So, It’s Not COVID. Then What the Hell is Wrong with Me?

AUTHOR’S NOTE: This is part 1 in a series of blog updates on my health status.

On day four of high fever, muscle aches, and chills so violent I thought I’d break a tooth I laid in bed composing a text in my mind. I needed to send someone in my family my list of wishes. No burial. Cremation. Half of my ashes should be spread over the field south of the main farm, the rest scattered in the Pacific Ocean off the Sonoma Coast. The Icelandic trunk needs to go to Megan. I wanted someone in my family to have all of this in writing so there wouldn’t be any additional drama for my husband to deal with after I was gone.

Yes, at the point, I was convinced I’d be another number on the death toll for COVID-19. I’d been tested for it the day before and was certain that’s what was causing all my suffering. The next day the results came back. Negative. Okay, so now what?

Ironically enough, my symptoms started on Good Friday when I woke up with a very stiff neck, not the kind you get from sleeping in an awkward position. I thought it was strange, but I went about my usual business that day. The next day I noticed a sore throat and cough, but I was doing extensive gardening and yard work and chalked it up to seasonal allergies.

That night I had the chills, but I thought it was probably due to getting a mild sunburn while doing yard work. More likely it was the first night I had a fever.

On Easter Sunday I had no energy, but again I made excuses. “Oh, I’m just exhausted from all that yard work,” I thought. And again, that night, I had chills. It wasn’t until the next day that I finally took my temperature—100.3. Hmm, that’s not good. And from there, things got worse.

I contacted my doctor that Wednesday, April 15. I got a short video appointment and instructions to get tested for COVID-19, which took place in a drive-thru urgent care clinic in the first floor of a parking garage. The experience was cold, surreal, efficient. The nasal swab was insanely uncomfortable. Nerves were sensitized in ways I didn’t think possible.

The best part of a drive-thru urgent care clinic is that you don’t have to leave your car. You can sit there and let the nurses and doctors come to you, which is great when it’s hard to move. I just had to be driven home and then helped back into our house and back into bed.

My body temperature followed a rather predictable course that week, starting out normal or slightly elevated each morning, and increasing as the day progressed. At bedtime, it was typically over 102, making sleep an unattainable goal due to the muscle pain associated with the high fever.  

Oh, and the headaches. I typically get 1-2 headaches a year. By the time I was composing the text message to family that never got sent—I couldn’t decide which of my siblings could handle receiving a text like that—I’d had a severe headache for six days. It felt like my brain was too big for my skull. And the headaches got worse at night, another reason why sleep was so elusive. But oh, the naps I could take during the afternoon.

That Friday things got worse. I woke up with severely swollen hands and feet. I remember looking at my left hand, marveling at how shiny the skin was on my huge thumb. I couldn’t walk and I couldn’t use my hands. Thank god for my husband and all he was and is willing to do for me. A call to the doctor’s office gave little useful advice. “Just increase the ibuprofen to get the swelling down.” Really? REALLY? I gave up, too tired to fight for better advice.

But the next day the pain was too intense in my hands and feet. My husband got me into the car and off we went to that glorious drive-thru urgent care clinic, this time to be seen by a physician who listened to all my symptoms and issues. The first physician I’d seen there seemed to be scared of me. This physician, perhaps because he knew I’d tested negative for COVID-19, was willing to spend a lot more time talking to me through the passenger window of my husband’s car. I was cozy under a blanket and comforted by that amazingly compassionate doctor’s car side manner. He prescribed prednisone for the hand and foot joint swelling and advised me to start taking acetaminophen or ibuprofen every three hours. At the end of the visit the physician said, “You know, the COVID-19 test has a 30% false negative rate. All your symptoms lead me to believe you have it. You’re going to feel pretty bad for a few more weeks, but because you don’t have any respiratory symptoms, I think you’re going to be fine.” So, I was back to believing I had COVID-19.

Once again, I went home and went back to bed, setting alarms that reminded me when to take all the medications. Prednisone is great for reducing inflammation…and terrible for blood sugars. My hands and feet started feeling better within 24 hours, but the next four days were hell for blood sugar control. Even after 42 years of living with Type 1 diabetes I was ill-prepared to deal with the surge in blood sugar while on the prednisone.

By Monday, April 20, the fever was gone, but I still had sore hands, sore feet, no energy, and skull crushing headaches. This continued for the next week. On Monday, April 27, I called my doctor again, desperate for relief from the joint pain and headaches. He recommended an office visit, which required four temperature checks to go from the parking garage to his fourth-floor office. Along the way my husband and I got stickers to show we’d passed the temperature inspection. I kept thinking how much my six-year-old self would have loved all the stickers.

My doctor ordered a battery of blood tests to rule out conditions like lupus, rheumatoid arthritis, and parvovirus. He too thought it was COVID, so he ordered an antibody test along with a CBC and a few tests to measure inflammation.

While waiting for all those test results, I developed a new symptom on Saturday, May 2—left-side facial paralysis. This time the drive-thru urgent care clinic wasn’t the answer. I needed the ER. I was scared I was having a stroke. Really scared.

Scott dropped me off at the ER and went to wait in the parking garage. The ER wasn’t allowing any guests to accompany patients. I had to wait in a line for the temperature screening, but when I said with my slurred speech, “I think I’m habbing a stoke,” the process got expedited. I was in a gown and in a room—room #13—within 15 minutes. A doctor ordered a CT scan and blood work. Within two hours I was assured it wasn’t a stroke, just Bell’s palsy. “We’re going to prescribe prednisone and an anti-viral drug.” Great, more prednisone. “It’s strange,” he mused, “You’re my third Bell’s palsy patient this week. I typically see less than one case a month. There must be a new virus going around.” WHAT? THE? FUCK?

So, it’s Monday, May 4 today. I’ve been on prednisone for 48 hours now, and the facial paralysis seems to be getting worse, not better. It’s difficult to talk. I can’t drink without a straw. Even chewing is challenging. I’m a bit depressed at this point.

My doctor called me early this morning to follow up on the ER visit notes in my chart. He also provided updates on blood work. “Your COVID-19 antibody test was negative. I’m going to refer you for more diagnostics and a specialist to see if we can get ahead of this virus, whatever it is.”

So, tomorrow, I’m going for an MRI of my brain with contrast, and I have a referral to an infectious disease specialist. I’ll share more information in another blog post when there’s more information to share.