Disability Pride Month - How Did we Get Here? (and reflecting on 35)… PART 1

It took 5 years. 

5 SOLID years of advocacy and pushing to actually get a diagnosis.

Summer 2020 - Bigfoot and I were both looking for the answer….

Now, that’s not when my pain or symptoms started. Oh no.  I could argue that my symptoms and pain started while I was still in school… like early school… we’re talking grade school (Growing pains that felt like more than growing pains, CHILDHOOD acne, lifelong sleep issues, gi issues, emotional dis-regulation,  headaches and migraines staying young, cardiac symptoms that evolved in high school, etc etc etc.l)

5 years ago is simply when things progressed to a point where they were no longer tolerable.  I couldn’t take any more. 

Summer 2020 - At Performances

5 years ago while I was performing, my heart rate would spike to the point where I was gasping for air, my wrists hurt to the point I could barely hold my microphone, my fingers were swollen so badly I couldn’t hold a pick well, I was so dizzy I’d have to stop moving and hold onto things, I was walking and moving with a limp, I couldn’t remember the words to POPULAR songs I’d been singing for years, and worst yet, I couldn’t remember the names of my best friends while I was staring straight at them. 

5 years ago, my body was shutting down. 
I was at my fittest but also getting more sick every day. HOW?

We ran bloodwork, we did X-rays, and came up empty handed.

Per my request, my doctor sent me to neurology.  It was the neurologic symptoms that scared me the most.  Forget the pain.  Forget the swelling.  Forget the cardiac issues.  Not remembering the names of the people who were closest to me. TERRIFYING. 

July 2021 - I was so sick and broken down that you could see every one of my ribs. THIS is the body my neurologist saw.

4 years ago, I finally saw a neurologist.

At the end of an hour-long, comprehensive exam with a neurologist and fellow…After an hour of watching me struggle, watching me limp down the hallway, listening to all of my symptoms, seeing me sob in pain… my neurologist wrote in my chart that my “pain symptoms had resolved” and that I needed neuro-psych testing for ADHD.  

NONE of my concerns were addressed. Not one. So I requested to see rheumatology. 

Rheumatology ran tests, did a physical exam, their whole thing. They said, “It’s not lupus” and “your arthritis hasn’t gotten worse”. 
Cool…. not helpful and when did I develop arthritis?  Are you telling me I have arthritis?
I decided at least while I there to show her a picture of my swollen, red, hot hands.  At this point I had done so MUCH independent research I felt confident suggested that it may be erythromelalgia. 

She looked at me silently, then at her resident. They both walked over to the computer, typed “erythromelalgia” it in their search bar, and looked back at me blankly. “I think it’s erythromelalgia”. *insert face palm*….

Really?  I know it’s rare, but it’s not THAT rare. I answer, “Great.  What do I do for it?”.  Their response gave me every reason to not go back, “We’ll refer you to dermatology”. 

Erythromelalgia flare in action! - Yes, they are hot, no there isn’t a common cause for all my flares.

My inner rage built and built until I finally reached my car and let out a guttural scream followed by a sob. The man walking behind my car definitely stopped and tilted their head uncomfortably. Sir, at least I waited until I was in the car.  

Here’s the deal…. Erythromelalgia is not a dermatologic disease. It might look derm related but it’s not. It’s just not.  And when put in the context of ALLLLLLLLL of my other symptoms is a big tip off that there’s something else.  But even from my very little research I knew dermatology would send me right back to rheumatology.

And guess what… when I saw dermatology the next month, they said…., as predicted,“We’re going to send you to rheumatology.”  

Of course you are.  

OF COURSE you are.

I asked my primary doctor what we could do for ALL of the things.  I was striking out with the specialists so I figured, let’s take what we’ve gathered back to my primary and try again.  His suggestion: since my pain was fibromyalgia like, he recommended Cymbalta.  And finally, I got some relief.  Finally. 

I was able to hold my coffee again without crying. I was able to turn door handles without wincing.  I was able to remember more. I was functional.

On stage 3 summers ago.

But functional is a FAR cry from thriving. I was able to open doors again and hold my dinner plate, or even CUT my dinner, without sobbing… I was functional but not thriving.

3 years ago, I was in the middle of a worsening battle with a never ending (2 year long) headache.  That became the worst of my symptoms, at that point.   It wasn’t my standard seasonal, sinus, or allergy headache. It wasn’t one of my migraines.  This was a steady, never-ending pressure, like a spear going through the back right side of my head through the front of my eye.  I wore pink glasses to help with the light sensitivity, pounded excedrin all day every day, and tried desperately to simply exist.  I told my primary doctor,  “I think I have a connective tissue disorder.  Between my headache, other pain, neuro symptoms, vascular stuff,  etc, this is really starting to feel like something bigger”. 

DENIED. 

My doctor didn’t see my body as being hyper-mobile or sick enough to have a connective tissue disorder. Instead, he ordered an MRI of my head to at least make sure the never-ending headache wasn’t due to brain cancer or a chiari malformation.

An MRI and an intense eye exam later, all we could tell was that I didn’t have brain cancer (cool), didn’t have a chiari malformation, and that I had a little extra pressure in my right eye. *insert face palm*.

I was recommended to a specific headache specialist in St. Louis who, of course,… denied me. They said, NOPE. We don’t have space right now. So, back to primary I went.

Picture from spring 2023 after 2 years of the never-ending headahce. This is probably the 4th pair of pink glasses I was on.

In a desperate plea and last ditch effort, I asked:

“Hey doc.  Can we try muscle relaxers?  I think my headache could be due to extreme muscle tension”…. Perhaps due to cervical instability and a connective tissue disorder that my muscles try to compensate for (the part I didn’t say).

Doc: “Sure!  We’ll try these lower dose ones that you can function on” (aka NOT Flexerol). 

Katey tries the “you can drive on these” muscle relaxers and FINALLY gets some relief along with actually being able to get comfortable enough at night to actually fall asleep and stay asleep for more than an hour or two for the first time, maybe ever.. 

But what happened when I started sleeping well…. Well, it was unsettling.

My ribs started to slip, to subluxate, and to full dislocate… when I was SLEEPING. 

My body was trying to stay awake and reposition all night every night in order to simply keep itself together. GASP.

So , “high ho, high ho, back to the doc we go”. 

… stay tuned for part TWO.