#covidcautious — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #covidcautious, aggregated by home.social.
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#ThrowbackThursday 2022.
I miss Dad very much 😢 ❤️ He's been gone for over 2 years now.
I remember this day well. It was an excellent family bonding day. We had a nice dinner after a short walk together. 3 months after this photo was taken, Dad had to go to ER for a leg muscles issue. He was infected with covid by unmasked hospital staff. It happened shortly after our eugenics government removed public masking mandates. Dad ended up dying from covid related cardiac arrest, the following Summer.I have never forgiven the #BCgovernment or #unmasked #hospital staff for killing my Dad. We had him fully protected with home #caregiving for years. It took less than 2 days in hospital for him to get #covid.
Please #WearAMask. Please don't let my Dad & others who died from getting covid from unmasked people, to be forgotten. It could be you or your family members, next. Covid doesn't care if you believe in it or not - it will end up wrecking your life, one way or another.
#AsianMastodon #RIPDad #CovidDeaths #CovidKills #MasksSaveLives #MaskUp #CovidIsNotOver #CovidSafety #CovidCautious #CovidIsAirborne #AirborneIllness #AirborneInfections #virology #medical #health #BCpoli #CDNpoli #BCNDP #BCNewDeathParty #Eugenics #FailureToProtect #PublicAccountability #PublicScrutiny #PublicTransparency #FireBonnieHenry #CovidFailure #BCMedical #BCHealth #MedicalMurders #SocialMurder #GovernmentPoliciesKill #FamilyPhotos #FamilyMemories
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Here is Part Two in my Series on POTS and Dysautonomia! This post focuses on the LONG road to diagnosis - and the gaslighting and barriers patients face along the way. The accusations of anxiety, the minimization of symptoms and of course the dreaded 'it's all in your head'.
I lost track of how many doctors worked me up - saw my very serious physical symptoms - and still said "What do you want ME to do about it?"
The answer was obvious - I wanted them to do their job. I needed them to think outside the box. To believe me when I said I wasn't anxious. To recognize that 'anxiety' isn't postural in nature. To figure out what was wrong.
It took years to get my diagnosis - and I hope my articles can help patients avoid some of the pitfalls and traps I fell in to. I want healthcare workers to read these posts and consider POTS the next time a patient comes in with unexplained symptoms like dizziness, tachycardia, fatigue and fainting.
There is hope. Things can and do get better. You learn how to manage symptoms, minimize setbacks and adapt to living life horizontally!
https://www.disabledginger.com/p/its-just-anxiety-or-perhaps-theyve
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 #gaslighting #misdiagnosis #dysautonomiaawarenessmonth
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“Don’t worry sweetie - they’re not as ugly as you think. I promise no one is looking at them THAT much.”
Doctors - this is NOT a diagnosis. How did I end up here?
I’ve got a strange problem with my ankles - they appear to be turning copper. It’s likely some kind of iron or blood staining - but that’s highly unusual in someone my age and could indicate a bigger problem.
I saw FOUR doctors - all of whom were concerned - none of whom could make a diagnosis.
So I waited 18 months for “the guy”. The top specialist who I was promised WOULD have the answers and be able to help.
Finally saw “the guy” and what did he tell me? That they’re not “that ugly”.
Rage. Blinding rage. Doctors - please stop doing this! It makes your patient feel awful, gives us the icks and is woefully unhelpful. Why?
- I never thought they WERE ugly
- I’m incredibly sick and don’t give a whit if people are looking at me or not. When you can barely stand up or feed yourself - vanity goes out the window pretty quickly
- Don’t call me sweetie. I’m a grown ass woman who’s older than you. Address me by my name
- Don’t assume that the only reason I could care about a health problem is “looks”
- Four other doctors were concerned about this as it could indicate a heart and/or vascular problem. “Not ugly” is NOT a diagnosis.
Needless to say I walked out with zero answers (unless you count knowing that this one random man doesn’t think my ankles are ugly as an answer).
I have to go BACK on another wait list which will likely be even longer because you’re penalized for not deigning to accept misogynistic bullshit as treatment.
Me and my “not ugly” ankles will be over here seething with rage and frustration - working on an article about dismissiveness and misogyny in medicine and how much it harms the patient.
#misogyny #misogynyinmedicine #medicine #healthcare #misdiagnosis #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
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Someone emailed me and told they took my Intro to POTS/Dysautonomia article to their doctor - and now their doctor is taking them seriously and exploring it as a diagnosis!
I’m genuinely over the moon. When I started The Disabled Ginger my hope was to empower patients to learn as much as they can about their conditions, accept their disabilities and start accommodating them, and also to help educate healthcare workers.
I try and make my articles accessible for patients and their loved ones as well as medical professionals who might be willing to read them.
Conditions like POTS are barely touched on in medical school and often misdiagnosed. Doctors don’t know what to look for and/or aren’t listening to their patients.
If my articles can help bridge that gap - it makes all the work and exhaustion so worth it.
I’m hoping to have Part Two: “Maybe it’s Anxiety - Maybe You’re Misdiagnosed” done this week… and it will cover the long road to diagnosis as well as my story about HOW I finally figured out I had POTS.
If you missed the first article - Living Life Upside Down - it’s here:
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 #DysautonomiaAwarenessMonth
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It’s POTS Awareness Day. I forgot because (ironically) I’m dealing with monster coat hanger pain… something common in POTS.
It’s a terrible headache that encompasses your neck and upper back - it basically forms the shape of a coat hanger!
It took me years to realize the coat hanger pain was from my POTS. Years of suffering through debilitating headaches and back pain that painkillers couldn’t touch.
I tried massage, heat, ice, stretches, laying in a dark room…
Nothing worked.You know what DID work? IV saline. When I get IV fluids I can feel the pain start to melt away. Relief tends to start at the top of my head and slowly moves down to my shoulders and back - the pain is generally gone after 1-2L.
It’s incredible just how much your body can be impacted by POTS. I’ve been dealing with this condition for years and I’m still learning new things every day.
It’s also a common comorbid with Long Covid. If you’re new to POTS, think you might have POTS or just want to learn more - I wrote an intro guide linked below:
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 #DysautonomiaAwarenessMonth #POTSAwarenessDay
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CW: Medical trauma, surgery, gaslighting
When I was 16 I developed a foot infection that necessitated surgery.
It was done under local anesthesia - only the anesthetic didn’t work.
I screamed and begged them to stop - but I was held down and called “hysterical”. Told to “calm down” and that it was “all in my head.”
I was restrained, belittled and repeatedly told to quiet down. I was given a sedative that did absolutely nothing.
I remember leaving the hospital in tears - clutching the small handful of pain meds they had deigned to give me.
I began questioning myself. Maybe it didn’t hurt that much? Maybe I was just squeamish and overreacting?
After all - THEY were the experts and they all told me that there was absolutely “no way” I could feel the scalpel cutting me.
The foot became infected - and I had to go back for THREE revision surgeries. I was so young that I didn’t know HOW to advocate for myself. I didn’t understand I could request a different doctor. I hadn’t yet learned to trust my gut.
Every surgery was the same - with local anesthetic not working the way it should. Not ONCE did anyone stop to consider that maybe I was telling the truth. Or to ask WHY an otherwise healthy 16 year old was having so many complications.
It was a huge missed opportunity - diagnostically speaking. The lack of reaction to local anesthetic is a common feature of EDS - as is poor wound healing. The blood pooling and neuropathy were early signs of POTS. Both were missed because all they saw was a young female and assumed I was “hysterical.”
That infection ended up ruining an entire summer for me. I needed IV antibiotics and home nursing to come and pack and re-pack it. I was in a wheelchair for a month and crutches for almost 6 months after that.
Unfortunately - the experience took more than a summer away from me. It took my innocence. From what point onward I no longer believed that the hospital was a place to go to “better”. I didn’t trust healthcare workers the way I did before. I was guarded, traumatized and angry.
Decades later I would learn that the surgeon who operated lost her medical license after being caught not washing hands or sterilizing instruments before procedures.
She was PURPOSEFULLY negligent with multiple patients - but it took years for anything to be done about it.
How many others were hurt like me? Did she treat other minors? Disabled patients? Could I have done anything to stop her?
These questions haunt me to this day - because I suffered so much and it was completely preventable.
This isn’t a unique story. Patients are taught that doctors know best. The culture of medicine encourages silence. We are dissuaded from speaking up or questioning authority.
medical school tends to reward those who “fall in line”… you don’t get ahead by rocking the boat.
If you’re disabled or have complex chronic illness - odds are you’ve got at LEAST one horror story of your own. Probably far more than one.
We have to interact with the system more than our non disabled peers - and we’re often treated worse by default.
This experience was only the first of many. It wasn’t even the most damaging thing that I’ve been through.
It’s events like this that made be become an advocate. I’m so disgusted by how I’ve been treated that I refuse to be silent anymore.
Because it isn’t just about ME. This is a problem the world over - and disabled people are the canaries in the coal mine. We often get the worst of the medical mistreatment - but no one is immune.
We need to change the system to a more understanding and collaborative one.
Patients deserve to be partners in their care. They should be treated like the experts they are. We may not have a medical degree but no one knows our body better.
Listen to us. Believe us. Don’t intentionally cause harm. Wear a mask - show us you care about keeping us safe.
For more on the lessons I’ve learned over years of interacting with the healthcare system - I’ve written a five part guide designed to make the hospital experience easier on disabled and chronically ill people (and those who love them).
All the articles are in this round up I just posted today:
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 #misogyny #negligence #donoharm #malpractice #hysteria #believepatients
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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
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Get ready to join us for an unforgettable experience at our upcoming Accessible Virtual Pride on August 31st & September 1st, 2024! We're thrilled to invite you to a celebration of diversity, inclusivity, and love, uniting the LGBTQAI2S+ community and our allies in a safe and COVID-conscious environment.
#acccessiblepride #queer #enby #trans #covidcautious #virtual #virtualpride #2SlLGBTQIAA+ #pride2024 #PRIDE #disabled #disability #prideevents #polyam
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CW: Wildfires, air quality, covid, climate change
Looks like my area will be back to dangerously unhealthy air quality levels tomorrow because of the #wildfires in Canada. The air is already getting hazy again. Sigh.
I'm weirdly grateful that being #CovidCautious has prepared me for this because I have N95 masks and air filters, but I also worry about those who aren't as privileged. I also think it's appalling how obvious the need for both #ClimateChange action and improved ventilation are, yet we seem to be sliding backwards on these issues instead of addressing them with the urgency we need.
Anyway, I hope everyone is staying safe, and #WearAMask!
#ClimateCollapse #ClimateJustice #AirQuality #AirQualityAlert