Oathkeeper

Until recently I was a Game of Thrones holdout. A few years ago I inadvertently caught a scene where a man lures his mother into a kennel of rabid dogs for her to be eaten alive and I thought, “Mmm…pass. Hard pass.” I’m five seasons in now and can’t un-see what I’ve seen. I’m so depleted by the existence of a character like Ramsay Bolton that I’m left with two options: quit now — slightly more than halfway through the whole thing — or see it through to the end. Sound familiar?

Mayo. Mayo, Mayo, Mayo. In last month’s episode I was about to meet a bunch of new specialists and take a bunch of tests. We did so. An MRI, an EMG, a chest X-ray, a spine scan, a swallow test, a blood panel looking for 52 kinds of genetic myopathy markers, and finally an HMGCR antibody test. No new finds; everything that should be negative was negative or as expected. Two specialists at Mayo in Rochester also reviewed the samples taken from my 2013 muscle biopsy. Their assessment, “Diagnosis: 1. Myopathy, active and chronic, with minimal inflammatory reaction,” was in agreement with what Northwestern Memorial Hospital concluded six years ago.

I did learn that modern medicine has uncovered a lot more about polymyositis since my original biopsy. My new neurologist vernacular-shamed me for using that term because researchers have parsed “polymyositis” into a dozen or more subset diseases since I was first introduced to it. That last part of Mayo’s conclusion, “with minimal inflammatory reaction,” makes my case less typical. So there’s that.

My neurologist has suggested that we do a second biopsy next, this time of my tricep. A second procedure would rule out a “sampling issue” with the first one, but he acknowledged that it’s equally possible that we’ll learn nothing new.

While all of that was going on — the testing, the waiting, the ordering, the analyzing — I anchored myself in the AmpCoil. And things started to shift.

Symptoms I’ve never experienced started happening right after coiling sessions… and then they started popping up on their own without provocation from the coil (hives!). This seems to be the purpose of a PEMF device for chronic cases like mine: to align body parts to a healthy frequency over and over again until the body remembers how to do that on its own. Once I realized that I had transitioned onto this ideal trajectory with the coil, my grant was extended (thank you SO much, WFHF!!). You can dive into the details of my “shift” in part two of my self-driven case study here.

I’m not getting another biopsy right now because none of the experts who reviewed the first sample questioned its quality. With all of the other tests coming back okay (this isn’t a genetic issue, there’s no tumor on my spine, etc.), my decision five years ago to abandon the steroids and pursue alternative medicine has been vindicated. My sense of relief outweighs the frustration of there not being an obvious way out.

I’ve come too far and know too much to hit the brakes. I will finish working through the undetectable actors that are holding my muscles hostage; that is my promise. The coil, other alternative therapies, and God’s grace, will get me there. I’ve also got an appointment with a Mayo rheumatologist in September to see if that department has any new ideas.

As with any intense drama, Game of Thrones has its reprieves and one is named Brienne of Tarth. Her swordsmanship, fearlessness, and blatant defiance of traditional gender roles are undeniable. Accompanied by her sword named “Oathkeeper,” she will stop at nothing to do what she has promised to do. Brienne’s heroism is a welcome reminder that nothing can squelch the power of a determined woman… not even the strugglebus.

Thirty Won?

There are three invisible things that will destroy a chronic illness crusader:

  1. guilt
  2. heartbreak
  3. doubt

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.

Is butter a carb?

Regina George couldn’t fit into anything except sweats before realizing that her diet wasn’t working. The Swedish “nutrition” bars she was eating made her gain weight rather than lose it. Initially she questioned their efficacy but her commitment to the calorie-burning-crusade overrode her better judgment.

In February, I started taking a prescription called Mepacrine. It’s typically used to treat malaria and lupus but my doctor has seen it work for other autoimmune patients so he urged me to give it a try. I didn’t take this decision lightly because the side effects are notoriously rough but the potential for improvement outweighed any hesitation. Oddly enough, one week on it and I hadn’t felt a thing. (That was the first flag I missed: if a new supplement, tincture, or prescription works for me, I feel it right away.) After ten days on it, I woke up unable to stand or bear any weight on my legs for the first time in my life. It was terrifying.

I got a blood test and it was nearly perfect. My creatine kinase enzyme (CK) was in the normal range for the first time in six years and my liver wasn’t bothered by the harsh Rx at all. Numerically I was responding well so my doctors and I decided to lower the dose and stick with it for another month to see if my symptoms would subside. My blood work kept improving but my paralysis didn’t and the recommendation was to stay on it.

If I could scream as loudly as Regina did when she discovered the nefarious plot to destroy her body via Kalteen bars, I would have. Something in my protocol was broken and what little functionality I worked so hard to hang on to through this ordeal was slipping away. That’s when I decided to stop taking the Mepacrine. Eight days later I took my first steps since February.

My first blood test since pausing the prescription is two weeks away. I’m prepared for both possible outcomes: (1) my CK enzyme bounces back up above the normal range or (2) it stays normal, and is possibly even better than last time. If it’s #2, it will be my third consecutive month below 173 and I will have technically beat polymyositis… I’ll be in remission.

Either way I’ve still got some work left to do. If my immune system isn’t attacking my muscles anymore, what is? My doctors, acupuncturist, and the AmpCoil voice analysis are all in general agreement that there’s a virus at the crux of my paralysis. I trust this team. I trust this process. But I also trust my curiosity and will be enlisting another pair of eyes to review my case at the Mayo Clinic in Phoenix. Cautious optimism is the name of my May game so keep the good vibes coming. Onward and upward!