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Drama- Episode Two!

DRAMA ITEM #2:

...Which, again, I've decided to excerpt from the longer entry I was working on- in my OpenOffice editor, (shaddup- I'm lazy,) it's already capped 7 pages.

Seriously- the reason for the delay posting all this isn't just that I'm busy with other stuff, or that it's kind of hard to talk about, (both true,) but mostly just that it is So. Fucking. Complicated. Even among the family members I plan to point to these posts for their furthur details aren't likely to read all of this stuff, much less remember it- but as long as I record as much detail as I can for posterity, the less I have to ruin otherwise pleasant conversations by making people's eyes glaze over and/or stomachs heave. (Though frankly, I might chicken out on linking to my actual blog and repost this somewhere a little more... sanitary... for family.)

And be warned- you ever gone to volunteer at a rest home and been cornered by the little old lady who wants to give you her complete medical history?

If the thought of that ever, EVER happening again makes you want to piss yourself, run. Run NOW.

_ _ _ _ _

First, the short version: I am, apparently, a Mutant Zebra. Which, I would like to point out, would make an AWESOME band name. (Ethan, I'm looking at YOU.)

Unfortunately, the short version is not all that informative. So, now we begin the LONG version.

-begin blurry fast-forward flash-back mode-----

Some of you may be familiar to varying extents with some of the weird joint/health stuff I've had going on for a while now. I'll go ahead and give a recap for those who aren't, but somehow still actually *want* to be- keeping it as brief as possible, given room for snarking. Mostly it's just background for apparently unrelated random crap that turns out to be related later. Feel free to skip ahead to the links at the end of this entry.

Car accident, November 01- sprained my knee, which took an unusually long time to heal- was on crutches for a little over a month. Shortly after getting off the crutches in January, had a random back spasm of epic proportions, thoroughly laid me out for two weeks with multiple torn muscles, and forced me to drop the quarter, (the combination of two of which was a catalyst for my decision that commuting to Evergreen wasn't working, and eventually dropping out.) Had trouble with tendonitis in my knee that continued after that, despite physical therapy, and spread to the other knee. Quit physical therapy- (it was freaking interminable, and expensive.) Gained weight, exercised a bunch, lost weight, found exercises that helped my knees, all returned pretty much to normal, with intermittent recurrence that I put down to needing more exercise. Bought the house. The Gallstone Saga followed in March of '04, leading to my taking a serious look at my insurance, or lack thereof, my swallowing my general anti-establishment principles, and Robert and my getting hitched.

Got a job at Jo-Ann's Fabrics, in hopes of contributing something financially, earning enough to pay tuition, and generally NOT being a total leech. (This job made me feel like total crap, by the way, for reasons which become evident later.) Tripped and sprained my foot while walking to work- (on an enormous root-raised crack in the pavement, cleverly concealed by a pile of leaves,)-(and who the hell sprains their FOOT, anyway?! Not my ANKLE, mind you- my FOOT!) Wore a boot, continued walking to work, continued working. Didn't heal. Doc told me to use crutches. This being my second time needing them, I just bought the damn things- which turned out to actually be *cheaper* than renting them, anyway. Even if I had means of getting to work on said crutches, though, Jo-Ann's Fabrics forbids sitting on the job, outside of IN the staffclosetroom, during designated ten-minute breaks.

...Yeah.

So I couldn't go to work. During this period, on my way to a different (unrelated) doctor's appointment, using the bus, on said crutches, I slipped (in the middle of the busy-ass intersection of Roosevelt and 45th, no less,)- (on some MORE of those slippery-ass wet leaves, no less. Motherfuckers were out to GET me!) and managed to sprain my knee, as well, (luckily, if you could call it that, on the same side.) This extended things past the week off Jo-Ann's was willing to give me, so I had to quit. (read- or get my ass fired.) Once more, with feeling-

...Yeah.

Anyway, while on the crutches, I started having some other weird shit- like the sprained leg going numb or tingly, and being super-pale and cold compared to the other. Doc took x-rays, said I had some "degenerative disc disease," and that somehow this combined with the crutches was messing with the nerves going to that leg, or something- the gist of which ended up being that I should stay off the crutches as much as possible, and just stay off my feet altogether until it healed. As for the degenerative disc disease, he told me to avoid heavy lifting, repetitive motion, staying on my feet for long periods, etc. (Which is what they had told me about my knees, before, too- advice which I never was good at following- especially as it had ruled out pretty much every minimum-wage job on the planet, including Jo-Ann's.)

Even after those sprains healed, joint pain in general got worse, and spread furthur. My GP (not the Sports Medicine doc I'd seen for the sprains,) recommended chiropractic and massage therapy, along with more exercise and improved diet, (which I was already doing, grrdammit.) Tried this, and it helped a little at first, though it was DAMN expensive. The chiro took more x-rays, and besides the disc degeneration, he also pointed out scoliosis (which I SWEAR I did not have before- during those school screenings, they always complimented me on how straight my back was and my good posture- which my dad went to great lengths to drill into me as a kid, grrdammit++) and "subluxations"- which I eventually came to assume was chiro-speak for "pay me lots of money." After seeing this dude for close to a year, though, rather than getting better, it was getting worse. The last nail in the coffin was a creepy Christian Scientist type newsletter thingy that he sent out- I don't want to be judgmental here, (and it kills me to say that because if I have to say it, I know I *am*,) but the last fucking thing I want to hear someone that I am *paying* as a *medical professional* espousing is *faith-healing.*

At the same time, as things continued getting worse, I took a clue from the Gallstone Saga and started looking up my symptoms on Google. (Yes, I know that this has been given its own nickname.) At one point, given my prior concerns with weight gain, along with rising joint pain and fatigue, I even got my thyroid checked. I also *finally* found out that disc degeneration was a common feature of osteoarthritis, descriptions of which certainly applied to the rest of it all, so when things got worse, I went back to the Sports Medicine doc who had brought it up in the first place. *He* didn't remember having seen me before, (something on which I should also like to rant furthur, if only for catharsis.) He did, however, decide my symptoms were worth furthur attention, especially since they were unusual for someone my age, so he ran me through some tests, but didn't come up with anything. Again, exercise, diet, physical therapy were all recommended.

I inwardly interpreted this at the time, (and outwardly later)- admittedly, defensively and hot-headedly- as a placation and dismissal. I figured that anything that got a recommendation like that must be something totally normal, and that physical-therapy was where they sent people who were basically psychosomatic, or hypochondriacs, or too lazy to exercise without supervision. I mean, I was already exercising and watching my diet to a degree verging on (if not outright) neurotic. And I figured physical therapy would be more of the same- only at $30 a pop. And after his initial reaction, which was very serious and making-a-big-deal-out-of-not-making-a-big-deal-out-of-things, I got pretty worked up. *He* was the one that equated my symptoms with such big scary shit as Lupus and RA, after all, not me. (Mind you, not incorrectly- I did have a suggestive family history and set of symptoms- but at the time, having never even considered things like that, it felt like he'd gone and scared me over nothing.)

About 6 months later, after things got to the point of seriously interfering with my ability to function normally, the combination of a few comments and some advice from friends and family, plus Googled articles about such crazy things as Undifferentiated Spondylarthropathy, led me decision that goddammit, even if it *was* doctor-shopping, or otherwise hypochondriacal and neurotic, I was making an appointment to see a rheumatologist. Luckily, my Fucking Awesome Insurance allows for self-referred visits to specialists, so I did just that.

This brings us, not to the present, but to the recent past, at least.

-end blurry fast-forward flash-back mode-----

So, after running the rheumatologist through my symptoms and medical history- a process rather like that flashback- the first thing he did was run me through the Beighton tests. This confused the hell out of me, as I had no clue that ANY of that was unusual. He took some blood tests to re-rule out the gnarly autoimmune set, (the sports medicine doc's office totally dropped the ball on forwarding my records- something that seems to happen a GODAWFUL lot-) but told me he was pretty sure I had something called Hypermobility Syndrome, and suggested I look it up in the interim before my next appointment. I did so- in my usual ridiculously exhaustive manner. (In particular, this has been a sort of coping mechanism for me- I even saw it mentioned on a site about cognitive behavioral methods of pain management. Basically, when I'm in too bad of shape to sleep or concentrate well on anything else, poking around Google gives me a distraction at the same time as at least letting me *feel* like I'm doing something active towards fixing it, rather than just sitting there passively *stuck* with it. Probably the same for hypochondriacs, the only difference being their object of avoidance or attempted control. Or, at least, that's my armchair hypothesis.)

Anyway, here's a sample of the better references I found:

Benign Hypermobility Joint Syndrome
Oxford Journal of Rheumatology Article: Time to take hypermobility seriously
Oxford Journal of Rheumatology: Living with the hypermobility syndrome
Merk Manual: Ehlers-Danlos Syndrome
EDS Network CARES- Hypermobility Type
Genetics Home Reference- Ehlers-Danlos Syndrome
GeneReviews: Ehlers-Danlos Syndrome, Hypermobility Type
Ehlers-Danlos.org: Reposted Article from SEN