Patients and allies came together in DC to get the attention of policy makers in March. Did they listen? No. Did they attend? No.
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We will not stop trying to protect our fellow world citizens.
I just think everybody should know that our school district is doing free heart assessments/EKGs for students this year out of the blue and I think that's a little strange they're not saying why but we all know. Covid, it's not over!
Just had to send the RSVP for the family party. Third year of saying no. It breaks my heart. Our family has been completely done over by the past 4 years. Here is what I wrote. I haven't told the extended family but it's time.
I can vouch for this. 5th infection led to a stroke within weeks. My symptoms are terrible now. Any activity makes it hard for me to speak properly or have functional cognition. Problem solving is becoming increasingly difficult as is the ability to stay even tempered.
No positive test. At all. Is this Eris strain ultra evasive or what?! I cannot believe the lack of accurate tests. My son only tested positive one day?! This is a major problem. Our tools are dwindling. What a disaster.
#POTUS
do something!
My 16 year old just came in. He asked how I am. I told him a little bit about how I am feeling. He cried. I cried. He told me I have to keep fighting. He says they will find a cure. My heart hurts so bad for him.
#pwLC
#LongCovid
#pwME
Here in the hospital I used to work at. Day three. Finally got a room (shared). I don't know what the plan is for me but they are nervous because
A- They see my symptoms and labs that show I am not well at all.
B- Hardly anyone knows the effects of Long COVID so this scares them
I tried to be a good patient.
I listened to my doctors.
I waited for them patiently even when appointments were stretched apart and I barely got a few minutes with them.
I came prepared with notes of my symptoms since I have speech and memory problems.
I asked their opinions.
Hello, I will not be able to attend. I am now in my third year of severe Long COVID. I wish I could see you all but my B cells count is low and I get sick very easily and it wrecks me every time. Have a wonderful Holiday Season. Big big hugs! Take care of each other.
I just had to have the "If I die" talk with my FIL. He is the only one that can handle stuff if I pass on. I have been steadily deteriorating and am getting really scared. I cannot see the future the same way anymore. I painful cried so hard my throat is swollen.
#LongCovid
If you had Long COVID for four months and recovered and believe it was because you did something to make that happen, sorry, some people clear the virus and get well. Some people no matter how well they eat, try to exercise, and take supplements don't get well. You got lucky.
People really think Covid is gone. My PT had no idea people could be so sick from it and have so much happen to the vascular, GI, neurologic, and immune systems. She said wow, a lot of people probably have LC and don't know.
Rheumatology dumped me because they have no answers to Long Covid.
Neurology dumped me because they have no answers for Long Covid.
Cardiology has dumped me because they have no answers for Long Covid.
So many more have dumped me because I have Long Covid.
I am giving up.
This also annoys my doctors.
They ask me to take it off and I have to for oral exams but I don't for anything else.
This gets me psychologized.
I am slowly but surely giving up on doctors now.
We are giving up on each other.
Trust had been broken between us.
It's in disrepair.
When you have a new kind of condition or illness most doctors don't have time to figure it out.
They are swamped with regular patients that fit neatly into tried and true diagnosis.
I unfortunately have Long Covid.
My doctors have been waiting on the science to give answers.
I think Long Covid clinics need to be done away with and all primary and emergency doctors need to learn how to recognize signs and symptoms of Long COVID. Plus learn what tests to do and then which specialists to send patients based on that info.
I didn't try to bother them unless it was an emergency and something that was urgent.
I haven't overused emergency services even when I felt like I didn't know if I would make it through the night sometimes.
But no matter how well I behaved, most of my doctors still rejected me.
I will be blunt. COVID is still killing and disabling. My friends and family are still deteriorating. I had a second stroke two weeks ago. I cannot make it through the day without crashing and losing my speech ability. It's even affecting our president obviously. Neurocovid.
I am not okay with people telling others that vaccines prevent long COVID. It's misinformation and it's dangerous. Nobody wants long COVID. It takes everything in your life away. It's truly the most horrible illness. I want my life back and we need real therapeutics.
I had to go to the dentist today. I have been going to him since the kids were very small. Like 15 years. He is lovely and very smart. The whole office is still masking. Guess what? He had not even heard of LC. He just didn't want anyone to get sick. He is going to study LC now.
After 3 years of being bounced around, they all gave up on me and science.
I decided to try an antiviral that is widely available because there is a valid study on it happening.
I was transparent about this and asked for opinions.
I did all the labs.
I am not even to the 2 month mark of trialing it.
I have improved in small ways with activity levels on some days.
Overall it's been slow though.
I also have been quite ill some days.
My immune system is not great so I get sick a lot.
So I wear a mask to appointments.
This is my 3rd birthday having Long COVID. No party, no cake, no celebration. Just another year older with an illness that won't leave my body. Happy 44 to me! On the plus side I have my family and all of you! Thanks for brightening my days!
My room is dark, my humor is dark, my thoughts get dark too. On the other hand my soul is light and my voice continues bringing light and honesty to this dark dark world. Long Covid will not break my soul even if it smashes my body to a million pieces. My light is still bright!
Crying and Long COVID do not mix. I can't stop crying but as the tears fall my head throbs and my throat swells. The cough is worsening and the nausea kicks up. I have a lot of tears for all of us. I can't hold them back today. My words cannot encompass this pain.
#LongCovid
24 years ago my son was born. He brought my life grounding and meaning. It was mother's day and I became a mom. He has brought me countless blessings and plenty of worries. He is a kind and compassionate human who will be the first to help in any situation. Happy Birthday son!
So this happened again. I have had more mild tremors this week but just from having a bath my leg freaked out. All my muscles undulating. This is the stuff that is scaring me the most. The nerve and brain stuff. My heart stuff used to be the most scary. 😞
I have diligently and slowly with the help of my family have been explaining what Long Covid is and how each infection is Russian roulette. Interesting that many of them are aware of vaccine injury but not Long Covid. We have much work to do.
How can people help other people if they don't know how?
I am scared. This doctor actually said I have conversion disorder!!!!!!!!!!!!!!! Where are the advocates?! I need one. I cannot verbally express myself well at the moment and am getting taken advantage of.
Last night was awful. I had to change pajamas 4 freaking times from dysautonomia sweating. The pain in my muscles was unrelenting and my heart was racing and palpitating like I was running for my life. How am I still alive? My heart hasn't given up yet. Another day to fight on.
Long Covid is not a vaccine preventable disease. Just to make things very clear. The only way to not get Long Covid is to not get Covid. I keep seeing weird posts about Covid vaccines preventing disease. Nope. Sorry. Not true.
Very difficult test. It was really scary. My hr went to 266 and my BP dropped to 50/30. I have a new dx. Neurocardiogenic syncope with both vasodepressive and chronotropic components. I did lose consciousness.
#LongCovid
tests
I am taking a huge step by sharing me at my worst. Please be gentle. This is what I sound like in a flare-up. Long COVID is brutal. Who is this person? How did I become her so fast. This is not pretty. This is not sustainable.
Doctors, medical staff, and hospital cooperations need the information. This still needs to be addressed with HHS and CDC. They are still dropping the ball. And this ball will crush the world.
We are going to DC in March to demand the changes happen at this level.
Even in shift handoff they would not say Long COVID?! How do I expect to get proper care without a proper diagnosis. I am really fricken scared. How did we get here?!
New weird symptom LC
This morning I woke up smelling burnt toast. Made my partner check and see if someone burnt something. No one else smells it. It's very strong. No other smells can compete.
OXYGEN + BRAIN = HAPPY!
In my Long Covid experience my worst issue is my brain constantly feeling poisoned. This is because my sleep was being interrupted 28 times/hr +/- by a new onset central sleep apnea. I just did my sleep study and they experimented with CPAP settings. ❤️🩹
In
#LongCovid
my ability to rest and digest seems to be not working properly. It's part of the autonomic nervous system going haywire. My stomach is currently in inactive status. It's really uncomfortable and I have been trying everything.
Hey all. Just went to rheumatology. They still have no info about long covid. I told him about all the different research and all of my symptoms and new diagnosis. He has nothing for me and says he doesn't recommend experimenting with random meds.
Meet me tomorrow in front of the Lincoln Memorial at 1000am to stand together and demand treatment now! We are tired of wasted time! Speeches start at 1030. Well fitting masks/respirators required.
I hate this new me. F*ck this long covid and Vax injury bullsh*t. I want all the things back. Work, fun, exercise, driving, adventures, and sex. ALL OF IT BACK!!!!! I won't give up until they are returned to me unscathed.
I just did my questionnaire for the ME Stanford clinic. After answering all the screening questions I am impressed by how well they already know what's happening in my body. There were very few things I could say no to. Tomorrow is the big day. 18 months I waited for this.
I don't have any words. Godspeed.
This year is going to break so many kids and their families. My heart is broken. Public health is killing and maiming our population. 💔
After 4 infections, my daughter was finally due to have her [private] vaccine today, except she can’t because she has Covid19
We haven’t been anywhere. It was caught outside
It’s airborne, year round, flu
School attendance is mandatory.
#Vaccines
#SafeAirSchools
#Masks
You ready?!
102.3 fever from dysautonomia. Nausea.
Pain shooting through nerves.
Feeling concussed.
This is as good as it gets for me
I'm ready to fight for us no matter what.
Long Covid needs help now
Tomorrow may be worse
There are no treatments or cures
#ConfrontLongCovid
@Amanda_Stoel
Long Covid has destroyed my life and I am grown. Having this as a child is devastating and a mass public health failure. My three children have various long Covid issues. None are bedbound like me but it's interfering with a lot of their daily activities. You are awesome mama! 🫂
A great nurse can change everything. I was blessed to have one who listened, showed me compassion and helped ease my way in the hospital. I am home now and resting. Thank you all for your supportive words. I will be staying out of spaces for the time being and keeping stress low
If your friend or loved one has LC or ME please take an hour out of your week to help them or show support in some way. They need you. Please tell your other friends and loved ones about them also. It's important we are not forgotten. History repeats itself. Support
#LongCovid
Just slept 16 hours! What non teenager does that?! Do I feel rested? No. I feel hungover and anxious. Long Covid sucks the life right out of you. Mask up to avoid your next infection. You don't want what I have.
Having a moment. I really do not like what my body has become. I have no recourse. Freaking long Covid bs. I just want to throw things and scream but I just don't have the energy.
I am so angry. This is unacceptable. If LC isn't a problem enough to find a treatment and get acknowledged by MDs how the hell can you explain this?!!!!!!!
Denied life insurance due to
#longCOVID
. Pretty sure the insurance underwriters understand the risks of COVID better than public health and the general public.
Hi my LC peeps. I just got a new dx of serrated polyposis syndrome. This means rapidly growing polyps in my colon. This came from my LC. Please get screened and get checked out with a colonoscopy if you can. 🖤🖤🖤🖤❤️🩹❤️🩹❤️🩹❤️🩹❤️🩹❤️🩹❤️🩹
If you are in health care please take some time to reference Long Covid reading materials and learn about this condition. It is likely the fastest growing condition you need to know about. Please do your research. You make patients want to unalive themselves when you refuse
Hello,
Please read this! I am a nurse who has been disabled by Long COVID for almost 3 years. I have written many letters. These demands are vital and necessary for recovery for our nation and the world.
I just wrote the
@LongCovidAP
letter "Find a Cure For Long Covid" & told gov that Economist David Cutler says we need ≥$28 billion annually now! 11 demands articulate this in the letter.
Write your letter here:
Be Loud.
Take Power.
Fight Long Covid!
Most Nations are abandoning Covid patients.
Why?
It's been downgraded everywhere to say it's like the flu.
Why?
Many Nations have abandoned science.
Why?
What's happening?
Before the clock strikes 12 here on the West Coast I just want to tell everyone who I have met on here thank you for helping me find the courage to speak up this year. I hid out for the first 2 years of my illness. I didn't expect much when I came back on here in Feb.
I feel the clock ticking.
Not because I am 44.
Not because I am a woman.
I feel the clock ticking.
Long Covid has slowly been taking everything away.
What is my prognosis?
Nobody knows.
You don't want to watch this clock ticking away.
It's like a bomb counting down.
@haziethompson
From talking to family and friends I truly think familiarity plays a huge role. They think friends and family are safe and that's how they get infected almost every time. That's just the ones that take precautions. No need to count all the others. They just don't do anything.
How is it almost June of 2024 and we still have no education for doctors and medical workers regarding long Covid, the dangers of reinfection education for the public, and variants smoking through the public without them knowing?
Public health has failed all of us.
Frick everything. Life is just going on and I cannot be a part of it. Doctors just keep sending me around to other doctors. Family and friends slowly disappeared. My circle is so tiny now. I watch life going by while mine is screwed. Enjoy your frickin Superbowl.
#LongCovid
Holding in tears for weeks or months or years only delays the inevitable tidal wave of grief. It feels like my heart is hitting a brick wall and there is a flood of pain beginning to leak through the cracks.
#LongCovid
I am a little sick to my stomach about the state of things. My mom cannot believe there are actually people who don't believe in long COVID. I got trolled a bit yesterday and it really made her mad. My poor mom has watched me rise above poverty and then get kicked down by this🤢
So I just got home from the cardiologist. It was meh. A small bit of gaslighting occured but I said dude we worked together. You saw how active I was and one defining moment changed everything. I have nothing to gain with being ill. He agreed. Tilt table test this month.
#pwLC
Hyperadrenergic POTS afflicted friends, I need some advice. I am very episodic today. I need some POTS hacks. I am extremely nauseous, dizzy, my BP is high and I have over 45-50 point jumps in hr sit to stand. Lots of palpitations and I feel very anxious. It came on suddenly.
Hospital Acquired Infections need prevention
Say it slowly
Say it fast
Say it three times!
HAIs need prevention!!!!
Stop killing people at your hospital and take action wherever you are!!!
@AndrewHewat
@TheRMH
It's an absolute disgrace.
I stood in a regional ICU almost 2 weeks ago and watched a very close friend die, from a hospital acquired infection of covid.
He was infected by either a healthcare worker, another patient, or a visitor.
He was admitted on the 1st July and became
As much as I respect everyone's right to an opinion. Truth overrides your opinion and people who refuse to see the truth can do so at their own folly. News trash writers that put out opinion pieces on medical issues that have plenty of evidence suck. You know who you are.
@CDCDirector
I wish I could work. But unfortunately Covid flipped my life on its top. You are shirking your duties Mandy. Keeping people safe is part of your job that you seem to adore. All that could change for you with another infection. Please do some research.
Yup it's all hitting hard. Things just are not easy on any front anymore. I feel like such a failure. I have overcome every obstacle in my life except LC. Logically I know I am doing my best but the cycle of grief keeps repeating between anger and denial. Can't seem to shake it.
My view. Since 2021. Long Covid will limit you in ways you never imagined. Going from healthy to crawling to the toilet overnight in one fell swoop. Just a cold they say. Get me the heck out of here!
I am overwhelmed and stuck. I don't know if I should keep experimenting or if I should just give up and sleep until something more promising is discovered. I am just feeling like giving up the fight.
Still getting fevers. I have at least 5 out of 7 days of fevers a week. Today is a bit higher than normal. It's been almost three years and still the fevers. Fuck LC and VI. I need answers!
Very wise words. Remember if you get this and have Neuro problems there is no help. No doctors. No medicine. You will suffer as I do everyday. You will start to forget, have terrible headaches, your nerves will be assaulted. Please take precautions and protect your children. 😷
SARS2 can invade your brain.
All variants are neuroinvasive.
Neuroinvasion and anosmia are independent phenomena upon infection.
SARS2 can travel retrogradely and anterogradely along axons in neuron-epithelial networks.
Protect your brain.
The palpitations are so bad today. It's nonstop and makes me feel like throwing up. I have tried positioning water electrolytes and lots of rest. It's just unstoppable. Any ideas of things to do for it? I am at a loss.
#LongCovid
Hey all! This important forum is tomorrow!! Let's sign up and tune in to watch this amazing panel who are talking prevention! Support the efforts by all and we will break through the glass ceiling in DC. Knowledge=Power!
Dr Raven is more than qualified to tik tok this subject. We need reporters to respond to this!! They are covering up accurate info and allowing false info all the time. You can talk about drinking bleach but not real science?!
Hahaha y'all know me well. This is when I get creative :) I love a good challenge. But in the meantime, please make a big stink about this, this is a BIG DEAL.
Unfortunately getting admitted for stroke symptoms. No stroke on MRI though. What is happening to my speech?! And facial droop?! And right side weakness?! I hate Long Covid. Someone help me figure this out!!!!!!!!!
This means you are getting medical care by impacted people. They make a lot of mistakes due to cognition being affected. Are you getting the right care? Good care? Safe care? Compassionate care? I am not. This is widespread.
Day 6 of bedbound crash. I am at that point now where the guilt feelings start eating away at my mind. "Get up! Clean something! Cook something! Do some laundry! Get some steps in!" I just can't. I freaking can't. This is hell. Long Covid takes it all.