The ghost of my hypermobile past

Three photos of Keeya doing sports

Last week, my ice skating coach asked me, “You seem pretty athletic, so did you have other issues [with hypermobility] when you were younger?”

I stared at her in disbelief, both flattered and conflicted. For the first time in my life, a coach was calling me athletic. My inner critic cackled. My nervous system ramped up to argue with her until she acknowledged my disabilities. 

Sure, I competed nationally in dog agility despite being allergic to exercise, and even appeared on ESPN as a disabled athlete. However, I certainly didn’t describe myself as agile or athletic. My circulation and proprioception were so bad, I couldn’t safely use stairs for five years. Brief exercise required impeccable planning and recovery. 

Remember, she didn’t know you before remission. You did just skate 6 days in a row, only taking a day off for skiing. Just answer the question, and brag about it later.

Ironically, part of the reason I don’t identify as athletic is because I had so many hypermobility issues when I was younger. I didn’t know much about Ehlers-Danlos syndrome until 2017, at age 31, two years after my mast cell activation syndrome (MCAS) diagnosis. My injuries were so painful, strange, and shame inducing that it was easier to believe I was bad at sports. 

Bowling and volleyball induced searing pain in my wrists. In gymnastics, I impressed my coach with a front handspring, performed it 15 times consecutively, and then couldn’t walk the next day. Similarly, I displayed a natural ability for hurdles, practiced one day with the track team, and couldn’t walk the next day. In tennis, just as I was starting to enjoy myself, I developed inflammation around a nerve between my toes. Ice skating provoked so much pain and numbness in my feet that I quit, after being accused of faking it. 

When I entered remission, I was so relieved to be free of pain, weakness, and fatigue that I launched back into all the sports without expectations. However, when I got up on a surfboard on the first try, I began to question if I really was bad at sports. 

Remission has forced me to reconcile my identity, and consequently, heal past trauma. I am grateful for all the sports I played growing up: soccer, softball, ice skating, swimming, gymnastics, dance, volleyball, track and field, tennis, and basketball. Rediscovering my love of ice skating has been one of the greatest gifts of remission. Maybe soon, I’ll even be able to call myself athletic.

Recently, I was digging through a memory box–with compassion, not sadness. I found an old letter awarding me a scholarship to college… from the local athletic association. Then I found another old letter awarding me a scholarship to college… from the local hospital. How on brand.


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New year, new me… mes

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. 

Six years

Six years ago, I was diagnosed with mast cell activation syndrome (MCAS). Although no one is happy to have a disease, let alone one as complicated as MCAS, I celebrate my Dx day, because I know how incredibly lucky I was to get diagnosed. 
 
On December 22, 2015, I drove a mere 5 blocks (because I was so inflamed I couldn’t walk) across campus from my office and paid a $35 copay with no awareness that I was seeing a world leading MCAS specialist. At the time, I couldn’t even find a definition of MCAS on the internet, let alone treatment options.  I had no idea my diagnosis would explain a lifetime of health challenges literally starting from birth (e.g. anemia, food intolerances, interstitial cystitis). 
 
Diagnosis provided so much validation, but it did not solve my problems. Calming my mast cells required an immense amount of work. Last year, I described the first five years:

  • 2016: Total destruction and despair
  • 2017: Renovating my life
  • 2018: Building a support system
  • 2019: Survival and self-advocacy
  • 2020: Dreaming again

This year, my dreams are coming true. Last week, I celebrated 6 years of diagnosis and 8 months of remission. Today, I am celebrating the launch of my first online course, Maximizing Your Medical Appointments, to help people with MCAS and other chronic illnesses.

Although on Instagram, my life looks like one nonstop gleeful adventure,  I have spent most of my free time in the past three months in front of a computer pouring my knowledge and energy into this course. I created the course that I wish I had in 2015. This information would have saved me time, energy, and money. 

MCAS is unpredictable. Continued remission isn’t guaranteed. I have no idea what next year will be like. But I refuse to waste a single drop of my glorious remission energy worrying about it. As long as I can, I will continue creating joy and hope for our community.