Jae (The Tinman) 🐾🌈 they/them

#queer #disabled #RA #fibro #smallfiberneuropathy #GAD #depression #artist #ActuallyAutistic #Migraine
#HighRiskCovid19 cofounder. RT ≠ endorse. Opinions mine.

[Jae (The Tinman) 🐾🌈 they/them @UnxpctdAdvocate]

@migrainesallday (significantly) my small fibers and has already begun eroding my large fibers.
So right now I have to watch out for signs of infection. And if walking stops getting better I have to go to the ER. It's slowly getting there. Then I need to go do some blood work next Tuesday.

[Jae (The Tinman) 🐾🌈 they/them @UnxpctdAdvocate]

@migrainesallday have you or other folks in the #migraine community had nerve issues after a long migraine episode?

2 day migraine, then slept all day, next numbness all over & I could barely walk. I had to use 2 canes to do so. It's like that after bad long ones.

[Jae (The Tinman) 🐾🌈 they/them @UnxpctdAdvocate]

@migrainesallday I reached out to my neuromuscular neurologist about what happened. I want to share what she said.
A migraine can aggravate underlying conditions/issues. For me, that is walking because I already have problems with that. I have small fiber polyneuropathy. The myelin has eroded

[Jae (The Tinman) 🐾🌈 they/them @UnxpctdAdvocate]

@migrainesallday Thank you

[CreakyJoints.org @CreakyJoints]

Nika shares her 17-year journey to an IgG4-RD diagnosis, including how she advocated for herself. She offers valuable tips for fellow chronic illness patients, highlighting the unique considerations people with autoimmune diseases have in everyday life. https://t.co/Kq0UZNbF8I

[Jae (The Tinman) 🐾🌈 they/them @UnxpctdAdvocate]

@ravenscimaven I got COVID the 1st time back in Sep & ended up sick for a month. COVID caused bronchitis for me.

I already have multiple autoimmune diseases, fibro, a rare neurological disease - small fiber polyneuropathy, large fiber & more.

I have new & lingering nerve/joint/muscle issues

[Jae (The Tinman) 🐾🌈 they/them @UnxpctdAdvocate]

@BlondeHistorian @GuideDogAva past my back right where I was. I looked over my left shoulder and saw the blue because I felt the wind on my body. It scared the crap out of me.
As soon as that vehicle passed Carrick calmed down and was ready to keep walking. He saved my life.

[Jae (The Tinman) 🐾🌈 they/them @UnxpctdAdvocate]

@BlondeHistorian @GuideDogAva stopped next to every street or entrance. I went to cross the entrance & Carrick planted all 4 paws & refused to move. I tried to get him to move and then he began backing up. I went to him & began talking to him - he never acted like that. A big SUV whipped around a car, flying

[Jae (The Tinman) 🐾🌈 they/them @UnxpctdAdvocate]

@mattbc What is considered a relevant disability?

Asthma in general? Lowered immune system? Heart problems? The things listed that make you high risk for COVID?

Or what about an indirect result that causes you to have Long COVID, which in turn may make you lose your independence?

[The Autistic Coach @AutisticCoach_]

Infodumping is an #ActuallyAutistic love language.

If we don’t feel comfortable around someone, we won’t do it.

If we info dump A LOT, we REALLY like you.

It doesn’t mean we are soul mates or even known each other for long.

But we feel safe.

[Callum Stephen (He/Him) @AutisticCallum_]

Many have claimed to accept that I’m autistic and later criticised me for being too literal, too direct or for misunderstanding them. But, accepting someone’s neurodivergence requires you to accept all their neurodivergence-related differences - even those you find inconvenient.

[Jae (The Tinman) 🐾🌈 they/them @UnxpctdAdvocate]

@the_tweedy Alexithymia isn't an Autistic trait. It is considered a comorbidity & occurs in the 80th percentile for us. Based on that data I would say it's a blend of both.

But logic is so much more.... appealing & useful anyways. Especially if you are female presenting *sigh*

[Jae (The Tinman) 🐾🌈 they/them @UnxpctdAdvocate]

@dogfather This is my sweet Edgar whom I lost almost 2 yrs ago. I adopted him at age 2 & had him for 10.
I got him right before my first health diagnosis & he was exactly what I needed. Pure unconditional love.
He never made @dog_rates but he was always my 15/10!

[Jae (The Tinman) 🐾🌈 they/them @UnxpctdAdvocate]

Fantastic piece about the disparities in healthcare for #NativeAmerican folks. Eye opening & well worth the read!

@CreakyJoints @Dividivigirl #ChronicIllness #ChronicPain #pain #AutoImmuneDisease

[CreakyJoints.org @CreakyJoints]

“I could have had my grandparents a lot longer than I did had they been treated properly for their conditions,” says Ashley Krivohlavek.

Health Disparities and Hope: Navigating Indigenous Health Care Across Generations
https://t.co/ZcwW6v8TRK

[J @jessupatlarge]

@CreakyJoints A1: Poorly.
Having Medicare from a disability is a lot like flying standby. Maybe you get in to see a certain specialist, maybe not. Getting bumped for high dollar insurance plans. It is so often a crapshoot, it steals your spoons. It's very anxiety inducing. #CreakyChats

[JP Summers @authorjpsummers]

A2 I refused to allow these hurdles be the final say in my mission to a better quality of life. I told my medical providers to please let me know if there was anything I could do to help move things along quicker, to provide me with access to the treatment I deserved #CreakyChats

[Jae (The Tinman) 🐾🌈 they/them @UnxpctdAdvocate]

@CreakyJoints @authorjpsummers @GHLForg Thank you for having me & thanks for asking me to Cohost. It was truly an honor to be a part of #CreakyChats this evening 😁

[CreakyJoints.org @CreakyJoints]

That does it for tonight's #CreakyChats conversation. Thank you to our cohosts @UnxpctdAdvocate and @authorjpsummers. And a 'thanks' to all of you for your candid vulnerability! We at @GHLForg will keep fighting for a fairer insurance system.

This conversation won't end here!

[Jae (The Tinman) 🐾🌈 they/them @UnxpctdAdvocate]

@CreakyJoints A5: A couple ideas
1. Do a series of articles outlining difficult processes a real patient went through along with their outcome - good & bad
2. Create more opportunities for a wider group of people to be in healthcare & the insurance industry. We need diversity!!!
#CreakyChats