Patti DeMuri

Rare Disease Patient Advocate - helping rare disease patients navigate the medical system and work with their doctors to get the care they need.

[Patti DeMuri @PDeMuri]

@MikeNellis Don't forget about the Colorado candidate for governor who acknowledged he killed someone as a child but refused to answer how many more he had killed. And he does exorcisms.

[Patti DeMuri @PDeMuri]

@potatoslav My grandma stayed with my parents during the winter. One year, she was mad because they wouldn't take her home because there was still snow on the ground. She packed her suitcase, called a cab, took a 4 hour bus trip home. She lived to 99 years old too. I want to be that feisty.

[God @TheTweetOfGod]

I loan it out in June.

[Patti DeMuri @PDeMuri]

@catladyactivist I have MCAS with anaphylaxis. While in the hospital, I had a nurse yell at me to get my anxiety under control. I was trying to get them to give me my emergency meds as I went into anaphylaxis. They put anxiety in my chart and that I'm too focused on mast cells and reactions. Ugh

[Patti DeMuri @PDeMuri]

@TriciaDearborn It seems her response has changed since she got married to a doctor. The whole medicine system is in denial so she is now part of that. Being science minded isn't going to keep you from spreading or getting COVID.

[Kelly @broadwaybabyto]

Eugenics and fascism have always gone hand in hand.

Disabled people tried to warn you.

AI chat bots have “suggested” suicide.

Assisted dying policies are on the rise.

SSA staff have been told to tell disability applicants that suicide is an option.

It’s a cull.

[Fifty Shades of Whey @davenewworld_2]

Schools are cancelling Picture Day because of a wave of concerned parents who don't trust the school photo company Lifetouch after they've been tied to Epstein via billionaire Leon Black

[Dr. Sean Mullen @drseanmullen]

Yeah. A mask cult.
Sure. Call it that.

You know what else was a “cult”?
Hand-washing.
Seatbelts.
Clean drinking water.
Surgery without sawdust and whiskey.

Every time humans figured out how not to die stupidly, someone yelled cult.

So yeah—if a “cult” means noticing that breathing shared air spreads airborne disease, then congrats, you cracked the case.
If it means using a simple tool that reduces viral dose, protects your brain, your heart, your kids, your coworkers—then hail Satan, pass the respirators.

Here’s the part you don’t want to hear:

Masks aren’t about fear.
They’re about pattern recognition.

They’re about looking at six years of data and saying, “Huh. That keeps wrecking people’s bodies. Maybe raw-dogging the air in a pandemic isn’t the flex we thought.”

You don’t call it a cult when firefighters wear gear in a burning building.
You don’t call it a cult when surgeons glove up.
You don’t call it a cult when athletes tape ankles or wear helmets.

You only call it a cult when the protection reminds you that you were lied to—
that “mild,” “over,” “everyone gets it,” and “back to normal” were sales pitches, not science.

This isn’t religion.
It’s physics.
Aerosols don’t give a shit about your vibes, your politics, or how tired you are of hearing about it.

And here’s the uncomfortable truth that really pisses people off:

Some of us never stopped paying attention.

We watched cognitive decline get normalized.
We watched “brain fog” get rebranded as quirky.
We watched kids get sick over and over and were told it’s “good for their immune system” like this is 1820.

So yeah—call us a cult if you need a word that lets you stop thinking.

But don’t confuse discipline with delusion.
Don’t confuse adaptation with weakness.
And don’t confuse people who protect themselves and others with sheep—especially when the herd is walking straight into the slaughterhouse smiling.

This isn’t faith.

It’s survival with receipts.

[Nisha Patel, MD MS, Dipl of ABOM, CCMS @DrPlantel]

Picture this: women in parts of the U.S. are being arrested and jailed for miscarriages, a medical event they didn’t choose, didn’t cause, while not a single powerful man named in the Epstein files is sitting in a jail cell. Women’s bodies are surveilled, criminalized, and punished at their most vulnerable, yet men accused of exploiting and abusing children are shielded by wealth, influence, and silence. That’s not justice. That’s a system that polices women and protects predators. If this were really about “protecting life,” the priorities would look very different. Instead, what we’re watching is blatant misogyny and it’s disgusting.

[Jeannie Di Bon @jdibon]

Why staying still is hard (and why your body keeps moving)

If you struggle to stay in one position including sitting, standing, lying down and feel like you’re constantly shifting, fidgeting, or needing to move, there is a reason for that.

For many hypermobile bodies, stillness is actually demanding. When you’re still, your joints and nervous system have to hold you in place with very little feedback.

There’s no momentum, no rhythm, no natural movement helping to organise things. That means your muscles have to work quietly and continuously to keep joints supported. And when that control starts to fade, discomfort rises.

So the body does something very sensible and it changes position to get some more feedback.

That movement:
• redistributes load
• restores sensation
• resets coordination
• reduces joint strain
• gives the nervous system new information

In other words, it helps the system regulate.

This is why many people say:
“I’m fine for a few minutes, then I just have to move.”

This is also why things like:
• queues
• meetings
• standing conversations
• sitting through events - cinema seats are a nightmare for me 😩.

These activities can feel surprisingly hard even when you want to be there.

What often gets missed is that stillness requires capacity. And when capacity is limited by joint instability, fatigue, pain, or autonomic strain, the body will always choose movement over collapse.

That doesn’t mean you can’t build more tolerance for stillness. It just means it happens by improving:
• support
• coordination
• endurance
• nervous-system safety

and not by forcing yourself to stay put.

So if you need to shift, stretch, stand up, sit down, cross and uncross, lean, or reposition, you’re not failing at being still. You’re regulating 😌.

[Kelly @broadwaybabyto]

One week ago they killed a white woman in broad daylight.

Tonight they’ve shot a protester in the leg and put six children in the hospital.

The kids were in a car with their Dad who was trying to get them out of the neighborhood.

ICE threw a flash bang at the car.

6 children.

[Science girl @sciencegirl]

Children who have strong, consistent relationships with their grandparents often experience better emotional wellbeing and greater resilience.

According to research highlighted by Harvard’s Center on the Developing Child, dependable and nurturing relationships act as a critical buffer against childhood stress. These supportive bonds help stabilize a child’s nervous system, improve emotional regulation, and strengthen healthy brain development.

Grandparents frequently provide exactly this steady, caring presence. Studies have shown that children who regularly spend time with their grandparents often display lower levels of depression, healthier stress responses, stronger social skills, and greater empathy.

[Dan Price @DanPriceSeattle]

It’s been 10 years since I took a million dollar pay cut to pay all staff at Gravity Payments a $70,000 minimum wage. People have wondered: How did it go?

We conducted a comprehensive study of everything that has happened since our 2015 announcement.

We are proof that paying living wages is good for both employees and businesses.

Since raising wages, our revenue and profits have soared, employees have started families while continuing to provide excellent customer service, and clients have become happier and stayed longer.

It worked so well that we raised the minimum to $80,000 and added an employee profit-sharing program.

Yet outside our company, it made no impact: no businesses followed suit, and the pay gap between workers and CEOs remains massive.

[Kelly @broadwaybabyto]

If you’re diabetic and use a glucose monitor, make sure to check if it’s impacted by this flaw.

7 people have died already.

[Co D. Ranks @CRankinit69]

are they slowly releasing young charismatic handsome democratic socialist leaning politicians into the wild from some kind of lab

[tern @1goodtern]

Hello.
Is there anybody out there.
Just nod if you can hear me.
Is anyone at home.

[Briana Mills, LMFT ♿️🏳️‍🌈🍉 @theBrianaMills]

The fact that there’s a cap on how much money disabled people can make but not a cap on how much billionaires can make is part of what’s wrong with this country.

[danisha carter @danishacarterr]

the fact that this is even needed? what the fuck is going on. for the past decade the general public has been hell-bent on exposing the ‘secret pedo rings of hollywood’ or the ‘secret pedo rings of the media’ and now that we have ACTUAL evidence of pedophilia and sex crimes committed by some of the richest and most powerful people in the world… it’s crickets? it has to be VOTED on to be pursued? it requires an AD CAMPAIGN? release the damn files and arrest the people necessary already, i feel like we’re all living in hell.

[Jeannie Di Bon @jdibon]

“Gastrointestinal distress, unfortunately, often gets labeled IBS because gastroenterologists don't know how to look for mast cells”.

Anne Maitland, MD, PhD
Medical Director for the Ehlers Danlos
Syndrome Institute (EDSI) - at our Zebra Club meet up last week

[Barry Hunt @BarryHunt008]

Gulp. The last disease found due to a sudden spike in Kaposi's sarcoma was HIV / AIDS in the early 80s

😳😳😳