Broadwaybabyto

Disabled & chronically ill writer. Former theatre critic. Passionate about disability rights, clean air, masks and covid caution. Clean air is a human right & masks work.

I write about the experience of being highly vulnerable during a pandemic, isolation, loss of healthcare & supports and how we can fight back.

#CovidisAirborne #DisabilityAwareness #Covid #Pandemic #MasksWork #CleanAir

Twitter: Twitter.com/broadwaybabyto
Website/Writing: https://disabledginger.substack.com/
Profile photo: Me sitting in front of a staircase. I’m wearing a purple shirt with bright red hair
Twitter verified per: https://fedified.com

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broadwaybabyto_at_zeroes.ca@momostr.pink

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Last Notes

2024-06-14 10:17:13

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it’s sad how true this is. The article said she declined to press charges but I would imagine law enforcement could have chosen to charge with or without her? Given it’s a clear violation of the law?

2024-06-14 10:16:28

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I’m going to have to research that. I’m from Canada so we don’t have laws like that … but is it basically that anytime there’s a threat to your life/safety you can respond with force?

2024-06-14 10:15:31

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me too. I’m concerned and scared and angry. I’m sick of feeling like vulnerable people are bearing the brunt of people’s anger they had to mask for a brief period of time.
The idea that mask mandates designed to preserve life are even remotely similar to mask bans is appalling.
I see no way this won’t escalate to violence - it’s dangerous to embolden such angry people.

2024-06-14 10:13:22

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what city are you in? I’m encouraged hearing half the people were masked!

2024-06-14 04:41:22

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I’m housebound now due to the severity of my disabilities so it limits the things I can do - but perhaps what I should have said was “masks shouldn’t be political”. Because they shouldn’t be. They weren’t prior to COVID and the fact that they’ve been politicized is causing tremendous harm. How to change that is a harder question and one that I’m still trying to figure out.

2024-06-14 04:39:27

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I still see masks downtown Toronto in & around the St Lawrence and financial district … no way to know if it’s primarily tourists but at least I don’t feel like the only one!

2024-06-14 04:38:38

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that is a beautiful trip! Are you driving or taking the train? I think in most places you will be fine - I live in Toronto & many people are still masking especially on transit & in crowded areas. I think in general Canadians are more polite about their disagreements - though the trucker freedom convoy definitely challenged that assumption. I have been bothered for masking but in a relatively rough neighbourhood & I was alone at the time… when I’m with another masker it’s never been an issue.

2024-06-13 22:29:36

North Carolina’s mask ban just passed this week - and New York is already considering following suit.
If we are going to refuse to mitigate Covid in ANY way - if people wish to remain in denial about its prevalence and severity - then we NEED the legal right to mask. It’s our only protection in public.
Making wearing a medical device illegal is effectively bringing back ugly laws - we’re moving into full blown eugenics and people are celebrating it. They’re happy they won’t see masks anymore.
Enough is enough. We really need to get loud on this. Contact local government and advise them you won’t stand for medical masks being made illegal. If you’re able to mask and aren’t - now is the time to mask up in solidarity! If we can normalize them - they’re less likely to be banned.
Transcript of NY Governor Hochul via @npub1x3x…qwm0
#CovidIsAirborne #CovidCautious #CovidIsNotOver #MaskBan #BoycottNC #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #NorthCarolina #NewYork #UglyLaws
https://media.zeroes.ca/media_attachments/files/112/611/668/677/620/950/original/63d8bc6491b98a64.png

2024-06-13 09:38:23

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I wish more people would start masking just to show it’s a normal thing people do to avoid catching (or spreading) disease. Sadly it seems very few people are willing to do that even to fight back against such a discriminatory bill.

2024-06-13 09:37:14

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the only thing I’ve ever heard them say for a benefit is to “deter crime”. Which is nonsensical when it comes to medical masks. If someone is going to commit a serious crime - whether or not they can legally wear an N95 while doing it won’t change anything. Banning masks in public settings hurts the most vulnerable. It’s all deeply disappointing.

2024-06-13 09:35:22

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they claim it’s related to protests - but in reality it seems they’re just pandering to their base. Their voters loathe masks and any reminder of the pandemic (and vulnerable people!) so they’re making it impossible to mask in public and excluding vulnerable people from public settings.

2024-06-13 06:54:00

The North Carolina mask ban hasn’t been entered into law yet & already there’s a story of a woman being intentionally coughed on & harassed.
The man demanded she remove her mask, called her a Liberal and himself a Conservative and tried to tell her masks were illegal in public places. She explained she had stage 4 cancer and was immune compromise and he responded by purposefully coughing on her.
This is disgusting behaviour but make now mistake - lawmakers are effectively encouraging this type of harassment. Banning medical masks emboldens those who seek to harm high risk and disabled individuals. We are already seeing it.
It’s also fascinating that her attacker felt the need to call out his political affiliation (as well as make an assumption on hers).
I need people to understand masks aren’t political. Covid isn’t political. A virus is incapable of caring what side of the aisle you’re on - and a mask is a medical device to protect the health of the wearer (and others). This politicization of masks is mainly being driven by people who are angry about mandates at the height of the Covid pandemic - they consider the months they had to mask as the most egregious violation of their freedoms imaginable - and now they’re lashing out at those who remind them of that time in their lives. They don’t want to see masks (or disabled people) ever again.
Please keep pushing back. Speak out. Get loud. Let lawmakers know you won’t stand for bills that violate a person’s right to protect themselves and their health. The harassment will only get worse from here and we need to call out bad behaviour whenever it happens - and support each other through these difficult times.
https://www.wral.com/story/scared-to-put-on-my-mask-cancer-patient-says-she-was-intentionally-coughed-on-in-spat-over-mask/21478890/
#CovidIsAirborne #CovidCautious #CovidIsNotOver #MaskBan #BoycottNC #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #NorthCarolina

2024-06-13 04:28:53

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it so perfectly encapsulates where we are in the pandemic response. Only a patient masking - NOT the doctor. Respirator is upside down like our entire approach to infection control!

2024-06-13 03:31:21

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haha amazing!!! They are so cute - I think it would be hilarious if a group of us wore these to protest the mask ban!

2024-06-13 03:30:42

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it’s a misdemeanor to be masking in public. I would assume it’s the same charge if you don’t remove it (but could be wrong). Our concerns are more about what this will mean for how people who mask are treated - as it encourages harassment. Additionally if you’re marginalized or POC you will be far more likely to be stopped by law enforcement & potentially detained/arrested. Even if you’re not charged that’s a highly traumatic experience & one that could lead to infection.

2024-06-13 03:28:54

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or maybe a bit of all three? I mean the bill is clearly not actually to deter crime or protect people - it’s going to cost lives and will definitely lead to more harassment that could escalate to violence. I will pay close attention to what happens on Friday now!

2024-06-13 03:27:57

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that’s the case in NC! Klan members can still get an exemption to wear their hoods for protests and parades - but an N95 is going to get you arrested. It’s truly horrific at this point.

2024-06-12 21:06:17

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I’ve read the final bill - from my interpretation medical masks are ok to prevent spreading communicable disease - which means we don’t yet know if you have to already be sick to wear them. It excludes people needing them for smoke, pollen etc. It also allows literally ANY person to demand you take off your mask. So the medical exemption is effectively worthless if any person has the power to make you remove it.
I hope I’m wrong but the language was purposefully vague for a reason - and we likely won’t know its full impact until someone is arrested.

2024-06-12 09:24:06

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that’s definitely the way it feels right now. I know the mask ban has been done under the guise of “deterring crime” but that argument doesn’t hold up when you read the bill and consider the types of masks they’re banning.

2024-06-12 09:23:08

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ha! I want to get one of those inflatable dinosaur costumes and just walk around in it with my N95 on underneath!

2024-06-12 06:49:13

In the last 4.5 years we’ve learned so much about Covid - how it’s spread, what the virus can do to our bodies and how to prevent transmission. We HAD the tools to significantly change the course of the pandemic (and spare many lives).
Yet instead of using these tools - one by one governments have taken them away. Made accessing tests, treatments and vaccines harder. Failed to address & educate about airborne transmission. Lifted mask mandates and isolation requirements.
Then today the state of North Carolina passed a bill making medical masks illegal in public settings AND granting occupants of public places the power to demand you remove your mask (if you’re wearing one under the extremely narrow medical exemption).
It’s been a very tough day for disabled individuals. We’ve been knocked down time & time again… punished for pandemic policies that we had no say in developing or enforcing. The pendulum is swinging so far in the other direction that even healthcare workers seem uninterested in protecting their high risk patients.
I wrote about the mask ban, why people all over the world should fight against it, why it’s ableist & discriminatory and HOW we can fight back. Because we CAN fight back. We have strength in numbers are our lives (and the lives of others) are worth fighting for. Read more here: https://disabledginger.substack.com/p/north-carolina-passes-hb-237-and
CovidIsAirborne #CovidIsNotOver #CovidCautious #ChronicIllness #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #NorthCarolina #directaction #MaskBans
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2024-06-12 03:35:02

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I think the issue is that it will be a crime. You can be arrested for masking in public. Plus it allows members of the public (not only owners and law enforcement) to request you de-mask. It’s one thing to remove your mask quickly for an ID photo - it’s another to be harassed into removing it by someone in a store or public setting just because they can.
I’m in Toronto and there’s a local Covid cautious group and someone in it does outdoor passport photos. Not sure if you would have anything like that in Alberta but maybe worth looking?

2024-06-12 01:49:02

A few weeks ago I wrote an article about North Carolina’s proposal to ban medical masks and remove the existing medical exemption.
I was concerned the removal of the medical exemption was strategic - allowing them to put it back later and pretend they were doing the disability community a favour.
When the House rejected the bill and sent it back to the Senate for revisions - many disability advocates (myself included) expressed concern that it would end up revised to be MORE problematic.
That’s exactly what happened. The new bill that’s been passed TODAY is an egregious violation of an individuals right to protect themselves from a deadly & disabling virus (not to mention their right to protect others).
I wrote about what it means, how it will harm high risk & vulnerable individuals and what we can do to fight back. And we MUST fight back. You don’t have to be from North Carolina - or even American - to help. You can call, email and post that you won’t spend a dollar in that State until this law is reversed.
https://disabledginger.substack.com/p/north-carolina-passes-hb-237-and
#CovidIsAirborne #CovidIsNotOver #CovidCautious #ChronicIllness #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #NorthCarolina #directaction #MaskBans
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2024-06-09 04:58:01

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I really want to move to a half face P100 but have already been verbally attacked in a white N95 so worry about wearing anything more “aggressive”. But the less people masking the better protection we need at the individual level. I’m glad you’ve found earloops that work for you! I haven’t found one that fits me well but I have a small face - and I actually find headstraps more comfy because my ears get sore super fast.

2024-06-09 04:53:58

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I don’t unfortunately - I think it varies by country. Most of what I’ve heard where I am (Canada) is that any booster past XBB will likely not be available until fall so many people are opting to get whatever one they can right now just to have some protection. I know in some countries they’re severely restricting access to them too.

2024-06-09 04:44:16

It will never cease to amaze me how much death & disability people have been willing to accept, downplay and normalize just so they don’t have to adjust their way of life.
As Julia points out - Covid lulls are being bought by mass infection NOT by sound public health policy & effective mitigations. Mass infection means many dead & even more disabled and isn’t something that should be celebrated.
We could do so much more to control the spread of this disease. We’ve learned so much in the last 4 years and we know what works - but we need to push governments & public health to actually do it. We need to be honest with ourselves about what these lulls really mean & demand better from those in power.
We also need to push back against the constant removal of tools we had to address the COVID pandemic. We are literally going backwards. Tests & treatments are nearly impossible to access, booster uptake at an all time low, little to no reporting of hospitalizations, cases & deaths and now in North Carolina a bill to make masking illegal.
Covid is airborne. We all share the air. We need to care about the air we share and we will all be much healthier.
https://open.substack.com/pub/thegauntlet/p/covid-lulls-arent-being-earned-by?r=19dk2e&utm_medium=ios
#CovidIsAirborne #CovidIsNotOver #CovidCautious #ChronicIllness #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #NorthCarolina #directaction #MaskBans

2024-06-09 04:43:22

2024-06-08 23:23:58

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that’s exactly my concern. Even if you win in court you’ve already been through considerable trauma and possibly infected. People will likely just comply and remove their masks. It’s a very dangerous precedent that I sincerely hope doesn’t pass.

2024-06-08 04:56:37

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ha! I love this. Sign me up! I used to be a theatre critic - I will give you your first 5 star review.
What I find particularly galling about this bill is in theory it’ll make wearing a mask to a hospital illegal - and allow any owner (so doctor? Nurse?) to demand you remove it or leave. At a hospital!

2024-06-08 03:03:59

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yep. Absolutely. And just playing to their base - who dislike masking & all reminders of covid.

2024-06-08 03:02:31

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I hope you’re right … but I know some advocates working in NC are very concerned that it was intentional. And the fewer people masking and the more harassment about it the more people need to up their game. I’m relatively confident in an earloop N95 if everyone is masked - if no one is masked I would rather a half face respirator.

2024-06-07 04:38:43

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I would agree that’s likely what they mean - but I know some people in North Carolina aren’t comfortable and want it to be made clearer. N95s will likely be fine but I wouldn’t be surprised if half and full face respirators aren’t. Hope you can find a good mask to switch to!

2024-06-07 03:32:42

A few week’s ago I wrote an article about North Carolina’s proposal to ban medical masks in public places. My concern was that they were removing the medical exemption so that they could put it back at a later date and act as though they were doing the disability community a favour.
That later date has come. The Senate passed the revised bill today which allows medical masks for the purposes of avoiding spreading a communicable disease. It states medical & surgical masks … we don’t know if respirators like N95s and P100s will be permitted.
We also don’t know whether you will be able to wear a mask to avoid catching a disease. This language is purposefully and problematically vague and sounds as though you have to already BE COVID positive in order to mask.
Medical exemptions are extremely problematic in that they put undue burden on disabled individuals. We must get a medical note that not everyone can afford or access - and then if questioned by law enforcement may have to unmask while they assess the validity of our exemption. Covid can infect in seconds - if you’re immune compromised you can’t take that risk.
Medical exemptions also ignore the fact that disabled people don’t live in a vacuum. We have family, friends and caregivers who need to mask to avoid bringing COVID home to us.
And what about people who need to mask to avoid pollen, chemical scents or wildfire smoke? They won’t be able to either under this new bill.
Masks are politically unpopular right now - even though they should never have BEEN politicized. They’re a medical tool that’s needed in an airborne pandemic - especially now that most other tools have been dismantled. Making them illegal is discriminatory and reeks of ableism & eugenics.
Perhaps the most problematic part of the bill is the language that states that any member of the public can request you remove your mask. Best case this means private owners may ask you to remove mask for identification purposes - worst case anyone in public could legally start harassing and haranguing someone until they take off their mask. Imagine if we passed a law that allowed someone to demand another person abandon their wheelchair? We can’t let this happen.
I urge everyone to call their local officials and tell them they won’t stand for the banning of medical masks with or without an exemption. If you don’t live in North Carolina you can still call and say you will never visit or spend a single dollar in the State if this bill passes. We should ALL be pushing back because if this passes it will end up in other States - and it will embolden those who seek to harm people who are still masking and/or disabled. We need to say “enough is enough” and demand that we keep a critical tool to keep ourselves safe from COVID and other diseases. Together we can turn the tides on this but we have to get loud, work fast and make sure the powers that be know we see this for the ableist discriminatory garbage it is.
My original piece on the mask bans and eugenics is here for anyone who wants to read it: https://disabledginger.substack.com/p/we-are-witnessing-real-time-eugenics
I’m also attaching a screenshot of the bill as it currently stands so people can read the revised language for themselves. It’s NC HB 237
#CovidIsAirborne #CovidIsNotOver #CovidCautious #ChronicIllness #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #NorthCarolina #directaction #MaskBans
https://media.zeroes.ca/media_attachments/files/112/573/213/791/249/595/original/2778fbca4f056596.png

2024-06-06 03:43:04

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that’s exactly it. I know that if they think slight modifications to reduce Covid risk are “too hard” they won’t adapt well to the loss of function that comes with many chronic illness. They just don’t consider that they’re risking anything. Or they’re certain there will be health available.
It enrages me but it also breaks my heart because I would give anything to have even a small amount of functionality back & people are risking theirs for the most inane reasons.

2024-06-06 03:40:50

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yes that’s definitely part of it. What’s interesting is I still see a lot of othering happening with covid but it’s mainly the vulnerable & elderly instead of homosexuals and drug users (the way it was with AIDS). I think whenever there’s strong government and public health messaging that “only” a certain group needs to worry… we will have a terribly difficult time controlling transmission.

2024-06-06 03:01:19

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Exercising with POTS can be a challenge - but there’s loads of activities you can do while horizontal. Ankle pumps, calf raises and butt squeezes have helped keep my legs strong without exhausting my heart. Swimming can be great for those who tolerate it.
Heavy meals high in carbohydrates can trigger tachycardia - so where possible I eat smaller meals with higher amounts of protein & fat. With MCAS mixed in this gets extra challenging but it’s worth the effort to avoid the post carb crash.
If you are experiencing severe tachycardia and dizziness - the best position to be in is legs up the wall. I will lay this way and put an ice pack on the back of my neck which helps to lower the heart rate quickly. Deep breathing & vagus nerve exercises help as well.
Standing still is always harder than walking. When we walk the motion keeps blood flowing. When standing still it pools faster & you get symptomatic quicker. Some of my worst fainting spells were after long waits in line or being on public transit unable to get a seat.
I found that learning creative ways to shuffle my weight in cramped spaces really helped reduce those episodes. If stuck in a crowded line I would stand on one leg or in yoga poses that engaged my leg muscles & kept the blood pumping.
It’s an awkward thing to do and people did sometimes stare - but what I learned over the years is they stare far more if you faint and an ambulance has to be called. So I put strangers staring out of my mind & stood whatever way resulted in the least amount of symptoms.
Remember that it’s always ok to sit down. It’s ok to take a break. You’re not being rude or weak - you’re respecting the limits of your body. Most people never have to think about their autonomic nervous system because it functions properly without effort.
As a result most people can’t understand the incredible difficulty of managing a malfunctioning autonomic nervous system. But the good news is it CAN be managed. These lifestyle tips make a big difference - and there’s a number of medications that can help as well.
Join patient support groups, find online communities that can help & adapt these tips to suit your personal circumstances. Your body will thank you. And never be afraid to lay down - wherever you are! Embrace the horizontal!

2024-06-06 03:01:19

POTS has significantly impacted my quality of life. It makes seemingly simple activities nearly impossible & causes crushing fatigue.
I’ve had a number of bad falls & faints that have left me injured - and as a result have learned many tips & tricks to keep myself safe.
Dysautonomia is an umbrella term for conditions that cause malfunctioning of the autonomic nervous system - which is the system that controls all unconscious processes. Things like breathing, blood pressure, heart rate & temperature regulation.
POTS stands for Postural Orthostatic Tachycardia Syndrome and is the most common presentation. When a healthy person stands up - their blood vessels constrict & send blood upwards to the brain. In POTS this function is impaired.
When someone with POTS stands up - the blood pools in the lower half of their body. Their heart rate increases in an attempt to force blood up to the brain. This can leave them sweaty, breathless, dizzy & nauseous - and sometimes they faint.
The tachycardia that comes with POTS can significantly decrease overall quality of life. I tell people to think of their most difficult cardiac workout & how hard they have to push their body to get their heart rate into a fat burning zone.
Now imagine that happening when brushing your teeth or drying your hair. Imagine feeling like you’re running a marathon every time you try & stand up. It’s incredibly disconcerting and exhausting because we are basically getting a cardiac workout whenever we’re upright.
When POTS episodes become more severe - a patient will start to faint. I used to get early warning signs like blurred vision, nausea and headache… signs that my body needed me to sit immediately or it was going to force me to the ground.
These days I faint with very little warning - a combination of worsening tachycardia coupled with dangerously low blood pressure. But during the “warning years” I learned a lot of tips & tricks to stay safe & conscious.
First - if you feel faint you NEED to sit down. Laying down is preferable. It took me a long time to stop being embarassed about this & just sit down in public no matter where I was. I learned the hard way that if you don’t do it voluntarily - your body will force you.
Increasing fluid & salt intake helps a ton. I’m never without a bottle of water & salt tablets. If extra symptomatic I find drinking 500ml of ice cold water as quickly as possible can stave off a faint. Otherwise sipping water & electrolytes slowly throughout day works best.
Compression socks & abdominal binders make a big difference. When I got my first pair of compression socks I was covered in sweat & breathless from fighting to get them on. Solution? Put them on first thing in morning before you get out of bed! Your legs will be less swollen.
Speaking of bed - if you elevate the head of your bed it’ll help your body be less shocked by gravity when you get up in the morning. I sleep with head elevated & spend the rest of the day with my legs elevated as much as possible.
Keeping your legs & core strong is also important. While dysautonomia is not caused by deconditionning - losing muscle & strength can make it worse. If your legs are strong you can contract the muscles & have them do what your blood vessels are failing to do. 1/2
#CovidIsAirborne #CovidIsNotOver #CovidCautious #ChronicIllness #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #ChronicIllness #POTS #MCAS #Dysautonomia
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2024-06-06 02:50:18

If you’re still advocating for covid mitigations and the trolling & minimizing is getting to you… remember this:
If it was truly no big deal - there wouldn’t BE this much anger & trolling. People wouldn’t try & silence us. They would just ignore us.
People are angry at the sight of masks or references to Covid & Long Covid because deep down they know they should be more concerned than they are. They know something is wrong. They don’t want us to remind them.
Never forget that even if you only reach ONE person - that’s still a life potentially saved and a chain of transmission broken. It’s worth the effort.
#CovidIsAirborne #CovidIsNotOver #CovidCautious #ChronicIllness #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #ChronicIllness #POTS #MCAS #Dysautonomia

2024-06-05 09:18:56

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in some cases not even when they’re going to die sooner rather than later! In Canada it seems it’s being proactively suggested to disabled people who aren’t terminal & could have significant quality of life gains with better treatment. But they’re offered death instead. Truly awful.

2024-06-05 09:18:02

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exactly. I find most people either think we’re exaggerating how sick/limited we are OR they’re certain if it’s that bad for them the doctors will just fix them. They’re never considering they could end up permanently sick & unable to live the way they used to.

2024-06-05 09:17:06

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yeah I really have to experiment more. I seem to have a mast cell reaction to most headstrap N95s so would be great to find a more comfy alternative.

2024-06-05 04:55:39

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I’m not American but I’m also in the murdered third and raging with you. I’m desperately trying to wake more people up AND get them to care before it’s too late for us and those like us.

2024-06-05 04:53:56

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so nice to see you over here Lucky!!!

2024-06-05 04:53:18

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whoa whoa what? I would love more information on this! My throat is ALWAYS sore and dry and most masks seem to make that worse.

2024-06-05 03:37:06

I frequently hear people say that having to take Covid mitigations is “too hard” or interferes with their ability to “live their lives.” The reality is you can do almost ALL activities in a way that is covid safe-er. People just have to want to put in the effort.
I became disabled before the COVID pandemic and my illnesses have cost me the ability to do MANY things I used to take for granted. Suffice it to say if wearing a respirator or cleaning the air could have changed things for me - I would have happily done it.
Here’s a small list of what I’ve lost:
- being a theatre critic & attending galas and red carpets
- travel
- seeing family & friends
- eating most food
- drinking anything but water
- sleeping through night
- ability to be upright/walk unassisted
- ability to wash hair unassisted
- ability to sit outside & enjoy fresh air
- ability to cook, clean & care for myself
- dating & intimacy
- yoga
- feeling safe in my body (the constant threat of anaphylaxis & cardiac arrhythmias will do a number on your overall safety& comfort)
On top of those things - society’s unwillingness to take Covid seriously has robbed me of safe healthcare & homecare, dignity & autonomy. In its place is medical assistance in dying. Disabled people who are “high cost health users” are finding they’re offered euthanasia more frequently than actual care to improve quality of life. My life as I knew it is over.
I don’t say this for pity - I’ve spent years working on acceptance & carving out a life that allows for joy amidst the suffering.
I simply want people to understand how much their lives can change - and how precious their health is. Once it’s gone you can’t always get it back.
#CovidIsAirborne #CovidIsNotOver #CovidCautious #ChronicIllness #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #ChronicIllness #POTS #MCAS #Dysautonomia

2024-06-05 02:35:54

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I’m going to check this book out!

2024-06-05 02:34:23

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yeah she was a huge figure in the movement. Regularly interviewed, had her own website/blog advising other HIV+ mothers… her high profile might be why they came so close to prosecuting her for Eliza’s death. I suspect she was responsible for quite a few children’s deaths unfortunately.

2024-06-05 02:09:56

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yes thanks so much!

2024-06-05 01:39:27

Great study on efficacy of N95 respirators in healthcare settings.
These types of masks DO work and they DO save lives.
We don’t need to accept the fatalistic viewpoint that Covid is inevitable & that prevention is futile. We have the tools & everyone deserves safe healthcare. Infection control should not be yet another thing that “falls by the wayside”
https://t.co/R5KhWL10z2
#CovidIsAirborne #CovidIsNotOver #CovidCautious #ChronicIllness #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp

2024-06-04 23:34:46

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you really can’t make it up. Do you know if AIDS denialism ever gained much ground outside of the U.S.? It’s scary how Americans seem far more likely to go for this rhetoric than other countries (but that’s just my own personal observation - I could be wrong)

2024-06-04 22:22:29

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this is incredibly kind - thank you. I’m quite ill so it’s taken alot to get it off the ground - I was primarily writing in that “other place” and a number of people pointed out that I shouldn’t be just giving me content to you know who for free. Better to have my own platform somewhere but the learning curve has slowed me down.

2024-06-04 22:21:14

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what a great find! Can I share that other places? I clicked on the banner so I could read their full page on AIDS and yikes. Anyone know if they still believe that?
I feel like when everyone who led your movement dies it’s a pretty good sign the movement is misguided. But I’m relying on logic which seems woefully absent these days.

2024-06-04 09:40:47

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and as I recall she also refused to take the medications during pregnancy - which drastically increases the odds of passing HIV to the child. She encouraged other women to do the same.

2024-06-04 09:39:56

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that’s interesting - thank you for sharing! It absolutely makes sense that it should be illegal but so many things don’t make sense any more.

2024-06-04 09:38:56

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very good point.

2024-06-04 04:56:00

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jails should be a priority for clean air. So much disease spread and people who get no say in personal protection. I know they won’t be - but in a just & decent society they would be.

2024-06-04 04:55:07

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and people cheering when she announced it! What have we become?!?

2024-06-04 04:35:07

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some people are just completely incapable of caring about anyone other than themselves. Heck some people are incapable of caring about themselves too!
I know you can be charged with a crime for knowingly infecting someone with HIV but I’m very skeptical we will ever get there with COVID given it’s airborne. Too hard to prove where you got it. But when people purposefully cough on you in public or go into crowded places when they KNOW they’re positive? That really shouldn’t be allowed.

2024-06-04 04:33:31

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I’m just so disappointed to learn this. And I’m enraged that the movement is gaining steam thanks to Covid denialism. So dangerous.

2024-06-04 04:12:07

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that’s incredibly disappointing. One of the saddest parts of the covid pandemic for me has been watching more people find & embrace AIDS denialism. That movement had all but been completely quashed prior to the pandemic.

2024-06-04 03:44:37

Denying the severity of Covid & how it’s transmitted has devastating consequences - especially for children.
I’m reminded of a prominent AIDS denialist who let her 3 year old daughter die and narrowly escaped felony charges.
A thread on denialism & how it can literally kill.
Christine Maggiore was a high profile AIDS denialist who was HIV positive but believed the virus didn’t cause AIDS. She blamed the HIV medications - and as a result refused to take them while pregnant and breastfeeding her children.
Her daughter Eliza became sick at 3 years old and died of an AIDS related pneumonia- without ever being tested for HIV. Doctors who weighed in on the case expressed concerns of negligence on behalf of both her parents & the pediatrians involved.
They explained that had Eliza been HIV+ her pneumonia would have been treated with a more aggressive antibiotic which could have changed the outcome. The police investigated Maggiore - but in the end the L.A. District Attorney declined to prosecute.
Christine did not change her stance and continued to promote her AIDS denialism - at one point bragging that at least 50 women had “come around to her point of view.” She literally lost her child and still couldn’t see past her dangerous anti science rhetoric.
How many children were needlessly infected with HIV and subsequently died of AIDS? We can never know for sure. People like Christine & other AIDS denialists preyed on people’s fear & their need to not be responsible for infecting their children. Easier to blame the drugs.
We’re in year five of a devastating global pandemic that is harming far more children than most people are willing to admit. We MUST look back and learn from history.
Denialism, minimizing and anti-science viewpoints are deadly.
Christine’s behaviour is frighteningly similar to the “exercise your immune system” crowd. They fight against clean air, refuse vaccinations & rally against masks. They blame “big pharma” instead of considering Covid may be more dangerous than they realize.
Christine encouraged other mothers to avoid HIV meds and “trust their immune systems” & it had devastating consequences. Now we see parents encouraging repeat Covid infections as they chase elusive herd immunity. Refusing MMR vaccines. Organizing measles & chicken pox parties.
Children will become disabled and die - and just like Eliza - they deserve to be protected. We need clean air in schools (and school busses) and better public health guidance on masking. We need people acknowledging that COVID is anything but “mild” in children.
It’s worth noting that Maggiore died three years after her daughter Eliza of AIDS related pneumonia…. But never publically changed her stance on HIV. Denial is powerful & cognitive dissonance a hard nut to crack. But children are counting on us. They need us to do better.
We can’t wait 30+ years to decide to start taking Covid seriously. History will not look kindly on adults who could have done more to protect children from the harms of repeated COVID infections. Just as it doesn’t look kindly on Maggiore and the AIDS denialism movement.
#CovidIsAirborne #CovidIsNotOver #CovidCautious #ChronicIllness #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #AIDSDenialism #CleanAir #Pandemic #PublicHealth

2024-06-04 03:15:51

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so honoured you included me - thank you! That may also be the first time my publication has been linked elsewhere (it’s quite new). Great and incredibly thorough article!

2024-05-30 09:55:12

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yes I often think of HIV and how you can be charged with a crime if you infect someone and didn’t disclose your status beforehand. Given the airborne nature of COVID I’m not sure we would ever get to that point though… it’s too hard to prove who gave it to you.

2024-05-30 09:53:21

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yes I’ve heard that! Transfusion reactions can be quite serious too (I’ve also heard some talk that people with mcas shouldn’t donate - though I don’t know if that’s a for sure rule)

2024-05-30 04:37:55

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exactly. Bit by bit they’ve made it impossible to exist in society if you’re at all compromised, high risk or even covid cautious. Every tool taken away, no meaningful reporting, no real ability to stay home and now… no masking.

2024-05-30 04:35:08

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
https://media.zeroes.ca/media_attachments/files/112/528/165/559/840/953/original/2d9237b3f58eda9c.jpeg

2024-05-30 04:29:06

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

2024-05-28 04:55:58

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you’re so welcome! I really hope it helps! I’m hesitant to share this kind of stuff since none of it seems particularly life changing … but little tips absolutely add up.

2024-05-27 04:48:46

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thank you for saying - it’s very kind. Dark days for many of us who feel like we’re being quietly disappeared.

2024-05-27 02:55:57

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My last tip is deep breathing and meditation. When a late night MCAS attack hits - it can feel almost identical to a panic attack. This is because of the adrenaline that’s being released along with histamine & other mediators. It’s incredibly scary until you get used to it
It’s important to remember that it’s an MCAS attack & it WILL pass. Keeping the brain calm is integral to calming the body. If prone to anaphylaxis you should have a safety plan with your medical team - but in the absence of life threatening symptoms I focus on being calm
Meditation, deep breathing, repeating a mantra… all of these things can be helpful. I focus on the breath & remind myself over and over that I’m safe & calm. Eventually my nervous system gets the message and begins to calm.
Meditation did not come easy - and there were times it felt futile and impossible. But I can promise the more you practice it the more effective it becomes. Most nights it’s second nature & I calm faster than I did without it.
MCAS can be a very difficult condition to manage and is highly individualized - so just remember what works for me may not work for others. There’s a lot of trial & error that’s required & being patient and kind to yourself is key to success
Remember that flares aren’t your fault - and sometimes we can do absolutely everything “right” and avoid every trigger and still end up in a flare cycle. It will pass. Remind yourself that. Reach out to friends & online community for support. It does get better
Epilogue: I wrote this after a week of nightly flares - I hope it helps others know they’re not alone but it was also to remind myself that this WILL pass. I’ve been dealing with it for years and it still overwhelms sometimes. 2/2

2024-05-27 02:55:56

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

2024-05-25 03:39:14

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a national delusion sounds right to me. Whatever small protection they offer is clearly outweighed by all the damage they do!

2024-05-25 03:38:39

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I really appreciate that explanation. Obviously I think people (and governments) need to adapt with the times and there’s something dreadfully wrong if you can open carry a gun but not wear a mask. But not much surprises me anymore!

2024-05-25 02:56:44

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thank you for saying! I wish more people realized how hard many of us work and just how resourceful we need to be to survive the day. Even if a magic place like my friend described existed - there’s a good chance I would get worse just by being there as they’re generally not designed for someone like me.

2024-05-25 02:55:30

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I’m sure it won’t work with everyone but it worked beautifully this time!

2024-05-24 23:50:18

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thank you both! That’s handy & I’m saving it for future articles

2024-05-24 23:24:06

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sorry are we saying this is likely untrue ? Or just that they lean far left?

2024-05-24 22:36:35

Seriously what the heck is happening in America? This article about abortion rights and fetal personhood is terrifying.
Women jailed for duration of pregnancy in horrible conditions. Women on life support forced to be incubaters against family’s wishes. Women charged with severe crimes for accidents while pregnant. Terminally ill women forced into c-sections. It goes on and on.
The overturning of Roe V Wade is very clearly not about JUST abortion. Women have no agency or control over their bodies anymore.
I would be genuinely terrified to become pregnant in States with these laws.
https://www.rollingstone.com/politics/politics-features/alabama-fetal-personhood-ivf-abortion-1235018366/
#WomensRights #DisabilityRights #Ableism #Pregnancy #Abortion #AbortionRights #roevwade #BodilyAutonomy #AbortionIsHealthcare #womenshealth

2024-05-24 10:00:27

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this is a great summary. I hear so often “I don’t care if I die” but as you said you try and bring up the possibility of disability and it does NOT go well. They act so brave in the face of death but they’re not considering all the other possibilities(and they probably don’t think they will die either - exception-itis is a real problem these days))

2024-05-24 09:58:43

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agreed! I wanted to scream “of course I looked! I’m the one sick and suffering and have been for years” but it’s just not worth it. People always thinks there’s some magic solution we just haven’t thought of because it helps them to believe that the support systems are better than they actually are.

2024-05-24 09:57:34

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I feel this so much! Sometimes I wish I could just film myself 24/7 for a week so people could see me at my worst, at my “average”
And at my best. Because as you say they judge you on your best day - and usually if I have a good day I pay for it in a big way. But people never see that part. They have no idea the depths of suffering or the effort I have to put in just to get through the day.

2024-05-24 09:55:10

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this is just… wow. I don’t even know when to begin with everything that’s wrong in this photo.
It’s all deeply sad. Will people have to make their masks into gun holsters to be allowed the freedom to wear them? I certainly hope not!

2024-05-24 09:54:05

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I agree - that’s one of the reasons I advocate for covid awareness and mitigations. I’ve been severely chronically ill for years and I know how lacking our systems are. They can’t handle any additional patients - they can’t handle the ones they currently have. Everyone thinks IF they get sick the doctor will just FIX them and they’re in for a rude awakening.

2024-05-24 09:52:52

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that’s the main reason I tried to show grace and patience - because they actually DID put in the effort. And I know many wouldn’t. They seemed genuinely frustrated and surprised at the lack of options - and my hope is that since they experienced it first hand perhaps they will be more understanding with the next disabled person they speak to.

2024-05-24 04:49:54

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there’s something to be said for consistency. The inconsistency of this is truly baffling.

2024-05-24 04:49:31

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I just can not comprehend how anyone could be ok with guns in public places but not an N95. There is no logic at play here whatsoever and it’s devastating to watch it play out and have all these freedom loving gun folks scream that it’s deserved.

2024-05-24 04:39:49

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I’m with you - I was shocked. I’ve come to realize there are some people who just genuinely think that if you’re dependent on others for most activities of daily living (as I am) that naturally equals burden.
I don’t agree- I believe the people who help me do it because they love and care for me - but sadly not all people see it that way.

2024-05-24 04:38:19

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aww thank you! I’m in Canada but I appreciate the offer. It’s great when people realize that masking is for both people!

2024-05-24 04:23:36

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

2024-05-24 04:18:21

I’m immune compromised - would you mask for me?
“No! Stay home forever!”
I can’t stay home I need food - can I order in?
“Do it yourself! It’s entitled and privileged to get delivery! SURELY you can use a microwave!”
I’ve got a family member to help me.
“Don’t be a burden!”
I need the hospital so I’m going to wear a respirator.
“Haha that’s illegal now!”
This is genuinely how it feels to be a high risk disabled person in society right now. It’s not enough that the loudest voices won and governments basically dismantled all covid protections, reporting tools, testing etc… they still scream at us for trying to protect ourselves. We stay home and rely on gig economy & delivery services and we’re exploiting others. We ask people to mask and we’re tyrants. We try to mask ourselves and we’re mocked and teased and now at least one US State is actively trying to criminalize medical masks.
Yet whenever I bring up eugenics I’m shouted down and told I’m exaggerating - despite the fact that a large portion of society very clearly doesn’t want disabled people to survive (and they certainly won’t lift a finger to help us).
It feels terribly bleak and I wish the “my freedom” crowd would recognize that disabled people are the canaries in the coal mine. Governments won’t stop with us. We’re just unlucky enough to be first.
#CovidIsAirborne #CovidIsNotOver #CovidCautious #sarscov2 #maskup #WearAMask #CleanAir #Pandemic #Disability #accessibility #DisabilityRights #N95s #Ableism #CommunityCare #Eugenics #MaskBan

2024-05-24 03:35:25

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thank you so much. Really glad you’re doing better now & that’s fascinating about your auto immune conditions. I guess the chemo took your immune system down a notch and settled those conditions too?

2024-05-24 03:34:30

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I find in general people don’t recognize a lot of the ways they could be high risk for LC. It’s terribly disappointing.
MCAS is another big impediment to getting the vaccine - higher risk of injury and of course anaphylaxis

2024-05-24 02:44:23

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this! Plus risk and benefit is unique to every person and I wish others would stop trying to assess it FOR us.

2024-05-24 02:43:21

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I also wish I knew why it’s so difficult for people. Just to give love, be a listening ear… stop the judgement. That’s all many of us need.

2024-05-24 02:42:28

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completely agree. Far too many people have no idea just how few services there are and how hard it is for most of us. When you try and explain it many either tell us WE are wrong, blame us or just tune out.

2024-05-24 02:41:32

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thank you.

2024-05-24 02:41:21

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they really are. Just complete denial about the state of healthcare, disability services, social services etc etc

2024-05-24 02:40:51

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that’s a fantastic way of looking at it. I hope your clients appreciate it!

2024-05-24 02:33:31

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thanks for the connection!

2024-05-24 02:31:03

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sure thing! I shared it in this post here - it’s quite thorough and really covers a LOT
https://zeroes.ca/@broadwaybabyto/112492430034618151