By week 6 my mother was so frustrated because
the Doctor told her when my symptoms got worse then they could do something for me. She
called he family physician again and he sent us to a Rheumatologist. The first thing he
did was take more blood and put me on prednisone. About 6 months later he put me in the
hospital for extensive testing. Through a muscle biopsy, breathing test and EMG I was
diagnosed but he never told us. The prednisone worked - I was on as high as 70 mg. I had a
chipmunk face but the swelling and discomfort everywhere else decreased.The first time
I heard the word Scleroderma was in 1980, he said I also had Raynauds and lung
involvement. At one time he even said I had kidney involvement but that is untrue
according to my records. I was on three inhalers at one time and about 16 pills a day.
In 1982 I got married and one month later was in the hospital for more test. There was
another muscle biopsy, breathing test and EMG. This time I had a GI series, too. The
Scleroderma was in all my muscles, my lungs, esophagus and intestine. Methotrexate was a
mircle for me. I’m still unable to work but I am able to go for short walks and I
have lots of time for cross-stitching. My medication has been changed and I no longer take
Methotrexate. I feel great.
And that is where I stand today. I had three hand surgeries, carpal tunel, and both
hands the pip joints are fused at 10 degrees. that surgery was the best thing I could do
for my hands because my left hand was completely closed. I have had three broken ribs from
coughing too hard. Every time I get a cold it turns to bronchitis within 2 days.
I had to leave my job in 1995. I worked for 15 years in a bank and I functioned as
everyone else did. I had to leave because of my lack of energy and the pains in my legs
and back. My husband decided he could no longer help me, so he left me. I moved from
Massachusetts to Florida. This has changed my life. With Raynaud’s, the warm weather
has been the best medicine. I live with my parents and older sister (who is also
divorced). As for family support, well at first I wanted to do everything like I used to,
so I refused to take any help and everyone kept trying. My mother always told me that some
day I’d be ready for the help and when I was she’d be there, and she was. My
parents have been great. I had to teach them not to jump for the phone for 911 every time
I coughed or choked. I had to teach them that every time I get sick I know when it’s
time to call the doctor. We get along just great. I have another sister and two brothers
and several nieces and nephews, they all know I’m sick but they don’t treat me
any differently. They love to tease me about the wheelchair I use to go out when there is
a lot of walking to do.
