I have been off of the short medrol routine for about 2 weeks. Then we went to New Orleans this past weekend, I was exhausted from the flight, flight change, hungry and I had a severe rash all over my body when I arrived there. The next day, I spent sleeping until after noon and then went to the spa to relax in the steam room, sauna and meditation room. The problem is I feel terribly depressed. I was crying earlier this evening and just feel so sad that I can’t shake this disease. I don’t want to live taking steroids forever. I have a sad sinking feeling all the time. I have not painted, worked out or felt like doing anything. I go to work, and feel o.k. there. The people make me laugh and I am not stressed or over-worked. In fact, I truly enjoy my-coworkers. The patients are wonderful. I learn so much from them, their lives what drove them to use such terrible illicit drugs (meth, heroin, etc). Whenever I sit down to do an evaluation, I truly try to learn who my patient is first. ,I learn about the day, what motivates them (besides drugs!), what is important to them, what they liked to do as a child, what they did for work, who is important to them in their daily lives, what their goal is after they leave this facility, etc. I can usually get the most, what’s considered “difficult patient” to cooperate ,after gaining their trust, giving them the respect they deserve as a human being, and giving them the true feeling that I am there to help them. I can’t stand to relapse into my illness. It keeps me from doing what I love doing, my career. I probably should ask Dr. H. if I should stay on medrol all the time, or do pulse therapy. On a short round, then off, then back on, butI am fearful of hurting my liver, getting diabetes, and other horrible things. Most of all, I just feel so darn sad right now. When I relapse, I get depressed, and I am NOT the depressed type of person. Ask anyone. I have a trillion ideas for art projects but I seem paralyzed to do anything. This sadness of having this disease is hurting me.
I acquired AOSD in 2008. I have suffered so terribly and have found ways to help me regain my life. This my personal journal of this mystery illness to diagnosis. I hope that I can help others with my experience and information.