My name is Terri Simms, and I am 48 years old. I have been diagnosed with scleroderma for 17 years.
When my son entered kindergarten, I was 27 years old. I started waking up in the morning with stiff and swollen hands. My family doctor told me I had arthritis, so he put me on medication to treat that. I worked in a restaurant with my mom and sisters. Everyone noticed that if I went to the walk-in freezer I came back with really white hands. The doctor told me it was nothing to worry about. He retired so I had to see a new doctor.
The new doctor ran some tests and told me I did not have arthritis. He decided there was nothing physical wrong with me so he put me on tranquilizers. I hated the way they made me feel so I quit taking them. By that time, my hands were turning blue and hurt quite a bit. I thought about going to Hollywood and trying out for the part of a dead body.....I wouldn't require any makeup! The doctor still said he could find nothing wrong.
My husband was transferred to another town so we had to move. I got another new doctor, but I never said anything to him about my problems. After all, I had been told it was all in my head. One day at work I noticed a sore on my finger which was extremely painful. My doctor was on vacation so I saw another doctor. He told me I had injured myself and it would be better in a few days. I couldn't understand how I could hurt myself so badly and not remember. When my doctor returned from his trip, I went to see him. It was a cold January day, and he was ready to see me as soon as I got to his office. He took one look at my blue hands and was on the phone immediately making an appointment for me with a vascular surgeon.
After that things moved very quickly. The vascular surgeon sent me to an internist who finally diagnosed my scleroderma. It had taken five years to get a diagnosis, but I was relieved to know what I had and that it wasn't all in my head. Of course, I was only given five years to live and I still had two young children at home. I used to sit and watch them sleep and cry because I would never see them grow up.
My doctor seemed very negative and unable to answer many of our questions so he referred me to the rheumatologist I have been seeing since. He has been wonderful and has never given up on me. I have two doctors that I have a lot of faith in to help me. One is my rheumatologist and the other is the doctor that treats my stomach problems.
I have been told I have the systemic form of scleroderma. I have Raynaud's which I have already mentioned. I take Procardia XL for the Raynaud's and rarely have an occurence. They have stopped calling me a Smurf. I have only had one ulcer which finally healed. My skin on my face, arms, chest and legs is tight and shiny. Sometimes the itching is awful, but I use lots of creams and lotions. I have minor lung involvement at this point and occasionally get a dry cough that seems to come from toes. One of my co-workers said she wished I would cough up the hair ball and be quiet!
My worst problem is my esophagus and stomach. Some nights I can't even lay down. I try to avoid foods that I know will cause me problems. I am on prevacid right now which seems to help more than anything else I have taken for the problem. Most people with scleroderma seem to lose weight, but I have the opposite problem........I seem to gain. I have a lot of swelling in my legs and ankles. I am starting to have problems with my knees.
I feel very fortunate. I get up every day and go to work. Of course, when I get home I collapse and do nothing else. My husband, Steve, has been absolutely terrific. He wouldn't let me give up even if I wanted to do so. I not only got to see my two children grow up, but I now have three wonderful grandchildren that light up my life. My son recently brought a photo of our family and said to take it to work and put it where it would remind me why I can't give up. My daughter does a lot of my housework for me so I can rest and have time for the family fun! I know I couldn't make this journey without any of them. They make my life special and give it meaning.
I have always wanted to help someone else with scleroderma. However, there are no local support groups. Several years ago I agreed to do an article for the local newspaper and a few people contacted me, but we were never able to get a support group going. Maybe writing this will help someone else. Knowing there is someone who can understand what they are feeling is very helpful.
I always like the articles "I'm Making It" because I am!!!!!!!!
Terri
You can reach me at: TJSimms413@AOL.com
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