Olena ‘Olenka’ Sayko
@coco_chatel
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Ukrainian-American. Theater nerd/former arts administrator. Left-ish Libertarian-ish. Life on pause due to #LongCOVID . Wife to @max_e_rodriguez
White Plains, NY
Joined October 2008
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I’m now more than 7 weeks out since I tested positive for
#COVID
. I was vaccinated. I was boosted. I took Paxlovid starting *the day* I tested positive. I never got a Paxlovid rebound. And yet, I still ended up with
#LongCovid
. I had zero health issues before COVID.
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*whispers* it’s brain damage from covid
Does anyone else feel like they’re suffering from a weird sort of attention deficit disorder ever since the pandemic? I don’t know what it is but I can’t seem to find my mojo to get projects done like I used to. I can’t read books like I used to. It’s odd.
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You mean this entire time we could have been making N95 masks available to people and just…weren’t?
Tomorrow morning, one million N95 masks will be made available at state facilities.
400,000 will be distributed to New Yorkers at
@MTA
stations,
@PABusTerminal
,
@NYStateParks
&
@Javitscenter
.
600,000 will be available from
@NYSDHSES
stockpiles for local governments to pick up.
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The thing that’s so devastating to me is that Violet Affleck was clearly deeply impacted by her own experience with post-acute infectious syndromes and that’s why she masks so publicly and consistently. But her parents don’t seem to be doing the same, even when around her.
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Medical literature: “COVID is a vascular disease”
*large increase in cardiovascular events even in younger populations*
Doctors:
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Why am I sharing this deeply personal story on the internet? Because I took my eye off the ball for ONE weekend because there seemed to be no urgency in public health messaging in mainstream media. So I thought I was safe because I kept hearing “we have all these tools now!”
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And so many of these diagnoses are for conditions for whom research has been grossly underfunded and ignored. I’d argue it’s because dysautonomia, ME/CFS, and autoimmune issues overwhelmingly affect women whom the medical community loves to tell “It’s all in your head, toots.”
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I’ve been diagnosed with a form of
#dysautonomia
called
#POTS
as part of my care at
@MountSinaiNYC
’s Post-COVID Clinic. Basically my autonomic nervous system, which controls things like HR, blood pressure, etc. in your body aka things you don’t even think about is messed up.
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Translation: “I am over-invested in commercial real estate and this is really affecting my bottom line. I don’t care how many people die or become disabled because my money makes me feel good and I want as much of it as possible.”
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The American Left has a lot of soul-searching to do about the stratospheric levels of ableism they promote among their ranks. From the “the ship has sailed” nihilism that’s blissfully unaware that for some people aka the disabled and immunocompromised not getting sick is…
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As
@zeynep
wrote in the Times recently, we desperately need a Center for Post-Viral Illnesses so that research into causes, treatments, and cures can go into hyperdrive. /fin
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I took my eye off the ball for a couple weeks because I was stressed at work, and I’m paying for it. Despite making use of all these tools we have now! So don’t assume that it can’t happen to you. And take precautions to make sure they don’t happen to you. You only have one body.
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@jonfavs
With all due respect, 25 million Americans have Long COVID, which usually follows a mild acute phase. The most affected? Women, BIPOC, and LGBTQ. Damage from multiple infections is cumulative and increases risk of developing Long COVID, which has zero treatments. Educate yourself
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The system works! Our housekeeper tests with Lucira before coming to work. Today she tested positive for the flu so she’s staying home. And we’re still paying her for the day because it incentivizes her to be honest without punishing her for her health.
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My anxiety, which had been well-managed before COVID went through the roof and I had a month of sleepless nights because I would be jolted awake by random surges of adrenaline, which is common for POTSies.
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I also have moments where it feels like there’s burning under my skin. And some flavors of neuropathy in my arms, hands, and feet. I repeat, I had zero things wrong with my body before COVID. I drank like one glass of wine a month. I ate healthily. I worked out religiously.
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I really hope that
#LongCOVID
and other post-viral illnesses and autoimmune conditions are taken seriously and that research into causes, treatments, and cures speeds up enormously. I’m new to this journey but millions have been battling these issues for decades.
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Then yesterday, I bent down to put something in the garbage, and I lit’rally fainted because my BP dropped so low. Luckily my saint of a husband caught me as I started falling so I am physically unscathed and didn’t hit my head on the way down.
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For lots of the diagnoses that people are getting under the umbrella of
#LongCOVID
, there are no cures. There are only ways to manage symptoms and only to a certain degree. Some of available treatments work for some folks but not others.
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And I’m still early in my Long COVID journey. I might end up being semi-functional with the right symptoms management. Or I might end up as one of the Long COVID folks whose symptoms meet the diagnostic criteria for
#MECFS
and end up even less functional. Only time will tell.
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So my hubs and I went to the wedding of a good college friend in July 2022 and that’s where the COVID happened. You know what’s funny? That guy hasn’t reached out to us once in the year I’ve been sick. You really learn a lot about people in the toughest times.
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I cannot with that lady who’s like “I wanna get back to normal but my husband recovered from LC and is now hell bent on not getting sick again.” I cannot stress enough how much further away from normal your life will get if your spouse gets Long COVID again but doesn’t recover.
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So on July 9, 2022 I tested positive for COVID. My first infection which left me as one of the millions suffering with
#LongCOVID
. It’s been more than 2 years since I heard from the “good” friend at whose wedding I contracted the infection.
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Getting COVID in July 2022 & ending up with
#LongCOVID
doesn’t feel like freedom. Being stuck at home because I can’t get reinfected but we’ve decided to give up & permit unmitigated spread of
#COVID
doesn’t feel like freedom. How many more lives need to be marred by this virus?
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There’s no time to lose. To let the afflicted languish at decreased levels of functionality is not a long-term solution. Both for sentimental reasons and for economic ones. Estimates have 2-4 million people dropping out of the labor market because of
#LongCOVID
.
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@ZekeEmanuel
This is a really awkward way of announcing to the entire world that you hated your grandparents and your parents. My grandmother is 85 and every conversation with her is a *gift.* I’m sure as hell glad she didn’t die a decade ago.
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The fact that these tweets are from the same person just sends me.
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My controversial hot take for the day is that we let too many people become doctors.
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Have trouble finding great candidates to hire? Your next great Finance Manager might have
#LongCOVID
and is unable to work! I literally had to let a new job go that had been vacant for 6 months before I was hired because they couldn’t find suitable candidates!
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I wish that the team at
@LastWeekTonight
would dig into how
#MECFS
has been systematically ignored by the medical establishment despite the burden of the disease & how this choice has left our society unequipped to deal with the wave of disability brought on by
#LongCOVID
.
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Honestly, people who have had
#MECFS
for decades or
#LongCOVID
for years are officially the toughest motherfuckers out there. I’ve been sick with LC since last summer and it’s almost unbearable. You have to be so tough to endure this for years on end.
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At a time when vulnerable ppl need to continue masking because we don’t have the tools or the willingness to keep them safe, we’re just going to throw this BS out there?
Nice dog whistle using a Black woman w/ natural hair & a mask to denote someone “unattractive”,
@DailyMail
.
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Spending my first Christmas with
#LongCOVID
. It’s tough for me but even tougher for people who have been sick for much longer. Sending much love to the LC,
#MECFS
,
#POTS
, and
#MCAS
folks out there. May the year ahead bring fewer flares and more upright time for all of us. ❤️
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Pretty wild that the average life expectancy for someone with
#MECFS
is 55.9 years old - about two decades less than the average person - and the overwhelming response from the general public and the medical establishment is
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.
@jaketapper
is bae. “Mean is easy. Mean is lazy. Mean is self-satisfied and slothful. You know what takes effort? Being kind, being patient, being respectful, telling someone how you feel politely instead of just avoiding them for 6 weeks.”
.
@jaketapper
's commencement is excellent - noting that very few know the famous poem, "The road not taken," in full context, is completely different - but "we want it to be true"
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COVID is a labor issue. COVID is a class issue. Pass it the fuck on, numbnuts.
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Love that there is a drug that helps about 50% of MECFS patients and has helped some go from severe to being able to work full time again and the FDA failed to approve it so it’s impossible to get. Folks are commiting suicide, but sure, let bureaucracy and stagnation run amok.
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A week before getting sick with COVID, I took my last hike. Exercising to clear my head is a luxury only the old me could indulge in. It’s been 8 months for me. We don’t have the tools.
#LongCovidAwarenessDay
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I’m going to need people to internalize this: if you, essentially a non-expert in something complex, think of an obvious and easy solution to something, you are almost certainly missing something.
There’s a reason you don’t hear
#LongCOVID
researchers out here pushing this…
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“The scientists found that levels of a particular set of proteins that are crucial in controlling the growth and activity of immune system cells were almost undetectable among individuals who had long COVID.”
h/t
@Dakota_150
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The Right to disabled people: please shut the fuck up and disappear from society because we don’t care if you die.
The Left to disabled people: 🇵🇸 🇺🇦 🏳️🌈 🏳️⚧️ ❤️✨ please shut the fuck up and disappear from society because we don’t care if you die ✨ ❤️ 🏳️⚧️ 🏳️🌈 🇺🇦 🇵🇸
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Long COVID patients: “No shit, Sherlock.”
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the people being disproportionately impacted by Long COVID and being left to languish without care are neurodivergent, non-heterosexual, women, people of color, and working class folks, you really gotta ask who the fuck they’re even standing in solidarity with.
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@SorayaMcDonald
She was always too good for these people. The elegance. The critical thinking skills. The forward-looking nature of her activism. They hated her because she reminded them of how irrelevant they were becoming, and it ate them up inside.
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…still the most important medical priority not out of vanity but out of survival to the “harping about lack of COVID mitigation is privilege” that completely disregards that…
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I’m almost at two years. 24 months is a weird way to refer to as “months and months” and some are over 4 years sick. But go on girl, give us nothing.
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COVID is a fucking vascular disease. What’s so fucking puzzling?
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@_diatoma
I just can’t imagine NOT doing every damn thing possible to protect your own damn child from further harm…I know so many parents draw lines in the sand but it’s just inconceivable to me.
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I just really wish people would stop using porn star as some kind of derogatory gotcha. Sex work is work. Enough of this puritanical bullshit.
Stormy Daniels’ willingness to come forward helped shed a light on the level of corruption Trump was willing to engage in.
Jasmine Crockett calls Trump "a career criminal, with 34 felonies, two impeachments and one porn star to prove it."
#DNC
#jasminecrockett
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Everyone claiming that closing schools was unequivocally monstrous could not be reached for comment.
“Teen suicides plummeted in March 2020, when the COVID-19 pandemic began in the U.S... returning from online to in-person schooling was associated with a 12-to-18 percent increase teen suicides.”
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You don’t want to wear a mask? Fine. Don’t. But don’t expect others, especially disabled and immunocompromised, to go along with the mental gymnastics you have to perform to make yourself feel okay with the decision to participate in the ongoing mutation of a disabling pathogen.
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If people are so horrified by a princess missing from public life, wait until they learn about the millions missing from their lives due to infection-associated chronic illness. It’s a whopper, babes.
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Such a thoughtful piece on
#MECFS
.
Particularly resonant: “Pacing can be helpful but make no mistake, it isn’t a sustainable treatment. Patients need something more effective than simply doing nothing.”
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Lol, I used to hike up mountains for fun. That shit was a breeze compared to
#LongCOVID
. Stop equating easily overcoming illness with strength.
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@yesallcrops
@Northeastern
My grad school alma mater. What a disappointing response from that professor 💔
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@JoannaNoBanana
Keeping a set of cleaning supplies on each floor and relevant bathroom cleaning supplies in each bathroom so i don’t have to go get them when the mood/ability to carry task out strikes.
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“I got every shot they would give me, quickly took Paxlovid, & ended up with
#longCOVID
anyway. People do recover, but 85% of patients who have symptoms 2 months after COVID are still symptomatic after a year.” -
@erinmdurkin
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Today is my beautiful husband’s 35th birthday. We’ve been together since senior year of college, and been married for almost 5 years. In that time, I never imagined that life would lead us to where we are are now, with him taking care of me day-to-day…. 1/2
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So grateful for this man’s unselfish and fierce love. He takes care of me and protects me as we try to navigate this hostile world together. Wish everyone with a chronic illness had a partner like him. Don’t let them tell you that you can’t find love in a frat basement, gals.
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Protect your health while you have it because people, even people you think you’re close to, have a funny way of just fucking right off and leaving you in the dust the second you get sick.
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I cannot stress enough how much Moonshot is just a bunch of sick people working from our beds and then some of us who were well enough traveled to DC and got access to people in power because we didn’t get kicked out of the hearing. There isn’t some kind of nefarious plot here.
Disappointed does not even begin to cover this one.
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I wonder how many people will get
#LongCOVID
and lose all sense of freedom this July 4th. My husband got infected this weekend last year and passed the infection on to me. And I’ve never been the same.
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This Favreau thing is emblematic of the phenomenon of people wanting to appear to be good people rather than focusing on *actually* being good people. These people are incapable of accepting criticism because it shatters their perception of self as an unequivocally good person.
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Me literally the second there is an approved treatment for Long COVID
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Can’t believe that we have known about POTS for almost 100 years and we still don’t have anything better than salt, compression, and heart meds that barely do anything to address the underlying issues. 🤡
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Anyone who pressures you to do things that risk your health or mock you for taking steps to protect yourself doesn’t look at you as a distinct individual worth protecting. And they will not support you when you get sick with a disabling illness for which there are ZERO treatments
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The scandal in
#LongCOVID
is not that patients are seeking out unproven therapies. The scandal of LC is that if post-infection illness like
#MECFS
had been taken seriously and funded well decades ago, we likely wouldn’t have desperate patients seeking out these treatments today.
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Man, they’ll literally do anything other than treat Long COVID and other post-infection illnesses.
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I hope that whoever gets the Disability Engagement Director gig for the Harris/Walz campaign is mindful of Long COVID and engaging our community.
Disappointed but not surprised that the Biden campaign never did this and we’re now 90 days out and just hiring for this role, but I hope the right person gets this and ramps up quickly. If folks need advice from someone who’s done it, HMU.
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I just want people like
@jonfavs
who mock the thousands of thoughtful comments on
#PodSaveJon
to understand one thing: people with conditions like
#LongCOVID
and
#MECFS
carry a profound level of grief with them every single day.
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Decided to bring my one woman Long COVID advocacy show to Instagram & I’m getting so many comments of folks being shocked that there is a 1 in 10 chance of getting Long COVID. Love that there’s this huge public health issue that the MPH crowd thinks is beneath them to message abt
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I went to the ER a week after testing positive for COVID w/ signs of dysautonomia and was told it’s anxiety and to take ibuprofen if anything hurts. So doctors don’t actually know anything about recovering from viruses, but thanks for the paternalistic addition to the discourse
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Reminder that COVID and Long COVID are class issues. They are labor issues. You can’t separate them from the other ills that plague our society.
#PodSaveJon
After four years of reading peer reviewed research to try to get a handle on facts instead of propaganda, I really have too much to say about the
#PodSaveJon
situation for a single thread.
So, I want to talk about dads. 🧵
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@MeetThePress
@aliciaberri
Uh, so I got COVID just once, having had the primary vaccine series and a booster and having started Paxlovid ON THE FIRST DAY of testing positive. And now I have Long COVID. So I’m going to pass on this “get COVID twice a year” nonsense.
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We keep funding massive studies that demonstrate “Oh wow, Long COVID can last for years.” Can we also maybe, just maybe fund massive studies into treatments? Asking for me and 65 million of my closest friends whose bodies are also borked.
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I don’t know who needs to hear this but
#LongCOVID
is a dynamic disability. Some days are better than others. Some weeks I can shower 2-3 times a week and put on makeup. Some weeks I can’t get out of bed.
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@BerkeleyJr
POTS isn’t a heart condition. It’s a disorder of the autonomic nervous system. The tachycardia is a symptom of what is happening in the body (inability to induce orthostasis, low blood volume, excessive blood pooling due to poor vasoconstriction, and/or a hyperadregenic state)
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Sending so much love to the
#LongCOVID
and
#MECFS
communities today as the heaviness of the news continues to try to crush any hope we have remaining into dust. ❤️❤️❤️
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@GarrrettHarmon
Thanks for sharing that bright light of a tidbit. I’m certainly trying. They put me on Prozac and Gabapentin so the hanging in there has gotten much easier 😝. I’m trying not to catastrophize so much that I lose hope.
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@kkennedy86
Ugh this is giving me MCAS vibes, which I was diagnosed with after COVID. Hard enough making sense of it all at 34. Can’t imagine how awful it is to be a child and going through it. Sending your family strength.
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THIS IS WHY WE NEED MASKING IN PUBLIC PLACES DURING A FUCKING PANDEMIC.
I’m so scared for all the advocates who traveled to DC and risked reinfection just to fight this fight.
Fuck me.
Clear negatives until day 4.
I knew this wasn't PEM.
I can taste the metallic covid taste.
I have zero paxlovid, metformin, anything.
Its just me and covid again.
Lets hope this time I don't lose so hard.
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@bc_fox
Except the second one wasn’t produced by a sexual predator, which makes it much better
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Imagine what the likes of Ron Davis, Rob Phair, Maureen Hanson, Nancy Klimas, Akiko Iwasaki, David Putrino, Amy Proal, Bhupesh Prusty, and Carmen Scheibenbogen would do with a billion fucking dollars for Long COVID research.
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@LurkLethoceris
One person’s asymptomatic infection is another person’s Long COVID case waiting to happen. JFC.
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This is the reality of
#LongCOVID
. Despite access to the best doctors money can buy, I’m not getting better. At best, I’m treading water stuck in a deeply dysfunctional state while I wait for treatment breakthroughs.
#LongCovidAwarenessDay
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FYI for folks who weren’t able to watch the
#HELPLongCovid
hearing live: all senate hearings are recorded and you can watch the recordings on the Senate website! This hearing is already up and it *just* ended.
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“You talk about Long COVID a lot. It’s kind of a drag.”
If you think talking about LC is a drag, try living with it.
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When I first developed
#LongCOVID
and started learning about
#MECFS
and the history of neglect, I kept trying to convince myself in a million different ways that I only had
#POTS
. Because as debilitating as the latter can be, it felt like something I could learn to live with.
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@timspector
Hi, bud. Just so you know, diet doesn’t fix profound immune dysregulation and neuroimmune illnesses like MECFS and Long COVID, which are exploding due to the pandemic. Hope this helps.
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My favorite thing I’ve ever heard when going to doctors with my
#LongCOVID
was definitely a rheumatologist who shrugged and went “Well, you know, COVID does crazy things to the body. And we don’t really know how to treat a lot of it.”
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@jonfavs
People WITH long COVID are telling you this messaging is harmful. Is there advocacy off Twitter? Yes. But also consider that social media is one of the only ways housebound & bedbound folks have to connect with the world & share their stories when they are otherwise invisible.
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@CAMONGHNE
@SorayaMcDonald
This thing you wrote here - it robs Ukrainian people of agency. Ukrainian people have been fighting for independence for centuries. What is happening to them (including my family) right now isn’t because of some tug of war between western superpowers and Russia.
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I love that I got tested for a thing, have a thing, and insurance is denying me the antibiotic for the thing I have because it’s really expensive and there is not generic alternative. Health insurance is a scam.
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Explaining your chronic illnesses to that one person you only talk to every six months or so
#LongCOVID
#MECFS
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LOL. My mom is huffing so much hopium that’s it’s annoying. She literally just described me as young and healthy…when I have POTS, MCAS, and now, MECFS. Ma’am. Im a lot of things but healthy isn’t one of them…
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This is, and I’m putting it as diplomatically as I possibly can, utter horseshit.
The answer to poorly-done research is not to stop doing research. It’s to learn from mistakes and designing a research program that avoids those same pitfalls.
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Holland Taylor is telling y’all to mask so you better fucking do it. Reminder, you can develop Long COVID, a debilitating chronic illness with ZERO FDA-approved treatments, upon reinfection even if you did fine previously!
Folks- in New York, covid is on the uptick. Please wear masks in the theatre and on the subway. Seriously.
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The idea that “I don’t know anyone with
#LongCOVID
therefore it must be rare” talking point is such trash. Just today, ANOTHER person that I know who has been off social media for three years logged back on, saw my posts about LC and let me know, she’s suffering too.
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