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Sibel: Scleroderma and Raynaud's


Butterfly and Roses by Shelley EnszIn 1993, while washing my hands, I noticed the whitening of my hands, numbness and cyanosis. İ did not understand what was happening and decided to investigate and went to see a medical doctor. He said there is nothing to worry about just put gloves on cold days and take Adalat. But I didn't settle with this and decided to investigate further.

Changes in my body were very clear. İ wasn't used to tiring so easily and with the fatigue I had started to lose weight, and had difficulty in swallowing. Every day I had to visit doctors. İ was capable of expressing myself. I was feeling different and I was explaining things but none of the doctors were believing me.

İ had gone to various doctors in sequence: a cardiologist for the cyanosis; an ear, nose, and throat doctor for difficulty in swallowing. But I didn't know who to see about the problems with my hands and I was disappointed. My hands and feet were swollen and I had difficulty in grasping things. I had heartburn and I was always lying down. The fatigue was killing me. It was so bad that I was not able to do everyday things.

Changes in my skin was making me look different in the mirror. Deep markings (wrinkles) appeared on my face. İ was thirty-two but I was feeling like forty-seven. Hardness started on the skin of my arm and I did not know what that meant which was scaring me so much. The upper part of my eyelids were also hardening. İ was ill but nobody else was believing me.

One doctor had said it is psychological problem. I said to him," Look my hands and feet!" The doctor replied, "Yes there is “something.”

At a loss, I decided to see a dermatologist and she said, “Tell me your story,” and I told her what I had experienced. She listened to me until my very last word which was a first among the doctors I had seen. She first noticed my hands which were very hard and stretched. She said that I had scleroderma and should call a rheumatologist as soon as possible. She tried to explain scleroderma to me. This was the first time I had heard about scleroderma so I was a bit scared because I did not know what to do, but on the other hand I was happy because I got a diagnosis at last.

After a grateful thank you, I left the doctor's office and walked to my husband who was waiting in his office. While walking I was trying to think but it was very difficult to concentrate. I was unable to remember everything the doctor said. İt was very difficult to breathe. When I arrived at the office of my husband, I started to cry and thought, 'I have a very very bad disease.' I tried to calm down but it was very difficult.

This is the way I met scleroderma.

The next day I went to the rheumatologist's office for tests and medication. After a lot of tests I had started to take medication. But there were a lot of side effects. Although I had started medications, my complaints did not stop. İ was afraid to look in the mirror. Every day I was calling my doctor in panic. Some times he was postponing explanations.

My problems got bigger and wounds appeared on my hands. I was asking “why me?” My heartburn and the cyanosis in my feet got worse when it was cold outside. My problems and complaints got bigger.

İ was barely walking, although I used to love walking. For three months I didn't sleep. I always had pain in my feet because of gangrene and necrosis.

In 1996, I had some toes amputated. But the pain was not over. For five months I tried to walk with crutches. In the spring I was regenerating. Wounds started to disappear but I had to be protected from sunlight because my skin was so tender.

İ was seeking more information about my disease. İ had a diary and was writing about this experience. I also started to write poetry again. İ thought I should share what I had learned and what I had lived. İ also thought I should build a new lifestyle. I noticed that I needed counseling so I went to a psychologist.

The side effects of medications that I had made me very sad, for example because of lung involvement I had chemotherapy which caused me loss of hair, so I cut my hair.

Now I share my experiences in some organizations. I tell people what I have, what I felt as a patient who had a rare disease that many have never heard of and also how I felt as a wife, as a mother and how I will keep going on as I live.

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