31 July, 2008

no. 18: my brain, and a hiatus

So, I may or may not have alluded to this in the past while, but I've, um, been going through some adventures lately. Lately... whatever, it started in November, with a somewhat alarmed assistant optometrist at my yearly check-up. Followed by a follow-up visit in January, a pass-the-baton relay visit to an opthamologist (with really lovely eyes, thankfully, considering how long he stared into mine...), a CT scan, a further pass-the-baton relay step to visit a neurologist, a lumbar puncture, and finally diagnosis. I have a neurological disorder called Idiopathic Intracranial Hypertension (IIH for short, because no one wants to have to say all of that all the time... I say it because I'm a nerd).

According to the scant information I can find, it is a "disease of the overweight" ... seeing as it tends to afflict overweight people (primarily women of reproductive age) more often than people of 'normal' weight. BUT it doesn't necessarily go away with weight loss. Um, oh, right, odds... so, rates of incidence are on the rise, but really, when you have a less than 20 in 100 000 chance of getting something, odds are you usually don't. Unless you're me... Who developed the hairy fruit and veg allergies? Who got an inguinal hernia... as a woman? ... me... unlikely, rare afflictions... yay! what else can I get? Even Multiple Sclerosis is more common than this.

It often goes away all on its own, sometimes with weight loss, sometimes just because. Sometimes it sticks around for many many many years. Sometimes it goes into remission and comes back and goes away and comes back... like Canadian Snowbirds visiting Florida for the winter.

I've found an informative, if British, website: www.iih.org.uk, which is also affiliated with a support group that I am joining. So far just lurking has been enlightening. Perhaps not encouraging, but reassuring at the very least. And it's nice to know that my current dosage of medication (1000mg) is nothing near the upper limit some people are taking... and I'm reassured by the performance of the drugs at this level.

For those of you hoping for the briefest of synopses, IIH is an elevation of the fluid pressure in your brain. The symptoms, from what I understand, are not unlike altitude sickness, and the meds are, appropriately, for altitude sickness. That would explain why I didn't have very many problems while vacationing at sea level in Mexico this past February. I've known there was something off for well over a year, perhaps a year and a half or two years, actually. But it is difficult to explain to your doctor that being unbearably exhausted all the time, having nasty headaches and a whooshing noise in your ears is anything more than depression when all of the above are driving you crazy. (ok, my doctor was driving me crazy too, but that's beside the point)

I am attempting to lose weight (outside of this whole neurological disorder thing) and have lost 20 lbs since moving out of my parents' house a year ago (go me!). It'd be nice to see another 10 to 15 drop off, and then my doctor can shut her yap about being overweight or on the border at all, and maybe focus on other things like why exercise is important in addition to portion control (holy crap do I want to hit her sometimes, but I'm not violent...). The loss of 20 pounds, however, haven't resulted in any reversal of neurological fortunes for me. In fact, I think things have gotten worse.

Ok, I can't say that for sure. Maybe I'm noticing it because the drugs are working and I just haven't gotten the right dosage yet. The lumbar puncture/spinal tap made me realise just how non-normal I had been for the past who knows how long. Suddenly my head wasn't pushing out all the time... suddenly I didn't have a constant whooshing noise in my ears... they took my cerebrospinal fluid pressure down from 270mm to 150mm. Talk about a difference. What I wouldn't give to be normal like that again. And the drugs are helping. For the most part, I feel ten times better than before. But there are days where they obviously don't work, and I'm in such excruciating pain I can't focus. And then there are days where I think the drugs are working but I'm so exhausted all I want to do is sleep (like this afternoon, oddly enough), or I can't make my eyes focus on anything, or I can't focus on anything, or I'm at a loss for words, or I can't walk in a straight line. And I can't explain it other than to say "I have a neurological disorder" and hope people accept it.

Sure, it's not a brain tumor, it's not Multiple Sclerosis, but it's definitely not normal life either. I feel so dumb. I feel like all this working on a masters' has been for nought, because I'm going to get out of here with (or maybe without) a degree and not remember anything of what I did. ... or not be able to communicate it. I went to field school this spring and finally realised how much I LOVE teaching, but I'm worried that this... problem... is going to take away my ability to think on my toes. As I said to some people, it's like the smart person in me is being smothered by pillows, and I'm left floundering by myself. I guess I could knit. ... and not talk, but I'm not a good enough knitter for that to be my work-life. Not talking, however, is about right, right now, actually. ... which seems strange given what a chatterbox I normally am.

I just don't know. What I do know is that no one really gets it, because there's nothing to see. I still look just like I always did, I still sound the same, I just... fall asleep at my desk all the time, and I clutch my head in pain. Oh, that's the other thing, headache medicine doesn't really do anything. I've been advised (on my IIH-controlling meds) to avoid salycilates, which leaves me with Tylenol, I guess... and nope. So I just muddle through, and cry a lot. ... but I sure as hell don't get a lot done, and my supervisors, well-meaning though they are, don't know the half of what I'm going through. I guess I need to have another 'talk' with them.

shit, this is not a pity blog post. Don't pity me. This was supposed to be a "this is what's going on right now" post, but, well, I guess that is what's going on right now. Don't pity me. Or if you do, don't tell me about it. I really just want to walk away from everything right now and start over. Hell, I'd even wait tables or work as a cashier. ... just something that's not this. I've been having a reoccurring thought about the possibility of parallel universes and what my parallel universe selves would be like. If they'd have this problem too, or if they'd have different problems instead. ... and what I'd opt to live if I had that sort of choice. Minimum wage worker, no education, no savings, no future, entirely clean bill of health... or masters student, industry connections, promising future, debilitating headaches...

I'm really quite worried about what's going to happen next. ... because I KNOW I wouldn't have been able to get through the past 6 to 8 months if I'd been working a regular desk job, forget field work. Then again, the three weeks at field school were the greatest three weeks of 2008. I was full of energy, happy, and well-rested (despite only getting 5 hours of sleep a night most of the time). But I can't legitimately look into that kind of work knowing how exhausted I am all the time right now. I feel like I'm walking into the future blindfolded, and I don't know if the road ahead disappears into a gravel path, a stream or a straight drop-off.

Liatris ligulstylis2

... and on that happy note, obviously I've gone on a hiatus. I shall continue this hiatus for the forseeable future, as whatever time I do have, I am trying to devote to thesis work, not other stuff. And some days, the only words that come out are "I hurt" and those, well, I hate typing those. This was supposed to be a blog about crafty fun and tree hugging, but I guess, it's really just about me, and well, right now, I am about this neurological disorder (among other things). Hopefully soon I can return to prattling on about those other things. Until then, I may only post pictures at random intervals, just so there's something here to look at.

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