Community Voices
Community Voices

The mask is what you don’t know
It’s what I don’t show
It’s the pain everyday that I don’t “woah”
Cause woe is not me
Nah I’m a pro

Breathe in
Go with the flow
One step at a time
Nah, you don’t know
One rhyme at a time
I’m good though

It’s my new pose
Cause I can’t “flow”
So i Let go
Of that sorrow
Hold tight for that rainbow
Bite tight on that pillow

Authenticity becomes a burden
My mask, my warden
What you don’t know won’t kill you
It might kill me but it’s uncertain
Nothing to see here, pull the curtain

You don’t want want to know cause you hurtin?
You can’t say nothing cause of disservice?
To me or to you?
Don’t know what to say?
Say what, no don’t.
Quick change the subject, we need a diversion

My coercion is not inadvertent
This version of me is what I’ve determined,
This assertion of me no doubt a costly exertion,
A necessary front
My warrior shadow
I’m still in here just through these windows


#HashimotosEncephalitis #Encephalitis #EhlersDanlosSyndrome #Syringomyelia

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Community Voices
Community Voices


Community Voices

Syringomyelia rapid onset at 25yo

So I started one night where I noticed a tingling sensation in my back. Which I dismissed but a few days later I had numbness in my legs. That’s when I knew something wasn’t right. A couple nights after that my numbness was so bad I had my dad take me to the ER after a long wait they did an MRI and discovered I have a massive Syrinx that’s wide going from C2 to T12. My symptoms so far have been weakness in all 4 limbs and entire body I’m still able to walk but not very far. My bowel and bladder don’t feel 100% urinating is weak and I only have a bowel movement every 1-2 days despite eating. Pain in my neck and back. My numbness is now all over my body. I have a follow up the a Neurosurgeon named Ankit Mehta Who wants to do decompression surgery because I also have Chiari Malformation 1, and with the size of my Syrinx I may also need a shunt placed in my spine the risks of this operation are terrible but I don’t want to wait with how bad I’ve gotten in just a month. Please if anyone knows anything or has info I’d appreciate it this disease is very rare.

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Community Voices

My Mom Apologized for Not Believing Me #EhlersDanlosSyndrome

Last night I came home (my mom moved in a few months ago to the house I own to help me) to my laundry put away and a gorgeous salad. My mom, my best friend, my partner in this strange adventure, gavee the most sincere apology I've ever received. She told me she feels horrible guilt for not believing me every time I tried to get out of mowing the lawn, doing chores, helping, etc because my "back hurt" or my "knees hurt." She always thought I was faking to get out of helping, and I always knew that she genuinely thought that and wasn't trying to hurt me. We went to the geneticist together last week and aside from being diagnosed with hypermobile Ehlers-Danlos syndrome, I have enough concerns, a scary enough family history, and a bunch of strange physical signs like bilateral curved pinkies, a small head, posteriorly rotated ears and a straight palm line on one hand that they decided to run whole exome sequencing. After I showed my mom my lumbar MRI from February where it looks very much like I have tethered cord, which explains so much, she finally really understood. She apologized, and I thanked her, and we cried, and then sat outside in her garden together and it was beautiful. I am taking better care of myself than ever and enjoying every minute with my mom. It's not all bad. #EhlersDanlosSyndrome #RareDiseases #Dysautonomia

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Community Voices

Fibromyalgia and Clothing

<p><a href="" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce7f00553f33fe992ab1" data-name="Fibromyalgia" title="Fibromyalgia" target="_blank">Fibromyalgia</a> and Clothing</p>
53 people are talking about this
Community Voices

I should feel happy and grateful....

<p>I should feel happy and grateful....</p>
7 people are talking about this
Community Voices

I should feel happy and grateful....

<p>I should feel happy and grateful....</p>
7 people are talking about this