Riemerville
@Riemerville
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Following
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Media
2,126
Statuses
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Wake me up when this is over #LongCovid #POTS #ME #CleanAirHealthySchools
Texas, USA
Joined March 2009
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Pinned Tweet
Long haulers, If you are 95-100% confined to your bed, kindly share your Twitter handle in this thread. I am 99% bed bound and curious how many of us are out there.
#LongCovid
#LongCovidKids
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@hashjenni
I’ve got an Emily Post etiquette book from the ’50s, and it actually suggests changing into your pajamas and discussing all your to-dos for the next day. 😆
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@notcapnamerica
For the record, I didn't list my seasonal job at Honey Baked Ham on my post-college resume.
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Don’t be like me and think Long Covid won’t happen to you. Six months ago, I was unmasked and fully vaxxed living life again. Now my husband brings me 3 meals a day. This article is too familiar👇
#LongCovid
#COVIDIsAirborne
I have a piece out today in
@sfchronicle
asking a pretty simple question about
#LongCovid
:
In a pandemic of personal choice, where is the public warning for the most likely serious outcome from infection? 🧵
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For those insisting that PEM is the only symptom of ME/CFS, please take a look at the full range of symptoms.
I developed ME from Covid, and now I have both Long Covid and ME. I experience all of these symptoms firsthand.
#ME
🧵 Thread: Understanding ME/CFS Symptoms 1/18
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A perfectly healthy, active friend caught Covid in Mexico last week and had a heart attack two days ago.
His wife is now struggling with Covid and the flu.
#CovidIsntOver
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@EdKrassen
If Texas doesn’t purge votes, which they are known to do, Texas could go blue. Mark this post.
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My sister's doctor's thoughts got scrambled mid-way through the conversation, said she said her brain hasn't been the same since she had covid. My sister told her about my situation & doc responded that she doesnt talk about it bc she doesnt want to give Covid any power🤦♀️
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My cousin just recovered from her 3rd Covid infection, saying it was "super mild" compared to July. She quoted
@nytimes
suggesting mild infections indicate immunity building🙄
When I shared
@AliceParkNY
’s piece in
@Time
mag, she was stunned.
What CDC?
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My child, who tested negative for Covid last week despite having symptoms, has now been diagnosed with appendicitis😭
“Positive association between COVID infection and subsequent acute appendicitis in pediatric patients less than 3 months after COVID”.
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@krassenstein
I said this in 2016 and I'll say it again: when a president behaves like this and parents, teachers, coaches, minsters, and others still go to his rally’s and vote for him, what message does that send to our youth? Why should they act decently when the adults in their lives
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My sister, who was in the ICU back in 2021 when she had Covid, has signs of
#LongCovid
, but she can not find a doctor in the Dallas area who takes her Long Covid symptoms seriously. 🧵1/6
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My son was out a week bc of Covid, got this email from his school 🤦♀️ “This message is just to let you know that you currently have 8 absences in English. Once a student reaches 9 absences, you will need to appeal to your teacher for credit”
@DeathPanel_
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And what causes loneliness? Being mostly bed bound for almost a year with no real cure in sight. I loved my life before covid. This loneliness epidemic is gonna get worse if y’all don’t start focusing your resources on Long Covid🤦♀️.
#LongCovid
#MyalgicEncephalomyelitis
NEW: Today, I released a Surgeon General's Advisory on the epidemic of loneliness and isolation facing our country, the destructive impacts it has on our collective health, and the extraordinary healing power of our relationships.
#Connect2Heal
1/8
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@teewatterss
This reminds me of when my husband wanted to buy a car and drove it home with the salesperson for me to check out. I told him I didn’t like it because the seat wasn’t comfortable. The sales guy later told my husband his mistake was including me in the decision-making process.
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She was only 21💔Did anybody offer her a beta blocker? All the test were “normal”, so my guess is no.
#POTS
This is 21 year old Emilia Brangefält, a champion trail runner from Sweden. This week she killed herself because of long covid, which left her with a resting heartrate of 120-150bpm, which made even walking painful. It appears she was infected this summer.
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Yep- I haven’t worked in two years. It’s depressing.
“Never before have so many Americans redrawn their relationships with work as result of 1 public-health crisis”
“People at height of careers in finance, technology & healthcare are operating without clarity on when, or if, they can resume the paths they once laid out”
#LongCovid
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My son, who's turning 16 tomorrow, has Covid. I believe we've covered all the bases, but what's your go-to Covid advice?
#CovidIsAirborne
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This man has kept his vows in the most beautiful ways. His unwavering love & support through this Long Covid journey is why I’m here today. Cheers to 21 years!
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Today marks my second bedbound birthday due to
#LongCovid
. Though I've progressed compared to a year ago, I am still bedbound. My birthday wish is for a
#LongCovid
#MECFS
#POTS
medical breakthrough🤞.
#FlagDay2023
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@Thekeksociety
No, I think it’s how old southern men treated women they cared about. It’s cringey but not unusual. She is just playing along bc that’s the culture.
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I implore all allies of Long Covid not to let anyone overlook ME in the Long Covid conversation. It might be confusing, but many of us were healthy until Covid, and now we're
bed bound with a severe ME version of Long Covid. ME and Long Covid must be studied together.
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6/6
What the hell is going on with these doctors? Why is no one taking Long Covid seriously? My sister, and so many others like her, deserve better. If you know of a good doctor in the Dallas area, please DM me.
#LongCovid
#MedicalGaslighting
#MedTwitter
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I watched this video at least 25 times 😍🥰
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Fellow Texan here🤘
I've been bedridden for two years because of Covid. I'd give anything to get back to life—if only I could stand for more than 10 minutes or walk over 700 steps. There are over 20 million Americans now dealing with multi-organ damage from Covid.
You’ve been
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I feel terrible today- I am over it all. I have always been an optimistic person - as of today, I am empty. I don’t see any light at the end of tunnel. Being this sick for almost 19 months is a living nightmare. I can’t take much more of this.
#LongCovid
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@oneunderscore__
@AlyssaW667
Close. I wish they wouldn’t say “Austin Based”? He is new here and hardly based in Austin.
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The biggest tragedy in this whole mess is that I've always believed in mind over matter my entire life. But let me set the record straight: no amount of willpower can cure this damn illness.
#LongCovid
#MECFS
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I totally didn’t expect this from Psychology Today👏👏
#LongCovidAwareness
Psychology Today: 'Long COVID Is a Disabling Disease—And It’s Not Rare'
'Today is International Long Covid Awareness Day, and the millions of people struggling with life-altering symptoms of Long Covid need us to pay attention'
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@KeneAkers
Racism wasn't tolerated in our house while we were growing up. What's disappointing is seeing how Fox News has rotted their brains. The way they dehumanize Mexicans bc of Trump makes my stomach turn. I do my best to point it out every single time.
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I am not even kidding, this is going to be me when recover from long covid.
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I have never wanted anybody to get cancelled more than this Nevada piece of trash.
#FirehouseSaloon
#EndRacism
I don’t usually share stuff like this but this was so horrifying, I want Foodie Nation members in Nevada to know so you can avoid this place. This is at Firehouse Saloon in Virgina City. Y’all take care of each other out there❤️☮️💔
@VirginiaCity
#FirehouseSaloon
@TizzyEnt
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1/6
Last night, I felt a PEM crash coming on & realized I hadn’t been drinking my Taurine water. I quickly chugged half a glass and it seemed to help a lot.
Today, I woke up with pre-PEM pain & again felt better after drinking Taurine water.
How does Taurine help w/ PEM?
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Recently, I decided to be honest over comfort when friends ask about my well-being. When I admitted I wasn't okay to two different friends yesterday, neither responded. I suppose I had fear this would happen, but it still hurts.
#LongCovid
#ME
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@krassenstein
Conservatives willfully oversimplify complex issues, intentionally neglecting the intricate nuances needed to effectively solve problems. Their narrow focus on serving ONE demographic is what has led us to our current problems today.
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PEM is horrible.
During a PEM crash, I can't lift my head, my body feels paralyzed, I can't speak, & I'm extremely sensitive to light, sound, & touch. My brain feels like electric jello.
It's unbelievable some twit accounts are posting PEM jokes🥴. Do better.
#LongCovid
#ME
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In the past 4 years, class sizes at my son’s AISD middle school soared from 15:1 to 33:1 due to staff cuts.
- AustinISD sends $1B annually for recapture.
- Texas has a $33B surplus but refuses to invest in public education.
- The Permanent School Fund(PSF), with $56B in 2023,
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After almost 2 years confined to bed, I finally said yes to a friend's idea of setting up a meal train for us. Can't believe I waited this long – now we enjoy delicious, worry-free dinners delivered 3 days a week! Lesson learned: Accept help when it's offered💜
#LongCovid
#ME
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5/6
Incidentally, when she was being checked in, she told the nurse that she had heart palpitations and hadn't felt right since Covid. The nurse's response? "People tell me that all the time."
#LongCovid
#MedTwitter
#MedicalGaslighting
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I want to hug the person that did this🤗Kyle, Texas, about 20 min. south of Austin, on I-35, one of the country's busiest highways. To the south, you'll find San Marcos, home to Texas State University, and further south, San Antonio. This sign is getting tons of exposure🥳
Want to put a giant-ass billboard up in your community so they can’t ignore Long Covid anymore? It doesn’t have to be hard or expensive.
This one, in Kyle, Texas, cost $14/day. 1/
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@AnnieForTruth
You can’t make this up. I hope one day he embraces the true, authentic Charlie.
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@realTrumpNewsX
Yes, I am surprised it’s only 3% difference. I know many( can’t even count) conservative christians in Texas who are voting for Kamala. Texans have had enough.
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Feeling hopeless and in desperate need of hope. Wondering if anyone who was bedridden for over 21 months has made a recovery and, if so, what helped them get out of bed.
#LongCovid
#MELC
#ME
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18/end
Raising awareness about Long Covid & ME/CFS is crucial. Let's continue to educate and support those affected by this challenging condition. 💙
#ME
#LongCovid
#ChronicIllness
#InvisibleIllness
#JohnVsJonVsME
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2/6
Last year, she told her GP that her lungs felt very weak and hadn't felt the same since Covid.She asked if it could be Long Covid. His response? "There's no such thing as Long Covid.
#LongCovid
#MedicalGaslighting
#MedTwitter
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I'd speculate that the 0-17 age group probably experiences a high prevalence of LongCovid as well, but they lack the vocabulary to articulate it. Even if they do, parents and doctors are likely to dismiss or gaslight😔.
#LongCovid
#LongCovidKids
Long Covid is disproportionately impacting younger groups. The rate is significantly higher in 18-49 year olds, according to DOH in Washington State.
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Recently, she noticed vascular splotching all over her body. Her gynecologist noticed it, too, and suggested she see a cardiologist. So, she went back to her GP first. The GP? "It's just anxiety." But my sister, who is not anxious, insisted and got the referral.
#LongCovid
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4/6
At the cardiology appointment, the doctor told her that the splotching was due to weather changes and that she should see a dermatologist. When she mentioned her feet turn purple when she stands, the doctor’s answer? "That's just gravity."
#LongCovid
#MedTwitter
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2/18
Post-Exertional Malaise (PEM): The hallmark symptom. After physical or mental activity, symptoms worsen, often delayed and lasting days or weeks.
#LongCovid
#ME
#PEM
#JohnVsJonVsME
For more:
New Video: Post Exertional Malaise is the hallmark symptom of
#MECFS
and is also common in
#LongCovid
.
Video explains the abnormal response to exertion, triggers, symptoms and management.
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@KeneAkers
Her energy is powerful and that scares the hell out of people. On a positive note…When my son was 11, he read Becoming and to this day(almost 16) he references Michelle Obama as an inspiration.
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The quote of the year👏👏👏👏👏🔥
"We proof buildings for earthquakes that happen once every 50 or 100 years. We invest millions.
Why can't we do the same thing to make sure that our buildings are proofed against natural hazards like airborne pathogens?"
@zalaly
on the urgent need for clean air
#HELPLongCovid
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3/18
Chronic Fatigue: Persistent, overwhelming fatigue that isn't relieved by rest, affecting daily life significantly.
#LongCovid
#ME
#JohnVsJonVsME
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I’m planning to host a Space this Saturday at 6pm PT / 8pm CT with special guest
@LieslMcconchie
. We’ll be discussing how to advocate for clean air in schools. Stay tuned for the space link!
#CleanAirInSchool
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This resonates deeply with me. Like Dianna, I’m fortunate to have a supportive husband, friends, and a doctor who helps lighten the load, but living with this condition is still incredibly isolating.
Why isn’t ME/CFS taught in medical schools?
#LongCovid
#ME
#MECFS
is unimaginably isolating, especially for severe patients like Dianna. The disease just doesn't make sense; even for me, it's taken a year of caring for her every day to start to understand.
To get a sense, Dianna has spent the last year and a half in her room, unable to
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5/18
Cognitive Impairment: Often called "brain fog," it includes memory issues, trouble concentrating, and slowed information processing
#LongCovid
#ME
#BrainFog
#JohnVsJonVsME
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4/18
Sleep Disturbances: Un refreshing sleep, insomnia, or other sleep issues are common
#LongCovid
#ME
#NoSleep
#JohnVsJonVsME
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Way to go,
@UTAustin
!!
Researchers say they found an antibody that protects against all COVID-19 variants | KXAN Austin
#CovidIsntOver
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@cdtwriter
To date, acupuncture is the only thing that truly helped get me walking. I am only at about 700 steps but it’s better than nothing.
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Y’all, I haven’t had a PEM crash in over six weeks. I am still experiencing POTS and full body fatigue, but as you know, the crashes are the absolute worst. Today, I am cautiously hopeful that some sort of healing is happening🤞✨
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Turns out parenting from bed is nearly impossible. I don't recommend it. If you're a parent, avoid getting covid.
#LongCovid
#ME
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Thank you,
@LisaAMcCorkell
for your amazing presentation on the next steps forward. I really hope the NIH takes it seriously.
In case you missed it, I created a thread of Lisa's presentation 🧵1/8
#NIH
#TreatLongCovid
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@smenor
@RepMaxineWaters
@kharyp
I can't handle another year. Come on,
@RepMaxineWaters
,you got this!
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6/18
Muscle & Joint Pain: Widespread pain, including muscle aches and joint pain, with& without inflammation
#ME
#LongCovid
#JohnVsJonVsME
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LC/ME, Have you tried Vagus Nerve Stimulation? If so, do you recommend a device?
#LongCovid
#ME
#LC
/ME
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@notcapnamerica
There is absolutely no way people can survive without air conditioner in Texas.
I am sick of their bullshit op ed. I cancelled NYT a year ago.
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Four years after COVID’s arrival, Austin’s 'long haulers' still search for answers | KUT Radio, Austin's NPR Station
#LongCovid
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8/18
Sore Throat & Tender Lymph Nodes: Persistent sore throat and swollen or tender lymph nodes, usually in the neck or armpits.
#LongCovid
#ME
#JohnVsJonVsME
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11/18
Sensitivities: Increased sensitivity to light, sound, and temperature can be debilitating
#LongCovid
#ME
#JohnVsJonVsME
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A neighbor surprised me with a note and bouquet at my doorstep this morning. Little gestures like this mean so much! 💜
#LongCovid
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@notcapnamerica
This is 100% bullshit & disgusting. They are trying to blame the few months of Covid Lockdowns on developmental delays. When if children are showing cognitive delays, it’s from Covid.
‘Our findings reveal that a substantial proportion of pediatric COVID-19 patients with
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7/18
Headaches: Frequent or severe headaches, including migraines, are often reported.
#LongCovid
#ME
#Migraines
#JohnVsJonVsME
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@LePapillonBlu2
It’s a package deal for me. Trump & the people who know better, but still empower him. Looking at
@seanhannity
@TuckerCarlson
and the rest of rhem
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9/18
Dizziness & Orthostatic Intolerance: Difficulty standing or being upright, leading to dizziness, lightheadedness, or fainting (often related to POTS).
#LongCovid
#ME
#POTS
#JohnVsJonVsME
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16/18
Neurological Symptoms: Numbness, tingling, or other neurological symptoms may be present
#LongCovid
#ME
#JohnVsJonVsME
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Today, I brushed my teeth, changed clothes, made coffee, and heated lunch. Slow and steady.
#LongCovid
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@domiono
A newish discovery for me is when they tell you who they are not.. they are usually lying and telling you they are.
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