I think it is July 27th, I don't remember. I hadn't written anything because I was holding off until I felt well enough to type in here but every day seems to change one good day I accomplish things I need to get done around the house, then the next day I don't feel so great. I read someone's blog that dismayed me a little, about not wanting to read the whining, complaining about aches and pains type of blogs about SLE but this is my blog, my own outlet to what I feel, just like I used to write in my paper journals.
Well where I am at now, I don't know, I have had these weird sudden symptoms, I don't think they are considered a flare because they go away after I rest. I just get this overwhelming feeling that I just don't feel good. I don't get nausea or dizzy or feel faint, it's hard to describe, I just feel sick all of a sudden and feel no strength or energy, not even to lift a pen or push a button I can't get my brain to tell my hand movement. Then the feeling comes back where I can and I move around just enough to get me home from work. Which now I realize, I shouldn't be doing. I have no where to lay down at work and I can't lay in my car because it is hot and that makes me feel sick too.
I just found that out the hard way couple of weeks ago, I was waiting in my car for my son to get out of his football practice and I didn't think I was affected by the sunlight because I am dark-skinned but I was wrong, just being in the heat raised my temperature and I got this overwhelming feeling of not feeling too good. Luckily my son came out of his football practice in time to drive us home. I just didn't understand what had suddenly happened. It was another wake up call that stuff is still happening. I'm not too aware of it all yet or exposed to what is to come.
I still break out in hives, take Benadryl when I can't stand the itching anymore, I get fevers especially at night, I get the "fog" and forget things, my lower back spine hurts more especially in the mornings when I try to get up, I don't sleep all night anymore because I'm tossing and turning again from the pain in my arms and hands when I lay on them for awhile. I still keep having the weird long, long dreams. At least now they are not nightmares with blood and gorey stuff. They just go on and on like a movie. I wake up feeling tired and restless. But I'm not kidding, every single night, I have these stupid dreams.
I left my work a couple of times last week without pay and that hurts me a lot financially and it just adds to my stress. I just have no control of the feeling that just happens I don't feel good and just need to lie down. My co-worker suggested I lay down in the empty office and just bring a sleeping bag and pillow and told me I shouldn't be driving in that condition either. All true, I just didn't want to upset my boss or risk loosing my job when this happens all of a sudden.
Well I finally told my Boss yesterday if it was okay to have a blanket and pillow to lie down only when I really needed and using either my breaks, lunch, or I'd clock out to see if I can feel better to keep working for the day, he said that he didn't have much of a choice and that I should start looking at Disability.
Today I just started crying at work when I searched about Disability and it was overwhelming to read, even though SLE is on the list of disabilities, it depressed me to think I was getting there at age 42.
Social Security Disability Listings of Impairments:General.Systemic lupus erythematosus (SLE) is a chronic inflammatory disease that can affect any organ or body system. It is frequently, but not always, accompanied by constitutional symptoms or signs (severe fatigue, fever, malaise, involuntary weight loss). Major organ or body system involvement can include: Respiratory (pleuritis, pneumonitis), cardiovascular (endocarditis, myocarditis, pericarditis, vasculitis), renal (glomerulonephritis), hematologic (anemia, leukopenia, thrombocytopenia), skin (photosensitivity), neurologic (seizures), mental (anxiety, fluctuating cognition (“lupus fog”), mood disorders, organic brain syndrome, psychosis), or immune system disorders (inflammatory arthritis). Immunologically, there is an array of circulating serum autoantibodies and pro- and anti-coagulant proteins that may occur in a highly variable pattern.
Reading about All these symptoms, diagnoses and stuff it said, just seemed like so much. I've read other people's blogs and they have all seem to have several of these symptoms, it just made me think, now which one is next for me to go through.
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