veganhothead | Entries tagged with fibromyalgia

your moping table is ready.

I'm hung over from my sister's bachelorette. And more than a little hurt, angry and disappointed (and only 50% in myself).

I won't rehash. I really don't want to.

But why the hell do I continue to love people with such intensity when I only get maybe about ten percent of that back?

I'm bracing myself for a rough fall.

I'm still aching from my tragic fall the other day but at least my knee is a lovely shade of purple.

I've spent most of the weekend meditating, being stoned and watching TV. And some light stretching when I can manage it.

I gotta do something to feel pretty again. At least spring is coming so I can start breaking out my prettier clothes. I think I'll wait a month before thinking about a pedicure.

Or is it the sick?

Either way just as my boobs start to slide off the face of Earth a walk through a snowy Kensignton Market is making my knees smart. I already was having trouble with the left one. I really wished I had a cane or someone to carry me today. Must strengthen my quads.

In better news, my new bag arrived today:

http://www.calicodragonbags.com/peace-rescue-large-tote-plr12/

I have a feeling it won't be the last I get from that company.

Out of nowhere, my right eyeball hurts. The white part you can't see, it feels like it's been bruised.

Mom (who worked for an optometrist for years) advised me to take out my contacts and get an eye patch and call her ex-employer Monday if the pain doesn't stop.

The only eyepatch for sale at the drug store was not the best quality. The elastic is not adjustable and does weird things to my face like squish the flesh above my good eye. I look like Quasimodo's sister.

Finally I couldn't stand it anymore and I'm hiding out in my basement apartment in my glasses. Bah! It's cold outside anyway. I've had to waste good absinthe (which has yet to produce a single flash of genius or green fairy but I think I just drank it wrong) on feeling less like crap.

The doc started me on Cymbalta for my fibro pain. Could the eye thing be a side effect?

Also, a nerve in the palm of my hand beneath my thumb is inexplicably twitching periodically.

Shit.

Current Mood: aggravated

I can't remember how to do a cut. I apologize. Suggestions are welcome.

Hello friends,

I hope you’re all enjoying what’s left of the summer.

I’m writing to you all at once because there is something I need to address. A few of you are already aware of it but you may not have seen me or heard from me for a long time. I need you to know it’s not because I don’t like you or I don’t want to go to your fun parties or talk to you. It’s because I’ve been ill.

I have Fibromyalgia. I’ve had it for about six years but the symptoms have become really severe over the past two and I was only diagnosed last year. This was after years of trying to get doctors to listen.
I didn’t want to make this letter too long. This link explains what fibromyalgia is and what people with fibro have to deal with better than I can right now. Not everything written applies to me but most of it does. Please take a moment to read it.
http://thepathbeyond.com/blog/?p=17

I will briefly explain what this means for me personally.

I get “fibro fog,” which makes concentrating and remembering things extremely difficult. Sometimes I have trouble remembering simple words. This is very bad, especially if you’re a writer. So I can’t write like I used to.

I also can’t do yoga like I used to or do cardio kickboxing because overexertion makes my condition worse.

Being in pain all the time really saps your energy, to the point where simple chores like vacuuming or going to the doctor can wear me out. Sometimes I’m too exhausted to speak.
This makes it hard to socialize or do things like attend demonstrations. For me, this is the hardest part of fibro. I miss out on a lot of great stuff and often it’s like I have no life at all.
I don’t look sick. I look tired a lot, sometimes I can’t hide the dark circles under my eyes but otherwise fibromyalgia is what’s referred to as an “invisible illness,” which makes it hard to be taken seriously.
Since I was diagnosed I’ve been slowly learning how to navigate this illness and managing it to the best of my ability. I’ve had to stop working and go on ODSP because I simply can’t work anymore. I’m currently attending a fibro group at Toronto Rehab, which is helping me deal with things.

I’m sorry I didn’t let you all know sooner but it’s been hard to deal with and it’s even harder to explain, especially when you have trouble finding words. For a long time I was at a loss as to how to let you all know.
Please know I’m not trying to make you sad or looking for pity. I just felt that you deserved to know. It really sucks to be going through this and I’m pissed off over what I’ve lost. But it’s not contagious and it won’t kill me.
I still care about all of you and I hope someday soon there will be a magic pill to make it all go away or at least I’ll feel well enough to catch up with you.
Be well,
Lesly

You, my lj friends (sheesh, it took me a minute to remember "livejournal!) have been privy to the shit that has been going on with my health for the past five or six years. I know you get fibro and the hell I've been through.

Not everyone does, though. And some of that is because I've been cutting back on my socializing and going to demos etc. so people I used to see a lot, some minor friends, just don't know about it. It's hard to explain to those who don't understand even if they are sympathetic. It's even harder to explain over and over again, when hell half the time I barely understand.

Soooo, I got the idea of sending out a Facebook message (because it's fast and easy and just about everyone I know is there) explaining that I have this icky syndrome and that's why I've been making myself scarce and not responding to invites.

The problem is my brain is not cooperating.

So I searched online for something that might help and came across this:

http://thepathbeyond.com/blog/?p=17

I figured I'd send out the link and maybe add some of my personal experiences just to...I don't know.

What do you think?

I had my third fibro group session yesterday and we talked about sleep issues. I think I was the star of that session because I was not only able to share what I learned from my sleep study, but I was able to warn the others that they needed to go to the clinic on College st. not that one on Eglinton because the former was better and they had a lot of experience with FM and CFS. Go me!

I got that bathing suit from Helen and had my first pool therapy too. It was like being in a very large, chlorinated bath tub. The exercises were something I might have done as a warm-up to more vigorous exercise five or six years ago and I was feeling slightly winded after. But I was able to just kind of wave at that thought as it floated by. And the water felt great. I need to find a heated pool in my part of town.

Still not completely back from the dark place. Shit, every time I watch Glee or hear a song from Glee or see an image of Cory on TV all I can think is "...dead?" Wow, when they get to episode 3 where Finn gets "written out" of the show it's really going to hit me that Cory and Finn really are gone and I'll lose it. What a piece of work is Lesly.

I have an urge to listen to Leonard Cohen. Which means I'll have to dig out my CDs from storage since I never did transfer them to itunes. I guess it's been a while since I've been in a Cohen state of mind. Time to get dusty.

I got a letter from ODSP today telling me that my file has been adjudicated and I have been found to be a person with a disability under somesuch act from 1997.

This means no hearing and no more pleading my case.

Not that the fight is over yet. I still have to convince them I'm poor enough to get it, that there's no secret trust fund stashed away, but I'm not too worried about that. Just more stinkin' forms to fill out and a few months for it all to get processed.

Still, I'm thrilled that at least I'm done with the hardest part. Yay!

**

My visit to Toronto Rehab wasn't as bad as I thought, ice pellats falling from the sky aside. The doc was super nice and I'm enrolled in their summer program where I'll learn about energy conservation, relaxation memory strategies and other useful coping skills for fibromyalgia. There's also a heated pool exercise component, which sounds great. I'll need to buy a swimsuit, I guess.

I'm on my way!

I finally have my intake interview for the Toronto Fibromyalgia Rehab...thing tomorrow. Naturally, it's the coldest day of the week, complete with ice pellets falling from the sky like tiny bullets, shooting holes in my progress (I miss being a good writer) as I walk ten or fifteen minutes from the nearest bus stop after a not too pleasant or speedy commute.

I don't recall how to do a cut here so I'll just bitch, feel free to skip this part.

Who the hell builds a rehab center for people suffering from pain and EXHAUSTION out in the freakin' boonies (at least to me, I'm now a downtown girl through and through), FIVE BLOCKS away from the nearest bus stop? WE'RE BUSTING OUR FEEBLE ARSES TRYING TO FEEL BETTER AND THEY'RE MAKING IT VERY, VERY DIFFICULT! GRRRR!

And why are they making me come all the way out there for a freakin' interview? What could they have not done over the damn phone? I just may be in a foul enough mood tomorrow to ask that question.

After all the nonsense I had to go through just to get the damn referal and the intake forms, this had better be worth it.

Tomorrow's Glee had better be really good.

It was a busy weekend...for me.

On Saturday I took part in the march down Spadina for National Anti-Fur Day. I think this was the first demo I'd been to in over a year. Afterwards I lunched with Helen and Ken and Ken's expecting wife. It was pleasant considering all the hurt feelings on Helen's end.

Then on Sunday I met Rob's -ex brother-in-law along with Myles (the nephew) and Maddy (who I haven't seen in over three years). We hung out in Chinatown for Chinese New Year and eventually ended up in Kensington Market. Maddy is going through a shy and awkward phase (but in all fairness she's twelve and face it, she barely knows me anymore). Also pleasant and involved much walking through deep snow and slush.

Of course, I was in agony all Monday and I'm still not back to what I've come to know as normal.

For the good of my health, on the advice of a book I read on the advice of sleep doc, I'm phasing out caffeine, chocolate, white flour (which I more or less already have given up...in theory), aything deep fried...alcohol. Essentially, everything that was making my life tolerable.

My forehead is all broken out and I'm back to my mega-doses and vitamin C and now magnesium.

I really hope this shit starts to work soon. I really, really miss being interesting.

**

My nana is going to have to go to a home as the docs have agreed she's too sick to take care of herself. That should be an interesting battle.

Well, the dratted cold that started on the 26th has evolved from a sore throat and stuffiness thing to an avalanche of tissue and red nose to coughing and dizziness. And a tinmely visit from good ol' Aunt Flo. She could have at least brought me some soup.

This puts a real kink in my plan to read all the books the doc told me to read and do my mediatation cd every night so I can (possibly) get rid of this stupid illness in the next 2-3 years.

Ick, I've had it with these roadblocks. Don't they realize I've got shit to do?

*goes to hide under covers until spring*