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!
I am so sorry you are having such a bad time right now. Please take care of yourself as best as you can, and I will say many prayers for you. Hang in there- we all have bad days, but tomorrow may be better....
Gosh...I know what that is like...it is soo depressing and awful...and I am really depressed right now...even though the pain is better than it has been in months...I have such a hard time staying afloat, getting things done, being happy. I feel like just trying to live with lupus is a full time job, let alone do other things, have a boyfriend, etc. I broke up with my boyfriend a month ago...and when I did I went into full fledged panic that I wouldn't be able to find a new one...in that i didn't have the energy to go out and date someone new...let alone the fact that I have gained forty pounds since becoming sick, my body is far from toned, and the prednisone gives me zits. So I feel ya, life sucks at the moment....I want to be a certain person....and lupus just keeps getting in the way!!