“Ehlers Danlos Syndrome – my side of the story”

I am a work in progress… here we go. Let me know what you 🤔 think. All feedback welcome 🙏.


LIVING WITH Ehlers-Danlos Syndrome

My Side of the Story

This Isn’t A Pity Story

– – – – X

It’s more like a pathetic romantic comedy, where every thing that could go wrong does go wrong and all of the unexpected happens to the girl who keeps on smiling. A train wreck you can’t take your eyes off of. Because every single time her legs are swept out from under her, she pulls herself up and keeps going. This story is about the how and the why. And eventually the who that kept her going. Because without all of these these things, this little ray of sunshine’s light would have had a hell of time making it through the clouds.

“the most wasted of all days is one without laughter”

-ee cummings


– – – – X

By this age most of us know the story of the ugly duckling. If you don’t, it’s about a mother duck who got a swan egg mixed up with ducklings and when they hatched one looked different and everyone laughed and laughed and called him the “ugly duckling” because he was different than the rest. For me, that’s a little bit how my story started.

I grew up in a large family with lots of children and when I was very young (I was almost the middle child) I stood out because of some strange things I would do. No need to go into detail on that what kid isn’t weird? But it was more of a mother watching over her ducklings; uh-oh that one walks funny out of all of the others looking just fine, let’s take her to a doctor. And that’s where it all began and never ended.

Let me tell you, it’s one thing remembering your school immunizations but it’s a whole different level being told your body needs to be corrected at age 5 or 6. Ballet it was to fix my posture, but eventually the dancing that I loved became the most painful parts of my day. Bone scans, MRIs, days I couldn’t walk for months without reason lead to multiple visits to Children’s Primary Hospital in Seattle. Then one day I’m running cross country, track and field. I played basketball. I was as active as possible but I was eventually pulled from all of those due to heavy bruising and bad respiratory issues. Moms answer? Medicate her. Antidepressants, inhalers, don’t go anywhere without everything! I eventually stopped dancing (biggest regret of my life) and joined the high school swim team in Seattle. The way I could move through water compared to above ground was breathtaking even to me. I could float, twirl around, dive in painlessly. The only thing ever holding me back in the pool was my partial clubfoot on my left leg and my asthma but that didn’t matter, because I felt alive. And then we move states.

Here comes St George, Utah. I cleaned up my act, the desert heat brought my arthritis warmth and my body joy but as I started to grow older my symptoms progressed. My stomach was not happy. And along with the heat came worse migraines than the humidity of Seattle brought. The low amount of doctors down here made it increasingly difficult to get into anyone quickly or if there were even specialists in this town. After years of pain, tests, weight loss, lost jobs, lost friends ( can you really call them a friend though?), diets, Eastern medicine, juice fasts and emotional breakdowns. I got a diagnoses. Which broke me even harder.

What people don’t always realize is sometimes the diagnoses is harder than being sick. Being in pain. You wait 20 years, your lifetime, only to find out that this pain will continue for the rest of your life. Not only will it continue, it will get worse. You have now been labeled. Not only that, because your condition is a case by case basis there aren’t any answers for you anywhere. Your condition can change at any moment. At any time, pulling the rug out from underneath you. But you nod and smile as the doctors and nurse still say everything’s going to be okay. Because they’re right and you know that just because you don’t get to do everything everyone else doesn’t make you a bad person. And because you’ve seen such sad this is your opportunity to show people any good that is left. And because your not an ugly duckling, your a swan and always were and always will be.

“stay close to the people who make you feel like sunshine”



– – – – X

So to the point. My diagnoses is Ehlers-Danlos Syndrome. Click on the link to get into the nitty gritty of it. Because everyone’s conditions are so different, I really only can speak for myself and my own experiences, but in doing so hope to spread awareness and bring compassion to everyone in the community.



I’d love to forget about you. Btw when a dr says taking a port a cath out doesn’t hurt…. uh it flipping HURTS. FOR FOREVER. Oh and I got braids for easy maintenance. Love them! What I don’t love is they don’t give you plastic big take home cups anymore. The easiest way to stay hydrated is a fun cup so thanks for taking that away from me IHC haha.


You started off easy …. port-a-cath placement and after months of IV therapy and dead shallow veins, this was the option…. until the port ended up being the most painful thing to ever touch a nerve in my body. Moving down the length of my right arm, losing feeling in my hand. Losing my grasp. Dropping things. How can something so helpful also make you so miserable?