Rodney

I am 47 years old. My beginning came with considerable pain in my legs and arms, the muscles in my legs ached all the time. Sitting, standing or walking for any length of time was out of the question. I first saw a doctor for this in '82. I forget how many doctor's I've seen and all the tests they ran. For 2 years I did this and was finally told that I had MS and as far as the pain was concerned they said it's all in my head as the tests all came back okay, but if it still troubled me I should "learn to live with it." Carol and I could not accept this - her sister has MS and she has none of the problems I was having.

We didn't know where else to go. I had gone to every kind of doctor I thought there was - I didn't think of a rheumatologist and it was not suggested to me to go and see one. After 2 years of seeing doctor's and their tests I had enough and quit. Some time later, I got to a rheumatologist. We go into her office I sit in front of her desk with my hands folded on the desk top, she comes in and I tell her my problems as she is looking at my hands. Then she tries to pinch the skin on the back of my hands. All she said was, "Boy you have thick skin." I asked if that had any thing to do with them hurting all the time being cold, and the color of them, she said it's possible, but would like to run a couple of tests first. The test was a muscle and skin biopsy. The test results came back, I have scleroderma, and Raynaud's. I asked her how do you deal with it and she said you don't but to take one aspirin per day and to come in and see her every 3 months for follow up, I asked her what is scleroderma? Is it fatal? Is it crippling? Just what are we dealing with? She said it wasn't really that important that Carol and I know. Well we walked out of that office and have never been back, but I'll always be grateful for what she did for us. Having scleroderma is a long way from having MS.

For maybe 2 months we spent every bit of extra time we had in the library. I found it to be a great place to learn about something like this. Carol got in touch with the United Scleroderma Foundation and they were a great help. We had a new family doctor so we went there to try and figure out something for the pain now that we knew what the problem was. He tried everything - Demerol, Dilaudid, Toradol injections, nothing seemed to help. He sent us to a Swedish medical center pain management and eventually I had an implant that dispenses a continuous dose of morphine over a 24 hour period. On a scale of 1 to 10, my pain now stays about 1 to 2 unless I try to do too much. This is a welcome change.

I am having breathing problems now after just a little exertion, so we see a pulmonary specialist at Swedish medical center. The disease has spread to my lungs , turning them fibrous. Also my heart and kidneys are now affected. I use several different medications, Prolosec & Propulsid for reflux. Accupril I take for blood pressure , Demedex for water retention (now I wear the zipper out first on my pants) MSIR (morphine pills)is for break through pain for days that get real Bad, folic acid and Compazine for nausea, Arbuterol inhalers and also a pulma aid machine for my breathing problems.

I can't say enough about Swedish medical center. The people are so wonderful. They have treated Carol and I with respect and given the best of care. The mistake I made was not listening to Carol. She said I should not give up going to doctors, the right one is out there, we just have to keep looking.

When I found out that I had scleroderma and what it was, I got mad first then I felt hurt and sorry for myself. Now I feel good . Oh I still have the breathing problems , my legs still feel weak all the time, I'm retaining fluids so I've swelled up like a balloon. I feel good now because it's great to be alive. I have the most wonderful wife in all the world. I could not have come this far without her. She has given me 5 of the most beautiful children and these 5 children have given us 12 of the world's most perfect grandkids. Without this beautiful and wonderful family to help me I would not have come this far so, yes, I do feel real good and thankful. Thankful that God has blessed me with this disease rather one of these other people and for that I am very, very thankful.

I quit working in April of 97. I had heard several people who had tried to get their disability so we weren't sure what to expect. We filled the paper work out April 1 and about 90 days later we received a notice that we had been approved. 5 months later I got my first check. I think I was very lucky to be approved so fast but I had some of the greatest doctors working for me and I think they were a big help.

This is the end of my story. I hope maybe someone will read this and it will be of some help to them. Having scleroderma is not the end of the world - its just another chapter in the book of life that God has given us to read. What we do with it,how we handle it is up to us. Would like to hear from others . Thanks,Rodney

email to grandkids131@netzero.net

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