It has been quite a while since I've written anything, probably because this is my race blog, and I haven't been able to race for a long time. But we finally know why. And now that we know, we can fight it. I say we because although I have been physically fighting this battle, I have been amazing at the unwavering support of those around me who are helping me fight every step of the way. I can't thank you enough.
On to the diagnosis... last week I finally got the official diagnosis of Ehlers-Danlos Syndrome type III. Since most people have never heard of EDS (including me before all this started) I'll explain it as best I can. EDS is a rare genetic disorder that affects the connective tissues of the body, which acts like the glue holding our body together. So it affects the joints (hyper-mobility, joint pain, and accelerated joint damage), organs (gastrointestinal issues, organ rupture), skin (easy bruising, tearing, elasticity), and circulatory system (veins are lax reducing ability for blood flow) among other things. Different people have different symptoms and issues because of this. So this is the root cause to the issues I've had all my life (like injuries and pain) and most likely why I struggle with dysautonomia, gastroparesis, the recent heart issues, and everything else.
So when talking to the doctor about my future cycling career he was uncertain. There is little research on EDS and every patient responds so differently, and so we will have to see how exercise affects me. He was encouraging in that a lot of EDS patients go through phases of "remission" in which symptoms, especially the dysautonomia which is the biggest obstacle to riding, can subside. But if I find a trend in which intense training makes me more symptomatic then I might have to completely stop. Also, the risk of joint damage is very high, so no crashing! (haha I would definitely be okay with that) and we will have to see how riding wears down on my knees, etc.. So long story short I am going to try my best to overcome this and I am still optimistic about a pro racing future :)
Right now I am functional, making it to school everyday and very slowly building on my activity level and riding. I got my new road bike and it is BEAUTIFUL so I can't wait till when I can finally ride it outside! Collegiate road season is just around the corner and my hope is to "race" in the crits as part of my physical, but mostly mental recovery ;) Heres to hoping for a race report soon!
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| C'mon who can be sick when you get to live here? |
