Dot

I have had symptoms of scleroderma for at least 20 or 30 years! I would go to a doctor and be told there was really nothing wrong--"just go home and forget it-you're in excellent health". I just thought I was the ultimate hypochondriac.

About eight months ago I lost my job as a church organist after playing for seventeen years. This was extremely difficult for me. Physically I just collapsed in a puddle. My heart was behaving really nuts--skipping beats, double beats, I had trouble breathing, etc. I made an appointment with a cardiologist, had a echocardiogram (a very interesting thing), was told my lungs were constricted, a portion of my heart was not functioning as it should. I asked him what he was really saying and he replied, "you really need to see your rheumatologist". I asked if he suspected Scleroderma and he said yes.

My rheumatologist did not believe me because "nothing shows in the blood work". She had taken so many blood samples--5-7 each time I would go in (about every 3-5 weeks for almost a year), there soon would be nothing left for the Minnesota state insect, the great Minn. mosquito!! I had breathing tests which were almost normal, a chest scan--horror!! I reacted to either the contrast medium or to stress and "flat-lined". I could hear everything going on, including calling for crash cart, etc.

I'm trying to do the things my body needs to keep functioning. I spend a lot of time gardening--flowers, annuals and perennials--vegetables are wonderful, but you always have to can, freeze, etc., which means more time must be spent in the kitchen, when I could be outside. I am trying to pay attention to my body's needs, I find that usually the foods (fruits, veggies) contain something that is needed by my body in the scleroderma saga. I am currently taking methotrexate, this seems to be taking some of the pain and stiffness from muscles, etc..

The nastiest part for me is that my five children (all grown) and some of the twelve grandchildren are having connective tissue disease symptoms of one kind or another of the disease. My mother and grandmother also had this type of diseases. For me the severe muscle spasms in my lower back are the most painful. What can I say? We just have to try to keep on trying!! Or as a dear friend of mine says "I feel so bad, I think I'll go outside and eat worms". Laughter helps more than anything else and it's much less work than crying. Hubby and me just celebrated our golden wedding anniversary--and we're counting on celebrating seventy-five years.

Dot

rysdam@youbetnet.com