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Loved for Who I Am
By Tiffany Garner
Life with scleroderma started about four years ago. I started to feel weak and tired all the time. It was hard to get up to go to school. My mom would have to help me sit up in bed. All of my joints and muscles ached. One morning I realized I could not straighten my middle finger. I tried but nothing made it better. My mom made me an appointment with an orthopedic doctor after two weeks. The day I was supposed to go, I woke up and was able to straighten my finger, but not my elbow, which hurt really badly. Later that day, the doctor did X-rays but couldn’t give me an explanation for my pains. They told me to go to my pediatrician. My pediatrician did blood work and said that my immune system (which keeps you healthy) wasn’t normal.
I made an appointment to see a specialist at Duke University two months later. My mom and dad were worried and the pains were getting worse all the time. With prayer and the help of a great friend, we did not have to wait two months to see a specialist. We drove to the Medical University of South Carolina (MUSC) in Charleston, S.C., (instead of having to wait all that time). There, I was finally diagnosed with MCTD, an abbreviation for Mixed Connective Tissue Disease and Scleroderma, both of which affect the thickness of the skin and at times damage internal organs. I also was diagnosed with Raynaud’s Phenomenon, a disease that makes your arteries constrict causing hands, feet, nose, and lips to hurt because the blood isn’t fl owing into them. As a result, simple movements can often be painful for me. It is very painful when I get cold, so I have to wear gloves a lot.
Thankfully, I have great doctors helping me. One of my doctors, Dr. Silver, is a Pediatric Rheumatologist. He is very nice and gentle. I also have another doctor. Her name is Dr. Hant. She is also very gentle. The medications I have been prescribed are Prednisone (a steroid to help with my appetite and muscle pain), Norvasc (to help with blood circulation), and Plaquenil (to help with inflammation).
Nowadays, I have to go every three months to MUSC to have my blood taken. When I first started going they gave me a breathing test. The first one I took was good. I only have to take that test once a year. This past June was my fourth year. They took me off the Prednisone after that year and I am doing well without it. I am no longer on the Norvasc, because I couldn’t see a big difference while I was on it. The Prednisone made me gain 11 lbs. I lost it a lot quicker than I gained it, though. Since some of the medications started to bother my stomach, they put me on Zantac. I am also taking Meloxicam for pain.
All in all, I have my good days and bad days but my medications do help. I know I am not like regular kids my age. I still tire easily but my doctors tell me just to do what I can. Being a member of my local scleroderma support group has helped me to understand that I am not alone in this illness.
I know now that I’m not alone. In fact, one year in school I had a teacher that could relate to me because she has Raynaud’s Phenomenon too. All of my friends and family accept me for who I am. They don’t put me down for my sickness. And that really makes me feel good inside. |
