WeAreLupus.org - The Social Support Network for People Living with Lupus & Fibromyalgia

When it all started

I was 5 months pg and I had my first seizure ended up in ICU got through that started taking Dilatin (DON'T RECOMEND FOR ANYONE). A month later I was in a bad car accident...I was fine and  so was the baby but I was left with scaring on my face and being 17 and pg in high school I thought it was really bad. Thats when I had my first experience with steroids...I was not healing "the right way" so I had to get steroid shots in my face it was very very painful. I had my baby and the seizures just got really bad. I was having up to 5 seizures a day and they could never figure out what was causing them. I applied for SSI and was denied. I wanted to work and have a normal life so that is what I did...I learned to deal with everything and having helpful and understanding ppl in my life helped. In '04 I had my second baby and had moved back to my hometown. Thats when the Lupus kicked in!! For some reason I was hurting and it was hard for me to get around. It hurt me so bad just to change a pamper but didn't want to tell anyone about the pain because I didn't know what was srong with me. After a month I went to the doctor and we tried all kinds of meds and nothing worked. There again I leraned to deal with the pain and took ibprophen like crazy. I went to visit family and the Lupus came in full force. I was in the emergency room every other night with the most horrible pain and dropped down to 95 pounds. I was finally admitted into the hospital and they couldn't tell me what was wrong with me just what they thought it could be. I started seeing a doctor and he was really mean and he didn't believe anything I was telling him. Until I had a bad flare and I went to see him and they ran all the tests and he told me I had Lupus. I had no idea what this was and other people that I would talk to would just tell me that it was not all that bad of a disease to have. Well it is...all the meds, weight gain and loss, rashes, loosing your hair, not being able to move gosh I could keep going and going. Its really hard right now because I have no insurance and ppl don't understand how hard it is. I am very lucky beacuse I do have my girls, family, and a very understanding boyfriend.