Diagnosed at 14

What do you want others to know about lupus?

It is a difficult disease to live with. I have been under control on medication most of my life. 40 years now. I have had 3 hip replacements due to avascular necrosis. Complications due to steroids can be just as devistating. I am married have 3 wonderful children. I felt the best when pregnant.

Why is lupus a cruel mystery to you?

My worst flare up was when I was 28 years old. I almost died. My skin was sloffing off and I was getting infections. I was on the maximum oral prednisone dose. 90mg a day. The doctors decided to start cytoxin and solumedrol IV 3 times a week. I lost all of my hair and looked like a chipmuck. If this didn't work they were going to start plasmaphorisis. After 6 months of treatment I stated to get better. I had to go out on disability and move back with my parents for a year with my 2 year old son. It was the most difficult time in my life. I have had minor flars since then. HS was also a difficult time. I was in the hospital 4 times my senior year and almost didn't graduate. I have 2 masters now. MSN in nursing administration and MAT in science eduation. I stated a LPN program for Mildred Elley and worked for them for 3 years. I was afraid I would flare up again because I was working days, evenings, and weekends about 70 hours a week. I quit and went to work for NYS corrections which was a bigger mistakes. I am presently unemployed looking for work in education again. My skin and joints are affected the most. When I am under stress I get chronic uticaria. I had it that last year I worked for Mildred Elley, so I knew I should quit and take care of myself. Taking care of yourself is a priority!


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