Braver each year

By Brittney, Ehlers-Danlos syndrome type 4, United States, February 25, 2021

Braver each year

Each year I've learned more about living with a illlness that could end fatal , learned just to do the most enjoyable and normal things but yet prepare for the totally unexpected. Learned to always have that GO bag on hand for totally unplanned and unexpected admissions , always carry Med lists since this last time we needed an ambulance (only the second time ever) , and am amazingly better at accepting my medical aides well tools , before I was totally ashamed and embarrassed by them (I mean I'm only 31 and my home at one point looked like a senior center I'll explain more in a bit) but now I see there all a part of me and something allowing me to live the BEST me! 

the last year has been scary and NOT just because of the world we're currently in. Everyone with EDS knows in time our bodies will deteriorate so we live our best zebra life , I have and do I cheerlead and go out with my husband , and was returning from an anniversary trip (1year wedding) when the incident happened thankfully to. I was standing talking to his mother one moment and seconds later wasn't standing I was on the ground looking up and the car , yes look up and , my leg had given out on me , and I was now on the pavement below , I destroyed my leg breaking the bone , over stretching the Achilles and tearing both lateral ligaments. As a cheerleader the injury catastrophic as rare warrior even more horrific , possible walking ending. Normal person recovery 10-12 weeks , mine , well it happen July 1,2020 and it's now February 2021 and I'm not healed with a estimate of another few months PT so we'll see , and one lateral ankle reconstruction with anchors later. I Now walk with a walker , have a medic alert , knee scooter and the shower chair (right after surgery we had the wheelchair and camode) and lastly my trusty cane. Post surgery I ended up critically ill near septic with a bowel obstruction , it was a scary long road back. 

It's been a reminder that life with EDS is a hard unpredicted challenging road BUT rewarding to. I'm still here . I can keep showing the world zebras have more to offer and were out there and my fight is FAR from done ans I CANT wait to see what the remainder of 2021 brings me 


*Find others with Ehlers-Danlos syndrome on RareConnect, the online platform for people affected by rare diseases

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