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Dr. Ashley | Panicked Foodie

@panickedfoodie.bsky.social

3.1K followers 1.3K following 4.1K posts

Scientist | Cornell Alum | Bedbound w/ severe illness | Gamer | #NutcrackerSyndrome #MayThurnerSyndrome #Endometriosis #B12 #FluidMechanics #HeatTransfer #CovidIsAirborne Bell: 10-20 TikTok, YT: The Panicked Diaries disabled.social Mastodon server admin

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Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · Jun 19

I have finally sat down and worked on a GFM for my ongoing catastrophic medical costs.

I have a lot of medical debt that I am trying to take care of. This would be easy to take care of, if I was well enough to actually work. But instead, got dealt the bedridden hand 😭

gofund.me/4f23b691

Donate to Relief Needed for Devastating Medical Costs, organized by Dr Ashley

As most of you know, I have been bedridden for a few years now in agonizing pai… Dr Ashley needs your support for Relief Needed for Devastating Medical Costs

gofund.me

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Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 1h

I'm reading my first witch and vampire book, and I must say, I kind of like it lol

Now, I have been reading the same book over a few months... 😬 but that's beside the point.

(I sleep for a lot of the day, and for the little bit that I'm up, concentration usually isn't that great).

Reposted by Dr. Ashley | Panicked Foodie

aslynn's tremendous 'tism horror show 👻 🎃 @audhd-psychnp.com · 21h

It was really powerful when I realized that,

in order to be “unapologetically me,”

in order to shed my inappropriately high level of guilt,

I’ll need to tolerate being made to feel as if I ought to apologize,

I will need to tolerate feeling like I’m “in trouble,”

& then STILL *not* apologize.

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Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 8h

Gravity Circuit is free on Epic Games until October 16th.

Looks and feels similar to the early Mega Man games.

store.epicgames.com/en-US/p/grav...

Gravity Circuit | Download and Buy Today - Epic Games Store

Download and play Gravity Circuit at the Epic Games Store. Check for platform availability and price!

store.epicgames.com

Reposted by Dr. Ashley | Panicked Foodie

Robby Roadsteamer @roadsteamer.bsky.social · 8d

MAGA World! Visited Broadview, Illinois and their Ice Facility 💙🐊

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Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 1d

I think this song is one of my favorites 🤣🤣🤣🤣

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Reposted by Dr. Ashley | Panicked Foodie

Chris 🎃 DevPods.gg gamedev community @chrisdeleon.bsky.social · Jun 15

the best part of these photos is that while my friend went across the street to take the third photo a pickup truck came around the corner and didn't see them, just me, so the slowed down thinking I was doing this gesture for them. those older guys gave me a big ol confused thumbs up then drove away

Me posing in a neighborhood with absurd street art painted on a metal electrical box. I look enthusiastic in each. First is a realistic turtle with birthday party hat and balloons

Next is a duck wearing headphones over ear with a painting on a stand of a heart on a white box

Me posing by a turkey in a shirt skateboarding

Me gesturing at rabbits in a band, skinny one in glasses on rhms and another ina. For has a guitar and is sitting on speakers

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Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 2d

It appears they didn't like being called out. 😇

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Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 2d

My thoughts exactly!!!

And they also admitted that they are a spin-off of curable 🤣

A post from the recalibrate account on Twitter that says our app and site are not properly built yet. We are seeking actually to solve some issues that curable has brought up. Just give us some time.

Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 2d

Forgot the hashtags:

#LongCovid
#pwME
#Disabled
#ChronicPain
#CPP
#NEISVoid

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Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 2d

failing you.

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Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 2d

which means we need actual research.

Prescribing brain retraining is a cop out, negligent, and lazy medicine.

It also shifts the burden of responsibility onto the patient, so that the provider can wash their hands of them entirely. Don't get better? It's your fault, not the Healthcare system

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Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 2d

pushed towards, are programs like these which are largely inappropriate and do nothing.

I can't brain retrain a DVT in my stent to alleviate the blocked flow. 🙄

These programs are also inappropriate for all of the medical conditions that they mentioned. We need actual treatments,

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Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 2d

inserting themselves on to disabled people's threads.

It's the typical sales pitch. First, they try to empathize with the poster and connect. Then they insert their advertisement. Grifter behavior.

The suicide rates for chronic pain patients has greatly increased. One of the first things we are

Some offerings of the recalibrate app including pain science fundamentals, movement and recovery, mindfulness for pain.

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Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 2d

For those maintaining block lists on here for long covid and other diseases....

I have another account for you to add.

See screenshots.

It's a curable app knock off, that says that we can brain retrain for long covid, mecfs, chronic pain, pots, CRPS, etc.

And they are inappropriately

A screenshot of recalibrate with the handle @recalibratepain.bsky.social

A post from recalibrate on Twitter that says if you have fibromyalgia, long covid, pots, css, crps, arthritis or any other chronic pain illness please reach out. We want to connect with you. Join our recalibrate app wait list at recalibratepain.com. we are building a community of support connection and education.

Then there is a graphic below with a woman standing with a cane with a text what gets me about my disability isn't that I can't do things it's that I don't know if I will be able to do things. Doing a thing can either put me in bed for days it can be totally fine, no big deal or randomly make me feel better.

A screenshot of the recalibrate account over on Twitter inserting themselves onto an mecfs thread advertising.

A screenshot of a post from a caliber on Twitter that says Healthcare systems are not set up to handle pain. They are set up to handle injury and sickness. It's difficult, I'm sorry you had this experience. We hope to improve things like this with our recalibrate app coming next year.

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Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 2d

😭😭😭

Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 2d

"Physicians’ biases and discriminatory attitudes appear to play a significant role in perpetuating health disparities for people with disabilities."

www.healthaffairs.org/doi/10.1377/...

‘I Am Not The Doctor For You’: Physicians’ Attitudes About Caring For People With Disabilities | Health Affairs Journal

People with disabilities face barriers when attempting to gain access to health care settings. Using qualitative analysis of three physician focus groups, we identified physical, communication, knowle...

www.healthaffairs.org

Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 2d

pmc.ncbi.nlm.nih.gov/articles/PMC...

Physicians’ Perceptions Of People With Disability And Their Health Care

Over 61 million Americans have disabilities, and increasing evidence documents that they experience health care disparities. While many factors likely contribute to these disparities, one little-studi...

pmc.ncbi.nlm.nih.gov

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Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 2d

References that go over the statistics pertaining to attitudes of medical providers towards those with disabilities:

www.nytimes.com/2022/10/19/h...

These Doctors Admit They Don’t Want Patients With Disabilities (Published 2022)

www.nytimes.com

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Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 2d

or to increase our quality of life.

Our health matters.

Our futures matter.

Our dreams matter.

And our lives matter.

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Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 2d

thread, but a warning that if you are disabled or chronically ill, the comments may be upsetting:

I'm sharing this more to educate those who are healthy, to see what we are up against.

No one chooses this life. We deserve access to care to cure us if possible,

www.instagram.com/reel/DPrbcy2...

Welcome back to Instagram. Sign in to check out what your friends, family & interests have been capturing & sharing around the world.

www.instagram.com

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Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 2d

you obviously will not receive a diagnosis because they will not feel the need to dig in further.

Without treatment, most rare diseases are progressive. By the time it has progressed and they will take you seriously, now you are often times medically complex. 🙄

I'm going to share a link to the

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Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 2d

What they're failing to understand, is that complex patients are created by the medical systems themselves. By errors of their own colleagues.

Because when you first suspect something is wrong and you go to the doctors, first you are told nothing is wrong with you and you're fine, and then

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Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 2d

There was a young woman on Instagram whose surgery was canceled at the last minute. It was going to be a lifesaving surgery.

The comments on the thread, are horrifying to read as a complex patient.

I mean, I obviously got the sense that doctors really do not like complex patients.

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Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 3d

Thank you :)

Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 3d

(no I'm not better, I'm just growing my hair out a little bit. Trying to time it with the possible kidney donation for nutcracker syndrome).