I went from active to mostly bed ridden very quickly.
February 2012 after work I was lifting my hand weights. My fingers turned ghost white. What's this I wondered? I lifted them several times in shock with this strange happening. My wife looked up possible reasons for this. She found it might be Raynauds. I ignored it. I went to work the next day and my fingers were swollen. I was no longer able to take any of my clients bowling. My fingers continued to be swollen day and night. I continued to go to work, but daily strange things were happening. While playing racket ball with a client, I found it difficult to swing the racket, until one day I was no longer able. On a walk with a client another day I had to find a large stick to help me walk. On a walk with staff a couple days later I returned with the back of my hands swollen and purple. This condition went away after about 10 minutes. At that point I was afraid of what was happening. I went to the doctor on March 8. The doctor was unsure what was happening but thought I might have Raynauds on my hands, but no comment to anything else I said. He sent me to a rheumatologist. The rheumatologist sent me for blood tests. He could not find anything. Finally, since he could not identify what was happening he spoke with his colleague who immediately said I have limited scleroderma. I was then sent to a specialist at UCSF who corrected the diagnosis to diffuse scleroderma in August 2012. By Christmas, my walking was slower, my muscles were weaker, my ability to bend was becoming a little difficult. I was always cold and frustration was mounting. By early 2013, I was no longer able to bend, sit in low chairs, walk without a cane, take a bath, sit for more than 1.5 hours, sleep for more than 2 hours and play the piano because of the now clawed hands. My knees were bent and I could not reach my arms all the way up. I went from 214 lbs to 135 lbs. My internal organs were good, thank goodness. Throughout 2013 I was mostly bed ridden and my wife had to take care of nearly everything. At this point instead of methotrexate I was given cellcept and iron supplement. I was also given omeprazole. In 2014, I ended up with Bronchitis and ended up in the hospital for A fib. I was informed that there is a slight concern in my heart, but nothing significant, but was given a mild heart pill. To date I still can not bend, or walk long distance, without a walker, or do most things, but I have experienced some significant improvements. I was able to take a standing shower, drive my vehicle and do some errands. I fight the disease and will not let it take control. I am on permanent disability and can not work, but I maintain hope that a cure will be found. I say, Never give up!
- Patients & Newly Diagnosed
- Healthcare Professionals