Thread by @ItsAngInLA

One year ago today, I went for a run, like I did most mornings. I came back, made oatmeal w lots of cinnamon. My husband walked into the kitchen and said he could smell my breakfast from the bedroom.
I could not smell it.
That was my first morning w COVID19. #1Year1Virus

It started with some post nasal drip, some aches, skin sensitivity. I was slightly chilled but felt warm to the touch. I was nervous but heartened - no cough! This must be a cold. T said his throat felt funny the day before and it was a little more bothersome today.

The next day, the second Saturday of California’s Shelter in Place order, I got on my first Zoom with friends for a mimosa brunch. This was one of my only zoom hangouts this entire pandemic.
We poured champagne and I realized I was getting short of breath talking.

I said “guys I think I have COVID….”
Everyone laughed. I felt a little silly.
“Guys, I feel like I can’t breathe. I think I have COVID!”
“You don’t have COVID!”
I stop talking. I feel a little warm but assume it’s embarrassment & champagne.

Over the next 24 hours I became noticeably feverish, and my spouse did too. We both developed diarrhea, and his throat became incredibly sore as my shortness of breath increased.

I have asthma. I was… worried.

I realized I should probably check in with my doc. Still not knowing whether it was COVID, I didn’t want to go in person, even to an urgent care clinic, in case I DIDN’T have COVID. My new doc on the Eastside of LA wasn’t offering telemed yet. But my old doc on the westside was.

I will never forget that telemed appointment.
“Well that sounds like COVID! I could probably find you a test but

it won’t change the course of your care.”

Over the next several days my shortness of breath increased and my inhaler stopped working. The shortness of breath was unlike anything I’d experienced as an asthmatic, even w a flu that turned into terrible pneumonia a few years prior.

I got stabby headaches & my fever stayed low but constant. I’d had worse flus than this! I was fine! I tried desperately to find an oximeter - it took several days. Then I tried desperately to find a nebulizer for my asthma meds. Nowhere. I started to panic about Day 17.

I checked in with an urgent care doctor via telemed (still hard to find). She said my shortness of breath sounded like pneumonia (I’d had pneumonia - it didn’t feel like that). I asked for a nebulizer prescription - I’d had those before w pneumonia & they worked.

She said they weren’t doing nebulizer scripts bc they didn’t want to aerosolize the virus (LOL) and contribute to family infections. I was already so brain foggy I didn’t think to tell her my spouse was already sick (but back to normal by then).

Instead she gave me prednisone.

And that was when all hell broke loose. My sense of smell that had begun to return went away again. I had a fever every day I was on prednisone (bad! Too brain fogged to realize it was BAD to have a fever on steroids).

This is when the heart stuff started.

My heart began beating out of my chest for no reason. It fluttered, my chest and heart would spasm & send shocks up to my throat. My SOB eased as my heart beat out of control. I stopped sleeping. I developed severe migraines unlike any I’d had before.

I developed an obvious tremor in my hand. Telemed visit a neurologist: “we know Covid can infect the nervous system. The tremor is only a problem if it lasts 3 months or more. Call me then.” 😳

I was so nauseous I could barely eat. My startle reflexes were out of control. I was having what felt like seizures at night. Nerve tics and muscle jerks. I once lost vision in my right eye for a minute. I felt like I had to manually breathe every time I dozed off & startled up.

I drug myself to my doc’s then to a cardiologist’s office for EKGs and told I was fine. I wore a 24 hour heart monitor. Told it was fine (spoiler - a recent review of my records indicates my heart was v NOT fine).

I spent entire nights up late, googling my symptoms, trying desperately not to panic, but fully panicking because my body was so beyond any place I’d been physically and no one could tell me what was wrong.
Then I found @fi_lowenstein’s Op Ed

and I joined @itsbodypolitic - where I found my people. My sick, scared, but unrelenting people. of course @fi_lowenstein
who asked me quickly to be a volunteer mod. @ahandvanish @GinaAssaf sharing research articles about dysauotnomia & chatter about surveys.

and then there was @AlisonSbrana - who, like a revelation, opened the doors to diagnoses I had suspected for months (dysautonomia, MCAS) but thought were too rare.

She reached deep into her networks to find me the names of the clinicians I am seeing today (who were of course booked 6 months out bc we are SO ill prepared to deal w patients w post infectious chronic illnesses).

I was never hospitalized, but I should have been. I was discharged from ERs even with blood obviously and clinically verified so clotted it was literally off the charts & abnormal EKGs bc I didn’t have a + test (& 4 failed antibody tests).

I was gaslit and told this was anxiety by countless doctors. One neurologist believed I had POTS but was out of network & wanted $$$ for the tests to put it in my chart. She also said it sounded like I had brain inflammation. 😶I couldn’t afford to follow up

I was discharged from an ER after what I now believe to be a Transient Ischemic Attack (mini stroke) bc I had been & discharged the day before. I was left unmonitored in a room w my husband for hours. I have never showed this video.

I lost my ability to speak for several minutes. I managed to communicate to my husband to film me. I was scared I was going to die & have no proof of my condition bc literally no nurse or doc would see me. They were convinced I was having a panic attack.

You can see the right side of my face is drooping and I’m slurring. I was discharged hours later after I got an MRI I wouldn’t leave without. That MRI was normal. A neurologist later said my neck images were too blurry to read.

Which is interesting considering I had whiplash for weeks after this (I couldn’t move my head AT ALL), have occpital neuralgia, and still experience periodic numbness in my lips and tongue.

I later found the doctor who told the obviously frightened nurses to hold me in this “hot” room (for psych cases) here on twitter w some tweets that indicate he’s a believer in the sexist concept of mass hysteria. I won’t tag him here.

For the record, this was my DDimer drawn by this doctor’s colleague 24 hours prior to the video being taken. That first doctor discharged me w “SOB” BEFORE even reading my DDimer labs (which I insisted on).

So #medtwitter you tell me if this DDimer is within the range of “stress” (esp bc I was on birth control pills!!!) even with my lack of a + COVID test. Tell me if it’s also concerning within 24 hours of having stroke-like symptoms.

After that I rode out new onset near-anaphylaxis from my bedroom for a couple of weeks (hello Mast Cell Activation Syndrome!). I couldn’t move my neck, or sit upright without nauseating vertigo, I couldn’t form sentences or think straight.

This was about 8 weeks into my infection and 6 weeks into a planned vacation between jobs. I was supposed to start my new job on Monday. I called w an excuse about blood pressure meds to delay my start by 1 week...

And the rest of the summer is a blur. I did a lot of press that I don’t really remember. I got started with my new job with the mental capacity of a 10 year old (and the working memory of a 90 year old). My executive functioning was SHOT.

I could not have done any of this without @itsbodypolitic - it was the only space during all of this where I felt safe. We didn’t have answers, but we had BELIEF IN EACH OTHER. I was suicidal after that ER visit.

At that point even my spouse was starting to doubt my condition. But never my friends in the support group. I would dissociate most days during the summer (why I can’t remember most of it) but I have clear memories of staying up late at night messaging people on the Slack group.

A few weeks after those harrowing ER visits (and new onset anaphylaxis - so I just stopped eating!) I re-established care w my doc on the Eastside of LA, she immediately recognized my MCAS and dysautonomia symptoms

(cw: suicide)
She started me on a protocol while I waited the 6 months to see the MCAS experts noted by @AlisonSbrana - My doc, her belief in my symptoms, her belief in my COVID infection, saved me from killing myself this summer.

One year later, I’m still dealing with doctors who don’t believe I had COVID, don’t believe in or understand the devestating vascular or neurological impacts that are ongoing, don’t understand MCAS or dysautonomia.

But I fucking SURVIVED. It feels odd to say I’m lucky to be alive. I don’t have any survivor’s guilt. I’ve been through trauma before. I have a history of PTSD. I know survival for any of us has always been luck.

What I do have guilt over is how comparatively well I’m doing, despite months of no care when I was severely ill. There are so many #LongCovid patients who can’t walk their dogs or do yoga (even if I can’t run). Who can’t leave their beds. Who can’t work 60+ hours a week.

So while I am tired AF, burned out AF, and still sick and disabled by many measures, I put on that armor and I slay dragons and clear brush and organize my people because I can’t stand the thought of someone else being gaslit the way I was. What if it kills them?

And we know that it DOES kill people who look like me (Latinas). It DOES kill Black people, women, queer people, fat people, disabled people. The medical system KILLS in the same breath that it heals bc it’s built on a foundation of lethal white male capitalism.

A foundation that was designed to uplift men & their binaries & their greed. Covid did not create these inequities we see, but COVID put it in a binary language that white men can not argue with, though they continue to try.

In sum

Believe Women
Believe BIPOC
Believe Patients

#LongCovid #NEISVoid #1year1virus

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