Shoutout to my fellow maskers!

“…health as discipline, illness as lapse.” A little too close to home.

Excuse me as I build a castle out of all the bricks they threw at me #NEISvoid #ThisISMeTrying #TaylorSwift #ThisMetaphorWorks

As I scream into a new void: - Is it the result of the vaccine or the Covid-19 infection, itself? - Is that idea practical or fiscally responsible? - How much testing do you think is actually happening? - Why do you only care about those who were hospitalized? #ACIP #Covid-19 #LongCovid #WearAMask

It’s great that people want to reuse/retool existing medication or look at drugs in development… but if insurance companies won’t cover them, all the drugs in the world won’t help. #LongCovid #Covid19 #LongCovidRoundtable #PatientsArePeopleToo

LADIES! NEED MONEY FOR RENT? Applications for my nonprofit’s Mother’s Day 365 housing relief program open for September on 9/7-9/13 at ThurmanPerryFoundation.org

““Now, if people with long COVID and severe PEM are largely stuck in their homes or beds and excluded from trials, is the long COVID research as it stands representative of the full population of people with long COVID?” ⬅️⬅️⬅️ Say it louder for the people in the back!!! #Covid #LongCovid #PEM #Stats

haha oh no

Um, I managed to stop working before I felt like death warmed over… please applaud. I then spilled my drink behind my bed and my side table… please cry. #PEM #LongCovid #pacing #ITried #ButWhy

“Build your evidence base outside the medical system. Keep detailed symptom records, connect with patient communities, and research your condition independently. This creates psychological anchoring that prevents dismissive interactions from completely destabilizing your self-knowledge.” 👈

ALMOST DIED: During the pandemic I almost died. I now have long COVID. I still wear my mask wherever I go. Depending on where I am I have a mask with me always. On occasion I get severe pains and I frankly never want to get sick again. I mask up so I can continue to stand up. Think about all of us.

If you're healthy/abled, it's hard to fathom the incalculable toll it takes on disabled people to have to constantly fight for our right to stay alive and in as little pain as possible.

Please, use Alt Text. Turn on the reminder setting here and make life better for all !! #AccessibilityMatters #AccessForAll #WCAG #WAI #A11Y #DigitalAccess #WebDev #InternetForAll

Please consider a donation so that parents currently incarcerated in Cook County Jail can still give badly needed school supplies to their kids. bit.ly/Back2SchoolChi

📢 THIS ‼️

#DisabilityPride #InvisibleDisabilitiesAreRealDisabilities

“A deeper question is what constitutes a ‘rare’ disease,” commented Zha. “Are certain diseases actually rare, do they just more frequently affect women, people of color, transgender patients, or patients from other cultures?” 👆👆👆

A large part of why your ill friends are low-key pissed off all the time is we're forced to interact with quite literally like ten times more sludge than you, all the time, nonstop, with only a fraction of your energy to deal with it all. It feels like drowning, when we should be resting.

📚💙 This quote will resonate & reach out to so many women with chronic illness. We know the system is broken but it impacts our lives in profound & traumatic ways. It's from the Healthcare chpt in 'Who Wants Normal?' by @francesryan.bsky.social Powerful & validating. #pedanticzebra

Republicans keep saying the “genuinely disabled” don’t have to worry about losing Medicaid. All disabilities are genuine. You also need healthcare to get a diagnosis. To get the paperwork done. To “prove it”. They’re ensuring people get trapped in red tape loopholes so they can’t get care.

I’m all for people posting impassioned statements, especially when they speak up courageously or apologize for a past wrong. But please, PLEASE, stop using center aligned (or justified) text. It’s not #accessibility best practices. #DisabilityPride #W3C #WebAccessibility #ShowYouCare

it would be so fun and funky fresh of my joints to support themselves and not hurt !!!

As I scream into the void (a bullet pointed list), - Why does it matter that people had underlying medical conditions? - Why do you only care about those who were hospitalized? - Why do you only care about severe cases? #ACIP #LongCovid #Covid-19 #WearAMask

It’s never too late to start masking again. Covid isn’t over. Measles is spreading rapidly. We’ve got anti-vaxxers in charge if public health. There’s a huge community of support here if you want to learn more about respirators. You won’t be the lone masker, I promise!

Hey, Dem Members of the Senate and Congress!!!

Lifeguard at the beach thought sis was “waving to a friend on the shore”. Yeah, no. #HeadOnASwivel #SafetyFirst

Trans kids deserve better. Trans kids deserve kindness. Trans kids deserve to be who they are. Most importantly, trans kids deserve the time to just be kids without having to be someone else’s agenda.

I am a big supporter of determining your own baseline (for most tests). Within normal limits (WNLs) “cover” all adults (regardless of age, sex, etc.) 👇THIS👇

A message for others and a message for ourselves, too.

Many of us young chronically ill people have had issues for the majority of our lives… So when you call us “too young”, it really isn’t very meaningful because we have already lived with these conditions for decades, and they take their toll.

Like sands through the hourglass, these are the cracks in my brain

Too much work without a break makes my brain go mush…

Include disabled people in resistance efforts. We are skilled at fighting systems of oppression. We fight against ableism & eugenics every day. We’re masters at contingency and emergency planning because we have to be to survive. Wear masks, make meetings accessible & inclusive.

Is there any proof that NOT having a “view password”/“show password” button makes your password any more secure? Because to me, not having it seems like an accessibility issue… #AccessibilityMatters #AccessForAll #WCAG #WAI #A11Y #DigitalAccess #WebDev #InternetForAll

Can someone tell me why I’m insisting on using this straw as a spoon when there are oodles of spoons not 10 feet away in the kitchen…?

*ahem* Covid is not over. And please wear a mask. No me gusta. #WearAMask #CovidIsntOver

If we want culture to thrive, not just survive, it’s on all of us now.

I use this as an example to advocate for taking a break or self care when I see others getting really stressed, too. #GoodAdviceIsGoodAdvice

Excited to see there are virtual events, as well. Just because we can’t be there in person doesn’t mean we don’t have a lot to give. #NEISvoid #LongCovid #WearAMask #CovidIsntOver #HandsOff mobilize.us/s/gx8WNV

And I’m sure this is the floor, not the ceiling.

It is a mistake to not have a human-in-the-loop (HITL). We should not have “[e]xpertise without experts.” The abdication of responsibility under the guise of ‘black box’ models (AI), manipulated and invariably used to “justify what a decision maker wants to do” is a step too far. #AI #ML #HITL

Especially important to remember today, #LongCovidAwarenessDay

Long Covid patients that I see are getting younger. Avoid infections, breathe clean air, wear a respirator. Covid is airborne.There’s no treatment for Covid or long covid. Covid damages organs, immune system, can maim and cause death. Mitigate! To LC patients- I see you. We stand together.