It's Ehlers Danlos Syndrome Awareness month.
This illness makes me feel like I'm rotting from the inside out sometimes.
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It's Ehlers Danlos Syndrome Awareness month.
This illness makes me feel like I'm rotting from the inside out sometimes.
My mom's beautiful art!
After years of questioning, gaslighting (from others and myself), and feeling like I was just being “too sensitive,” I finally have a name for what’s been happening to my body: Hypermobility Spectrum Disorder (HSD).
My rheumatologist believes it may actually be hypermobile Ehlers-Danlos Syndrome (hEDS), but due to the diagnostic overlap and current criteria, I’m officially diagnosed with HSD for now. I scored 7/9 on the Beighton Scale, and for once, a medical professional looked at my history and actually listened.
It’s incredibly validating—but also a lot to process. I had physical therapy today, and after I shared my diagnosis, my PT adjusted our entire approach. He introduced me to a low-impact strength training program made specifically for people with hEDS/HSD called Bending Without Breaking, I believe? (Which is such a good name, honestly.)
Turns out, my core is way weaker than I realized. I’ll definitely be feeling today’s session later… but it feels like the right kind of hard. The kind that means I’m actually working with my body now instead of fighting it.
Since I can’t take NSAIDs because of my bariatric surgery, the only medical treatment I’m on now is gabapentin; at six times the dose my psych originally prescribed for anxiety. It’s wild how pain management is often trial and error, especially with conditions like HSD.
I also have blood tests coming up, some routine, some autoimmune panels I’ve never had done before. I can feel my B12 is probably low, and my protein intake hasn’t been ideal lately. I’m anxious about what those labs will show… or won’t show. But either way, I’m doing what I can.
This diagnosis doesn’t change who I am or magically make things easier, but it does lift this unbearable weight I’ve been carrying, like I finally have permission to stop doubting myself. I shouldn’t need a diagnosis to feel valid, but after so long, it means everything.
Here’s to healing, to answers, and to not bending until I break.
Won’t keep you in suspense any longer -
A runaway pet zebra that was on the loose for more than a week in Tennessee and became an internet sensation in the process has been capture
My ‘flex’ for the weekend, is finding the illusive 6 y/o’s hiking boot, in her closet, which is where it belongs, after the entire family spent several hours scouring/cleaning the house Saturday morning while I was at yoga looking for it.
Boot-to-hand time, less than 5 minutes.
(Takes a bow) 💪
Tell me your flex xx
T minus 22 hours until my new chair will be here! So or course I had to be dramatic and do a night before Christmas parody. 🤪
How it feels to live with ehlers danlos syndrome:
Standing Too Close by Kate Larkindale.
Blue Lannigan is seventeen, he has two brothers and they live with their mum, but it isn't a good place to be, she is a drunken, abusive mess and Blue has been able to shoulder the most of the burden of keeping the family afloat in the crappy apartment, in a bad area, however, when the abuse turns on his younger brothers, he knows it is time to leave.
Unfortunately for Blue and his brothers, they have limited resources and only a small amount of time to pack, so with everything they own in a rucksack and bin bag and head on a bus to the Lake where there are bound to be some empty houses where they can shelter temporarily. The only piece of luck they have is someone passing by who believes that Blue is heading the same way he is, but someone who doesn't notice the two young boys who are also tagging along and this takes some time and hardship off their journey through the middle of the night.
The three brothers eventually find somewhere and they hole up for the night, just the next day, an unexpected visitor turns out to be someone Blue knows, but also someone who may be able to help them, so as over the next few days, a makeshift partnership is agreed and life starts to fall into an oddly comforting routine, that is until a supermarket trip is needed and an uncomfortable confrontation ensues leaving Blue in handcuffs, his brothers taken away and a return to a system he has been dreading for them all, not to mention losing his job.
As the weeks pass, all Blue wants to do is find his brothers and keep them safe, but will he be able to provide the stability that they need, or will the system swallow them up and end up being worse than the home life that they fled? This is a challenging read which deals with humanity both at its best and worst, as you follow along with Blue and his brothers as they navigate life and all that comes with it.
y’all i came across the most amazing art on facebook this morning
im in a bunch of EDS facebook groups and an artist posted a study of their hand in the Signature EDS Position™ and i’m obsessed
i remember taking a figure drawing class and doing drawings of our hands for homework. the assignment was to put your hand in an “interesting position” and draw for 6 hours. During critique, my professor had me put my hand in the position I drew it in to check my proportions, because it didn’t look like a possible position to her. she was shocked when i put my hand there with ease.
credit to aislin.sparrow on instagram
this study is not just incredibly technically well done, it shows abnormality in figure drawing, something we don’t get much of
it’s so nice to see your body in art. so much love to this artist and any disabled artist out there
our bodies are worth drawing