The biggest challenge for me as a mother, the one-to-one aide for our son Tony, and his hab therapist has been keeping me functional while neurological evaluations and diagnostics are happening. What has been happening with involuntary movements and muscle twitches has been impacting my sleep when the medication balance isn’t working, and when that happens…it’s an ugly day with POTS that is otherwise pretty well managed by adequate sleep and lifestyle modifications. The gabapentin, for whatever reason, as I told staff at my cardiologist’s office a couple weeks ago, seems to improve overall POTS symptoms and management. But the heroes of keeping me stable at this time are without a doubt are the providers from the practice that has managed my primary care for the past 18 years.

I would very much like to express my gratitude in particular to A.N., S.A., and H.H. for their contributions to keeping me mostly functional. On the days where things have been going well, I’ve been present in school, we’ve been doing therapy, I’m getting the makeup on, and in general, just trying to “Vivir Mi Vida,” pero sin mucho reir algunas dias, desafortunadamente. I live for the hope that there will be more of that some day soon. Until then, Tony’s learning how to fold laundry independently in hab, he’s staying the full day at school, and soon we’ll be working on getting him used to riding a school bus. To the caring and supportive team and my primary care: thank you for making these things possible this past month.

Next week’s post will also be a gratitude related post, maybe by then I’ll have a book or two I want to add on and recommend. Until then, take good care of yourselves and do the happiest living and dancing of your own that you can.