#respirators — Public Fediverse posts

#CDC guide to #Elastomeric #Respirators

- Elastomeric respirators can be used to protect against gases, vapors, or particles.
- Elastomeric respirators are reusable and can be cleaned and disinfected.
- Elastomeric respirators require fit testing.

https://www.cdc.gov/niosh/ppe/respirators/elastomeric.html

There's a reason I want an OmniMask.

~ it's so I can be the coolest doomer at school ~

https://throne.com/mxverda

But also because I want more people to feel comfortable being around me:
both the immunocompromised or carers,
and people who read lips to help with Auditory Processing Disorder, loss of hearing, d/Deafness;
or anyone who just feels more comfortable seeing whole faces.

I definitely don't understand the "I want to see your FACE" people,
but I don't generally set out with the intention of unnerving people
(until they upset me and I've tried conflict resolution skills, but unfortunately haven't fully concluded it. THEN I get ornery!)

#mask #masks #respirator #MaskMeansRespirator #respirators #MaskBloc #PPE #accessibility #Accessible #LipReading #EaseOfAccess #Access #universal_free_internet_access #AccessToInformation #PublicAccess #Health #health2025 #Healthy #HealthyHabits

“If you’ve been fighting for Covid mitigations for the last five years - you more than likely saw this coming. It was painfully obvious when the great unmasking occurred that many people on BOTH sides of the aisle didn’t care about the “vulnerable”. Didn’t care about community or protecting their neighbours. Didn’t care about anything other than their own ability to go to brunch, travel, socialize and get ‘back to normal.’

I’m not saying people should have shuttered inside their homes forever. None of us are. But they should have kept masking. There was no reason to stop. Respirators are highly effective at stopping the spread of Covid. The vast majority of people CAN wear them. We have mask blocs all over the world to provide masks to people who can’t afford them. It’s a simple thing you can do to protect yourself and - perhaps more importantly - protect others.”

If you missed my latest - it’s about the U.S. election, disability rights, eugenics, fascism and how we got to where we are. Perhaps more importantly - it’s about what comes next.

https://www.disabledginger.com/p/how-did-we-get-here-and-what-comes

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans #fascism #election2024

Even if you don’t care about the health of others - you should be masking RIGHT NOW to protect yourself.

Disabled people have been telling you for years there is NO help when you become chronically ill.

This won’t improve in the next 4 years. Protecting your health is paramount.

Understand that those of us who’ve been advocating for Covid mitigations for years are exhausted. We’re frustrated. We’re fed up.

Many of us don’t have our health. We’re terribly sick and choosing to spend our limited energy trying to protect people who hate us.

We aren’t doing this for fun. We’re doing it because it’s necessary and no one else is bothering.

We know that there’s no exceptions - that once you lose your health your life changes forever.

We want to protect YOU despite the horrible way you’ve treated us for years.

Consider that the next time you’re tempted to yell at someone for masking or make fun of someone for trying to protect others.

We WANT to be wrong - but we know we’re not.

You NEED to be right because the alternative is too hard for you to face.

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans

For anyone who’s struggling right now and needs a reminder - you are not expendable.

A person’s worth should never be determined by their health or their ability to be cogs in the machine of capitalism.

To everyone else - if upon hearing that someone was disabled or killed by Covid your first reaction is any of the following - you are part of the problem. You’re telling people their lives don’t count. That protecting them is too much of an inconvenience. That they are expendable.

- They were sick anyways
- They were old
- How many co-morbids did they have?
- Hospitals have always been unsafe places
- They were going to die anyways

Despite what you’ve been incorrectly led to believe - COVID is a threat to everyone. We are ALL vulnerable.

The people you are looking down on did nothing wrong. They don’t deserve the suffering they’re going through. Disability and chronic illness are NOT a moral failing.

Perhaps most importantly - you won’t be the “exception” when it happens to you. We are screaming about the lack of help for Long Covid for a reason - listen to us. Wear a mask. Clean the air. Test and isolate. Stop letting the virus win.

https://www.disabledginger.com/p/how-did-we-get-here-and-what-comes

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans

Disabled people have warned for years that embracing eugenicist Covid policies and discarding vulnerable people (and children!) would lead to escalating fascism and destroy what's left of public health and common decency.

It's simply not possible to make a conscious choice every day to put other people's lives at risk and not have it impact you in a profoundly negative way.

Years of politicians and leaders telling us that the vulnerable don't matter, that they will fall by the wayside, that they died because they were 'sick anyways' has changed us. And not in a good way.

It's time to think about what comes next. How we can resist, unite and fight back. We can't keep going down this road.

The hatred may have started with disabled and marginalized people - but it won't stop with us.

https://www.disabledginger.com/p/how-did-we-get-here-and-what-comes

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans

People spend their lives running from suffering. Doing whatever they can to avoid feeling pain. The idea of “forever suffering” is terrifying to them.  I think this fear is behind a lot of the disdain we see directed at disabled people.

We remind others that suffering can be permanent. That it can’t always be outrun. 

We exist in the grey. Our illnesses won’t kill us - but they also won’t ever get better. There’s no cure on the horizon. No “are you better yet?” 

This reality scares the crap out of people.

As such - they pull away from us. They abandon us or treat us with such disdain that we walk away from them. The ones that stay often expect us to hide how sick we are. To plaster a smile on our face and say we’re “fine” so that they don’t have to feel uncomfortable. 

When they ask how we’re feeling or if we’re “any better”… they don’t want to hear the truth.  In fact - if you tell them the truth you could find yourself facing a lecture on “positive thinking” or how you just need to “try harder” and you will suddenly overcome your illnesses.

People are unable or unwilling to face the realities of chronic illness - so they make it harder for us to face it as well. They treat it like it’s our fault. Like we did something to become ill or like we could get better if we “really wanted to”.

They will push our boundaries, gaslight us and yes - put us at risk for covid.  So this is your reminder that it is ok to set and hold boundaries. It’s ok to protect yourself.  If someone won’t be there at your worst - they don’t deserve you.

https://www.disabledginger.com/p/we-dont-do-sick-if-you-cant-hide


#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans

If you’re dealing with a COVID infection - remember it’s NOT your fault.

Those of us trying to avoid COVID & break chains of transmission have been failed by governments & public health. We’ve been left by the wayside.

It’s hard to avoid when NO ONE else is even trying.

I’m always sad when I see people blaming others for getting covid (or worse - blaming themselves).
There’s only so much a single person can do when covid is everywhere and most people refuse to acknowledge it (let alone mask or stay home)

This is extra applicable if you have young children or work in a public facing role where you’re exposed to large numbers of people every day.

When the collective whole gives up & decides to accept constant infection & reinfection - it becomes harder for those of us still trying.

Remember that every infection avoided or delayed is a win. The less times you get COVID - and the lower your viral load - the better.

Don’t give up - and never forget that if you’re masking - you ensured you didn’t pass your Covid infection to someone else.

You did the selfless thing. You protected other people. You made sure to NOT be responsible for someone else’s death or worsening disability.

That alone should make you feel proud - and negate any potential feelings of guilt or blame.

We need to do more to lift each other up and support our allies in this fight - because we don’t have many left.

Share advice, provide encouragement and don’t shame people when they get sick.
Also - can we stop shaming people for their choice of mask?

I see a lot of judgement towards people wearing surgical masks and/or earloops.

I consider anyone in a mask to be a win. These are people who are reachable - who would likely welcome information on how to better protect themselves.

They’re TRYING to do the right thing. We’ve been fed a steady diet of misinformation or no information for years.

If you’re involved with the Covid cautious community here - of course you know a surgical mask provides little protection.

But not everyone has this information - and many don’t have the time or the inclination to go hunting for it.

There’s also the matter of cost. Respirators are more expensive. Head strap and elastometrics cost even more.

Many people can’t afford a high quality mask - especially if they have to be out of the home 8+ hours every day

I’m incredibly grateful for my N99 respirator but will readily admit the only reason I can afford it is because of how little I leave my home.
I couldn’t afford to wear one every day. Covid IS a social justice issue.

So what can we do about it? Lots of things! If you have the means to carry extra N95s - offer them to people you see in a surgical mask. Tell them why a respirator offers better protection.

Find and support your local mask bloc. Donate masks if you can.

You can also donate tests to people who can’t afford them. Share or donate to people trying to raise funds for at home NAAT testing so they can keep themselves and their communities safe.

Keep pushing for mandatory masks in healthcare, free respirators and tests and clean air in all public spaces.
Educate people who want more information on how to keep themselves covid free.

Lastly - support your allies in this fight. Lift them up and be cognizant of their energy levels.
Don’t tear people down unnecessarily.

We’re almost five years into this and people are rightfully exhausted. We need to stick together in order to face another year

If you’re struggling and need advice on how to up your mask game, how to find a mask bloc or charity or just need support to stay covid safe - feel free to leave a comment 👇🏼.

Lots of informed people here who can help you find the best protection for your individual circumstances!

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans

I miss the days when I could go to the ER without fear of Covid infection, setbacks, MCAS attacks & trauma.

I miss the blissful ignorance of believing the hospital will “fix things” instead of making it worse.

It’s agonizing going through a flare knowing safe care doesn’t exist.

Also if one more person says “just go to the hospital” I’m going to scream.

The hospital for disabled people is NOT the same experience as non disabled people. Period.

I have to carefully consider if my flare is even something they CAN or WILL help with - and then weigh the covid risk too.

It’s terribly unfair but it IS our reality. Going to the hospital is not a decision we make lightly - and oftentimes there’s nothing they can do either.

Chronic illness has no “easy fixes”. Understanding that doesn’t make the pain and suffering any easier to bear though:

https://www.disabledginger.com/p/i-wont-go-to-the-er-unless-im-literally

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans

When I was first diagnosed with MCAS I thought “a condition I can control!”

I genuinely believed that since there were clear & obvious triggers - I could put in the work, overhaul my life and be free of attacks.

When a patient plans - mast cells laugh.

I threw myself into research trying to learn how to adopt a low histamine diet, clean my air and change my body care and cleaning products.

I (falsely) assumed that if I made enough changes - sacrificed HARD enough - I wouldn’t have to deal with flare ups.

It was exhausting. Many of the changes DID help. A low histamine diet, cleaner air, a proper med and supplement schedule and non toxic cleaning products all helped to reduce my overall “bucket” so that my symptoms were less severe.

The problem was - I continued having attacks. From minor attacks to full blown anaphylaxis - no matter how much work I put in the attacks didn’t stop.

It was incredibly frustrating - and I began tracking everything I ate, used or did in an effort to find patterns.

In the end I realized that sometimes - there are no answers. “Putting in the work” doesn’t guarantee you won’t have attacks.

It’s a help - and we should do whatever we can to minimize our symptoms - but chronic illness (and especially MCAS) doesn’t care about your plans.

I had to learn to let go. Constantly blaming myself, over analyzing every situation and trying to nail down exact triggers was exhausting me.

It wasn’t helping my physical health and was destroying my mental health

At a certain point - we have to accept that chronic illness can be wildly unpredictable - and flares are NOT our fault.

Setbacks happen - and the best thing you can do is give yourself grace and remember that the pain WILL pass.

This applies to Covid as well. I see far too many people who are covid cautious being blamed for their infections. Being grilled as to what their exact precautions were as people try and exploit a perceived weakness somewhere.

This isn’t helping.

If you’re masking and doing everything you can do to avoid covid - you’re doing a great job. If you got infected anyways - that’s the fault of our institutions and governments who’ve allowed the virus to run rampant and encouraged people NOT to take precautions

Just like we have to let go of trying to find every possible trigger for our chronic illness - we have to let go of the blame when people get infected with Covid.

Blame, shame and guilt aren’t helping anyone - and they aren’t good for your health.

To be clear - “letting go” doesn’t have to mean giving up. It doesn’t mean you stop trying to improve your health or stop mitigating for COVID.

It simply means you stop fighting the reality that you’re sick. You lean IN to the conditions and try and find ways to accommodate

It’s a difficult thing to do. I’m still having to work at it every single day. But it’s worth making the effort.

Society, HCWs and even friends & family can be cruel to those with chronic illness - we don’t need to be cruel to ourselves.

Which brings me to my third and final article in my series on living with MCAS - Learning to Let Go.

This post explains how I learned to be kinder & gentler with myself and accept that setbacks WILL happen and they’re not my fault:

https://www.disabledginger.com/p/learning-to-let-go-how-to-accept

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#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans #MastCellActivationSyndrome #mastcells #histamine #lowhistaminediet #mastocytosis #anaphylaxis

Great video from Matt McGorry about the devastating impacts of Long COVID and how even a “mild” infection can leave you chronically ill.

He also says he was hesitant to speak out - because there IS a stigma associated with Long COVID.

We must change that.

He goes on to explain that while his initial infections would be considered “mild”… they’ve still left him with debilitating Long Covid.

It’s critical that people understand this. Too many think that hospitalization and/or death in the acute phase are the only negative outcomes.

Note that in its moderate and severe stages - Long Covid and other comorbids can have a quality of life equivalent of stage four cancer.

I had clipped short portions of the video to share on here - but my internet is currently giving upload speeds less than 1mbps and it keeps throwing errors. That said it’s an excellent video and you can watch the full thing on his IG here:

https://www.instagram.com/reel/DBra_TSRhpz/?igsh=MWMwMzZwY25qMDl6aA==

On a personal note I want to thank Matt for his honesty and transparency. We need more of it.
We have too many celebrities and people with platforms saying "mystery illness". Too many people unwilling or unable to say the word covid.

With transparency comes greater awareness.

I wrote an article during the Olympics about the phenomenon that is people proclaiming they "don't know anyone with Long Covid."

There's 400 million people suffering from the condition. I assure you - you DO know someone. People are simply hiding it or unaware they have it:

https://www.disabledginger.com/p/covid-and-the-2024-olympic-games

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans

When you become chronically ill - it’s tempting to try and outrun your suffering. Play through the pain. Push your body back to “normal.”

It doesn’t help that we constantly face ableism and discrimination from medical professionals, friends and family who are often quick to tell us it’s “not that bad” and we should just “try harder.”

You can’t “try harder” your way out of chronic illness. Pushing through and denying your body the rest it needs only leads to more suffering.

It took me a very long time to learn this. Letting go of the guilt, the doubt, the internalized ableism….. it’s not an easy thing to do.

My article on how I finally learned to Let Go and start accepting and accommodating my disabilities:

https://www.disabledginger.com/p/learning-to-let-go-how-to-accept

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans

“You could be doing more.”

“Is the pain really THAT bad? I’m sure you could get out of bed if you really tried.”

“Why aren’t you going to that party/dinner/event? Everyone thinks you’re lazy and antisocial.”

“Do you really need to stay home from work? You’re being lazy. Force yourself to go in.”

“Do you really need to go to the hospital? It’s not that bad - just push through.”

“See? The ER doctor didn’t even help you. It was stupid of you to go in. There’s nothing wrong. Just try harder.”

This used to be my harmful inner monologue.

I’m sure all of us with chronic illness have said similar things to ourselves.

It’s incredibly hard to adapt to becoming disabled - and we often gaslight ourselves and push our bodies to their breaking point.

We run from reality.

It’s understandable - no one WANTS to be chronically ill. We didn’t grow up hoping to spend our lives stuck in bed dealing with unrelenting pain & fatigue.

Chronic illness can and does strike out of nowhere - catching you off guard and forever altering the course of your life.

Of course that’s a difficult thing to accept.

Often we have doctors, friends and family downplaying our situation - telling us to “just try harder” or that “other people have it worse”.

Who in the chronic illness community hasn’t heard “have you tried yoga?” Or “just be glad you don’t have X condition”?

The reality is people have a difficult time facing chronic illness. This doesn’t just apply to patients. Those who love us can struggle to accept it as well.

Watching someone lose their health is hard. Knowing there’s no hope of improvement? It scares people.

We understand acute illness. You get sick or injured, you rest and then you get better. Things go “back to normal”.

We also understand terminal illness. We are able to process a condition that will gradually get worse and then take your life. /6
Where we struggle is with chronic illness. Existing in the grey. People HATE the grey.

They find it hard to imagine that you could become sick with something that will completely ruin your quality of life - but won’t kill you.

They can’t imagine that the suffering could continue for months, years and even decades.

So they deny it. They minimize it. They tell us to try harder, think positive & play through the pain.

We internalize those messages - and before you know it - you’re doubting yourself.

I did this for years. Constantly telling myself it wasn’t really “that bad”. I just needed to try harder, exercise more, avoid the hospital, think positive etc etc.

It didn’t work. You can’t “try harder” your way out of chronic illness. It doesn’t work that way.

Society is already so cruel to people with disabilities - we don’t need to be cruel to ourselves.

It took me a long time to realize this. To let go of the blame and accept that I WAS severely ill. It wasn’t my fault, I hadn’t done anything wrong.

It was time to put the “coulds” and the “shoulds” to bed and find a way to move into a place of kindness and acceptance.

It was time to stop running from my illnesses. To stop trying to figure out every single flare. To stop putting myself down.

It didn’t come easy. In fact I still struggle every day.

But I’m putting in the effort. The amazing thing is the more effort I put into letting go - the happier I am.

Instead of wasting energy on blame - I’m finding ways to adapt & accommodate my diseases.

I’m managing to carve out moments of peace and calm - which when you’re chronically ill can be incredible rare.

Our bodies are unreliable - constantly throwing us curve balls, flares and setbacks.

We NEED the calm wherever we can find it.

Which brings me to my third and final article in my series on living with MCAS - Learning to Let Go.

I hope this article helps other people find their own path to acceptance, accommodation and peace:

https://www.disabledginger.com/p/learning-to-let-go-how-to-accept

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans

The early days of the pandemic were scary for everyone - but for many disabled people there were also rays of hope.

We saw the world become more inclusive seemingly overnight. Things we had spent years begging for - like telemedicine and remote work options - became possible. We made it easier for those who are housebound to access the services they need. We checked on our neighbours. We worked together to protect one another. We stopped vilifying and gaslighting housebound people like me - because suddenly EVERYONE was housebound.

I also had hope that we were finally going to make real progress on chronic illness. That Long Covid would be “too big to ignore.”

That we would start being proactive with our health and work towards keeping people healthy and really HELPING those who were chronically ill.

I genuinely still can’t believe that 400 million people are suffering from Long Covid. The numbers are growing every day and yet we do nothing to stop it (and very little to treat it).

No progress has been made on the comorbids either. I had POTS and MCAS before covid - and my treatments haven’t improved at all. In fact it’s harder to access the medical care I need because specialists treating these conditions are so overwhelmed by the rapid influx of new patients with Long Covid.

I have empathy for those who believed they would be the exception. Who thought that IF they were unlucky enough to be disabled by Covid - help would be there for them. Even though it’s never been there for the rest of us.

All these people are going through a very rude awakening right now - they’re being forced to confront the reality that patients like me have been dealing with for years.

No one is coming to save us. Our “sick” is permanent. No one is the exception.

Just like I have to deal with the pain of having the hope of a more inclusive and caring society ripped away - these newly disabled people have to deal with the pain of realizing they are in fact disabled. That they were lied to when they were told they didn’t have to worry. That they aren’t getting better.

It’s a hard adjustment - one that I hope The Disabled Ginger can help with.

In the meantime the best thing we can do for our own health and the health of those around us is prevent the spread of Covid. Wear a mask. Clean the air. Test and isolate when sick. Get vaccinated. Don’t take your health for granted.

Even if YOU don’t think you’re high risk - it’s an airborne virus. You could pass your “mild” case to someone like me who ends up further disabled or dead.

We can do this - but we have to work together. “You do you” isn’t working. We have to remember what it felt like during those first few months of 2020 when we tried to work as a collective whole. Where we protected the vulnerable, took the virus seriously and made society more accessible and inclusive.

We can do it again. We just have to decide to try.

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans

It’s been a month since Tinu’s passing and we still don’t have mandatory masks in healthcare. Something Tinu both NEEDED & fought for.

Someone with Long Covid going through chemo deserved to be SAFE while getting her care.

She deserved NOT to be given COVID again

There are many others like Tinu. We can’t know how many we’ve lost - but what we DO know is we will lose more if we don’t start mitigating Covid - especially in hospitals.

We know how Covid is spread. We know how to stop it. Yet we still have doctors saying they don’t want to mask because they’re not worried about THEIR risk. They’re forgetting the fact that the patients feel differently.

Patients care. Patients are putting their full trust in you to make them better. They’re trusting you NOT to make them worse.

Hospital acquired Covid has a fatality rate around 10% - and still we do nothing. In many instances we act like it’s just “the cost of doing business”. It’s not and it should never be acceptable to contract covid in the hospital.

I’ve said it once and I will say it again - if you’re sick enough to need the hospital the last thing you need is Covid.

If you’re a healthcare worker - please wear a mask. You don’t have to wait for a mandate to do the right thing. You can choose - right now - to stop chains of transmission. You can show patients that you’re on their side and committed to ensuring they get through their hospital visit without contracting COVID. You can tell us that our lives and long term health matters.

Hospitals, healthcare workers and society all failed Tinu. She fought so hard - for herself and for others. She knew that it would likely be hospital acquired Covid that killed her - and she did everything she could to raise awareness so it wouldn’t happen to anyone else.

Let’s keep fighting in her honour. Clean the air, ventilate, make masks mandatory, provide free respirators and isolate when sick. It’s not hard. We can do it.

https://www.disabledginger.com/p/a-plea-to-maskless-healthcare-workers

#forTinu #CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans

Before you tell a disabled person that they need to “just make the healthcare worker mask”… please understand the imbalance of power that exists in hospital settings.

We can’t “just make them” do anything. If they refuse -our options are to take the risk or go without care.

There’s little recourse when a HCW refuses to mask - there’s almost NO recourse that exists in the moment.

You can file a complaint after the fact - but if the care you require is urgent or an emergency - that won’t help you

Imagine you’re taken to the emergency room with an urgent (or life threatening) issue. The doctor comes in and refuses to wear a mask.

Do you walk out? Throw a fit? These are not good options

Even if you manage to keep your composure and strongly advocate for them to reconsider - the longer you argue the more potential virus you’re being exposed to.

The more you “annoy” the staff - the greater the odds of retaliation or reduction in care.

This isn’t like telling a friend or a colleague to mask. The dynamic is completely different.

HCWs have the ability to help you or harm you. You want them on your side.

A note in your chart indicating you’re anxious, difficult, non compliant etc can follow you around and impact all your care going forward. Getting charts corrected and notes removed is a time consuming and difficult process

As a result many patients don’t push the issue. They delay medical care as long as possible and then just cross their fingers they will get a compassionate HCW when they do finally go.

These delays can also cause harm - and shouldn’t be necessary.

Hospitals have never been terribly safe places. They’re where the strongest and most resistant bugs thrive. They’re also where the sickest and most vulnerable people are.

At least before Covid it felt like hospitals were TRYING to prevent infection.

These days it’s as though any amount of infection control is seen as weak. People are actually bragging about how many times they’ve had Covid or about the risks they’re taking with their health. Staff aren’t masking even around babies, cancer & transplant patients

We have to change course. Our healthcare systems could barely handle the amount of chronic illness they were facing before Covid - they certainly can’t handle the constant influx of disabled patients and staff that Covid is causing.

This is why we need mandatory masks in healthcare settings. The responsibility to keep themselves and others safe should NOT fall on the vulnerable patient.

Many are unable to advocate for themselves - and others are unable to mask.

Mandatory masking protects everyone

Lastly - the solution to this problem should not be “don’t go to the hospital”. It’s not right to make ANY patient feel like they’re wrong for seeking care. Like they’ve somehow “failed” if they end up with Covid.

Until you’re facing a life threatening emergency or serious health challenges - you can’t possibly know what you would do.

Is it scary to go to the hospital right now? Of course. Is it also necessary? Absolutely.

Patients should never be blamed for needing care or for being unable to get HCWs to mask. The system is failing us - we aren’t failing each other.

If you need the hospital - you have all my love & support. It’s impossibly hard - and I will keep fighting to make it better.

As long as hospitals refuse to do what’s right to prevent COVID (hello clean air & mandatory masking)… the onus is unfairly on the PATIENT to avoid COVID.

My guide offers tips to reduce your risk of hospital acquired COVID (and other HAIs)

https://www.disabledginger.com/p/how-to-stay-covid-safe-when-in-hospital

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans

Many disabled and chronically ill people find themselves labeled “difficult” or “non compliant” simply because they’re advocating for what they need.

Some examples:

😷 you request staff wear a mask

😷 You decline to remove your mask unnecessarily (ie for an oral temperature check that could be performed other ways)

😷 You decline a specific drug and/or treatment because you know it will harm you (example - fluoroquinolones are contradicted for EDS patients and not all doctors know this)

😷 You push for additional testing because you feel something has been missed

😷 You request a med be administered a different way (example - a slow drip over 30 min instead of pushed all at once - VERY important if you’re blood pressure is unstable and/or your prone to anaphylaxis)

All these examples are GOOD advocacy and should NOT be considered “non compliant”.

If you’re a healthcare worker - please be careful when you choose to use this term. It can follow us around and have devastating impacts on the care we receive.

Try to reframe how you look at the patient - work WITH them instead of working AT them. We are the experts in our bodies.

You may have the medical degree - but if we’re saying “No” to something there is probably a very good reason.

Listen before you judge us.

To all my fellow non compliant patients - never forget that it’s NOT your fault if things go sideways when you advocate for your personal safety. It is your right and no one will fight harder for you than … you!

For more on advocacy, tips and tricks for the hospital, how to stay covid safe and how the hospital experience is different for those who are disabled or chronically ill - my five part guide is here:

https://www.disabledginger.com/p/a-five-part-guide-to-accessing-healthcare

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans

Back when masks were still mandated in hospitals - I had to go for an echocardiogram. It was being done in a clinic for HIGH RISK heart patients.

I assumed that meant I would be well protected - only to end up having to fight for my own safety multiple times.

First - if you’ve never had an echocardiogram - they can last approximately 45 min and during that time the technician is VERY close to your face. You have to do a lot of deep breathing as well.

It is certainly not a low risk activity.
As such I made sure I was wearing my fit tested N99 mask AND wore a face shield for extra protection.

I’m immune compromised with heart issues - I need all the help I can get.

The shield keeps me from touching my face and protects me if someone coughs or sneezes on me.

I arrive at hospital & am forced to stand in a crowded line of people waiting to be screened.

They were asked standard questions like “have you travelled outside of Canada” and “do you have a fever?”

We know both are woefully inadequate at determining if someone has Covid.

I watched as people were forced to remove their own mask and put on the hospital provided surgical mask (yes - even people in respirators).

There were three people doing the screening - so that’s at least 3 patients at a time taking off their masks.

When it’s finally my turn I calmly tell the screener that I’m wearing an N99 and not comfortable switching masks.

They tell me I have no choice because they don’t know if my mask is “contaminated” or “counterfeit”.

Thankfully I was prepared for this and produced the box showing that my mask was NIOSH certified. I also pointed out a mask is no more “contaminated” than my shoes, clothes or any other article of clothing AND that my shield prevented me from touching it.

Not good enough. They said if I wouldn’t change my mask I would be denied entry.

I have no immune system. Im wearing a mask that affords me 99% protection - while surrounded by unmasked people coughing, wheezing and blowing their noses. I’m not taking it off.
I request a supervisor. They sigh and roll their eyes but storm off to get someone.

At this point I’m late for my appointment AND being exposed to even more people without masks. I’m truly gobsmacked that this is happening in a HOSPITAL of all places.

Someone more senior arrives and gives me the same flawed droplet dogma logic as the last person.

I finally said - firmly but politely - I’m not removing my mask. This is MY personal protective equipment and I don’t consent to you putting me at increased risk.

Finally they agreed to let me in if I put their mask OVER my own. They forced me to sanitize my hands before and after despite my never touching the surface of my mask - and deigned to let me in.

🧵 1/2

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans

A study came out recently that showed a single COVID infection increases your risk of serious cardiovascular events for 3 years post infection.

That’s terrifying - but there’s a bigger discussion being missed.

That finding means a Covid infection makes you a “vulnerable”.

First off - the study didn't show that after three years your risk returns to pre-COVID levels. It's three years because that's all the data we have.

For all we know your risk never goes back to where it was before.

The increased risk factor was after ONE infection. Now I don't know about everyone else - but I don't know many people who are stopping at one infection.

Most have had it at LEAST three times - and because we aren't mitigating it at all - are getting it annually (or more frequently than that).

In time I'm sure we will see studies that make it clear how much risk reinfections pose - but if we know ONE infection raises your risk for three years - it's safe to assume multiple infections aren't doing your heart any favours.

There's also the fact that the increased risk applies even for those who had "mild" acute infections - once again proving that there really is no such thing as "mild COVID."

You may be asymptomatic. You may recover quickly. It’s still damaging your body in a myriad of ways.

"Only the vulnerable" need to worry.

Wrong again. The study showed that increased cardiovascular risk impacted everyone who had Covid - not JUST the vulnerable.

There's also decent odds you're now IN the vulnerable category because you had Covid.

Don't understand what I mean? Think it's fear mongering?

What makes someone vulnerable? Preexisting conditions, old age, compromised immune systems.
When a study finds an increased risk of severe cardiac issues - that means you have a comorbid condition!

That "increased risk" is because you now have cardiovascular issues. High blood pressure, narrowed arteries, increased clotting etc.

Congratulations - you're now one of the “vulnerable" for at least the next three years!

We've also seen a number of studies showing that COVID impairs the immune system. We even know it prematurely AGES you.

So you "feel" fine. You think you had a “mild" case. But the reality is you're immune compromised AND have cardiovascular disease.

You may actually be more "vulnerable" than disabled people like me who you look down.

Why? Because I know l'm vulnerable so I do everything I can to avoid COVID infections.
I'm not repeatedly stressing my body with constant reinfections. 1/2 🧵

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans #silentkiller

People make insensitive comments about disability ALL the time. Implying we’re “lucky” that we don’t have to work, that they wish they could “lay around” etc.

They don’t understand the “crip tax”.

It’s expensive being chronically ill. And no one teaches you HOW to cope.

Even if you’re fortunate to have good insurance and/or live somewhere with universal healthcare (like Canada)… the costs add up quick.

Take Canada for example - seeing a doctor is covered - medications, dental and vision aren’t.

If you have complex chronic illness - prescription costs alone can quickly spiral out of control.

Even if you have private coverage - many things aren’t covered. Almost half of what I take wouldn’t be covered by insurance - even with specialist prescription.

Other costs people don’t consider:

💰 Special diet (mine is incredibly restrictive)

💰 Medical and first aid supplies, home healthcare supplies etc

💰 Delivery, homecare, cleaning services, transportation, mobility aids.

If you have MCAS and/or Long Covid or are covid cautious … you can add a whole bunch more expenses to the list:

💰Air purifiers
💰Specialized body & oral care products
💰MCAS safe cleaning products
💰Respirators
💰Rapid tests

The bottom line is being disabled is expensive. Losing your autonomy and independence costs money.

Juggling everything we need to stay alive and maintain a baseline while also trying to ensure we keep a roof over our heads is a full time job.

As if that wasn’t enough - we also have to chase down doctors, follow up on tests, deal with medical gaslighting, covid risk in hospitals, HCWs who won’t mask etc. We do this while suffering the pain of being abandoned by family, friends & society.

It’s not lucky. It’s hard.

There’s other costs people never even consider - like the cost of relying on delivery services that more often than not get it wrong.

In my case - my diet is so restrictive that if a shopper brings the wrong item - it’s going to go to waste.

When you only have about ten safe foods and your delivery screws up five of them - you’re either going to go hungry for a week OR you have to place another order.

But orders have minimum spends and you have to tip a shopper twice. That adds up FAST.

I can’t tell you how much I miss being able to just pop to the store and get my own groceries. Grab a single ingredient without having to meet a minimum spend.

Many non disabled people see grocery shopping as a chore - I see it as a luxury I no longer have.

These are the types of issues you have to deal with when you become disabled that NO ONE teaches you about. 1/2 🧵

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans #bullying #CleanAirClassrooms #criptax

At ER with a POTS flare - heart rate is 180 at triage.

Nurse: “Are you fighting with your boyfriend sweetie?”

Me (somewhat indignant) “I don’t have a boyfriend. I have POTS.”

Doctor: “Single? At your age? How come? You don’t want to be married?”

This is misogyny in medicine. I had a cardiac issue which is clearly documented in my chart/medical history.

I showed up alone - having been brought in by paramedics after fainting from low blood pressure and high heart rate.

There was absolutely no reason to make it about my marital status, boyfriend or lack thereof.

Can you imagine if a man showed up at the ER after passing out and his heart rate was 180? Do you think for a second they would ask if he was fighting with his girlfriend?

It’s a rhetorical question - since studies have shown that men are treated faster and more seriously in healthcare settings.

POTS is particularly challenging because it can make a patient appear anxious. It causes high heart rate, shortness of breath, sweating and dizziness. It’s all too easy for healthcare workers to see those symptoms and psychologize the patient.

That was my reality for YEARS. Going to the ER because I had passed out somewhere - and being treated as though I was simply hysterical. Given IV fluids to placate me but never referred to cardiology and properly worked up.

Even once I finally received a diagnosis (more than a decade later) I would continue to encounter hurdles like the one described above.

We must do better. Patients deserve to have their issues taken seriously and their health protected. If you don’t know what’s wrong - admit it. Refer them to someone else. Don’t slap an “anxiety” label on them and send them on their way.

The amount of times I was either gaslit, misdiagnosed or mistreated in healthcare settings is a huge part of why I decided to start advocating. I want to raise awareness about the conditions I have so that patients might better recognize the symptoms within themselves.

I also want to try and change the culture of medicine. The default should be to believe patients. To protect them. To wear a mask around them during an airborne pandemic. It should NOT be to pry into their personal life, psychologize and dismiss them.

Now that I know and understand what’s wrong - I live my life upside down! Almost all my writing is done horizontally and/or with my legs up the wall - because it’s the only way I get enough blood flow to my brain.

POTS can be incredibly debilitating - but there is hope. Treatments and lifestyle modifications CAN help.

I’ve just finished part one of a three part guide into all things POTS/Dysautonomia. It’s my hope these articles will help patients lean into their condition, adapt and accommodate it so that they will suffer less than I did.

https://www.disabledginger.com/p/living-life-upside-down-an-intro

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #mastcells #DysautonomiaAwarenessMonth

Part Two in my Three Part Series on MCAS is out now!

MCAS is a beast of a chronic illness. It is devastating to your quality of life to live under the constant threat of anaphylaxis. It's also poorly recognized and therefore hard to find a doctor to diagnose and properly treat.

The good news is there are many things you can do on your own - outside of the medical system - to decrease symptoms and reduce the number of reactions you have.

This guide focuses on diet - but also the myriad of other things that can be triggers (and how to mitigate them).

There's a steep learning curve when dealing with this illness - but the more we share what works and what doesn't - the easier it'll be for those who come after.

https://www.disabledginger.com/p/mcas-and-histamine-diet-isnt-the

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #mastcells

I lost two friends in the last 48 hours … and I’m reeling. We experience so much trauma and grief when dealing with chronic illness and disability. Watching our friends die is one of the worst. We often have more friends die (and at younger ages) than our non disabled counterparts - and it’s a difficult thing to be surrounded by so much loss. 

You never get used to it. I want to say it gets easier - but it really doesn’t. You may develop better coping skills or get better at hiding your grief - but the pain never becomes easier to bear. 

Tonight I’m mourning the loss of my friends - but I’m also grieving the loss of basic compassion and decency. 

I was always someone who believed that most people were generally good and kind … and the last 4.5 years has put that belief to the test. 

Witnessing the cruelty of others - watching how few people are willing to do even small things to help another person - it’s left a mark on me. 

Hearing people callously say things like “oh well Covid ONLY impacts the vulnerable” as a means of justifying all kinds of bad behaviour … it’s broken me. It’s as though they don’t realize (or care) that the “vulnerable” are people too. 

We dont want to be cast aside. We didn’t agree to spend our lives by the wayside just so other people could have their “normal” back. 

Perhaps the worst part is that more people are joining our ranks every day. More people are about to learn just how few people remain by your side when you become a “vulnerable”  

We don’t have adequate systems and social supports - and many won’t realize it until they try and access help. 

It’s traumatic when you lose your health, people abandon you AND you realize help is not coming. It’s a HARD adjustment. 

Most days I think I’ve come to terms with it - but then days like today make me question everything.

Please check on the disabled people in your life tonight. Check on those who are struggling with poverty or ill health or isolation. Check on the “vulnerable”. Don’t leave us by the wayside. Ask us if you can support us - it can mean so much. 

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #mastcells

"You should pray more - your disabilities will get better"

We've probably all heard this. That you can pray away an illness (or pray away the gay).

It's hurtful and far too common.

What I'm not used to is being told my illnesses are a "spanking from God."

Yes someone actually said this to me. They compared it to the way you might spank a child who runs out into traffic - you're training them that their behaviour is dangerous.

Apparently l've done something in my life bad enough to be compared to running into traffic.

I have no idea what it could be - but l've found that people who make these awful remarks generally don't care to get to
KNOW you. They want to preach, judge & blame.

They want to believe disability is a moral failing. A sin. So if you're disabled - you must have been
"bad".

For anyone who needs to hear it - your disability is not your fault (and neither is your sexuality for that matter). We did not choose this.

We've done nothing wrong and we don't need to be "corrected."

If someone suggests you can pray away your illnesses - that person is living in serious denial with a big heap of ableism on the side.

It's ironic that these comments almost always come from religious people who preach compassion and tolerance - while giving us anything but.

They tell themselves they've taken the moral high ground - when in reality they've sunk to the lowest low - blaming someone for something they have absolutely no control over. Making us feel broken and treating us like damaged goods.

It's also predatory to provide false hope that simply praying harder (or trying harder) will "fix you". It won't.

I don't care what religion you ascribe to - it's never ok to tell someone they can simply overcome being disabled. That's not how it works.

If you believe this - keep it to yourself. You're not helping anyone when you make these cruel views public.

Maybe ask yourself this... if you get hit by a car tomorrow and are left permanently disabled ... was God punishing you? What did you do wrong?

Or is it possible that when it happens to you (or your children) you will believe it was simply a random turn of events and expect compassion from others?

If you pray to get better and you don't - will you accept that? Or will you assume you too have been
"bad"?

My ask of people tonight is to consider that anyone can become disabled at any time. Health is not a guarantee and disability is not a punishment or a moral failing. It is a part of life.

We deserve equality, compassion and love the same as everyone else.

It's NOT loving to suggest it's someone's fault ...I don't care what mental gymnastics you've done to justify your remark. I don't care if you're trying to "save" them.

Love is listening, helping where you can & learning about what we're going through. Love is being an ally.

Love is not blame, condescension and moral superiority.

Next time you think about judging someone - try to instead ask them how you can support them. You might be surprised what you can learn by being open and compassionate.

To anyone who's heard similar remarks - stay strong and hold your head high.

Know that it's the person making the remark who's showing themselves to be wanting. Know your illnesses are not your fault.
Know you've got a whole community behind you.

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #mastcells #religion

Disabled people are often the canary in the coal mine. Things that will ultimately impact everyone - hit us hardest and first.

I’ve spoken about this before with respect to climate change - and how issues like power outages, floods and heat waves are exceedingly dangerous for people like me.

Medication issues are another one. Over the last few years I’ve noticed an alarming increase in medication errors both in AND out of the hospital.

This is a reminder to check and double check ALL your medications - and if you’re unsure you can put a photo of the pill into google and it will tell you what it is.

Shortages are a whole other issue. They’ve also increased in the last few years. Disabled people are often on MORE meds - and may or may not be on ones that are less common or have fewer alternatives.

If you also have MCAS? Shortages are a nightmare. Is there even an alternative? Is it safe? Will it cause a reaction? Are all the excipients the same? It’s exhausting. Many patients end up faced with having to ration medication in order to last until a med comes back in stock.

I don’t have easy answers. I wish I did. I mainly just want to raise awareness. Just because it’s not impacting you YET doesn’t mean it won’t.

It’s always a good idea to know if your medication has an alternative - and if you have MCAS make sure you know the ingredients in ALL of your meds so you can cross check new ones for reactivity.

Never be afraid to ask for help. Having a good relationship with a pharmacist could literally save your life.

And please - wear a mask. Clean the air. Stay home when you’re sick. Try and break chains of transmission. These issues have been steadily worsening since the beginning of the pandemic - and we will all end up in a heap of trouble if we don’t start calling it out and addressing it. It’s not too late to change course - but it needs to happen NOW.

For more on MCAS you can read part 1 of my three part series on this beast of an illness: https://www.disabledginger.com/p/when-youre-allergic-to-everything

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #mastcells

If you’re disabled or chronically ill and struggling to set boundaries with people … here’s a good litmus test.

I ask myself if this is a person who will show up for me if I get worse and need help? Have they helped me up until this point? Or will they likely disappear if I become more severe?

The answer may disappoint you - but I refuse to risk by baseline for anyone who won’t help or show up for me in the bad times.

I also remind myself that people who really love and care for me will respect and honour my boundaries - and won’t expect me to risk what little health I have left.

For more on boundaries, gaslighting, loss of friends and family and how to find your tribe:

https://www.disabledginger.com/p/gaslightingforthenewlydisabled

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #mastcells

Ok let me understand this… the neck and throat are “exposed areas” but your clothes, purse, pocket, the air ALL AROUND YOU is not?

This makes absolutely no sense. If your mask is off in public - you’re exposed. Regardless of where you put said mask.

To be clear - I hate when people wear their masks around their chin and neck and I wouldn’t want to put it back over my mouth after either. But this is simply bad messaging.

Imagine if instead they showed the proper way to Don and doff and explained that respirators like N95s have electrostatic charge to further prevent infection?

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #mastcells

“Your disabilities are your fault! Try harder! Eat better! Do yoga! Don’t mask! Care about health!”

We’ve heard it ALL. You can’t “healthy living” your way out of disabilities. Many are born disabled.

Folks who “don’t do sick” are rejecting reality & their ableism harms us.

More and more I think people say these things because they desperately NEED to believe that their healthy lifestyle will ensure they don’t end up “like us.”

Disabled people are so disliked and mistreated in society - that people fear becoming us and lash out as a result.

More on the “don’t do sick” crowd - including how we’re frequently expected to hide our disabilities so as not to inconvenience others.

Never forget that it’s ok to set (and hold) boundaries. Never apologize for being sick!

https://www.disabledginger.com/p/we-dont-do-sick-if-you-cant-hide

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #mastcells

I’m not good at asking for help. I never have been. Today I HAD to ask for help - and with a rather delicate task.

I had a serious flare of my POTS and MCAS at the same time. The result was horrendous GI issues … only I couldn’t get myself to the bathroom. I tried, fainted and made a mess.

I find it humiliating to ask for help going to the bathroom. I know I shouldn’t feel that way - but knowing and feeling are two very different things. I’m still working on acceptance - and accepting that I can’t always get to the bathroom (which is only 10 feet from my bed) on my own is HARD.

Thankfully a carer was here helping me with food deliveries - and they helped get me cleaned up and to the bathroom. They also suggested I get a bedside commode.

I’m really struggling with this … having to look at a bedside commode will be a constant reminder of how much health and independence I’ve lost. It will be hard on my mental health. Though it would likely prevent injuries and future accidents.

I share this - red faced and embarrassed - because these are the types of things disabled and chronically ill people struggle with. We’re taught not to talk about them. To “push through” and hide our pain.

I want to change that. I want to find a way to believe it’s OK that I need this additional level of assistance. I don’t want to be embarrassed or ashamed.

The other issue is my bedroom is incredibly small so there’s no room for it except to put it IN the doorway. It’s not practical and I worry could result in a fall or accident in the night. Im also not confident I can empty one myself and/or deal with the smell - though I’m sure there are ways around that.

Appreciate any and all tips!

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #mastcells

I published my first article on MCAS (mast cell activation syndrome) yesterday. It was a broad overview of the condition as well as the story of my first anaphylactic attack.

My second piece will be a deep dive into diet, food prep and storage, indoor air quality, personal care products, cleaning products and cooking styles/tips.

Is there anything else I’m missing? Outside of medications and supplements (which would easily be its own article)?

I would love to know what people wish they knew about MCAS - or what areas they could use additional support. I think stress reduction and acceptance are also important - because it is an exceedingly hard condition to live with.

Let me know below if there’s anything you want added or covered!

Beginner’s article here: https://www.disabledginger.com/p/when-youre-allergic-to-everything

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #mastcells

When you’re allergic to everything and nothing all at once…. You may have MCAS.

Suddenly allergic to alcohol? Certain foods making you sick? Unexplained swelling and rashes? You may have MCAS.

Did you know you can experience anaphylaxis without ever having throat or facial swelling? I certainly didn’t! My first episode of anaphylaxis started in my gut and my heart - and I genuinely thought I had the flu.

I suffered for two days with unrelenting nausea and diarrhea, tachycardia, chest pain, shortness of breath and sweating. I lay in my bed desperately trying to force fluids down - but my throat was sore and swallowing had become difficult.

I finally relented and went to the ER - largely due to dehydration. Imagine my shock when the triage nurse took one look at my throat, stabbed me with Epi and whisked me into a code room.

I genuinely had no idea I was experiencing anaphylaxis. The throat issues felt just like strep and/or a bad flu. It happened so slowly that I didn’t even realize.

I wrote this article as a primer into the wild world of mast cell disease. These cells are everywhere in your body - contain over 200 mediators and can wreak havoc in a million different ways.

I hope it will help people better understand the condition - and I plan to write two more pieces which will explore in greater detail how to get diagnosed, how to treat it and (perhaps most importantly) how to learn to live with the constant threat of anaphylaxis.

https://www.disabledginger.com/p/when-youre-allergic-to-everything

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #mastcells

https://www.flomaskeu.com/collections/flo-mask-pro-ffp2

This is ALMOST perfect, if there was even a 6 cm by 2 cm clear area in the middle to allow any lip reading!

More info on my pillowfort post: https://www.pillowfort.social/posts/5136921

#access #accessibility #EaseOfAccess #accessible #disability #DisabilityPrideMonth #hearing #deaf #hardOfHearing #sensory #sensoryImpairment #sound #listen #audio #mask #respirators #respirator #MaskMeansRespirator #MaskOn #MaskMandate

Seclusion rooms are still a thing in Canadian schools? I can’t even imagine the damage done to a disabled child placed in one of these rooms. The isolation, the fear, the lack of support … being made to feel like you’ve done something “wrong”. We need to do away with these ableist & harmful policies.

https://t.co/B088s3HJsJ

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Schools #Seclusion

Relative efficacy of masks and respirators as source control for viral aerosol shedding from people infected with SARS-CoV-2: a controlled human exhaled breath aerosol experimental study - eBioMedicine https://www.thelancet.com/journals/ebiom/article/PIIS2352-3964(24)00192-0/fulltext “All #masks and #respirators significantly reduced exhaled #ViralLoad, without fit tests or training. A duckbill N95 reduced exhaled viral load by 98% (95% CI: 97%–99%), and significantly outperformed a KN95 (p < 0.001) as well as cloth and surgical masks. (1/2)

Maryland Today | #N95Masks Nearly Perfect at Blocking #COVID, UMD… https://today.umd.edu/n95-masks-nearly-perfect-at-blocking-covid-umd-study-shows “The research shows that any mask is much better than no mask, and an N95 is significantly better than the other options. That’s the No. 1 message,..

The results also suggest that N95 masks, also known as #respirators, should be the standard of care in nursing homes and health care settings when respiratory viral infections are prevalent and transmission risk is elevated”

Hey #CovidIsNotOver people! I start a new job tomorrow (fully in person) & am a little nervous about keeping myself safe. Here’s what I’ve got in my toolkit:

1. #3MAura and #VFlex #N95 #Respirators
2. #Hepa purifier for my desk
3. #Co2 monitor
4. #Enovid #NONS nasal spray
5. #CPC mouthwash
6. #SipMask

I’ll only eat outdoors, weather permitting; otherwise I’ll find a private room & run the purifier before unmasking. I will use #NasalSpray several times per day.

Anything I’m forgetting? 😷

Can someone share the best mask recommendations for COVID currently? There are some pictures with in-depth test results and comparisons - can people reshare those pictures? (Trying to find them, struggling)

#covid #sarscov2 #masks #respirators #corona #coronavirus #fittest #mask #masking #airborne #virus #pandemic

Can someone share the best mask recommendations for COVID currently? There are some pictures with in-depth test results and comparisons - can people reshare those pictures? (Trying to find them, struggling)

#covid #sarscov2 #masks #respirators #corona #coronavirus #fittest #mask #masking #airborne #virus #pandemic

Can someone share the best mask recommendations for COVID currently? There are some pictures with in-depth test results and comparisons - can people reshare those pictures? (Trying to find them, struggling)

#covid #sarscov2 #masks #respirators #corona #coronavirus #fittest #mask #masking #airborne #virus #pandemic

Can someone share the best mask recommendations for COVID currently? There are some pictures with in-depth test results and comparisons - can people reshare those pictures? (Trying to find them, struggling)

#covid #sarscov2 #masks #respirators #corona #coronavirus #fittest #mask #masking #airborne #virus #pandemic

Can someone share the best mask recommendations for COVID currently? There are some pictures with in-depth test results and comparisons - can people reshare those pictures? (Trying to find them, struggling)

#covid #sarscov2 #masks #respirators #corona #coronavirus #fittest #mask #masking #airborne #virus #pandemic

@rchusid Now we just need @WHO to mention #N95, #N99, #P100, #FFP2, #FFP3, #P3, #KF94, and/or #KN95 #elastomeric #respirators -- the ones which *work* -- rather than just vaguely saying "masks".

Cloth & surgical junk masks are 30% effective -- better than nothing.

#N95 and reusable #P100 #elastomeric #respirators are >95% effective -- MUCH better. And they're cheap enough.

Since I'm not seeing it posted on here, I found on Twitter a bunch of people talking about catastrophic failures for their #3MAura #masks, specifically for the 9205 variant's straps (the 9210 looks okay), and wanted to help get the word out since the Aura is so popular: https://twitter.com/RogueVictorian/status/1613240063772483614

(In case that's not working for you, @knowattitude gave me this link: https://unofficialbird.com/i/status/1613240063772483614)

Tags for visibility: #covid #WearAMask #LongCovid #mask #Respirators #MaskUp #N95

@xangoh Well-said! There’s already so much inequality at play in terms of what people *can* do to keep themselves safe.

Some, even, can’t afford adequate PPE like #3MAura #Respirators because they don’t know where to get it (online, for example, as opposed to at Home Depot where they’re price-gouged to high heaven) at a price they can realistically afford.

But yeah, let’s waste our precious time on earth splitting hairs about how dumb an idea it is to go food shopping /s