I’m not really big on “days”

I haven’t really looked into it, but I’m assuming the March 15th awareness day they’re doing ties into Shakespeare. Beware the ides of March. I suppose March 2025 was when I hit the threshold for long COVID (3 months in).

Regardless, I’m not big on days. My birthday is this month. I have a friend whose birthday is today. Acknowledge them for what they are, and life goes on. And by acknowledge, I mean go out, do something meaningful and fun, and life goes on. Not the annual HBD on Facebook. Not a Lexus wrapped with a bow kind of crazy capitalistic ritual. So for long COVID awareness day, this is what I’m doing. Sorry to disappoint, no luxury car wrapped in a bow or diamond jewelry.

What has happened as far as research and awarness?

I’m in a pessimistic mood as I write this. It really doesn’t feel like much has been accomplished. There is the Scripps trial, which I’m grateful to be a part of. I remember falling off the cliff over a year ago, and I’m still advocating for myself like crazy. I see and have met others online doing the same.

Furthermore, I’ve even met people hit by the proverbial long COVID bus in real life, slowly fading and not knowing what they likely have (and yes, I mention it to them). I don’t blame them, and I tell them not to blame themselves either. It’s a system of failures; you have anxiety, take Lexapro, go to therapy, and move on while on the slow decline, all the while looking exhausted while you’re conscious. Or, maybe you’re in a wheelchair at this point.

Ultimately, I don’t know about much else going on with research besides Scripps and a few non-profit efforts. I hear rumblings from the MAHA folks, but, politics aside, this health administration has been a joke more than it ever has been in the history of the United States, and nothing will come from words claiming support and empty promises to fund research for long COVID.

Every doctor visit brings new and worsening symptoms

After taking time off work at the start of my journey, or dance, as I called it, I’m still working full-time. The return was a failed success. By this, I mean I’m failing, but it is an outward appearance of success. I’m cognitively functional. Coworkers have stopped saying, “You’re fully recovered, right?” I still wear glasses and have double vision from this. I’ll be walking with a cane later this week too. The invisible illness becomes visible this year.

In the past 3 months, I’ve been diagnosed with metabolic syndrome and the adrenal thing I last wrote about. I stopped running; causing repeated vestibular failure for the benefit of not deconditioning probably wasn’t worth it. Having to make my own medical decisions and guide care while working full-time, parenting, and also advocating for my own family’s own unique medical problems is tiring and feels impossible most days. I can tell my body is shutting down. Late last year, I made the call that I would continue to do this until I died. Multiple systems in the body showing cracks at 14 months is not a promising sign.

Pass the Mayo

I listened to Mateo and his COVID is Stoopid podcast last year; he mentioned a funny and informative post about his journey to the Mayo Clinic in Rochester, Minnesota. The guy is a creative genius, in my opinion. To listen, check it out below.

Anyway, I’ve decided to reactivate enrollment in the Long Covid program at the Mayo (assuming it’s still a thing). I already live in the state and was accepted in the previous year. That came to an abrupt pause when they said I was doing 90% of what they would do anyway.

So what changed? My duct-taped care team is and has been failing me. It’s time for more coordinated, complex care. Additionally, I think my journey is pointing me to a few possible answers that may have fixes. And dismissive specialists are a barrier and not helpful. What is helpful, however, is going back on anti-IgE injections and working with a few key specialists to keep me functional. Those include physical therapy and rehab providers, asthma and allergy (the MCAS issues), and others helping me look for answers while providing treatments to keep me somewhat going.

So to you, Mateo, I say, Pass the Mayo, please. I will let you all know how it goes.

An awarness day with more days to come

I spent the day like most weekends. But I did look at pictures from vacations when I was healthy. The header at the top was on a trip to Mexico in 2006, and yes, that is a margarita. Visualizing and remembering the senses from that day bring me back to better, healthier times. Happy Long Covid Awareness Day, friends.

I hope you have done something to make today a positive one, even if it is brief.