Hi Rachel,

Thanks so much for your kind note!

I started with these symptoms very suddenly...seemed to dovetail with a UTI after a medical test and the prescription of Cipro to combat it. That was back in the fall of 2019.

I went to Mayo, Rochester for testing and diagnosis. I've been returning each year for repeat testing, but nothing much changes.

I believe I went to PRC in October of 2020. Like you, it was very helpful for me: I learned so much. It has been a challenge to apply what I've learned, though: I tend to fall back to previous patterns of behavior. The dreaded catastrophizing, searching for the silver bullet that will return me to better health, etc.

Nevertheless, I do catch myself and have all sorts of tools to work with. I use Headspace.com for meditation daily, have a wonderful spouse and lots of friends, and work part-time now in my retirement. I am a very active person physically...I love to hike, ski, bike, trout fish, garden, petc...which is good and yet so easy for me to overdo...paying for it for days afterwards.

I also had an aortic valve replacement surgery (not the tavr type!) in 2022, which has complicated things a bit.
I continue to go to cardiac rehab twice a week...most of the same exercises we learned at PRC.

I had a PRC day long follow up refresher on my calendar, but then the heart problem emerged, so I haven't actually done it. Have you? Did you find it helpful?

For about a year/year and a half, I was in regular contact with 3 of
my classmates from
PRC, but that eventually faded. All of us really became close during those 3 weeks, right? Amazing--different ages, genders, conditions--but everyone really supported everyone else.

I didn't have anyone in the group with my particular symptoms, so it is great to make the connection with you. I know I, too, have CSS. All the hallmarks of personality--perfectionism, childhood trauma, hypervigilance, etc.

But a day at a time!

Thanks again for writing...and mentoring. All the best to you.

My name is Dave, incidentally.