♿Sable 🧠🌩️

Chronic daily Migraine for 12 years | POTS | EDS | Hypersomnia | Currently unDX muscle disorder | Fighting to get the proper care.

[♿Sable 🧠🌩️ @MalfnctionBrain]

It's been 2 hours of this now
Normally it's minutes, not hours
I'm trying to say "my brain is malfunctioning"
Yet as me writing this tweet shows, speaking and writing are in 2 different regions of the brain.
#AcademicTwitter #NEISvoid #neurology #Neurodiversity #neurotwitter

[♿Sable 🧠🌩️ @MalfnctionBrain]

@TPP_MD Disability continues to be discounted. In everyone. Particularly when people seem 'normal'. Invisible illnesses and Disabilities affect millions. There needs to be more compassion with others. In general.

Often, assuming the worst, if someone doesn't meet these standards.

[♿Sable 🧠🌩️ @MalfnctionBrain]

@TPP_MD Children are people, too.
We need to listen to everyone when they say something is wrong and not assume the worst of them.
And even if it is just a child not doing exactly what they are supposed to do. They should be listened to as to why. Not told just to keep trying harder.

[♿Sable 🧠🌩️ @MalfnctionBrain]

@DisabledDoctor @Ren_Cerebral They kept saying it was temporary and I'd be better.

I also despite having a 504 plan was never accommodated for my disabilities as a child. Instead forced to accommodate them, and punished when I couldn't.

All of what I was told was I just wasn't trying hard enough.

[♿Sable 🧠🌩️ @MalfnctionBrain]

@DisabledDoctor @Ren_Cerebral I had a hard time giving myself the disabled label, or even engage with someone else who was going through what I was. Why? Because as a child a counselor told me to not identify with being sick. To not research these things, to not focus on my symptoms. To just ignore it.

[♿Sable 🧠🌩️ @MalfnctionBrain]

I'm in agony now daily and so unstable that missing my medication means me in the ER.

I wish I had emergency shots on hand. Anything. Some rescue at home that means I don't end up in the ER to receive relief from a flare.

Or better yet for them to treat it again. It WORKED!!

[♿Sable 🧠🌩️ @MalfnctionBrain]

I've just continued to get worse.
I'm in so much pain that it being untreated means that even with muscle relaxers until my pain is treated they won't stop spasming and are like bone in my body. The worst being my core. I'm sick from the pain alone. I go in tomorrow.

[♿Sable 🧠🌩️ @MalfnctionBrain]

I hope the dr. Will help me.

They stopped my treatment, which when I was on didn't need pain medication.

In the meantime while they are doing a second opinion on if I need this treatment that works, I'm now needing the medications I had stopped again.

[♿Sable 🧠🌩️ @MalfnctionBrain]

@DisabledDoctor So hypermobility and POTS at a young age, then a possible infection triggered more debilitating symptoms. 13 I was diagnosed with POTS. hEDS at 14. But I was also going through puberty and was getting worse migraines from hormone fluctuations.
Now it's the least of my worries.

[♿Sable 🧠🌩️ @MalfnctionBrain]

@DisabledDoctor I'm a weird case. Genetic testing is negative but due to my presentation, the geneticist diagnosed me with hEDS. I do have myelin sheath damage from a viral infection and the hypothesis that my infection triggered worsening symptoms in me. As I had POTS symptoms as young as 8-9.

[♿Sable 🧠🌩️ @MalfnctionBrain]

On my way for testing doing ok

[♿Sable 🧠🌩️ @MalfnctionBrain]

Off all the muscle relaxers today I'm slowly starting to cramp

[♿Sable 🧠🌩️ @MalfnctionBrain]

Ok guys tomorrow I stop 40mg of baclofen 3x a day and 10-20mg of diazepam a day to none for an EMG. It's going to somehow get rougher than I already am.

#DisabilityTwitter

[♿Sable 🧠🌩️ @MalfnctionBrain]

On the 12th I have 3 appointments. EMG, lubar Puncture and I'm donating my DNA to be in @AllofUsResearch
I'm hoping to get answers and give answers that day.
Then the 26th an MRI. And soon? My genome sequenced supposedly. I'm going to hopefully get answers. #DisabilityTwitter

[♿Sable 🧠🌩️ @MalfnctionBrain]

@FrickerAlice I feel you so much ❤️ I had symptoms at 9. Made it to fith grade. Half of 6th and 7th grade. 8th grade I was too sick. I was forced to graduate at 16 because @KamalaHarris had a war on truancy. Prosecuting parents for children missing class. Kamala Harris went after me.

[♿Sable 🧠🌩️ @MalfnctionBrain]

@lapis_lazuli11 Sorry spasms cause spelling errors now. As I'm worsening I'm having to learn more compensation

[♿Sable 🧠🌩️ @MalfnctionBrain]

@lapis_lazuli11 I'm bed bound too (different condition)
Only its doctors why think my mom is baying me. Yet when I'm good and treated (fighting to get my treatment back) I can do things so easily I don't need to help. We want to be independent. Nothing more. If I could I would. Sending ❤️