It was the winter of 1982 when I first noticed my nails and fingers turning blue when exposed to the cold. I was twenty-one years old. The cold days in Calcutta are few — just a week or ten days a year — and the temperature does not go below fifteen to eighteen degrees Celsius (approximately sixty degrees Fahrenheit). I just ignored it.
The next winter it happened again, but again I chose to ignore it. A couple of months later in mid-1984, I noticed some white patches on my throat and at the back of my neck. It was uncanny because the patches seemed to be located exactly opposite each other!
Thinking I had leukemia this time, I hit the panic button and visited my general practitioner. That is when I mentioned the blueness of my fingers during the last two winters. After some inquiries, blood tests, and a skin biopsy, the end result was scleroderma with Raynaud's phenomenon. The doctor was very nice and asked if he could speak with my family.
Sadly, my parents had passed away, and an older brother was too busy setting up his own family. The doctor spoke as gently as he could: I had been diagnosed with a rare, incurable illness for which little medication was known to help it. I inquired what caused it, but he said the cause is also unknown, thus, curing it was impossible.
I did not tell anyone about my diagnosis as I was not sure, nor did I understand the seriousness of the illness. I was given many medicines, and told not to touch or try to hold anything cold. One medicine gave me terrible heart palpitations, and it seemed as if my eardrums would burst, so I asked to stop it. But clever me, without telling the doctor, I stopped all allopathic medicines and tried because I was more worried about the white patches than blue fingers!
I had worked as a telephone-cum-telex operator for over nine years, the latter part of which was in an air-conditioned room. My fingers started to swell and become painful. Typing was difficult as a couple of fingers began to bend inward. My friends and colleagues began to notice and asked me about it. I explained my illness the best way I could, but realized I was not getting it across to them.
Meanwhile, the white patches disappeared, never to reappear. All this time I was still on homeopathy. During the late 1980s, some wonderful things happened, and I had a proposal from a believer. Before accepting, I told him about my illness and gave him time to think things over. He said something so touching and lovely then: "We cannot foresee our future, but we can accept our present and let God take control of the rest."
We were married in October 1990 and moved to Bangalore, India. Now in a new state, I needed a new doctor for consultation. I ended up in St. John's Hospital where I underwent some blood tests, an endoscopy, ECG, and another skin biopsy. The result was that the scleroderma and Raynaud's phenomenon had spread far and wide. I was advised to take some medication again, but would not. Steroids were also offered on a trial basis, but I refused.
Then we got the good news that I was expecting a baby. I was told to abort the baby because giving birth would have a serious effect on my illness. All the same, as long as the baby was okay, I was willing to take the risk. So with the help of my gynecologist came our pride and joy on Christmas Eve 1991 by Cesarean section.
When our baby girl was just three months old, my husband changed jobs. It did not work out and he was out of work for a year, during which worry and anxiety took a severe toll on my health. Over the next two years, I lost weight dramatically and was just a bag of bones! Until our baby was over three years old, I did everything for her, as well as the cooking, etc. Soon after that, my ankles started swelling and became so painful I could hardly walk; thus began the shuffling.
Now, almost twenty years since my illness was diagnosed, my condition is like this: I can open my mouth less than two fingers (vertically) wide, I can barely turn my head from side to side, and my shoulders are beginning to get stiff. My elbows are at an angle and I cannot straighten my arms, even if one tries to pull them straight. My wrists do not flex at all. My left hand is closed like a fist; my right hand is partially closed like a claw. Thankfully, my back is straight and my hip joints are okay. My knees and ankles are swollen and painful, and my toes are crooked and bent. As for medication, I only take ibuprofen, which has increased from one to four tablets a day over the years.
I took no other medication from the time I was expecting to the date of this writing. For extreme pain, I apply ointment and keep the area bandaged until I return to my usual painful self. The good part is that my internal organs are okay, the scleroderma has stabilized, and I can still type with the help of two chopsticks.
I can proudly say that I have written this story myself. Better still is my family. Piers, my husband, says he loves me more now (his very words) than when we met and married for the way I manage and cope daily. He helps out with chores before he goes to his office. Persis, our daughter who has never seen me well, helps in any way she can when she returns from school. During the daytime, the maid comes to do the other work and the cooking, leaving me with very little to do.
But the best part is that I believe in miracles and know I will be healed soon. My message is: Have faith. Be strong! Do not give up!
Email: [email protected]
Story posted 3-23-02
Story edited 4-2-02
Story edited 7-28-03 JTD/V1
Story Editor V1: Judith Devlin
|India Scleroderma Support Group
The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!
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