Episode 45 is an overview of the podcast this month, my personal life living with long COVID, and long COVID news. In March, there was a lot. Here’s a quick overview, but I encourage you to tune in for the full conversation.
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Highlights from the Podcast: Advocacy, Insights, and Everyday Realities
This month I sat down with Dr. Jean Storm, who shed light on how long COVID often goes unnoticed in nursing home settings. Her reflections on advocating for aging individuals were both practical and deeply personal—especially for anyone helping loved ones navigate care.
I also spoke with occupational therapist Amy Mooney about sensory processing challenges after COVID—how something as simple as sound can become overwhelming. Her take on sensory integration therapy helped me reframe what recovery might look like at this stage.
Later in the month, we hosted a Substack livestream to talk about medical appointments—how stressful they can be, and what to do when something doesn’t sit right. The honesty in that conversation—and the shared experiences—really reminded me how much community matters in all of this. Subscribe now to participate in the next Substack live.Subscribe
The Policy Landscape: Setbacks and Signs of Hope
March brought tough news. Federal funding for medical research, including long COVID, was significantly reduced, with 10,000 jobs cut across the CDC, NIH, and FDA, and several grant programs cancelled. There are even talks about shutting down the Office of Long COVID Research and Practice.
Still, there were glimmers of progress. Thanks to the persistence of groups like the Long COVID Campaign and The Sick Times, and calls from constituents to their government reps, some funding was restored. It’s a testament to what advocacy can do, even when the system feels stacked against us.
At Home: Moments That Mattered
In March, my family celebrated Ramadan and Eid. Ramadan is the Muslim tradition of fasting every day for about 30 days, abstaining from food and drink from dawn to dusk. I didn’t fast this year because I am ill. Like using any disability accommodation, this was a logical decision, but for me (like using any disability accommodation), it stirred up some complicated emotions—feelings of loss, of missing who I used to be. But there were also sweet moments. My kids enjoyed wearing their Pakistani clothes for Eid services, we decorated our hands with henna, and I did what I could to create a joyful space in our home. It wasn’t the Ramadan of my childhood, but it was meaningful in its own way.
Unfortunately, I’m not the only one in our family who has been ill. My children have been sick with colds (so far no COVID or flu), and keeping up with daily life while trying to manage my own health was a real juggling act. I am very concerned about the air quality in my children’s schools, compounded by growing class size and limited resources. In addition to difficulties upgrading HVAC systems, our district has a staffing gap in janitorial services. My husband and I recently made a big decision regarding school attendance for one of our children, which I may share in the future. Needless to say, I have attempted to engage school officials about infection control, but there are many obstacles. I look at Joseph Allen’s work on healthy indoor air quality as reference. Here is an interview of Allen with
Eric Topol on Topol’s GroundTruths podcast.
What’s Been Helping
One of my favorite podcasts has a recurring segment where the hosts share something they’re enjoying, and I’m inspired to do the same. Here are a few things that are making me happy.
- A Washington Post piece about Heather Stone and the CureID platform gave me a boost—it’s a tool for sharing off-label treatment experiences, and seeing those efforts gain traction feels quietly revolutionary. It was also wonderful to see Heather’s hard work amplified. She’s a gem, and her mother, the trailblazing infectious disease physician Judy Stone, is pretty amazing in her own right. Share your experience with long COVID treatments and explore what others have used on the CURE-ID platform.
- A new TV show, a murder mystery called The Residence on Netflix, is just the right mix of smart, camp, and intrigue. So fun.
- I’m also leaning into little comforts from my closet. I’m inspired by a trend called dopamine dressing to dig out a bold sweater or sparkly earrings to wear even if I’m home all day. These tiny choices bring a spark of light on tough days. They don’t solve everything, but they help reintroduce fun and play.
You can listen to Episode 45 wherever you get your podcasts, including here on Substack! If anything here resonates—or you just want to share how you’ve been—I’d love to hear from you. You can always reach me at longcovidmd@gmail.com.
Until next time.