Tag Archives: covid19

(un)Diagnosed: Day 550 (18 Months, 78 weeks) It’s not over until it’s over … 

A square of white notepaper on a dark blue fabric background. The notepaper is folded into quarters, and in each quarter is roughly sketched an eye. Top left: a colorful eye with a rainbow iris; top right: a gray eye surrounded by purple, blue, and green; bottom left: a half closed eye showing lavender whites and surrounded by thick gray; bottom right: a closed eye.
A sketch I drew of Long COVID for a workshop during the Graphic Medicine Unconvention, August 13-15.

It’s been a while since I did one of these updates, and a lot has happened. And nothing has changed, or … at least it feels like that some days. Today it is 18 months since I developed the first symptoms of COVID, 500 days. It’s starting to feel like … forever. It’s funny, because I was so hopeful and determined for so long, and now I’m not. I’m much better, but part of me is giving up. The closer I come, the farther away ‘normal’ seems.

The drawing at the head of this post is one I drew during a workshop for the Graphic Medicine Unconvention. I have hand tremors now, better some days, worse other days, but the quavering in the lines is that, the tremors. It made it hard ro draw, and I wasn’t sure I could draw anything at all, because the tremors were pretty bad that day, but I decided I could draw cartoon eyes. I grabbed felt tip markers, and tried. Expert storytellers say to start your story before everything changed, when things were normal. That’s the first eye — all colorful, bright, vigorous, full of Spring and colors and energy. The second eye shows the early months, the acute COVID phase, and the first many months of the long COVID experience, when I was constantly bitterly cold (except at night, when I was burning up). I cut my hair extra short in December, but no one noticed until mid-summer, because that’s when I finally stopped wearing winter hats indoors all the time. The third eye is half asleep to show the fatigue and brainfog. The last eye, the fourth one, is closed, just a few chicken scratch black lines, to show both the extraordinary amount of time I spent sleeping over the past many months, but also the times I just wanted to die. I’m pretty sure I’m past that, or I wouldn’t be mentioning it, and let me tell you, my family is more than ready for that part to be done, but when I drew this it was still a far too vivid memory.

In some ways, I’m a lot better now. In some ways, I’m not. I’ve just been approved for a graduated return to fulltime work. I’m supposed to be back fulltime in two weeks. Cognitively, I’m ready. Brainfog is rare now, and I’m cognitively more clear than I was even a couple months ago. My cognitive endurance is much better, and when I push things too much, I bounce back faster.

Physically, I’m not remotely ready. I was almost ready in June, but then there were some problems with my being switched to a different rehab program to speed up the process, and instead it knocked me back several months of progress. It’s a long story, and I don’t want to talk about it, so don’t ask me. It’s enough to know it was bad, really bad. At the time, I was walking about 4500 steps a day. Nothing like the 11,000-12,000 I was doing before COVID, but enough that I could probably get to and from the office on public transit. I felt great. I felt like I had so much energy. I was so hopeful. After the crash in early July, I was knocked back to 700 steps a day, and I spent a month crying every day at some point. Pacing is absolutely critical for Long COVID folk like me, with predominantly neuro symptoms. Part of pacing is figuring out your warning signs. After this crash, they all changed. I couldn’t tell how to know when I’d done too much. I felt really lost. Things gradually started to return to something I recognized, but it took a long time. After two months, I’m now up to about 1500 steps a day. This is not enough to get me to the corner drugstore and back safely, but I’m working on it, and hopefully in a few more months, I’ll be back to the 4500, and able to try to go to campus again.

Okay, enough of that. It still looks like I will eventually recover to a level that will allow me something resembling a normal-ish life. I remember telling my neuro rehab therapist during the first appointment, “I want it back. My life. I want it ALL back!” I wouldn’t say that now. I do think I’ll get back to everything I used to do, just not at the same level or speed I used to do it. And there are silver linings. I used to have an uncontrollable vocal fry that made me have to stop singing, and the treatments I’ve been doing have given me back part of my singing voice. Not much, but at least I can enjoy singing in choir again. I’m grateful for that!

Overall, healthcare doesn’t know much about COVID or Long COVID, but they have learned a lot really fast. There is more coming out all the time. As you might imagine, I’ve been keeping an eye on this. I’ve been collecting a lot of clinical guides, best practices, interviews, etc. I’m going to put those in a post, but not this post. In a few days. I have all sorts of goodies to share with you!

(un)Diagnosed: Day 429 (14 Months, 61 weeks) Better, and Better, and …

A grid of four photos shows macros of (clockwise from upper left) a Pedialyte bottle, digital thermometer reading 95.4F, nebulizer tubes, and a pulse-oximeter reading 96% oxygenation with a pulse of 56.
Pedialyte, 95.4F temperature, nebulizer tubes, pulse-ox = 56 pulse, 96 O2.

Here we go again, my now monthly update on life with Long COVID. Things are much better, but still complicated. Last month I mentioned that I have a neurologist now among my specialists, and that he’s made some suggestions that really helped. The most obviously impactful suggestions are increasing electrolytes, wearing an abdominal binder (not pretty, but hey, I’ll take it), and increasing my mast cell inhibitor meds (which has drastically improved the quality of my sleep, also helps with brain fog, among reducing other symptoms).

A month ago I had been able to increase my walking. I was up from walking around the block I live on once a week to twice a week. (Before that there were several months where I had been unable to walk around the block.) I tried every other day, but at that time this was still too much. I am now up to being able to walk around the block two days in a row, but I still have to rest the third day. This is simultaneously exhilarating and disheartening.

What happens on that third day if I try to do the walk? Well, the first day, walking around the block is just lovely. It’s amazing how, when you haven’t been able to, getting to the other side of the block can look like you’re on vacation. Here’s neighbors, flowering bushes, birds are singing, all these things I’ve missed for so long without necessarily realizing I missed them. The second day feels empowering. Look at me, it feels just the same, sauntering along, I can do this, I’m back to normal, soon I’ll be able to do everything. Right. The third day feels just the same as the second for the first hundred yards or so. Then the fog starts to kick in, I’ll start to have some balance issues, wobbling just a bit. After another hundred yards I’m aware I really need a rest. Luckily my block has a place to rest there. Halfway done, now to get back home. I lurch back to my feet, and the rest of the walk will be staggering as if I’m drunk, balance just gone, struggling to keep my head up and my eyes open, arms stretched out to improve proprioception, trying not to accidentally run into people or walls. So, I’ll try two days on and one day off for another couple weeks, and then three days, and keep nibbling away at it.

I am improving with ADLs (activities of daily living). I can make my own meals most of the time. I can do my own laundry. I can help with dishes sometimes. I am FINALLY able to do a little bit of housecleaning sometimes. Let me tell you, after a year of being largely bedridden outside of work hours, the house is pretty terrifying. I mean, REALLY terrifying. I honestly didn’t see how bad it was until the brain fog lifted more consistently, and I hadn’t realized how bad and constant the brain fog was until it started to go away.

Brain fog ebbing gives me more spoons for cognitive work. This means, yes, I’m able to do a higher level of work, more creative work, but it also means that I am able to do things like remember I made a promise to someone and followup on it, able to plan my time to reserve energy for specific things, better able to predict my crashes, and better able to notice my body’s warning signs of needing rest. It also means that I am more prone to thinking I can do all the things I used to do, and find myself locked in hyperfocus working too many hours trying to just finish that one last thing. I’m finding that I need to take a fairly significant break midday and step away from work to do something completely different. Unfortunately for my body (and fortunately for almost everything else), part of doing a job is being part of a community of people engaged in related and interwoven activities toward common goals, and when my body announces it would like a break, thank you very much, this doesn’t always align with everyone else’s schedules. When I push through to accommodate large group meetings or meetings that had been really challenging to get scheduled, I find those days I’m back to spending the evening flat and foggy.

The other important thing for me that is connected to a reduction in brain fog is my ability to read is coming back. I can now read research articles and make sense of them. I can read challenging books on serious topics if I break them up into small bits and stretch it out. I’m still reading mostly light fluffy fiction, but I’m able to read more at a time, read longer, read faster, and even if I’m not yet able to read my usual materials on a regular basis, I count it a win that I’m able to read them at all. I’m counting on my mental muscles stretching just like my energy envelope is growing.

The toughest part of improved and more consistent cognitive function is that I realize better just how bad I have been, and how far I have to go. This is scary and sad. I didn’t feel as scared about it before, I think because I simply lacked the energy to project into the future likely impacts or realistic outcomes if my symptoms persisted. I’ve been kind of Pollyanna-ish about all of this. Not a bad approach, and it’s paying off, but I’m having more days where it’s all rather overwhelming.

There are some other things that have improved as well! I’m not as cold all the time (although my temp was 95.8 earlier today). I still cover up with blankets most days, but not ALL day. I wear layers of winter hats, but less often. People who haven’t seen my hair in four or five months are surprised by my haircut, which happened in December, but I’ve been wearing layers of hats all the time for months. My hands still tremble, but it’s minor and less frequent, and I can work through it, often without really noticing (my son is the one who notices). My ability to taste and smell is much better. Instead of about 5% with erratic blips of partial or full flavor, I’m at more about 70%. I can taste and smell pretty much everything at a less sensitive level than I used to. I can actually sing more often than not, and my voice doesn’t often make the machine gun noises it used to always do when I tried. My vocal range had decreased from 3.5 octaves to 0.5 octaves, and is now up to about 1.5 octaves. This is enough to sing in choir again. Many people with Long COVID have had hair fall out by the handfuls, while I just had a lot of hair turn gray or white. I already had a gray streak in front, which turned bone white at the peak of the illness, and a lot of the hair around it turned gray, hair on the sides and back of my head as well. Well, now, some of my hair color is coming back, and the patches of gray are shrinking and the white is going back to gray. I don’t expect to have it all come back, but this is heartening and tells me I am genuinely getting better.

(un)Diagnosed: Day 398, Week 57, Month 13: Making Progress

This month actually still looks a lot like last month, still very much good days and bad days, although some significant things have happened. The good days are better, and the bad days aren’t as bad as they once were. I have a new specialist, a neurologist. They say, oh, yeah, I DEFINITELY have dysautonomia! They added POTS. This gives me what has been appearing as an unholy trinity of diagnoses that have been cropping up among many of my friends and social media acquaintances: joint hypermobility (like EDS); mast cell issues (autoimmune and MCAS especially); and POTS (or other forms of dysautonomia). Yay, I joined the club? Or not so yay.

The neurologist had a list of things people can try to feel better, and which patients sometimes discover on their own. I was doing most of them already (examples: salt loading, increased fluids, sleeping with a raised head of the bed, taking breaks where I elevate my legs, neuro rehab, compression stockings, and more). It seemed to surprise them that I was already doing so many. Since I wasn’t doing everything, we’re adding the rest and doubling down on interventions which are low cost, low risk, and offer a big bang for the buck. Compression stockings are shifting from knee high to thigh high. Adding an abdominal binder, which you can think of as a medicalized corset. Even more salt (a LOT of salt!). And fluids. Specifically electrolytes. I’m up from a half gallon a day to a gallon, at least half of which is oral rehydration fluids (like Pedialyte, although I’m using TriOral). It’s amazing. It has really cleared out a lot of the brain fog. I have a fair amount of experience powering through brain fog because of having celiac, and I’m also pretty good at ‘faking’ feeling okay when I’m not. The idea that the tunnel vision feeling I have been living with will just vanish if I drink a pint of electrolytes? MAGICAL!

An example good day: With the brain fog cleared out, I could successfully do many of the things I’ve been struggling with. I could also better manage actually taking breaks appropriately instead of slipping into brain fog and hyper focus. I’m also getting better at recognizing when the brain fog is starting, and taking action to head it off, like electrolytes and raising my legs. Last Saturday was the best day I’ve had since before the pandemic started. I have for many years tried to follow the National Poetry Writing Month practice of writing a poem a day during April. Last year didn’t go so well, but trying again this year. Here’s an excerpt from the happy sonnet I wrote for last Saturday in my poetry blog.

“A day almost like beforetime, when I
could walk if I wanted and still breathe, twirl
as if music is lilting or play twister
and not fall. The luxury of an airway
uncluttered, muscles not withered, and hey…”

PF Anderson, Singing, #NaPoWriMo 2021 Day 10.

There are still bad days, too, and they seem to be triggered by a combination of things. We know that maintaining personal hygiene still seems to trigger crashes. Doing too much does also. Not taking breaks. Etc. Last week the inaugural COSMO conference happened, and I was on the planning team, so, yeah, I did too much and didn’t rest enough. I also had lab tests for the neurologist and to test whether the vaccines actually triggered antibody production, since having COVID didn’t. Crashes for me come in waves — there are immediate crashes during activity, delayed crashes at 18-24 hours after activity, and even more delayed crashes at 3 days out. I read about someone who has crashes at 5 days after their triggering activity, and that must be really hard to manage. So the trip to the blood draw and the extra COSMO activity were 2 and 3 days before the now weekly shampoo, and these three combined to ill effect. The good news is that boosting electrolytes helped reduce the impacts of that crash. Here’s my Facebook post from Sunday describing how that day worked.

"I didn't like seeing my friends. It wore me out. Everything was hard for me: having a conversation, focusing, not being tired. I had to prep before they came over, sleep and store up my strength." Image shows a grayscale pencil sketch of two young women talking while a third stands smiling in the doorway behind them.

Today I read PARENTHESIS by Élodie Durand. It was very strange to read. I don’t have brain cancer, but her description of her life feels so much like mine in some ways.

Yesterday was a good day. Probably the best day I’d had since before COVID19. Today was not a good day. The worst crash I’ve had in a couple months.

I felt fine when I awoke. Started a load of laundry. Took my meds and the first quart of electrolytes. By 9:30am the chills had started, but I hadn’t eaten yet, so kiddo helped me make a bowl of cereal, and I made myself eat it before I lay down.

By 10:30am I was back in bed, covered with the weighted blanket and a few more. By 11am I’d passed out. When I woke at noon I couldn’t talk or lift my arms. I tried, but I didn’t make sense. I couldn’t remember the words I needed. I couldn’t construct a sentence. I couldn’t ask for the help I needed. I would say the same word over and over, frustrated that kiddo couldn’t figure out what I needed. Later, when I could talk again, we agreed that the next time this happens he should record it to we can show the doctors.

A few weeks ago I started to see a new specialist for the post-COVID dysautonomia, a neurologist who has other #LongCovid patients and who specializes in autonomic disorders. He has added POTS to my diagnostic collection. He was surprised & pleased how many of the things they recommend I was already doing. So he bumped things up.

Some of the things he added: 8 grams of salt a day (that’s a lot!). A gallon of fluids, half electrolytes, half water. In a few weeks I have an appointment to fit an abdominal binder, which is kind of a medical corset, and thigh high compression stockings. He says these will all help with suspected pooling of blood in the gut and legs. He said the reason for the brain fog is that blood is actually not getting to the brain.

I’ve been finding the electrolytes are having an amazing impact. Drink a quart, and the weakness just fades, the brain snaps into focus, I feel more like myself. So today, when everything went away, I tried to get kiddo to bring me electrolytes.

Usually I just bottoms-up and guzzle a whole quart. Today I couldn’t lift the bottle. He had to get a small cup, pour some into it, help me with it. After the first cup, I could handle the second cup, with both hands. After the second cup, I could pour my own, and could finish the bottle.

So, that was noon. It was a couple hours before I could sit up without help, or stand up to go to the bathroom (because QUARTS of fluids!). I couldn’t read a book because I couldn’t hold it open.

I finished two quarts (yes, that’s an extra, but I seemed to need it today). And, voilà, I’m back! I could make a simple lunch. I can’t stand long, but I can get up and do short activities. Yesterday I did three loads of laundry, a load of dishes, and walked around the block and felt okay. Today, nah. Let’s not.

But I did get to where I could hold a book again. We use TV dinner trays to hold the pedialyte bottle, a cup, the book. I can prop the book up so it isn’t as tiring to hold. It was an amazing book. A bit gutting to have so much of it resonate so tightly.

And tomorrow, I’ll feel fine. How much you want to wager? Well, fine-ish. Enough to sit at a computer and people will think I look normal.

(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
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.


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.


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.


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

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


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

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.


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.