GOOD DOCTOR IS DIFFICULT TO FIND.
My disease started way back in 2009. My hands had swelling in them. I went to a rheumatologist, but no concrete diagnosis was made about the disease. Finding no improvement in my swelling, I switched to homeopathy. This didn’t help either. I suffered for about 2 years with my health deteriorating every month. Darkening of skin, fatigue, fever, acid reflux, cough made my life hell. I went to my GP who was a very good one. Finally, he could diagnose the disease. I nor anyone in my family had heard of it. SCLERODERMA. Since I had never heard of it, I couldn’t think of how dreadful it might be. But I was scared. Because lot of irreversible damage was already done. My lungs were affected, acid reflux was bad. Above all, I had no clue of how to go about healing myself nor did my doctor.
A family friend suggested some lady rheumatologist. She was HOD of rheumatology department in a medical college. She used to show me photos of how my hands will become, how ulcers would occur. My visit to her used to make me sadder and ill rather than healing. Acid reflux had become so bad that I couldn’t sleep properly. With no knowledge of a wedge pillow, many nights were spend dozing in a chair.
Someone else suggested the number one rheumatologist in Mumbai. Hoping to get some solution I went to him. With proper medications, there was slight improvement in health. Although, fever persisted leading to weakness and fatigue. After sometime, the health wasn’t showing much improvement leading to more frustration.
My parents took me to CMC, Vellore. It is a very big hospital and very renowned one with expert specialist in almost every field. They detected deficiency in Vitamin D3 and B12 levels. With medications for these, my health improved drastically. It surprised us that why no doctor in Mumbai ever detected these deficiencies. They put me on minimal dosage of steroid. For about 2 years , my health was going fine because of their medicines. By this time, I had managed to find a dealer who provided bed wedge pillow. After a long time, I slept peacefully with no fear of reflux.
But going to Vellore was expensive and it became duty of my parents to accompany me. They were also growing old and these trips were tiresome for them too. So back to Mumbai rheumatologist, with ulcers occurring in my feet on ankle and heels. The pain was horrible yet my doctor didn’t suggest any pain killer. I was supposed to bear the pain. The treatment for ulcers were given but without any painkiller. He asked me to get rituximab infusion, but refused to take any kind of responsibility.
So we again changed doctor who had previously given this infusion. No proper communication was given about the treatment. With ulcers on rise, my life had become hell. Pandemic struck. This doctor refused to give online treatment. With everything in lockdown, I felt I have slipped into a hell hole and will never be able to come out,
And when I lost every hope, I met my saviour. For me he was god sent. He specialised in treatment of scleroderma. He fervently went about treating my ulcers, acid reflux and ILD. For the first time, I was told to take pain killers for my ulcers. It was such a big relief from the killing pain. He saved my toe from getting gangrene. My search for a good doctor ended here.
I also came to know about the support group for scleroderma. The group has now become like a second family to me since they know and understand my pains and sufferings My family ,my in-laws, my parents, my sister and my hubby have been a big support to me.
But this disease taught me many things in life. I have learnt to be more patient, taking one day at a time. Health is wealth is very true. Everything in life become meaningless if you don’t have good health. And above all, I have become empathetic in life, making me a better person.