Loretta

My name is Loretta. I have been fighting scleroderma for 10 years. It began in my hands with numbness. The next symptoms were severe lung involvement. I was having trouble breathing by the time I sought help my lungs had almost collapsed. I went through numerous tests and surgeries before they diagnosed me with Scleroderma w/dermyositis. I worked with a great deal of pain in my hands and skin tearing of my fingers until 1995. In 1995 I had a very severe flare-up and had to stop working. I had severe gastro problems which led to dehydration. In 1995 my muscles became so weak that I had to use a cane to walk and stand up. I also lost my hair, lost 100 pds within months, had heart inflammation, mouth problems, esophageal problems, mouth problems, stiffness in moving mouth and hands. The skin was constantly tearing from my fingers.

I was hospitalized for an extended time I almost died. I had to put on high dosage of prednisone. My doctor called in many specialist along with my Rheumatologist. The prednisone improved my life except for all the mental problems of depression associated with prednisone and the disformation of facial features along with hair loss. There came a time when my condition worsened again. This time along with prednisone, imuran, cardene they added cytoxan. I was not able to handle the side effects of cytoxan.

Things were worsening. I developed very thick skin in my arms which made blood test especially difficult.

I went through physical and occupational therapy for all the stiffness and my hands and body. I had trouble opening doors and opening bottles.

My occupational therapist ok'd equipment to help me use keys and open bottles, and to protect my hands while showering. I also had severe problems with cold especially my hands caused by Raynaud's phenomenon. The doctors put me on Cardene which helped with the circulation problems with the hands. All during these problems I had a lot of money problems and family problems.

I couldn't work and had to move in with my parents even though I was in my 40's. Social Security took a year to ok my claim and I had no income during this period. The problem was I had long term disability at work but no short term disability. If not for my parents I would have ended on the street with no money and sick and unable to care for myself.

I went through experimental treatment of plasmapheresis at Evanston Hospital. It was very painful they had difficulty finding sites to stick me with. I went through the treatments along with more surgeries.

It took a long time from the experimental treatment plasmapheresis for me to feel better, but I think it might have helped along with a lot of prayer.

Right now I am doing the best I have since I found out I had scleroderma. I am still under doctor's care and taking a lot of medication but things are pretty stable. I have been like this for about six months. It is a welcome reprieve for awhile. I get lonely though

I am on my own my mom and daughter moved away and my father recently died. I have been unable to go back to work yet though have been going to school part-time. That helps with the loneliness. I have a lot of money problems still I only get disability and I require so much medication. I still have to constantly fight depression.

Loretta

l.judon@att.net