Physically, my joints ache and swell, and I have kidney involvement. The Prednisone has caused "Cushing's Syndrome" -- fat humps in my face and neck and weight gain. I feel like a freak and am embarrassed to be seen. The chemotherapy caused my hair to fall out. In essence, I look like a fat bowling ball! I am depressed about it, but I try to take it one day at a time. I strive to find humor and hope somewhere everyday; (newspaper, TV or on the web). I try to laugh, but sometimes I cry and sometimes I wish I had never been born. I used to be a ballerina and now I can't walk. A lot of times I try to ignore that I'm sick and just tune it out. It helps when I write poetry and keep a journal. I also got a punching bag so I can let my anger out about this disease. While I feel I have received good professional care by well-educated physicians, I do not have the family support we all need. I do have a wonderfully loving and supportive husband, but my parents do not understand this disease nor do they want to. When they give me a hard time about being a "weakling" or just being "lazy", I isolate myself from them for long periods of time. The one thing I wish others could understand and accept is that I can't make advance plans. I never know how I will feel from one day to the next. Why can't they understand that I just "can't"? Tess ~ Ohio
While I feel I have received good professional care by well-educated physicians, I do not have the family support we all need. I do have a wonderfully loving and supportive husband, but my parents do not understand this disease nor do they want to. When they give me a hard time about being a "weakling" or just being "lazy", I isolate myself from them for long periods of time. The one thing I wish others could understand and accept is that I can't make advance plans. I never know how I will feel from one day to the next. Why can't they understand that I just "can't"?
Tess ~ Ohio
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