liberal, even sorta socialist, hippie-ish queer woman, who's poor and lesser-educated (in terms of fancy papers, at least), while he's a very conservative lawyer... I wouldn't try to argue with him, let's say. He's very smart and lawyers make a living arguing...!)

So I got my friend to take me to an earlier bus and while I was waiting for the bus to pull away, I called the very cool Donimo, whom I've yet to meet in person (but can't wait to! I just know we'll get along swell!) to tell her I was leaving and that our potential meeting wouldn't happen this time, either. Of course, she completely understood and told me she had no expectations it would happen - she KNOWS all about the unpredicability of the life of someone with chronic illness/pain. I felt much better after talking to her, even though I was really disappointed to not get to meet her, too.

Interestingly, when I hung up, the man who'd sat down in the seat beside me said he couldn't help but overhear... I apologised, saying it was a little rude to chat on the bus (the bus hadn't left the terminal yet, so I didn't feel too impolite). He said no, not that, but that he was a physiotherapist and that perhaps he could suggest help, essentially. We chatted, I told him what I had and how I'd been fighting workers' comp forever and am now finally about to get help. Turns out he also works for the same place where workers' comp will be sending me for treatment! Huh! Small world, eh? Anyway, we chatted for much of the drive to the ferry and he was very encouraging and optimistic for my treatment to help me. Interesting timing that I should get those messages right then, yes? :)

So, Monday I managed to drag myself to pain education/management class at the Pain Clinic in the hospital - though I missed my bus and needed to call a taxi (lucky for Taxi Saver half-off coupons for disabled persons!). That sucked, though. Then, as soon as our discussion on communication began, I started crying - and couldn't stop! I told the class about the plans with my friend and how I gathered I had not communicated clearly to them my needs and how it seemed to have cracked through the facade I had been working to build; the one that says "I'm ok! I can do that! No problems!" and so on. The one that lets me smile and nod when people say hello, ask how I'm doing... and all those unstoppable tears are bits of the pain (emotional AND physical) I'd been pretending wasn't there.... and it just cracked open that day.

When I'd had a few sessions with a counsellor through a local community agency (which offers sliding scale, actually affordable counselling for the community) I had someone with whom I felt safe and could be honest without 'scaring' her or 'overburdening' her with my feelings - my true feelings. And it was SO helpful - but there are many in need, so there is a session limit...

Anyway, without that outlet and feedback and support, I've been on auto-pilot a lot, trying to get through things, just focusing on pain class, while also jumping another couple of hoops for workers' comp (another MRI, which I had to have done twice because the first wasn't the right view... another time I'll explain more, perhaps)... blah blah blah.

What I'm rambling towards is that it hit me, again, how hard this trip was; even though I had only a few, simple things on my 'list' of what I wanted to do, I only got maybe half of it done. It was hard to not realise that I've done this trip before... and gotten much more done. The realisation of limitations. It hurts.

More to come: the upcoming Sympathetically-Mediated Pain Program from workers' comp; when (if?) I'll be starting with them and what it will look like... also, my first nerve block is scheduled for the end of this month - scary but hopeful!

And maybe I'll make more sense next time?

Oh! And one more thing; there are some really different people in my pain class, which is neat to have variety, I think... and I'm very glad to have met a wonderful woman who is near my age and seems to share a lot of my... views, we'll say. I don't know her well yet, but I'm really happy to have the chance to meet her and get to know her a bit. She's been so supportive and I've enjoyed what she's contributed to the class. It's just been incredibly wonderful to connect with others who really get it, you know? Of course, there are several lovely people who have come here to read my ramblings who also really get it - however, it's special to be able to meet people in person, too. :)

I hope everyone is getting some support in their lives right now. Seems like a lot of changes happening for everyone lately... how are you coping?

Pain-a-versary

2009-03-10T00:43:00.000-07:00

Well, ok, I'm starting to write this after midnight (so much for getting to bed earlier tonight) but today/yesterday, March 9th, 2009 is the 3rd "anniversary" of being injured - the injury that's changed my life, introducing me to Complex Regional Pain Syndrome.

I knew it was coming, hadn't forgotten or anything... but it kind of hit me today at pain ed class when mentioning it while chatting with a couple of women from the class; suddenly I felt the painful tears welling up...

I can blame hormones, at least partly, but I had to acknowledge the incredible amount of pain that comes to mind when I think of these THREE long years, in so much pain, without any idea what was wrong for the first two years... just knowing in my gut that something wasn't right.

I still haven't quite rid myself of all the anger of having to fight so hard myself, when I was in so much pain I couldn't think straight, arguing with a big corporation which spends every day not helping people like me...

But most of the anger at them has really shifted as I realise it does me no good to be angry at a big corp that's not a person, just a corp!

What I can do is use that frustration and outrage at an incredibly unjust system to fuel my drive to educate myself and to help others.

There is more I can say coming up about the pain clinic(s) and treatment I'll be undertaking, but for today, I wanted to leave it with respect to the very real emotional pain caused to me.

I can honour that it is both emotionally/mentally painful to feel abandoned when you're already physically hurt, feeling vulnerable and scared.

I've worked hard to heal that pain, the feelings of vulnerability. And I'm pleased to say that I have been able to recover and strengthen my own sense of self, to feel empowered once again.

And it's an ongoing thing, like most good things in life, but it's something I know I can do and continue to do so happily.

The fact that I will now be FINALLY getting the treatment I need and DESERVE is satisfying - although there is still that twinge of about bloody time!

To Lisa: You have done an amazing job of learning to advocate for yourself, when the pain was so much that most would have wished to give up everything (and it almost got you, too), you still kept that shred of hope that if you just held on and insisted on telling your story in truth over and over until the right people heard and helped... and YOU DID IT.

Be proud of yourself. I am.

From: Lisa

PS The giant machine that supposedly protects workers here (and in many other places with the same thing)? They should be ashamed of themselves - each and every worker who prevents workers from getting the help they need and deserve.

More Scintillating Fun... Well, ok: What I've Been Up To

2009-03-04T10:08:00.000-08:00

Hello, there! Well, what has happened since I last wrote? Oh, let me update you, lovely loyal readers!

Saturday, still 'high' from my successful scooter+city bus trip, and after I opened the RDSP at my bank, I went across the street to a local shopping mall, where I happened to stop by a cellular/mobile phone store. You see, I've been shopping around for a new phone/plan company, after having been with the same one (phone and company) for 4 years and noticing one of the major competition companies seemed to offer a better plan option for me (turned out there were two better options) and I wasn't to thrilled with the phones my then-current company was offering, 'free' with sign-up to a contract or not!

Now I like to think I'm reasonably well informed, although admittedly no kind of techie person (I hit up my best friend, Ian, for all those things 'cause I know I'll get accurate info from him) I was finding it hard to wade through all the new offerings because cell phones are of course morphing into mini-computers or "SmartPhones". Well, I already HAVE an actual mini-computer, complete with keyboard and adorable, portable 9" screen (SQUEE!) which I can actually TYPE on with its QWERTY keyboard, not some teeny, tiny cell phone buttons... anyway, I didn't want email or even being able to Facebook on the phone, but did want something useful to me with a plan that fits my budget (small).

Well, I lucked out at this location because after speaking with 2 reps on their customer services lines, visiting 2 other stores, including one which represents several phone companies, I was rather underwhelmed with the customer service I was receiving and, well, I'm particular about that. As a matter of principle, I don't care if I'm walking, wearing casual jeans and my usual fake-croc shoes to accomodate my foot or in my mobility scooter, I'd damn well better get some excellent customer services - none of this attitude as though they figure I'm wasting their time, can't possible afford a cell (hello, I've seen people who are on and off the streets with them! Get real!) or I'm just not dressed cool enough to be in their store or something. I mean REALLY.

So, I just won't put up with that and I hope no one else does, either.

Anyway, so I stopped to speak to a young man at the counter, after waiting for the other person working there, a young woman busily activating a new account for a man with a family. She seemed nice and competent, so I was happy to wait until she was done, but I guess other guy finished his break and appeared. And you know what? He was extremely efficient and professional, yet struck an excellent balance of... well, I wouldn't quite say friendly, but more like the consummate service professional. Friendly would imply he was being all chummy, which he wasn't; I don't mind a little chummy if its sincere and that person's style, but his was very focussed with listening to me and when I described my difficulty in deciding which of two plans to choose from, he questioned my usage and was able to quicky and accurately recommend which of the two to go for. See?! THAT'S what I'd wanted! Someone who LISTENED and could make an accurate, professional recommendation!

Turns out I can switch to the 2nd option, which has 'more' to it, but also costs a bit more, but would not be able to switch from option 2 to option 1 as option 1 was about to become unavailable with the new month of March. Well! Decision made! Check! Had my phone in mind and also knew which little offers they'd said they'd throw in online, so I asked if they could match, which he did. Done! Sign me up! So after a couple of months of dithering about over this (yes, it's really that important for me to make the 'right' decision for me) I finally had what I wanted, the purchase was literally next to nothing and I was able to take my old cell phone number with me, as I'd grown rather fond of it. Yippee! I felt so accomplished, finally. And I was glad I'd taken my walker as I was able to sit while we went through the process (they actually had bar-type chairs for that purpose, but they would have been too high and hard for me to use).

Feeling all impressed that I'd gotten the RDSP banking done AND the cell phone squared away, I decided I'd go to the massive movie theatre located across the mall parking lot and see some fluffy Hollywood silliness, just for the sheer fun of it (I'm usually prone to chosing foreign films and quirky things a little more 'indie', but was feeling like some very lighthearted entertainment). There were a couple of options, but I chose the one that coincided with my arrival time the best and bought my ticket (even that was 'interesting' since I used the auto ticket machines, which usually has one line and you use the next wicket available, like at a bank. But the middle machine was broken, which seemed to indicate to people they should form separate lines! Then, since I had a male couple behind me, there was no room for anyone else to stand inside as we were at the exit/entrance doors. When a bunch of people decided that our line wasn't really a line, they came in beside us and made motions as though they were heading toward the 'empty' machine, to discover it read Out of Order (yes, people, we really were just waiting for the other one because it looked more 'fun'. Idiots). THEN those jerks tried to go stand behind the other machine, forming their OWN line. One of they guys behind me was like "HELLO! Yeah, WE'RE the line! Here?!" LOL. Right on! And when the people at the far machine moved away, he firmly said to me "You're next - to go right ahead" and gently nudged my arm toward the now-free machine, LOL! Awesome! Just in case, I made sure to push that walker with determination, in case one of those line-jumping idiots thought they'd just slide on in before I could get there - if they did, I'd have run them over. I could hear the men behind me cattily (but rightly) complaining about people like those line-jumpers. How RUDE! LOL.

So, I got myself a ticket and some popcorn (had I not my walker but just a cane, I couldn't have carried my popcorn) and went and saw what I'd chosen - a silly, lightweight Hollywood fluff movie. Not really offensive, not horrible, but not something I'd recommend paying $11 for, for sure. BUT I'd gotten what I wanted: 90 minutes or so of light, carefree entertainment, without stress, just popcorn and chocolate munching (shh, brought my own chocolate 'cause theatres charge like $4 for that!! Insane!).

I was then able to catch an easy bus home as the needed route comes right into that mall, so I was home quickly and easily apres-movie. Whew!

Not sure what I did Sunday, except sleep in a while. Yay for sleep.

Monday was the first day of my Pain Clinic Pain Education & Management class! It's from 1-3:30 each Monday, Tuesday and Wednesday for the next four weeks. Each day has two different topics and features the staff of the clinic, mainly by our OT and social worker, but also with visits/talks with staff physio (yesterday was first of 3 of those talks) and also a psychologist.

Our group is quite varied and I think there are two other people who are pretty close to my own age, the others being mostly older, though someone who missed the first day also looks quite young, younger than myself, perhaps 20s or so. I like this; I enjoy the variety of perspectives, etc. and I've always tended to have more in common with people a bit older than I have been. Then there are the ones my own age (or so) who I just can 'click' with; those are things I cherish...

Anyway, so far it's been good, I feel. We're getting to know each other and it's the first time I've been in an environment where everyone there GETS chronic pain - and that is an amazing thing! Like when we were asked to introduce ourselves and say a bit about our conditions, despite being the only person there with CRPS (as diagnosed, at least) I could see people nodding in understanding with what I'm saying. It felt really GOOD to be able to say that and know that everyone there would understand from their own experiences!

On Thursday, I'm being sent for an MRI that the doc workers' comp sent me to - the one he said he just needed to do so it didn't 'niggle' in the back of his brain... it's to check to see if there was any damage to the artery which runs down the back of the leg. He said very clearly that the chances of that were slim-none, but he just had to try - and I readily agreed! - as if it was that slim chance thing, it might be something which could be repaired... which could really take care of much/all of the CRPS problem. Again, VERY slim chances, he said clearly, but I'm in for checking!

Also, before that, I will go in for an observation of an intake for the Disability Advocacy Program I just took volunteer training for with local, awesome non-profit TAPS. I'm quite looking forward to being able to help with this program, although I've been concerned about fitting in time to do so with possible upcoming obigations - like workers' comp possibly yanking me from my current pain program to take their, more intensive one. I believe it's pretty much full-time, which I honestly don't think I could handle. I mean, HELLO - when I was working only 15 hours per week last year, I was EXHAUSTED and unable to concentrate much of the time. Not to mention, I could never get comfortable sitting, then I'd stand or walk a tad in the office which just hurts my foot/leg... argh.

Well, I shall cross that hurdle when it comes. Perhaps with their slowness to move, wc will allow me to finish what I've already started at the hospital clinic! Sheesh!

In other news, this morning I received a (manual) wheelchair loaner from the Red Cross, so I can plan my trip to Vancouver and this is something that folds up, fitting into a car - and came with a good, comfy seat cushion on it! Whoohoo! Thanks for the suggestion, Donimo! :) It has adjustable anti-tip bars in the back, and the armrests are removable, but you can still leave the clothes protector part on while taking off the armrests. PERFECT.

Also, because I am a *girl*, I noticed with glee that the wheelchair is PURPLE! In fact, it's quite an plummy sort of purple, really. Yay, fun!

So now I can plan my trip knowing that I'll be able to shop or get to a restaurant without "over-doing it" and then being unable to do much at all. Whoohoo!

Now, if workers' comp would get ON it and give my all that dang money they owe me from all these loonnnng months, that WOULD be nice. Funny, I received the Tribunal decision in January, which said they owed me a written plan within 45 days. That deadline was about 2 weeks ago. Time to chat with my new adviser/lawyer!

And now I'm off to get ready for my class this afternoon. I'm pleased I've been able to fight hard enough and long enough to get some of these good things finally happening... but honestly, it's SUCH an energy sucker to have to keep dealing with those people at workers' comp! Come ON. How can you sleep at night when there were countless months where I had to choose whether to pay a bill or EAT or buy the medications I NEED to function?! For SHAME those people who work so hard to save the company a buck while honestly-injured, deserving workers - AND THEIR FAMILIES - suffer! For shame!

Know I'm NOT the victim here and will not allow your crap treatment of me anymore!

Now, off to my lovely, supportive pain class! And it's just become very sunny and bright out again, like Monday (Tuesday was grey and cool). So nice to see that warm sun. :)

Hope the sun is shining on you all, literally or metaphorically.

PS Apologies for being a bit behind on reading some of the wonderful blogs I read, listed here on my blogroll... they do tell us to clear our schedule as much as possible while at the Pain Clinic, but I've had one or two other SOMEthings most days this week... plus a sometimes-sullen teenager to look after... I've run out of time/energy to sit for long at the computer. Just so you know, I plan on having a catch-up-a-thon very soon and am not intentionally neglecting you! (smiles)

Successful 2nd Outing & Opening an RDSP

2009-02-28T10:41:00.000-08:00

So, yesterday marked my second attempt at utilising our city's public transit with my scooter to head downtown to visit my friend, her sister (also a friend) and their babies, who are only about 1 month apart in age - which is almost 5 and just over 5.5 months! Cute!!

I was able to board this bus, park facing the rear (which means no tethering required) had a nice chat with a lovely eldery woman using a power wheelchair (we compared wheels and their pros and cons) and, best part EVER: the bus driver was SUPER welcoming and happy to have me onboard!

Prior to boarding, I could see that there was already a wheelchair parked in one of the accessible spaces so I asked the driver if there was room for me, too. She replied there was plenty of room and to just hang on while she lifted up the fold-away seats to make room for me. When I boarded, I saw the other lady had the easy park facing rear option and the driver found one of the seats which usually flips up did not on this bus and she asked if there would be enough room for me to turn around. I said I wasn't sure, but would try. She then said I could also face the rear, which I agreed might be easier, but she wondered if I'd be able to back out...

Confident in my excellent parallel parking skills, but unsure about my newness to the bus and backing down a ramp onto the sidewalk (!!), I said I'd manage - and hoped I was right. The other boarding passengers were most kind, waiting until I was out of the way to board, and no one seemed the slightest bit impatient to have me board. Whew!

I asked the other chair user if she was also headed downtown and she was, so I suggested she disembark first to give me some turn around space, to which she was happy to oblige. She turned easy as pie and sailed on out; I worried about playing bumper cars...

Turns out I need not have worried; the woman and her small child who'd sat on one of the fold away chairs moved away, explaing kindly to her child that they needed to give me room. As I attempted a 3-point turn to head out of the bus, the driver called to see if it was ok for me. With only one small extra adjustment, I made it clear of the seats and headed for the front door and its ramp. When my rear tire caught slightly on the side wall of the bus turning the corner to get out (which often happens in the older buses; the only seemed to design them to fit manual chairs and nothing more) the driver noticed and said "Don't worry, take your time, there's no hurry" which made me feel SO relaxed as I used my body weight and the scooter controls to slip free of the rubber tire's grip on the wall. She repeated to take my time, etc, as I headed down the ramp carefully and further, very kindly and sincerely wished me a wonderful day.

OMG! What a completely different experience from last time! I wasn't awkward and embarrassed, but felt welcomed and... well, NORMAL!

I promptly hurried to the rear of the still-stopped bus and noted the bus number and route time as I fully intend to call transit and report an EXCELLENT driver for a change! Whoohoo!

I was then able to meet my friends and their babies, have a nice visit and drink in a local shop and we stopped by our former employer's to show off the baby and say hello quickly; hit up our favourite vitamin and supplement shop to get a few essentials...

THEN, having met up with my son during this time, who was flying on a harbour plane to the mainland for the first time to visit friends from his wicked-cool summer camp, I was able to accompany him down to the harbour terminal and sit outside while watching his plane taxi down the harbour, wait for clearance, disappear behind the buildings to reappear seconds later high in the sky!

THEN I was able to get some more girlie-smelling body powder, which I'd run out of, THEN I scooted (why bus back? my scoot has range and it was a sunny, if chilly, day) toward my place to stop at the shopping mall as I'm in the market for a new cell phone - and likely will change companies at the same time.

THEN from shopping around the mall, I was then able to scoot myself home (only 3 blocks away) and still had plenty of 'juice' left in my scooter!!!

OMGosh, again! I would have only been able to do a TINY portion of that, even if being chauffeured around between stops in a car, while using my walker, without the scooter! I felt like I'd been out of the house for DAYS when I arrived home, when really it was around 5 hours or something?

Ohh, the freedom!

Yes, I do know VERY well that people with my disorder, CRPS, are told to walk/use the limb as much as possible, often called 'use it or lose it' and believe me, I certainly DO. However, since injury nearly 3 long years ago, even when I push myself as far past the pain as I can and then some, I STILL cannot tolerate anywhere near that kind of standing and walking! Not even close!
And I arrived home without facing a nasty pain spike which surely would have involved many extra pain pills I'd rather not take - which also tend to do very little in terms of reaching that kind of pain, anyway.

May I just say how very GRATEFUL I was/am feeling to be so gifted to have this wonderful tool to utilise?!

When I was asked recently by the latest doctor who assessed me, he asked what my hobbies and activities are/were. I said I've never been a sport person, per se, but what really comes to mind is WALKING. See, the city I live in is wonderful for wandering around. I used to spend the day wandering around downtown before one of our large, outdoor community events, like Symphony Splash - a lovely summer event where our local symphony plays a variety of music from classical to kids pieces, finished up with fireworks in time with music! - or the wonderful festival of lanterns, called Luminara, Canada Day festivities(July 1st - similar to the USA's Independence Day on July 4th, sometimes called Canada's birthday) and so on... since the downtown area is closed to cars around these massive, everyone-welcome, public events, it's easiest to bus downtown, maybe take a picnic, grab a seat on our Provincial Legislature's lawn ahead of time and enjoy an afternoon and/or evening of fun in the outdoors! It's not like I took in all of these, every year, but occasionally have done so and miss the ease of which I once was able to.

But as you can imagine, this involves HOURS upon hours of walking, standing, more walking and... did I mention, walking?!

I'm not sure how comfortable I'd feel navigating crowds from the physically-lowered stance of a chair user (I've seen too many examples of dimwits who don't watch for the many persons with disabilities who at times will trip over them! also had this happen to my son in his stroller when he was little!) but at least the scooter would provide me the stamina to do so, should I wish.

So, again, I am grateful to have this wonderful tool to help me get out into my community more often!

Speaking of which, I must be getting ready now; I have an appointment at my financial institution to open one of the newly created Registered Disability Savings Plan *that have been created by the federal government to help those persons and/or their families to save money - and have some of the funds matched by their government, too!

Briefly, because I'm not the least bit savvy with these things and also, it is rather boring to me, you can deposit savings, which the government will match your contribution in grants and bonds - actually, $3 to $1 on the first $500 then $2 for every $1 on the next $1000, so up to $1500 in total where they will significantly increase your contribution!

*If you're into reading these sorts of things and actually clicked on that link, I'd suggest clicking on the link/s under Related Information at the bottom of the page which explain the contributions by the government. All I can say is yay! They will turn my meagre first contribution into several times more! How can that be bad?!

Well, I'm off to chat with the financial planner lady about my sad lack of finances... lol. And hoping that rain holds off!

Something I was afraid to write about; Confusing WCB Hoop-jumping stuff & a lame-ish Sailing Metaphor

2009-02-25T00:33:00.000-08:00

Well, I had mentioned it before, I believe. Since receiving the Tribunal's instructions in January, workers' comp was made to re-open my file, including reinstating my wage-loss benefits and reimbursing my prescription costs (this sounds like a rather large sum, of which I will be required to repay the federal government the assistance they provided me when WC should have been!) and, because the Tribunal was not aware of my (subsequent to application to the Tribunal) diagnoses of Complex Regional Pain Syndrome (CRPS). Their instructions included further assessment for confirmation of the suspected (at the time of filing) diagnosis and forming a treatment plan, if possible.

This means that WCB wanted to send me to a 'specialist' in CRPS who would perform a specialised assessment, including verbal interview, physical examination and the (hopefully in agreement with the other docs') diagnosis - along with suggested treatment plan(s).

I had a pretty high level of anxiety at some points before the appointment Tuesday morning, heightened by hearing stories from others of their experiences with similar - and even this same - doctor, who technically do not work for WCB, but are the doctors of choice for them...

What I'm saying, I guess, is that I've learnt a certain level of mistrust of WCB's actions, after much disappointment from struggling all this time to get some recognition and TREATMENT.

I finally was able to speak with the new worker's adviser (a legal advocate paid for by gov't) who will take over my file from my adviser, who went on maternity leave. There was another concern; would this person be nearly as great as C was? She was always so kind, helpful and patient and encouraged me when I wondered if there was any point continuting with the appeals process. Turns out he was lovely, very reassuring and very ON things, despite admitting apologetically that he'd not yet had the chance to review my file thoroughly (he's moving to town next week, while concurrently taking on this caseload; I'm suspecting that's more than a few handsful of stuff!).

I spoke of my concern that, despite having a few doctors - specialists highly regarded in their fields - who agreed on my diagnosis, that this doctor that WCB would have me see would (due partly or more to the stringent criteria WCB holds to get the diagnosis of CRPS) as I don't fit totally neatly into the 'classical' progression/presentation of CRPS, despite the initial post-injury signs and symptoms being 'textbook' CRPS according to the Pain Specialist...

Anyway, B, the new adviser, reminded me that the chronic pain IS confirmed with WCB and that won't change. If this doc disagreed with the diagnosis, that we still had other very strong opinions from excellent sources otherwise and that these things often worked out fine in appeals. Just like this Tribunal, where it seems you have a fair chance at justice - but it can take months and YEARS to get there! Hence my stress...

Tuesday morning, despite my plan to be up early (slept little due to stressing) I snoozed through my alarm for an hour (!) and was coming out of the shower when my friend - who although he was sick and planning on staying home from work - arrived to take me to the appointment.

Originally I was going to have Ian accompany me into the assessment/appt. but since he was sick and my adviser told me to 'go with the flow' and to 'just communicate clearly the findings of the other doctors', I suddenly felt much more at peace with the impending Big Appointment.

So, in I went to the office, to fill in some paperwork, knowing it would include a small assessment that WCB would want to know about my mood and outlook and coping and such (!!), I just did my best to not feel paranoid and to do what I believe is right and will ultimately win in the end: to be honest.

The doctor was pretty casual, friendly and began asking me some very good questions and we spoke at length about my injury, work history and current situation and pain and symptoms. He then performed what I've come to conclude is a fairly typical neuro exam, as I've had several similar ones. However, he was more thorough in feeling my legs for temperature changes/differences which he said were clearly evident. (Before now, despite the diagnosis, the other docs were unable to note a real temperature difference. I should say there seems to be no diagnostic assistance for this where I live; not even a flat thermometer. It's simply the doc feeling both limbs for comparison!).

He did the sharp, pinwheel thing, which of course hurt. He checked for stiffness, swelling and all the other various criteria involved with confirming a CRPS diagnosis.

At the end, he had me sit down again from the table where he checked my reflexes, etc. and said "Well, you have the criteria which fits into WCB's definition. You have CRPS. Whoohoo, right? So what now?!" I was like YEAH, what now!!?!

But OMG, he found the evidence the needed and CONFIRMED MY CRPS DIAGNOSIS for workers' comp!!!

This means I don't need to go through a possibly lengthy and surely stressful appeals process to argue why the other diagnoses were accurate... no!

He was kind, professional and best of all, treated me as a human and listened to me, rather than as though something on an assembly line or just another lump of flesh to poke. I mean, when I would involuntarily jerk away my leg/foot in pain to his gentle prodding or poking, he would say "sorry" each time - like he actually meant it. I've seen other docs who I assume gave up saying it, perhaps they've just become hardened to it or? Don't know; this guy said he's been doing it for 20 years, so...

Anyway, I digress as usual. :)

He even came up with an additional test which he said he didn't want to get my hopes up about, but since he thought of it, he just had to check it out so it wouldn't 'niggle at him' or however he said it. He wants to order an MRI of my knee to see if there is any damage/issue to the major artery there, which could cause all of the problems in my leg. He was very, very clear that it was a more than slim, tiny chance, but he just wanted to rule out the one thing that popped into his head. I readily agreed that any chance, even tiny, was worth pursuing for sure!

He also spoke about his concern, as the other doctors had, with the length of time since my injury and, well, now. Which will be 3 full years in around 1 week from now. THREE YEARS.

They say CRPS has the best chance at being minimised/stopped/prevented if treated correctly in the first few months. Like 3 or 4, I have read most often. Crap for me.

BUT, since I don't have some of the radical changes like severe muscle atrophy and stiffness and so on, that perhaps I will respond well to the treatment. He also spoke about the fact that for some, CRPS seems to just... spontaneously stop and no one knows why. Hopefully I'll be one of those people but, since it's already been 3 years, perhaps it's something that will be ongoing. There's no guarantee.

I also told him of my efforts to get into the local Pain Clinic at the hospital and that I'd already seen an anesthetist there, who agreed with the diagnosis, and have my first nerve block scheduled in the next few weeks. I'm also registered to begin their 4 week Pain Education/Management Program beginning next Monday. Because WCB has a contract with the rehab clinic where this doc works, I figured they might well make me go there - which won't necessarily be a bad thing; it sounded more intense, but also includes a returning-to-work component, which I think it not really a focus of the hospital's offerings...

Of course, I realise I'm never 'done' with WCB; they'll still be very keen to see how I respond to treatment, what my capabilities and limits are (therefore determining how much I may have been 'disabled' by CRPS and my ability to return to work and no longer require wage-loss benefits).

Ahh, it's all a sad, money game with WCB, but I've realised I let go of a lot of the anger I felt toward them. In the end, it did me NO good, just stressed me out and it wouldn't change anything for the better; this is a large machine of a corporation and that is how they work. It sucks, but I have clung to the truth and refused to give up my reasonable (I think) expectation that they should help me appropriately. Nothing outrageous, just whatever is in their regulations for my situation. Nothing more, but nothing less.

What now? Still playing that waiting game: right now, it's waiting for them to get the plan that this doc from today is going to work out (he said he needed to "put on his thinking cap" and figure out what would likely help me the best at this point - then he needs to report that to WCB). Then, they also need to report to me what their plan of action includes as well as determine the correct amount of my 'back pay' for wage-loss and prescription coverage. I know for sure I've spent over $3000 Canadian just in the last 1.5 years on medications for this alone! Money I didn't have, I might add - so I'm REALLY looking forward to paying off the debt I incurred paying for the only thing which gives me a decent quality of life...

Am I happy? Yes. Relieved? G*D YES. Again, I feel cautiously optimistic; there will likely be little things that WCB throws at me here and there but... despite my... hesitancy to believe how 'independent' this doc might have been, he did say something very interesting near the end. It was something like (when referring to his reporting to them) that he thought there would be a 'lot of good things coming finally' or something close to that. I presumed he meant that with this confirmation of diagnosis that I would really be heading into some smoother sailing, so to speak.

Welcome, oh, welcome, calm waters. How very glad I am to see you. But also know that should storms kick up again, I am ready and I'm not afraid!

Here I am...

2009-02-18T15:21:00.000-08:00

Not writing because I have wondered if I should just write to keep posting, or if it's better to wait until I have something I feel is of interest to say... lol.

Well, good things are afoot, har har, pun intended!

I attended the orientation for the hospital pain clinic yesterday (not the one workers' comp will want me to attend, that is, their boot camp version, aimed at getting you 'better' and back to work, pronto!). It was what I had wanted and needed when I went to the doctor last month, but didn't have that information! Sheesh! I told the Occupational Therapist running the meeting how I'd already been in for an assessment and I was coming at this a little backwards. Seems they need to work on getting this info out BEFORE people like me get scooted in... I mean, it was great that I got in so quickly (due to my condition being a very high priority in their triage process) AND it would have been great to hear about all the wonderful educational and support groups that are available...

Like, I can attend a twice-weekly Core Strength and Yoga class! There's a 4 week-long pain education and management series (which I get to start March 2nd!), a pool physio class, which is personalised (NOT held at the city's warmest pool, but they suggest coming once, getting your exercise routine and then attending the warmest pool if the warmth is something which helps you - it certainly is necessary for me as cold=bad!).

There are several other ongoing classes like Tai Chi, an Art Club, a series on Sleep Hygiene... the classes are on a drop-in basis, the others are a series to attend to get the full benefits and all of them are FREE! There is also an awesome-sounding series held over 6 weeks on Meditation and Stress Management, which I'd love to take, but I suspect I shall be in Boot Camp by then... er, I mean the 'much more comprehensive services provided by the workers' comp-contracted physio place".

I'm REALLY hoping to meet someone in person who has the same disorder as I do; I know that might sound a little weird and while I certainly don't wish anyone else has it, I've been told that it's quite... remarkable to connect with someone in person who really knows from experience just what living with a condition like Complex Regional Pain Syndrome is like.

Whether or not I do meet another diagnosee (lol, is that a word?!), I'm very lucky to have connected with a few other CRPSers online who have helped me immensely to not feel so... well, crazy at times! It can be so lonely when you have a disabling condition which too often is invisible to others... when the pain comes out of nowhere but is so severe it truly feels like someone came along and randomly banged a large spike through your foot (or other area) - but you can't SEE anything! - it CAN make you feel a little crazy! Hearing that other people have had the same experiences has been... well, I don't want to say 'normalising' because this is really NOT what I would call 'normal', but my point was at least I knew it wasn't 'just me'!

I am also scrambling to plan a trip to Vancouver for the end of the month to visit a few friends who I get to see so rarely, even though Vancouver is not that far away - it does require a ferry ride (which isn't too cheap if you want to bring your car; I don't have a car, which might also pose some issues...) and I can even take my scooter over! What's more, I've received a pass from BC Ferries due to being an Official Disabled Person which allows me and my attendant to half-priced fares for our persons, but not a vehicle.

Now, I have been offered a ride from the ferry if need be, but the scooter isn't really vehicle-friendly without some kind of ramp or lift. So there's my dilemma: do I arrange a car (either my friend taking me over or a friend on the other side picking me up?) and NOT bring my scooter, therefore greatly limiting my ability to see Vancouver's many sights? OR do I leave the scooter, enabling easier transport, but leaving me very little ability to get to, say, one of the zillions of awesome restaurants near where one of my friend lives - in the lovely West End/Davie Street Village area?

I can also stay at her place (I'm welcome anytime, she says *warm fuzzies*) but her building is a heritage one, which involves a few stairs... and my scooter weighs about 175 pounds and that's without me in it!

My other friend has also offered me a place to stay. She lives farther out, in the 'burbs, in New Westminster (just naming names in case anyone is bored and wants to look on a Google Map or something). She has a house with garage where the scooter could easily be charged... but I have to GET there, which means trying my hand at public transport, including the SkyTrain and also a city bus, it sounds like.

Aiiieee! I've only taken the bus in my own city once, and it was not really very much fun! Only our newest buses are really roomy enough to easily accomodate a scooter... I don't much fancy the idea of being somewhere I'm not really familiar with, trying to navigate as a newly-wheeled person, if you know what I mean!

More recently, my friend's mom offered us the use of her car for the weekend to go over there. This requires convincing my friend that a weekend in Vancouver visiting *my* friends is something fun! LOL. Also, it means NO scooter again, but at least I could get dropped off somewhere, presumably.

Also, since at least one of my offers of a place to crash houses a cat and my friend is horribly allergic, I don't think that would work, even if my friend didn't mind a stranger crashing at her place with me!

This would be where renting an inexpensive motel/hotel room would come in handy...

Um, this is why I plan to purchase a minivan as soon as I receive my back-pay benefits from workers' comp! I will get one of these wonderful crane-lift devices (warning: page has video on it) which hoist your scooter (without you in it!) into the van for you, just as easy as pushing a button! Fabulous!

I. CAN'T. WAIT!!! Oh, the freedom!!!

But that's not about to happen before the end of the month, methinks, so... drat it all.

I'm sure you're all hanging on bated breath, dying to learn of how Lisa will manage to make her seemingly-simple-to-most-folks foray to The Mainland. I promise to update you if and when I figure out what would work... sigh.

I have only just over a week to get there, nevermind sorting it all out, so I'd better get on it. Right now!

Gorgeous, Sunny New Day

2009-02-09T14:10:00.001-08:00

Literally and figuratively!

A HUGE heartfelt thank you, again, to all who commented on my last post; just knowing you cared enough to write me with such wonderful suggestions and words of support means so much to me!

This morning, I contacted the advocates' office here (gov't paid lawyers to help you fight work comp!) as my previous advisor went on maternity leave. I will be getting a call back from her replacement ASAP as he moves into the position in the next couple of days. I did explain to the office assistant, who answers calls and general questions, about what was happening. I also explained my concerns and suspicions about this doctor and the need to even see him, etc. She said I sounded like a lawyer, using all the terminology and ways I questioned workers' comp's plans, etc.! Pleased, I said rather wryly that I'd had a pretty steep learning curve but that maybe I should pursue a law degree after this! She said people (like me, injured workers) have done it before!

Now THAT'S got me thinking! When I was a teenager, I thought for a while I might want to be a lawyer, due to my strong, innate need to see some justice in this world. I moved away from that idea, worrying about things like representing the 'wrong' person, a guilty person, or whatever. I now know about more options and about how great the need is for people willing to work for (the much less monied) advocacy groups... but I've been considering social work, and it's not necessarily known for paying all that well, either! Money is not my goal - HELPING people is my goal.

Hmm, so much to consider!

We do have both options here at our university in town and I can take the first two years of a degree at our excellent local college, which costs half the price and has small, personal class sizes and a friendly campus, to boot! You can also do an Associate's Degree in those 2 years, which gives you priority program admission to the uni, when you transfer over!

My plans now include to go check out one of the info nights the college regularly puts on for potentially interested students... :)

Sigh, doesn't this post compared to others just demonstrate all too well the emotional (and physical!) rollercoaster that is CRPS - or for that matter, probably any chronic illness/condition! Some days are just horrible, where I'm in so much pain I wonder how I'll ever do anything with my life except pop meds faithfully and adapt my life as best I can to move on... barely.

But I'm an optimist at heart and demand to be treated fairly by this horrid workers' comp system! I'm a PERSON, dammit, with an honest-to-goodness real, scary, painful syndrome which NEEDS treatment! Moreso, I DESERVE appropriate compensation in terms of both treatment, including medications, and monetarily as well. I'm not abusing the system, I don't have unreasonable expectations, I just demand to receive what I'm entitled to for my workplace injury-induced condition, as stated in their own policies and procedures!

Much love and support to everyone who comes this way, caring enough to send their caring support to me.

With eternal gratitude,

Lisa

Guess I Spoke Too Soon

2009-02-07T09:38:00.000-08:00

... when I said nothing to stressful is going on. Sure, it could be worse, but it could also be better.

Received another 'oh-so-sunny' sounding phone call from my workers' comp case manager yesterday, telling me their medical advisor had, indeed, said to send me to see this certain doctor who is like "THE doctor on the island" (to see for CRPS).

According to my Google searches on his name, he is THE doctor the WC sends every client to to 'prove' they DON'T have CPRS!

She blathered on about how wonderful it was where he was, how nice HE was, etc and then finally ended with 'OK?' I replied "Well, it's not like I have much choice, do I?"

She seemed all confused by this. So I said, carefully "It will be THREE years next month that I was injured and in that time all I have done is fight to get a diagnosis and then treatment. I'm telling you now I'm just getting into treatment at the hospital pain clinic and you're telling me why this one is so much better. Is this more about diagnosis or treatment?" I also add.

She quotes my decision that they are to confirm diagnosis and determine a treatment protocol, if possible. I tell her that I have TWO diagnosis, both confirming CRPS. She rather overly nicely tells me my Spec. #1 said (quotes, as if I don't know) that I have symptoms of CRPS, but it's definitely neuropathic pain tied to my work injury. It's my understanding the ONLY reason he said this in his med-legal report was because of my frequent lack of objective signs of CRPS (things everyone can see) versus my subjective symptoms (what I 'claim' to feel) and he KNEW that WC wouldn't let that fly; he was trying to get me somewhere and, frankly, he was right. However, they only have that opinion on file because, of course, they wouldn't take info from anyone else and haven't yet received copies of subsequent doctors' reports...

I tell her firmly that I have indeed been diagnosed with CRPS TWICE, by Spec #2 and the pain clinic doc. "But they're anesthesiologists. This doctor knows much more...." blah blah blah. Yeeeah, whatever.

(According to their websites OWN information, the particular assessment I'm being sent in for is able to be performed by physicians who have a Diploma in Sports Medicine or Occupational Medicine. When I looked this doctor up on our province's College of Physician's database, it lists NO specialty for this guy, nothing more than that he has an MD.)

Now, you'd have to know me well enough to know that I am ALWAYS polite on the phone, ALWAYS polite to people I don't know and can NEVER manage to be angry or rude, even when people are first these things to me; it doesn't come to me to do either until after the fact.

Yesterday, I was BOILING mad, people! I actually said something like "And I'm sure this doctor isn't there to make sure I 'don't have CRPS', right?" or something to this effect. By this time she's actually stammering a bit, and answers, seemingly surprised, that "He has no vested interest in not diagnosing CRPS" going on to ask why he would. OH, COME ON, do I have to spell it OUT?! But no, I hold my tongue, deciding it's best to restrain myself from accusations at this point as I don't suspect it will do me any good. She's just the messenger at this point, and has been told to send me to this 'nice, approachable' doctor who will assess me and decide whether I get their option for 'just' neuropathic pain treatment of if it's CRPS treatment, as they vary somewhat.

BULLF'INSHIT, I feel like screaming! I know full well this hack is getting paid by the amount of people that do NOT get what she's acting like doesn't exist: someone with neuropathic pain is deemed to have only chronic pain, which nets them a 2.5% 'award' of their montly income at the time of injury as 'compensation' for the chronic pain. Doesn't matter if it's in two digits or full body, from their regulations. However, someone with CRPS will have their case appear before a panel who must collectively determine (after more assessment, I'm sure) their percentage of total disability - in other words, having CRPS confirmed will cost them a LOT more money to 'compensate' me. Now why would they have ANY interest in making sure that doesn't happen for me?!

What I also don't say but BOY was I thinking it is that 2.5 years ago when I complained about this sharp, nasty pain in my foot when I really should have been better or almost all better, and that the PT wondered if it could be plantar fasciitis, she YELLED at me, accused me of either making it up or having had this before and trying to get away with something... !!! I was too shocked to say much more than "That is what the PT SAID. I've never had any such thing, ever!" So she rather threateningly said she was going to talk to him, hmmph! I said "GOOD!" Not 10 minutes later she called me back, calm as anything and said she was 'prepared to accept what he (the PT) recommended'. That's it! Not a word of apology for calling me a liar or basically accusing me of fraud! Nothing! Calm as though we were having a friendly chat, like nothing had happened. I was still in too much shock to say anything... but yesterday I wanted SO BAD to throw that in her face and make her apologise to me, 2.5 years after the fact!

But, for various reasons I decided to hold my tongue (biting it?!) because I just am not sure making an outright hostile conversational environment between us is going to help me very much. Funny that. THEY can get away with this kind of SHIT, but if *I* were to so much as raise my voice, I'd bet they'd threaten to cut me off, right then and there!

SO MANY KINDS OF INJUSTICE! SO NOT FAIR!!!!!!!!!!

UGH, this whole thing makes me sick to my stomach, literally. But hell and damn if I'm not going to continue to appeal them on every last damn thing they try to sneak by me! NO WAY! Further, I now know how their little game works a little more and I will be SURE not to wait one moment longer than necessary before starting an appeal for any decision they make which I disagree with!

But between you and me, people? I'm SO sick and fucking TIRED of these low-level excuse for human beings and their twisted little games which HURT PEOPLE, people like you and me.

Now, my CRPS (and let's not forget, even Spec. #1 clearly has told me REPEATEDLY that I DO have CRPS) but unfortunately I'm one who doesn't consistently present with those almighty objective signs that insurance like WC insist on seeing plenty to believe. I was rather hoping that by getting into the pain clinic which I HAVE gotten into, that by seeing the PTs, etc. several times per week, that they could start documenting when/if they see those precious but, in me, fleeting/changing signs.

What ARE they anyway? Things like temperature changes, for example icy cold over the CRPS area, compared to the other limb or even another section of the limb. I have this ALL the time but the few times doctors have checked for it, it just happened to be unnoticeable (like, the time I went to Spec. #2 but because I can only stand wearing 'croc' type shoes with holes in them and it was trying to snow out, both my feet were equally freezing cold!). WHY me?!

Also, I'm 'unlucky' in that my leg has NOT swelled up twice its size, gone dark purple or looks like it's covered with a weird pattern of veins that have something other than regular red blood in them...

Of course, apparently we don't have thermography here, a device which reads the temperature changes on a body area showing temperature as a coloured terrain 'map'. No. My docs have relied on touching me with their fingertips on my leg briefly (like a second or two) then the other leg. Yeeaah. While that might suffice for mom-temperature taking, since apparently 1 degree Celsius is enough to indicate pathology here, I DO wonder if they're going to be able to accurately detect ONE degree - Celsius (or centigrade, not Fahrenheit).

Sorry, I am ranting, but this whole thing REEKS of corruption and it's sitting on me like some sticky massive spider web of eeeeevil that I can't scrape off myself. :(

On the positive, I do have some idea of what I'll be going into with this appointment, but I have no way of controlling whether or not my body will decide to show Objective Signs to this new doctor or not. So, I assume if he says 'nope, not CRPS' then I must start appealing that, which WC will review and agree with themselves, then I'll have to send it to Tribunal. Again. Which will surely take MONTHS. BUT, hey, I'm not going anywhere, unfortunately.

Oh, and by the way, WC expects your pain treatment, should they send you to it (lucky you) will consist of 6 hours per day, 5 days per week and will involve such things as 'tapering of or discontinuation of opiates and/or hypnotic-sedatives, if indicated'. Yeah, I take it to mean that they will say 'Ah, suck it up! You don't need THAT many meds! And we're not paying for them, they're just 'hurting you' so we'll be taking those away!'

Interestingly, although I've seen 3 doctors who all took down my list of current medications (two of them being those 'lesser qualified to diagnose CRPS' anesthesiologists') not one of them made concerned remarks about the types of amounts of medications I am taking! I'm guessing I could be on a LOT more, which actually might help me be in less pain since most often what I take does NOT come anywhere near close to offering me decent pain relief... but I don't want to be drugged to the gills.

So, I guess it's off to 're-education camp' where I will also learn I'm not disabled (another thing gleaned from their site), how to just ignore the pain and with less medications, then how to find and keep a job, since I'm totally and fully the same person I was before, afterall. Nope, no difference that I should have this leg issue, none at all - well, especially if they can 'prove' all I have is neuropathic pain! Then there's no reason not to stand in a retail job all day for $10 an hour, I'm sure (though I've more recently made twice this). Nope, no worries about this program AT. ALL.

It's hard to know how much to NOT worry; worry doesn't help us much, right? Yet it's pretty damn hard NOT to worry when I've got people playing dirty games like this, where I don't know all the rules, where their goal (and they do this all day every day) is to deny people benefits and prove they don't deserve them...

But, since they are now on the hook for paying me my wage-loss benefits again (plus back pay) they are good and ready to make sure I DON'T have anything worse and, further, if I don't play along, they will just cut me off of benefits. Period.

It's easy to believe this is just happening to me, when really it's happening to thousands upon thousands of injured workers; not just in my province, but across my country. And your country, too, perhaps. While our government allows their corruption to continue.

Like many things, it's easy to think it doesn't apply to you. UNTIL IT DOES. No one ever imagines they could get hurt at work. "But I have a simple office job!" people exclaim. Yeah, and that simple office job which could cause a repetitive strain injury from typing or even grabbing a doorknob the wrong way can actually be the trigger for someone to get CRPS!

Now THAT is something we should all be VERY aware of!

Small Updates

2009-02-04T15:35:00.000-08:00

But thankfully nothing too stressful going on. Sometimes no news is good news!

I'm awaiting the letter from workers' comp telling me what their plan of implementation is going to be, lol. It is due within 45 days of the Tribunal's decision, which should put it in my hands no later than the week of the 23rd of this month. I am resolving to NOT get all panicked about this potentiality before I even know what it might entail. I can deal with it when I see it. Let me repeat for my own benefit: I CAN DEAL WITH IT when I see it!!! I CAN!

Otherwise, I went to see Specialist #1 on an extremely fortunate last-minute cancellation, when I just happend to call at the exact right moment! YAY for synchronicity!

Turns out that, lovely physician though he is, he is not trained to do the sympathetic blocks I will be trialling, so I must go with the pain clinic doctor (anesthesiologist) whom I already had a consult with. I am certain he's excellent at what he does and does them a LOT, which is reassuring!, but it was so stressful for me at our meeting as there just was not good communication, I was feeling vulnerable and scared, and he just isn't too practiced at explaining what the process would entail.

Turns out there are orientations to the clinic and its many various programs and groups within the Clinic at large. Huh, wonder why no one informed me of this BEFORE! I could have booked a month ago when I saw him or, even better, could have gone ahead with the block THAT DAY (January 6th) had I all the information I feel I need from the orientation! As my son says/types, GAH!

Otherwise, things are peaceful for the time being and I'm so grateful, as my pain levels have been mostly ok but with odd spikes and that has been messing with my sleep schedule - and 'everyone' says how important it is to maintain good 'sleep hygiene', especially when you have a chronic condition. However, I've not seen any info yet on sleep with CRPS, so I shall be looking into that, amongst my other pursuits! (Chronic pain survivors often aren't able to enter REM sleep, so they might sleep for long periods without getting the restorative sleep they need).

I have been taking training to become a Volunteer Legal Advocate for the Together Against Poverty Society's Disability Advocacy Program here in Victoria, BC, aka TAPS. This amazing non-profit organization runs on only a few dedicated paid staff who work incredibly hard, as well as numerous volunteers who do everything from staffing the front desk (which I also do, on-call) to helping with the newsletter they publish.

TAPS provides legal information to people with low-income regarding issues with Income Assistance/Disability Assistance and residential tenancy issues.

I have also just completed training to be a Silent Witness: a trained advocacy assistant who, as the name implies, does not speak or provide direct counsel, but accompanies a client to attend any appointment they might have with the Ministry of Housing and Social Development (MHSD, providers of Income and Disability Assistance). As a Silent Witness, I have been trained how to take detailed notes regarding the appointment which I report back to TAPS' legal advocates who can provide further assistance, if required. This can provide the support a person needs when facing the often intimidating atmosphere at such ministry appointments.

Personally, I cannot say enough about the dedication and level of caring of these fine people at TAPS as I have personally been a client and am also a volunteer. There is an incredibly huge need for this assistance in Victoria (and many other places, of course) and TAPS is the only organisation of its kind offering free, face to face advocacy.

TAPS clients are a range of people, from professionals who suddenly find themselves disabled and without income and/or face homelessness, to people who have been long term income assitance clients.

Although as a single mum I've struggled to educate and employ myself to not have to struggle below the poverty line as established by our government, the simple truth is even at full-time employment, my income often did not exceed - or not by a great deal - what is considered to be the bare minimum to be 'above' the poverty line. In Victoria, where I've lived all but a couple years of my life, the astronomic rents coupled with less than 1% vacancy rate on those rentals mean most families are paying between 60-90%* of their income just for rent. (This is not a statistic I've looked up, but an anecdotal guesstimate based on many people I know...).

Anyway, what I was trying to convey is my enthusiasm at learning more skills to help others in need in my community. In fact, this directly ties into the return to school I am beginning to plan for the (hopefully near) future!

Honestly, the pay can be crap in the non-profit sector, BUT I strongly believe that there is more to life than making the big bucks; and there's nothing wrong with doing advocacy for a time and then taking a better-paying job, too. LOL.

Yep, I'm all about community and resource building and am on my own personal mission to learn more and do more! Nothing makes me more happy than to help, in whatever ways I am able, even the seemingly smaller tasks.

And not coincidentally, learning more about advocacy only helps me in the end as I am learning for my personal situation as I go along! Talk about your win-win situations!

What have YOU done to help someone today or this week, including yourself?! (You must be able to care for yourself before you can help care for others was the mantra I was taught in my social services worker diploma program!)

First Scooter + Transit Bus Trip

2009-01-29T00:28:00.000-08:00

Today I finally decided it would be the day I would take both the city bus AND my shiny new mobility scooter, together, downtown to meet my friend, J, for lunch. I had already been to the doctor using my walker to *walk* (very important for us CRPSers to walk as much as possible, every day, to maintain muscle and to keep away the nasty CRPS spreading issue!) and ride the bus. My pain level was already spiking sharply and I really looked forward to this planned lunch since I hadn't seen J in quite some time...

So, despite my nervousness, even after passing my loading/unloading orientation with flying colours (they require you to load in under 2 minutes and offload in under 1 to qualify; I loaded the first time in just over a minute! Whoo, me!) I was still nervous at the prospect of doing so with a busfull of passengers, a driver kept to a strict time schedule and any number of unforseen circumstances surely waiting to happen.

Taking my Boy Child, new improved 17 year old that he is, we went to the bus stop to board the low floor bus. (Note: there are older low floor/accessible buses and there are newer ones. The older ones are fine for manual chairs and possibly power chairs which aren't too long. Scooters, meh, not so much, even though mine was promised to fall within the parameters set out by transit...). I promise myself to take a deep breath and remember, like learning parallel parking, the part where you mess up is when trying to hurry... then that goes out the window and all is shot.

Anyhoo, so I gamely scoot up the ramp and see that the waiting driver has not told the entire front of the bus to clear out like he's supposed to; there's this sweet looking, very elderly couple in the first forward facing row of seats which flip up to allow mobility aid access. See, I need to clear the sideways facing seats down to the first rows of forward facing seats to barely squeeze into the aisle to execute a 3-point turn to forward orient myself into one of the two side of aisle areas where my scooter can be tethered to the restraint straps. Follow? If your buses differ, just imagine. It'll be good, trust me.

The lovely, very elderly couple (she with walker, he with cane) offer to move as I try to maneuver without asking them to move (I have to work on that part as I'm so reluctant to ask for that sort of thing, poor things...) turning my allegedly doable 3-point turn into around a 6- or 7 point turn... I'm able to do it though because I am the Goddess of the Parallel Park, you see! (No, really! I was tested some years ago and found to have this unusually hugh spatial perception: basically the ability to envision things in 3D, so I can see in my head from all angles how it should all go down... apparently only good for parking and architecture and sheet metal working!?!). Anyway, even with my Mad Skillz, as they say sometimes ('they' as in 'not me, Lisa') it was still dicey... and seemed like 20 minutes, especially after the driver helpfully asks if I've HAD their practice training?! Um, YEAH, see my Official Gimp Trainee Sticker of Approval, stuck unpleasantly to my pretty new wheels, moron?! I assume he was criticising my apparentl lack of speed, but HE was the one who apparently didn't know to clear out the front half of their 'accessible' bus for scooters... and also was getting all aggro about where to hook the restraints, to which I relplied "there are loops hanging under my seat" which there ARE, they are large and black and look just like the restraints he's using! Or he could use the arm rest bars... which also seemed difficult for him 'cause he was getting perturbed, I could tell...

Despite what seemed like 20 minutes, my Boy Child assures me it was (he says) still within the two minutes they declare the Cut Off (he remembered checking his watch to see when the bus would arrive, which it just then did, and then noted again when we were on the bus).

Even more helpful was the guy who called out from near the rear doors "You need one of those electric chairs! They turn around 360 degrees" (as he gestures with his arms).

Wow, yes, thank you! That's JUST what I needed to hear right then, thankyouverymuch!

Y'know, I DID weigh the options of a powered chair versus the scooter style of mobility aid and realised the benefits to both. Chairs do have better turning, tis true, but it was pointed out to me that there is NO protection for my leg - the leg with the CRPS? The one that the slightest brushing can cause protracted, horrific amounts of pain? Like for hours, even days? Yeah, THAT leg! That seemed to be the tipping factor for me: protecting the hypersensitive leg.

Also, the scooters can be cheaper i.e. more likely to be approved by disability benefits... and since I was assured that the sucker WOULD fit onto the buses still, I decided to go with less-people-bumping-into-me kind of safety. Apparently if I want to take public transit, I should have gotten the power chair and some rather large and fluffy pillows to wrap about my CRPS leg! GRRR! I HATE when I make the wrong choice!

Well, perhaps it's not all wrong. After all the stress I put myself through just for a 7 minute bus ride downtown (!), causing myself a large and sudden pain spike (which I realised probably came up because I had unconsciously braced myself whilst maneuvering about/stressing out, with my foot against the footrest portion of the scooter... i.e. I was pressing down hard with my CRPS foot - the one that permanently feels like I live with a large railroad spike stuck in it and my duty is to not irritate that spike any more than necessary). Of COURSE my foot started hurting like crazy! Which in turn causes me leg to hurt like crazy, etc. etc. Not good.

So, while downtown, I make the most of things, stop by my Personal Supports Worker to thank her for helping with getting my new wheels, popping into the library to re-check-out THE book on CRPS/RSD (mine own copy is on its way but I can't wait until then!) and a visit to MEC (Mountain Equipment Co-op), an awesome, co-operative clothing and equipment store where there is a little bit of something for everyone, even those of us who might not be out there sluicing through the powder or whatever... I mean, their backpacks and so on are indestructible I hear and have a lifetime guarantee and stuff! Got my Boy Child a new messenger type bag for all his school stuff which can expand to hold his weekend stuff, too - an IOU birthday present from last week, you see...

Also, I got myself their adorable polar fleece socks in (Jersey, I think?) Cow Print to keep my poor, chronically-frozen foot/feet warm! They also come in very colourful, large stripes, lumberjack plaid and a pinkish, non-polka dotted pattern. Fun! Sadly, the one thing which remains to be seen is if I can tolerate the position of the (non-chafing, says the label!) seams, which runs around the outline of your foot, instead of across the tops of your toes as knitted thread socks tend to do. I know it's fine on my 'normal' foot, but the CRPS foot was not amused when I tried. I am waiting to see if it just needs to 'calm down' or if it's too much sensation to handle. Perhaps the next size up would take care of it as I think I really DO need Cowsox to make me happy, don't you?! Yes, I thought so.

So, to end my rambly tale, I decided to avoid the nightmarish bus home, nixing also the idea of waiting for any nearby bus route which featured the Really New buses featuring Actual Accessibility and decided to, gasp, scoot home myself! Oh, noes, what is she thinking?!

Well, I was thinking that this here scooter says it can do about 32 kilometres of distance and I'd done no more than a few so far. Also, to maximise its distance potential, it suggests the first several uses and charges happen before venturing far... or something like that.

Feeling sassy (mostly too angry and worried about rush-hour commuters killing me) I decide to try scootig home, as I was saying. I figured if my battery indicator started to drop rapidly I could call a taxi and use the fabulous half-off coupons us gimpie folk can purchase (well, to purchase them is half of what their face value says. So a $10 cab ride actually only cost you $5 to buy the tickets, see?) and get an accessible cab home - they have ramps in the back of the vans now, neato!

So, off I go on my merry, if not slightly frozen way. On the way I get to enjoy many of Victoria's lovely curb-cuts at corners of streets, some lovingly flattened, most around 3 centimetres off the ground (an inch and a half-ish?) which IS rather jarring when rolling over them, I have to say. Still, I plug along, grateful for my scooter's alleged suspension system and it's not-alleged but true pneumatic tires (put air in them just the other day as I found them to be rather soft; turns out they were around 1/3 their intended capacity!).

Despite some general discomfort with some of the jarring aspects of the journey (tends to set the nerves on edge in the best of us, I'm sure) I arrived home having just moved down the second bar on my battery power indicator out of... umm, several more to go. Yay!

I approach my front door (stopped and got a hot chocolate at the Tim Horton's down the road, there's another 'adventure') and realise I've forgotten my keys inside and the door is LOCKED! Luckily Boy Child is still there, having been shooed home on the bus to prepare for his friend's birthday dinner which I insisted he leave me so as not to miss... good thing he was there, finishing his shower and hadn't already left or I would have been rather pathetic indeed!

Ah, well, I'm only slightly frozen still, but that surely is the CRPS frozenness and nothing more as my 'normal' leg seems to have recovered well enough!

Next time: hot chocolate getting and is it really for everyone?! LOL.

Paranoia and not playing their game *** and other 'news'

2009-01-26T22:03:00.000-08:00

I wrote a post the other day but didn't publish it. Why? Because now that workers' comp has been forced to reopen my case I will be next infoming them of my diagnosis (x2), which they don't know has already occurred. See, they won't want me to have this because it means they will owe me more, in the end, and they don't like that.

In my foolish views, I thought they were there to help me get the treatment I need. Really, all they're interested in is saving themselves money and they could care less about whether or not people are suffering without care and treatment because of their money-hungry ways.

So, they treat everyone like they're trying to fake things or fool their system or something, leaving you to try and prove over and over that something really IS wrong with you. In fact, I have doctors who say so... sigh.

Anyway, I have heard of the dirty little games they play to try and find all of those sneaky fakers out there. Well, they can talk to all my doctors all they want, read my reports, see my test results, follow me to the grocery store and see how long I can walk for. But can they see how many pills I had to take to be able to take that grocery trip? Or how long the pain spiked for afterward? Of course not. They're just interested in finding out if you were able to stand for 15 minutes straight, when you guessed you could typically stand around 10.

The whole system leaves me completely and utterly sickened. THEY are the ones who are dishonest and have an entire system built around discrimination against any claim that comes to them by assuming everyone is a big old faker.

I read something a former insurance company employee said, something to the effect of the amount of people who actually try to defraud the company is like a fraction of a percent, yet they treat people like it's a fraction of a percent who are 'real' cases and everyone else is out to scam their system!

Anyway, my point is, I wonder will they find my blog and read me grumbling about them and try to use that against me?! Sheesh.

Well, fuck them! I have nothing to hide because I AM an honest person who has told nothing but the 100% truth; in fact, earlier on I was underreporting my symptoms for two reasons: 1) because I didn't realise some things were actually symptoms (they're so odd!) and 2) I don't want doctors to think I'm just a whiner, complainer or exaggerator. I mean, the pain is so severe, to describe it seems unreal - although it sadly is very real!

Anyway, I shall continue as I have, being strong, holding my head up with pride that I, unlike them, am honest and forthright and I deserve to be fairly compensated and receive proper treatment. I will not give up!

I hope anyone out there can remind me of that when I get so down from those jerks trying to throw hurdles in my way...

Thank you for listening to me ramble once again. This fight isn't over, but I am righteous and justified and I shall not cave!

**********

In other news, I hope to visit a few friends in Vancouver this weekend, but am completely stumped at how to manage it. See, Vancouver is a quick jump/sail on the ferry system for most of us Islanders, many of us do it often. However, I've never done this using a mobility scooter or other aids, and am trying to figure out how I can manage this/if I can.

I have offers of places to stay, one of which will be more accessible building-wise, but farther away and has a transit terminal under construction, leaving the elevator out of service.

And, I don't know how to get my scooter around on their buses, having just been trained to use the buses in my own town, I'm a bit nervous about the process - more so in a city with which I'm not overly familiar!

Oh, for when I have my own vehicle and can bring my scooter in it!

Yes, that's something to look forward to; being able to travel to exotic Vancouver (har har) with my own scooter-carrying van! Oh, the freedom!

My Baby Boy's Birthday

2009-01-19T11:17:00.000-08:00

Today, my son (Boy Child on here) turns 17.

Yep, that's right: SEVENTEEN!

Aiiiieee, how the heck did that happen?! Well, it stands to reason that this followed 16 and, before that, 15... but I'd swear each year successively seems less and less believeable! I mean, how on Earth did I manage to get a 17 year old child?!

Well, ok; if you can do a little math and/or saw my 25 Things post, you'll know I had him at a very young age... young age+17=now. I know that part, obviously. It's what has happened in between that seems to defy explanation; has it really been that long?!

He's not even a child! He's a great, gangly, boy-man, with size 12-13 men's feet (US sizes), is probably 4 inches taller than me (I'm not very short for a woman!) and he can pick me up if he wants, while chuckling in his increasingly bass-ey, deep voice.... aak! And aak again!

Today, he is at school, where he's been subjected to the 'birthday bumps' numerous times already.

Later today, I will, as every year, tell him in great detail, about the day Mom squeezed him out of my vagina (YES, we are a strange family; did you just catch that?!).

Seriously, every year I will tell him about how I went into labour, how his father was a big coward (it wasn't hurting HIM!) and how, eventually, I managed to coax him out of his warm, safe nest and into the cold, cruel world! LOL.

He LOVES it!

OK, well, this year he's groaning about me doing it... but you just wait; when he's all comfy and I can sit by him and he's not running off to school... I'll get him and out comes The Story!

Told you I was a little odd. But in a good way, I like to think!

Happy Birthday, baby boy! I looooooooveeee yoooooooooooouuuuuuuuuuu!!!

Mama

"Followers"?

2009-01-16T23:21:00.000-08:00

Can't decide if I like this new feature which lets you keep track of blogs you follow and others keep track of your blog, if they like. I had just been keeping blogs I came across and enjoyed in my favourites list to open and read in my tabbed browser; maybe this is better? I shy away from things that seem like I'm trying to recruit friends and/or brag about how many I have/don't have.

Hmm. Does this help anyone? Any reviews to share? I'm still so new to these features, I'm certain there are plenty of things I haven't even come across yet.

I WON! I WON! YEEEAAAAAHHHHH!!!

2009-01-15T12:50:00.000-08:00

I won the battle and hope it's actually the war!

Yes, this morning on my way back from my practice/training session for taking my new scooter on the regular public transit buses, I arrived home to see the mail being delivered. Opening my locked mailbox, I was instantly terrified/nauseous/excited to see the WCAT logo peeking out at me - that's the Workers' Compensation Appeals Tribunal, to whom you turn when you are treated unfairly/denied compensation, etc., from our province's workers' compensation.

Shaking and about to vomit, I hurried inside and carefully tore open the large envelope with my still cold from outdoors hands...

I began to read through the charming legal-ese crap, full of legislation numbers/quotes these things love so much, and skimmed over the parts where the restated everything I put into my appeal, since I know that already!

With a sinking feeling, I worried as it mentioned I returned to my 'regular work duties' as I never did, but yep, that was later stated in my submissions, along with the excellent medical-legal letter submitted by Dr. R, my first specialist, a.k.a. Specialist #1. (omg, I'm still so shaky, at least in the head, that I keep making so many typing errors!).

Sooo, let's get to the good parts (paraphrased and/or abbreviated for my privacy);

Reasons and Findings (these are many, but I'm including the best part of the last item)
... I find that the worker's current left lower limb pain is a compensable consequence of her March 2006 injury.

Conclusion
I allow the worker's appeal... the worker's file is returned to the Board; her claim should be reopened for payment of further wage loss and health care benefits, including a determination , if possible, of an appropriate diagnosis and treatment.

YEEEEEEEEEEAAAAAAAAAAAHHHHHHHHHH!

Can you TELL how happy and relieved I am?! I spoke of having this horrible WEIGHT on my shoulders, the proverbial waiting for the other shoe to drop feeling... and it's (almost) completely gone!

Me, looking shocked/happy/relieved and teary-eyed 'cause the darned flash was so close, ha! Oh, and see that colourful paper on the wall in the background? Read on to hear what it is!

OK, so I know there might be a few more sticky points that WCB will try to be jerks with, but this is the major thing, to have the case/file reopened, for them to be responsible for all my medical costs due to my condition and for wage loss benefits...

I called my advisor (the lawyer who works for the gov't helping people like me fight wcb! oh, the irony!) and told her the great news as she hadn't received a copy of the letter yet. But she was able to read it online and was very happy for me, too! I asked how I proceed, what comes next?

She said I could call them and inform the case manager of the decision, give her a list of the doctors I've been seeing (they will need to get all the reports from the last year or two that they have been rejecting them, refusing to add them to my file) so they have all that information to make a new decision/decisions regarding the compensation they will give me. I was told it might be one large decision or several small ones, but I would be looking at a chronic pain 'award' (what a STUPID term! Like I'm getting an Oscar, for frick's sake?!) and possibly partial disability, etc.

I can see room for them to still make things difficult, but just knowing they HAVE to accept my pain is because of my work injury and therefore they're responsible for my health care costs... that is SUCH a comfort. Although this will take up to 2 months to be organised, I will have my prescriptions covered and I can stop trying to decide if I should eat, pay bills or get my prescriptions!!!

This might sound woo-woo, but I'd like to mention the "positive affirmation/manifestation" kind of sign I made myself about a week ago, taping it to the wall beside my monitor here; it reads that WCAT finds Lisa Moon ELIGIBLE for reopening file with WCB, medication costs, chronic pain award, partial disability award, wage loss benefits - and I threw in vocational rehab, too. It's behind me on the wall in the above photo. Interesting, no? I believe I wrote the sign about the same day the decision was made! How very interesting the Universe is...

I must do something to celebrate tonight! Perhaps a very nice dinner out at one of my favourite places... maybe a movie at the theatre, too!

At the very least, I'm going to bundle up and head out on this dry but chilly day (apparently we're not quite done with winter here, yet!).

OH! I almost forgot; today is indeed a happy, monetarily advantageous day... I also received in the mail the new court order for child support for my Boy Child - he'll be 17 on Monday! The support will be doubled, which will make things easier when I go back to work, which will be, hopefully, very soon!

Sheesh, maybe I should go buy a lottery ticket or something?! Seems to be some good planetary alignment or something going on here!

Oh, happy, happy day! :)

Musings, fitting the pieces together, new adventures & new directions for this here blog!

2009-01-14T23:19:00.000-08:00

Oh, my, how the time doth fly and I find it's been days, then a week or more and I've not posted. I think it's because I've been working on some difficult personal stuff around dealing with doctors, etc. (self-advocacy) and when I'm working on something that requires much thought, movement/change and growth, I find it quite mentally and physically taxing.

I've mentioned before (if you've been reading) that I found an excellent counsellor to work with to help me deal with the many challenging feelings around my disability, the pain itself, dealing with doctors and the medical system, and the still too-present anger I have about being injured on the job and having received NO support from my union, employer or the workers' compensation system I'm still in appeals with.... it's a LOT to handle. Exhausting at times. Most of the time!

Speaking of workers' compensation, the WCAT (workers' comp appeals tribunal) decision is due by the end of January! Yes, THIS January! I can't tell you how much the wait is killing me... I am fighting for the re-opening of my case, for starters, since the closed it 5 or 6 months post-injury, despite my telling them there was still pain (they said that was normal, everyone has that, deal). In fact, that's around the time things were really getting worse as I tried to work back up to the normal amount of standing and walking I did prior to the injury.

Yeah, so just re-opening my case is the first thing! Sheeee...esh. Then, they will be responsible for any medications or necessary medical items (oooh, say the several thousands of dollars I've been forced to spend in the last (only!) 1.5 years since I was given any sort of pharmaceutical relief. While they're at it, how about the fact that I had to leave my job as I wasn't even able to do it part-time anymore? Or, wait! How about the fact that I was diagnosed with a chronic, often progressive neurological disorder which makes it incredibly painful to walk, stand or sit for any length of time, has robbed me of the innocence of one who's never suffered from intense chronic pain... sorry, am I ranting again?

Really, what scares the crap out of me right now is the fear that the WCAT (tribunal) won't make things a lot easier by putting all of these things into their decision and I'll have to keep fighting for each piece. I just know from reading so many other stories how horrible workers' comps and other insurers can be and it makes me nauseous just thinking about it.

But I'm determined to carry on as best I can and I WILL, one way or the other! But GEE if it isn't like torture to have this decision hanging over my head... and they're making me wait until the very end to find out their determinations! (they could do it sooner than the 180 days, but sometimes my advisor/gov't lawyer says they wait until the very last day! UGGGHHHH!)

So, back to the counsellor thing. She feels I have been actually traumatised (and I have to agree) by not only the injury itself, but by my poor experiences with doctors who never noticed the glaring signs of CRPS (complex regional pain syndrome) - despite the fact that I was more recently told that the symptoms I recounted to the pain specialist were pretty much a 'textbook' group of symptoms. Knowing that I saw several doctors and physiotherapists in the first days, weeks and months after my injury and no one thought to say "Hmm, that seems a little extreme for what was supposed to be a 'bruise/contusion'. Let's send you for some tests to make sure there's nothing more serious here."

Mind you, I don't think I helped since I didn't make it clear the torturous levels of pain I was in; I thought that was NORMAL for an Achilles injury, so tried to 'suck it up' and bear it like one is 'supposed to'. Unfortunately, as the weeks became months and the pain evolved into something different, but incredibly painful in different ways, my ability to 'grin and bear it' wore right out. Another thing one would hope a physician might pick up on... but none did.

And it's so true: I feel completely disillusioned with the medical care I (didn't) received and that would be putting it mildly. I feel betrayed by the professionals I trusted to take care of me. I feel even violated - my body was physically damaged and those same professionals neglected to properly assess and treat me.

Yes, it's true that, even had a doctor suspected CRPS in the first couple of weeks or months could be starting up that I still might have gone onto the stage where I'm now at. HOWEVER, the key to this nasty disorder is early intervention. By early, most reports and research I've read suggest in the first few months, the earlier the better. Vitamin C taken for 2 months post injury such as mine or a wrist or ankle fracture has shown very promising results in preventing CRPS and also in minimising it where it has occurred (pardon me if I've not entirely presented this research verbatim. If you like, try searching for CRPS and Vitamin C on your favourite search engine). Also, I've read that one simple nerve block procedure can essentially halt the damaging path CRPS can take in the body.

When I saw the pain specialist and he told me this, I had to fight back the urge to scream and cry in frustration: WHY! WHY ME?! WHY DIDN'T THEY TAKE ME MORE SERIOUSLY? WHY DIDN'T THEY HELP ME?! Ohh, g-d, I can't be like this forever!!!! You know, some good, old-fashioned anger and some denial (thanks for this model of understanding, Elisabeth Kubler-Ross). I felt so full of rage that so much of these (by then it was 2 years post-injury) years of suffering, of sheer agony, like torture - the pain, the excruciating pain; the sleepless nights for years are enough to make one mad...

Sooo, yeah, a few things I wanted to work through with someone trained in these matters! It's a pretty heavy load to tell people you feel like you want to kill yourself for the first time in your life because you seriously can NOT take this kind of pain for one more minute, for one more day. And when you look 'pretty normal' or 'healthy' i.e. not 'sick' then it's even more difficult for people to comprehend.

To compare: an acquaintance of mine was hit by a car while she was crossing through an intersection. She had the right of way and was totally not at fault. However, this very healthy young woman suffered multiple fractures to her lower leg, requiring surgery and many pins, nuts and bolts to put her together again. While she healed, she initially had one of those 'halo' things on her leg, bolted into her to hold everything in place.

Now, she is much more extroverted than I, so I do realise that would impact what I say next, but... she received TONS of support, help, friends coming over to prepare food, clean up, help with her child, etc. etc. Her Facebook page was covered in well wishes from so many, sending all their thoughts from afar, but more their assistance from those who were close.

I hate to sound whiny or ungrateful... but I REALLY would have been SO incredibly grateful for a homemade casserole or an offer to come help with a few loads of laundry... or whatever. Anything. Thankfully I had my son (who I have to say is not the, ahem, naturally tidy type) to do a few things and my best friend who often made sure we both (son and I) ate.

But what I'm getting at here is... what happened to all the other people I know/knew? I didn't get so much as a phone call, save for one the day after I was injured (from a co-worker asking what had happened).

I guess this sounds whiny and lame after all. I mean, it has been nearly 3 years since this all happened... but the thing is, I really found out who my friend is (yeah, singular) then. I've made new ones (tentatively) since the injury, but those new friends-in-progress only get the Lisa that is since CRPS came along and wove it's nasty web of mixed-up nerve fibres in the brain, messing up pain with emotion and throwing in some memory loss and difficulty with word retrieval, to boot. I feel like a "Less-than Lisa" now; less intelligent, less fun, less happy... and obviously far less mobile and independent, than I once was. It seems like a tall order to be my friend now and I often feel so sad and afraid that no one would really want to be my friend if they knew me in 'real life', not just how I seem online.

It's not that I'm not who I come across as here, but I think it's harder to see the anger, pain and frustration in person that it is to occasionally read a bit about it? Hard to say.

I guess I'm saying one of my feelings is really GRIEF. I've lost things in my life that I don't know if I will ever get back: the ecstacy of living without 24/7 pain, being able to walk to my heart's content, all over my beautiful city... it is grief, it is loss, it is pain and I am healing as best I can.

I AM making great strides, I have good tools already at my disposal to manage difficult times, but when life throws something like this, it's suddenly time to upgrade your tool box to handle the onslaught!

While I work on that toolkit, I haven't forgotten my intention for my blog to be about more than Lisa's Injury. I had thought to write about the different parts of my live, the Phases I speak of in the blog title, the Evolution in which I am actively engaged.

This means leaving (well, branching out from) the safer topics of pain and new disability and hoping the few lovely readers who have found me won't be put off by my other topic choices and/or aspects of me personally. I never thought that might matter at all to me, as I didn't really expect anyone to find and read me when I began. But then people found me and I found them and it has been wonderful, and as mentioned, often my saving grace when I'm feeling I might just be going crazy...

So, hang on, dear readers! I'm not quite sure where I'm going, but I do intend to move as much as possible, to not dwell in the pain and sadness which I've been learning to cope with and move through as best as one can.

I hope you will find my ramblings interesting enough to comment on as I do so cherish every single comment I receive, from a basic 'Hi!' to epic responses to my sometimes rather-epic posts. :) It helps to make me feel not so alone on my journey and that is a powerful and amazing thing.

I've Been Tagged! My 25 Things

2009-01-04T23:22:00.000-08:00

Pre-amble: I went to post this the other day, but held onto it because I couldn't figure out how to 'tag' the rest of my 25 on Facebook {blushes}. Turns out that it was showing up in other people's blogger updates, so I'm busted... here it is. :) I'll just have to figure out the rest of the 25 on Facebook to complete my challenge, lol!

So, my super-cool friend, Kimli, who lives in Vancouver, rides a scooter, has several kitties and one awesome hubby and is far more hip than I could ever hope to be has tagged me with the following fun and interesting charge (like my giant run-on sentence?!):

Rules: Once you’ve been tagged, you are supposed to write a note with 25 random things, facts, habits, or goals about you. At the end, choose 25 people to be tagged.

Ooookaaay, here it goes! My first time, so I'm a little nervous. Here's things you may or may not have wanted to know about yours truly!

1) Yes, this is my natural haircolour (silvery-grey).

2) I began going grey when I was 11 years old (yes ELEVEN) and this is separate from #1, right?!

3) I was diagnosed in February 2008 with a chronic, incurable and progressive neurological disorder called Complex Regional Pain Syndrome, which I developed after a workplace accident in March 2006. It sucks, CRAPS, as I call it! Boo!

4) I was married at age 18. No, this wasn't a particularly great idea.

5) I became pregnant shortly before my 18th birthday (see #4; seemed like an ok idea to 'try' our best to do the married thing).

6) I was separated from #4 in 1995.

7) We didn't officially divorce until 1999 - not for hope of reconciliation, but lack of money for the fees associated with divorcing (which will cost you more than to get married).

8) I realised in my late 20s that I might be sorta kinda also attracted to women, not just men. Not all women, any more than just all men! This is a source of anxiety, since my closest and most meaningful (non-romantic) relationships have always been my most treasured, women friends and I fear that any friends who know I potentially am attracted to women will make them distrust me or treat me differently than before...

9) I kissed a girl, and I liked it (but unlike that song, *I* didn't have a boyfriend, thankyouverymuch).

10) I come to realise (over some time, mind you) I am what I can best describ as 'queer' (in the modern reclamation of the term), but neither bisexual nor lesbian seem to fit for me. To each her own and labels are sticky for me.

11) I never graduated high school, despite being eligible for the 'challenge program' for gifted students in elementary school and having two college diplomas in different areas. I still feel really embarrassed about this, yet still haven't done anything about it. Keep thinking I might... should.

12) I don't have very hairy underarms and I don't remove the hair there, either. Deal.

13) I have a bit of an obsession with cleaning my ears with Q-tips, and they must be REAL Q-tips because no other brand seems to equal their cottony softness.

14) I'm a vegetarian, working on becoming a vegan and, more specifically, a raw vegan.

15) I dream of being the perfect, loving mom who never yells, always says and does the right thing, makes 3 meals per day and has the perfect 1950s housewife thing going on. Without the husband and meat-eating parts. This makes me feel like crap, though.

16) Despite my mobility-impairing disorder (CRPS), I still desperately wish to travel to many places in the world as I've never been able to. And I will, dammit!

17) I'm afraid I haven't taught my son enough to take care of himself when he goes out into the world on his own and it's all my fault. Momworry is the worst.

18) I'm really afraid that by discussing my sexual orientation on my blog that I will offend new blog-reading friends who may not agree with 'other' orientations. But I gotta say it anyway, don't want to hide. And I don't mind answering questions!

19) I really, really hate watching scary movies and shows. I can't stand the feeling of waiting in suspense for something horrible/gruesome to happen or to see said gruesomeness.

20) I have very few friends (near by) in my life but many aquaintances and wish to develop another really close one friendship so that I don't have to just rely on my one, true, dear friend.

21) I almost never drink anything carbonated, partly because I think soda pop is kinda gross (not to mention bad for you) but also it gives me gas, even if I burp up the bubbles! {blushes}

22) I am really verbal about my menstrual cycle and other female goings-on. So much so that my son and (male) best friend can tell you all about it, despite the fact that I'm sure they wish they didn't know! I figure if gals have to go through it, guys should get to hear about it!

23) I love real, stove-top cooked popcorn with vegan margarine and a little salt. I HATE microwave popcorn and think it's an abomination. That might be two things, but whatever.

24) Sometimes I get scared at night or just feel sad and crawl into bed with my son to snuggle. He'll be 17 in 2 weeks... and grumbles in his sleep when I get him to move over for mom. :P

25) Despite being a proud feminist, queer, modern woman who tends toward the au naturel, hippie-ish, furry-legged and armpitted kind of gal at times, I really keep thinking how much I'd love to have a breast lift to correct my sagging, post-yo-yo weightlosses/gains and breastfeeding (they were MASSIVE!) breasts. I don't need them to be perfect, just to not require special scaffolding bras to hold those suckers up would be nice! Also, they are not very comfortable.

And, um, so there you go! Now you know more than you wanted to know about me, I'm sure.

And I'm supposed to tag 25 other people to answer this, whoot! Not sure I know 25 bloggers to hit up (well, ones that won't potentially hate me for doing so), so the rest will be hearing from me over on Facebook. Ha ha on them!

To start with, I hereby tag the following bloggers (and will get the rest, as threatened... I mean mentioned, on Facebook! Haha!):

Alessea
Tough Cookie
One Sick Mother
Elizabeth
Abi
Yanub
Donimo
Kirsten
Alison

*Note: I will not be offended should you choose to decline this 'challenge'; mostly, since this is my first 'tagging' I was just curious to see what people would write, because I am snoopy that way, perhaps. :)

Upated: Let's Boycott This Mall! Rant & Early New Years Wishes :)

2008-12-30T14:35:00.000-08:00

I have been neglectful of my blog, but I'm not feeling too well so I shall attempt to keep this short and lucid.

I have written about our rather unusual stretch of deep-freeze winter here in usually rainy-winters Victoria. It's bad enough trying to get around on icy sidewalks, but I had occasion to go to one of our local shopping malls recently to do a quick errand.

Bestie Ian kindly drove me there and, since I possess a disabled person's placard for parking, he looked for one of the many spaces close to the mall entrances designated thusly, ensuring my journey over the ice and slush to be as minimal as possible.

Certainly, as this was around Christmas and the whole boxing week/month insanity, we were prepared for some potential lot-circling for a free space to come up.

But where WERE those disabled spaces?! No, they weren't just full of cars, they were PILED OVER with all the filthy snow from the lot being plowed!

Apparently Tillicum Mall's owners, Riocan Real Estate Investment Trust (according to my Google search, a large company operated out of Toronto, Ontario, read: across the country from us), cares not where their snowplows dump their loads and, for some unknown reason, the back reaches of the parking lot were relatively snow-pile free... while some of the disabled spots featured snow piles well over my height (so I'm guessing they were at least 6 feet high). The one in the forefront of this shot is 'small' but it still manages to prevent most regular sized cars from parking in it. Some of the well-known disabled blue signs weren't even visible, their stalls and signs were so covered with the disgusting, filthy piles of parking lot snow and ice (look behind the truck in the middle)!!!

Note larger piles on other spots behind these ones!

BOOOOO Riocan, you selfish JERKS!!! What shit company of morons did you hire to do that incompetent job?! What, you think disabled people don't want to come to your mall? Well, be advised I intend to do more than write this complaint on my little blog! Many of us can take our unwelcomed business elsewhere, thankyouverymuch!

Oh, and since Ian was looking for something that Tillicum didn't have, we went to another local shopping mall, Hillside Centre. Guess what? A full complement of disabled-designated stalls as well as their spots designated for seniors, completely free of ice, snow and slush! In fact, their lot was barely wet - not even icy when I walked on it!

I mean, REALLY, people! These are 2 of the 4 major indoor-shopping malls, all located within a 10-15 minute drive of one another. If Tillicum's owners cannot be bothered to ensure their lots are properly taken care of, then I shall be MORE than happy to take my business elsewhere, and adivise my friends to do the same!

I mean, HI! Tillicum has public transit buses which come in to an access point within the mall's lot! One might THINK they would manage to do a better job with their snow/ice management!

It's not like I'm a regular mall-goer, but my son works at the Old Navy store there (which, I note, is external to the mall istelf and featured a much better lot, with the disabled stall I used somewhat snowy/slushy, but still accessible for me (less fun for a wheelchair, I must say). I'm guessing all mall stores pay into the owners' clearing services as part of the rent/lease, so why the massive piles on the other disabled stalls?! I really like Old Navy as it's the only place I've EVER found pants which actually fit me properly with their variety of waist 'rises'. Also, I visit the Cotton Ginny store inside for their organic cotton shirts - but I can go their other stores at Hillside or Mayfair malls!

And finally, I use the London Drugs pharmacy at Tillicum, as it was close to my old home and I had hoped to build a relationship with a pharmacist or two since I take a lot of meds these days! They can be great sources of info, I've heard, so thought it wise to visit the same store...

After this fiasco I'll be looking for another close pharmacy to fill my prescriptions (I know of one closer, but those jerks charge more for their dispensing fee! Boo, extra fees!)

Since there is only one Old Navy store on the island, I will have to continue to shop there when I'm lucky enough to have the money to buy something new... but that's IT! Old Navy, nothing else! LOL.

So, I guess you're all wondering by now if I have a fever or took too many pills today... maybe the former, but I'm plenty mad about this!

I suspect the mall owning company would have heard plenty complaints on this, but they don't really make themselves accessible; not like there's an office within the mall itself to complain to... but they do exist and they must realise how completely unacceptable this is!

NOW, it's December 30th here, for my lovely readers in places like New Zealand and England, you shall be celebrating the new year before us here, so I wish you the very happiest of New Years! May 2009 bring us all wonderful growth, love and happiness; for my fellow chronic pain sufferers, may it be a year where research makes great strides that we might live our lives more fully and without such struggle and suffering.

Much love and light to all!

An Amazing Holiday Season

2008-12-26T19:26:00.000-08:00

I hope everyone has had a wonderful winter, whether you celebrate Christmas, Hanukkah, Kwanzaa, Solstice or another holiday - or perhaps you don't celebrate any holidays; regardless, I wish you and your loved ones an upcoming year of peace, joy, love and happiness.

While the weather here in Victoria has been quite unusual and extreme with heavy snowfalls, rare temperatures well below freezing with icy, cruel winds... and worse, the ice that forms as the snow begins to melt, but refreezes in the nighttimes.

Our city is woefully unprepared for the snow and consequently, our streets have been minimally plowed and if they were, the next snowfall would undo all the work... of course, when they DO plow, where does the snow go?! That's right, all over the sidewalks, which tend to be trampled down into sheets of ice. NOT friendly to anyone, but especially treacherous to persons with any kind of mobility impairment!

For me, it meant being stuck at home as the buses, while running mostly, were not accessible due to the amount of ice at the stops, etc. My bestie Ian was kind enough to borrow a car (he's still not decided on purchasing a new car) from his mom to take me on a huge grocery shop so I'd be stocked over the holidays and not running out should the weather trap us all in!

I have to say that I have been particularly blessed this last week with a ton of wonderful gifts coming into my life. First, I received my scooter and walker - ones of my very own!!! - on Tuesday, as promised. The walker is great, a real help around the house and the scooter wound up being fancier than what I thought I'd be getting!

Seems that the model ordered was actually superceeded by an upgraded version, with great shocks/suspension, an even comfier seat (SO important) and even the colour is nicer than the demo model I had tried! Wow!

It's a bit of a tease right now, since I can't go out for a spin with all this snow on the ground and it's not really something meant for indoors, unless you're lucky enough to have a rather large home, perhaps, not a modest but comfortable apartment like me.

Really, the scooter is gorgeous and soooo comfy! I almost cried with happiness at the prospect of being able to have some independence, to be able to DO things, even simple things like grocery shopping, without trying to coordinate both a ride and a time when my pain levels allow me to do so...

Just to share, if you're interested, here's a link showing my amazing new freedom-mobile!

http://www.eclipsemedical.com/SHOPRIDER/mobility-scooters/shoprider-778S.html

Since the model I received was nicer than expected, I also was pleased that the not that great - a burgundy colour has been replaced with a gorgeous, deep metallic cranberry sort of red and that the faux wicker basket on the front was the black metal model shown on other scooters they carry. (Normally, I'd go for silver no question, but this colour is just soooo pretty, it's like the cherry on the sundae, so to speak!)

If receiving these wonderful mobility aids wasn't enough, I was also blessed to receive several other helpful and amazing gifts;

~ an iRobot Roomba - a little vacuuming machine that cleans for you! Ohmygosh, how amazing is that?!

~ a set of cordless phones so I can have an extension in each room so I never need to hurry for the phone and I'm always close to one should I need help

~ a whole bunch of soft, comfy clothes to keep me warm - with an employee discount from my son's job at Old Navy! Whoohoo!

~ "Smile Cards" - gift cards for a popular local grocery store, so I have some food the next time I pay for my prescription instead of getting groceries as, the gift-giver stated, no one should have to choose...

~ last but surely NOT least: what I'm typing on right this very minute - an Acer Aspire one, which is a tiny, cute but totally functional laptop in miniature form! Now I can elevate my leg when I need to and still do research, check email and even write and read others's blogs!

http://www.acer.com/aspireone/ (mine is the blue circle!)

I'm just blown away by the generosity of these gifts, as they mean so much to me in terms of my independence and comfort. OK, so my disability benefits paid for the scooter and walker, but it feels like a gift!

Anyway, I don't mean to brag at all and don't usually talk about 'what I got' as I completely believe the focus of holidays like this to be about giving and being with loved ones. And frankly, neither I nor most of my friends and very limited family just simply don't have the resources to spend on such luxurious gifts. To be blessed like this is... foreign to me, really, and I can hardly believe that this is all really here, for me...

Only a week and a half from now I'll be attending my apointment at the Pain Clinic to determine how the feel they can help treat me. FINALLY, after so, so long, it seems things are actually falling into place, slowly at times, but surely.

I can only hope and pray for the positive decision from the workers' comp tribunal to cover my prescription costs and reimburse me for all the past ones as well as compensation for lost wages and partial disability... and this is the 'biggie' hanging over my head, obviously, the one that involves salvaging my finances which are completely overdrawn and in debt and I'm hanging by a thread, so to speak. I just keep BELIEVING that by in the next month I will receive notice of their fair and just decision to make workers' comp reopen my file (!) and begin to send me the benefits I know I rightly deserve.

It is hard waiting for that, knowing SO much rides on their decision due by the end of January. I try not to let it worry me, but HELLO! like I can just NOT worry about those thousands of dollars.... ugh.

But I'm determined to keep a positive mind and focus on my gratitude for these wonderfully helpful things in my life, and the wonderfully generous loved ones who have so kindly gifted me thusly. :)

There is a new year about to begin, one I feel filled with hope and excitement about. I hope everyone who reads my ramblings here will take away a bit of that hope for themselves and I wish for nothing but healing and love to all.

Thank you for reading!

Love & Light,

Lisa Moon

Anticipation: freedom, mobility, friends, feline! Also, Light!

2008-12-20T23:25:00.000-08:00

There are several things I find myself awaiting these days.

Well, first, I've had quite enough of this arctic blast we've been under for the last week or so. The temperatures are very unusual for Victoria - like minus 20 celsius with the windchill!!! - and this snowfall which keeps occurring, while pretty at first, is NOT a disabled person's friend!

Not only is is obviously slippery and dangerous, but when they plow the roads, where does all the snow and salt and sand go? That's right! Onto the sidewalks! They're often impassible. I saw a woman walking down Quadra Street, near McKenzie avenue - on the road. Now, while I quite understand her wish to walk on the clear, dry road, where the sidewalk was obviously covered in ice, Quadra St. is a VERY busy, major thoroughfare and frankly, in this weather, people on the sidewalks are taking their chances! You never know when a runaway car will careen over the curb...

Anyway, back to what I was saying. Yep, the snow looks pretty when it's fresh and you needn't venture outdoors, but it's the holiday season, I missed a lovely couple I know's open house today because of the weather. Instead, I spend far too long and far too much purchasing a hefty amount of groceries for Boy Child and myself to last for the next couple or few weeks.

Which means I bought food, not medications. Yikes; that's gonna hurt when those come time to be refilled. Ugh.

Well, brighter things are happening, too! I called my medical supplier, Motion Specialties, and asked if the scooter I ordered would be in as soon as they hoped or if it needed to be ordered in with the specifics I require. I've an appointment, in my home, to have the products delivered, set up and adjusted to my satisfaction, on Tuesday morning! Let's just hope this blasted weather doesn't slow things down! Now THAT'S a holiday gift I'm thrilled to get!

Oh, yeah, and my walker will be coming with that order, too. I can use it around the house, especially in the kitchen and doing laundry, so it will be a very welcome addition!

Now, if that weather would just smarten up, I'll be able to get out on my own! Freedom! Independence! I'm so excited I could just about burst.

I'm also happily anticipating the visit of my lovely friend, her newborn and hubby tomorrow, where they will be dropping of their kitty for me to kitty-sit while they visit with their family for the week. It will be nice to have the company since I'm at home so often!

My hope with the new place was to get all unpacked and set up to have my own 'open house' to have friends drop by to see the new place and have a nice visit. I'd hoped to do that between Solstice (which is Sunday the 21st) and Christmas, but I'm not sure I'll be ready then. My goal has altered with my ability (and availability of friends to help with heavy things) and now I hope to host people before the year is done - which is sneaking up awfully quicky, I've noticed!

I guess I might explain a bit (in very shortened form): years ago, I began to feel increasingly unhappy about the Christmas season, excited yet sad, too. See, I rather enjoyed all the carols which reminded me of my childhood (in happier times), and the ideas of seeing friends and family, but I felt a growing dismay with the rampant consumerism and the seeming total loss of any spiritual aspect of the season for many. I don't really have any family, so the time could also be lonely. Also, not being a Christian, it felt odd to me to have that as the assumed 'norm'. I wanted to learn about Hanukkah, Kwanzaa.. what do people celebrate in other parts of the world?!

I enjoyed reading a bit about many faiths and was especially intruiged by the ideas behind the path called Wicca, a sort of recreation of pre-Christian religion practiced by people in northeastern Europe (I realise this is a quickie, lacking explanation; sorry). The religion struck me as quite beautiful, very peaceful and earth-based, respect for the seasons, male and female aspects of deity... it felt lovely to me. I loved the thought of the Winter Solstice being a celebration of the return of the light! What a powerful way to think of it!

In my life, this is true in many ways. Tomorrow, Sunday the 21st of December, my son and I - along with a few friends who may drop by - will gather to share food and a few gifts and to celebrate the return of the Light into our lives. I've fought the dark sadness that has tried to creep in with disability and fought for my right to be happy, to have hope. To have Light!

I wish for anyone who might come upon my humble writings here a sincere and loving wish for the return of Light into their lives, in all the best ways.

May your souls be filled with light and love.

Happy Holidays!

Lisa Moon

The pain from noises

2008-12-12T14:12:00.000-08:00

One thing about CRPS that is weird and took some time for me to realise what was happening; noise can actually cause the CRPSer pain!

Yes, the loud sounds from music, a theatre movie, a screeching siren or any number of other things...

Like, for example, the workers doing the 'remediation' construction on the exterior of my new building (in Victoria, and BC in general, it's quite moist, so there are problems with moulding on and in buildings due to insufficient construction preventative techniques).

What this means is ugly scaffolding on the exterior of buildings for months while the rip off the outside and rebuild things more water-proof.

Today, I got pounded out of bed by someone banging on some trim or ?? on the exterior of my bedroom window. Ugh. So out to the living room I came. They followed. Then the dining room and so on, around all the windows.

This is even louder than someone banging nails into the walls inside to hang a picture, which I could handle a bit of. This incredibly loud pounding is making the windows and their blinds inside shake!

My head is now pounding to match, even when the hammering has stopped. It hurts right into my bones and my nerves feel stretched to their limit.

Also, this happened the other night when my friend took me out for dinner. A large party table sat next to us and, before the booze was even flowing (a girl's birthday, apparently) their were loud shrieks of laughter from this one especially obnoxiously LOUD girl! Gah! We bolted as my friend was incredibly annoyed and he could only imagine it being worse for me. Sigh.

I'd almost compare it to fingernails-on-a-chalkboard in how some people cringe at the mention of that, but it is so, so, SO much worse.

I know, I should try earplugs, but I cannot stand the sound or sensation of them in my ears. I've just phoned a friend to borrow his full-sized stereo headphones, hoping they might dull the noise from the banging - I don't even plan to listen to music, just wear the cushy headphones!

Also, my computer keeps crashing and it's really irritating! It's one thing for "Internet Exploder" as my friend calls it, to crash, but sometimes the whole thing just goes pooft! for no reason. Usually when I'm trying to catch up on friends' blogs. So frustrating!

Calming mantras, calming mantras: You're getting a scooter! You're getting a walker! Soon, you'll be able to just LEAVE your home if you want or need to!

Latest news and goings on

2008-12-11T11:45:00.000-08:00

Well, I feel a little sheepish when I haven't posted very often, but I've been catching up on rest when I can, hosted my friend and her sister (also a friend) and their two, yep two, newborns (one a month older than the other) yesterday for a nice visit and had several run-ins with unwanted water in the last few days!

Let's see, first a few nights ago, my son suddenly noticed water coming from under the bathroom sink. Upon investigation, it seemed to be emerging from the drain area, which didn't seem to have anything to do with the very minor dribble occuring at the tap (that looked more like a washer needing to be replaced).

Sadly, with this leak went about $10 worth of paper products, one of the few things stored underneath said sink. In our complex, there is a non-resident caretaker to whom we direct such issues. Upon calling him, he promised to be there first thing the next day as he was off to another, far-off part of town for another urgency and didn't think he could make it back by the end of that day. No problem, we will brush our teeth in the kitchen sink, says I!

Sure enough, he came early the next morning, unhooked the sink, expecting to find as did I a loose connection or some such. Instead, he found a shockingly rust-corroded under-sink area where it connects to the pipe so that no matter how tightly one ensured things were attached, the hole was now larger than the pipe! You couldn't see this from the top/inside of the sink, so we were both taken aback. He was quite apologetic that he didn't find this when he was in fixing up the place before I moved in, even when he used the sink!

Anyway, turns out I'd need a whole new bathroom sink and while he was at it, he'd see if he could get a new faucet set as the old one was quite worn and unattractive. He expected to return that afternoon. He arrived back less than an hour later with a brand-new sink and faucet set and went about installing it while I visited with my lovely friends and thier gorgeous, newborn sons.

Now, I have this gleaming new sink which gives the bathroom the look of a facelift - so much brighter, makes the older countertop even look much nicer! Yay!

No sooner did my friends with their babes leave, which was not long after the caretaker left, I got another knock on my door. This one was expected; it was the installer from the supplier which I'd ordered my safety and other supplies from, here to install the 2 grab bars in my bathroom and the toilet seat bar frame. Whew, more action in that bathroom, haha!

In less than an hour, he'd located studs, made difficult-sounding holes through the tiled surround and mounted and caulked the 2 grab bars, then slipped on the frame around the toilet seat and was done! Whew!

I tried out the toilet seat frame and quickly found that the bar which runs along the front, although painted with enamel, is icy cold on the back of my legs! Aaiiiee! Luckily, I have some pipe insulation from making my home more energy efficienct, so quickly MacGyver*ed a little protective padding, perfectly angled to fit the frame! (There was already padding on each 'armrest' shaped handle, so this was almost a perfect match.)

*MacGyver was something an ex called me, due to my resourcefullness, just like the character in that eponymous TV show from the 80s! Haha!

There was another thing which happened in amongst the installation and visiting times which I didn't get in there, but it's hardly something to gloss over!

I received a phone call from my Personal Supports Worker, from the Personal Supports Program, the pilot project the government of BC is running to assist people on disability benefits in acquiring the mobility, safety and other medical items which they require, as well as to connect people with other services and resources in their community.

My worker, we'll call her PSW here, said happily after asking about my move, "Did you get your letter?!" Um, no, I replied; what letter? She said she'd heard from HAB, the Health Assistance Branch of the Ministry, and that my scooter (and walker) request have been approved!!!

Yippeee! I had been internally steeling myself for a big fight over this request, despite the Rx from my doctor and excellent, detailed report from the Occuapational Therapist I received home visits from. What a relief!

I was able to talk to the rep at the supplier, tell him it had been approved and supply him with the confirmation number so he could send off the order that very moment. I should have everything in the next week or so; fingers crossed the impending holidays don't slow anything down. Even if it did, just knowing it's just a couple of weeks makes it all so much more bearable!

I can hardly believe it! Soon I shall be able to venture out in my new neighbourhood (well, it's only 1.8 km by road from my 'old' place, but still. I am now a resident of Victoria proper, not the municipality of Saanich. Hey, I live here and I'm confused about that one!)

We have a gorgeous, 'green' built, new community centre which has been doing wonderful things in building a stronger community, the Burnside Gorge Community Centre, which is less than two blocks from my lovely new place. It is situated on an access point to our beautiful and incredibly popular regional trail/s called the Galloping Goose and Lochside Regional Trails, which are used by pedestrians, cyclists and families with strollers, rollerbladers and serves as both recreation and transportation, used heavily by commuters to and from work (most of the trail is paved and follows a former railroad track, so there is little grade and it is wide enough for non-automobile traffic in both directions. Just perfect for someone on a scooter who wishes to get out and enjoy the good weather, or head out to shopping without using a car or bus. :)

Just around another corner of my block lies the Single Parent Resource Centre, another excellent community resource. (Can you tell in my work/volunteer work I enjoy helping provide resources to members of my community?!)

Also, there are no less than 3 city bus routes on my block, with many more around 2 blocks away. If I had to walk, I could not access those farther routes nor the large shopping mall also 2 blocks away (plus the half a block or so across the parking lot, haha!). Soon, I shall be able to scoot down there to shop, take the bus, meet up with a friend and/or see my doctor, all without taxis, friends with cars who can give me rides and so on! Aaah, the independence; I can almost taste it!

Oh, and I said a few run-ins with water, right? Yes, well, I also have this little countertop dishwasher, a real boon for PWDs who do not have a full-sized model or the space for the portable, full-size variety. I actually purchased it before my disabling injury occured, due to my general dislike of washing dishes and my son's similar stance; it just took time to train him to load the thing...

Anyway, it's quite simple to hook up right to the kitchen faucet with its adaptor via 2 hoses which supply ingoing and outcoming water to the machine. I did this when I purchased it and it was simple and worked just fine.

Apparently this time I did 'less fine' with attaching the hoses securely to the back of the machine as, although I watched to ensure the start of the cycle went well and the hose didn't pop off the sink faucet, I didn't come to check the draining process. Guess which hose wasn't attached too well?! Yep, came back to my kitchen counter and floor covered with hot-ish water, soaking the boxes still waiting to be unpacked. Argh! Luckily there was no issue other than my human error so the machine is fine.

And yes, there's one more water story today. So, the housing provider always has washer and dryer hook-ups in each unit, should you own your own machines, but do not provide them. Their are also laundry rooms on site, available at a reasonable cost for tenants' use. Some time ago I was lucky to aquire a free dryer in great working order through something called FreeCycle (give away for free, ask for free, online) which was a pretty easy thing to utilize, at least early on when it was first available in my city. I later purchased a matching, used washer and have that set still. I've had no trouble with either machine and had my friend's hubby help my son and bestest friend, Ian, move the machines down the stairs in my old place (WHY a laundry on the 2nd floor is beyond me!!) with the goal of no one becoming over-burdened and hurt in the process. The boys seemed to take care of things just fine and later, Ian hooked up the machines, which I have to say I did not do myself, but the store where I purchased it sent the delivery team to install the thing...

Anyway, it seemed fairly obvious, as long as we got the hot and cold hoses right; we did and tested a rinse cycle to make sure there were no leaks. Everything looked good and dry so we cheered, thinking we could finally do some laundry! But the next morning, I went into the laundry room as I puttered away a few things in anticipation of my friends with babies' arrival. I suddenly noticed my slippers felt... sticky and found myself in a puddle of water.

Cursing, I began to mop furiously, rescuing some gift wrap (which of course, was one ended on the floor) and a few other things out of the escapee water. Unable to investigate much myself, I emailed Ian of the situation, asking if he might stop by after work to see what went wrong.

When the caretaker was done with my sink, I asked if he might have a quick peek, although it's not really their responsibility to do so as the machines do not belong to the unit, but to me. He happily looked for me and said everything seemed secure, as we had thought, and all hoses and connecters were snug and dry, too. He suggested giving it a try and if I found more water, to give him a call and he'd stop by when he could to have another look.

WOW, what a kind man! I was - and am - so grateful!

Today I get to try my washer and see if it leaks or not. Let's hope for NOT!

But for now, I'm off to try out my newly safe shower! Fingers crossed I've no more trouble with unwater water appearing!

Gosh, I'm tired just from typing it; sounds like a month's worth of adventures in just a couple of days!

Oh, by the way, unless you think my life has suddenly turned into nothing but sunshine and roses, my seemingly unending quest to get some coverage for my expensive prescription, Lyrica, covered, was once again denied, this time by the PWD office who attempted to get coverage on my behalf. Their policy is to not offer any monies to non-covered medications, too, so there's no help there. Still, I shall try to appeal this... as I still await the results of the WCAT (Wokers' Comp Appeals Tribunal) appeal into my worker's comp case denial. Fortunately, we are nearing the end of the time they have to make a decision, and I will have one from them by the end of January.... but I've been waiting since the end of July, so it's been a while!

Oh, again! I also was asked if I would be willing to be interviewed by someone from the assessors of the PSW project, as they are charged with determining the future of the program, based on it's early successes - or not. I was interviewed in my home and will likely be called again in 6 months, which I was and am happy to do as finally there has been something helpful put in place by the government!

Here I am... well, barely, but hanging in!

2008-12-08T19:11:00.000-08:00

Hello! I've missed writing on my little spot on the Internet. This has been a very, VERY busy and challenging - not to mention painful - week for me.

Last Monday we officially moved into our wonderful new home, a one-level suite with lots of south-facing windows, wide hallways (I can use my walker with ease!!!) and excellent public transit access! Yippee!

On Monday, things seemed pretty darn smooth; we got almost all the large things done in the rental van that day and finished it up on Friday with my friend's dad's pick-up truck (following here?). There were gaps in between as I was relying on my bestest friend, Ian, and teenage son, whom I have named Boy Child for Internetting purposes, to do the vast majority of... well, everything! I was able to do some packing and cleaning, but the lifting of boxes and furniture was up to my favourite men-folk.

This sounds nice, having help and not doing much when moving, but it was incredibly hard for me as a) I'm used to doing much of moving myself b) I felt like a jerk telling people where to put things, etc., but feeling like I hadn't lifted a finger c) I knew our time constraints were working against us and I felt a great deal of pressure to get everything done. Not just the moving of stuff, but the horrible amount of cleaning after. I'm talking 5 years in one place cleaning and for the last 2.75 years, I've been physically restricted from doing any sort of 'heavy' cleaning and, at times, even the simpler things. Plus, moving always stirs up all sorts of 'dust bunnies' even in the tidiest home. In fact, a dear friend of mine who had just returned from a vacation in Australia even managed the time to come over and scrub my bathroom til it gleamed!!! For which I was obviously very grateful. :)

But things like cleaning the stove? Whatever. I'm a vegetarian and rarely use the stove. My son eats chicken and fish, but the oven is not used a lot. Conseqently, and because I am lazy, perhaps, I don't clean my oven until I move! Well, my oven actually wasn't that bad, but still needs to be cleaned WELL. Which I'm proud to say I did almost entirely myself - just had help pulling it out from the wall to mop behind and scrub the sides. Done! Actually, I got a good feeling of satisfaction seeing how clean I got everything!

We solidered on, despite some vocal protests from 16 year old Boy Child (grumpy from little sleep) as I was determined to recover as much of my damage/security deposit as possible.

In the end, even though the inspectors came back 3 hours after our scheduled time to allow me to finish, they were quite pleased. And, even though I accidentally totally forgot to clean a large, 'lazy-susan'-filled corner cupboard (how on earth did I manage that!?!) and the tiny, narrow one beside the fridge... oh, and the narrow blinds beside the front door... they said it was very light and little cleaning and that they wouldn't charge me for it. SO, I get my entire depost back! Yippee! THAT will be much appreciated as the holiday season is right around the corner!

As for the pain, uh, yeah. It's sure there, all right! I've even strained the muscles up my entire right arm from my thumb all the way up to my shoulder, even the top of my breast aches! Ouchies! Too much scrubbing!

Thrilled to be done so I don't have to worry about it anymore. Yeah, now I'm waist-deep in boxes all over my new place, which had looked so tidy (after a while, mover-guys gave up on putting boxes in correct rooms and just started stacking them in the closest rooms - the living and dining rooms. This makes a lot of sense, especially since it's quite cold outside and has been raining on and off... However, I now have to make some pathways so I might start sorting those boxes...)

This is a nice part, though, as I think I will enjoy taking my time deciding where things will go and so on. There will be some more culling of extraneous possessions as I really feel the need to simplify, to streamline, to de-junk even more.

Yep, I am already liking living here. I love my new home and I'm so happy and grateful to be here. I can't wait to organize some so I might invite a few people over - again, just in time for the holiday season!

Now to sleep and sleep long, deeply and well. Rest and recover time.

I made it!

2008-12-02T13:02:00.000-08:00

Perhaps just barely, but I am here, lol. Stayed the night in my new place last night and I couldn't be more excited - or exhausted!

It was a very VERY long day and I've had very little sleep; when I went to nap this morning, of course the cable guy arrived (as per the scheduled window of time) to set up my digital phone and Internet. As you can see, it works just fine. :)

As many others can appreciate, it's been a challenge especially as this is my first move since having this disability, so (following the kind, helpful advice of others!) I've been as careful as I could to pace myself, planning ahead, strategically timing medications for effectiveness vs. increased sleepiness and of course, being able to still drive (I can't do much actual moving, but I drive the van, darn it! And I does it well, too. {wink} ).

Even still, moving day Monday dawned with a higher than I'd hoped level of pain due to my preparations the day before. Drat. But as I've had to do many times, I just forced my way through the day, knowing I just needed to BE there, directing mostly, and kept the thought of how very worthwhile it would all be in the end in sight.

Thank you to those who've sent messages of support and welcoming into my new home. Your thoughts mean so very much to me. I always appreciate that someone has taken time from their busy day/life to send their thoughts my way... thank you.

I have some photos of the new place before we moved anything in and will take some of the finished view, posting them when I'm able (hopefully later this week) as I think others with mobility challenges will appreciate the features of my new place. More to come!

Now, I must nap as I can no longer keep my tired little eyes focused.

Love from my sunny, new living room,

Lisa

Almost there...!

2008-11-30T15:27:00.000-08:00

And I've not yet torn my hair out in frustration nor screamed bloody murder at anyone/no one - well, maybe that one time...

Then again, perhaps I shouldn't speak too soon, since tomorrow is the actual moving.

So after all my excitement for the Packing Party idea, I decided to ditch it for a couple of reasons; first, there didn't seem to be anywhere near as much to do as I'd anticipated and second, I was afraid of sending out invites sounding like a fun-ish party and have no one come!

I had one person say they'd come, then another... but two people, while helpful, don't sound all that much like a party. Besides, I think I'm more uncomfortable than I'd considered with people going through my stuffs!

So on the last day before the Actual Move, and I've yet to do a thing today, mind you, we're down to really just a few hard to pre-pack things: kitchen items, sheets and towels and our clothes. Hmm, that's not bad! Kitchen stuff I'm off to work on (whatever I can reach myself), linens can go in a couple of too large for anything else boxes and then clothing, well that can go into whatever works! My son has dresser drawers, which I think can just stay that way - take them out for ease of carrying. My stuff can go in another large box or 3... then just a few random decorationy things and some photographs off the walls into safely padded boxes.

Done! Well, will be soon.

I even scored a new (to me) very puffy, over-stuffed style armchair which another tenant left behind when they moved out the other day! It could use a cleaning as I can smell their icky room 'freshener' on it, but it will be SO comfy for my owwie leg! I'm so excited about sitting comfortably, you can't imagine. Actually, some of you can TOTALLY imagine!

Thanks to those who have sent encouraging comments, especially of late around the move and the pain clinic. I do always appreciate hearing from whomever stumbles across this here blog. :)

You were right, everyone; it WILL be ok!

Oh, and I almost forgot to say: I can't even express how EXCITED I am that I have only another day to labour over that flight of 14 stairs which separates me from the rest of my home!!! And I can't wait to see how they've finished my new place! I'm positively aquiver with the excitement and shall post photos when able - probably later in the week.

An Exciting Update - this time FOR REAL!!!

2008-11-27T10:53:00.000-08:00

OMG, I'm breathless with excitement! Seriously, excuse me if I babble in print...

While confirming a few moving details, I just received a phone call.

FROM THE PAIN CLINIC!!!!!!!!!!

I have an APPOINTMENT with an anesthesiologist there on January 6th, 2009 @ 10:30 am. He may, if it's thought to be of help, give me a nerve block or something right then and there! As they said "Hey *may*, but I can't say of course, do a procedure at that time" depending on if he feels it will be of use; the concern is that my CRPS/RSDS has gone on for so long without intervention that it might not really help. BUT since my symptoms have progressed and have spread, there's a good chance they'll be actively starting nerve blocks in an attempt to arrest the progression.... I can only hope and pray this will happen - and that it will work!

OH. MY. FreakingOUT. G*D!

I'm about to puke from the excitement and a little nervousness. Seriously, it's nasty. ;)

So much for my developing writing skills, all I can do is wiggle happily in my chair and squeal with glee! Maybe I should have waited until I was a little calmer before posting this, but I just HAD to get it out there NOW!

I'm going to focus on this 'positive freaking out' as opposed to my 'stressful freaking out' about moving in like 3 days!

An Exciting Update

2008-11-26T23:08:00.000-08:00

Not! Sorry, couldn't resist...

Nope, I was up this morning to send Boy Child off to school with enough food for lunch and dinner as he would head straight to work after school; I'm so proud of him, he's getting lots of training in many areas which is a great sign he might be asked to continue on after the holiday season!

After he left, I checked this here computer to see how it was doing; all systems seemed ok - well, those we have installed, that is. Speakers aren't set up to function yet, no Office installed (we took out everything for fresh installs) but I can access the 'Net and check my emails, albeit without the nifty mail client I like to use "IncrediMail" which utilizes hilarious 3D animations to your email (like when I send one out, it folds itself up like a paper airplane and flies away! Still amuses my silly self after several years!). Missing some bells and whistles, but I'm not complaining if I can get online!

So I did some more online moving prep stuff, decided I was still really tired and extra sore from yesterday. See, I went to my chiro after a few months of not going due to being so broke (have a few subsidized visits but there is still an extra cost on top that's not covered). But my hip was killing me again as it tends to get sorta jammed up into my spine and ribcage from unintentionally hiking it up to take the pressure of my painful leg. It's one of the few things which has helped and, since I don't the money to pursue other therapies, nor do I know what might be helpful and not harmful, I make the occasional visit to help that hip.

Now all my visits before to this wonderful chiro have been so helpful; I love him because he's the first I've visited who didn't seem to expect you to come in several times per week. Forever. Nope, not him. And he's VERY good with gentle adjustments and explaining clearly what is happening, how he wants to treat it and what to do for yourself at home (ie stretches, etc.).

Anyway, I updated him on this my condition and told him the scary part about the symptoms spreading and hoping to get into the pain clinic at the hospital ASAP, praying that some nerve blocks could halt or at least slow the progress, possibly provide some good pain reduction would be a bonus, eh?

Since I hadn't been in for a bit, he asked before he did EVERYTHING, including all the things he had been doing regularly in other visits, which I really appreciated. One adjustment he'd do on the side of my foot would be warm for a moment then would feel SO much better. This time, it set off the burning fires off hel... I mean CRPS in my foot and then my knee. :( It DID help my hip and back a LOT, as always, but I think that the nerves are just really pissed off right now and even more sensitive than they were before - just from where he had to touch my leg. It's also possible that if I had been in more recently it wouldn't have been such a shock? Hard to say.

What I do know is when I woke this morning (though I seemed to sleep pretty well, so that's indicative) my ankle and knee burned so badly. I mean, I know I'm having high pain when I limp to the loo (beside my room) during the night to pee and I have to grope for my cane and still stumble while using it to get the 10 or so steps to the potty, leaning on walls and countertops as I go. Ugh.

Just before noon or so, I decided I'd take my regular medications and the new one my doctor gave me to try for the muscle spasms, thinking it would be a good time to use it as it's made me quite sleepy! I'm to take 1 or 2 of them (clonazepam, for those who are interested in those kinds of details) depending on how they seem to help (my doc is so reasonable about listening to me about my own body! LOVE her!). Since 2 seems to have a good effect but make me fall asleep, I decided to have a nap after taking 2. I woke around 1 to a phone call, then passed back out. Woke up slightly at 3:30ish, thought "Ah, Boy Child is heading to work now" and passed back out. Woke up at 5:00. Uh, that is NOT what I was thinking when I thought 'nap'! More like 2 hours, not 5!!

Even worse, I woke up feeling a bit... er, hungoverish, I'd say (haven't really had one to compare, but for once and it felt like that!); kinda nauseous, dehydrated, scratchy-eyed and sweatyish. This might have been caused by falling asleep in warm jammies under my comforter but when I was trying to sleep I was SO COLD and apparently did not wake to kick off the extra blanket as I usually do.

I wonder if I'll be able to get to sleep tonight? If not, perfect time to finish off this EXCELLENT book on CRPS/RSDS: Living with RSDS (this is the Canadian Amazon site, but you can of course check on the US one or whatever). If you have this disease or know someone who does, get it, read it, share it; can't recommend it enough. Even after months of reading and although it was written in 2003, it has taught me more than I believe most of my doctors know about CRPS/RSDS combined!

Since I've frittered away my afternoon sleeping like a log, I will have to move some butt tomorrow. After Boy Child gets home from school, we're going to pack our little hearts out and Friday, I have my mom (nowhere near as helpful as one might hope and expect) and bestest friend, Ian (very much helpful!), taking the day off to come help me 'git 'er done' while Boy Child is off making some holiday dough for himself. Hopefully our fairly small space will be mostly taken care of with this day o' packing and I won't even need to worry about corralling people into helping me pack on the weekend!

Now for cleaning... nooo, must take one step at a time, Lisa! Remember, have until December 8th at 11:00 am to be done the cleaning and done it WELL!

Remembering to breathe and to breathe deeply, slowly and calmly. Aaaah.

Forgot to metion, but will tomorrow if there's time: cool session with counsellor where we did some visualization stuff. Pretty cool, actually! AND update on sought Child Support increase!

Reconnected and it feels so good...

2008-11-25T10:36:00.000-08:00

Ah, at last! I think all the technical errors with my new computer configuration may be behind me (let us hope). I was getting all spazzy about it; I mean, with such limited mobility especially, I have really relied on my computer to connect me with friends, to keep me semi-sane by writing and reading others' blogs, to pay my bills (online banking ROCKS) and researching, let's not overlook researching, which I do a LOT of, especially about my disorder/disease CRPS (aka RSD). Knowledge is power and I try to empower myself with the tools I'll need to fight my disease and keep strong, make sure my medications are the best options for me, keep up on breaking treatments, etc. - all things most doctors simply do not have the time to do for the multitude of diseases, disorders and other maladies they are to treat.

I've missed being able to try and sort some of my feelings into words here, actually. Having to consider what I'm feeling long enough to find the right words is therapeutic in itself, instead of having free-floating stress and anxiety, putting a name to it has been helpful for me.

Oooh, I almost forgot: I might have found a buyer for my lovely little scooter (the motorcycle one!). This lady is very interested, so I'm hoping it works out for both of us! Yay, again!

The comments I have been receiving have been an unexpected, but incredibly touching bonus for which I've been very grateful; it's helped me to feel less alone.

And now, I must dash off for a quick read of my favourite blogs; my apologies if I haven't commented for some time. I will be trying to catch up... but also packing! Only 6 more days until I'm literally in the middle of moving!

Due to ongoing technical difficulties...

2008-11-23T18:21:00.000-08:00

this blog may not be updated for a while!

Darned computer went pppft!! :(

Wednesday brought a few more positives

2008-11-21T01:29:00.001-08:00

... when I got a call from Motion Specialties (where the OT and I have been ordering my assistive devices) saying that the first of my items were in and could they bring them by in the afternoon? Then another call saying they were running a bit ahead of schedule, could they come by a little earlier even? Sure!

So helpful Craig arrived with my new sheet tent (cool metal bar device which suspends my sheets and blankets at the foot of my bed as the weight of even a sheet on my foot, especially the toes, causes horrible pains and cramping). Can't wait to try it out!

Also, he brought me my own padded tub bench, which looks identical to the one I'd borrowed from the Red Cross, but I can now return theirs so someone else in need can use it. Actually, Craig even offered to the loaner to the Red Cross for me - how very thoughtful of him!

The next batch of stuff will contain the toilet seat with grab bars attached, and two strong, textured grab bars for my new place's bathroom. The last order is for my walker and scooter, which is likely to be the trickiest to get funding coverage for, since it is the priciest order.

Just before Craig brought my things over, Andrea, my OT came over to review the letter she'd drafted to support our request for the items we had determined which would be most helpful and appropriate for me. Andrea was commenting on how difficult it has been even to get people a manual wheelchair lately, but that in Alberta, there is a list of pre-approved items available for those in need - they just need to be requested by the appropriate professional. Ahh, thanks to our provincial government, which is busily bragging how they've gotten us into a fiscal surplus. HI! Yeah, it's by slashing all the medical system and making things privatized; great if you've got lots of money to insure that, should you need medical care, you can just pay for the kind ot treatment you'd like to receive! Don't get me started about giving themselves pay raises AND cancelling the fall session (ie giving themselves both a raise and a vacation from their part-time jobs!). GAAAAGH.

I've always loved living in my province and, while I still adore the gorgeousness of it, these days all these lame policies and funding cuts to essential programs makes me think a LOT about moving elsewhere...

BUT, it is now a week and a half before my big move! I'll be inviting my local friends to help pack in the hope that we can make it fun and easy with many hands. I can't believe it's finally about to happen! What a relief to not have to struggle many times a day with that horrible, straight-up flight of 14 stairs!

What I haven't been writing about

2008-11-18T01:42:00.000-08:00

Recently, I found myself at home without my son, on a weekend evening, hanging out with bestest friend, for whom I have an extremely high level of trust. We've been through a lot of difficult things together and he has been so there for me in any way he can since I was injured - the injury which caused my CRPS.

Sometimes, and this is not unfamiliar to him, I feel a little weepy. I mean, I'm sorta a softy, smushy kinda person naturally, but with the incredible amounts of stress from losing my independence, my income, my ability to provide for my son.... not to mention the incredibly exhausting nature of living with chronic pain. It's natural that I need to let all of this out sometimes. He's not one for shying away from female things; he's a rather extraordinary man in that way (and in many others) and I've never known anyone quite like him. Nor have a had a close male friend like this and a hetero one, to boot. And still, I'd trust him with my naked, drunkenassed, completely inappropriate self (not that I do that, but I'm merely trying to illustrate his standards of moral and ethical decency). Further, I'd trust him with my child, which says even more.

So, we were hanging out and, feeling weepy, he was hugging me and was rubbing my back soothingly, which indeed was quite relaxing to me, because of our level of trust... I found myself beginning to relax, still sniffling and whimpering rather pathetically - party in current physical pain, largely in sadness at the general stressful state of my life. As I felt my body relax a bit, I began to notice another, growing sensating beginning in my belly. No, not that, you pervs. This was a rising, writhing ball of pain and anguish, the likes of which I have never felt. I mean, I think it was terrifying because I realized in my rising panic that this was all the anger, pain, fear and so on that I have largely had to stuff down deep inside me just to try and carry on.

As this twisting, rising ball of emotion threatened to make its way up my body to my throat, I had the overwhelming feeling that, if allowed to continue, I would just start screaming and with a sudden flash, I worried simultaneously that such a thing would be unacceptable, ugly and terrify my poor, unsuspecting friend. Thinking quickly, I realized it might be almost dangerous to unleash this.... this beast inside me on my loyal friend, despite his efforts to comfort me.

So I did my best to squash that beastie back from whence it came; it felt so physically painful to do so, like I was swallowing something enormous, quite literally. Sensing something else was going on, I was vaguely aware of my friend asking about what was wrong for me, but I was unable to answer, certain opening my mouth would unleash this unspeakable ugliness.

I spoke to my counsellor about it today, saying at the time, it immediately came to me when she had wondered aloud at how much of this pain, anger and so on that I had been 'stuffing'. I knew immediately that this is exactly what this was.

I told her that I was unable to talk to my friend at the time at all, but that the next day I was able to manage to summarize what I'd been feeling and my worry that it would be just too horrible to actually let whatever wanted to come out... to just come out.

I mean, what would that look like? It's not 'acceptable' in our culture to express our grief loudly, as far as I can tell. We're supposed to be sad for a bit, then move on, tidily, too. And what about anger? Women especially are conditioned to not be angry; nice little girls aren't angry. Boys, maybe, but not girls. And if we're ever allowed to be angry or sad or scared, well it had better be... nice, or pretty or... you know, tidy.

What would this thing LOOK like? Oh, gee, would I really have just screamed in pain, both physical and emotional?

I mean, ok... it's not like I haven't, actually. But into my pillow, alone, where no one else would see or hear. Or know. Well, I guess now a few people know.

But this has me thinking: what the HELL is that doing to me, having all that ugly, TOXIC crap inside me?!

I feel, of course, like it's my fault. My fault I haven't just DEALT with it, already. And I SHOULD since stress like that can just exacerbate my CRPS. Of course, another way things are just my fault.

But in my own defense, I'd like to know how someone else in my shoes might handle this. And while they're there, if they're able to do a better job, could they clean my house for me after I move at the end of the month? You know, since they'd be so much more capable than this 'me'.

Seriously, I am and will be working on ways to allow that nasty toxic monster out. Maybe not all at once in one terrifying, screaming explosion, but perhaps letting it off the way you shift the pot lid to let out just a little steam at a time, to prevent a big blow up.

It won't be easy, it won't be quick, and it might not be pretty... but dammit, I deserve to not cart around that horrible, scary beastie any more than I have. I just have to remind myself of this. Often.

Phew! A few more things checked off under 'things to do'

2008-11-12T13:44:00.000-08:00

This morning, my occupational therapist came over with the sales rep from a local mobility/medical supply store. He brought 3 different scooters for me to try out, to see which fit my needs the best. They all had their pros and cons, but I was leaning toward one in particular. Too bad the forward foot area was a little too small, which is an important consideration for me. He did say they could probably make a little bracketed thing with some ABS plastic ? to extend it slightly and protect the foot in question... the next likely one was pretty good, too, but I didn't like the handle grip as much; seemed fatiguing, but he tells me it's available with the other kind of tiller which is more ergonomically friendly. Hmm, lots to decide on here! I'm waiting on an email from him with the other model to consider and we're going to the showroom on Monday to look at walkers and then I'll decide on which scooter we'll apply to have paid for by the government. Fingers crossed they're not in one of their 'Scrooge' stages as the OT said that lately they've been rather stingy, even with requests for manual chairs. Hmmph...

I was just replying to comments on my last post when the pre-move inspectors arrived to check out my place. They confirmed that my carpeting is due to be replaced where I'm moving out from so I don't need to clean it, just vacuum. Yay, one less thing to worry about. Also, the flooring in the bathroom and kitchen is being replaced, so the floors are not a concern.

I showed them a few other minor concerns which they noted but they were quite happy with the condition of the place - this bodes VERY well for my damage deposit being returned in whole, provided that I leave the place very clean otherwise. Phew!

Because I received short notice for the transfer, I can move into my new place on December 1st, but I have until December 8th to clean the old place. YAY, that's so amazing! They were actually quite civilized about the whole thing, telling me they were willing to work with me on the move out, recognizing that it will be difficult, etc. OMG!

Also, my OT confirmed that the new place, having tiles around the tub/shower, can have grab bars installed IN that area, as the current place has a fibreglass surround that you can't do that to. ANOTHER good thing!

You know, the last almost 3 years have been such a horrendous struggle to get anything done, or any kind of help - like having to pursue and advocate for medical help when I KNEW something was wrong with my foot! - it seems foreign and a little scary almost to have things moving along more easily. Like maybe I'll run out of 'luck'.

But I'm trying to keep up the faith that things are and will continue to work themselves out, that the important parts are being tended to (pain clinic, moving, assistive devices on order) and things will ultimately be OK. There have been a lot of times where I just was not at all sure anymore that anything would ever go my way. At all.

NOW, for that Workers' Compensation Appeals Tribunal decision! Ahem! I'd like those thousands of $$ back in prescription costs, for one; also, the permanent partial disability award and the chronic pain amount, too. Just putting that out there. Again. You've gotta announce to the Universe your needs and wishes, help bring them into being. It's been working well lately; will just keep doing what works for now.

Once again, thanks to everyone for their support!

PS This blog was never intended only to chronicle my journey to getting help for my injury/CRPS and the myriad hoop-jumping which has come along with it. After the move is over, I hope to begin exploring my other interests and thoughts on life, which was my focus before taking the unexpectedly full-time job of being disabled and living on disability assistance. Oh, how nice that will be to write about other, happier things! :)

One more step in the right direction

2008-11-12T00:21:00.000-08:00

So, I was right; after seeing my pain management doc at the chronic pain workshop where he told me he just received a letter about me from my GP, he DID specifically tell his assistant to get me in ASAP! He said as much when I saw him today, an unusual day to see anyone, since it's a statutory holiday! Which was good because it was very quiet and he had lots of attention to give me.

He said 'Let's pretend we've never met. Hello!" He's funny like that. Then "Now tell me what's wrong, without all the assumed diagnoses." So I listed of every single symptom I could think of (I brought notes!) and especially noted the new ones/new areas being affected.

He said he'd rather hoped I'd be one whose CRPS (complex regional pain syndrome, a.k.a. reflex sympathetic dystrophy) just 'burnt out' after a while (there are some fortunate folk who are either cured of their CRPS or experience a remission that can last months or years but then experince a return, sometime much worse, than ever before. It's all very much unknown even how these things happen). He unhappily stated what I and my doctor had agreed seemed to be happening: it has gotten worse/ is getting worse.

One of the things my GP and I discussed was the local pain program in one of our hospitals. She said there was a good year's wait... but hoped that pain doc could bump me along a bit on that waitlist...

When I was at the chronic pain seminar (a joint project for National Pain Week between the the Pain Clinic at the Royal Jubilee Hospital and the Pain Victoria Chronic Pain Support Group) they spoke about their triage for the program (how they determine who gets in next) and, after cancers and ischemia, CRPS is next in the Urgent category, the highest priority. Helpful pain doc said it just so happened tomorrow he is going in to the clinic for a meeting and he 'just might' mention a Ms. Lisa Moon there, lol. Well! Please DO! But any helpful mentions aside, my condition IS on their list of urgent, prioritised conditions and, because it's on the move, they will want to assess things. He is unsure if the nerve blocks that are sometimes recommended would benefit me due to the late diagnosis I received, but at this point, I'm willing to try it.

The pain clinic is quite holistic, utilising a multi-disciplinary approach, which I wholeheartedly agree with. Yay! FINALLY. Further, I noted on their website that they have a section for Complex Case Rounds where a team member presents the case in question to a group of professionals from different disciplines to brainstorm together about treatments, etc. etc. (Beth, are you getting this?!) I just hope it's even partially as good as it sounds!

Pain doc said he'd address my referral letter to a certain other anesthetist he'd like to assess me to see if the blocks might be of any use. Since the understanding of CRPS is growing and changing all the time, there is much differing opinion about what treatments are most beneficial.

I'm just relieved to have a chance to see someone familiar with my disease/disorder as I've felt for a long time that it's just sitting there, possibly missing valuable time to stop potential progression. Well, now that's happened/happening, so let's get to it before more damage is done!

{pauses for a deep, calming breath)

It's all so much to take in and I haven't even mentioned my upcoming move yet!

Yes! So, moving is scheduled, ready or not, for December 1st, but I have a week after that to clean my current residence, which I'll need as 1) it might take longer than a day to move everything and 2) I'll definitely need time to clean very thoroughly as I want my darned damage deposit back - every last penny of my $500!

Apparently my disability will allow some assistance with getting movers to move my stuff. I've got to get 3 estimates and supporting documents as to why I cannot do it myself (which is so ridiculous, if you'd seen my disability application, you'd know why!)... blah blah blah. Sigh. Personally, I'd much rather rent a truck and get my friends to help me as, unlike last time, I have enough people who would be willing and able to help. Movers tend to be uptight about everything being in a box, packed to stack like mad... which I'm sure is efficient, but I find there are many things that just don't like to be packed, if you know what I mean.

I'm going to host a Packing Party the day before, at the suggestion of my friend's mom, inviting everyone I know to come over, chat, have drinks and munchies and make fun work with many hands out of this drudgery of packing! I mean, the first thing I wanted to do when I accepted the suite was to go home and pack, but looking around, I couldn't find much of ANYTHING I would want to pack now and might not need before the end of the month! Just books, really and those would just be in the way more if I put them in boxes rather than having them sit tidily on their shelves... so my answer is to get it all done at once. I've got the Friday and Saturday to do some preliminary stuff before the official Packing Party - that way I can get any potentially embarrassing items out of the way. Ahem. (I don't care if my friends see my adult Toy Box, but not my friends' MOM (or mine, for that matter)!

In other news, just as a mental sorbet to cleanse the palate, my son got his first 'real' job, a part-time, seasonal position at a clothing store - a store where not only does he get clothes, but his MOM gets clothes, too! That doesn't happen too often; he's 16, I'm 35!

Anyway, I'm very proud of him and he's pretty darn happy, too. He looks forward to being able to buy some presents with his own money, pay some of his camp fees and maybe save a little for a video gaming system, too. Oh, then there's that staff discount... And they did NOT take advantage of our province's uber-sucky $6/hour first-time job minimum wage crap, not even the regular $8 and hour; he'll be making $9 to start! He's pretty darned happy; lots of money to him!

Well, now; I see it's quite late and I've got a busy day tomorrow. There is supposed to be a scooter trial happening FINALLY (should have been 2 or 3 weeks ago! Let's hope it's not pouring rain like it is now...) and also, someone from the building management is coming for that pre-move inspection where they make sure you haven't trashed the place... the final inspection comes after I move out all my stuff and get a posse in to help me clean it top to bottom...

Ugh! 1am... and that alarm will be going off at 6:50... good grief! Too much excitement!

It's Official: I'm moving within the month! Oh, and some chronic pain news, too. :)

2008-11-06T16:58:00.000-08:00

Yippeeeeee!!!

This afternoon, I played 'bad mother' and kept my teenaged Boy Child home from school to go to the viewi... I mean, to look at the potential new place (haha, yanub! I didn't make it sound like a funeral! But oops, I forgot to wear black. ;) ).

It's not in quite as good shape as our current place, BUT since it's currently being renoed inside, it should look considerably better when we start moving in. I took my camera, but left Boy Child with it to take pics and video... um, he took pics that were mostly too close to the rooms, like you would if you were taking a pic of a person IN a room, but which don't let you see a lot of the room at once or get much perspective on size and space. And the video was more useful, but he was going for funny more than informative - to my needs, at least. In other words, no looking at the floors or panning across the room to see the whole thing; more like his face, smiling going 'this is the front door!' and so one. Oh, well. :) He and my bestest friend, Ian, busied themselves while I talked to the caretaker. Ian took measurements which are recorded on the video - which actually worked out great.

Besides having NO stairs, not even one at the front door, the entry area is linoleum and quite large, with a huge coat closet; enough room for all our coats, including Boy Child's hoodie collection, massive shoes (men's 13!) and school bags... plus mom's bag collection and even guests' coats! Imagine!

Then, the hallway is quite wide - wide enough for my walker and even a wheelchair - and this is NOT a wheelchair adapted unit! First the hallway goes straight down to the laundry room (big!), bathroom, linen closet and both bedrooms.

The bedrooms are a bit smaller than our current bedrooms, but it's made up for in the living room and dining room areas, which are more important to me!

In fact, the maste... um, MISTRESS bedroom has... get this... a WALK-IN CLOSET! OMG! I would NEVER have imagined that in a family, subsidized housing complex! Guess it fit with the layout of the unit, which is at the end of the building - which also means lots of windows in the living room/dining room... which is also south facing. Our current place's living room is west facing; in the summer, it's DANG HOT in there!

SO, back to my giant, walk-in closet. Of course, I'm in love! There's hanging rods with shelf above down either side of the closet. It's got plenty enough room to walk in, WITH MY WALKER, sit on the walker and decide what the heck I wanna wear that day! In fact, I will be able to hang ALL my clothes, which is much easier than bending down to or stretching to reach stuff, as I do now.

Boy's room is pretty standard; a bit smaller than now, but definitely workable. He'll be happy once he gets all his posters of fantasy/Japanese kind of stuff... make it his own.

Did I mention my incredibly cool closet, haha?!

Yes, I AM excited. What was your first clue?!

So, where was I. Right, the living room is quite long and looks like it will lend itself to having the seating and TV area toward one end while leaving some space for my home office, too. Then, I'll have room in the dining area for my dining table which is an improvement as currently my office stuff is crammed into the dining area with the table. Not too much room to use the table because of that.

Although the front of the apartment is off the parking lot, it's only the front door; the living areas of the suite are all toward the back and side of the building, so it will have some privacy and should be pretty quiet.

Beside the end of the building is a playground area, fenced in, suitable for younger children. Beside that is the laundry building which I believe they said also has a community room. I have my own washer and dryer, but that's handy just in case.

There were only a few small things I wasn't too fond of: the grout in the bathroom looked pretty sad, as was the toilet seat. The may well intend to replace both of these things since they're reno-ing, but I'm going to make sure they're aware they need attention. Good part is that since there is no tub-surround made from fibreglass like my current place, they will be able to put grab bars IN my shower/tub area, not just outside it! YAY for safety - what a relief!!

The carpet in the hallway was a dark, mixed colour, almost black, really (good for not showing dirt) but they did say all the carpets were to be replaced which is why I asked for another option. I'll remind them of our agreement on placing lino throughout the unit. This makes life much easier when you use wheels to get around and it's easy enough to dust the floors to keep them clean.

AND we're allowed to have a KITTY there! OMG, soooo exciting! That large laundry room (my friend measured it at 5'x10' with the hookups along one side and the door is on the end... it's straight in for me, great for that walker again! I just realised that the laundry room would be the ideal place to keep the kitty's litter pan out of the way, but accessible.

Even though the cabinets in the kitchen look a bit more worse for wear than the ones we have here, at least they were white (or were they cream?); our current place has that faux-wood look but the same material as the cheap countertops. EXCEPT. Except, instead of some shade of brown to look like wood, the wood-look grain is... PEACH. Yeah, *peach*. What the HELL were they thinking?! LOL.

And the storage shed/room which is outside the suite is WAY bigger than the one I have now, which is already a good size! Lots of room for bikes, sports gear and my worm-bin (used for composting!) and the patio chairs in case I want to bring them in during the winter.

The only obstacle for wheeled items would be the one stair from the living room through the sliding glass doors to the patio. But, since I will be using that door far less than the front door, that's something I can live with. Also, the bathoom door opened slightly awkwardly, but the tub is a more normal size than my 'Japanese econo-sized' current one!

Anyway, it all looks good. And I was just saying that the room I have now, which is generous in terms of room around my double-sized bed, is less important to me than the actual living space. It looks like this place delivers!

Now, for the 'fun' parts; packing then the actual moving!!!

In other news, last night I attended a seminar on Chronic Pain during this, the National Pain Awareness Week. There were 3 panels of speakers; the first 2 talked about "What to say in the doctor's office"; the next 3 were patients speaking of their own journeys and observations; the 3rd panel was comprised of 2 anesthesiologists, one being the head of the hospital's pain clinic, the other being the pain management doctor I'd seen in the spring.

I actually saw my PM doc around the snack table and said hello, re-introducing myself. He said he'd just gotten a letter about me (my doctor re-referring me to him, with concerns that my symptoms have been spreading, the meds working less, too). I said I'd hoped to pick up some info there and he said, gesturing around, that we, as patients, were the experts and that the other people were who I could benefit from most. Interesting.

Anyway, this morning, I received a call from his assistant saying that he'd requested to get me in and that they had my letter from my doctor. She then asked if I was able to come in next Tuesday (yeah, Remembrance Day!) that they were actually open that day (he is only in his private practice on Tuesdays and Thursdays and works at the pain clinic, too).

OMG. I just got an appointment with the specialist in LESS THAN A WEEK? Wondering if the morning appointment she offered was a cancellation, I asked if there was any chance of an afternoon appointment (mornings are often slow going for me) and she gave me another time which will be great. Wow!

Also, she asked how I was doing when she identified herself, and actually seemed interested in my reply - not at all the usual blasé attitude of professional disinterest. I replied that I was hanging in there, and she made a sweetly sympathetic 'aww' sort of reply. Gosh, it was more like talking to a friend. I was so surpised!

I don't know if it's because I've already been in or if he's just willing to get me in quick to take action if there's signs my CRPS is spreading (which it does and has). At any rate, I'm VERY happy and hopeful. Since he's the guy who does them, my main interest is finding out about getting a nerve block (or blocks) or even other treatments.

I feel really positive about these actions, like things are starting to fall into place more and more. It feels FANTASTIC to have positive things to focus on, to look forward to! And also, to tell my readers about here. :)

Canadians watch US elections, too! Oh, and 2 tiny updates, too.

2008-11-05T01:01:00.000-08:00

And they hop around like a fool, excitedly watching the results coming in!

And squealing in delight and wonder!

FINALLY! And funny, that our Prime Minister snuck in an election he made a law (ruling? gah) saying it wouldn't happen until a set time (he broke his own law!)... many feel he purposely did that before a possible Democratic win in the US made people thing twice about supporting his Conservative party here.

Sadly, so many were so disgusted here that voters turned out in record low numbers, to give them the same, weak minority government.

The American president is of great interest to many Canadians; we do much trade with the US, of course, and being geographic neighbours, we have many things to work together on.

I'm tired and shouldn't be attempting to write at the moment, but I was so excited to hear the results, I had to post! I have such excitement and hope for the change that Barack Obama has the opportunity - and I believe the competence - to affect that we will all benefit. Even us Canadians!

Next update should be: Lisa goes to FINALLY see her potential new apartment!

I did call the housing agency today to ask when I could view it, since hello! it's less than 4 weeks until the end of the month! BUT they said they could give me until mid-December, really, to move in and clean my outgoing place - and that they would 'work with me on this'. Phew! I was told to expect a call tomorrow (or Thursday 'by the very latest') to set up a time to view. Oh, joy, this moving thing is edging closer and closer to the holiday season (although we do not celebrate Christmas in my home, we do celebrate the Winter Solstice or Yule, which usually falls on December 21st or so... even sooner to that move, yikes!).

Yanub: I didn't get another term to use which doesn't sound like a funeral to you! Perhaps... 'showing'? Or something else?! LOL.

The occupational therapist called today and I've got a scooter trial date for next Wednesday, where the dealer will bring a couple of models to my home to try outside, driving around on the sidewalks, etc. Yippee, finally!!! (apparently the rep was away for a while - of course, more bad timing).

Tomorrow I'm attending a seminar on Chronic Pain which features several speakers, one of whom is my pain specialist. I'm going with a friend (lovely, supportive Ian and we're taking notes) and I'm excited to get some good info as I'm preparing to return to said pain specialist soon to discuss what seems to be progression of my disease... I'll be freshly armed with good info!

Good night; my brain is more confuzled than usual!

Your Support Means So Much To Me - Shout Outs! and a PS at the end ;)

2008-11-03T15:09:00.000-08:00

I just want to say an extra-special THANK YOU to everyone who not only reads my little blog, but takes the time to write a comment of support.

When I wrote the last post, I was feeling so down, it's so easy to just lose that sliver of hope I've been holding onto, that things will be OK... that it will all work out and I just need to hold on a little longer... but with blows like that medication not being covered, it feels like the last bits of fight are draining out of me.

Having people - virtual strangers, really - take the time to empathise, offer kind words, even to shake their heads with me at the senselessness of it it... I really am so grateful for you; your words help me to feel much less alone and scared.

Well, honestly, I'm still scared but your words are helping me to keep holding on, just for that little bit longer... I keep hoping any day that what I need will come through - some leftover sample packs, like the amazing donimo helped me with a while back (you're AWESOME!); I still treasure the sweet card you sent me - it makes me smile each time I see it; another avenue to try (thank you for your incredibly sweet efforts, alessea, who also lives with CRPS and has first-hand understanding of the beast that it is. Get better soon, my dear!); the always stunning Elizabeth, who makes me laugh, makes me focus my anger at the messed-up systems we must navigate and renews my efforts to FIGHT those buggers! Beth, your postcards mean so much to me, I can't even explain it well. You have an incredible gift and I'm privileged to see it. Behind the scenes, Paula sent me some much-appreciated info on fighting an annoying and potentially dangerous side effect - SO much better with that! abi, your support across the oceans is very appreciated. I enjoy your insights as they are very thoughtful and gentle. yanub, who shares in the frustration when that is all there is to do; comiserating can be positive and you do it well, my dear! Nickie, who also has CRPS/RSD, had some very practical suggestions for non-drug pain control that were really great! And last but never least, Maria, who was my first contact of someone else with CRPS/RSD and who is amazing me pursuing a graduate degree with the dream of helping others with her amazing spirit, knowledge and sheer determination - and though I miss it so, I am glad to miss reading her blog since she is busily pursuing that dream. Maria, you have helped me so much with your intimate insights. Your writing helped start my journey with blogging myself and finding other blogs, so an especially big hug of thanks to you!

Some of you I've found through my research, some of you I've found through Screw Bronze! and some of you have found me through Screw Bronze! No matter how we have connected, I wanted to say to each of you that thank you doesn't come close to what I'd like to say. Blessings to each of you wonderful people. I do hope I've not missed anyone here, as my once-impressive memory continues to confound me with its lessened ability to remember the most basic, simple things at the oddest times... know if I've not listed your name, you are still VERY appreciated!

Each of you have contributed to my education and helped me deal with the roller-coaster-like ups and downs of living with Complex Regional Pain Syndrome, aka Reflex Sympathetic Dystrophy. I can't imagine how I'd be coping (or not coping, perhaps) without the brilliant gems of information, advice and assistance each of you have provided.

I vow to keep writing, to keep it 'real', whether that means posting my fears, disappointments and pain AND those good 'little steps', outright good news and, praying soon, to write an elated post about my Victory Against Workers' Compensation!

You are all in my thoughts and I'm so humbled to have been a part of yours.

Thank you for helping to carry me along when I've not felt I could continue.

Much love and friendship to you all.

Lisa Moon

PS For those of you who have been following my quest for non-staired accomodations, on Halloween last Friday, the tenants of the unit I'm eligible for moved out and I'm awaiting a call from the caretaker to arrange a viewing. I had hoped to hear from him today, as I sit on pins and needles (figuratively, but with CRPS it feels literal, ha ha!). So far, I have not, and I'm trying to be patient! See, if the place will work for me, I can move in for December 1st and need to get ON the making arrangements to move - a LOT of things, as anyone who's ever moved surely knows! Fingers crossed he calls before today is out or at the latest, by tomorrow! I'm counting the hours in the days, and am already making plans to get help with packing, etc... you'll hear when I do! :)

Unhappy Update :(

2008-10-31T14:02:00.000-07:00

I saw my doctor last night. She informed me that she spoke to the Special Authority people about what she had to do to get my request for coverage approved.

Apparently, there is NO WAY that particular medication will be approved for me or anyone else, ever. It is not covered and will not be. You're expected to use the other, similar-acting drug which is not new, much cheaper... and the one that didn't work for me.

I can either keep paying for this Rx myself, dodging being able to afford groceries and bills, trying to keep juggling as I have for the past several months... or I can go back to the covered, but seemingly ineffective other Rx. Oh, and I can expect within a couple of days to feel like my leg is both being dipped in molten lava AND being simulaneously electrocuted! Yipee, me!

Thanksverymuch, BCFucking"FairPharmacare".

Once again, I must not forget to rail at the real criminal culprits here: the Workers' Compensation Board aka WorkSafeBC (as in, WorkSafe, cuz we won't help your ass if you get disabled on the job! Even if it's NOT your fault!!!). Yes, thanks to them, I'm farther in debt than I've ever been, have no where left to go down that road, can barely make my payments and oh, YEAH, have been diagnosed with an incurable, expected to be life-long, progressive, degenerative nerve disease! All for doing my JOB - and well, I might add!

I don't know how much longer I can keep this up; I'm ALWAYS fighting, always struggling. I have nothing left. Even though I hope to return to very part-time work in the new year, to do so will require major effort to find something/somewhere that will accomodate my new needs. I have no chance at being able to afford to move out of the family housing where I live in a city with 0.04% vacancy and average 2 bedroom apartment rates being well pver $1000/month (to put that into perspective, I don't get much more than that, including child support and disability benefits, per month to take care of myself AND my teenaged son!).

I've been handed a sentence, it seems; Life - Without Parole, but with plenty of poverty, pain and several systems that just don't give a shit, because they are making themselves and our precious provincial government, a crapload of money (our illustrious Premier has braggingly brought us into a place of fiscal plenty - by hacking away at all of our social programs, like the ones that might have been helping me right now. Oh, and he gave his ministers a 30% RAISE just recently - screw you, bloody peasants!). Wish I had just a LITTLE tiny bit more, just to pay for these damned expensive Rx drugs... :(

I've TRIED to stay positive, I'm TRYING to hang on until the Workers' Compensation Appeals Tribunal can - hope and pray - force WCB to pay for all of my Rx drugs and reimburse me for the several thousand I've already spent on them. My Advocate (i.e. government lawyer to help you fight that system) hopes to hear a decision for the end of November, but they don't owe me a decision until the end of January...

I'm so damned tired. I just don't have the energy, let alone the money, to fight these corporate pigs anymore.

The last time I ran out of this particular Rx, Lyrica, I tried just going without, tried taking just half of my Rxed dose to stretch out my supply... nope. Within a day, I was in screaming agony, willing to pay any amount just to make it stop.

What do I get in the meantime? More opiate drugs to try and mask the pain (they don't even come close to knocking out the nerve pain, which is what Lyrica does).

I'm trying to look at the 'good' parts, like getting to move into a stair-free place. Except I'm honestly not super-thrilled about the location of the unit I can look at next week. It's not at all in a good part of town; not just not great, but really less than ideal in many ways. As in you probably wouldn't choose to live there unless you had to. I'm really trying to be grateful for what I have, but everytime I try to stay 'up', something else is knocking me down and I just can't fight my way up much longer. Drowning sounds like a pretty darn good alternative now.

I'm still occasionally volunteering for the Together Against Poverty Society (TAPS) an incredible local advocacy organization here in Victoria, who help people apply/appeal applications for disability and income assistance issues, as well as tenancy for the city's most vulnerable, who would otherwise have no help. I'm also going to depend on them for help, to try and force the disability benefits people to help me out somehow or other, with issues like being able to afford to move into this one-level apartment coming up... otherwise, how I am supposed to rent a truck, etc. etc?!

TAPS are great and everytime I'm there, I can see how the 2 paid assistance advocates and 1 tenancy advocate are swamped and just trying to keep up with the massive demands on their time for assistance. They are truly dedicated people. The disability applications are managed by well-trained volunteers, supervised by a coordinator who matches applicants with a volunteer.

Considering the massive, despicable funding cuts to social services in this province - the ones that created the fiscal surplus! - we should all be proud to live in BC... and should DEFINITELY support that wonderful Premier of ours (who doesn't deserve to be named, if you ask me. You can find him online; look for the asshole who got arrested for driving drunk while on vacation in Hawaii a few years ago. Yeah him *Cringes in embarrassment.*)

I digress, I suppose. There are others worse off than I and like I said, I'm trying to be grateful for what I DO have, but it's getting harder and harder every day when I get told stuff like "Sorry, no Rx coverage for you! We don't care if the other Rx didn't work! Buh-BYE!"

I was working on selling my scooter (the motorcycle one) to trade for a small van or something. IF/when I can sell it (not a popular time of year, apparently) the money will likely be going to - fun! - my Rx expenses.

Is it just me, or are things incredibly unfair, to say the least?

The little steps of progress... and a few random updates

2008-10-28T13:14:00.000-07:00

I almost feel a little guilty for not updating recently, but not too much! I'm trying to take better care of myself, get my stress levels - and therefore my pain levels - down, so took a little break.

I spent last weekend house and doggie-sitting with my friend, again. (His parents travel often!). It's such a nice, big house in a fairly affluent area of town called Gordon Head, which is quite close to our university. It's nice just to get away from my place, feels like a mini-vacation of sorts. I think Maggie, the elderly 'puppy' I refer to, was kinda choked that her 'parents' had left her AGAIN, but she calmed down after the first day and was happy to follow me around, lol. It's nice to have a furry friend around, especially one who likes to curl up on the bed and nap with you.

Ian, my friend, likes video games, though I only like 'old school' Super Mario Brothers; I seem to suck at the newer gaming systems and honestly have almost no interest in them whatsoever.

However, Ian decided to buy a new accessory and game package for his Playstation 2 called (I think) SingStar - or something like that. It's basically karaoke with an optional competitive game component; you can challenge yourself to hit all the right notes, etc. or challenge a friend, sing a duet, etc. I was really shy at first. I've always had a phobia about signing when people could hear me. I remember being self-conscious about my voice from the time I was perhaps 6 or 7 when I noticed other little girls had high, clear, soprano-ey voices. I did not. I remember feeling ashamed of this somehow. It's likely simply that I'm in the alto-ish range or something, which I actually prefer to listen to myself, but it's funny how that early recognition of 'difference' stayed with me. I was a confident and happy child otherwise at that age...

Anyway, since Ian and I have been through a heckuva lot together in the relatively short time I've known him (the Ianaversary is November 4th), we just bonded like I have with female friends over the years - quickly and with great trust and openness. But he is a male, and a heterosexual one at that. He is NOT, however, your 'typical' male in many, many regards, from having mostly female friends all his life (because those alpha-males tend to not like the sensitive, intelligent types like him, I gather) to his parents instilling in him really great values including the knowledge that women are every bit as capable as men (if not more so, he says!). I LOVE his parents, they are TOO COOL for words!

Anyway, my point was if there was anyone I'd be brave enough to sing in front of, it would be him. After all, he wasn't about to laugh at me - I hoped!

So, we turned on the game and sorted through the songs to sing to. You can adjust how much your voice is heard over the microphone versus how much the original artist is heard. Starting off mostly hearing them is helpful! Ian got 3 different discs of songs, ranging from pop to rock to alternative and grunge. Fun!

Super embarrassing admission? I did really well at... er, Britney Spears' "Baby One More Time." I mean, I can't say I'm a Britney fan per se, but it's not too fast, too slow or too complicated in terms of melody, so it worked out pretty well. Plus, her voice isn't too high pitched, unlike some of the other female singers on the discs.

We also did some duets to White Stripes "Blue Orchid", Lighthouse "Hanging by a Moment", 3 Doors Down "Kryptonite" and many more. It turns out I'm good at this because, even though the songs aren't ones I knew the lyrics too, I tend to remember the music part, or the 'gist' of the song, how it sounds... so singing along was pretty easy for me.

And FUN! Did I mention yet that it was a LOT of FUN?! Who knew!

I don't think I'm about to head to our local karaoke bar to sing in front of people or anything, though. Heh.

Housing update: As I had guessed, but the housing provider woman didn't seem to notice, that when she said I could view the unit 'next week' (meaning this week) that Friday is the 31st and that would be the day the current tenants move out. So really, I'll be able to view the suite next week. SIGH. One more week to wait! Aaaagh, the waiting!

BUT I am very hopeful that the place will be suitable, give me enough room to move about (even with a walker or whatever) and most importantly have NO STAIRS! YAY!

I am soooo excited.

There is much better transit access, too, with a bus stop literally in front of the complex (but I'd be away from the street so don't have to hear the traffic!), and another two bus routes around the corner, but on the same block! Yippee! The freedom... I can almost taste it! :)

I also received approval from handyDART (the door-to-door transit service) and one of their photo ID passes which will allow me to purchase these fabulous Taxi Saver coupons. You pay $40 but receive $80 worth of coupons to use in local taxis, great if you get too tired to bus, or the weather is atrocious. What a deal!

Also, yesterday I met with my new counsellor for the second time and she's so great. I could tell the first time I met her that we would just 'click', that she understands me and will be able to offer me the feedback and guidance I am looking for. She's already made a few really clever observations and has been very kind in praising how well I've managed to advocate for myself thus far, etc. Not like I had a choice, I said... we do what we can in these situations, but it sure is nice to have some positive reinforcement once in a while!

Also, before the counsellor, I was able to visit my friend with the new baby, who was sleeping in a baby wrap on mom's chest when I arrived. We got to have adult chat/catch up time before he awoke and then I got to have some baby-holding time, soothing him while he fussed a bit (he'd like to nurse even when he's asleep and poor mom just needed a break from non-stop feedings!). It was neat to be able to do that for her and she was pleased at how well she thought I handled it (tending to fussing baby). Her hubby isn't able to soothe him (since he just wants the breast all the time) so feels like he's not doing it 'right'. I assured them that it does get a little easier as time goes on; baby will develop more of a schedule and the nursing will come like second nature. They were happy to hear this reassurance! After all, baby was just 23 days old... he's still adjusting to 'life on the outside' - then again, I feel that way sometimes, too!

More good news - part 2 (now with update!)

2008-10-21T16:05:00.000-07:00

Well! I certainly like having good things to report for a change! Let's keep that going, shall we? (Asks Universe to cooperate)

Yesterday, I met with a new counsellor, who likes to take extra time (1.5 hours instead of 1) when first meeting to allow for time for the Centre's policies, etc. to be reviewed. I really like my counsellor's approach and I think we will get along splendidly! We both felt really good about the meeting at the end and are eager to meet next. Yay, finally, someone I can work with about these crazy roller coaster feelings on disability, the stress and strain of lack of income, independence and help from WCB... etc. It's great to write it here, but I know for myself it can be invaluable to have the right person listen and offer feedback. Yay, #1!

Then today, I got a phone call from my housing provider regarding a potential place to move that has no stairs for me! Yay, #2! It's going to be redone inside, new paint, linoleum and carpet. Uh, carpet?! My son is really, really sensitive to chemicals and whatever garbage (formaldehyde and godknowswhat) they put in new carpet. In fact, when my neighbour got new carpets here a while ago, he couldn't be in her place. I even was getting a headache after being in there for 20 minutes or so. SO I asked if they would put laminate or something in, but they have the cheapo carpet that's durable. The other issue would be my use of a walker (recent) and (soon) a scooter and/or wheelchair - and the possible mud/dirt getting tracked in from that.

I called back to clarify I didn't mean they should pay for it, but that I would cover the cost if they would OK it. She then called back having checked with the caretakers and said they would put linoleum throughout the place for me if I planned to stay for a while - as people don't usually want no carpets! I said SURE!

But there's been a small glitch: seems the housing provider information has the unit listed as being a 1 level (the building has 1 level apartments at ground level with 2 level townhomes on top, also known as 'stacked townhouses'.) But when asking about my flooring request, there was some discussion as to whether or not the unit was really 1 level or 2! Aaak! She said she would call me back as soon as she heard.

Anyway, the unit wasn't in one of my chosen buildings, but it's not too far from where I am now and there's no way of knowing when another suitable unit will come up; could be next month or years from now. (When people have subsidized housing, they tend to stay, especially with our >1% vacancy rate and the average 2 bedroom being around $1000/mo or more!). It's still close to the bus route for my son's school and a little closer to town than I am now... really, it's only a 5 minute drive from where I am. BUT, no stairs!!!

A family that lived in our complex but moved due to needing a larger unit now live in that building, so we'd know at least one neighbour family, which is nice. It will also mean getting away from the nutbar next door and her potential for seeking revenge for my calling the cops when I feared her beating on her kid. Ugh.

So the question was, do I grab this now while I can, or wait and see if another building that I'd like more/better location comes up? I'm thinking I should probably just grab it if it's decent when I go to view it. After all, I'd probably regret it if I was stuck here with those 14 stairs to my bedroom, laundry room and TOILET for any longer than necessary!

Oh, and she said it would be ready for December 1st, but if I'd rather wait until after the holidays, I could move for January. Um, January is usually pretty dark, wet, and windy so I think I'll go for November!

Now I'm just sitting here, waiting for her to call back confirming the units actual # of levels! Silly people! Well, I think sometimes things are meant to be. If this is, it will come back as a 1 level... and they've already OKed doing lino not carpet; how can I say no?!

OH again! This building also allows a pet CAT to be kept! Boy Child is going to FREAK OUT - he wants a cat (or dog, he's not too picky!) soooo badly. Me, too; I love cats... don't ask why this building says no cats... whatever.

Yay# 3! I called (Not-so) handyDART yesterday, wondering why I hadn't heard back from them in 3.5 weeks when they said 2. They found my doctor's confirmation and application, but didn't know why BC Transit hadn't approved it. Said to call back today and they hoped to have an answer for me. So I called and they asked my name. When he typed it in, he read out my address to me and said "If I have you in this system, then you're able to book a ride anytime!" Apparently they have sent off the 2 passport-sized photos they requested to BC Transit, who provide an ID (and?) pass. This also entitles me to purchase their Taxi Saver coupons, which get you 50% off taxi fares - now THAT would be HANDY!

*does a little happy computer chair dance-wiggle*

Hearing about the housing possibility has taken away that horrid feeling I had when I realized I'd slipped through some handyDART crack - this is something that's happened over and over since my injury; mistakes from doctors, paperwork gone astray, medical office assistants sending papers to the wrong place after I TOLD them where to send things, etc. etc. etc.

Now I get to wonder how I'm going to manage to pack and move... but don't worry, I've been considering this for some time now. My friend suggested a Packing Party! I'd never heard of this but she said just to invite people on over and maybe have some snacks and get everyone to pack you! Omigosh, brilliant! Hopefully the same idea will go for move out cleaning, as that's always the hardest part I find... but worth it to be in a new place!

Stay tuned for details as they break! :)

Update: Housing providers called back today; indeed, they confirmed, it IS a 1 level suite (was obvious to me when I got Ian to drive me there last night to see the outside).

It is also an end unit (more windows = Yay!), although right beside the complex playground for little ones, I'll take that over the park with dozens of dog walkers every day who can stare right into my living room...

On the other side of the playground is the laundry room building (though I have my own machines, could come in handy if there's a breakdown, heaven forbid!).

Behind my potential building to be is a cul-de-sac (dead-end road) so no traffic noise. Plus, instead of stairs, there's a ramp behind my possible unit to access that road, which could come in handy should I want to visit the Tim Horton's (coffee shops ubiquitous in Canada) or Subway for a sandwich!

I'll still be close to at least 2 good bus routes and, Ian points out, I'm only 2.5 blocks to our Denny's! Haha!

Seriously, Boy Child will still get the same bus to school, just a few stops sooner, so that's awesome. Also, we're still close to our Galloping Goose Regional Trail, great for a walk/roll/bike ride without cars and there's a brand new community centre just down the street.

This move, should we take it (will be determined next week) will put us into Victoria proper, instead of being in the Saanich municipality, so I'll change electoral ridings - which is fine by me.

Did I mention this building allows cats?! We looooove kitties here. :)

Can't wait to view the unit!

Drumming!

2008-10-19T22:11:00.000-07:00

Last year, I saw an amazing performance from a group called Amazones, a women's African drumming and dancing troupe. Wow, the energy was fabulous and I've always enjoyed the sound of drums, rising like a primal energy from the belly of the Earth. I loved that the women who performed were all different shapes, sizes and ages, too! They all especially seemed to be having SUCH FUN.

I knew there was a local teacher who holds classes for drumming but it wasn't something that sparked my interest at the time (mostly because I had other things weighing heavily like oh, say, a diagnosis).

Anyway, recently friend of mine - who was at the Amazones' perfomance but it was before I had met her - told me that one of the performers, Afia Walking Tree, would be in town holding some workshops and was interested in having a womens' only class as she especially enjoys teaching women. Excited I didn't need my own drum, I signed up.

Well, tonight was the workshop and yay, was it fun! It was a bit harder than I thought it would be, then again, I didn't imagine we would end up playing the seemingly complicated rhythms that we did! Since we were using djembe, I wondered if it would bother my CRPS to hold this drum between my knees (although it was resting on the floor, my knees just steadied it). When I started whacking on the drum, I noticed immediately that the vibrations went right through my leg (it didn't hurt, though). Determined to ignore the usual pain as best I could and learn, I tried hard to focus on learning the rhythms. After much drumming, my leg was rather tingly - but not in the usual pain-filled CRPS way. More like tingling with circulation, as if I'd just had a really good scrubbing massage, but without the direct skin contact, if that makes sense. But good!

I am surprised to find that, other than an uncomfortable chair I was sitting on, the tingling vibrations seemed to feel pretty good; in fact, I'd even venture so far as to say it offered a kind of pain relief in that the tingling was more noticeable than the usual stuff! YAY! I can't wait to see how my leg feels tomorrow.

Now, I've gotta find me one of those drums for supercheap or free (never know if you don't put it out there) so I can practice me some drummin'! I'm sure my neighbours will LOVE ME. (Actually, one of my neighbours drums! They are a First Nations family and I have heard them drumming and singing before. I liked it!).

I can always go to the park behind my house to avoid those dang neighbours... or maybe I can get a good tambourine to play on as though it was a drum? But then I wouldn't be getting those vibrations... hmm. Might just have to look into taking some more classes with the regular local group! Fun! Definitely something I need to find more of for myself on a regular basis.

Next on the fun itinerary: visiting my friend and her 2 week old son sometime this week. Aaah, baby as pain relief/distraction. :)

More bits of good news overshadowed by the suckass events surrounding me

2008-10-16T20:47:00.000-07:00

The OT (occupational therapist) returned today. With her, she brought me a small piece of memory foam to see if it helped make me more comfortable (it does). She also had drafts of 3 letters of support: 1 each for my housing provider and BC Housing (I live in government subsidized housing for families - a major thing in a city with >1% vacancy and one of the highest priced housing markets in the country) to request moving from my current townhouse (read: STAIRS) to an apartment without stairs and a 3rd letter requesting that they have my towel racks in the bathroom replaced with grab bars for safety (can't put them in my tub because it has one of these fibreglass one-piece surrounds).

She has already requested my own bath bench (I've borrowed one from the Red Cross), a toilet raiser with handles for stability and a bedsheet cradle (keeps the sheets off my foot as even one light bedsheet is too much pressure on my CRPS leg).

OMG, I think I love this woman who I've met twice! After struggling so long, it just seems amazing to get so many things on the move at once! Also, she is requesting a mobility scooter for me; it might be a bit of a fight, she said, as the gov't doesn't like those big ticket things and priority goes to those who are non-ambulatory. Since I can walk a little, I guess it's tough luck for me? But she said we would build my case, including that I've great difficulty getting to and from the freakin' doctor, I'm volunteering and wish to return to work, etc. Yay, OT lady!

Hopefully her letters of support help move me up the waitlist to move into an apartment. It's been over 2.5 years of my often crawling up and down my 14 stairs every time I need to pee. The laundry room is also upstairs (kinda annoying) so I can either stay upstairs and not be near the kitchen or front door or I can be downstairs, far from the bathroom and laundry room. Sucks. I didn't request to move sooner, of course, as I thought I was going to get better. Who knew?!

Still waiting to hear if/when my doctor will be able to finagle special authority for my expensive nerve medication, Lyrica. Since I bought a partial prescription with money I don't have yet again, I'm super-stressed about affording to, say, buy groceries and pay my hydro bill. In literature about CRPS, I notice they say it's important to avoid stress, etc. as this can exacerbate the condition. Ahem. Apparently someone should tell this to WCB so those FUCKERS will pay for my $300/mo.+ in Rx costs! GAAAAAH.

It's pretty hard to remain calm and Zen-like when you're so far in the negative in your finances that you can't figure out how you'll get out and it keeps getting worse. I guess I could NOT buy those Rxes and just... what, catch on FIRE from the hideous burning and being-electrocuted feelings that CRPS means?! I've tried this before it was as bad as it is now; I was going insane from sheer agony and lack of sleep.

Those aforementioned positives seem rather insignificant when I have a very negative bank balance...

Please, oh, please tribunal give me some justice and make those WCB jerks pay back all the Rx money they should have been covering for me all along...

This should probably be another whole post, but I've been feeling pretty down lately and am trying to stay positive, but sheesh, is it hard to do with this over my head.

To top it all off, I had to call the police again the other night as I feared my psycho neighbour was hitting her teenage kid. This has been going on since I've lived here (5 years). I've called child protective services and nothing seemed to come of it. So I began calling the police when the verbal turned noisy and I feared it was physical. She decided this time it was me (the cops have been here before NOT called by me) and came to my door (which I didn't answer) and yelled that I'd better never bother calling the cops on her again. To which I called the police right back again and told them. They talked to her and said she was warned to leave me alone. Then, in the morning (with little sleep from the stress) I called the property managers to complain. I only hadn't involved them before as I feared if they were evicted, the stress might make her worse. I hope that kid just gets the hell out soon and runs far. I feel so bad for him. Why the FUCK didn't the ministry responsible for this DO anything? Probably the kid denied things were bad and because he's of a certain age, they listen. And because that's what abused people tend to do is defend the abuser.

My home, which I very much appreciate having (over 2000 families are waiting in our region for family housing. Average waiting times are 2 years+ for a space as very few new buildings are ever funded to be built) as the rent is geared to your income - about 30% . In Greater Victoria, it's quite common for people to be paying 50-80% of their income toward housing and it's not uncommon for a plain 1 bedroom to be well over $750 per month. Again I mention there's a less than 1% vacancy rate. Even if you're bad a math, you can probably catch my drift here.

SO, here it sit, feeling like a prisoner in my own home; unable to navigate my stairs most days - at least without a lot of time and more pain - worried about the nutter next door seeking revenge (the thing to do with these types of thinkers is for HER to call child protective services on ME to make some trumped-up complaint), wondering how I'm to dig myself out of this financial hole I find myself in. The bottom has gotten a lot deeper since I stopped working and the top is disappearing from view.

I'm scared. And sad. And sorry I don't have more cheerful things to write about here, but I just have to get this all out somehow.

Something has to give. My scooter (regular motorcycle kind) insurance runs out this weekend and I've not had any serious interest in it. I NEED to sell it and can't stand to think of selling far below it's worth just to get something NOW.

Have I ever mentioned that I was a union member when I was injured and that, although they are supposed to, they never helped me with this case at all?! Not some little union, the largest in BC - BCGEU, the BC Government and Service Employees Union. Yup, they have something like 35,000 members province wide, but I'm too fucking small and worthless to stoop to help. Further, there was another serious issue at my work which impacted me hugely around the time of my injury which they know full well about and refused to provide legal help with. I've not written about it here because it is still so painful and ugly to write about... perhaps one day I will. Suffice it to say that, through no fault of my own, my former job almost cost me my life and it would have been at my own hands. It was that bad. I can't say more right now but it tears me up inside to know that those pieces of shit took my dues every fucking paycheque and when the going got tough, they decided (I presume) that my case was to 'iffy' or something and chose to not help. Told me to get over it. One issue has disabled me, the other just broke my heart and almost cost me my mind and life.

Niiiiice.

So when my friend, Elizabeth, complains about the gov't of BC being soulless minions of Satan (she's right), know it's also the BCGEU, a union supposedly there to protect and represent workers' rights.

Is there no justice in the world anymore? If there is, please tell me as I'd like to move there.

Being Thankful

2008-10-13T23:54:00.000-07:00

Here in Canada we have been celebrating our Thanksgiving holiday today. I had a nice dinner with my best friend, Ian, and son (here referred to as Boy Child) yesterday at Ian's family's home, where he is housesitting as they are on vacation. It's a multi-level split house, but is actually easier to manage a few stairs here and there rather than the full flight I must face to use my own loo.

It was a very good meal, I'm told (I can't comment on the turkey); I made a turkey breast roast (for them; I'm veggie) with the mashies, stuffing (dressing, if you prefer), gravy and cranberry sauce, which was canned this time since I had to cut some corners for time standing. (I sat on a wheeled office chair much of the time, since the kitchen was quite a good size, allowing me to accomplish more in the kitchen than I can at home). Yum, I love stuffing and mashies, such comfort food.

We were also looking after Ian's family puppy (actually, she's 15!) again, and I stayed with her when Ian got called into work (he's an IT guy for the provincial gov't and makes sure everyone's servers are running, etc. etc) last night due to the surprise power outage on the south of Vancouver Island, which doesn't usually affect us here in Victoria... oddly, there was no windstorm preceeding this outage! Huh! I am grateful I'd just finished almost all the cooking when the power went Pooft! (Well, except for my marinated tofu steaks, but I managed by stuffing myself with stuffing, lol!).

Anyway, we lazed about today, eating leftovers and watching a movie. It was nice to just... hang out. It's especially nice for me as I've been battling these feelings of being really alone, even when I'm not. Those feelings of anger and sadness I try to keep inside are quite isolating; poor Ian is the one who hears them, as he's closest to me.

Perhaps people will think I'm feeling sorry for myself and should just 'get over it' and they're probably at least partially correct. But if they know how to do this, please let me know. I do not. So I write here about what's going on, about how I can't afford the medications that allow me to function, still in pain, but able to manage if sometimes just barely. Many people say they can't afford things, but here I really mean if I fill this prescription, I won't have money for food for myself and son, who is more important than me.

Why is this happening? What the FUCK happened to our healthcare that this medication, it's cheaper cousin having failed for me, is not even partly covered by my healthcare or disability benefits? I am just trying to hold on for the tribunal to (pray) force WCB to reimburse me all those many prescriptiptions, worth surely thousands of dollars by now (I've kept them all!). If I'm 'lucky' I will get a decision earlier than the end of January when their deadline is... please, please tribunal think carefully and decide fairly and soon!

Anyway, I was talking about being thankful. I'm thankful for Ian, as without him I'm not sure I'd have made it through this thus far. I'm thankful as always for my son, a special guy if ever there was one. I'm thankful for my lovely friend, Mark, who took me for brunch at one of my favourite places here on Sunday, ReBar, where we had some lovely, wholesome, delicious food, great and honest conversation and some much appreciated laughs.

I'm thankful for the friends I have; although perhaps few, they are each outstanding people in very wonderful ways.

I'm thankful that I still have the use of my arms and my voice, so that I might write here, research on the computer, hug my son and hold my friend's newborn baby boy close. I'm especially thankful for my body and am focusing on feeling this, despite the feelings of anger and disconnect I sometimes feel with this horribly painful left leg of mine. It is still attached and looks healthy and mostly normal. I can not only hope someday for a cure for CRPS but to be one of the few cases where a spontaneous remission seems to occur. Until either of these happen, I want to keep my leg as strong and healthy as possible.

I am thankful I have the ability to learn and to use the learning to help myself and others. I am thankful that I've a warm and safe roof over my (and son's) head, a comfortable bed to sleep in at night and have healthy food in my fridge (usually). I am thankful I was able to apply for disability benefits provincially and have them approved without appeal. Despite their shortcomings, it means I at least have my rent paid, most of my bills and medical premiums (if not the non-covered medications I need).

I am thankful that against considerable odds, not only was I able to find a new doctor almost 2 years ago, but I found one that already knew about CRPS before I was diagnosed - an uncommon disorder that many doctors know nothing about and, therefore, are often disinclined to believe their patient's reports of such severe pain from a possibly normal looking limb, etc.

I am thankful, too, that despite the pain and suffering involved, that I have been able to learn so, so much about dis/ability and it's many related issues from a more personal perspective and continue to do so every day. I promise to use this knowledge to help others to the best of my abilities.

I am grateful to have found some new friends online, both through their blogs and this new one of my own. This connection with others, across great distances at times - whether New Zealand, New Jersey, Great Britain or close by in Vancouver or Victoria, BC - has been the light which helps keep me going when things start to feel kinda dark. A candle loses nothing of it's flame by lighting another candle.

Heaps of gratitude to each of you who not only read, but take the time to comment on my thoughts and ramblings; each new comment feels like such an honour to me.

Thank you, thank you, thank you.

Lest I begin to think things are looking too 'up'...

2008-10-10T01:04:00.000-07:00

I got a phone call that burst that bubble yesterday afternoon.

My doctor's assistant called with news on the Lyrica special authority request they had been working on for me; it has been denied, despite the reason for the SA being 'treatment failure' of the only other similar drug - which didn't seem to help me at all.

Great. I'm down just a few pills, but it's only a day's worth (they are half my usual dose, so need 2, twice per day). Thursday evening, I took just 1 pill (i.e. half dose) hoping to stretch them out. Right.

Not long ago I tried the 'old' med once more (gabapentin) once more. I believe I lasted 2.5 days before I was shrieking in pain and willing to pay the steep drug cost for some relief.

My doc's assistant was surprised, said usually 'treatment failure' is the most likely reason for approval and she wasn't sure what else to suggest. They don't even have any samples for me. Apparently can't keep them in stock and she guessed situations like mine are why.

I've gone into more debt just to get these damn Rxes. I really, really have nothing left; am still trying to sell my (motorcycle) scooter... the Lyrica will cost $160Cdn, but it is a LOT right now.

Doc's assistant was going to talk to doc about it after her appointments and let me know what she says. Perhaps they can petition the drug rep like they did for my Zytram? I can only hope and pray...

So much for 'Fair' Pharmacare (BC provincial prescription coverage). Fair my lily-white ASS!!!

Baby as pain control & an OT visit! (and a few fun links)

2008-10-09T13:14:00.000-07:00

First things first! Yesterday I got to meet my dear friend's new little guy. He was born on Saturday, a week and a half late - poor mom! When I arrived at her house, the midwife was there, so got to chat a bit while mom nursed the little (not so little - 9lbs 4oz!) tyke.

After the midwife left and her hubby went out for a while, I got to have some girl chat, get all the minute details of the birth (long, difficult and induced...) and hold the baby! Yay. I sat on a comfy chair and she passed him to me and ohhh, is he precious! Mom, happy to putter a bit, let me hold and soothe him. He fussed a bit but had just been fed, so I let him suck on my (freshly washed) pinky as I remember doing with my son many years ago. He seemed to like that and settled in, snuggling up to me, just checking me out for a while as I crooned silly baby things to him, like asking if he remembered me talking to him in Mom's tummy and patting him hello... lol.

I followed mom into her room where she wanted to sort baby clothes (all those gifts!) and sat on her bed and chatted with her. While we had girl chat, little darlin' babe fell asleep in my arms, happy as anything! I was SO enjoying his soft baby skin and that irreproducable baby smell. Mom was very surprised and said he hadn't done that for anyone in his 4 day old life, even for dad (who was still a little nervous with fussing baby). I felt SO proud that I still had some 'mom skillz', not just that I came at the right time... I like to think it was mostly me!

I told mom that I was going to need to visit a LOT because I was so happily distracted, I wansn't really feeling any pain! In fact, after a while, mom thought she should wake him to nurse and then they would both nap, since she really needed to rest, too. We couldn' t get him to wake up! We took him outside, which was gorgeous and sunny, but the traffic on the busy street didn't faze him (usually makes babies sleep better!). I suggested changing him, so we did (group effort). He cried a bit, but never actually woke up! Finally, he opened his eyes and we looked at each other while I talked to him some more.

I got mom her snack and a big drink and left them to nurse and nap together. Leaving her house, I felt high as a kite - just from the pleasure of seeing my lovely friend in her new-mommy glow and holding her precious little guy for that time, still proud I'd helped him nap so well! That glow took me to the bus and into dinner time, where I couldn't stop talking with my other friend, Ian, and Boy Child (we went out for dinner, yay!). In fact, I couldn't shut up about it! But again, holding that baby was better pain relief for the two or so hours I was there than the nasty narcotics I have been prescribed! Intersting how the brain works! Fascinating, really. Makes me think that the self-hypnosis/meditation for pain I've been looking into has some real potential.

Now, for today! The OT came at 11 and she told me about what she does. We talked for a while about my condition and what it means for me in day to day life. She was really attentive and her hearing impairment was not at all a barrier for communication, as we both expected. I showed her my bed and how I have to kick the sheets off because even the weight of a single, simple sheet is incredibly painful. So, she's requesting this cool frame that lifts the sheets and blankets, making a little foot tent! I'd seen something like this in a hospital, but this looked more simple, modern and moveable!

Next, I showed her my bathroom, the worst 'offender'. I have a bath transfer bench like this, which I borrowed from the Red Cross - borrowed, as in must give back. I've only had this for a month, so bathing for the last 2+ years was a hellish and, usually, very, very brief thing for me. Since I love baths and showers, at least I can now soak and scrub to my heart's content - or my hot water tank's limits!

Also, she said she could request my towel bars by the tub be changed into grab bars for safety which is neat, because she said I can still use them for towels, but they would be strong enough to hold onto.

Next, we talked about the toilet. Now, I don't usually have trouble getting up from a seated position but the potty is tricky. For one thing, it is low; for another, it is hard. We talked about seat risers and padded seats. The padded seat, they will not fund (but I can get one fairly cheap). There are also great handrails that can be installed for getting up and down, so we discussed the various options which would work for me.

We talked about the cane I've been using, how it helps some but still has me leaning as I favour my always-sore CRPS leg. I explained how I've developed hip/lower back pain but I believe it's only due to the 2.5 years of limping/leaning. She asked if I would consider a walker as it would allow me to not lean. I said I would try it for sure and that I guessed it was 'vanity' that made me think walker?! ME?! But she was very sensitive about it and said she realized that many people felt this way and it was, of course, up to me. I agreed to try one from the Red Cross to see how it worked for me. I said I would just have to get over whatever weird feelings I have about a walker as, if it helps, then it's better than sitting in furious pain and not doing anything. Plus, they tend to come with seats, which would be great for stopping to rest when I'm extra sore, etc.

Finally, we talked about my request for a scooter. She warned me that it will be harder to get funding for it because their (provincial ministry) priority goes to people who aren't walking at all, but that we would still try our/her best. Also, because I live at the bottom of a short but fairly steep hill, that will be a factor as it's a real barrier to navigate it. In fact, I need to go up it to catch 2 of the 3 bus routes nearby and by the time I get up it I'm ready to go back home from the pain.

She also said there's the option of a power wheelchair vs. a scooter. I said there seemed to be some pros and cons for both as I understand that the power chairs are much more maneuverable but the scooter offers the protection of the tiller (steering column) for my leg(s), which I can definitely see being important for me.

She filled out some requisition forms for the bath and bed frame stuff and for Red Cross to borrow a walker to trial. She asked me to further consider the power chair vs. scooter and we made and appointment for next week to talk more. She's also bringing me a piece of memory foam for the knee wedge I already have as it's foam is quite firm and uncomfortable on my CRPS leg. She said when she returned, she had a sample piece of memory foam for me to try.

OMG, I was by turns elated that she was here - FINALLY, someone is helping me figure out how to manage things day to day at home! - and a little sadness (pondering using a walker seemed weirder than a wheelchair. Odd, eh?) as it hit home how many things I could have around to help me, but haven't had. Also, there was a little of that surrealism - here's me, talking about tub chairs, potty-raising seats, power chairs vs. mobility scooters, etc., etc. When did this become my life?!

I think that's about expectations, in the end. When I was able-bodied, I guess I naturally assumed I would always be - at least until I was considerably older. Ah, the ignorance and arrogance of this thinking! But of course, it's easy to think of other as in, that's not me, that's some other person. One rarely stops to think that there, for the grace of god (or whomever/whatever you believe in) go I.

Yet it happens every day. Every single day, people develop degenerative and painful diseases. Every single day, people are seriously injured in car accidents, too. We often hear about accidents/drinking and driving killing people, and the sure do. And what about the legions of people who don't die, but who have their lives forever changed in an instant, finding themselves reliant on wheelchairs, power chairs, walkers. Needing help with toileting, bathing, eating. Things we all blissfully take for granted until it's taken away.

When I worked with people with developmental (and often physical) disabilities, I did often consider just how they did feel having someone assist them with toileting, eating, etc. I always made it my priority to reassure them that my helping them was not distasteful to me (it wasn't) and I tried very hard to make the process as dignified as possible for all. I was told by my supervisors that I was very good at this, very respectful, and the clients showed their appreciation, too. I believe in taking pride in my work, in doing a job to the best of my abilities. Dealing with people is one of my strengths and I am proud of the job I was doing at the time of my injury.

I'm thinking a couple of things here; 1) that I'm painfully aware now just how UNaware most other people are, and that my (even pre-injury) focus on respect for persons with disabilities/any difference is NOT by anymeans the norm. How sad and pathetic. 2) that the people I worked with (excepting perhaps an acquired brain injury or two) were born with their disabilities, therefore this was their 'normal'. I apologize profusely right now if I'm thinking as an ablist here. It is only my ignorance and I certainly mean no insult to anyone and would welcome correction - politely, please; I'm trying!

I mean, I've never thought differently or less of anyone who uses mobility aids, non-verbal communication, etc. etc. but I KNOW that other people DO. And that suddenly gave me a twinge of feeling awkward and I guess it's just the less than admirable thought 'what will people think'? Well, fuck 'em. Most people are jerks anyway, who cares what they think?! Am I more vain than I thought because I'd like to be thought of as attractive to the right person eventually and, well, mobility aids are often NOT very sexy. Let's be honest. Except these people. Dayumn, would I love one of those sweet rides! Yeeeaaah! Finally a company that realizes people are fun and funky AND wheelchair users, all at the same time! RIGHT ON!

Am I wrong in thinking the adjustment is more difficult for someone who becomes disabled as an adult versus someone who has always lived with a disabling condition? I don't mean to suggest it's easier to live one's life, simply a different process, I suppose.

A memory springs to mind of a lovely former client who used a power chair and computer talker. As she required PC (personal care - toileting assistance), one of the early times I assisted her (always with a partner for carers' safety - too bad I was injured anyway, but that's another story) she indicated that she was embarrassed that I might find her bodily functions distasteful. I assured her that is was perfectly normal and that it was my pleasure to assist her - and it was. When she realized I was honestly happy to help, she was SO grateful, she'd lean over and rub my arm with her hand in thanks. She would beam at us and, using her limited ability to use sign language, the other carer and I would joke with her, making the necessary process full of laughter for us all.

And you know what? I thought going into the job that I did NOT want to be 'wiping bums' (and it wasn't often my job to do so) but I found out that being a part of the client's life, helping them, was not only fun, but it was incredibly rewarding and fulfilling. And in life, well, Everyone Poops!

Was it easier for her than it would be were I the one that required toileting assitance? She was 'used' to it, yet she still expressed some embarrassment that I might be disgusted or offended by her body's natural functions. Clearly she had the knowledge that urine and feces were something of embarrassment to most people and was concerned for MY comfort.

Anyhoo, I've digressed as usual, but was reflecting on redefining 'normal', mobility, mortality/the frailty of humans and on the general atmosphere of ablism that our society breeds (along with, of course, sexism, racism, homophobia and other general bias based on ignorance and fear).

Feel free to leave your thoughts. :)

Still here and some more good news :)

2008-10-07T11:13:00.000-07:00

And nope, the power stayed on where I live (but across the street is sometimes another story!).

Still trying to get ready for the OT visit on Thursday; had help with cleaning and decluttering the laundry room (and therefor other rooms) on Sunday. It's just so frustrating when I can only do little bits here and there - even when I'm 'on a roll'. Gah, I just want to get it all done and I'm not even a clean freak, just frustrated from 2.5 years of letting things slide, thinking I'd be getting better. Hmmph.

Also, I have good news about at least one of my medications. My doctor was working to try and get me Special Authority (with provincial medical coverage) to cover my rather pricey medications. Apparently one of them will never 'fly' because there are just too many other opiate-type drugs (which are all more adddicting, they say) which are cheap to use instead. News flash: provincial government encourages potential addiction in medically supervised patients to save money!

BUT, they are still working on the other (non-opiate, nerve med) coverage, which is what I'm about to be totally out of. Which is also very expensive.

So my doctor spoke to the drug rep for the company which makes this atypical-opiate which is supposed to be much less likely to incur addiction issues, explaining my situation (and hope that this will be covered by WCB - worker's comp - when the tribunal decides in the new year). Now this drug company currently has coupons for a free month's prescription for these medications, but after having been given a couple (!) by my doctors, I wasn't about to expect that I could keep using them (intended for trial use).

BUT again, the drug rep gave my doctor 6 coupons (will last me through new year and, pray, the WCATribunal's decision!) for the meds, i.e. 6 months! Apparently they aren't tracking who is using them and that, if I have any trouble filling the Rx, to have the pharmacy call my doc directly and she will speak with them!

OMGoddess, I Looooooovvvvee my doctor! I'm SO lucky to have found her after wanting a new doc for years... and in this city, it's a miracle to find a new doctor at ALL, let alone one who will work with you. AND what are the chances of my finding one who ALREADY KNEW about CRPS and just how terrible it is?! MAGIC! Meant to be!

If I can just keep with these little bits of good news, surely I'll be doing well.

Holy crap is it ever...

2008-10-07T02:27:00.001-07:00

WINDY! Usually I happily sleep right through thi sort of thing, but the wind is causing quite a ruckus tonight!

I am typing this entry ever so slowly from the tiny tablet computer my friend Ian loaned me! I am lying in my bed, ha ha!

Wonder if the power will go out?

Storms are kinda exciting, eh?!

Good news update!

2008-10-01T22:34:00.000-07:00

I received an interesting call this afternoon unlike any other I have had before. It said Telus on the call display so my son thought telemarketers were at hand (had I seen the display, I might have wondered).

Anyway, it was the relay service that people who use TTY machines for phone conversations with non-TTY users. The caller was the OT assigned to me; she has a hearing impairment. This might sound stupid to say but my thought was 'cool!'. Anyway, she mentioned that she does have some hearing and we probably wouldn't have trouble in person but that it's hard to hear on a phone (which I knew, just never used this service before).

She will be coming a week tomorrow, will spend an hour or so going over (it's hard to recall exactly as it's not quite the same listening to the inflectionless delievery of the phone service operator, lol) my daily routine (like I have one), bathing issues and disscussing my request for a scooter and stuff around that. Sounds good to me.

I'm looking forward to meeting her. Since I wasn't speaking to her directly, I don't have a sense of what kind of person she is at all, which will make it odd when she comes to my home to see how I've been living... er, well, barely managing is more like it.

It feels exciting to possibly have one of those larger hurdles/hurry up and waits becoming productive!

More! More action! C'mon, worker's comp tribunal! You read that case, read it well, please!

Also, I heard from the family maintenance worker who has been working (strangely enough) on trying to get me more child support from my ex/Boy Child's father/sperm donor (one of the few really good things about getting any gov't benefits is that they will take over your child support file to get you more money, using their people and their resources, including people tracing and the courts, if necessary!). Looks like I'll be getting even more than I expected, which is great!

Since I've been scraping by/sliding behind on disability benefits, it doesn't make a difference as that is 'unearned income' and therefore subject to complete reduction off my benefits. However, since I certainly do not want to sit around and do nothing once I've gotten these messes sorted out, it will make a wonderful difference if I return to work - or worse case scenario and I end up needing to apply for CPP benefits (they seem to want you to never be able to work, at all, ever again).

Yay for even the smaller positive movements!

MedicAlert Canada: also idiots & How to answer the question: what are you doing now?

2008-10-01T12:31:00.000-07:00

If you read my post about my MedicAlert bracelet before, you'll know that although I was assured that they had ordered me the current equivalent of my former bracelet, mine arrived with a tiny plaque, a huge chain and the clasp in the wrong place.

After speaking with them about this, their response was 'oh, well, our products have changed since you ordered yours years ago.' Yes, I know! That's why the agent told me this was the same size, etc. as my old one!

Also, I note the engraving is off centre. My guess: they mistakenly put a small blank plaque in as if this engraving was on the correct, regular sized plaque (not the 'petite' model) I do believe it would be perfectly centred!

So, today I got my bracelet back, after mailing it to them (at my cost, luckily cheap) with an instructional note as they suggested. They replaced the chain, relocated the clasp... and sent back the exact same petite plaque! Um, in case it's hard to tell by my picture, I'm not a petite woman!

I'm so tired of feeling like I have to fight for everything; a seat on the bus, the 'right' to take the specialized disabled door-to-door bus service, having WCB recognise that my disabling nerve disorder/disease IS their problem, getting my kid the proper dental treatment he needs instead of telling him 'no anesthetic for you! we're too poor!'. OH, the frustration!!!

In the case of the bracelet, I have to wonder if it's worth my stress to once again tell them this is NOT what I was told I was getting, that THEY messed up, charged me more for it and now, have not completed the corrections as instructed. I mean, the bracelet at least SAYS the right things (that, in case of emergency surgery, to perform a nerve block on my left leg to prevent the possible spread of my CRPS. Also, no penicillin!).

And I wonder why I'm always so tired! Could it be because every single day it seems there's yet another hurdle for me to jump, gimpie leg and all?! I feel like a salmon swimming upstream against the swift currents of autumn... like I must continue the struggle, even if I die trying. Must... reach... end!

I guess I'm just bitching and complaining here. I kinda do a lot of that lately but seriously, if I don't let it out somehow, it'll just eat me up inside. That is bad for me.

You wouldn't know it, but I've long tried to stay a positive sort of person, believing that the right or good will win out. Honestly, since having to deal with my injury and subsequent disability, the only thing that has gone smoothly was my application for provincial disability benefits, which was approved the first time out without having to go through any appeals, etc. etc! The crappy part of that would be that I had to dig myself further into debt paying for my meds and working myself sick trying to provide for myself and my son to get there.

Where am I going with this? I'm not sure. Oh, wait, maybe...

The other day, I asked my friend's husband (a dear, sweet, gentle man) if he was working as their firstborn was due any moment. Since his trade work can be somewhat intermittent, he sometimes has 'breaks' from work. I'm getting to the question everyone asks: What do you do? or Where are you working now? I've had a well-meaning friend jump in and say I was looking for work as she saw me hesitate over my answer to this.

I've come to a new answer to this question (but note here that the hubby mentioned above managed to ask me the following question without making me feel like a loser): "What are you doing/where are you working now?"

My answer: I'm working part-time as a case manager for persons with disabilities. (Well, technically, person, singular!).

Seems to me that often case managers are the ones to coordinate getting services, etc. for people. I don't have one, so I'm doing this all myself. Combined with my other job of being a full-time mom (no job more full-time than parenting!), I'm actually fairly busy! There's always SOMEthing to call someone about, follow-up on, research, look into, etc, etc...

Unfortunately, this job pays crap, the benefits are pretty lame, too and I don't seem to be able to find any info about getting a vacation! What was I thinking in taking this job?!

Visual on how CRPS (aka RSD) feels & gait scan

2008-09-30T12:48:00.000-07:00

http://cafechronique.ning.com/group/rsdamigos

Many times I struggle with explaining my disorder to people but often I see people glaze over in confusion or from TMI (Too Much Info). I mean, do I tell people it's the worst kind of torture?! That it often feels like my foot and lower leg has been badly burnt and with a freakin' nail stabbed into my foot at the toes... plus the erratic sensations of being stuck as if with pins - like a human pincushion! It sounds hideous and it IS. I can only be thankful mine is not more widespread as I really don't think I could go on. My heart hurts so much for those who suffer as I do, and more.

Anyway, my point was that this is a really great visual explanation for those who wonder what CRPS feels like. It is not pretty.

As for what I've been doing the last few days, I have become concerned with my muscles wasting on the CRPS leg from lack of use for the last 2.5 years. Sure, early on I was walking (limping badly, usually) but as things apparently progressed, my body has had to compensate.

According to a gait scan (nifty computerized flat pad connected to a computer with specialized program: you walk across the pad several times using one foot then the other. The comp tracks how/where your foot strikes the ground and how much pressure is at each point. Gives nifty pictures and graphs, too!) most of my weight is on my 'good' leg. Duh, I could have said that - and did. I can FEEL it! Ideally, each of our legs should hold about 50% of our body weight, with approximately 25% each front and back of foot. Since I need to avoid the searing, nail-stabbing in my foot pains, I instinctively walk with almost no pressure on the right forefoot, with the weight that must land on that side hitting the heel.

As you might imagine, instead of 50% of my weight falling on the 'good' leg, I have something like 70% (can't recall exact numbers and don't have a copy of results, but you get the point) landing on my 'good' let. Guess what? That good leg often doesn't feel so good. I have been experiencing intermittent but sharp, almost shearing pains on the inside of my knee, at the kneecap. Ow. And with using the cane, on bad days I lean so much on it that I have pain in my hand and arm/shoulder! This is not like the CRPS pain (THANKFULLY) but is obviously from the strain of overuse. But what to do?!

For now, I'm trying to walk about without the cane as I'm able to exercise those muscles. It would be rather helpful if WCB would just get forced into finally helping me like they're allegedly supposed to - some physio, etc. would be quite welcome and helpful (I hope).

For now, I'm stuck in this limbo world where I'm waiting and waiting... waiting for WCAT to make their (hopefully helpful) decision, waiting for some coverage so I can attend physio, waiting for my money to come back (ohh, the hundreds and now thousands I've spent on these meds in just over a year!), waiting to be assessed by an OT for a scooter, etc.

I'm trying to be patient and find some Zen-like peace. This is VERY difficult when you're being stabbed with invisible needles and nails!

For anyone who comes across my posts here, I'd love to hear of anything you've found helpful with dealing with your pain symptoms. Please and thank you.

The frustrating event (like there's only one)

2008-09-27T21:27:00.000-07:00

So, yes. Thursday saw me meeting with the counsellor who's been assigned to me from the local community counselling agency. My hope was to find someone to do some work with about the roller coaster of feelings I experience around my 'new' life as someone with a severe chronic pain condition, which is also disabling in terms of mobility. Rather than overburden my already overburdened friends with my woes and frustrations, I hoped to both find a new set of listening, caring ears, but also to hopefully learn about potential ways to deal with the extreme anxiety and fear losing chunks of my life - or at least having it radically altered - has brought on.

I met with the woman, who turned out to be someone who worked at the alternative school I attended for a time as a teenager. Huh. Wasn't sure if I should tell her, or ask if she remembered me, so decided to chat with her a bit and see if we 'meshed'. I spent more time than I would have liked talking about my injury - which would be helpful to explain to her, but I don't think getting into a conversation about how I manage to bathe will be particularly helpful to either of us, nor did I want to get into explaining my mother and my relationship with her to this woman, including why I haven't been getting any emotional, financial or practical (hello, cleaning!) help from my mom. Sheesh. That was NOT on my list of 'why I want to work with a counsellor right now' issues!

Anyway, perhaps more on that later, but this is what just drained my energy that day.

To get to and from my counselling location, I must take two city buses, which do connect reasonably well. Despite being a 10 minute drive from my home to this location, it will take 45 minutes (or more) for me to get to or from the office. Bleh. Even still, I went to catch the bus, the stop is blessedly close at least. I wait to board the approaching bus, to realize as it nears that it is full and 'standing room only' inside. The driver opens the door and I asked if I should wait for the next. He said "Oh, no there's lots of room!" so I board. He calls out to the passengers to move toward the back, saying there's lots of room and to 'not be afraid of your neighbour', lol. People begin to shuffle and he takes off before I realize that although people have moved, no one is about to get out of the seats clearly marked 'reserved for persons with disabilities.'

I start to panic as the bus moves because, uh, I CAN'T STAND UP IN A MOVING VEHICLE! I use a cane, need to get either a wheelchair or scooter and I have poor stability and endurance at the best of times. I'm clinging to the posts for dear life, crying and feeling like an idiot - and a panicked one at that - but even more so than falling, I'm scared of the pain flare the seemingly simple act of trying to maintain my balance is likely to cause. (A really bad spot for me is the forefoot, around my toes, so the flexing one does to maintain balance will be, well, NOT good).

I can see a few passengers shooting me sympathetic glances, but even if they wanted to, no one would have been able to get up with all the standing passengers... choking back tears of embarrassment and pain, I clutch my way out the front door at the next stop, luckily less than a block away.

Totally crying now, I wipe away my tears and try to calm my pounding heart, reassuring myself that this bus comes quite often. Sure enough, just a few moments later, another comes down the street. And I'm greeted with the same overflowing bus. A similar conversation ensues, but this time I firmly state that I NEED TO SIT. The bus driver says "Oh. Well, another is coming." and he drove off.

See, BC Transit, being soulless demons from the far reaches of Hades, actually have a policy which states that when non-disabled passengers are using the seats which are clearly labelled Reserved for Persons with Disabilities, the PWD or driver can ask them to move but, if they do not move, then the person with disability is to get off the bus and await the next one!

WHAT. THE. FUCK?!

My friend figures it's to protect drivers from getting into 'confrontations' but HELLO!

So, here's Lisa, sitting at the bus stop AGAIN, awaiting the THIRD bus, hoping this time I can actually have a freakin' SEAT. Oh, and of course, during the wait after rejection #2, it starts to rain. Naturally. (Ever tried to use an umbrella while also using a cane and still have a hand free to use your bus pass? No? Try it! Superfun.).

Here comes bus #3 and yay, it looks pretty empty! Sure enough, it IS - but it's one of the OLD buses, with three enormously high stairs to navigate and then these rock hard seats without padding, which are strangely so high off the floor that my feet sort of dangle (I'm about 5'7", by the way). I'm in a lot of pain right now, not to mention my blood pressure surely isn't too healthy and I'm still crying and trying to avoid the curious glances of other riders.

Then, I get off this bus to transfer for the second part of my trip, which involves me fighting my way out the front door (people already starting to board don't seem to want to wait for me to get off, despite that it's typical for those with disabilities to disembark at the front doors). In full pain mode, I hobble to the next stop to await my transfer, which I catch without event. That is, until a mom with stroller wants to use my space for her baby stroller! Yep, these wheelchair/scooter spaces on our new buses are actually for baby strollers; apparently I didn't get that message.

By the time I get to my front door, I'm crying again/still, in a whackload of pain and can't even answer my son, who cheerily called out as he was approaching our front door at the same time.

My friend also arrives and is trying to offer suggestions of what to do - especially to never give up my seat, since no one else ever does. But it's just not practical in the moment I have to swipe my bus pass in the reader, then move as quickly but carefully as possible into the first available seat, usually while the bus is lurching away from the curb and I'm about to make a huge, messy face plant due to my one-handed grasping at the grab bars not being enough to stabilize me on a moving bus. Huh.

I forgot to mention the first trip on the way out, when the 'disabled' seats were occupied not by people, but by these two passengers' huge freakin' BAGS. Yeah, BAGS.

I've come to the infuriating conclusion that people just DON'T GIVE A SHIT about anyone anymore. The only people who ever offer me their seat are senior citizens who clearly need the seats as much or more than I do! It's not even self-centred teens who pull this crap, it's often grown adults, in their 30s and 4os even who, judging by their dress, are often professional businessperson-types. No, they act as though they don't see me, looking around, away or at anything but the person who really needs a seat. THEIR seat. COLD.

I guess that's the big joke for this. I am such a low-life bum, getting provincial disability benefits (maintained by the same ministry as welfare benefits and you must be just as broke to get these) so clearly I do not deserve so much as a seat on the PUBLIC transit. Sure, it sounded good when I heard I could get an annual bus pass for less than the cost of a monthly pass. Now I see why it was such a 'deal'.

This wasn't just an isolated bad incident with the transit here; I do recall first coming across fellow Victoria resident Elizabeth and reading of her experiences with using her wheelchair on the buses.

Well, had I not 'wasted' all my money on paying for my damned medications, then perhaps I could afford to buy and run a little car or something and not have to deal with this garbage. But I'd LIKE to take the city transit, if at least for the environmental benefits. I think I understand why I don't see as many people with mobility impairments on the bus - why would anyone put up with this treatment if they had another option?!

Despite beginning a pain flare after this fiasco, I went to my volunteer shift Friday (just 3 hours and only answering the phone, so quite low key! Nice to be needed!) AND even managed to drag myself to the pool with my about to burst pregnant friend. We didn't swim, per se, but hung around in the warm therapy pool and floated/walked for a bit in the river current portion of the pool. It was so hard to make myself go and I wouldn't have had she not come to pick me up... but we went and the warm water plus being able to stand and move with the water buoying me was soothing.

You know, I really, really have to work hard to make those good things be the ones that stand out because, unless it's just me, those NOT good things are piling up rather unpleasantly. Must remember to stay positive, right? It WILL get better, right? Suddenly I'll have a superpower to blast those rude jerks out of the disabled seats on buses, people won't jostle me or drop their rock-filled (?) backpack on my lap (seriously!) on the bus and oh, YEAH, WCB will be forced by the Tribunal to a) pay me back for the thousands** I've had to spend on medications b) pay for ongoing treatments c) pay me for the lost wages when I had to leave my job and d) equip me with whatever wheeled mobility device my doctors and OT (whom I've yet to see) feel is required.

** Yep, thousands by now (in about 13 months of Rxes x $100-350 per month=LOTS). Getting this $$ back would be enough to purchase a modest but safe, wheelchair/scooter-friendly (as in will allow me to transport it) van!

YEAH. Those good things will help make the bad things less overwhelming, right?

Too Sore to Sit and Type

2008-09-26T21:40:00.000-07:00

Too angry to articulate. Too tired to see straight.

One Day at a Time

2008-09-24T18:46:00.000-07:00

Today I returned to my doctor to discuss, for the umpteenth time, medications - trying to get a regime that works for me. If we keep at it, we're bound to be successful, right?!

She's also requesting another special authority to cover Zytram, since it also seems to be better than I thought - discovered when I tried to NOT use it! Yay, for helpful GP!

Also, she kindly filled out the 'more info required' form for not-so-HandyDART - so I can take the specialized disabled-access buses when need be (i.e. bad pain flares, medication side-effects, or a specialist not on an easy bus route). I appreciate that not everyone should be allowed to use the 'Darts' but sheesh, the form they gave me was huge! Luckily my doc recognizes my horrid financial situation and didn't charge me for the form... bless her.

Then, I went to the pharmacy to get my Rx filled and spent the afternoon shopping. Yep, shopping! I walked as much as I could, getting my required exercise, before heading to a department store which offers in-store scooters for shoppers to use. It was huge and clunky and noisy, but had a huge basket on the front and allowed me to browse and wander to my heart's content!

Yep, I'm feeling the burn, but sometimes it feels so good to get out and do 'normal' things like wandering around!

Also, I scored el cheapo clearance pants at Old Navy, where they actually have very low-waisted pants that suit my very low waist... I was thinking how helpful that would be for a wheelchair user, since when sitting waistbands tend to dig into your belly. These ones are low and avoid this! I also recommend the maternity pants - yes, really! They have several styles of waists now and one type is normal-looking, but very low in front (designed to sit under mama's belly), sometimes with a soft, ribbed band. Perfect for full-time sitters!

Yep, my days this week have mostly one appointment or errand-must-do, but it seems that those single things tend to fill much of the day - or at least my energy/pain tolerance!

Let's hope I'm not sorry tomorrow, as I have yet another appointment to get to in the afternoon!

And now I wait...

2008-09-22T18:07:00.000-07:00

Last Tuesday saw my submission to the Worker's Compensation Appeals Tribunal (final appeal level and the hope for something fair!) sent off. All submissions are considered to be in and now I try to relax (ha) and WAIT. The decision is due by the end of January 2009. I'm told by my Worker's Adviser (a lawyer) that sometimes you'll get the decision early - and maybe we'll get one by the end of this year - but who knows. SO, I've got 3-4 months to chill out and hope for the best.

The best, of course, will be that worker's comp are ordered to reimburse me for the thousands of dollars I've now spent of my own money for prescriptions, etc., as well as referring me for assessment for partial disability pension - and hopefully also for figuring out lost wages (had to leave my job because of this injury) while they're at it. There is a chance that this decision will only cover some of the issues at hand and we'll have to file another claim for other issues.

AAAK. I'm going to try very hard to relax and think positive thoughts about this! In fact, I'm planning on making a 'vision board', the idea of which is to help one visualise the things you wish to bring into your life. When I was applying for disability benefits, I took a look at the sample application form and wrote down, in red felt pen, that the application was APPROVED and that it included medical covereage, etc. Well, I got approved with no appeals required, so yay!

What else am I up to? Well, tomorrow I have my 2nd training date for volunteering at TAPS (Together Against Poverty Society), a local non-profit that has both volunteer and paid advocates that assist people on low/no incomes with tenancy, disability and income assistance benefits that they might have. Needless to say, there is a huge need for their assistance, with all the massive government cutbacks in the last several years. Also, Victoria is known for having a >1% housing vacancy rate as well as one of the most expensive housing markets in the country. Not a good combo. (I've lived here almost all of my life and am from Vancouver Island where Victoria is located - it is so hard to imagine living anywhere else!).

Anyway, I've always appreciated and admired the organization and I will be an on-call front desk person for them, which should suit my needs quite well as I pursue better pain management techniques and treatments.

I had a nice visit with my friend who is due with her first baby on Thursday. She thinks the baby will be later than that, but one never knows with babies! It was good to see her and visit with a few of her friends from prenatal class. Then a dental check-up and cleaning and that was my busy day!

Hard day...

2008-09-19T20:03:00.000-07:00

I hesitate to post what I feel on days like this... hell, any day, because it is so often not 'positive' i.e. if someone asks how I feel, do I say "I REALLY hurt today" or whatever to be honest, or do I lie (which it kind of would be to ignore that overwhelming pain), put on the best smile I can manage and say "I'm well, thank you."

I'm sad today. I think I've managed to drive away someone I really wanted to become long-term friends with. She's expecting her first child very, very soon; but this summer I was at her wedding - in her wedding - and now I feel like she feels obligated to try and stay friends.

I know I'm boring as hell; the only thing that currently fills my days is managing my own case. Considering people work for the local health authority and get paid a decent wage for this, I'd like to pretend the money the government is currently providing me to almost squeak by is sort of earned. If I were doing this vor VIHA, I'd make enough money - even part time - to take care of myself and my son. I just have to get well enough and stable enough to become the helper not the helpee. What an interesting thought that is, hmm?

It didn't help that I woke up repeatedly during the night with my lower back feeling seized right up; I was unable to get comfy no matter how many pillows I rearranged under and around me. Finally, when my son was awake (no school today) I had him help me get into a very warm bath to try and soothe those muscles. It helped a bit and, with the morning medicines I tire of taking, I started to feel a little better.

But I feel bruised; my body, my mind and my heart. This hurts in so many ways. I don't want this to be my life, feeling so dependant on help from my son and last, loyal friend. I'm scared that if I start using a wheeled mobility device that people won't want to bother to spend time with me - that I'll be too much bother.

And I'm so scared; if I can't get this pain under control and stop practically faking being able to manage normally. The truth is, Ian has driven me everywhere for the last 2.5 years! Appointments of all sorts, doctors, physio (4 times a week, from across town, for months!), chiro, pharmacies, groceries, groceries and more groceries. Also, seminars (health things I thought might help me) and raw food prep classes. Because I couldn't manage the walk to/from the bus stops and would be too sore and tired to sit... And I feel so damn guilty for taking advantage of his kindess and loyalty. I just don't want to have to make people do everything for me anymore!

What do I do? It seems even with this new med (too many pills!) I'm still having a lot of pain...