Convention 2016 and my Life with hEDS (Hypermobile Ehlers Danlos Syndrome). I shared this story publicly, for the first time, after day 1 of the 2016 ZINCON convention. As terrifying as it is to open up about an incurable medical condition, it is also freeing. For those struggling, know that you are not alone. There are many people out there maybe not with similar struggles, but who struggle none-the-less. Be strong. Do not let limitations define you. Here is my story.....
I am a Zebra. No, I haven't gone off the deep end thinking I'm a 4 legged equid, I'm a medical zebra. I'm the one where hoof sounds do not point to a horse. I'm one of the patients Dr. House, would have loved. (And yes my disorders were featured on the show :D) I'm the one who leaves Doctor after Doctor scratching their heads, trying to diagnose me. In the past 10 years, I've been diagnosed with everything from MS to Chrons and a bazillion disorders in between. I have symptoms of all sorts of disorders, and have at some point been treated for them all, but the diagnoses were wrong. In reality, I have several rare, incurable, progressive genetic disorders, starting with Hypermobile Ehlers-Danlos Syndrome.
hEDS, effects ones connective tissue. Your entire body is held together by connective tissue. My connective tissue, doesn't function properly. My joints, organs and organ systems, can all take a hit any day, at any time. When I flare, it's a toss-up as to what will be effected. Having hEDS, POTS, CFS and a myriad of other comorbidities, my body, is not really mine. My joints, dislocate/sublux randomly, my GI system goes haywire just because, I have extreme difficulty maintaining muscle, much less building muscle (not ideal, considering my profession) and I live with crazy bad pain and chronic migraines. Keeping me together, I have knee braces, ankle braces, foot braces, a boot, wrist braces and a back brace. My heart and GI system are monitored periodically, to make sure the connective tissue surrounding them and vascular systems, haven't decided to crap out, which they could do, without notice. Hotmess, table 1, right here. :)
Just like the animal, no two EDS medical zebras are alike. Some EDSers have limited mobility, and some are in wheelchairs. Some, need feeding tubes and others are bed bound. This, is a scary reality. This, could be my future. Every doctors visit, I'm reminded of the fragility of my body. There are days I pick up a coffee cup and dislocate a wrist, others, I step out of bed and there goes a hip. Currently, I have a broken metatarsal. My disorders are unpredictable, relentless and overwhelming. BUT, my disorders do not define me. For all that I have going wrong with my body, there's also a whole lot going right. Everyday is different and everyday I challenge my body and my disorders.
Today, is day 1 of the Zumba convention, and I've danced ALL day. Today, I (mostly) stayed together and smiled through the sweat and the pain. Today, I met one of my Zidols, took a class with one of my favorite ZES, took a master class with another favorite ZES and ran into one of my favorite ZJammers. Today, I met dozen of new people with the same passion for fitness as myself. Today, I challenged my body and pushed beyond my limits. Today, I did not constantly apologize for my shape, and explain my disorders and how I do not metabolize fat well or build muscle. Today, I lived life outside of the norm for EDS'ers. Today, I succeeded. Today, was the perfect example of just how much Zumba has impacted my life. Today, I didn't sit home, focusing on the pain, waiting for my hips to stop subluxing, thinking about wheelchairs and walkers---I didn't play it safe. Today, I danced and wanted the world to watch, because I'm proud of what I've accomplished with this body, my body. Today I danced, learned and grew with thousands of instructors from around the world, all here to improve at the job we love.
Zumba has kept me active, in the face of a disorder trying to take my body. Zumba has kept me strong and mobile and has changed my life. Zumba, has given me a reason to fight against the fate of a wheelchair, and, it has also shown me, that when/if that time comes, they'll still have a place for me in Z Gold. Today, is yet another day I'm reminded of how much I love my job. Today I'm embracing and celebrating the fact that I can walk, dance and be fit. Live, love, laugh, learn.... Zumba :)
The photo above, is with my B1 ZES Tony Witt. Our furnace caught fire days before my training. We were living in a hotel and I had no gym shoes. I emailed Tony our situation and saying I might not make training. Honestly, at the time, I was only taking B1 as a requirement for Zumbini. Little did I know how much that would change. That morning, something clicked. I needed the release, I needed to dance. I borrowed clothes and shoes and headed to my B1. At the end, I was overwhelmed, exhausted, mentally spent, yet exhilarated beyond belief. Tony, lit a fire under me like no other and set me on one of the most challenging and rewarding paths of my life. Never would I have though, with my physical issues, that I'd be where I am today. I am where I'm meant to be. EDS is part of me, but it certainly does not define me. Zumba love! *My story was published in the May 2017 edition of ZLife---check it out under adversity stories!*
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