#longhauler — Public Fediverse posts

#C19LAP member, division lead & 4 year #Longhauler @TammyWilshire1 speaks with @pfizer for their “Dear Scientist” series.

Pfizer developing ways to study the disease & partner w/ orgs, med centers, & clinics to investigate potential treatments.
https://sponsored.bostonglobe.com/pfizer/long-covid-dear-scientist/

@ThunderHoneySnow
We've long suspected something like this action. It certainly helps account for why I feel this way all the time. Since my infection in June of 2022, I have not been the "same person".

Take it from a #longHauler... Do NOT get #covid, ever.

#staySafe #wearAMask #covidIsNotOver #covidIsWorse

Fresh #introduction for 2024: The Year It All Comes Crashing Down!

I'm Sean - a formerly prolific rock #musician, current #foss engineer, full-time #audioEngineer at a busy roadhouse #theatre and #covid19 #longHauler, almost 2yrs with #pem, #pots, and an host of other goodies. #wearAMask #saveALife

I like working on projects that enable marginalised persons to take back their autonomy on and offline. I subscribe to #diy and am a voracious #autodidact. I make #bots for #mastodon and the #fedi. I'm building a replacement for #bandcamp and #spotify.

I care about all #humans and #animals on this planet, an am strongly aligned against their destruction via a #socialist #anarchist education. I'm against all #fascists, and call #bullshit where I see it, and I see every #microexpression. I'm pretty #autistic.

I #protest for #humanRights, #disabilityRights, #lgbtqRights, against #climateDestruction, #corporateGreed and for a #ceasefireNow in #palestine.

I educate myself on the world around me - with help from y'all - and I do my best to educate and #lift those around me.

I'm friendly, weird, and irreverent. Feel free to follow, boost and interact. This is a social media!

If you could give the world a message about #longcovid in 1-2 sentences, what would you say?

#PSA #C19LAP #Longhauler #IACC #InfectionAssociatedChronicIllness #COVID #disability

What have you developed as a result of #LongCOVID?

#LongCOVID is systemic and results in a collection of associated conditions, making care extremely difficult to find and/ or coordinate. These specialties lack interest and therefore clinicians and researchers within. We need more clinician education and research into these conditions!

#C19LAP #Longhauler #IACC #InfectionAssociatedChronicIllness #med #COVID #disability

The only way to #preventlongcovid is to prevent #Covid. How do you prevent infection?

#C19LAP #Longhauler #IACC #InfectionAssociatedChronicIllness #medtok #COVID #disability

What type of medical provider have you found most helpful in managing your #longCovid (if found).

#C19LAP #Longhauler #IACC #InfectionAssociatedChronicIllness #COVID #disability

#LongCOVID is a complex and systemic illness, requiring multi-specialty care and coordination. The underlying mechanism of #longCOVID has not yet been proven, but several theories have risen to the top of the list. Preventing #COVID -19 is the only way to prevent #LongCovid.

#C19LAP #Longhauler #IACC #InfectionAssociatedChronicIllness #medtok #COVID #disability

@augieray I love that on other social media networks I am having to block COVID deniers liberally, and I open up Mastodon and this is one of the first things I see. ❤️🙏🏼

As a #LongHauler I feel like I live in a different reality than the “back to normal” crowd, and it’s nice to not be alone.

@everyone

Have you found a COVID-Competent provider?

Help others find local medical providers who won’t waste their time or spoons and are familiar w/ #longcovid and it’s associated conditions! Add a provider to the list! https://docs.google.com/forms/d/e/1FAIpQLSc460ZIEcwm2gOjeDtOlIq2KZWgfw5NUIBUqKuiQ1nRO_dQ_A/viewform

Check out the current list: https://docs.google.com/spreadsheets/d/1qRz6jcMX2Yx7_prnJqdBQFXgVJE_CgZSlIYNshW3XJM/htmlview

#longhauler #fblc #longcovidawareness #medtwitter

Anyway, please sign this petition.

"In March 2022, the U.S. Government Accountability Office estimated that 23 million Americans had developed Long COVID. Nearly a year later, studies suggest that number could be as high as 41 million. Yet there is no cure or treatment available."

#LongCovid #LongHauler #PASC #Artist #BrokeAsHell

https://actionnetwork.org/letters/help-end-the-long-covid-crisis?source=direct_link&

it is hard to think or do anything. I wait for doctor's appointments, I wait to hear about my long covid clinic referral, I'm broke and dependent on my spouse, my medical history is too limited to apply for aid.

I take vitamins, monitor blood pressure, go outside every day to get a little sun and move small things around in the yard, and try to read and paint, but mostly sleep. It got easier for a little bit, but now it is more difficult.

#LongCovid #LongHauler #PASC #Artist #BrokeAsHell

"Long COVID poses unprecedented risks for the country that could rival the Great Depression. According to David Cutler, an economist at Harvard University, Long COVID could cost the economy $3.7 trillion in lost wages, increased medical expenses, and reduced quality of life. In 2023, up to 4 million Americans between 18 and 65 are missing from the workplace due to Long COVID."

#LongCovid #LongHauler #PASC #petition

https://actionnetwork.org/letters/help-end-the-long-covid-crisis?source=direct_link&

Spread this around to all your long covid pals and the people who love and support them.

#LongCovid #LongHauler #Covid #PASC
https://actionnetwork.org/letters/help-end-the-long-covid-crisis?source=direct_link&

I just wrote the @LongCovidAP
letter "Help End the Long COVID Crisis" to send to government — Write one here:

#LongCovid #LongHauler #PASC

https://actionnetwork.org/letters/help-end-the-long-covid-crisis?source=direct_link&

This week I will learn how to support myself financially while struggling with long covid, will thread what I learn here, and I'd love if anyone with insight into this can weigh in with their experiences.

I'm reading the Long Covid Survival Guide, and am finding it very helpful. I checked it out online through the local library. Online library services are my favorite thing now.
#LongCovid #LongHauler #FinancialEducation #Disability

https://theexperimentpublishing.com/catalogs/fall-2022/long-covid-survival-guide/

"You never can tell what another person is going through. Since experiencing long COVID, I understand this saying in a whole new way. I don’t look sick, but sometimes I struggle to remember where I am, or I have a panic spiral because I don’t know where to sit at a restaurant, or I can’t read signs."

#longcovid #longhauler

https://magazine.alumni.ncsu.edu/2022/the-long-haul/

Another thing that bothers me from a #ChronicIllness perspective is how Kindle praises you for each book read and wants to turn your reading time into some kind of incentive program reminiscent of summer library reading programs for kids.

Except it doesn't give me a free personal pizza, it just reminds me that I can't read as much or as quickly as I used to. I don't want reading to be a score I'm trying to rack up. It's one of my great pleasures in life, and I just want to enjoy it when #BrainFog and small children permit.

Another one where I disabled notifications.

#MECFS #ME #CFS #Fibro #fibromyalgia #LongCOVID #LongHauler

Slowly figuring out how to make the Fitbit work better for #pacing. It's set up to be constantly all "rah! rah! climb those stairs! burn that fat! get that heart rate up!" quite aggravating, to say the least.

But I think I got most of its little cheers turned off, and I figured out I can set my own maximum heart rate. The fitbit still thinks I should be in higher "zones" as much as possible, which is annoying.

I just programmed a custom zone, though, which goes from 10bpm above my resting rate to 5 below my max. Hopefully I'll be able to see on the graph when I've been exerting a little but not too much.

#PEM #PESE #PENE #MECFS #ME #CFS #fibromyalgia #Fibro #ChronicIllness #LongCOVID #LongHauler

So far, so good with the #pacing.

Still getting the feel for some of the more difficult-to-quantify symptoms, but wearing a heart-rate monitor is helping me identify how it feels when I'm pushing a little or a lot.

Also using the Visible app, which seems useful so far. I needed a low-maintenance way to track symptoms, and I'm interested to see what trends build up with heart-rate variability.

Please feel free to share your own experiences!

#LongCOVID #MECFS #ME #CFS #fibromyalgia #fibro #PEM #PENE #PESE #LongHauler

SIGN-UP FOR OUR #SECRETSANTA CLOSES TONIGHT!

We currently have 30 people signed up. We have added a virtual gift opening for Dec. 23rd! Please join us in the fun! bit.ly/3W0ycfj #LongCovid #longhauler #spoonie #chronicillness #support

💪 You know what to do to smash a stigma. Be an ally, talk about #LongCovid to normalise it. :virus: As a #Longhauler, share your experiences and make your needs clear. 💪 https://theconversation.com/long-covid-stigma-may-encourage-people-to-hide-the-condition-194939