I will never leave the battle!
In January 2006 the pain in my feet, while lying down, in the night started. Gradually it became so worse that I used to cry due to pain every night. I had to tighten my feet with the ropes to stop the pain. Then I decided to go a GP, who diagnosed me with high Uric Acid in the blood and started the treatment. He advised me to stop taking high protein diets, like pulses and dairy products. Neither this nor the medicines helped me at all. The pain continued to make me cry every night. After 18 months of no improvement in the pain, my GP advised me to go to a rheumatologist, which I ignored for another 18 months and stopped all the treatment. I started taking pain killers very often, whenever the pain was unbearable. I had another problem. Besides acute pain, fingers in my hands used to turn blue, white and red in cold weather. I could not touch cold water as it caused sharp pain in my hands.
In September 2009, after much suffering for 3 years I finally decided to meet the rheumatologist in the same hospital where my GP used to practice. After hearing my symptoms he straight away diagnosed me with scleroderma and Raynaud’s phenomena. To be doubly sure he suggested few blood tests which came positive and my treatment started. After a year or so I started having dry cough while lying down, which was diagnosed as Interstitial Lung Disease (ILD). I had to consult a pulmonologist (as advised by my rheumatologist) who suggested PFT to be done annually and to take 2 puffs of inhaler twice a day. My voice was becoming hoarse and I had to clear my throat time to time. I went to the ENT specialist who diagnosed it as Laryngopharyngeal Reflux Disease (LPRD) and the medicines for acid reflux also started. I want to add here that I have had open heart surgery for Mitral Valve Regurgitation (MVR) in April 2001. Also I was diagnosed with Bipolar Mood Disorder in August 2012. I was having acute depression despite of bipolar medicines, so my psychiatrist suggested me to consult an endocrinologist for thyroid imbalance problem. When I got my TSH level checked, it indicated Hypothyroidism. It added one more medicine and one more specialist doctor in my list.
My eyes started giving me trouble. I was already using spectacles since 2006. But the sight became weaker over the years. I had to start using progressive lenses. My eyes started showing redness and dryness as if few sand particles are inside. I consulted 2-3 ophthalmologists 2 years back but the treatment is not showing results. I am again going to consult an eye specialist who deals with Sjogren’s (as suggested by my rheumatologist). Another specialist is going to be added in my list of doctors. It has been now 6 years, since my treatment started. I am in contact with 7 specialist doctors. I have to take regular medicines for Scleroderma, ILD, LPRD, heart, bipolar, hypothyroidism and Sjogren’s. Regular tests (monthly, quarterly, annually) are done to keep an eye on my health conditions and side effects of the medicines. Scleroderma seems to have been in control. Hopefully, the progression of the disease has stopped. The medicines are minimum (I insist every time I go to the doctor to keep the medicines on the minimum, Nevertheless, I have to take 12 tablets daily plus 3 tea spoon of syrup and 2 puffs of inhaler twice a day and 2 drops of eye drop 4 times a day). I am a fighter. Though the opponent is much stronger than me and the weapons I have, are not good enough to kill him, I will never leave the battle. I have the full support of my family, friends and a team of doctors in the fight against this dreadful disease. I am sure that some day we will find a cure.