“Three months after recovering, COVID reignited my rare autoimmune skin condition.”

NEW YORK, NEW YORK: When there was talk about this mystery virus in China, I wasn’t personally concerned because I thought they were isolating it to that area by restricting travel. Then, we heard about people getting sick on a cruise ship. Only when I heard about a woman and her husband in New York who were diagnosed with COVID-19, did I start to get concerned because everybody is in such close proximity to each other here. My stepdaughter and I both have autoimmune issues and we both work in the same open floor plan office so I got a little worried. 

My boss was great. I talked to her about my concerns, and she agreed to let me work remotely. I thought I was doing the right thing being safe. But, I still had to go in person to the office for a couple of days. 

Some people had masks on when I took the train. It freaked me out. So, I took my scarf and put it around my face. There was a lot of bad information out there telling people not to wear masks and not to quarantine unless you had symptoms. It was before we knew that you could test positive and have no symptoms. 

My gym instructor told me that there was a sign up at her building that someone had COVID, but they wouldn’t say who it was. I thought, “Oh God, here it comes. It's now it's on the upper Westside.” I thought I would have a little more time. I was hoping I wouldn't get sick, but everything happened so fast. It was a whirlwind.

I went in again on Monday, March 16th, for a couple of hours to test software on my laptop to make sure I could do a teleconference with everybody and the client for a remote shoot. At around 3 PM, I felt a sudden, intense pain in my neck and an excruciating headache across my eyes. I decided to take a cab home and called my husband to tell him. Of course, he thought it might be COVID, but I said it was just a bad headache — probably from stress. 

That night I started a fever. The next day, my whole body ached and the headache wouldn’t go away. I called my primary care doctor and I told him about my symptoms. He asked me to assume that I had COVID and recommended I take Tylenol (not Advil or aspirin) and stay hydrated. But, he asked me to go to the emergency room and get tested if I had any problems talking or breathing. 

Some other co-workers got sick around the same time. But, I don't think I got it from anyone at work. They said the incubation period is two weeks so I think I must've been sick before that. I think I got it from being out and about. It's impossible to know. I later found out that there were quite of few people with symptoms but not everyone got tested so it’s hard to know for sure how many people had COVID.

I called 311 and connected with a doctor from New York Health Services who interviewed me about my symptoms. At first, he said, “I don’t know if you qualify to get tested.” I explained that I have a rare genetic condition called Ehlers-Danlos syndrome. I'm not technically immunocompromised, but I'm more susceptible to getting sick because of the chronic inflammation in my body. So I get sick frequently and then it always takes me forever to get over it. I also explained that I have a step-daughter who has Crohn’s disease and I was near her last week. If I have it, she would have to have to get tested because that could affect since she's on immunosuppressive therapy. So, he agreed on the test.

They scheduled an appointment for the test on March 19th at 9:30 AM at Bellevue Hospital. That day, it was cold and pouring down rain. I had a hundred and three fever. I arrived 20 minutes early and was the first one there. There was nowhere to wait and no signs anywhere.  I could see the tent in the garden behind the gate, but the gate was locked. I asked a cop nearby with a mask on, “Is this where I go for testing?” He replied, “Oh yeah, I think so.”

When I walked up, they said they weren’t ready yet. I had to wait for an hour outside in the cold with a fever before they were ready for me. The tent didn't have any walls. It didn't have any heat. Everything was wet from the rain and blowing sideways. It was chaotic. When I did go in, they had this thick plexiglass dividing everybody. But, it made it so they couldn’t hear me when they were asking for my medical information. When I was done with the intake, they told me to go over to another area, but they said they weren’t ready for me. Nobody knew what they were doing. It was the worst situation. 

I was finally tested for RSV Influenza, Influenza A, Influenza B, and COVID. I was told they would call me with the results but they also gave me a web portal where I could see them. The next day I looked and all the test results were in except COVID. All of them were negative.

The achiness spread to my whole body. I had crazy leg cramps where I couldn't sit still. And then back pain, chest pain, and chest tightness. The cough came a little bit later. I had fevers nonstop for almost three weeks. I think the weirdest symptom was an awful brain fog where I couldn't remember words. When I needed my eyeglasses I would ask, “Hand me the things for my eyes to see” because I couldn’t remember the word “glasses”. 

After waiting for two weeks, I called 311 but had no luck. After days of checking the results on the web portal, it finally showed I tested positive for COVID. The doctor didn't call me until the following day. 

There was a sense of relief. I could tell people who were near me if they wanted to get tested they could say that they were in contact with somebody who tested positive. The other thought I had was that I could donate plasma since you had to have a positive diagnosis. 

I was concerned about my husband as we share the same bathroom and sleep in the same room so I couldn’t completely isolate myself.  We have one bathroom and one bedroom for the two of us. There was no way that was going to happen. We were careful -- keeping our distance, not touching each other, not drinking out of the same glass. He would bring me food in bed and leave it on the nightstand and take it away when it was done. But, he always washed his hands. He's kind of like a clean freak that way anyway. He later tested negative for antibodies. I was actually really shocked. I thought maybe he is one of these people that is just asymptomatic. We would sit on the couch together. We'd be in the same bed. In hindsight that was probably really stupid. He probably should have just slept on the couch. 

I worried about the people living in my building, as I thought I might have exposed them to the virus. I was terrified of going to the hospital as I heard it on the news that people are on respirators, having problems breathing.  My doctor gave me some exercises like breathing in, holding my breath for 10 seconds, and exhaling, to avoid respiratory issues and doing frequent deep breathing to avoid getting mucus plugs in my lungs. So, I was vigilant about my breathing

I was starting to feel a little better and my husband was like, “Oh, I'm going to make you your favorite pizza.” And he makes us amazing Napoli style thin crust pizza. It has nduja sausage, Gorgonzola cheese, and hot honey -- so a lot of salt, sweet and spicy flavors going on. As he was making it, I didn't realize I couldn't smell it. So he puts it in front of me and we're sitting at the coffee table watching TV. I take a bite and I don't taste anything. It felt like sawdust in my mouth. It was the weirdest texture because there was no flavor. I'm like, “This tastes weird.” 

And he's like, “Well, what does it taste like?” 

I'm like, “Nothing.”

He's like, “Well, that's impossible.” 

And I'm like, “I can't eat this.” That was the first moment I realized it. And then everything I tried to eat after that was just not enjoyable. I couldn't eat. I couldn't smell. I couldn’t taste. I wound up losing 12 pounds in a week because I just wasn't eating. Nothing was good. At the end of that, I started throwing up. I spent a whole night throwing up and then I had diarrhea for the next three days. 

I knew I could not smell anything when I couldn't smell a dirty litter box. I have such a sensitive sense of smell. And I'm like, you know, I guess this is a good side effect, but you know, it was very weird. And then it started creeping back. I remember specifically because Scott was cooking something with garlic. I couldn't smell the litter box, but I could smell the garlic. It was such a strong smell. I love garlic. I went into the kitchen. I'm like, you got to stop. I'm going to throw up. It smells so strong. 

The hardest part of going through COVID was not knowing if I would ever be normal again. It just went on and on forever. Anyone who says it's like the flu has no idea. With the flu 5-7 days later, you feel better. With this, I would relapse. I would feel better for a couple of days and then I would get another round of symptoms. Once, I had no fever for 24 hours. I was so excited. I called everyone in my family. And then the day after that, I wound up with a 102 fever again and cried. I was like, “What if this never stops? What if this never goes away?” I knew rationally it would, but there's not much known about it so I got really worried.

After three weeks, I started working from home and getting looped back into projects but I couldn’t think. I didn’t know if it was from just lying in bed for weeks and not stimulating my brain. I couldn't remember things. It was really scary. But, most upsetting was not being able to have a conversation. It took a long time for me to be normal. I still didn't feel a hundred percent normal until six weeks after my first symptoms.

After recovering from COVID, I decided to donate plasma to COVID patients despite being needle-phobic. I have donated four times since then. And, by constantly donating plasma, I overcame the fear of needles. 

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September 17, 2020 update: I have a post-COVID illness my doctor believes I have because of my COVID infection. About 10 years ago I developed an auto-immune disease of the skin called lichen planus.  It started because of a drug I was on at the time and triggered a negative immune response. Lichen planus has no cure, but it's pretty benign and will "run its course" in two years.  The problem with this disease is that although it's benign, it is extremely painful, itchy, and caused lesions over 90% of my body.  I would scratch until I bled at night. I looked like I was covered in cigarette burns and had to hide my body because everyone thought I was contagious. It was the worst two years of my life.  I was also told that once you have this and recover, it will not return.

In mid-July, I started getting lesions on the bottoms of my feet and the palms of my hands. I honestly didn't think it was the lichen planus returning.  I went to my dermatologist and she said that it had returned, and believes it is because my immune system went into overdrive from my COVID infection.  This is devastating news to me because I remember the agony I was in last time. She started me on an aggressive course of Prednisone and it's starting to help a bit.  I'll be on that for a while, slowly tapering off while watching for more lesions.  Now I’m having side effects from the prednisone including numbness of the tongue and mouth. I may need to discontinue this treatment course.  I’m hoping to know more in the coming weeks but every day is an unwelcome surprise.

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TREATMENT: Tylenol, NyQuil, hot baths, Prednisone

SYMPTOMS: fever, headache, loss of appetite, loss of taste and smell, brain fog, diarrhea, vomiting, leg cramps, back pain, chest pain, chest tightness, cough, lichen planus, gastro 

Jen, 48,  grew up on Long Island and has been in New York City for about 28 years. She is a video producer creating video content and commercials for pharmaceutical companies.