Everything changed in March, didn’t it?

Philadelphia, my city, shut down on Friday the 13th of March.

My husband and I hustled to finish critical experiments in lab and bring our data home. We ordered groceries online, stocked our freezer, and tried to get used to working as our son sat on our laps watching Paw Patrol.
My friends and I met for a virtual happy hour via Zoom on March 18th. One friend joked that she was “totally going to be a first-waver.” I boasted there was no way I was going down in the first wave—because of the virus, we’d been avoiding social events for weeks, had obsessed about hand washing, and were ready to hunker down at home for at least a month. We had followed every recommendation (including, unfortunately, the recommendation of CDC and WHO officials to NOT wear masks).

Fate punished me for my arrogance within hours. My COVID symptoms started that same night. COVID made me so weak I literally couldn’t stand. I’d get out of bed to do something and find myself asleep on the floor hours later, not really sure how I got there. I was too weak to do something as normally effortless as brushing my teeth. I had to crawl to get to the bathroom—my legs would give out when I tried to walk. I had some GI symptoms and no appetite and, although I wasn’t coughing, I found it difficult to breathe– it was as though I had a 40-pound weight on my chest. I had a 101^o fever that just didn’t break. I was haunted by intense fever dreams that bordered on hallucinations (there was one I remember where NY Governor Cuomo was in my bedroom, force-feeding me chamomile tea).

I called my doctor but I wasn’t able to get a COVID test because, in Pennsylvania, they were exclusively available to healthcare providers and people over 50 with preexisting conditions. My doctor told me, however, that I was ‘presumed positive’ for COVID, I should absolutely not come to their office, and should not go to the ER unless I couldn’t breathe. He promised that the lack of a confirmed positive test would have no impact on my care. My instructions were to self-isolate, take Tylenol, and drink plenty of fluids.

Basically, I was on my own.

I was too weak to get changed so I wore the same pajamas I fell asleep in on the 18th for an entire week, until they reeked from fever sweats. I felt disgusting and finally asked my husband to help me get cleaned up and changed. Because I was unable to stand to shower, my husband helped me into the bath. The effort of getting downstairs and undressed made me so tired that I kept nodding off as I was trying to wash myself. When I fell asleep and didn’t wake up until my face slipped underwater, I realized that a bath was too dangerous, and called my husband to help me get back into bed.

Those last two weeks of March still feel like a nightmare.

Thankfully, towards the beginning of April, I started to feel a bit better. I became able to dress myself, brush my teeth, take a shower! I thought I was out of the woods at that point, and would be back to my old self soon. My appetite started to return but I realized I couldn’t taste anything. A cookie tasted like a handful of sand; pizza was just like biting into soggy cardboard. I accidentally put salt in my tea instead of sugar one morning and drank it anyway because I couldn’t taste the difference. Because I had no taste, I became very sensitive to the textures of food. I ate a lot of citrus because the texture of the juicy pulp popping in my mouth was nice—but I couldn’t taste the difference between grapefruits and oranges.

I had other odd symptoms, too. The weakness in my legs persisted. Although I could manage most household chores, and could work on my laptop and look after my son, something as simple as a walk to the mailbox would utterly wear me out. I would randomly feel a strange tingling sensation, like icy raindrops on my skin, on my arms and legs. The second I ‘overexerted’ myself, doing something I took for granted before March 18th, like gardening or washing the car, I’d start to run a fever again and get a sore throat. I had terrible dry mouth.

At that time, COVID was characterized as an upper respiratory illness that lasted for a maximum of two weeks. My doctor did not seem concerned about my continuing symptoms and did not attribute them to an unconfirmed COVID infection. I was able to work from my bed on my laptop, so I just tried to focus on that and power through what I was feeling.

But by Mother’s Day, in mid-May, I still couldn’t taste anything. My guys made me delicious looking brownies that just tasted like clay to me. I sadly put them in the freezer, hoping I’d be able to enjoy them at some point soon. Because of the intensity of the virus and my inability to taste anything, I’d lost about 30 pounds since I first became ill. At 5’8”, I went from a healthy size 4 before getting sick to a size 0. My ribs and vertebrae poked out from under my skin. Around this time, my GI symptoms suddenly worsened. I had strange rashes. I finally sought medical care again when I developed visible hematuria (the medical term for blood in your pee).

In late May, still not able to taste anything and still not feeling great, I was finally given a COVID PCR test. Unsurprisingly, at that point, it came back negative (tests are accurate in the first days of the illness, not two months after symptoms start). My doctors were baffled by my symptoms but not as dismissive as they had been earlier—it’s harder to dismiss quantifiable things like blood in urine, episodes of fever, rashes, and swollen glands than it is to dismiss things that can’t be measured, like loss of taste, fatigue, weakness, and GI issues. Although my ongoing symptoms were still not attributed to COVID, tests were run to detect UTI, kidney stones, Lyme Disease and borrelia, lupus, Epstein-Barr, and blood cancers. Thankfully, these tests were normal, and my doctors and I have since learned that the symptoms I was experiencing are extremely typical of long COVID. The only thing that turned up from my bloodwork at that time, however, was an electrolyte imbalance. I was advised to drink more Gatorade and was sent for a CT scan.

The CT showed the effects of my rapid weight loss—I’d lost most of my body fat, including the fat pads between my organs that normally kind of keep everything in place. This led me to develop something called superior mesenteric artery syndrome (SMAS for short). My duodenum was being compressed between my aorta and a large artery, causing a blockage where food was trying to leave my stomach. This explained why I was nauseated and vomiting. I was advised to start a high-calorie, high-protein liquid diet and to do everything possible to gain weight, and if that didn’t work, a feeding tube would be surgically implanted.

A lot of milkshakes were in my future.

I followed this advice and continued to rest as I delved into my work—it was something that could be done while being relatively sedentary, and it felt so good to do something productive despite how sick I still was. Unfortunately, however, I was given notice and laid off in June. It was utterly devastating— losing my job meant not only the loss of my income but also my professional identity as a scientist. What followed was a period of pretty deep depression, which was the reason for my hiatus from this blog.

My health improved slowly over the summer but strange things have continued to happen to my body. The last time I ran a fever over 100.4 degrees (what I was told ‘counted’ as a clinical fever) was in late June. My sense of taste gradually returned and by the 4th of July, I was thrilled to be able to taste the food at a small outdoor BBQ with my extended family. I still have occasional hematuria and proteinuria, which is scary, especially because I still don’t know why this is happening. My hair fell out in huge clumps all summer long but is growing back now. I developed vitiligo on both cheeks. I have some new dental issues and terrible dry mouth and am currently being evaluated for Sjogren’s Syndrome, an autoimmune condition. I’ve gained about 20 pounds since May but I still need to maintain a mostly liquid/soft foods diet and may eventually need surgery to correct SMAS. I can no longer tolerate alcohol, which sucks because I could really use a glass of red wine (OK, let’s be honest, a bottle—it’s been a hell of a year). One of my other most troubling problems is that I still can’t exercise. If I try to do so, even at a fraction of my pre-COVID activity level, debilitating leg weakness and fatigue hits me the next day or two. Before March 18th of this year, I routinely exercised for about an hour a day. Today, even a 20-minute gentle yoga class can leave me on the couch the following day.

This specific issue—exercise intolerance—is shared by thousands of COVID survivors throughout the world, mostly women about my age who were in good health before becoming ill in the spring or summer. It’s a clue that COVID may be triggering myalgic encephalomyelitis (ME), a poorly understood yet debilitating long-term post-viral disorder. Many, many, many previously healthy women who contracted COVID in March and April are still sicker than I am. So, despite my lingering battle wounds from my fight with COVID, I consider myself fortunate in that I am able to carry on with a somewhat normal life, unlike others who are still laid flat by their encounter with COVID 8 months ago.

Many ‘long COVID’ patients have been dismissed by their healthcare providers, especially because previously healthy first-wavers like myself were not given a timely COVID test in the spring. Without that positive test, our symptoms have too often been attributed to other causes, like anxiety. We’re paying the price for the failure to make COVID testing available more quickly.

Media coverage has really helped the voices of COVID long-haulers be heard, and the medical community is starting to listen, though many skeptics are still dismissive. I get it, I really do. My years of scientific training make me bristle at the thought of ‘presuming’ anything, especially at being given a ‘presumed positive’ diagnosis of a serious illness. It’s the main reason I didn’t want to write back in April or May about my ‘presumed’ experience with COVID—I like the certainty of viral RNA bands on a PCR test, not an over-the-phone probable diagnosis based on self-reported symptoms. I also don’t love publicly discussing being sick and I don’t want the stigma of having had COVID.

But I’m writing now because, regardless of my personal hang-ups, I think it’s important to add my experience to accruing accounts of COVID’s long-term effects. As we go into the winter holiday season, and people may consider taking risks that increase their chances of viral exposure, I want everyone to know that COVID outcomes aren’t simply binary, where you recover fully in a matter of weeks or you die. There’s a vast grey space between those two extremes, and that’s where I’m living today.