Questions. We often ask question because we’re curious and we want answers. We ask easy questions and we ask difficult questions, and when we get out answers, we’re satisfied, but when we don’t get any answers, we keep digging until we find those answers, even if we have to dig for years. Questions that go unanswered are like a plague, they’re stuck in your mind until they’re solved. And if you’re a really curious persons, questions that go unanswered are sometimes unbearable, because we’re stuck in the moment, we can’t move on until we have our answers.
After the problems with my knees started, it wasn’t long before more problems arose, haunting me, taunting me even. My legs started to hurt completely, it didn’t stay located in my knees and walking for even half an hour hurt, and running in gym class became nearly unbearable. I started experiencing sleep problems, more and more nights were spend awake watching tv, having only a few hours of sleep if I was lucky. I started getting these debilitating migraines that often landed me in the ER. When I’d get one of those migraines, it honestly felt like I was dying, the pain was unimaginable. And I started having stomach problems; I was never a big eater, but for a while I practically ate nothing because of the pain and fullness I felt – I felt like I’d eaten too much every day when I barely ate enough to keep my weight up.
But still, no one could figure out what was wrong and why I kept having all of these problems, they couldn’t seem to connect the dots, it was like a puzzle that didn’t want to be solved. It was an endless road of unanswered questions. A lot of the doctor’s I saw barely examined me, they just brushed off my complaints and send me on my way home. Some doctors told my parents I was faking it for attention. And a few even tried to have my parents commit me to a psychiatric hospital because they believed it was all in my head, and well, that I was crazy. My parents didn’t fall for that, they knew as well as I did that something wasn’t right with my body and until we had answers we wouldn’t stop searching.
I had bad days and good days. Days when I felt like doing nothing but crying because of the pain and because I had no answers, and days where the pain was very manageable and it didn’t bother me as much.
And off course all of this didn’t make my school experience any better. I never was very popular with my classmates, and being sick all the time didn’t make that any better. I was bullied a LOT and it wore heavy on my soul. Sometimes I even wished I hadn’t been born, those were the really bad days.
Years passed and more symptoms came and went. There were a few times when I couldn’t move my arm or even my hands and fingers, everything was completely blocked and it hurt like hell, still, they found nothing visibly wrong, so as usual the doctors kept sending me home, sometimes prescribing something for the pain, simply because it seemed they wanted to get rid of me faster.
When I was 18 or 19, I don’t remember the exact year, I became really tired. For 6 months I could barely get out of bed, my throat hurt and my stomach hurt and I just couldn’t manage to stay awake for longer than an hour. And because of my history, my home physician at the time didn’t even examine me. He didn’t draw blood, he didn’t do anything. He just said I had to be more active (a lot of doctors said that). And worse than the tiredness and stomach and throat pain was the fact that all my other symptoms seemed to flare up, I’d never felt worse. Eventually I wound up in the ER with a high fever and because I was getting dehydrated because I couldn’t keep anything down. Then they said I had Mono. I stayed in the hospital for a week and I felt better with treatment and even though the tiredness stayed for a long time, I was happy that the pain was less.
Off course the Mono wasn’t the cause of my other symptoms, they still went undiagnosed.
When I was about 20, I think, I dislocated my right shoulder several times in a period of a few short weeks, until my shoulder seemed to be completely blocked and it hurt all the time. Again, they took X-rays and MRI’s and even injected color dye to find the problem, but they never found anything.
After nearly a year of constant shoulder pain accompanied by my other problems I finally went to a rheumatologist. And she said my problem lied with my connective tissue and she referred me to a geneticist. She promised I’d finally have my answers and I believed her.
I was nervous about my visit to the geneticist, but more than that I was elated – finally I would have answers and finally they’d be able to cure this pain! It turns out it wasn’t that simple. Did I get answers? Yes. The doctor told me I had Ehlers-Danlos, hypermobility syndrome. I’d never heard of that disease ever and I didn’t understand even half of the doctor’s explanation, all I wanted to know was how we could cure it. That’s when he told me there was no cure for it, there isn’t even a treatment plan for this disease. I basically got told I just had to live with it and deal with is as it progressed, and it would progress fast in the next couple of years, and would get worse.
When I was told there was nothing they could do I felt my heart shatter into a thousand little pieces. I was devastated. All these years searching for an answer, searching for help, and then to hear that, I just felt completely broken and drained. I cried for days after. I didn’t understand any of it. Why me? Why was there no cure or even a treatment for this? Why this disease? They said it was genetic but no one else in my entire family has this disease, as far as I know of, so why me? I could’ve asked the same questions a thousand times, but these were questions that would never get answered, because there simply wasn’t an answer for questions like that.
I simply had to deal with it, right? There was nothing else to be done, except search for ways to ease my pain and make my life a little easier. Which was easier said than done, here I am, almost three years later and I’m still searching for something, anything that can help with the pain, because so far I haven’t found much that helps.
A/N: To comment, go to the box on the bottom where these words are above it: Geef Een Reactie, then write the comment and then click Reactie Plaatsen. Thanks