12/1/2021 Clinic note:
35-year-old female here for end of year evaluation.
Chief complaint is apathy towards bills and household chores.
Patient demands refill for doxycycline but is otherwise pleasant.
Exam is unremarkable. Patient performs unsolicited arabesques.
CBC and metabolic panel values have improved. Patient attributes this to her “nutrient dense diet,” which includes cheeseburgers, several pounds of tomatoes, and champagne.
Patient ask for letter of medical necessity for surf school in Costa Rica. Denied request. Offered preemptive orthopedic referral.
Okay, maybe I wrote that myself, but I DID send it to my doctor–actually, all of my doctors–on the back of my 2021 holiday card. I want them to know how profoundly life changing adequate MCAS treatment can be.
If only I could send them clips of my Finding My Range interviews as well. My first interview was recorded in November 2020, before my remission. My second interview was recorded in November 2021, as I was celebrating 7 months of remission. You can see and hear the incredible difference. I completely underestimated the impact of inflammation and pain on my personality. It is a great reminder to be gentle with ourselves and others when our bodies are hurting.
If you haven’t watched the latest episode yet, check it out to hear more about how I discovered I was in remission, how remission has eliminated my subluxations and dysautonomia, and how “remission” of symptoms is probably more common than we recognize.
After recording the latest episode, new research was published offering clues about why doxycycline may have eliminated my hEDS symptoms. Read the study. My case is encouraging this research team to think about a clinical trial for EDS. Of course, there are a lot of variables, but I am so hopeful my experiences and documentation will help lead to important discoveries to help so many people.
Of course, 2021 wasn’t perfect. My annual resolution is “more jokes, less pokes.” Although I only needed one IV for MCAS before remission, I was poked for adrenal crisis, skin cancer, and vaccination. Unexpectedly, remission made me so wiggly and excited I couldn’t sit long enough to perfect my one liners. With the help of winter, I am finally able to read and write again… in short intervals between adventures.
My 2022 resolution is: New year, new memes. (Why the hell would I want a new me?) I have no idea what the content will be; I just know–with this glorious body–there will be no shortage of inspiration. I looking forward to laughing with you in 2022.