You are not alone. *hugs*
I have been battling my Lupus for about 4 years now.
I am now in remission, and have been for almost 1 year...but it has been quite a war...and one I know will never truly end, since it is a chronic illness with no cure.
I first got sick at 19. I was tested for mono, HIV, Hepatitis, Leukemia, Lyme, etc. At that time, my main symptoms were my EXTREME fatigue...I had to crawl to the bathroom., high fevers, and a nasty, blistering rash. THe same week they came back with the Lupus diagnosis was the week my kidneys crashed. I woke up onemorning and was all swollen, and we found out they had shut down. I was on dialysis for a year, and was trying to pursue a transplant when one of them turned around and I regained function. I had about 2 months of doing pretty well, and we were hoping I was going into remission, when one night, I was sitting on my couch talking on the phone and watching TV with Aaron, and I went into a grand mal seizure. I stopped breathing and turned blue, the paramedics came and resusitated me. After that, my seizures went out of control. I was having up to 15 a day, and most of the time when I had one I would stop breathing. The doctors could not get ahold of them, and I spent about a year in and out of Intensive care. They thought I mwas going to die. Finally, slowly, some of the medications began to work, and they slowly lessened....it has now been about a year since my last seizure. I am now off al medications, back at work, and back in school. I am engaged to the man who stood by me through it all, even though we had only been on 3 dates when I got sick. I hope to have kids very much, but there is a good chance it won't be possible, both from the Lupus itself and the medications I took. I am in remission, but with an illness like this, it is always sort of peeking over your shoulder. I pray I will have a long remission, but there are no guarantees. I embrace EVERY moment, and am grateful tfor every day.
RIght now my only lingering effects are that I cannot go in the sun AT ALL.
You had asked in your post about treatments/medications....I have had a LOT!!! I took high dose steroids, which made me gain a TON of weight. (The weight DOES come off, though!- I am back to my old weight and I have only been off the steroids for about 6 months.) I took alot of different immunosuppresants like Imuran, Plaquenil, etc....and I took several rounds of chemotherapy...I was on chemo for about 4 months the first time, I think, and about 6 months the second time. YUCK!
I know this is a LONG post, but I thought I would share my story with you, and let you know that no matter HOW BAD it gets....ther IS a light on the other side. PM me or whatever you want if need to talk or have any questions. *HUGS*