(un)Diagnosed: Day 215 (Seven Months) COVID Long Hauling Along

A pixelated portrait of Patricia laying flat on the couch in a nest of blankets and pillows. She wears a sweater and a t-shirt stating "I'm broken/I'm OK." The image is all shades of blue, and comprised of dots of varying sizes..
“I’m perfect the way I am, and a little broken, too.” Dan Nichols.

Today it’s been roughly a week since I was able to walk around the block I live on. That’s in part because I’ve been doing other things. Conference presentations, physical therapy, meetings, research, too much. My current tentative diagnosis is viral post-COVID dysautonomia. Briefly, dysautonomia means that all those things your body is supposed to do without you having to think about it? They get messed up. Like this.

Sometimes my body forgets to breathe, and I realize it when I get dizzy or the computer grays out. Sometimes I’m walking towards something, but veer sideways instead. My heart might decide to go extra slow (bradycardia) or extra fast (tachycardia), and it doesn’t have anything to do with how active I am or how fast I’m moving. I feel too cold, or too hot. People think fevers with COVID, but for me it’s been more chills. When I was actively infected, my body temperature tended to be around 93F, instead of the 104F they warned people about. Yesterday it was 96.8F. This morning it’s 94.6F. I don’t just feel cold, I am cold.

Now, this probably sounds weird to folk whose bodies are behaving and doing what they should, but it’s actually not unusual for folk in the long COVID community, a.k.a. COVID long haulers. COVID is weird, and it can damage basically any part of the body. That damage is showing up in a lot of different ways for different people, but among the leading trends are new diagnoses of dysautonomia and myalgic encephalitis/chronic fatigue syndrome (ME/CFS). Along with these, people are showing up with new issues that look like mast cell activation syndrome (MCAS) and postural orthostatic tachycardia syndrome (POTS), heart issues, lung issues, kidney problems, diabetes, sleep problems, brain fog, memory loss, skills losses, and neuro issues. Some of my long COVID friends have had to get pacemakers. And we aren’t even hardly talking yet about things like PTSD or depression.

Weird, WEIRD things happen. I read about a guy who lived in another country, married a woman there, had a family, got COVID, and forgot how to speak the language. He can’t talk to his wife anymore. That’s when I realized that I’ve lost some of my French. I used to be fairly fluent, and I can still read it, but when I try to speak it, it feels like I tugged on a rope and it broke. There’s just nothing there, but it feels like there might be. I don’t use my French often anymore, so I hadn’t missed it, until I tried.

The long hauler groups are full of people with weird things happening trying to figure out if this is still part of their COVID experience, or is it something else wrong that they are attributing to COVID? Women on the cusp of menopause tip over and their periods just stop. Women in their 30s show signs of early menopause. Women past menopause find their periods start again. Women who always had normal menstrual cycles find their schedule is out of whack, and their periods are much lighter or heavier, or both, or their period starts and doesn’t stop. For weeks. There’s lots of talk about hair falling out, or turning white, or color changing. Sweating when it isn’t needed, or not sweating when you’d expect it. New onset of diabetes. Clusters of symptoms from the infection that just don’t seem to ever stop.

So. What do we do? I mean, how many folk have had COVID now? And how many of those will end up with some version of LongCovid? Estimates range from a third to 10%, but clearly it is going to be a LOT of people. If the USA put 10% of its total workforce on disability for long term impacts of COVID, we’d be in a world of hurt. Can insurance cope with the costs of rehabilitation? Does rehab even work?

Lucky for us, the UK is way ahead of us here. They were hit with COVID before most of the USA, and they have socialized healthcare, so they are on top of this, figuring out what works. The National Health Service already has a website for COVID long haulers: Your COVID Recovery. They have a handout for patients, and planning documents for healthcare organizations that include a list of services these patients are needing (so far). One thing that seems to prevalent is a kind of neuro-rehabilitation. Basically, over-simplifying, this means we are trying to remind our nerves how they are supposed to work, and sort of jolly them along with, “Good! You can do it! That’s right, you’re getting it!”

Last time I saw my doc, they told me that my knowledge of LongCovid is way ahead of theirs. I am (surprise) really paying a lot of attention to this (see Twitter thread). My doc can support me by ordering tests and requesting therapy, but the expertise just isn’t here yet for what to do for folk like me. I’m passing along resources I find, being highly selective and focusing on clinical care. We talk about them, and decide what seems most reasonable for me and my cluster of weirdnesses. I try to negotiate insurance coverage for whatever, and maybe we try it, maybe we don’t. Right now, neuro-rehab is the name of the game, and I started PT last week. If you’re curious about what a day-in-the-life might look like for this, here’s an excerpt of my symptom log from last weekend, the day after my first PT visit, lightly edited for typos and spelling.


Woke up, showered.
Resting Pulse: ranged from 45-67bpm
Oxygen levels ranged between 90-100
Tired early. Had trouble watching the morning virtual events. Couldn’t sit up. Had to lay down by 10:15am
Left hand tremors
Chest pain – brief
Palpitations
Felt outside of the world
Cold, lots of blankets (4+dog)
Debilitating fatigue
Couldn’t hold phone or open eyes, but wasn’t sleepy
Arms weak
Slurred speech
Cold feet. Hands were warm
Tinnitus ringing in both ears
Later it felt like the tinnitus was in my brain instead of my ears.
Brain fog
Voice froggy/staccato-y all day
Came out of brain fog about noon, could hold phone. Feet still cold
Cold spreading up legs. Kind of burning cold.
Sleepy again by 1pm. Kiddo made me eat an omelette
Took blankets off at 2pm, put them right back on. At 2:30 took off top 3 blankets. At 3:30 took off last blanket. 3:40 back on. Checked pulse/ox. Ox was 92. No wonder I feel crummy. Up to 98 some minutes later, but dagnabbit, body!
Right leg fizzing .
More naps.
5:30pm. I think I can stand up soon. Sit up.
5:45pm. Sat up. Drank morning coffee
6:56pm came out of tunnel vision, and again at 6:59. Evidently layers of tunnel vision
Tinnitus moved back to left ear
A few brief hot flashes, none long enough to take my sweater off
7:38 stood up and moved. Discovered skin peeling in new spot
Mild pressure in head
Nighttime: firefeet, burning scalp , sweats.

Yeah. Fun times. Today is the end of the 7th month since I caught COVID.

Undiagnosed (No Longer): Day 185 (Six MONTHS)

Screenshot: Patient Portal

Today is officially six full months since I first got COVID. I haven’t posted here since day 101 of this journey. I am really sorry that my blog has turned into nothing but #LongCovid updates, but I just am doing everything I can to get through my projects and meetings with work, and blogging is extra. All the tech goodies will come back, some day. I’m still collecting them!

My doctors all insist that I had COVID and that we just missed the window of opportunity for testing. I get messages from my primary care doctor with the subject line: “COVID Long Hauler.” That’s actually pretty validating. This has been a long, loooong roller coaster ride, getting better, crashing, starting over. Currently, the best guess we have is viral post-COVID dysautonomia, and this is functioning as diagnosis for the purpose of requesting therapy. My doc did some research, talked with other docs, and had some good ideas. Insurance won’t cover them all, so I’m starting with what insurance will cover: physical therapy.

The past week has been better than I’ve been in a long time. I had 3-4 days where I was able to work, make food, and actually do a tiny bit of household chores. Then, of course, there were 3-4 days where I had a crash, but was able to crash and get back up, even if I wasn’t able to do everything I wanted to get done. But just two weeks ago … well, this is my Facebook post from then.


AUGUST 30, 2020 (Day 170)

DS: Are you SURE you don’t have COVID anymore?
Me: I test negative.
DS: I know. But are you SURE you don’t have it right now? Are you SURE sure?

I’m guessing that some of my friends here probably have dysautonomia, but I’m new to this. It’s part of whatever COVID did to my body, and evidently most of what I’ve been thinking of as relapses has actually been this new damage to my body asserting itself, in unpredictable ways, at unpredictable times. Sometimes my heart goes too slow, sometimes too fast. Sometimes I can’t catch my breath, but my oxygenation levels are fine. Sometimes my oxygenation levels are not so great, but I feel fine. Sometimes I feel like I have a fever, sometimes I chill. My balance is rotten. Sometimes I have a sense of pressure in my head, usually (but not always) with brain fog or headache. When I tried going to the grocery store on the bus with my son a couple weeks back, the pressure in my head lasted for a week and a half. Don’t worry, they’ve done tests, everything seems normal. They don’t know what’s causing it, but that sense of pressure in your head is reported by a lot of the COVID long haulers. So, normal for us, I guess. Yay?

This morning, my hands were shaking so bad I couldn’t type. When it kept going on, I decided to walk the dog with my son. I made it about an eighth of a block before my lack of balance made it clear that walking was going to be a challenge today. I don’t know how I’ll ever get better if I can’t walk, tho, so I held onto my son’s arm, and kept going. When we got home, my son ordered me to the couch, and I laid down.

After about a half hour I started chilling, and this was chilling like when the COVID was bad. I knew the temp outside was in the 70s, and I was on the couch by an open window. It wasn’t that cold. I finally asked my son to help me cover up. He came over and checked how I felt, temperature-wise. He says my hands were like ice. They were so cold it scared him. That’s why he was asking if I was sick again.

He covered me up with two blankets. Folded them double. At my request, added another. At my further request, he added two more over my chest. I ended up with six layers over my legs, and eight over my chest and arms. After an hour, I felt warm-ish to me, normal to him. He felt blazing hot to me, which is … the usual 98.6, you know?

I had a lot of plans for things I was going to get done this weekend.

Undiagnosed, Day 101

“[T]o be a nerd node of trust is that you are not pretending to expertise you don’t have, but you’re helping your immediate network – your friends and your family – make sense of and interpret this glut of information they’re receiving.” How To Talk About The Coronavirus With Friends And Family. https://www.npr.org/transcripts/826612240

The last time I posted about my COVID-19-maybe experiences was April 3. At that time I was, at least in public, calling it “good” and “done.” Anyway, that was the hope. I thought it was over, because the fever stopped. It wasn’t. If you had been tracking those early posts you may have noticed the posts were getting farther and farther apart. While, according to the guidelines and recommendations at that time, I should have been past the worst (which is what I said), in reality, the worst was just beginning. I’m one of the long haul folk who probably had it but doesn’t test positive.

WHAT HAPPENED

When I talked with the clinic on the phone, the first few days I was sick, they told me this was probably COVID, but a mild case; to call if the fever spiked or I had trouble breathing. None of that happened during the first few weeks. They didn’t mention severe chills, fatigue, purple fingernails, brain fog. They didn’t mention the excruciating fatigue, loss of balance. At Day 30, I still couldn’t walk around the block, and I was starting to think that without the fevers, I’d never be warm again.

There were so many things I didn’t mention in the early posts, in part because they didn’t fit the profile and I was trying to provide relevant helpful information, in part because I didn’t have the energy for that much detail, and in part because I didn’t want to scare people. I did jot notes, but there were times I was too exhausted to even do that. I would try to remember them for later, but the brain fog could be incredibly thick. I didn’t always make a lot of sense, and between that and my tendency to fall into the wall while trying to walk, my son was pretty scared. He ended up in the role of being my caregiver throughout this, my hero.

Today is day 101 or 102, depending on how you count, and whether you count from zero or one for the first day, whether you start with the tickle in my throat the day before the fevers. I had hoped to get this done for day 100, but there are good days and bad days while I’m recovering, and yesterday was exhausting. When I stopped writing about my COVID experience the real reason was that I was simply too exhausted to write. I’m not going to try to describe what happened during the whole several months past, but there were a few events that stick out.

  • Day 40: That time I did my first load of laundry since getting sick, and ended up in the Emergency Room overnight because I couldn’t breathe, and had a sense of pressure in my head. And took 2+ weeks to recover.
  • ~Day 50: When I could smell the coffee, and it smelled so amazing. Around the same time, I remember the first time my toes stopped hurting, and the sense of relief and relaxation as I fell asleep without pain.
  • Day 66: That time I couldn’t sleep because my throat closed each time I started to fall asleep. Which turned out to be a new food allergy. That could be a post all by itself.
  • Day 84: That first time time I went grocery shopping, and it took four days for me to recover enough to put the groceries away.
  • Day 97: That second time I went grocery shopping, got about 5% of what I picked up the first time, and it took me two days to recover enough to put the groceries away.

THINGS I DIDN’T MENTION BEFORE

About a month out, I read an article about how much we are learning and have learned from the diaries people kept during the 1918 pandemic. Since I had stopped blogging about it by then, I started jotting notes of things I thought might possibly relevant, even though, at that point, they weren’t considered to be part of the profile.

What the cold felt like. How my toes ached and ached and ached. How my toenails were white banded with purple and blue. Sometimes my fingernails, too. I could be covered with a pile of blankets a foot deep, and still be shaking from the chills. I would be in online meetings for work, with 2 or three layers of blankets out of sight on my lap, wearing five layers of tops, and wrapped in a winter scarf and a blanket over my shoulders. Meanwhile, my son was running around the house in shorts and a t-shirt. I was always a little bit warmer in the morning, and the cold increased as the day moved along.

The balance issues were significant, and still come back when I overdo things. I couldn’t stand without help. I couldn’t walk without help. I was so dizzy I would run into door frames and walls as I walked past. It wasn’t unusual to hit the wall hard enough to leave a lump on my head and bruises. Of course, I couldn’t cook, so we ate what my son could cook. Omelets on rice. Spaghetti. Handfuls of salted peanuts. Boiled chicken thighs.

I craved boiled chicken thighs most of the time I was sick. I’d eat the chicken and drink the broth. The only thing I could taste was salt, so everything I ate was heavily salted. Sometimes the salt burned my tongue. After I started to get better, my cravings changed. For a month now, I have been craving steak, bloody. Liver. Green salads. Grapefruit. Given that I was a vegetarian most of my life, and have never been much of a meat eater, this is pretty peculiar. I keep thinking I’ll stop craving meat, but it hasn’t happened yet.

At the peak of the illness, my teeth were completely gross and webbed, even if it was only a couple hours since I’d brushed them. I had a series of skin infections. Sometimes my skin was bright red or bright pink, and shiny. My hair, nails, and cuticles were growing at a ridiculous rate. It was weird that my nails irritated my skin. If I let my hands relax, the fingers would curl over and touch my palms, and then my palms would start to itch, badly. It reminded me of when I was a teenager and discovered I had metal allergies and reacted to necklace chains. That bothered me badly for several weeks, grew milder, and stopped about two weeks ago.

I had CRPS a few years back, following an injury. CRPS is complex regional pain syndrome. I was treated for it at that time, and it mostly but not completely resolved. That’s a different story. Anyway, while I was sick, the CRPS flared up again, repeatedly. Often it was worse at night. Sometimes it would come on suddenly, others it just tingled and felt weird in the affected locations. It hasn’t bothered me for a week, so I’m hopeful that it is started to calm down again. I also started getting lots of headaches and migraine-types of events. I went through a couple weeks of feeling like my feet were burning, also known as “fire feet”, keeping me awake at night. So, … neuro stuff.

And cardiac stuff. My resting pulse rate ranges from 10-20 beats per minute slower. My pulse when I am walking slowly is 2-3 times higher than my new resting pulse rate. Fun stuff. New veins became visible in my hands. I took pictures because it seemed weird, but they’ve gotten smaller again.

It was really interesting that when I was in the ER, the x-ray showed residual infection and scarring in the lungs, and some possible heart damage, but up until that point I hadn’t had a sense of having pneumonia or trouble breathing. I didn’t start having trouble breathing or the “COVID couch” until after I started to get better. When I did, those symptoms then lasted for another month or so. Air hunger is a real thing.

CLOSING THOUGHTS

Day 101. When I was finally tested for COVID19 it was over a month into the journey. The tests came back negative. When I was tested for antibodies, it was three months in. The test came back negative. But the doctor in the ER, and the other doctors I’ve seen all say they don’t know what else this could be. Some people get a positive test, but no antibodies. Some the reverse. Some neither. Some both. What does it mean? Right now, we just don’t know.

I watched a video last week, not by a doctor or medical expert, but by another survivor like me. He had some thoughts that seem to make sense about some of the trends in the research, and why folk are testing negative. It’s interesting, and I hope some folk with more medical and statistical analysis expertise than me will expand or explain why what he says does or does not work.

COVID-19 Antibodies: Why is Everyone Testing Negative? – NEW DATA https://www.youtube.com/watch?feature=youtu.be&v=AuKAg52mz4s

Anti-Racism Matters in Graphic Medicine, Too

Comics by African American Creators

There have been a lot of posts coming out with anti-racism reading lists, even some for comics and graphic novels. With the push this week to support #BlackPublishingPower and #BlackoutBestsellerList, I’d been thinking it would be good to have something for Graphic Medicine folk along the same lines.

Then this morning, I saw the Nib’s newest, In/Vulnerable: Zenobia – Largo, MD. This is one part in an amazing series the Nib is doing in partnership with Reveal from The Center for Investigative Reporting on how inequities and disparities are impacting health outcomes and experiences in the COVID-19 pandemic. Sure sounds like graphic medicine to me, doesn’t it? I hope they publish this in book form so I can get a copy for our library.

I read Zenobia’s story about her daughter with cerebral palsy, who worked in a grocery store. A grocery store that didn’t provide PPE for their staff. And her daughter died of COVID-19. My son grew up with what was called special needs, also, and, like Zenobia’s daughter, Leilani, he works in a grocery store. Not a big one like Giant Food, but a small coop in an upscale community. It’s really different. Staff have and use PPE, my son is sanitizing carts and baskets and places people touch things. Reading In/Vulnerable this morning was one of those moments. It just hit me, and I started crying, and had trouble stopping. I probably could use a mental health day, I guess, and you know what? That’s an option for me. That’s available to me. And somehow that doesn’t make this any better. My son wanted me to go watch cat videos, and I said, no, let me try to do something that might help instead. Even if it isn’t enough, ever, and can’t possibly be.

I’ve done posts before on social justice in comics, so you can start here: 45 Graphic Memoirs and Graphic Novels on Social Justice Themes. Right now, I’m still working from home (more privilege), and most of the books I have that would count for this are in the office, which hopefully explains the photo at the opening of this post. Because I blur social justice issues and the boundaries of graphic medicine, this might be a little loosely defined, but here are some titles I’d like to share with you at this time, in this context.


A COMIC ANTHOLOGY

Book: APB: Artists against Police Brutality, A Comic Book Anthology

I’ve been collecting comic anthologies for a research project, and let me tell you, this one is not well enough known. Go. Buy it. Read it.


BEN PASSMORE

Book: Your Black Friend, and Other Strangers

About prejudice, stigma, stereotyping, privilege, and sort of a core in the anti-racism comics canon.

Book 2: Sports is Hell

Believe it or not, this one is actually about rioting. Fancy that.


EZRA CLAYTAN DANIELS

Book: Upgrade Soul

An exploration of identity, mortality, and disability through a science fiction lens.

Book 2: Are You at Risk for Empathy Myopia?

Free online, but for sale if you want a print copy.


JOEL CHRISTIAN GILL

Book: Fights: One Boy’s Triumph Over Violence

A graphic memoir examining violence in the life of African American youth.


RUPERT KINNARD

Book: B.B. and the Diva

A brave outrageous early work of fiction LGBT superheroes, of a sort.


LEROY MOORE

Book: Krip Hop Nation

Exploring and honoring the power of spoken language arts and music through a lens of disability activism.


SAMI BRICE

Book: Waiting

A rather peculiar exploration of the concept of waiting in our lives.


TEE FRANKLIN

Book: Bingo Love

What does it mean to love someone when society says you aren’t allowed to be with them? What does it mean to love someone when you are finally allowed to be with them? What does it mean to love someone through aging, loss, and beyond?


TONY MEDINA

Book: I Am Alfonso Jones

Powerful. I can’t try to explain it without choking up. Go read the publisher’s description.


WHIT TAYLOR

Book: Madtown High

I’d recommend her book Ghost, except it isn’t available. This is another good one, graphic memoir exploring teen life.

See also:
New Podcast: Reconciling the Public and Private in Health Comics with Whit Taylor


OTHER BOOKS IN THE PHOTO

These might not count as graphic medicine, but they are by Black creators.

Bayou, by Jeremy Love (a daughter vows to save her father from being lynched)

Captain America: Truth by Robert Morales and Kyle Baker.


MORE

FYI, the Graphic Medicine Confab series starts TONIGHT (yay, Kriota!), and the presenter for the June 30th session is Joel Christian Gill, mentioned above. And there is a Comics as Resistance with Bianca Xunise event happening on Friday (which I know about thanks to Whit Taylor retweeting Radiator Comics).

15 Black Comics Artists Whose Work You Need to Read

Black Lives Matter Comics Reading Lists: BCALA and the ALA Graphic Novels and Comics Round Table: Black Lives Matter Reading List

Kugali Comics (Africa/Kenya)

We Need Diverse Comics

Comic Creators of Color

Black Lives Matter Comics: The systemic racism of policing in comics

Undiagnosed, Day 17-20

UPDATE, MARCH 30-31, APRIL 1-2, DAYS 17-20

I’ve been making good progress, I think. I attended a wonderful online conference during the weekend, but needed time off afterwards. Sunday I tried to take a proper walk, which you already heard about, but I think I was still a tad mentally foggy and should have made that post for two days. But Tuesday, I walked around the block feeling as if I’d been let off a leash. I felt GLORIOUS. Better than 100%! It was wonderful, and it lasted, oh, about six hours. LOL!

I haven’t had any actually CLINICAL symptoms in days now, and have returned to my usual flu-season regime of one ColdEeze a day. No more sore throats, no more tight chest, no fever, no cough, no night sweats, no dizziness, no more sense of fighting through a fog. I feel more myself during the days, but I find I’m starting to yawn a lot later in the day, and I hit a wall by the end of the normal work day. So, not quite 100%. I told my boss I was 98%, but honestly, that’s only as long as I sit still and don’t move. I’m much more comfortable in my house and body than I was a week ago. When I hit a wall, though, I start chilling again.

I had a fun moment the first day I actually felt normal for a bit. I found the CDC’s Coronavirus Self-Checker. Part of the reason I wasn’t tested was because I didn’t have the scarier respiratory symptoms. I was told to self-quarantine with the assumption that I probably have it, and to contact them if I got worse. But “worse” was defined as the respiratory symptoms getting worse or the fever getting really high, and neither of those happened. What happened for me was extreme chilling, with sticky cold skin, weakness, fatigue, dizziness, brain fog. My son had to help me stand up if I wanted to go the bathroom. He had to make all the food. He had to hold my cup of hot drink if I was trying to move. I couldn’t walk and hold the cup. My fingers were so cold they were stiff, and this was indoors with my son running around in his t-shirt and me wearing five layers and wrapped in a blanket. I couldn’t walk without holding onto him. My toes ached from the cold. I just shivered and shivered all day. And then at night, I’d sweat. So when I ran the CDC Self-Checker and they asked about sets of symptoms, and I saw one for me, I first felt really validated. And then I laughed, a little weak puffy chuckle. Because their tool implied that maybe I had been sicker than I thought I was.

CDC Self-Checker

Still, I made it fine, at home, and what I’m hearing from most of my health care provider friends is that you REALLY don’t want to go into the hospital if you can possibly avoid it. If you can possibly recover at home, stay home. And that’s what I did. And it worked, for me. Anyway, when I start chilling now, I don’t think this is the virus anymore, I just think it’s my body being overextended and worn out, and it’s usually only for a short time. The chilling isn’t attached to weakness or sweats anymore, it’s just feeling cold. It stops when I lay down. And that’s why I haven’t been getting these posts done. I’ve been pushing myself too hard, and I keep thinking I can do this later, because it will be easy. And then it isn’t. I’ve been trying to write this for three days now. Maybe I’ll finish it today.

By evening, it’s all I can do to lay down and let my son make dinner. I haven’t had veggies in weeks because he doesn’t do veggies, and that will surely contribute to my fatigue, so I took a break for lunch a couple days ago and threw a bunch of greens, beans, sweet potatoes, onions, garlic, potatoes and black rice in a pot and made some sort of vegetable slop. Let’s just say I’m not actually cooking up to my usual specs either. I’m a really lovely cook, and going out to eat is usually a step down. Right now, not so much. My tastebuds are still shot, probably from all the ColdEeze, so maybe my cooking is fine and I just can’t taste things? Also, I stocked up really well, as usual, and we’ve done fine at home with the food I already had, but we’re getting to the point where we need to replenish a few perishables, eggs most of all. It’s been three weeks, after all. I’ve been trying for days to get a delivery slot for groceries, and that just isn’t happening.

As someone in the high-risk category without a CONFIRMED case of COVID-19, I really shouldn’t be out anyway. Or should I? You see, without a confirmed case, you are in an awkward situation. You get all of the joys of being sick and having been sick, without the benefit of presumed immunity from knowing you had the thing everyone is avoiding. You have to both act as if you might be highly contagious while also following guidelines for being at risk of getting it again. And the guidelines from the CDC and the doctors aren’t terribly helpful. Friends from Asia have been pointing me to research articles showing that some people still show viral shedding up to 37 days after the onset of symptoms, but they don’t have a clue as to whether that virus is active and infectious or not. There is confusion about whether this is different or the same for those with more severe cases or with mild cases.

The doctors here tell me they can only follow the CDC’s recommendations, and according to those, it’s perfectly safe for me to be out and about. But is it? Am I safe for others to be around? Is it safe for me? I’m not sure. Some folk have already said they are kind of freaked out to hear I went outside and walked around the block, with no one closer to me than across the street. One one hand, I know they are over-reacting, but on the other hand, what we know is so ephemeral and fluid right now. If nothing else, this is an exquisite illustration of the way science works ALL THE TIME. Science is always fluid, and scientists largely acknowledge that much of what we “know” depends on the last piece of research and may shift with the next piece. The general public thinks of science more along the lines of grade school true/false tests, with a definite hard-and-fast forever truth. Nope. That’s not science. That’s a myth or a religion wrapped in science-themed gift paper to make it easier to accept. Real science is messy, and changes.

[SIDEBAR: Sometimes science communicators use the analogy of an onion’s rings, which really doesn’t work for me. The idea is that science has core precepts that other scientists tried to disprove over and over, and couldn’t. Those are the center ideas that don’t change, the ideas that we would tend to have on those grade school T/F quizzes. The rest of the science moves outward from that, and the further out the less sure we are, the more vibrant and likely to change things are, the adventures and excitement of scientific discovery live at these far edges. But with onions, the vibrant life is push out of the center, and it is the edges that are dry and static, so I have mixed feelings about this analogy.]

For now, given that I haven’t had a sign of a fever in almost a week, and tomorrow morning it will be a solid three weeks since I first got sick, I’m calling this part done. This will be (I hope) the last post about my personal experience with this. I’ll do another collecting some links to other people’s experiences, because I’m only one person, and my experience may not be typical, so I want you to have some others for comparison. Part of the problem right now is the information being shared is all about what happens to the folk who get seriously ill, and there just isn’t enough about the mild cases, what that experience looks like, what recovery feels like. There are stories about people who are sure their case is mild, and wait too long to get help. There are stories about the people who go in, and are sent home, and the going in makes them worse. There are stories, lots and lots of stories, about people who had some mysterious long lasting virus that was too early to be COVID-19, or before we were doing testing here, and whose symptoms maybe were more like mine than what was the expectation at the time. There are stories from healthcare providers saying to themselves, is this what I’ve been seeing all winter, and I just didn’t know what it was? We don’t know much. So I hope my sharing my story is useful (I’ve been told it is), and I’ll continue to share some COVID-19 info here, but I’m hoping to get back to more of the regularly scheduled programming.

Undiagnosed, Day 16

UPDATE, MARCH 29, DAY 16

I’m getting better, I swear I am. It’s been three days since I had a fever. I still have chills, but not sweats. I still wake up with a sore throat and congestion, but not as much of either. (Started the day with the usual sore throat and congestion, but both were milder. I wondered how I would do if I didn’t take a ColdEeze, so waited an hour before I gave up and took one, which helped within minutes.) I’m having times when I feel like I can do sort of normal things in a normal way for a bit. Last night I actually looked at a stack of origami paper and almost picked it up. I read a few pages of a book I was reading before this all started.

I had done a lot of cooking right before this all started, and that was a good thing, because that lasted me a long time. There were also a lot of days when all I could taste was salt, and I wasn’t very hungry, so I ate a bag of potato chips for lunch. Most of this, I was eating one meal a day, and a few small snacks. But yesterday, I knew I needed to cook or I wasn’t going to have anything to eat. I’d made some quinoa a couple days ago, and hadn’t done anything with it other than spoon soup over a a few spoons of it for lunch. I had my son help me mix it with eggs, dried, canned, and frozen fruits, a couple handfuls of sugar and spice, and bake it. So, that should last me for a few days, hopefully. And my son made me a pizza for lunch. That’s two meals that won’t take a lot of effort. Lots of food, just not lots of energy.

Because I’d been starting to feel better, and because I made it around the block, on Friday, I was thinking I wanted to start rebuilding my strength. You see, I’ve been ill for long times before, and you lose muscle mass, you lose stamina, and it takes a lot longer to get it back than it takes to lose it. I’ve been through that. I want to get strong again as fast as I can, and I want to minimize losses as much as possible. I decided I needed to walk a little further, not too much further, and I took kiddo along because I don’t trust my body that much these days.

The nearby park that isn’t a long walk is about four blocks away. We got there, and I rested on a rock for a while, then we came back. I’d gotten a slight headache before we got there, and the sense of pressure was more noticeable by the time I got home. When we got home, I sat down and didn’t move for two hours. At three hours, I was able to stand up again briefly. At four hours the headache went away. I spent most of today recovering from that over-exertion, but now it’s evening and I’m feeling okay.

Meanwhile, my son has NOT had any further symptoms, but today I was convinced he had a fever because he felt so much hotter than me. Both my thermometers broke (one, the battery died, and the old glass one shattered and I got to clean up the mercury). A friend brought me theirs, and … surprises. Yes, he’s warmer than me, but no where near fever. Maybe part of the reason I’ve been chilling so much during the days is because I’m actually so cold. His temp is normal. Mine is 97.0F. I had fevers earlier in this, the first week and some in the second week, but that sure isn’t the case right now.

Undiagnosed, Day 15

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UPDATE March 28, 2020; Day 15

When I have too many posts in a row that start with the reminder that this is part of a series, people get confused which one they commented on, so … mixing things up. I will add this to the main giant original post. https://www.facebook.com/pfanderson/posts/10157284631197903

Yesterday I mentioned that I had a long full night’s sleep, and that this was unusual. I was still tired though, and still took a quick catnap over lunch. Last night was back to usual. What’s usual? Well, there isn’t an actual daily consistent pattern, but what’s close is that I chill all day (huddle over my computer with a blanket on my lap and another wrapped around my shoulders) and burn all night. Some nights, that’s waking up sweating, over and over. Other nights I wake up hot and dry, my throat is burning, and I can’t get back to sleep. Last night was roughly 5 hours of sleep. It was a hot, dry, throat burning night, and when the thunder and lightning started, I knew it was time to give up and get up, and take a ColdEeze. Usually, the sore tight throat goes away when I have my second ColdEeze of the day. And, yes, I already have a scarf around my throat and a blanket on my lap.

NOTE: I did go for a walk yesterday, towards the end of the day when I felt better. My son went with me, because I got a little wobbly, but I made it around the block. I’m counting that as a win.

How’s kiddo? Well, so far so good. If he’s actually sick, we can’t tell. Maybe I was just worrying because he had brief symptoms. Maybe he is sick, and contagious, and it’s just so mild that we can’t tell by looking. Time will tell, maybe. Someone asked if it could be allergies. Yes, we both have seasonal allergies. No, this is not them. How do I know? Zinc. I’ve been doing this for over a decade. Because I’ve been taking zinc as a kind of a prevention, pretreatment, a priming dose, I’ve noticed very quickly that it does absolutely nothing for allergies. It also doesn’t do much for bacterial infections. So, if ColdEeze helps symptoms, even a little, those symptoms aren’t allergic, or an infection that could be helped by antibiotics, they’re viral.

Folk have also been asking me about the new diagnostic clue making the news — for some people, a warning sign prior to developing symptoms is a lessening of the ability to smell and taste. My experience with this is a little warped, and it may make a useful example of why these signs and symptoms may not always be terribly useful, except in hindsight.

So, first, was my sense of taste and smell altered? Yes. The day before I got sick, all I could really taste was sour. After that, when I started the ColdEeze, mostly what I taste is salt and sugar; with salt tasting good, and anything sweet tasting foul. I’m over-salting and over-spicing everything in an attempt to have flavor. HOWEVER, is this meaningful or significant? I didn’t think so, or I’d have mentioned it sooner.

Why didn’t I think it was useful info? Partly because this is a respiratory thing for me, and that means congestion and such will interfere with smell. I don’t find that surprising at all. Partly because I’m taking ColdEeze, and it’s well known that it kind of destroys the sense of taste, and can actually cause permanent damage in this area. Last but not least, under normal circumstances I’m a supertaster, and so even with taste damped down, I’m still probably tasting more than expected. When this started, it wasn’t dramatic, like I couldn’t taste anything, but more like food was bland. Since I was not eating at home the day before I took ill, I didn’t know what to expect for flavor, and assumed it was just the way it was prepared.

Undiagnosed, Day 14

I will add this to the original post.

Reminder! My case is an assumed-to-be-the-real-thing-so-you-quarantine case of COVID, not an official presumptive, nor confirmed.

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UPDATE, MARCH 27, DAY 14

I slept 11 hours. I slept ELEVEN hours. Wow. Of course, this means I didn’t take any ColdEeze for 11 hours, so I woke up congested, with a sore throat, and a small cough. Hunh. And tired. How can I sleep 11 hours and be tired? Not sleepy tired, but low energy. And my hands are just a little shaky. That’s not a surprise. It happens whenever I’m tired.

Meanwhile, the kid getting sick has me thinking back to when I got sick, and remembering things I haven’t shared here, which may be entirely irrelevant. Things like the day before I developed symptoms I had a CRPS flare (chronic pain). I was slightly more tired and out of focus than usual (but it was Friday, so that’s not a surprise either). About 14-15 hours before symptoms started I had a tiny catch in my throat. It went away right away, but I’m thinking THAT was significant.

So, kiddo? He woke up feeling mostly fine. Slightly froggy, but no sore throat. OTOH, his stomach is still full from dinner last night, and I’m thinking maybe he’s going to be one of those folk who gets COVID19 in the gut instead of the respiratory system. I’m not prepared for that. I prepared for all kinds of things, but I did not stock up on gastritis stuff that the kid can tolerate. What was I thinking? I was thinking I was prepared for a normal case of influenza, and for the respiratory business, and for quarantine food and supplies. I wasn’t thinking about a major extended case of gastritis. So now, I’m worried.

Undiagnosed, Day 13

UPDATE, MARCH 26, DAY 13

Today was mostly a good day. My energy was good. No chilling, no sweats. Some fatigue, but manageable. Friends helped get just a few things we were out of (a little produce, some cheese for the kid). Greatly appreciated! Had offers from three other friends to pick things up, but we don’t actually need that much, luckily. We will before much longer, thought.

We had been trying to reach kiddo’s doctor to get a letter to say it was okay for him to go back to work. They need workers, he’s worried about losing his job if he’s away too long, we need the money, and my official quarantine should be over tomorrow (except it won’t be, for me). The doctor sent the letter, and we were very happy, until … he started coughing, got froggy, and a runny nose. Oh.

So, now, kiddo is sick-ish, and we are waiting to see how bad. I’m still kind of fatigued and worn out. Hopefully, he won’t get it any worse than I did. If we’re lucky, maybe better. But we told his job he can’t come in, and no one is happy about that.

Undiagnosed, Day 12

UPDATE, MARCH 25, DAY … 12?

2nd week is tougher. Kiddo wants to know why I’m so weak. No answers. Last night was night sweats. Today I got to mix up chills and heavy sweating. Naps. Multiple naps. Weak. Really weak. Took today off work. Asking for help from other medical librarians for some of the questions coming to me over social media. Answering what I can. Missing all the cool free concerts and movies being streamed. Bummed.

Things I learned today. Kiddo probably can’t go back to work until I quit having symptoms. Not sure yet. Some people have viral shedding for weeks after their symptoms resolve. HOWEVER, they don’t think they are actually contagious. And viral shedding is usually undetectable at 20 days after symptoms start. So that’s good. Ish. And because of the whole surfaces thing and my being too weak to clean, no one should come into my house for probably a month after I get better. Erring on the side of caution.