Lightnews — Scholar-powered news

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

Posts Media Videos Starter Packs

Pinned

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

2 5 5

Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 11h

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

1 3

Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 11h

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 · 11h

Forgot the hashtags:

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

1 3

Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 11h

failing you.

1 5

Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 11h

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

1 6

Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 11h

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,

1 7

Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 11h

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.

2 5

Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 11h

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.

1 3 9

Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 15h

😭😭😭

Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 16h

"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 · 16h

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

1 1

Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 16h

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

1 3

Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 16h

or to increase our quality of life.

Our health matters.

Our futures matter.

Our dreams matter.

And our lives matter.

1 3

Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 16h

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

1 5

Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 16h

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

1 5

Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 16h

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

1 5

Dr. Ashley | Panicked Foodie @panickedfoodie.bsky.social · 16h

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.

5 1 9

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

Thank you :)

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

(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).

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

Finally looking cute again, now that my hair is growing out a little bit and has some volume.

My skin is pretty dry on my face though. Normally I would moisturize, but I go so long between showers, that it would feel gross.

A woman with a messy short haircut smiles at the camera.

2 23

Reposted by Dr. Ashley | Panicked Foodie

Larre Bildeston @larreau.bsky.social · 1d

“My Autism diagnosis has made me really good at marriage, feels like. I’m often saying to my NT friends, you can just communicate directly!”

Interesting. I’ve noticed how Autistic directness is “wrong”, BUT relationship therapists basically teach couples to communicate like Autistics naturally do.

137 [S10 E9] Meeting myself again: sensory needs, autistic joys and building stronger relationships after autism diagnosis

pca.st

4 20

Reposted by Dr. Ashley | Panicked Foodie

knifeBOOts aka Jen (they/them) 👻 @knifeboots.xyz · 1d

People have no idea how well priced Bibi's disability/mobility aids are and how excellent the quality is. Bibi's stuff LASTS. It wears well. And Bibi is bending over backwards to accommodate US customers right now due to tariffs we never wanted and Bibi has no control over.

🌸Bibi🌸♿ (formerly bibicosplays) @bibiblossoms.bsky.social · 6d

This isn't towards those who are broke.

I've noticed that people devalue my work. I could have hundreds of reviews raving about my products. But people only wanna support me if they feel they're getting a VERY "cheap" price. While so many other creators can charge whatever for their products.

1 36 37

Reposted by Dr. Ashley | Panicked Foodie

Kippie ♠ Do not be obedient in advance @kippie.bsky.social · 1d

Bibi has all kinds of wonderful stuff!! I'm excited about my cane preorder, but there's also super cute stuff for pets, sliding pins, different unique patterns you can get on matching stuff!!

You can also get gift cards for your friends, disabled or otherwise - a great option with krimbo comin up!

1 33 34

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

I am grateful that I have the stuff from my camping days to keep me relatively warm (at least the upper part of me).

And an electric blanket.

And I'm on a medication that makes me extremely hot and sweaty lol

Reposted by Dr. Ashley | Panicked Foodie

GENERAL STRIKE ♿️🏳️‍⚧️🖖🏾🇺🇦♀️🇵🇸🌈 @falkorfriend.bsky.social · 2d

SINGLE-PAYER UNIVERSAL HEALTHCARE for ALL

2 5