We hates it, we hates the white face

One of the most exciting parts about lupus is a totally invisible sensitivity to sun that leads me to break out the Gollum voice. I don't actually burn too easily - I usually get a traditional first-sunny-day-of-spring burn, but I usually avoid the sun when I can.

I tend to resent anything I "have" to do. I don't mind putting sunscreen on in the middle of summer when I go to the beach,* but I am also supposed to wear it on rainy days, snowy days, and under florescent lights. My particular brand of bitterness is difficult to explain. I think it comes from my 9-year-old sense of what's not "fair." (I'll try and explain that better at not-1 a.m.)

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*I...I don't even own a bathing suit. But in a crazy, upside-down world...
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Summer fucks me up in two shifts: an end-of-summer flare, and a winter flare. I do not know why it works this way. It's been suggested that winter flares in lupies could be due to accumulated summer sun coming back to bite our asses in the winter. I feel my best in autumn, but that might also be because it's my favorite season, I go back to school, and I'm generally happier.

Regardless: Summer flare. Hello! Welcome. I've missed you. I have this rash on my elbow that's been there for five (?) years (yet every time I go to the doctor they say "dude what's this rash on your elbow?" "Doc, I've had that for five years." "Really?" "Yes." "Oh, well. Hell if I know what it is.") I'd be tempted to say it's a birthmark or stained skin or something, except that it gets darker the more sun I get, and even moves down my wrist. That's the first sign of the end of summer.* I stop sleeping, not so much because I'm in pain, but just due to killer insomnia coupled with that fatigue that hits you over the head and every time I blink it feels for a second like I am not going to open my eyes again.

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*This year, evidently, the middle of summer
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The oddest symptom I get (and I think it's a factor of fatigue, actually), is this fever-without-a-fever feeling. I am clammy and sweaty but my temperature's normal (a little low, which I guess is what we've considered normal for me. My blood pressure, too.)

This post was actually supposed to be a silly little jabber about form rejects for the lovely Rejectionist's un-contest - but I am worn out with back pain and sleepy. (I am too in love with The Rejectionist to try and write something for her in this state.)

Also, debt collectors are after me again because of a chest x-ray I got in October 2008. This is despite the fact that we settled this with the hospital a year ago. Every once in a while, this kind of thing reminds me of how inept I am at dealing with the practical aspects of being ill. I can't organize my doctor's appointments (things I should have already done this summer: eye doctor, nephrologist, physical therapy), I can't even FATHOM how I'm going to pay for myself later, because none of my life plans involve careers that offer health benefits. Just the thought of all this is enough to keep me up another hour. Eep!

It's estimated that having lupus costs over 20,000$ per year, combining missed pay and medical bills.

And please remember that, technically speaking, I am in remission. I'm not on any medication. Most of my blood work is within range. Others have a whole world of concerns beyond mine, and I remember my days of doctors every three weeks and chemo once a month and collapsing when I tried to get out of bed. It is extra infuriating to be off meds and still be lying here at 1:30 a.m., unable.to.sleep.

Tomorrow: Form rejects!