My Never-Ending Story: Surviving AS, RA, and COVID-19

October 20, 2020

My name is Jessica Thomas, and I am a wife, a mother, a daughter, a sister, a friend – and, as of August 2020, a COVID-19 patient and now, survivor. I am also a co-leader of the Chicago Spondyloarthritis Support Group with the Spondylitis Association of America. I was diagnosed with ankylosing spondylitis in March 2018, and I tested positive for COVID-19 in August. I believe it is very important to share my story with others who have spondyloarthritis (SpA) and with those who take immunosuppressant medications.

August 20^th turned out to be an important day in the timeline of my infection with COVID-19. I remember going to bed the night before, and not feeling great. I woke up that Thursday morning and was in terrible shape. My headache stretched from my eyebrows down to the middle of my back. It felt like a knife was under my right shoulder blade, twisting into my lung. I assumed it was a horrible arthritis flare, but acknowledged I had never felt like this before. COVID-19 didn’t even cross my mind. Why? I had no fever, and I had no cough.

According to the CDC, people with COVID-19 have reported a wide array of symptoms, ranging from mild symptoms to severe illness. Symptoms may appear 2-14 days after exposure to the virus. 

I called in sick to work on the 20^th and was in bed all day. I could barely lift my head off the pillow and I was exhausted. All of the normal pain medications I would use for my arthritis were not working. I took Tylenol, ibuprofen, gabapentin, and diclofenac. (Additionally, I receive Remicade infusions every eight weeks.) Nothing was breaking this clenching pain. I am rarely so sick that I truly cannot do anything, but this was one of those days. I decided to try and sleep it off.

Now, when we look back as a family, we see this week differently. My daughter remembers her allergies bothering her. None of us had much of an appetite, and food wasn’t tasting good. We were tired, but of course we are tired, we are a busy family. As someone with an autoimmune disease, I am very in tune with the fact that there are good days and bad days. I know that one day I might feel terrible, but the next day I am fine. I was really expecting this horrible migraine to be just that, and I would be back on my feet the next day.

August 21^st, my children were at their dad’s house. My daughter called me to say that my son was not feeling well and had a low-grade fever. I told her to watch it and check back in with me. My son remembers feeling suddenly very hot and just wanting to sleep. He has very little recollection of that weekend. My daughter continued to check his temperature, which was up to 104 degrees in the matter of an afternoon.

Possible symptoms of COVID-19 noted by the CDC include: fever or chills, cough, shortness of breath or difficulty breathing, fatigue, muscle or body aches, headache, new loss of taste or smell, sore throat, congestion or runny nose, nausea or vomiting, and diarrhea.

I was in contact with my ex-husband who left work and took the kids to the Illinois Department of Public Health free testing center. Our first thought was not COVID-19. I wasn’t feeling great, but I was better than the day before, so I figured we were all getting seasonal allergies or maybe colds. The three of them went to the testing center. At this point, my daughter and her father were largely asymptomatic. This was a Friday.

I felt much better over the weekend. I was tired, but nothing out of the ordinary for someone with autoimmune diseases. On August 24^th, my ex-husband called to inform me that they all received positive test results. I realized that I needed to get tested, and quickly.

I texted a friend, who recommended a few places. I was hoping to get a rapid test. My first stop was an immediate care in my town. They were out of tests. I then went to a drug store in my town and they would not test me because I didn’t have a fever. I drove to another immediate care in the city of Chicago and they were out of tests. I was told at both immediate cares to come back the next day, around 6:00 a.m., to “get in line.”

I was starting to get really concerned. I finally headed to another drug store in Chicago. I was worried about how long the results would take, but they told me two to four days. This still seemed crazy to me, but it was the best shot I had so I had the test done. Well, I actually did the test to myself. I drove into the pharmacy drive-thru, where I was greeted by a nurse on the other side of the window. She passed me a testing kit and walked me through the process of doing the brain scrape… on myself. The test was uncomfortable, but easy to follow. I put everything back into the testing kit and passed it back.

This was a Monday. I would not receive my results until Friday morning. I chose to quarantine all week, but by the time the results came, I was already very sick.

For me, the darkest days were day 7 through day 21. I never had a fever or cough, but I am convinced I had every other possible symptom. During this time, I could barely lift my head off my pillow. Everything is a blur, and I remember very little from this period. My head was in so much pain, and it radiated around my skull and down my neck and back. Lifting my head would make me so dizzy that I vomited on a few occasions. I also suffered other horrible GI issues that kept me up at night and lying down in the bathroom during the day. I passed out twice from pain. Nothing would touch this pain.

Certain symptoms warrant immediate medical care. Seek emergency care if you experience: trouble breathing, persistent pain or pressure in the chest, confusion, inability to wake or to stay awake, bluish lips or face.

On two different occasions I had a gallbladder attack. I have had these before, so I recognized the pain. I had a kidney stone in my right kidney in January 2019, and that kidney suddenly ached again. My throat was sore and my glands felt sore and swollen. My head was tender to the touch and burned inside. My muscles ached, my joints hurt, and I had a horrible case of the chills and night sweats. Around day 7 is when I lost my senses of taste and smell – which I still do not have back as of this writing on October 4^th. I often felt like a knife was stabbing under my right shoulder blade. I have since learned that could have been lung-related, but thankfully my oxygen levels remained normal.

This was an incredibly difficult time because we all were sick and so contagious. I tried to work through it for a few days and ended up having to throw in the towel and take about 6 days off. I returned by only working half-days because anything beyond that was unmanageable. I say this as a person who always works from home and can work from my bed if I have to. My vision has been impacted. I’m exhausted. When one symptom lightens up, another one comes along and knocks me off my feet.

Today marks six weeks since my positive test and my seventh week of being symptomatic. I sleep so poorly because of this disease. Something (a headache, stomach pain, nausea) is always waking me up. As a family we have been in and out of local hospitals and we have had to see many general practitioners and specialists.

The final of my many appointments was a trip to my internist. He is young and optimistic. I so needed his optimism. However, he was also incredibly candid. By the time I saw him, I was five weeks out from my test. He told me that I was heading into the “COVID-19 sequela.” The tail of the virus. Not everyone is blessed with this tail, but long-haulers are. I asked him when I should realistically expect to be on the other side of this. He told me, “Hopefully by the holidays.”

Needless to say, my story is still developing.

There are many things I have learned from this experience, and that I am continuing to learn. The hard part of catching a “novel virus” is that every tool a doctor has at their disposal is experimental. In the case of COVID-19, it impacts everyone differently, so treatments vary greatly from patient to patient. The virus seems to affect people with underlying health conditions much differently than people without, but I don’t think we are in a place yet to speak in absolutes. My hope is that we can follow the directives of science and medicine to create a plan that best supports the health and wellbeing of all Americans and those suffering around the world.

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