I first presented with symptoms of Raynaud’s phenomenon in about 2000, but I didn’t even know what that was. For a few years after that, I went through bouts of severe colds and a cough I couldn’t shake. My doctor tried different medications and ran the normal tests. Finally, in February of 2005, I was referred to a pulmonologist who ran a battery of tests. I had a full lung biopsy and was diagnosed with usual interstitial pneumonia. From there, I had several blood tests ordered by a rheumatologist, who then diagnosed scleroderma with lung involvement.
My biggest daily challenge with scleroderma is keeping my hands warm and ulcer-free from Raynaud’s. In 2016 and 2017, I had sympathectomies on both hands [a digital sympathectomy is a procedure in which a surgeon cuts the tiny nerves to the arteries of the fingers]. But I am still experiencing digital ulcers that cause a lot of discomfort and pain. I also have to watch what I eat due to GERD [Gastroesophageal Reflux Disease], fight the constant fatigue, and remember to take all my medications (which is now up to 21 pills a day, plus an inhaler and nasal spray).
Recently, I received an award for working 3,000 volunteer hours at my local children’s hospital. It has taken me eight years to get to this point, but I kept going even after surgeries kept me out for a while. I am proud that even though I don’t always feel up to it, I have been able to keep going and have enjoyed working with the children and their families.