I finally have a diagnosis. Well, not just one. I am starting a collection of alphabet letters to see how many I can get. I'll start from the beginning of my medical story.
When I was a kid I knew there had to be something different with me. I was never able to do everything that everyone else did even when I tried my hardest. For physical things, I eventually stopped trying. I was the life of show and tell, I could bend extra and do things that others couldn't. They were "party tricks." And every trick I do damages my body even more. I had days where I was sick to my stomach, nauseous, stomach cramps, dizzy, lightheaded, or felt like I would pass out. Everytime I made a list and took to my doctor it was dismissed as either related to my period (yay being a female...not), my blood pressure got to low (as it just happens), or I was sick with a cold. Then there was the feeling that you weren't believed for one reason or another. As I got older the excuses from doctors for not finding things were that I was fat/overweight (and I would get another damn lecture) or I couldn't possibly have the issues I said I did.
At 13 my back started hurting and I couldn't find relief. An xray showed that I had osteoarthritis in my spine starting from the base of my head down to between my shoulder blades. I was sent to physical therapy to strengthen my back and help me deal with the pain. The PT was a nice guy, very understanding. He examined me and told me I was hypermobile in every joint and it would continue to be bother be, but I'll be fine. I was so close that day to a diagnosis. I continued to have issues spraining ankles, tearing tendons, and having PT.
Fast forward to college.
I would get sick for a few months were I dreaded eating and I would get sick everytime. Then I would have a few months of being okay. I knew that if I made it through the sick times it would get better and I would be fine. That ended up how I treated everything, if I wait, it'll get better.
I went out with a few of my friends to a concert in Charlotte, NC. We saw Saosin, UnderOath, and Devil Wears Prada. It was a great concert. I moshed for the first time. And that started the downhill of my shoulder. I used to like to stand with my arms crosses behind my back, holding my elbows. I was standing like this waiting for the concert. It was hot and I was starting to feel a little...overwhelmed? Not sure that is the right feeling, but we will go with it. So the first band starts and everyone rushed the stage. I went from being 10-15 people from stage to being 3. The crowd moved to the right then the left, back, and then forward. It was fun and a new experience. Honestly I loved it and hated it. There was no moving, you were a product of the crowd. You had no control. Then we fell. The entire right side of the mosh crowd fell to the floor. My arms where still behind my back and people where still moshing. A couple guys built a wall in front of us with themselves and then pulled us up one at a time. My right arm was pulled and I was able to stand up. I worked my way out of the crowd, hot, tired, and my arm slightly numb. I got to the back with my other friends and just chilled. The next morning I was sore, but I figured it was just from doing so much. We went out to breakfast and I had a hard time lifting my drink with my right arm. That issues continued on and off for months before I went to the doctor. I actually went to the doctor for another issue and as a side said my shoulder hurt. Two rounds of PT, lots of wearing a sling, I had what would be my first shoulder surgery. I had torn my right labrum. I'm assuming it came from that fall at the concert, but it could easily have come from years of softball. They put in two anchors, I did more PT and went on my way. A few years later I ended up at the ER for what I was told was gastritis, but ended up a few years later being my gallbladder being an asshole. I had that removed. I also had some issues with blood clots (thankfully all superficial.) It became a running joke that on holidays it was time to go to the ER. And sadly that lasted a long time. We always joke that it was a new year, I would have a new problem. I probably had at least 2-3 ER visits a year for something, plus 2-3 doctor appointments a month. Little did I know that would be small amounts.
I was so lucky that I found a great doctor. She believes me when I say something hurts, she wants to help me find an answer, and she doesn't give me lectures on my weight. She offers help, but I mean come on, I know I'm fat. I don't need to be told. She sent me to several specialists, some were helpful, some like the Vein Specialists in Asheville were assholes. The doctor there told me I was fat, gave me a lecture, and then told me I would be fine if I lost weight. Definitely not a doctor I ever back to. I was then sent to a Geneticist. I had a feeling at that point that I might have a certain disorder. As soon as I was looked at it was confirmed, I had Ehlers-Danlos Syndrome. EDS is an invisible illness that causes a lot of issues. In short (as I will write a blog post just on EDS itself) everything in my body with collagen can be faulty. From my organs, my skin, my eyes, my joints, everything. Absolutely Everything. Great. I have a name to the disorder but now what? The next adventure would be learning this "zebra" disorder and then what else is wrong with me.
Zebra disorders are stated as being Zebras because doctors are taught when they hear hoof beats to think about horses, not the rare things like Zebras. So Hi, I'm a Zebra!
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