Story about Mycosis Fungoides , Sjogren.

It's complicated

Jun 15, 2020

Year Condition Began: 2008


I started noticing that I couldn't wear my contact lenses for more than a few hours w/o experiencing discomfort. That was the first time that I had an unexplained symptom.
The dry eyes and constant thirst turned out to be Sjogren's Syndrome, an autoimmune disease that affects mostly women in their fifties, and can also cause joint pain and fatigue. That was in 2008. In 2010, we were on a hike when I noticed a rash on my arms. I thought it might be poison ivy, and got some cream. This rash came and went for many years, and I usually assumed it was some type of allergy or a symptom connected to the Sjogrens. In July 2015, I noticed a lump in my groin. My doctor thought it was an infection and put me on antibiotics. The lump grew and I began to have severe pains in my stomach and back. In September I underwent a biopsy. The pains were so severe that I was hospitalized and put on a fentanyl patch. The results came back in October, Non-Hodgkin's Lymphoma, T- Cell. I was started on chemotherapy, CHOP, and responded well. Interestingly, during the time that I was on chemo, my skin was smooth and rash free. The rash did reappear after I stopped the chemo but was usually controlled by hydrocortisone cream. This past September 2019, the rash returned with a vengeance and was now on my legs and chest as well. In February I had a biopsy done and the results were not in till the end of April- mycosis fungoides.
Since then, I have found a doctor who specializes in the disease, found a medical coach, and began phototherapy. I am trying to figure out how the three conditions are connected and have been told that they are all triggered by stress. The combination of dry eyes, joint pain fatigue, and itchy skin is challenging to deal with.

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