NEW ORLEANS Creole Chick

Shaina. Every day struggle. #MECFS since 2005 #hEDS #MCAS #HardofHearing 8th Generation #NewOrleans native #LouisianaCreole #MedicallyDisabled Probable: #CCI

[NEW ORLEANS Creole Chick @CreoleChick]

P.S. If you WEREN'T tagged on here, please charge it to my tortured body and mind, and not my heart and spirit.

No one ever knows where the help will come from and we can't afford to turn away from anyone.

Thank you sooo much in advance.

[NEW ORLEANS Creole Chick @CreoleChick]

It's been a month of unrelenting torment. I've only been this bad off once in my life over 20 yrs ago & I barely survived. I'm at my wit's end & so desperate. I need help. Guidance, support, direction. The right doctors, treatment, a plan. My husband & I are drowning. 1/

[NEW ORLEANS Creole Chick @CreoleChick]

Throwing it back up. Like with many things, I've had to take this over halfway because my baby can start things but her body won't let her finish them. She's the most brave, strongest, funniest person I know. If you can help or know someone who can, please let us know. 6/6

[💀💍 ACAB Stop the genocide! @FQMule]

No

[Covid Caution - BA.3.2, XFG, LF.7, LP.8.1 @CovidCaution]

Reminder: No public health body said that COVID has gone away, they've just made you think it's safer to get reinfected repeatedly, which is false, and contrary to their own warnings, statements, and published data. It's doublespeak to make you prop up the economy with your life.

[Cat Herding Science Nerd @catladyactivist]

I almost always figure out my dx before going to #doctors

Then, I carefully list symptoms without any non-essential info, guiding them to a textbook version so it's easy for them to arrive at the right conclusion. You get the right tests when they think THEY had the idea.

[Void @M8Void]

I get that there is no help coming. But I have a really hard time contending with the fact that we will be having to fight a forced infection policy society for the rest of our lives.

[NEW ORLEANS Creole Chick @CreoleChick]

Docs will basically drop you for ANY reason. I was rejected by an immunologist b/c I didn't think I should risk taking a pneumonia vax at the time when I'm homebound & didn't think it would do much to help w/my QOL, #MEcfs (which he had no knowledge of) & poor immune response.

[Dr. Ashley | The Panicked Foodie @PanickedFoodie]

A false assumption that healthy people make, is that once you are diagnosed with a rare disease, a doctor will take on your case and help you.

NOPE

Rare diseases have some of the highest case rejection rates.

Doctors can choose to not take on your case.

And it happens

[NEW ORLEANS Creole Chick @CreoleChick]

@atpyrgusmalvae @SurvivingCFS Absolutely this. I thought I was mod to severe until Whitney's scale & realizing that I've been severe to v. severe for at least a decade+. Hubs prepares & serves all meals & the 1-2 showers I can manage a week are w/his aid. I'd definitely be even worse without his help.

[Prof. Eliot Jacobson @EliotJacobson]

Your 'moment of doom' for June 15, 2024 ~ no escape.

"If the anomaly does not stabilise by August — a reasonable expectation based on previous El Niño events — then the world will be in uncharted territory."
https://t.co/ZmPudHc23y

[Jeff Berardelli @WeatherProf]

Look at this flooding in Flor… checks notes… Moscow.

[NEW ORLEANS Creole Chick @CreoleChick]

This! Clean air is fundamental!

[Kelly @broadwaybabyto]

I’m seeing a lot of people newly diagnosed with MCAS (mast cell disorders) drastically altering their diet to a low histamine one.

It’s an important step - but don’t overlook things like indoor air quality, skin care & other triggers.

🧵 of ways I keep my mast cells happy /1