Bring Me My Tricycle

I’ve recently been made aware that sharing my adventures in Ehlers Danlos Syndrome (EDS) has helped some folks who are on the same journey. Although my old blogger site has been deleted I managed to unearth some things I wrote via Band Back Together. So here it is , 10 minutes of your life you’ll never get back hahaha!!!

No it’s not contagious, and no you don’t need a cream for it. Because I’m lazy I’m going to go ahead and copy & paste an explanation of what Ehlers-Danlos is from The Ehlers-Danlos National Foundation:

“Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles and ligaments. The fragile skin and unstable joints found in EDS are the result of faulty collagen. Collagen is a protein, which acts as a “glue” in the body, adding strength and elasticity to connective tissue.”

Ehlers Danlos could often be found showcased at the early circus shows. *Not all EDS involves stretchy skin

Ehlers Danlos could often be found showcased at the early circus shows. *Not all EDS involves stretchy skin

Hope you enjoyed that as much as I did. In layman’s terms, I have super loose joints. Instead of my bones being nice and snug in their wee sockets, mine sorta float, sometimes getting dislodged (subluxation). This makes things like walking not an option. My body is literally coming unglued, which is quite exhausting and painful.There are several different types of Ehlers-Danlos.

I was dubbed ‘hypermobile,’ an entertaining name not good for much else…except daily pain and embarrassing situations. Like being lifted out of your work chair by paramedics because you’re literally ‘stuck’ in the sitting position and can’t get up. Yeah, not embarrassing at all.

I have a plethora of surgeries that glitter up my past medical history, except the scarring left behind is quite heinous. It’s pretty bad when your OB/GYN takes one look at your c-section scar and goes, ‘Oh, we can fix that’ nice.

As I’ve always said, normal doesn’t apply to me. I’ve had a hell of a time finding doctors that listen to me and stop categorizing me as a ‘drug seeker’ or ‘hypocondriac.’ Listen assface, I’d like to be able to carry my baby upstairs without worrying that my hips won’t unhinge and we’ll fall to our death. Or I’d like to not wonder if I’ll be able to get out of my chair at work without getting stuck and having to sit on a bed pan in the ER for the next 8 hours because I can’t get up.

just a small reference for hypermobility

just a small reference for hypermobility

Always listen to your body, you won’t be wrong.

Your doctor certainly won’t know how you’re feeling because that doctor is not the one going through it. I had to go through a myriad of doctors who thought they were God because they looked at me – a young, healthy, active young lady – and could not see my pain.

A lot of doctors aren’t educated properly on Ehlers-Danlos and think just because you don’t have stretchy skin, or can’t bend your fingers back, that you couldn’t possibly have it. I scored a 8 out of 9 on the Beighton test for hypermobility — it’s too bad I don’t have that kind of luck playing the lottery.

So what to do, what to do? I take one day at a time.

Ehlers-Danlos, like many other diseases, you may have periods of remission or low pain, and other times it peaks and you can hardly peel yourself out of bed. It’s frustrating as hell.

I’m fiercely independent and equally as stubborn. A piece of me dies when I have to ask someone for help for something I can damn well do myself. I don’t want to be a burden, or feel like I’m draining to everyone around me.

Because of EDS I feel pain much more acutely, and it’s harder to treat because EDS doesn’t respond well to pain medications. Ironically exercise is one of the best treatment, although there are times I have to crawl up the stairs, I push myself to do it, because in the long run it is what’s best.

Other oddities to expect when you’re Gumby include chronic dental problems. I’ve always been on a first name basis with my orthodontist and dentist. I had a narrow palate that required an expander (it operated by turning a key, very painful, tell me that’s not the most archaic device you’ve ever heard of), had multiple teeth yanked, and enamel that disintegrates and requires bonding. Delta Dental loves me.

Another is Secondary Raynaud’s disease, which makes me have hands and feet the same color as a corpse. Guess you’re not supposed to have dependent lividity when you’re ALIVE.

Another fun fact: having paradoxical reactions to benzodiapazines, which means things like versed keep me wide awake and make me violent instead of sleepy and happy. I can’t even enjoy the good drugs. Dammit.

I’ve started joining websites and groups to talk to other people who have Ehlers-Danlos. It’s nice to contrast and compare. It’s nice to finally have a reason besides ‘you’re just different’ as an explanation to what the hell is going on.

Good news, even though my children have a 50% chance of inheriting this, they will only be bendy folk. Ehlers-Danlos runs true, so I will never have a child with the most deadly form, vascular. I may end up in a wheel chair, I may not. All I know is that I’m not in one today, I hurt like hell, but I’m still independent.

I got shit to do.


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