There are three invisible things that will destroy a chronic illness crusader:
Doubt is by far the most lethal. Despite all of the support from friends near and far (you’re the best<3), I’ve still been doubted. Doubted by the smartest of doctors, family members with the best intentions, physical therapists, neighbors, you name it.
Early on in this journey, I anchored my decision to defeat polymiositis in science and rooted it in common sense. I put that decision in a bulletproof safe. I installed an impenetrable force field around it. No one’s skepticism gets in and none of my confidence ever leaks out. It’s how my mind and spirit have survived the war within my body for so long.
The last time I posted, my first trip to Mayo was up next on the calendar. Going to meet a new doctor at the top ranked research hospital in the country made me nervous but no less committed to my mission regardless of how it went. Luckily it couldn’t have gone better!
I spoke for over an hour as the doctor feverishly took notes. He looked at my Excel sheets, labs, and was familiar with “alternative” treatments I’m using (acupuncture & PEMF). At the end of the appointment I asked him what he thought.
“I want to take a step back and completely re-do your diagnosis,” he said. “I’m ordering every relevant test: labs, MRIs, X-rays, nerve conductivity, etc. I want you to see a neurologist, rheumatologist, an otorhinolaryngologist, and a physiatrist here. I want to hear their unbiased opinions and look at all of the new data. We’ll decide where to go from there.”
From his office we went one floor down to the Mayo lab where they drew more vials of blood than I’ve ever had drawn in one sitting. An hour later I got a notification that my Creatine Kinase results were in: 118. This marks the third consecutive month it’s been normal so according to my blood, I no longer have polymyositis.
Results continued to flow into my inbox without any alerts of abnormalities. No deficiencies, no outliers, no alarms. Suddenly I felt a massive surge of self-induced doubt flow through me for the first time; my thoughts took off before I could stop them. ‘How is everything normal?!’ ‘Why don’t I feel normal?’ ‘Why can’t I move?’ ‘If Mayo can’t find anything wrong with me no one can.’ ‘I’m fucked.’ ‘If we don’t know what I’m up against, I’m fucked.’
It was a full blown panic attack complete with a Kim K. ugly cry. A few days later triathlete/Lyme fighter, Angela Naeth, reeled me back in with her recent article for Triathlon Magazine Canada. “A good mental mindset starts with self-belief. Self-belief is the core of who you are. You have to believe in yourself first. If you don’t, that’s when everything falls apart.” Real talk: I was due for that breakdown. I won’t apologize for letting a ridiculously difficult, agonizingly terrifying, frustratingly elusive, health crisis get to me after six years of keeping my shit together. But Angela is totally right: my belief in myself is the core of who I am. And I am the problem solver who was built to beat this — whatever “this” is.
I’m spending my first week as a 31-year-old being scanned, stabbed, and analyzed at Mayo. And there’s truly no place I’d rather be. I’m most eager to meet the neurologist who will likely be able to tell me where I stand with the polymyositis once and for all (remission?!). If there were ever a year for my birthday wish to come true let’s hope it’s thirty won.