At the beginning of this month, my partner and I attended a super-spreader event — GenCon. We masked the entire time, unless we were eating. But, those one-way protections were still not enough to save us.
On the evening of Saturday the 3rd, while still there, my partner tested positive for COVID after only having minor runny nose symptoms and a tickle in their throat.
We drove home overnight. On Sunday, we got them to urgent care for a script of Paxlovid.
Knowing that my positive test would come within days, I spent some of my energy Monday to wrangle a Paxlovid script for myself, which I started on the 6th. It was a good thing, too, as my symptoms really hit hard on the morning of the 6th.
I woke up with a gunky throat, small cough, and some intense chills.
The bulk of my infection was relatively normal. I napped here and there. I had some nasty heartburn.
After sleeping 18/24 hours Saturday and finishing my Paxlovid Sunday, I was finally feeling better — not 100%, but probably 75-80% physically and 90% mentally.
I was very grateful my illness hit a couple days following my partner’s, and that their mom watched the dogs for a few extra days.
By Monday the 12th, I was asymptomatic and testing negative. I still rested a lot over the week, as to not tempt the long COVID deities.
On Thursday evening, I was supposed to fly out to Atlanta to attend the National LGBTQ Health Conference. I woke up that morning with a runny nose, which I had attributed to missing a dose of allergy medication the night before.
But, after hearing about someone else dealing with possible COVID symptoms, I took a home test… which was heavily positive. That line was THICK. A second home test showed positive, too. After a few minutes of crying, I headed over to urgent care for a confirmation PCR test.
And, of course, I’m in the 20% of people who get rebound COVID.
I canceled my travel plans.
Folks at urgent care were really delightful, and I had wonderful interactions with everyone there. We decided against another round of Paxlovid, mostly because there isn’t much evidence to prove that it’s helpful. The real trick is to just treat and monitor symptoms.
I spent a little over an hour canceling my travel plans and preparing for another several days of isolation.
By the evening, my left eye was leaking sinus fluid along with my left nostril. My left eye was also beginning to swell.
Halfway through the day on Friday, I began to itch all over. By the evening, I figured this was a COVID-related rash, as that’s not uncommon in rebound infections especially. It was bad enough that I had to take dye-free Benadryl to help. My partner drew me a nice, warm bath to relax in for a while, too.
When I woke up at 3:45 am, my Benadryl had worn off… and my whole body was swollen and covered in rash. And that was after two regular antihistamines, adding in another allergy med, dye-free Benadryl, and using my Benadryl anti-itch spray.
My left eye was horribly worse, too.
After lying awake on my couch for half an hour waiting for another Benadryl to kick in, I began to really grapple with the idea that this rebound COVID infection had sent me into a full-on Still’s Disease flare-up.
Knowing that COVID can cause cytokine storms — and that’s essentially what Macrophage Activation Syndrome is — I had to get medical attention.
I wasn’t bad enough to feel like an ER trip was warranted. So, I set up an urgent care appointment Saturday at 10:30 am. And, I’m glad I did. My rash and swelling continued to progress through the early morning hours. My skin felt bruised because of the inflammation, and my left eye was so swollen that I could not easily find my occipital bone.
For the first time, someone at urgent care KNEW Still’s, and agreed that I needed a prednisone burst. He even asked what dosage I usually start at.
As a rare disease patient, I’m so used to being dismissed or having to completely explain my condition(s) to providers. The fact that I didn’t have to do that felt revolutionary. My Quality of Life went from 4 to 8 over the course of a few hours.
And, honestly? I wanted to cry.
Within just an hour of starting prednisone, my eye got less puffy and I was generally less swollen. My fingers, hands, and wrists were still swollen, but much less so. And, most importantly, I was no longer covered in rash (although I still had a few spots).
When I woke up Sunday, after a full night’s sleep, I was covered in rash again. Thankfully, it was nowhere near as bad as the day before. It easily dissipated after I waited for steroids to kick in. Unfortunately, I developed more congestion symptoms again, including some throat gunk.
With it now being Monday, I’ve begun to cough up more phlegm. This is, in part, because I’ve started to take Mucinex. This mucus is far too thick to cough up without help, at least for me. My Still’s rash is still present, although it continues to fade more a few hours after taking my prednisone burst.
I’ll continue to update here with my experience over the next few days and weeks as necessary.
Early September Update
I continued to test positive for COVID until August 25. The last few days were very heavily taxing on my mental health.
My dysautonomia symptoms have drastically returned, too. Not that they were really gone, but they were relatively rare. Now, we’re back to nearly daily incidences of symptoms.
My Still’s Disease is also more active. I’ve had more occurrences of rash, especially following showers.
What’s worked well
Your mileage may vary, but this is what has been helpful for me:
- Having a caring partner, ready and willing to help with literally anything and everything
- Seeking medical help quickly when needed and being prepared to advocate for myself as needed
- Mucinex
- Dye-free Benadryl and anti-itch Benadryl spray
- Extra anti-histamines (for me, this has meant adding loratadine and the above mentioned Benadryl to my already-daily cetirizine and famotidine)
- Sitting on a plush blanket to not further anger rash-covered body parts
- Making sure I eat a little bit every couple of hours, regardless of how hungry I may be
- Resting in a warm bath
- Our dogs, who have spent time kissing where my rash has been and cuddling me to help me feel better
Regardless of whether or not you’ve had COVID yet, please mask. Continue to take other precautions as well, including not meeting in groups even outdoors without masks, washing hands and sanitizing them often, switching out KN95 masks for new ones regularly (at least daily if possible), and possibly using CPC mouthwash and nasal sprays.
Infection numbers are horrible right now and have been for a few weeks.
People aren’t even testing, thinking they only have allergies or colds. Even for the most healthy person, this is dangerous — but incredibly more so for those of us with underlying health issues.
