I wear my sunglasses at night.....

Or, say, at 4:30 in the morning, with the computer screen brightness turned down as far as it will go, in an otherwise completely darkened room. It's the migraines, which turns out is not so much the Trazadone but my exceedingly high blood pressure.

WARNING: Bitchfest about lupus ahead.

My blood pressure runs regularly between 150-165/113-117. That's WITH the highest dose available of Carvedilol, twice a day. I'm getting a doctor's appointment set up to adjust my meds, but in the meantime....oooowwwwwww.

And the edema, which this time was about 25 extra pounds. It happens everytime I'm in the hospital due to oversaturation of fluids, usually medically necessary due to my kidneys not flushing properly. Given the number of times I've been in the hospital, and the 50 pounds I initially gained, I've gained and lost 190 pounds in 8 months.

Not given the damage it's done to my skin (stretch marks, wrinkles beyond belief, ankles that stretch out an inch and half more than they should, etc), edema also affects: Blood pressure, temperature, joint pain, and mobility. It takes about a month to bleed off, to which by then, I'm back in a hospital bed, gaining it all right back.

It's disheartening. I'm 35, never had a baby, and should look fucking amazing for my age. I instead look like I've had several babies and am fat. I try to ignore it, but it can do a number on one's self image. I'm learning (as many of us with chronic illness do) that there's little ill a good pair of tits and the deft application of make-up won't cover, but still....

I now have to go by the directions given on Tylenol dosages (no more than two pills every six hours), which barely keeps the headaches at a dull roar, lest I risk my kidneys. Ibuprofen, the most effective of all OTC pain meds for me, will make my kidneys fall out altogether. That is also disheartening.

I'm trying to not complain about the physical aspects of my illness, but it's hard to live an active life when one is filled with so much water that nothing you own even remotely fits you and have headaches that make even the sound of a door shutting completely jarring.

I mean, seriously. Who the fuck wears sunglasses at night? Corey Hart was not a role model, for fucks sake.

(That's something else I have decided over the last several months. Fuck curtailing my cursing, privately and publicly. Sans children, granted, but otherwise, fuck it. I'll say whatever the hell I want to, when I want to, because goddamnit, why the fuck NOT?)

I took my Tylenol. The migraine is now a headache, but I might soon be able to navigate the apartment without endlessly putting on and off my sunglasses. I have to look at that as a positive rather than an inconvenience.

And eat something. The meds do a number on my stomach, but if I don't eat, the nausea only expands into something crippling. It sucks to eat when every bite makes your stomach clench. It sucks to not eat when an empty stomach makes you feel like throwing up bile.

Lupus sucks altogether. I don't know how to make that a positive thing. I don't know if I ever will.

Fuck this sunglasses deal. But thank god I have a pair in the apartment anyways. The things we have to consider ourselves blessed for...jesus fucking christ.

This entry was originally posted at http://quirkytizzy.dreamwidth.org/1063880.html
You're not the only one here who's put out by needing to eat along with meds. Really fucks with other parts of my treatment plan.

...In case it matters much. I guess I feel (a little of) your pain, or something.