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by Shelby S.
My story seems like others but, is very close to me. When I was a child I was the usual hyperactive girl who wanted to wear jeans and t-shirts over a dress. However, around age 12 people started to notice I got hurt A LOT. I always was in some sort of pain, the scratches and scrapes on my body did not seem to heal well, and I had major migraines. We thought it was just from growing up, but it got worse.
Around 15 my kneecaps started to dislocate for no reason. My orthopedist did surgery and we thought that was that. But then it was more headaches, and I was now passing out randomly. We knew I had a heart murmur since birth but now it was worse. Again, still no answers after several doctors’ visits with a few years span.
But then I met my neighbor. She was just like me. We had begun speaking about my problems and she brought up Ehlers Danlos syndrome. I went to a geneticist about a month after speaking with her and, sure enough, I was diagnosed with EDS. This answered so many questions.
After being diagnosed at 19, I was also diagnosed with Arnold Chiari malformation and [ostural orthostatic tachycardia syndrome. I had a reason why I have major migraines and passed out randomly. Finally, I had answers, however, I was put on so much medication and had so many doctors’ appointments that I had no life to live. We had also found out my mother was stealing my medications and making my sister and me sick. It was when she overdosed that I realized I needed to change my life. I went off my medications just to start out fresh again. I made my own appointments, I talked to the doctors myself, explained my side of things. They understood where I was coming from and what my plan was.
I first made sure my heart was fine. I got placed back on my medication for that and given a strict high sodium diet. Then my migraines were next to get under control. I did find out I was not a candidate for surgery but I was having 3-4 different types of migraines. Because I had concerns about some of the prescription medications, my doctor and I decided to treat with an herbal supplement for now. It helps most of the time. But, that’s not my story.
My story is that I am married, however, I am still alone in my world. I have learned to fight for myself. I made my own choices, I live my life the way I want too. No one will get in my way. I perform jobs that no one in my predicament would ever think of doing. I wear 10-30-pound costumes to entertain children and families, I stand on my feet for anywhere of 4 hours to 16 hours a day to make sure a business is running smoothly, I also teach people basic life support to help people they may know. I put my body on the line to live but I came to realize that is what I must do. I also perform these jobs because I feel no one else wants a “medically liable” person working in their office.
My college entrance essay was called, “The color of my stripes”.
And my stripes will never get me down!
Disclaimer: Each story submitted to The Ehlers-Danlos Society for this #myEDS/#myHSD anthology is published "as-is," with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors-and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.
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