Posted 3/6/2014 7:35 PM (GMT -7)
Hello, I'm new to this forum thing, but I wanted to share my lupus experience with everyone. I'm a 33 year old female from Indiana, and I was diagnosed with lupus in 1994, at the age of 13. At the end of August, I started having a headache and no matter what I took, it wouldn't go away. I thought I could've been tired because I was attending school at Indiana University and staying up late on most nights, studying. I ignored it at first, but I started to worry after a couple days. I didn't want it to be a lupus flare, but that's all I could think of. A few days later I was getting sicker. I wasn't able to keep any food or liquids down and started getting dehydrated. Then I started sleeping ALL the time. I only got up to go to class and went back to bed afterwards. I couldn't handle it anymore and went to the see the doctor at the campus walk-in clinic. Usually, I'd have to wait half a day in the waiting room, but they put me in a room as soon as I got there. I was seen by the doctor within 5 minutes. She immediately ordered blood work. The blood work showed that I was having a flare. By this time I was dizzy too, but I managed to drive to my apartment and my roommate took me to Indianapolis where my rheumatologist was located. I got in a room in the emergency room. I ended up having meningitis and encephalitis with my lupus flare. I was also out of it for 2 weeks, don't remember anything from those 2 weeks either. I don't even remember 9/11. I went to rehab to learn to walk, talk, and eat again. I had paralysis in my face and my eyes had crossed. The paralysis ended up being permanent damage. I'm unable to make facial expressions, like smiling. My eyes were fixed with surgery though.
My flare was so bad that my rheumatologist suggested a stem cell transplant. At the time it was an experimental thing, and the doctors that were in charge of the experiment had to accept you. I was accepted, my dad, mom, and I moved to Chicago while my brother and sister stayed home with relatives. The whole thing took about 3 months altogether. Since then, I have been lupus free. I hate that I got so severely sick, but I am glad I got the stem cell transplant. There's one thing/theory of mine I would like to add. Before my transplant I smoked weed. When I went to college, I quit and had a flare. A few years after my transplant, I started again. I have learned that quite a few other people that were part of the same stem cell transplant experiment I was part of have had flares and their lupus is no longer in remission. I think that part of the reason why my lupus stayed away before I went to college and is still in remission 11 years post transplant is due to weed. I'm not saying it's a cure, but it does work for me. I am also not telling anyone to try it, but I personally would as a last resort.