Many people already know the premise behind the reasoning behind calling yourself a Zebra. In the medical community it is often said, “If you hear hoof beats, think horses not zebras”. The idea behind that is that doctors, nurses, and other medical professionals shouldn’t believe that they have some rare case on their hand before first establishing that what they have isn’t the case of something common. For most people that works but for others, it doesn’t. I’m obviously apart of that group. I have created this blog in order to vent to someone other than my poor fiance and family. I have an AV Malformation in my uterus, binge eating disorder, and Ehlers Danlos syndrome. There are around 100 written cases about av malformations in the uterus, only 1-5% of the population has binge eating disorder, and I still have to explain to medical professionals what Ehlers Danlos is. I feel like whenever I walk into a doctors office and explain what is wrong with me they are doing everything in their power not to roll their eyes at me. I have a myriad of other physical maladies but binge eating and EDS (abbreviation for Ehlers Danlos) are my biggest pitfalls.
I was only recently diagnosed with EDS. While giving the diagnosis the doctor managed to get through to me that he didn’t think I should continue to work out. This was before he gave the cortisone shots to me in my hips. But I hate change, and me changing my exercise habits is a big deal to me. I found exercise around 4 years ago. Since I found it I have become obsessed with daily short runs (3 miles), weight lifting, and deep yoga stretches. Since starting this variety of exercises I have experienced a drastic decline in my joint stability. I got hip surgery at the height of my obsession around 2.5 years ago. Since then my knees have started swelling after minor runs. Along with the swelling they’ve started to dislocate, along with my shoulders, hips and wrists. The pain in a constant dull throb in the back of my brain. I thought it was just aging, it may sound strange but thats what everyone always brushed it off as. Or they said it was just me pulling muscles or putting more strain on myself, that everything was normal. Finally a friend listened, and directed me to EDS. I looked it up and after much investigation decided I believed that I had it. After wasting time for about 6 months I finally went to the rheumatologist who confirmed what I already knew. I had hypermobile EDS. He pressed that he thought I should cease certain movements and that I should see an orthopedic surgeon for specifically my shoulders. They dislocate, on will, and rather painlessly. But have lost a great deal of mobility.
Now I am left with the dilemma, do I stop doing something that I love or push through the pain? Pushing through can cause me to irritate the EDS more. Dislocations will become more frequent as I continue to tear my connective tissues and make my joints weaker. The pain will become unbearable and I may speed up the progress of osteoporosis, which often comes early for an EDS sufferer. I have thought of picking up new hobbies; sketching, biking, even this blog. But all have fallen short. I worry that I don’t have the discipline now-a-days to form a new habit. I do plan on picking up bike riding, and perhaps some light, low impact weight training exercises with a focus on finding a form that doesn’t cause my joints to hyper extend or dislocate. And I hope to keep this blog updated on that progress, or lack there of.
I ended up spending my entire first blogpost talking about EDS, and its not even the thing I am suffering with most tonight, but the binge eating. We’ll have to save it for another day. Perhaps it will motivate me to share tomorrow.
Goodnight.
No comments:
Post a Comment