#spina bifida

[gayaest]

Another OC: Yaretzi — which means “you will always be loved” in nahuatl (from my research, you can always correct me if I am misinformed) 🌺🌸🌼

[friendrat]

Geez... I was just doing some reading on the internet and got a punch in the gut.

This started because I saw a post in a womb twin survivor support group where someone had posted and was describing how they were born with a pin hole in their spine, which sounded very similar to my own diagnosis of Spina Bifida Occulta.

Anyway, certain health problems are more common in Vanishing Twin Survivors, and I thought I remembered that Spina Bifida was one of them, so I was looking it up to see if I was remembering correctly.

As I'm scrolling, one link said, "Spina Bifida a vanishing nightmare." So I clicked on it, and it was a quick thing about how numbers were going down, and they weren't sure why, but part was attributed to terminating affected pregnancies. The conclusion was that if they continued "preventative measures" i.e. termination, Spina Bifida could disappear. Of course! The solution to this health problem isn't to work on an *actual* cure or improve treatments... it's to just kill the people who have it. That will solve everything.

I'm just... I don't even know why I'm surprised. They wanted to kill me then. Of course, they would want to kill me if I was born today. I don't know why I would expect anything else... but it made me so... sad.

You know... I had an older cousin who had a much more severe case of Spina Bifida than I do. And when I say older, I mean he was like my parents' age. He was worse off than me, but he was always smiling. He was always joking with people. He volunteered his time to his local church, he stood by his principals, he helped out people in need without ever asking anything in return... and when he died, the funeral home was packed. There was a line around the building of people waiting to say their goodbyes, and it kept up the entire visitation. People were parked way down the road and had to walk to get there. My cousin was a light in people's lives.

But if he had been born right now, people would just weigh his life based on his disability and determine that he should be killed before his light could reach anyone. But sure... we can eliminate this disorder by killing the people who have it. It's disgusting that people think that way. There's no other word for it.

[jackcast2021]

Pretty spina bifida girl

[theinternetisaweboflies]

[masterofescapism]

Episode two of my podcast, My Death Project, is out now! The podcast is about being terminally ill at 28, and this episode is about being fat in the medical field.

I would super appreciate a reblog! Trying to spread awareness and reach people in a similar position as I am.

Apple podcast and Spotify are below, but you can find it on other streaming sites too!

[aquaticfreakshow-sys]

Being physically disabled is absolutely hell while living in a non wheelchair accessible house, with family members who aren't the best with the topic.

We have spina bifida, and because of this we use a wheelchair. Its impossible to use it in our house, so my grandfather keeps it stored outside until we go into town, when he puts it into our van. We used to keep it in our own room, but that was difficult due to having a very small room. It has also been stored in our dining room corner, which was actually fine. But it was left outside again after our most recent day out.

We also have abnormalities/deformities with our legs and ankles, the tendons and leaders didn't form correctly and are basically just upside down. Which means we cannot stand normally, or walk - we have to be tiptoed or its straining and painful.

Alongside arthritis and the overall chronic pain from all of this.

We had a pretty bad fall yesterday night, and the entire left side of our body is messed up and bruised, left leg is completely unable to support getting around, left arm is weak and our wrist is most likely sprained.

We fall often, but usually when our family is awake, this was at night. While trying to make food, which included very hot water. Didn't spill it, thank fuck.

I'm hoping these kinds of situations can make our family take this more seriously and stop skipping our doctors appointments. They're our only transportation and they keep ignoring it.

We're completely stuck in bed unless we want to fucking crawl around, because saving up for crutches to use around the house has been impossible due to our mother borrowing our money.

I'm complaining, basically.

[drowningdust]

kurt & his kitten, spina bifida <3

[claymorexpunisher]

Hi, hello.

You’re not lazy simply because you can’t find the energy or concentration in order to be “productive”. (Whatever “productive” means to you)

💙💙💙

[phoenixisazebra]

Considering my name is PhoenixIsAZebra, I figured I would explain what the significance of the zebra is to me and why I have them all over the place since I've been asked a number of times in my life now. 😆 I copied and pasted this from the Ehler's Danlos Society's website since they say really do say it best:

Why the zebra?

People with the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) often identify themselves as zebras.

Medical students have been taught for decades that, “When you hear hoofbeats behind you, don’t expect to see a zebra.” In other words, look for the more common and usual, not the surprising, diagnosis.

People with rare and chronic diseases spend years searching for answers:

“But you look normal”

“You’re too young to have so many problems”

“You’re too old”

“You can’t have that, it’s too rare”

“No one knows what that is”

The zebra became our symbol because those with Ehlers-Danlos syndrome and hypermobility spectrum disorder are the unexpected. “Sometimes when you hear hoofbeats, it really is a zebra.”

When you see a zebra, you know it’s a zebra—but no two zebras have identical stripes just as no two people with an Ehlers-Danlos syndrome or HSD are identical [and] we have different symptoms, different types, and different experiences."

So there you have it! As someone who suffers from Ehlers Danlos Syndrome and a vast number of comorbidities, that is why this Phoenix is a Zebra!

Zebra hand drawn by Phoenix on iPad app, Procreate.

Follow me on Tumblr, Instagram, TikTok, and Facebook @PhoenixIsAZebra for more about my health journey, art, writing, and more!

[gayaest]

Chibis of my original characters! 🌈🩷

[billiejoeisaburrito]

If anyone is keeping up with my health updates

WE HAVE FEELING IN THE LEFT THIGH!

[jackcast2021]

Spina bifida girl

[dearpanina]

My spina bifida baby. ♥️🎄 Almost 8 hours in the OR for VPShunt insertion and repair of myelomeningocele. 🫰🏻🥺💝 Truly a gift and a miracle from above.

[brightorangerain]

Facts about Non-Verbal Learning Disability (NVLD or NLD): MANY people with spina bifida have NVLD.

[masterofescapism]

The first episode of my podcast, My Death Project is out now!! You can find it on your favorite podcast app, but I’ll also link Spotify below.

I’m excited, but also nervous as hell. This is the most vulnerable I’ve been in a long time.

Spotify- https://spotify.link/aIZdnd1MaEb

[urbancripple]

Checking in With The Classic Crips

Folks with Cerebral Palsy, Spina Bifida, SCI's, and leg amputees - you know, the "classics". How have y'all been holding up recently? Any questions you think I can answer? Any tips or advice you wanna share or ask for regarding surviving the day-to-day during a pandemic and/or late-stage capitalism?

And for those of you seeing this about to reply with something like "I don't have <blank>, but..."

Just don't. I've made it crystal clear who I'm trying to reach out to, thanks.