My Back-story!

A painting in my house.

“It’s not that I’m so smart, it’s just that I stay with problems longer.” – Albert Einstein

For as long as I can remember, I had funky joints-sprained wrists after doing a few backyard cartwheels, knees that would buckle while running, a body that felt…different.

As a determined and active teen, I wasn’t too worried.  In fact in high school I was the first girl accepted into the “football players only” weight lifting class after crushing a push-up contest.

By the time I got to college, the campus gym served as my ‘temple’ and my place of employment.  That job and my health studies prompted an early career in the fitness industry.  Pumped (pun) and on my way…

There were detours.  A collision of events that tested my strength and further rattled my funky structure.

First was minor knee surgery that required a major rehab-and that should have warned me.  Then, I was in a car accident injuring my face, legs and spine.  A few years later, I slipped while hiking and abruptly hit the base of my spine on a sharp rock.  Knocked the wind right out of me.  (Will spare you the rest, you get the point).

Physical therapy, a cascade of medical treatments and alternative therapies would follow.  Many were helpful, a few harmful.  Despite improvements, something still wasn’t right.

Puzzled by my symptoms, certain something more complex was going on than was being recognized, I dug for answers in a medical school library (Dr. Google didn’t exist then).

That hunt and a mysterious find, led me to an experimental procedure that helped stabilize my joints for over a decade while I continued to solve the riddle.

Eventually I was diagnosed by a geneticist with a rare connective tissue disorder called Ehlers-Danlos Syndrome (EDS). 

In EDS, the glue (collagen) that holds our bodies together is defective.  Symptoms include fragile skin, loose joints that easily sublux and dislocate, poor wound healing and chronic pain.

Everything I was experiencing…

Diagnosis provided much-needed validation, but it did not offer much hope.  Information on EDS was scarce, treatment options were limited and a cure was nowhere in sight.

Naïve to the battle ahead, yet undeterred, I took healing into my own hands.  With the understanding that chasing body parts was part of the deal, I set out to heal the whole.

Fortunately my newly found geneticist had an open mind.  I was grateful to have her support, and her expertise was invaluable as the EDS symptoms progressed.

In time, I found my voice and place in the medical ‘system’ after ruffling a few feathers and taking some hits.  This system, now a team, was largely responsible for putting me back together at a critical junction.

Due to my deteriorating spine and overall decline, I was forced to leave my career in public health, sell my house and move in with family.  I weighed eighty-seven pounds, was frail and bedridden.

It took two years of diagnostics and a Hail Mary pass to convince a spine surgeon to fuse my sacroiliac joint.  It was a complex and lengthy recovery, and…a victory.

I wasn’t done yet.

SIJ surgery stabilized that specific joint, though two years out I was still severely weak, unable to walk up a flight of stairs and mostly in bed.

Me in medical bed with sweet Chico

I underwent a second surgery, this one on my spinal cord (plus a lumbar fusion) which was being pulled too tight causing some of my remaining symptoms.  Recovery was much quicker, and within months my strength and mobility improved.

Both surgeries, four years straight of physical therapy and an integrative approach to healing got me back on my feet and in my own home.  I returned to my temple…the gym, after a seven-year absence.

Unicorns aside, there is no cure for EDS today, but progress is being made across the board.  I still have a taxed system, daily pain to manage and various limitations.

Despite this, I am thrilled with my gains, grateful for the care I received, and curious what the future holds.

My key messages are to stay the course, be diligent yet flexible, and remain open to the unfolding.  “You gotta kiss a lot of frogs….”

Healing would be impossible without the foundation of friends and family, and several online groups that provided direction, resources, unwavering support and kinship.