Apparently, I Am A Zebra

So, there is apparently a saying in medicine that goes like this: "When you hear hoofbeats behind you, don’t expect to see a zebra." 

It means that most of the time, a person has a common diagnosis, not a rare thing going on. Not everything is a Dr. House situation. (Anybody remember that fabulous medical mystery show?)

Except, the Ehrler-Danlos Society explains that sometimes, you are the zebra. 

I had an appointment with a geneticist this week, from a referral placed by my GP last year, and received a diagnosis of Hypermobile Ehrler-Danlos Syndrome (hEDS). Bryce said, "you're kind of racking up these initials," because... PCOS/PMOS, ADHD, hEDS. Sigh. (I mean, but also MSEd (Master's of Education) and NBCT (National Board Certified Teacher). They're not all maladies! 

What is hEDS? A connective tissue disorder where you are hypermobile -- your joints are loose and bendy and you are prone to injuries, migraines, and a host of other issues because connective tissue is literally EVERYWHERE. 

I have always had what my parents called "tinker toy joints." My joints popped in and out (shoulders and elbows in childhood) all the time. I sprained my ankle SO MANY TIMES in childhood and in adulthood. I basically have an area of the attic storage space that is various orthopedic splints and supports and braces. I was born with a dislocated hip that unfortunately wasn't discovered until I was about 9 months old because medical professionals didn't believe my parents when they said something was wrong...so I ended up with surgery to reset both legs and was in a cast from the waist down with a hole for diapers (good gracious) for a while, followed by braces, followed by what seemed like forever in clunky orthopedic shoes (which now I have "stylish" orthopedic shoes). Behold, little baby Jess in her cast: 

Happy riding the "high chair" like a horse

I have all my various falls and slippages and many many unexplained bruises. (Fun fact: both hEDS and ADHD result in you having poor proprioception, or knowing your place in space. Yay!) And, I had two necessary total knee replacements before age 50, which is apparently not the norm. 

My Pilates instructor and both my in-home PT people after the knee replacements questioned if I had hEDS. I am definitely hypermobile. I am definitely a hyperextender and a "bendy body." I did all these things below. 

Image from https://reenvisionpt.com/heds-and-hsd-and-the-role-of-pt/ compiled from the Ehler Danlos Society.

So now, I get to have unlimited physical therapy, and am thrilled to have it in my chart now because apparently my previous colonoscopy experience where the anesthesia didn't work is not uncommon with people with hEDS! The continuing on despite pleas of "I can feel that, ouch, ouch, argh" is NOT common. Grrr. Thankfully the next place I went was phenomenal. 

I feel a sense of relief, because there are so many things that can be explained through hEDS, and MCAS, mast cell activation syndrome. Which is why I am so freaking hivey with such sensitive skin that gets those "exuberant reactions" that I've been plagued with. 

There is a reason for my joint pain. There is a reason I'm klutzy. And, people with hEDS have a high prevalence of ADHD, which was interesting. Not necessarily the other way around, but it was fascinating to see the things that crossed over. 

So there's that. I have new letters. I am a zebra, not a horse. And now I can figure out how to take care of this gumby body as I move through menopause into my older years.