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

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

... 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

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

... 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

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...

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!

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!!!