Monday, July 3, 2017

Spigraine day

June 29, 2017

It's a "spigraine" day. (spinal migraine) I tend not to bother elaborating on this kind of suffering, this kind of day (or sometimes days on end) because no one really wants to hear it that much. You feel like a bedridden non-exister. Locked away in a sick tower from hell. I wouldn't wanna hear about it - It's tragic as f***. Have to do something to make up for it, somehow, find peace in the end. But anyways, here's s Spigraine day, read if you dare;
Yesterday I actually had some spoons to go out, though I also had to (to get my IV.) But I have been untaped, when my spines' pretty unstable, and I went around untaped yesterday, to my infusion etc. I'd arrived with my thoracic brace earlier but then took it off later, after my stomach started bothering me too much to have a tight girdle around it. As I exerted, as i moved about, I felt areas of T spine shifting very squeamishly (damn it my thoracic needs to be *fused*) then it started to ache deep. Like bone cancer almost. Like a bad toothache - in your bones..throbbing and aching from inside out.. that's what EDS pain feels like to me. Sorry to be graphic but, for real.
I'm paying hard today. I feel like I am on fire, as well as aching. The difference is it's not just a tooth, it's bones. I can't call a doctor to pull out my bones like I could call a dentist to yank out my tooth. Have to wait until the bones' intense anger subsides. Until then I'm a hostage of my body. In bed unable to move.
Then i hurt my arm trying to move my computer to protect my mangled and uber inflamed spine.. and I can't even ice it cause ice hurts my skin. Tried. In vista collar, but it's hurting me. But it's hurting me more, when it's off, I feel like my skulls getting crushed. The hurting gets so bad you want to throw up or pass out, and you drip with sweat, sometimes you tremor and shake.. it feels like your dying of cancer or AIDS or something .. Not exaggerating. For real.
To boot, GI is still upset from antibiotics and food reactions (hence why I'm starting on cromolyn, I have inflammatory GI from almost everything to some degree or another, and I can't starve.) I can't stand this untaped stuff.. and I'm stuck unable to begin my cromolyn .. to help settle my stomach and stop this skin reacting to tape bs .. until I complete this mast cell test ..which has to be on monday thanks to holiday. My skin may settle down, now that I'm done antibiotics though.
Hope barriers will resolve so I can tape again. Need to. EDS is gutting me w/o it right now. I bought this medical, hypoallergenic barrier tape stuff from Rexall, to put under the tape, and think going try to use it this evening.. I can't handle being untaped and falling apart like this, like from the inside out and outside in. EDS is gutting me right now.
Thanks a lot holiday. I don't feel that "in the mood" to celebrate a country which has mostly failed me re: my medical needs, and has let me rot (literally) and dragged me down so far in refusing to accept my condition that now I'm deeply so sick with, and probably shortened lifespan/gradually terminal. Because being a pretty living corpse is so useful.
Trying to do something here from my bed. In vain. Pretty damn tough. Feeling like a tubercular, black hooded little lady at the controls of a machine .. somehow .. something .. can't just lay here. Uggh ..

N.M. Rose Guedes

www.bionicrose.org 

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