Ironically enough, the gym is actually how I knew there was something wrong. Towards the end of 2019, I noticed my hands were getting really stiff and swollen, and my grip strength was going away. When I was lifting, I felt that something was not right. My feet started to get really swollen, and then my knees became quite stiff.
The whole situation was just really crazy to me because I was always a very physically active person. Seeing my body reacting like that, I knew something was wrong. My now ex-wife, my wife at the time, was a registered nurse, and she encouraged me to go get my symptoms checked out by a doctor.
I had probably two or three years’ worth of appointments in about only six months, had almost 15 different blood tests for various different conditions, and got prescribed the all the wrong medications as I was misdiagnosed with different types of rheumatoid or psoriatic arthritis – or even a combination of the two. I was given methotrexate and steroids as a sort of Hail Mary.
For the final test, the doctor told me that if this comes back negative, which it almost always does, go somewhere else. A few days later, I got a phone call. It turns out I was actually positive for the Scl-70 antibody, meaning that I had systemic scleroderma.
Ultimately, I had to switch doctors either way, and now I have a doctor who is actually the head of Penn’s Rheumatology Department (Dr. Peter Merkel), who specializes in scleroderma. He actually saved my life, because I almost died of renal failure literally a month later, on November 3rd. As it turns out, methotrexate and steroids can greatly complicate the condition of scleroderma. Knowing of that negligence to prescribe me those drugs without even considering that it could have negatively impacted me if I had scleroderma – it was shocking.
I was at Penn for four and a half days because I was at the precipice of complete renal crisis. Every day, there was at least one, if not two doctors, residents, or fellows observing me and asking me questions.
The coolest person that came was actually on her last round of clinicals. She did the skin score and was checking stuff out, because I have raised scale-like marks in certain parts, which she was looking at. We were just talking when she asked, “Is it okay if I tell my professor about you?” I said that she could, but asked why, to which she said that in medical school they’re taught that if scleroderma ever comes up on a test, it’s never you; the test almost never comes back as showing the diffuse cutaneous form that I have. I realized that was why they missed it for so long and took so much time to diagnose me correctly – it’s something they need to change.
After that, I had my blood pressure checked twice a day for almost a year straight, went through hypertensive shock seven times from January 2022 til the end of April 2022, and woke up blind a few times until my blood pressure normalized — almost died a few times there. They thought it was Addison’s because of the kidneys, but part of it was actually from the stress of going through a divorce. My body couldn’t keep up, and my hormone levels were fluctuating significantly. I would just literally eat straight salt and just chug water until my blood pressure would come up. It was crazy.
Now, I’ve improved a lot. I went from taking 33 pills a day down to four. Considering I have the terminal kind of scleroderma, the doctors don’t really know how I’m doing so well. Obviously, it’s a blessing because my lungs, heart, kidneys, hands, feet are all affected.
Despite that, I went from barely being able to barely get off the floor last April to going to the gym every day once again. They have no idea how it’s possible. They’ve said, “Hey, whatever you’re doing, just don’t stop.”