August 22, 2005 was the worst day of my life. I can remember it like it was yesterday. But at the same time, I don’t remember any of it. I was laying on the sanitary paper covering the padded table in the rheumatology/immunology department at St. Louis Children’s Hospital, with tears rolling down my face, due to pain, anxiety, and fear. My mom was sitting in the chair across from me, more nervous than I’ve ever seen her. She knew more than I did; she had secrets that were kept from me, I think for my own protection. Doctor French walked into the tiny, child decorated room, and started to do a physical test. I could not lift my legs against gravity. I could not raise my arms above my head. I tried so hard, harder than I have at anything in my entire life. I just wanted to see my extremities move. My legs started shaking, due to my tremendous effort. Everyone in the room was shocked. Then, the bomb was dropped. I was then informed that I had a rare autoimmune disease, called Juvenile Dermatomyositis. I would immediately start a high dosage of oral prednisone, along with other various medications.
It has almost been two years since my diagnoses. Since that awful day, I have been on and off steroids, in and out of the hospital uncountable times, and even in the Farmington, St. Charles, and Wood River newspapers to spread awareness. Unfortunately, the earlier the diagnoses, the sooner remission is possible. I am currently doing monthly chemotherapy treatments as my last resort. In the next six months, I do not know where I’ll be. This disease affects roughly 5,000 children in the United States, and causes major problems in the daily life of those who suffer. Dermatomyositis is a difficult disease to live through, due to the emotional and physical effects.
Juvenile Dermatomyositis is group within myositis, in layman’s terms, inflammation of the muscles. However, Dermatomyositis attacks almost every system of the body, causing extreme fatigue, excruciating pain in the muscles, and an evident rash, usually bright red or deep purple, covering all areas of the body. Along with the obvious features of this disease, there are also other possible complications that can occur: swallowing, digestive, lung, and heart problems, vasculitic ulcers which are “holes in the tissue surrounding an inflamed blood vessel,” calcinosis, meaning “small lumps of calcium that form under the skin,” and Gottron’s Papules, known as “small, whitish bumps that appear on fingers which look like blisters” (Bickal).
Before I was diagnosed, I was an average teenager. I enjoyed playing softball, which I’ve been playing since I was five. I loved keeping a tan all year round because I looked so much better with color, as does everyone. I wasn’t very interested in school, but I was always an honor roll student. However, after getting sick, I was unable to participate in my senior year softball season, which truly crushed me. It was suppose to be the season of a lifetime. I am no longer able to “soak up the sun” because my rash is brought out by sunlight. I felt since I was missing so much school, I should try a lot harder, and school became the only thing that I felt proud of.
Being thrown into this life-altering situation has caused a lot of mixed emotions. At the beginning, I thought that I could pretend that I was the same. I thought that if I didn’t tell anyone that I was sick, then it wouldn’t be true. I still feel this way sometimes; only a few people that I have met at Mineral Area are aware of my illness. When I first found out about my diagnosis, I immediately told my best friend, Kate, and that was it. It took me a while to tell others, and eventually the word got around my small high school. Since I had a rash all over my face, people started to question my disease. My friend, Kayla, told me that she was in the library one day, and someone went up to her and said, “Lyndsie needs to learn how to do her make up.” Upset by the comment, Kayla went off on her, and told her not to talk about people when they didn’t know that persons situation.
I know that sometimes people cannot help but stare. I, too, have the tendency to
stare at things that are unusual. However, it feels completely different when
you are the one being observed, like an animal in a cage. Even when I am walking
by someone in the hallways at school, I get this particular look; a look that is
hard to be described, but very noticeable. It’s not in my eyes; it’s not a
friendly smile. It’s one of those looks, like trying to figure out what is
wrong. One day, I was in the bookstore and the cashier tried to subtly glance at
me. After a few minutes, she told me that I looked sick; she said my face was
awfully red, and tried to give me her own personal medical advice. She continued
on by self diagnosing me, and I just stood there and nodded. This whole
situation really bothered me, but I cannot help ignorance. However, I do know
that she thought that she was helping, but it just added to the list that causes
an emotional breakdown.
Dermatomyositis has greatly affected my life: negatively, and in a strange, yet
positive way. I feel as if I am no long the same person I was two years ago, and
I miss myself. However, I think being in this situation has giving me empathy
towards others and has helped me decide what I want to do with the rest of my
life. My ultimate life goal is to become a nurse practitioner in pediatric
rheumatology. I want to use my disease to help others get through tough times
because Dermatomyositis is a difficult disease to live through, due to the
emotional and physical effects.