MY EDS Challenge Day 22- Proudest moments in Life with Ehlers Danlos
- May 22, 2021, 12:37 p.m.
I am taking part in #MyEDSChallenge and #MyHSDChallenge with the Ehlers Danlos Society. Since May is EDS awareness month, every day I will be sharing something about myself and my EDS journey to drive further awareness and community.
Day 22-Proudest moments
I will try and give myself more credit instead of constantly being sad about the life I lost, or things that I can no longer do, or be normal. People keep telling me I have come a long way and that they are proud of me so I will share some proud moments.
-Navigating insurance on my own
- Going to countless specialist appointments on my own and going through imaging and procedures and testing to rule things out for 7 years.
-Trying to cope with all of the uncertainty of this disorder mentally.
-For several years, managing relationships, a 30 hour a week job, and a crazy amount of pain.
-I am proud of the co workers, friends and family members who listened to the medical stuff I am going through even if its complicated and hard to understand. For the ones who stood by me when it would have just been a lot easier to leave me behind for a normal life.
-I am proud of myself for trying different treatments and getting to one of the best surgeons in the world for pudendal nerve entrapment.
- For continuing to rule things out post surgery and keep trying to get things on paper.
-Trying my best every day to excercise and do things even if they are small things and having to rest the rest of the day.
-And finally, figuring out my mystery after 7 years. I am 1 in 2,000 people that has hEDS/HSD. (Allthough I am sure its more common than that but many people dont have severe enough symptoms to care). But if I would have givin up, I never would be where I am
music & dogs & wine ⋅ May 22, 2021