There was no major accident. Growing up I was completely normal healthy kid. I was a Setter on the University of Michigan Victors Volleyball team for multiple years. Then, in 2008, it started becoming more difficult for my hands to go back far enough to properly set the ball. By the time we realized there was an actual issue and I was loosing range of motion in my wrists- we discovered I was loosing range of motion in most of my other extremities as well. No-one could diagnose me. I quickly turned into a mystery diagnosis case. At first they thought it was Eosiniphilic Phasciatis- because my white blood cells were too high. Then they believed it to be Rheumatoid Arthritis- because a lot of the symptoms were similar.They took a complete biopsy of my leg- hoping they would find some answers- it came back normal. They put me on Steroids and a mixture of medications to help with side effects and the new found pain. It was 100% a trial and error process.
"I was taking 4 Lortabs and 2 Tylenol 3s + Codine a day and maintained my 4.0." |
At my worst, I lost 85% of my range of motion in all of my joints except my shoulders and hips. I had elevator keys and special chairs to sit in when I was at school. I wore braces on my hands at night that victims of strokes wear to help stretch out my hands. I could not judge whether I was full or not, because the steroids had me hungry all the time. I became completely dependent on my family for my eating patterns. I began having diabetes-like symptoms. It was at this point that the head of Rheumatology in Children's Hospital at the time Dr. Moore took over my case. She started from scratch; weaning me off of the steroids, and onto Chemotherapy. I did not take the full amount that a cancer patient takes- but I had to self administer my medication. She round-tabled my case with doctors for all types and ages, and it was only then did they begin to think it may be Systemic Scleroderma. Essentially, Systemic Scleroderma is a condition where you skin attaches to your muscles and hardens. It translates to "hardening of the skin." It is rare in adults, and - at the time - unheard of in children. You have a better chance of being struck by lightning than being diagnosed with Systemic Sleroderma.
It didn't take long for my body to realize that the Chemotherapy I was taking was poison, and starting turning me against myself. Nausea took over. If I took my pills, my body would try to throw it up. If I didn't take my pills, I would have sat there nauseous the whole time to continue to prevent me from taking my pills. I would have to trick my body into thinking it was something different. Take it with different drinks- many of which my body rejects to this day. Running out of options and sanity, I switched to the liquid form of medication. That worked for about a week, until my body rejected that as well. I could not turn to pages in my science book that had liquid mercury pictured or anything that looks like honey without my body freaking out. I ran from grocery store isles that sold apple juice and other substances that looked similar. With Systemic Scleroderma, I qualified for Make a Wish because it could be fatal if it moved into my inner organs. My symptoms started to improve, for no reason known reason, and my doctor began weaning me off the Chemotherapy. Once my medication dropped to a specific amount, I began losing weight. My final doses I decided to do injection. By New Years 2010, Dr. Moore deemed me in remission.
It didn't take long for my body to realize that the Chemotherapy I was taking was poison, and starting turning me against myself. Nausea took over. If I took my pills, my body would try to throw it up. If I didn't take my pills, I would have sat there nauseous the whole time to continue to prevent me from taking my pills. I would have to trick my body into thinking it was something different. Take it with different drinks- many of which my body rejects to this day. Running out of options and sanity, I switched to the liquid form of medication. That worked for about a week, until my body rejected that as well. I could not turn to pages in my science book that had liquid mercury pictured or anything that looks like honey without my body freaking out. I ran from grocery store isles that sold apple juice and other substances that looked similar. With Systemic Scleroderma, I qualified for Make a Wish because it could be fatal if it moved into my inner organs. My symptoms started to improve, for no reason known reason, and my doctor began weaning me off the Chemotherapy. Once my medication dropped to a specific amount, I began losing weight. My final doses I decided to do injection. By New Years 2010, Dr. Moore deemed me in remission.
On my final visit with Dr. Moore, she told me that she does not take the credit of my recovery. She believes she may have helped, but my return of health was due to my "perseverance, and an act of god."
Soon after I reached remission, Dr. Moore retired, and I was old enough to be a part of a hospital that was not Children's. I now see Dr. Marie-Claire Maroun out of Harper Hospital. Currently I am taking medication to balance the pain and am receiving Physical Therapy to keep my muscles stretched and attempt to prevent further loss of motion.
It is not easy. The cold and stress are a couple of the important factors that make my condition worse. However, we know what it is now, which puts us in a better position now then when I first showed symptoms in 2008. All I can do is keep fighting, and keep moving forward.
It is not easy. The cold and stress are a couple of the important factors that make my condition worse. However, we know what it is now, which puts us in a better position now then when I first showed symptoms in 2008. All I can do is keep fighting, and keep moving forward.