When I heard the words, “You have Lupus,” I didn’t know the magnitude of how much my life was going to be tested.
It started in 1980 when rashes and unexplained fevers plagued my life. Seeing doctors about my symptoms led to solutions that were only temporary.
Fifteen years later, I started suffering from severe joint and lower back pain which led to the diagnosis of Systemic Lupus and Lupus Nephritis. I quickly learned that I was in a small percentage of male Lupus patients. From being a fairly healthy person, I ended up taking some 30 different medications every day. Each medication was for an organ that tested as abnormal and I was also given more mediation for the side effects. Yet more medication was given due to the loss of important nutrients.
This is what Lupus can bring to a person: a port installation, multiple organ biopsies, full knee and shoulder replacements, port insertion for peritoneal dialysis, kidney transplant, bone marrow stem cell transplant, gallbladder removal and removal of potential cancer masses. In addition to Lupus, I was diagnosed with several more autoimmune diseases including rheumatoid arthritis, Sjogren’s Syndrome and mixed connective tissue disease.
In 2019, doctors found a brain disease that has no diagnosis because of the particular patterns. This retired me from my career and I had to seek a new venture. While I would have welcomed more support from my doctors regarding this part of my life, this was a process I dealt with myself. It was hard to leave my career in automotive repair. Throughout the years, I fought to go back to work. It was hard to accept that I couldn’t.
My new venture is my own organization, Male Lupus Warriors Corp. I want to bring to the Lupus and autoimmune disease community the support from a man living with Lupus, and how self care, medicine and support helped me through the years.
I encourage patients to build a relationship with their doctors, and for doctors to get to know their patients as people. I had a very good relationship with my rheumatologist, who was with me for 24 years. She knew me well and was involved with everything regarding my health, even if it wasn’t not related to rheumatology.
My credo, “Turning My Pain into Power,” has helped me to help others gain the confidence they need to help with that first step of advocating for themselves, trusting their doctors and being proactive when it comes to living a better and healthier lifestyle.
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