| | Misery loves company...
Since I feel too bad to go to my support group tonight, and too bad to sleep, I thought I'd whine a bit here. It hurts to type and I've had to take the splint off my arm, but it'll be worth it. It always is.
First, I guess you already know I'm miserable. I did four days of too much "going," and now I'm feeling the worst that I have in months. I can't sit up long, I can't lay down long, I hurt in all my bones. I feel feverish, with chills and dizziness, and it hurts to breathe. My face is lupie red. Do we ever really know if we have a virus or a flare? I think not.
I just had blood work done about a month ago, and everything was negative, so I should be fine, right? I've had positive ANAs, etc, before, and was diagnosed by a skin biopsy. My old rheumie said I had cutaneous lupus, the dermatologist said i had systemic lupus, and the neurologist said I had CNS lupus. No one agrees, so I just say lupus. I lost my job, and hence, my insurance. I've migrated from charity clinic to charity hospital while waiting for my disability results, and now that I've got disability, I'm waiting till May for Medicare to kick in. So, I'm still at the charity hospital where I never see the same rheumy doc twice. It takes forever to get an appointment, and I can't sit in the ER for the 8-12 hours it takes to be seen. I'm on prednisone 5mg/day, and can't get plaquenil that the docs want me to take because the charity pharmacy doesn't carry it. I also have fibro, APS, hypertension, all the itis's one can have, and I'm obese.
I know that this emotional fallout will pass, the flare or whatever will pass, and May will eventually get here... but today at this moment, I feel so overwhelmed, frustrated, and miserable that I needed to reach out and know that others go through these things. I read all about what your docs do, and I don't have that ability yet. So, I've got 4 months of unaided suffering to go through. I keep telling myself that others have it much worse, but it doesn't help me feel any better. I do wish they had it better, but it doesn't change that I'm miserable.
I'm rambling. Now I'm gonna put my splint back on and hope for responses.
Thanks for listening.
Susan, aka handmade_n
Lupus, Fibro, APS and more!
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