Babette Lawson
I just turned 30 on September 10th. I was diagnosed with Still's Disease 3 years ago after a long period of being extremely ill. It started with what appeared to be the flu and then I had joint pain so severe I could barely get up. I ran high (average 103) fevers and got what I thought was hives on my chest, face and arms. My sed rate and white blood cell count were sky high. After going through many hospitalizations and tests (including a visit to a hematologist/oncologist--I thought by the time I was diagnosed with whatever awful thing I had it would be too late) I was referred to the Rheumatology Clinic at University of Chicago. When I went there, I was amazed at the difference in care. The doctor reviewed my records, ordered some tests and told me what she thought I had. By my next visit, I was diagnosed with Still's. By this time I had already been on 60mg of Prednisone (which caused high blood pressure - so also a blood pressure pill), Plaquenil, NSAIDs, and Prevacid (so my stomach could handle all other meds). I was losing my hair, couldn't sleep (or think), gained 60lb and hobbled around in what seemed like a perpetual haze. From the onset (of this flare - after reviewing all my medical records the rheumatologist showed me that I had had other less severe bouts which were undiagnosed) my actual diagnosis took over 6 months. During this time I took a leave of absence from my job (and my normal life it seemed). My husband worked 2 jobs (while going to school) to support us. I was so sick that I could not even drive myself to the grocery store, pharmacy or doctor. I was relying on my parents and friends to get me everywhere. My Dad was so scared he came to my house and after finding me on the couch in same pajamas as day before he yelled "My God don't you even bathe anymore!" in an effort (I guess) to shock me into reacting. I didn't. Just cried after he left. When I think back to that time, I don't know how we (my husband and I) made it (financially I mean). By the skin of our teeth I guess. Since then I have gone back to work, although I have a lot of bad days. I am very grateful for the Family Medical Leave Act. It's difficult when people around you don't really understand that even though you may look okay (hearty and robust even thanks to Prednisone) getting up every day is very difficult. I was finally able to taper the Prednisone to 10mg daily (still on blood pressure meds), and am also taking Methotrexate orally once a week, Prevacid and recently started self injecting Enbrel twice a week. I decided to finally write in because I have had a particularly bad week (feeling a touch of the lay on couch with same pajamas). Through all this it's good to know I am not alone.
