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TW: Contains mention of suicide.
I was 5 years old, excitedly cheering on my mom at her softball game, City Park ball fields, Fort Collins, Co. Mom hit the ball, I jumped and cheered with the others in the bleachers, slipped and fell through the bleachers, and life changed. Climbing back up, lifting my pant leg, the tear in my shin was horrifying.
Off to the first, of what would soon be more than I can remember, trips to the ER. There, doctors scratched their heads as they tried to stitch the tear back together and the skin just continued to tear. Thank goodness for Dr. Odems, who had been keeping an eye on me and some previous bruising incidents. He realized this was abnormal, to say the least, and somehow discovered to use the mattress stitch.
It seemed from that moment on my life was a series of bruises, ace bandages, and stitches. We couldn’t go anywhere that didn’t have a hospital nearby! I remember a special trip to ride a train, I was so excited! Getting back on the train, my foot slipped, the stair front caught my shin, and there we were again! The train ride would’ve been too long with a cut like that, so a kindly bus driver let my dad and I squeeze into a full bus, front seat so I could prop my leg up, mom rode the train by herself and caught up to us at the hospital. I could write these kinds of stories forever!
There was also the bendy body. I could twist my arm all the way around, my legs and arms bent backward and I could push my thumb back to my wrist. About this time also came the shin guards, the dreaded shin guards! How could the new kid at school try to blend in with these big bulky shin guards? My parents couldn’t stand to see me get more stitches so they had special skin guards designed to protect me physically, but emotionally there was really nothing that saved me.
Teased, poked, even by teachers, when leaving elementary school and going on to junior high I was labeled ‘most likely to be on the show “That’s Incredible”’. They pinned the ‘award’ to the front of my Gunne Sax dress and I wore it, deflated, all day. I remained known as the squishy girl who bruised easy, nicknamed, Squish, Bruiser, etc.
At age 12 I was done, thoughts of suicide were slipping in, then came alcohol, a place to forget who I was, deep down at the bottom of a bottle. Of course, drinking led to several trips for more stitches, many, many more! My parents, my poor parents, so many late-night calls, I’m cut. It had to be awful to get so many of those calls from a college student a full state away, but somehow I bumbled through. I actually got a BA in education!
A year out of college, alcohol quit working, EDS kept being EDS, and I got sober. I guess I got a bit less clumsy as well, as stitches came less often. Replaced over time by herniated discs, torn Achilles’, out of joint hips (taking the story a bit back to the beginning, I joined a sober softball league!) I played ball for 16 years, no stitches! Lots of aches and pains though.
Finally, at age 42ish… I took a ball to the face, and my stitch-free streak was a strikeout! 14 stitches between the eyes! Whoops! As I’ve trudged through the past few years I’ve suffered fatigue, panic, anxiety, no sleep, and migraines. Doctors sent me to therapists, gave me anti-anxiety medications, but nothing was relieving any of it.
One day a Pinterest pin popped up: 31 facts about Ehlers-Danlos syndrome, what’s this I wondered. As I read, answers came flooding to me! I had no idea that EDS was a multi-systematic disease! The doctors that had diagnosed my dad and I were retired.
So, the past two years have been rediscovering all about 49 year old me! I’ve found a doctor that is well versed in EDS, and taking Plaquenil for fatigue relief. My job was not too excited about me having to call in sick because fatigue was paralyzing me, with no predictions of when it could hit.
As life brings changes I continue to discover more symptoms and finally some medical professionals who listen and get it! The current situation of quarantine brought a whole new level of anxiety and a new doctor who decided to cut my Xanax prescription off completely! Ahhhhhhh!!!
The past couple years have really increased my ability to reach out and ask for help, I was directed to a nurse practitioner in the mental health department, her name is Dr. Diamond, with a name like that I knew it was fate! She prescribed quetiapine, an extended-release med that not only allows me to sleep but also controls day time anxiety! I feel amazing!
I’m in a beach body workout group, it’s great! I can do some weights and yoga. I’ll also be going to a PT, who has EDS!
Hoping to get ways to relieve thumb joint pain, I invested in a thumb brace recently, at the end of an online teacher day I wear it and it provides tremendous relief. I guess this is where my writing stops. I’m here, the present moment, finally able to use this as a springboard into being better!Tags: awareness, Coping, Diagnosis Journey, dislocations, pain management
Categorized in: Stories