Since I was always so athletic and full of energy, I could not understand it when all of a sudden I was tired, restless, short of breath while walking, with ulcers on my hand and swelling in all my joints.
Similar to many others, I was misdiagnosed for more than a year with so many diseases and given all types of medication for different problems except for the real disease.
I knew something wrong was happening or was ready to happen but did not know what it was. In the meantime I kept working and working, taking all types of medicines that were only disguising the disease.
In November 2000 I ran to my primary doctor's office because I had so much pain in my legs. I found out he was on vacation. Not knowing what else to do, I accepted an appointment with the doctor who was taking care of all his patients while he was out. This was my luck as you will find later in my story.
As soon as I walked into this doctor's office he looked at me, and while reading my chart, he asked me if I had an allergy test done. I said no. He sent me to see a specialist in allergies. It was almost a year of treatment and medication and nothing seemed to work. The first thing the allergist told me was, "I do not think you have any allergies. I think something else is wrong with you. I'll do some tests and let you know."
One hour later he came back and asked me if I was feeling dizzy or faint because my lung volume was so low. It was at thirty percent. I said I wasn't, but that I was feeling a little tired. Immediately he called the hospital and told me to go home and grab some things and go to the hospital and let them know he sent me. He also told me to be prepared to be in the hospital for few days. It was all shocking to me because I was very concerned by then as to what really was happening with my body.
When I got to the hospital and they admitted me immediately to the emergency room and started doing tests, tests and more tests. In one of the tests the doctor became more concerned because she saw something in my lungs. That night I was admitted into the hospital. It was November 11, 2000, a day after my daughter's birthday, and I had to be admitted to a hospital with an unknown disease without knowing what else was next.
The next day a pulmonologist came to visit me and told me he was going to do run a special blood test and will let me know in a couple of days because the tests needed to be sent to Albany.
By now, I was on oxygen with an IV and so afraid that I was going to die, but even more concerned for my poor daughter and leaving her alone. When the test came back, the first thing the pulmonologist said was that I had pulmonary fibrosis, Raynaud's and what he thought could probably be the root of all these diseases, sarcoidosis. I asked, "What was that?" My daughter, who was there with me, wrote it down on a piece of paper to search for the meaning of it on the internet.The pulmonologist said he was not absolutely sure of what it was, but that he would call in a rheumatologist who would be able to tell me more.
That night my salvation came to my rescue. The rheumatologist came around 8:00 P.M and had the sweetest face I have ever seen. He looked at me and at my hands that were all ulcerated and with calcinosis on my nail bed and touched my skin and said, "I think I know what you have but I will give a look at all your tests first and will come back to you."
When he came back he dropped the word, the magic one. "You have scleroderma and it has advanced very far. You have it in your lungs. There is no cure at this moment but we will treat it as if it were a cancer. Even though it is not a cancer, I will start you with high doses of chemotherapy in pills and a corticosteroid. I will keep a close supervision of your liver enzymes and we will see how it works."
The rheumatologist asked me if I had a child or not. He said that after being on chemotherapy it may be risky for me to have a baby. I was so thankful to have my daughter, so I told the doctor I have a daughter, so please go ahead with the treatment.
I was on treatment for about six months. We started seeing all the different changes. My skin became more soft to the touch, my ulcers disappeared and the swelling started to disappear too. And what is better, my pain seems like history; all gone.
Now after four years, my diffuse scleroderma has gone into remission. The ulcers have disappeared completely. The pulmonary fibrosis is there but my lung volume has increased a bit. I am still on oxygen but do not need to be on it twenty-four hours a day. My Raynaud's attacks have slowed down. I keep my GERD under control with some medication and a diet.
The pain is always there, but I have learned to cope with it and to not let anything get in the way of my enjoyment of life. I know my life has changed since I was diagnosed but I am using this change to become a better person and learn to understand other's pain.
I know I will not be able to do what I used to do like swimming in the ocean or running two miles a day, but I have met good loving people in person and on the internet. I have a scleroderma sister who shares the disease, but not the same symptoms because hers are different. I found her on the internet and we keep in touch. She even came to visit me. I have the love of my lovely daughter, family and friends who are always there to encourage me and help me to cope. I feel grateful with every single day that I get to enjoy life.
I am living in Florida now because the weather in New York, where I lived for many years, did not really help much in winter. That is all for now. I will keep you updated.
Email: [email protected]
Story edited 01-04-05
Story posted 01-04-05 SLE
Email address updated 09-26-07 SLE
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Story Editor: Judith Devlin
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