Thank you everyone. You all are very sweet.As far as my Lupus, I got diagnosed about a year ago. I hate it!!! I feel like I've lost my life. The only good thing about it is that I get a lot of scrapbooking done now. I actually have a hobby now that I can't be as active as I used to. And let me tell you, it makes you feel so old.
Sometimes I can hardly get out of bed. Dylan is very understanding about it. I am blessed to have a child so understanding. Kai on the other hand is far too young to realize that mommy doesn't feel good, and still begs for the attention. On top of that, I also have restless leg syndrome. My muscles seriously convulse every day. It's annoying and painful, and feels very strange at times, but it is also fascinating. I made a friend watch my legs "dance" the other day at work.
You find a way to deal though and make fun of it. When I first got diagnosed I would joke at work that I couldn't answer the phone. "Oh the phone's ringing. I can't answer it. I have Lupus." LOL. It was funny. Once, while trying to explain my muscle spasms, I referred to my leg condition as "wandering leg syndrome". LOL. My friend started laughing hysterically, and told me to hurry up and catch it before it runs off.
My work has not been very understanding though. They still work me very hard, even though some days I feel like I can barely move. Right now I'm on prednisone...horrible! I've always had a weak bladder, and now that I'm on these meds I have to pee every 30 minutes! When I'm at work I'm the first one who opens, and I don't have someone come in to relieve me until 11. I start at 7 am! So I have to wait 4 hours before I have a chance to go to the bathroom. It's very annoying.
About 3 months ago I started getting really bad eye aches. Come to find out prednisone causes pressure build up in your eyes and can lead to cataracts. None of this was said to me before they started me on the medication. I found this out from my friend Julie, the one with kidney failure, as she's on it as well.
I feel like a walking medical book. I can't count how many medications I take daily. It's a lot. I am on Levsin and Protonix for my stomach, pred, tylenol with codein/tramadol for my pain...I rotate these two with regular Ibuprofen 500's, Cipro every now and then to fight off whatever stupid infection I come down with, Vitamin D as I am also vitamin D defficient (as are most everyone who lives here), Ativan for my anxiety (and let me tell you, nothing can make you stressed more than not being able to leave the house!), and they started me on Trazadone (which is a low dose anti depressant) to help me sleep at night. That stuff knocks you on your butt!!!
Also, I really believe that if I hadn't moved to Oregon I'd still be healthy. This city is infected with disease. I was fine before moving here. Granted, I had my endo before moving here, but so much has been added on to my bad health list. Get this...my friend is 24 I believe, she has 3 different types of cancer. Melanoma, Leukemia (the same kind that my ex had-go figure!), and some other type that I haven't asked about. She works at the hospital too.For some reason she still hasn't gotten the flu yet. Weird. Anyway, Phil my ex who is also in his early twenties has Leukemia. Julie has kidney failure due to an auto immune disorder, Jacob had Hotchkins Lymphoma (he is Phil's best friend), and Matt (my future husband...we got back together btw) has very very bad psoriasis. My son Dylan, who just turned 8 a few days ago, is autistic and is now suffering from early puberty. He's been to a few specialists and we are waiting to hear back to let us know if he needs to be started on hormone injections! Dylan also suffers from a rare eye condition. He is almost blind in one eye. If caught early enough the problem can be corrected with glasses, but if not he'll have to have surgery.
My friend Felecia whom I work with has a son that developed severe pneumonia while he had the H1N1 virus. He was taken to Dornbeckers for a week. It has been more than a month and he still has an abscess in his lung. He is seeing a specialist to determine whether or not he'll need surgery. He has a permanent iv line so his mom can give him antibiotics at home. They're doing a bunch of tests on him to find out what's wrong, as he is always getting infections off and on with very high temperatures. He is 5 I think.
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Originally Posted by Pinot's Mom
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