Douglas Edwards 
riverCSC has done a lot to keep the community masked, informed, tested, safe, and accessible.
We are building the future we want into being — please donate if you can spare the funds!
BroadwaybabytoToday a large “leftist” influencer took a screenshot of one of my Bluesky posts about masks and shared it to X/twitter to encourage people to harass me.
It was condescending and mocking, and I spent the entire time having to block and delete comments.
People actually opened Bluesky accounts just to harass me.
This guy has hundreds of thousands of followers, claims to be on the left, and yet spent his day encouraging others to harass a disabled woman advocating for her survival.
This is exactly why I’m shouting about ableism and eugenics every day damn.
We may want to believe it’s only the MAGA crowd that hate us, but unfortunately there’s quite a few eugenicists on the other side of the aisle as well.
We see evidence of this all the time.
Disabled people’s lives are not valued.
We’re talked over or talked down to. Stripped of our autonomy. Not factored into policy decisions. No one fights for us.
Which is why we must keep fighting for each other.
I was tempted to block this guy, but instead I responded calmly and explained my position
I explained that for myself and members of my community, wearing a mask is a matter of literal life and death
I explained that his choice to use me as fodder was causing me harm and robbing me of spoons
I took the high road and stood up for myself while appealing to him to be better than the MAGA crowd he fights against.
I asked him to delete and apologize.
I doubt he will, because I suspect the feelings of a disabled person don’t matter to him.
But at least I tried. I stood up. I said “this is not ok”
I will keep saying it every day until things actually change.
#disabilty #ableism #eugenics #covidisairborne #wearamask #n95s #uspol
The masks ICE agents wear aren’t masks. They’re face coverings designed to hide their identity.
The masks disabled people have been pleading to normalize are KN95s, N95s and other respirators. Which will help protect you from COVID & other airborne threats!
Normalize masking for public health.
#uspol #fascism #ice #abolishice #n95s #covidisairborne #maskswork
notes@PeoplesCDC Where are they now?
People's CDC are still thinking and doing and sharing. Somewhere.
CDC HICPAC Nov 2024 Meeting Concludes with Low Standards of Infectious Disease Protections in Healthcare - The Public Must Respond by Nov 22!
#CDC’s health care infection control committee #HICPAC met on Nov 14-15 unwilling to establish robust, #science-based infection control guidelines, universal #masking, broad use of #N95s
https://peoplescdc.substack.com/p/cdc-hicpac-nov-2024-meeting-concludes
#COVID19 #COVID #Infection #InfectiousDisease
CDC HICPAC Nov 2024 Meeting Concludes with Low Standards of Infectious Disease Protections in Healthcare - The Public Must Respond by Nov 22!
CDC’s health care infection control committee (HICPAC) met on Nov 14-15 unwilling to establish robust, science-based infection control guidelines, universal masking, broad use of N95s
Auscandoc“Relying on #vaccinations as the measure of whether people are likely or not to transmit (#COVID) to vulnerable patients is a very dangerous strategy,” Gregory said.
Instead, he added, it would be best if everyone wore masks in public health settings whenever possible.
Mitigation measures such as properly worn #N95s, #HEPA air filtration, ventilation and avoiding high-risk areas like indoor crowded spaces are “all variant proof,” Gregory said. “No variant has evolved to circumvent an N95.”
PSA for Long Covid folks experiencing mast cell issues for the first time - anaphylaxis is not JUST airway issues. Anaphylaxis can impact all major body symptoms & you can be having an attack with NO skin or airway involvement.
My anaphylaxis is almost always cardiac & GI.
I find that many people (including some HCWs) still associate anaphylaxis with throat closing and hives/rashes. While that may be the typical presentation (especially for food allergies)… patients with MCAS are anything but typical.
My very first anaphylaxis experience started with a sore throat & flushing but no noticeable breathing difficulties. I had terrible diarrhea & stomach cramps, a very low pulse & was pale and woozy. I chalked it up to a bug and tried to rest it off.
I didn’t go to the ER until more than 48 hours later when the sore throat had become so severe I could no longer swallow fluids. At that point I still thought it was strep or tonsillitis & was shocked when triage whisked me into a code room after administering Epi
It turns out I had been in anaphylaxis the whole time - but my body exhibited the cardiac and GI symptoms first. The airway symptoms developed slowly so my body had time to adjust and I didn’t realize how swollen my airway was.
The chart I posted shows all the different ways it can manifest - and it’s important to be educated on the various presentations so you recognize anaphylaxis & can get immediate treatment. Even uterine cramps can be a sign. If respiratory involvement is absent but two other systems are impacted - that meets criteria for anaphylaxis.
I’ve been dealing with MCAS for years and I’m still learning all my triggers as well as the strange early warning signs my body gives me. Lately it’s been a hoarse voice, raised rash on shoulder & severe vomiting. Teeth chattering, violent shaking & slurred speech also common
I share my experiences in an attempt to educate people on the varied nature of MCAS attacks and the fact that anaphylaxis is not always sudden or obvious. Once identified it’s important to treat & be monitored for rebound or biphasic reactions.
Lastly if you have significant cardiac involvement with your MCAS reactions - it’s important to be aware of a relatively rare condition called Kounis syndrome. It’s an acute coronary syndrome caused my mast cells/allergic reactions.
It can cause spasms in the arteries of the heart and possible breaking off of plaques leading to coronary artery blockage. While considered rare - in recent years there’s been speculation it’s more common & simply under diagnosed and/or misdiagnosed.
I keep copies of all my EKG rhythm strips when I need paramedics or the ER for my MCAS reactions. It can be critically important to have them reviewed by an MCAS savvy cardiologist.
If ever in doubt - seek medical attention. Speak to your medical team about carrying an Epi pen and go to hospital if you have to use it. Even if you feel better - rebound reactions can be incredibly severe.
While MCAS can be an absolute beast to manage - medications, lifestyle and dietary changes can make a tremendous difference in quality of life. Patient support groups are an excellent resource for teaching how to identify & and eliminate triggers.
They can also provide emotional support which is critical as MCAS can be isolating & lonely. Remember you’re not alone & reactions aren’t your fault. Even the most careful patient can end up in anaphylaxis & we must give ourselves grace. It’s not our fault - it’s the disease.
#ChronicIllness #MCAS #POTS #Dysautonomia #MastCells #Spoonie #chronicallyill #LongCOVID
#CovidCautious #sarscov2 #maskup #WearAMask #CleanAir #Pandemic #Disability #accessibility #DisabilityRights #N95s #Ableism #CommunityCare #CovidIsAirborne #CovidIsNotOver #Histamine
Heard a quote today that really resonated (unsure who to attribute to)
“If you only have 10% to give and you gave 10% then you’ve given 100%”
For those of us with chronic illness this is so important to remember. Our 100% looks different than other people and that’s OK!
#ChronicIllness #MCAS #POTS #Dysautonomia #MastCells #Spoonie #chronicallyill
#CovidCautious #sarscov2 #maskup #WearAMask #CleanAir #Pandemic #Disability #accessibility #DisabilityRights #N95s #Ableism #CommunityCare #CovidIsAirborne #CovidIsNotOver #Histamine #LongCovid
This time of year is awful for MCAS & POTS patients. While everyone else enjoys the end of a long cold winter - pollen & grasses fill our histamine bucket and warmer weather strains our hearts.
I know it’s Spring when I start having middle of night attacks… my sleep schedule falls apart and I find myself reaching for coping tools. Here’s how I handle those nocturnal attacks.
First of all MCAS isn’t limited to “just” histamine. These pesky cells contain hundreds of mediators that can wreak havoc in your body. Histamine just happens to be the one that’s most well known. It also happens to be the one that loves nighttime parties.
When too much histamine builds up in the body & the brain… it gets released in the early hours of the morning. Many people may never notice this occur - but if you’ve got MCAS you’re likely more than familiar with the aggressive & rude wake up.
It’s not uncommon to wake up tachycardic and feeling panicked - covered in sweat, wheezy, itchy and nauseous. This happened to me every night during spring for YEARS before I made the connection. Now that I know - there’s some things I do to make it slightly more tolerable.
First - natural fibres in bed! I really can’t stress this enough. You want your pajamas and bedding to be a material that breathes. Cotton, bamboo and linen are all good options. A zippered mattress cover that’s designed for allergies will help as well.
When I know I’m at my worst - I sleep with a towel underneath me in bed and a clean towel on the opposite side. I also keep a change of clothes in bed with me. This way if I wake up soaked and I’m too dizzy to get up - I can change in bed & roll onto the dry towel.
Don’t neglect your pillow either! Having a pillow cover that’s designed to keep dust & allergens out will help - and I wash my pillowcases every few days. I also recommend having an air purifier in the bedroom with the best CADR you can get (clean air delivery rate).
You want as much filtered air being circulated while you’re sleeping as possible. I avoided this for the longest time and was really surprised at the difference it made when I finally put a HEPA in my bedroom.
Be prepared for hydration needs! I keep a bottle of water on my nightstand & another (sealed) bottle in bed. When I have a particularly bad attack my already low BP drops further - making sitting up dangerous. A water bottle within reach helps me avoid fainting.
Water is key to flushing out histamine and other mediators - so if possible I drink 500ml before I attempt to go back to bed. I also keep rescue meds on the nightstand - but I make sure they’re portioned out in the exact “safe” dose. This avoids any groggy dosing errors.
If you’re reaching for the Benadryl (as many of us do) be aware of the Benadryl rebound. While it’s a very effective antihistamine for an MCAS flare - it suppresses the histamine without actually removing it from your body. When it wears off the flare CAN come raging back
If I resort to Benadryl I increase my water intake as much as I can tolerate to offset the rebound - but ideally I try to control reactions with a mast cell stabilizer versus an antihistamine. Those are meds like Cromolyn & Ketotifen.
Depending on the flare - I can wake up burning hot or freezing cold. I keep an extra blanket on opposite side of bed for when I’m cold - and an ice pack wrapped in a cooling buff so it’s still frozen if I’m hot. Ice pack to the back of the neck can also help break tachycardia
If I’m extremely tachycardic and the ice pack doesn’t work - I flip myself around in bed and put my legs up the wall/headboard. This helps calm the autonomic nervous system. Deep belly breaths while in this position are very soothing - just don’t fall asleep that way!
Mast cells love to wreak havoc on the bladder & bowels - and unfortunately more often than not an emergency trip to the bathroom ends up being needed. If possible I drink water BEFORE getting up & do as many ankle pumps as I can tolerate. This staves off fainting 50% of time
If you live alone or your bathroom is far from bed… consider a bedside commode. It’s not something we LIKE to think about but it reduces the risk of falls & its easier to get back to sleep if you’re not struggling to walk to the bathroom. Accessibility tools are our friends! 1/2
#ChronicIllness #MCAS #POTS #Dysautonomia #MastCells #Spoonie #chronicallyill
#CovidCautious #sarscov2 #maskup #WearAMask #CleanAir #Pandemic #Disability #accessibility #DisabilityRights #N95s #Ableism #CommunityCare #CovidIsAirborne #CovidIsNotOver #Histamine
Canadian here so bear with me because I don’t fully understand US gun laws (nor do I understand their attachment TO guns).
What I do know is whenever there’s a mass shooting someone will bring up stricter gun control and the Right wing gun lovers shout “my freedom! You can’t take away my right to protect myself!”
Yet we are seeing a U.S. State attempt to criminalize the wearing of medical masks in all public spaces. Something that is quite literally “personal protective tool”. Why doesn’t our freedom to protect ourselves from infection as much as their freedom to carry a gun?
I can’t see any scenario where someone else would be harmed by an N95 - the same is NOT true for any gun. Yet one is being criminalized and the other isn’t.
I sincerely hope we start hearing more people speak out against criminalizing medical masks if for no other reason than the violation of freedom and bodily autonomy. You don’t have to care about Covid to understand that some people need to wear masks.
It is a very sad example of the state of the world when a person can walk into a pharmacy or grocery store with a gun - but not wearing a medical respirator DURING A PANDEMIC
#CovidIsAirborne #CovidIsNotOver #CovidCautious #sarscov2 #maskup #WearAMask #CleanAir #Pandemic #Disability #accessibility #DisabilityRights #N95s #Ableism #CommunityCare #Eugenics #MaskBans