I've had diffuse scleroderma for a little over ten years. My earliest symptoms were severe joint pains in the knees and shoulders. At that time I was a running about 4 miles a day and I had just retired from a career as a registered nurse to become a computer programmer.

One day in October I was waiting outside a restaurant in New York and I noticed that my right hand was white and waxy colored - exactly like a dead person's hand. At that moment. I knew something really bad and scary was going on.

In a matter of days, I had ulcers on my finger tips. I started to feel tired all the time and sometimes became profoundly exhausted. As a nurse, I knew scleroderma was a possibility because I had seen a case in the hospital. I told my family doctor I would jump off a bridge if I had it He sent me to a rheumatologist.

"Just a little Raynaud's, nothing to worry about!"
"Could it be scleroderma?"
"No, since you don't have any joint pains or other symptoms, I wouldn't worry"
"But I do have joint pains, I just told you..."
"You'll be fine, don't worry"

The closing line of his report to my family doctor was "Treat with reassurance." I'm still angry about that ten years later.

When my hands and face started to tighten up, I knew what I had, even though the rheumatologist still hesitated to make the diagnosis. For some reason, my blood work didn't show anything abnormal for a while. Heaven forbid he should look at the patient! Even though I was a nurse and knew the ropes, and KNEW WHAT I HAD, I couldn't get diagnosed for six months. Although I got much sicker later on, this was the most difficult period of my illness.
When I finally got my diagnosis, I could settle down and start to cope with the disease. For the first seven years, I did great. I had to keep warm, and get plenty of rest, but I had a successful career in software development. Since my husband and I don't have any kids, my work was the most important part of my life.

My pulmonary functions showed that my lungs were progressively worsening, with my diffusing capacity going down ten per cent a year. This was scary, but somehow I adjusted to it and didn't worry too much.
Then, three years ago, the disease came at me with a vengeance. My skin tightened on my arms so I couldn't straighten them out. My fingers curled up. I was so exhausted I couldn't work, but I kept trying. I could barely get up from a chair. I had terrible pain from ulcers on my elbows and fingers. My diffusing capacity went down to 34%. At one point the skin on my chest was so tight, I couldn't stand up straight. I had maddening itching on my back, chest and arms.

Suddenly, I couldn't go to work, bath myself, or dress myself. I couldn't cook or clean, or pick something up from the floor, and I used to drop things all the time because of my fingers. I couldn't brush my hair or wash my face. My husband took beautiful care of me. I don't know where he found the patience. When he would help me put my socks on I would burst into tears because I felt so helpless.

One doctor told me I had a year to live. He called the results of my pulmonary function test "a death sentence."
That was three years ago. I got some therapy to help me cope. I got rid of my negative doctors. I have a dressing stick, a car stick, an electric toothbrush, a sock put-er-on-er, a reacher, long handled hairbrush, a stick my husband made me for shaving my legs, a long-handled shoe horn and a handicapped license plate.

My ulcers have healed. My skin has loosened up a bit.

I have diffuse scleroderma with: fibromyalgia, Raynaud's syndrome, mild dysphagia, many telangiomas on face and hands, severe heartburn, lung damage, tight skin on face arms, hands, trunk. I'm on full disability.

Drugs I take: Penicillamine, Imuran, Prednisone, Pepcid, Fosamax, Relafin, Os Cal
Drugs I've taken in the past: Cyclosporin, Methotrexate, Trentyl, Minipress, Calcium channel blockers.

I have four great doctors:
Dr. King - family doctor
Dr. Franklin - rheumatologist
Dr. Medsgar - Best in world for scleroderma
Dr. London - Psychiatrist

A great nurse - Carol Blair RN
I have a great husband - Jim
My family and friends have been terrific.

Dr. Medsgar put me on prednisone because my joints were getting bad. It didn't help my joints, but my bad pulmonary functions started to improve. Now my diffusing capacity is up to 64%. To me, this is a miracle.

I tried to go back to work last year, but it was too much for me. But I'm independent for the most part, able to drive a car, cook dinner, go for walks. My main project is to improve the presence of scleroderma on the net. I would like anyone with scleroderma to be able to do a search and find not only organizations, but also real people who are coping and living with scleroderma.

I hope we can get all our sites linked up to each other and our stories told. When I first became ill, I would look at the faces at the mall hoping to find someone like me. Perhaps we can find each other on the net.
My illness, for all it has taken away, has given me wonderful mindfulness, clarity and a feeling that the world is enchanted.

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Copyright 1996 by Kate Nance. All rights reserved.