She Ready

I’ve wanted to be a lawyer since I was 8 years old— I even tried being a poli sci major for ten minutes in college because that’s what aspiring lawyers do. Later at Facebook I got the persuasion side of law, the constant changes of tech, and the thrill of completing a successful campaign with brilliant friends. Everything I craved was in one place so changing course voluntarily wasn’t necessary.

After I got sick I thought about grad school again. I quickly learned about the barriers to entry for disabled people. Online graduate programs hardly ever offer scholarships. There are close to zero private scholarships specifically for disabled people beyond the undergraduate level. There is no way to attend law school online (yet). It didn’t look good and it felt even worse; my body isn’t moving forward and now my brain can’t either?

My desire to go back to school doesn’t come from being bored or needing entertainment. Being this sick and actively trying to reverse it is a full-time job. It takes four hours just to get ready for the day, I manage three caregivers, a supplement/med protocol that would make your head spin, and am constantly researching to find a cure for a disease that no one else cares to find… and I’m doing it with symptoms and without energy. But that will change someday and I want to be ready to make a difference in the world when it does.

The pandemic put the field of public health on my radar for the first time. I checked it out more thoroughly and realized that everything I’ve been through has uniquely prepared me to excel in it. Research, promoting health, and using data to do it are right up my alley. 2020 showed me just how closely law, the criminal justice system, and public health intersect. After searching dozens of Master of Public Health (MPH) programs I found one ranked top 20 in the country that considers online students for scholarships. I got an application fee waiver ($150!), applied, and got in. I start next month!

Funding is tbd because my school only awards scholarships on an annual basis, before fall semester. I’ll cover this spring with money from the timely sale of my old car. Ultimately, starting now works in my favor because I’ll be applying for funding after taking classes and I can ask my professors for academic recommendations (I only have professional ones right now). My scholarship plea will hopefully include validation from the school’s own faculty members which is a strong advantage.

Public health is not what I ever expected to be studying but it’s absolutely perfect. Even with all of the unknowns (will I secure funding? will I have the stamina to study? how long will it take me to finish?) I’m over the moon to use what I’ve learned as a patient to influence disease prevention for others someday. More to come, stay safe this holiday season!


My dad is number twenty seven on the list of people who I talk to about my health. On one of my medical trips he ordered a greasy burger with onion rings from the hotel restaurant. He got sicker than I’ve ever seen him, stuck in bed (and on the toilet) the entire week while my mom and I shuttled to and from the clinic. His takeaway from this event? “I knew I shouldn’t have put that piece of lettuce on the burger. I just knew it would cause problems and look what happened!” The culprit was… the piece of lettuce.

So when faced with the opportunity to run my new theory by him I should have known something would get lost in translation. He actually took it pretty receptively suggesting that even the craziest of people could find merits in my discovery. We parted ways until later that night when he came home and said, “I told a friend of mine about your chlamydia. That’s a tough one.” Pardon? What chlamydia? I never said chlamydia, I said can-di-da!! Chlamydia is an STI! “Oh that’s right, you said candida. Well don’t worry I only told one person.”

The Definition

Candida is a fungus that can grow anywhere in or on the body. Most people have a little of it in their gut but it took full advantage of my compromised body years ago and became a major, invisible problem. It took over with my immune system so weak that it couldn’t react with consistent symptoms. So a typically non-threatening pathogen evolved into the very serious, invasive candidiasis. (NOT chlamydia)

The Discovery

I started thinking about the only known cause for NAM: statins. What do statins have in common with any conventional treatments I’ve tried? Statins lower cholesterol but have unintended anti fungal properties as well. I’ve never taken them but I found out that IVIG (a typical treatment for rheumatological diseases) can also reduce the presence of certain fungi. I tried IVIG three times with zero improvements. Two out of the three times were very large doses and I got aseptic meningitis. Less than 5% of people experience this side effect which entails the swelling of the inner lining of the brain and an excruciating headache. We’ll come back to this.

Okay, IVIG inadvertently disrupts some types of fungus. Have I taken anything that fuels it? The very first conventional intervention for many rheumatological diseases is usually corticosteroids. I followed Northwestern Memorial’s reputable protocol of steroids for the first 9 months or so of my disease. First oral prednisone, then a higher dose, then oral methotrexate, then injectable.

None of these relieved any symptoms but recently I learned that corticosteroids- the ones I swallowed and injected into my gut for 9 months- can cause severe candida infections. They suppress or turn off your immune system and can be lifesaving for short term health problems. Prolonged use like mine however, allows pathogens like fungi to flourish without your natural defenses to keep them in check.

Let’s go back to those attempts at IVIG- I had been on steroids for 5 months when I did my first infusion and got the aseptic meningitis. Aseptic meningitis also occurs when candida fungus spreads from somewhere in the body to the brain. I think that prolonged use of prednisone and methotrexate caused fungi to flourish in my body. Then IVIG killed some off and pushed some to my brain in the process (IVIG crosses the blood brain barrier), likely triggering the awful meningitis side effect. My immune system continued to be suppressed by the steroids for four more months after that first infusion, giving the fungus a comfortably compromised environment to set up shop again. My body crashed.

Over the next few years we discovered the lyme disease, which prompted use of antibiotics a few times. No improvements on these either but each round killed off what little good gut warriors I had in reserve; they gave candida even more unchecked power. I developed a wet cough overnight that would choke me with sputum… every, single, night. That’s not a symptom of my disease so my doctor ordered chest x-rays and didn’t see anything at all. So I’ve just lived with it indefinitely.

Then I did an adipose stem cell transfer last year (thanks to many of you!!). I felt great coming out of surgery; I remember leaving my cousin a voicemail because my voice was super strong. Fifteen days later I went to the ER because I couldn’t breathe and they diagnosed me with pneumonia, “likely bacterial”. They immediately put me on antibiotics. I seemed stabilized at first but took a scary dive and was suddenly in the fight for my life.

I am so grateful to be alive but I was equally perplexed by how it went down; seven years with NAM and I have never been hospitalized or even had a minor cold before this pneumonia! I know I didn’t get bacterial pneumonia from the transfer because my symptoms didn’t start until two weeks after the actual procedure. But my stem cell surgeon had me on strong antibiotics for one week after the procedure to prevent infection.

Those post stem cell antibiotics wiped out any remnants of good gut bacteria again. The fungus went wild, again. But this time I think it doubled down in my lungs and triggered fungal pneumonia. Crazy, right? Or maybe perfectly logical in hindsight. I didn’t even know fungal pneumonia was a thing. Apparently it’s extremely difficult to diagnose without cutting the affected lungs open and it looks the same as bacterial pneumonia on an x-ray. It also doesn’t respond well to antibiotics. Everyone thought my recovery was so rough because of my autoimmune disease but I now believe that I nearly died because my fungal pneumonia was misdiagnosed and erroneously treated as bacterial pneumonia.

By the time I got to this point down the rabbit hole all I could think was: holy shit. Holy shit, what do I do? Mayo won’t let me see anyone in infectious diseases- I’ve tried several times- because they require a positive test result for a referral to that department. And the other Mayo specialists I see won’t order the infectious disease tests because my symptoms aren’t text book. So I looked up natural, candida-killing supplements and ordered colostrum powder to see what would happen. I felt better for the first few days and then regressed so I knew natural solutions weren’t strong enough but that I was on the right track.

The Destination

If my chronology is correct this fungus has been thriving off of me for over six years. My incredible ND used Autonomic Response Testing to confirm that I have invasive candidiasis. I’m finishing my third round of anti fungal prescriptions tonight and will likely need to do several more rounds in conjunction with my gut rebuilding protocol before I see any big changes. They’ve already decreased my sputum excretion by 30% and I haven’t had a massive hives breakout since we started. Some days I’m drained some days I’m great. A few symptoms I couldn’t explain 4+ years ago have come back: sweating through my clothes during the day, random skin peeling, left eye irritation… all symptoms of a fungal infection.

Invasive candidiasis is a major obstacle that has never been addressed before so there’s absolutely no downside to this discovery. My symptoms indicate that my body is fighting the battle now that it has the correct pharmaceuticals to back it up. Writing out this wild story reaffirms something I’ve always known: my body is unbreakable and absolutely capable of healing. Pumped to let you in on one very good thing that happened in 2020. More to come!


It hit me like a ton of bricks on a regular afternoon at home. My fingers ran wild over the keyboard to keep up with the flood of medical questions that now suddenly needed answers. After a few hours I couldn’t find anything to debunk my hypothesis. Am I crazy, or did I just figure out what’s making me sick?

⏮ To recap: we know that this ordeal started with Lyme co-infections ~8 years ago. No bullseye rash, two false negative Western blot tests, and one *very* positive urine test.

⏩ Lyme bacteria triggered a rare autoimmune disease called, polymyositis– essentially it’s the destruction of the trunk muscles. I was relatively stable (walking, working) for ~1.5 years. And then I crashed. Within three weeks I became almost completely immobile. Something provoked a drastic decline in a very short period of time.

⏭ Over the following six years rheumatologists discovered 12 or so variations of polymyositis, so when I became a patient at Mayo they updated my diagnosis to Necrotizing Autoimmune Myopathy (NAM). It’s even rarer than polymyositis and the only known cause is the prolonged use of statins, which, I’ve never taken.

▶️ Two months ago I started thinking more about NAM. Are there any similarities between statins and any of the conventional medications I tried very early on?

Yes, yes there are. And then it All. Started. To. Click. One of my doctors at the Sophia Health Institute validated the merits of my hypothesis and I’m undergoing treatment right now (it’s treatable!). This will undoubtedly take a lot of time to overcome but we’re definitely on to something. Just four days on a new prescription and I experienced a duller version of every one of my symptoms in the same day, for the first time in 8 years. Prior to this they’d appear sporadically, one or two at a time, and seemingly isolated from one another (making it impossible to identify a pattern). Having my body respond to one new variable with every signal it has is a good sign.

I’m not ready to share the specifics yet; it’s too early in the experiment. But you can count on a full report when I have more results. If it’s good, we party! If it’s a goose egg, I’ll have the next trial underway before you can cancel your membership to the Strugglebus Science Fair. Regardless, thank you for sticking around… I couldn’t do this without the ocean of grace that you’ve afforded me in my healing journey. More to come!

Hot in Here

We’re all familiar with the classic Dateline mystery: the inexplicable disappearance of a small town cheerleader sends shockwaves through her community. Her wrestler boyfriend appears distraught at her candlelight vigil but the detective on this case picks up on some inconsistencies in his interviews. We spend forty-five minutes convinced that he’s responsible until his rock solid alibi comes through. No additional suspects emerge so this time, the case goes cold.

An autoimmune disease is the cold case of conventional medicine. You, the affected, become the detective and try to diagnose what happened with tests and specialists. If you’re lucky, you eventually identify the foul play that’s occurring in your body, but no one can explain “who” (or what) is responsible for it.

By now you probably know that I’m the unwavering detective that refuses to give up on solving her case—no matter how much time goes by. I research, interview, experiment, and follow every lead to figure out why my immune system started attacking my muscle tissues and how to fix it; my case won’t go cold because I won’t let it. And even though I’ve had a few chilly bouts here and there, every dead-end has been followed by a promising detour.

Happy to report that things on my case have been heating up since I uncovered new evidence from Viome. It’s an at-home, gut microbiome test that you can read more about in my last post. I took my first test in December ’19, followed all of their food and supplement recommendations for ~65 days. I retested again mid April. Here’s what changed:

Some anecdotal observations:

  • Food recommendations didn’t change a whole lot from v1 to v2. I was excited for tomatoes, cucumbers, and potatoes to be back on my “Enjoy” list this time.
  • Supplements were completely different in v2. This time they suggested two probiotics, one prebiotic, one mixed polypeptide, Berberine, and Zinc.
  • Gained weight after not being able to break 104 lbs for years (I was underweight for my height). I credit my improvement in protein digestion for this.
  • After being on the v2 protocol for just over a month I got the feeling that I wasn’t taking enough of the probiotics. So I doubled the dose. Now I sleep noticeably more deeply and my voice has been consistently stronger. The white coating on my tongue is vanishing.
  • Hives have been at least 50% smaller, appear less frequently, and go away 2-3x faster.
  • My gut is not in good shape. And ironically, I’m thrilled to have scientific evidence that something is biologically wrong with me! My blood tests are beautiful. My muscle biopsies show an uncharacteristically low amount of inflammation for an autoimmune case…but here is proof that my gut is inflamed.

Last week a family friend reached out to me because her cousin was experiencing an onset of rheumatological symptoms (not COVID) and they didn’t know where to start. #1 on the list of steps I sent her was to take this microbiome test— the faster she can balance out the bacteria in her gut, the better. But my question to those of you who aren’t necessarily “sick” is: why wait until bad bugs overrun your good microbes to do something about it? STEM can now provide you with information that it took disease detectives like me years to access. So, this summer, I hope you’ll take off all your clothes and take this stool test.

***Use STRUGGLEBUS10 to take $10 off of your test. I don’t receive any monetary or product commissions from this code.***

Gut Check

Over the last six years researchers have identified about a dozen more specific types of myositis than previously existed. My updated diagnosis from the Mayo Clinic is Necrotizing Autoimmune Myopathy. The symptoms are the same as with polymyositis but NAM is even rarer, causing less inflammation and higher rates of cell death. The only *known* cause is prolonged statin usage; I’ve never taken statin drugs so it’s clear that my immune system is reacting to something that doesn’t bother the vast majority of other people.

But why do I have NAM and you don’t? And, even more top of mind: why do coronavirus symptoms vary so much from person to person? I think that the answer to both inquiries lies in the foundational truth that, “The human immune system is highly variable between individuals…”.

The first time I started seriously thinking about how my microbiome fits into this was about four months ago. Maria Menounos posted a photo on Instagram about how she was tailoring her meals to a list of her personalized superfoods provided by a company called, Viome. I’m extremely skeptical about sponsored celebrity endorsements so as good as it seemed at first glance, I didn’t buy it right away. I watched a lot of interviews with their C-suite, but this one with Deepak Chopra and CEO, Naveen Jain sold me on it.

In exchange for a tiny scoop of your poop and responses to several health questionnaires, Viome gives you a personalized dataset of (1) superfoods that boost your gut functions, (2) foods you need to avoid or minimize because they promote bad activity in your gut, (3) supplements that will work well for your microbiome, and (4) how you rank — good/so-so/bad — across 20 different gut functions.

Your results are essentially a personalized recipe for balancing your microbiome. Why do you need this? “…The composition of the microorganisms in the intestine…has an influence on the quality of the immune reaction.” A balanced gut means a stronger shield against enemies like the coronavirus.

You don’t need to leave your house or have in-person contact with anyone to submit your stool sample. The only catch is that analyzing every microorganism in your gut takes about four weeks from the time they receive your sample. Given our our current state of affairs I say that four weeks is a drop in the 2020 bucket.

I want to be very clear that this is not a food allergy or food sensitivity test. I’ve taken both and had zero flagged foods. My Viome results, however, showed that foods I’ve eaten daily for years like tomatoes, potatoes, and cucumbers, were negatively affecting me. While my blood tests and muscle biopsies show little to no inflammation in my tissues, my Viome results, on the other hand, showed high levels of inflammation in my gut. In fact, 10/20 of my gut functions preformed poorly, 9/20 were so-so, and only 1/20 was preforming well. You might expect me to be discouraged by those scores but I’m actually encouraged by the potential for improvement.

I’ve followed their exact food and supplement recommendations for almost 60 days. I regained some range of motion in my neck immediately. I can lift my right shoulder a little more than before changing my diet and I can lift a heavier cup of liquid from my lap to my mouth on some days. At the ~30 day mark my acupuncturist said that my pulse was the strongest she had ever felt it in a year and a half. These may seem trivial but any change for the better makes a big difference in my daily life.

I’ve only just begun balancing the ecosystem living in my belly so I’m going to stick with it. Viome recommends doing an analysis every ~90 days for the first year so that you can adjust your intake as your microbiome changes. Ultimately the cadence is up to the individual. I felt a lot of little changes in the beginning and my intuition is telling me that it’s time to retake it now. I hope this is helpful and that you’ll consider how important your gut is in protecting you from pathogens like the one we’re currently facing as a global community. Let me know if you have any questions or if you decide to try it!


I am not a doctor. I am a longtime patient and I do my research. Sources are linked wherever possible.

I am not an asshole. I know that this test is expensive and that a lot of people can’t afford it right now; I get it and am right there with you. But the coronavirus doesn’t discriminate based on income so I am compelled to share my experience knowing that someone can still benefit from this information.

If I get Coronavirus I’ll probably die. Here’s what I think about it.

As you probably know, my immune system is compromised. And I recently survived a severe case of pneumonia so no, this title is not an exaggeration. I am observing this global pandemic from a unique vantage point and here’s what I think:

1. The virus itself isn’t our biggest problem.

It’s running out of hospital beds, doctors, and medical supplies if too many of us get sick at the same time. Because we’re not testing fast enough the people who have it and don’t know it are stacking up and spreading it. We can help people beat it until the influx of cases exceeds our resources; then we’re in big trouble.

2. Bet on your immune system.

Treating your body kindly will help you fight coronavirus if you need to. Take your supplements. Take extra vitamin C- you can take as much as you want until your stool gets runny, then decrease the dose. Stay hydrated. Get enough sleep.

3. Check your microbiome.

It’s an elusive universe of good and bad bacteria that live in your gut. If the bad guys start to outweigh the good it will stress your immune system out. If you can afford it I highly recommend doing the Viome analysis. Just send in a stool sample and answer their questionnaires. One month later they send you a personalized dataset of what specific foods your gut loves, which ones fuel bad bugs, and how well your microbiome performs twenty different gut functions. It takes a while but why not stack the deck? This isn’t going away anytime soon.

4. Extreme reactions from civilians aren’t helpful.

This goes for denial on one side of the spectrum and hoarding a two year supply of toilet paper on the other. The virus is here. People are dead. It’s more contagious than the flu. Is it a terrible idea to have more cans of beans in your pantry until we get a grip on this? Probably not. But you don’t need to fill a shed with stuff.

5. Being hostile to fellow humans for being worried is not fair.

Without consistent, uncensored messaging from pandemic experts and scientists it’s very difficult to discern how bad this really is or will be. I’ve seen a lot of people- some that I know personally, some that I don’t- rage ranting about how we’re disgusting for not washing our hands before the virus hit or scolding us for checking multiple sources for information. We don’t have a clear, rational, national, plan, and your Facebook friends aren’t at fault for that.

6. We’re in this together.

By taking the basic precautions you’ve read about over and over again elsewhere you’re protecting vulnerable people like me just as much as you are looking out for yourself. I greatly appreciate your efforts.


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.

Case Study Pt. 2


  • AmpCoil Usage: 6 months
  • Cadence: ~Every two days
  • Sensitivity Setting: Low

Note: I can’t testify to the AmpCoil’s efficacy as a stand alone treatment, as I am integrating it into my existing protocol of supplements, diet, and acupuncture at the direction of my medical team.

  • My Medical Diagnosis

    • Polymyositis
      Lyme disease

  • Quantitative Data

  • CK after four months of coiling: 118
    • The only data point with a direct correlation to polymyositis is the Creatine Kinase (CK) enzyme. Anything below 173 is considered normal
      CK immediately prior to receiving the coil: 230

  • Blood pressure has not decreased bellow 88/60 since Pt. 1

  • Weight bearing endurance has returned and slightly surpassed personal bests pre coil
    • I could not stand on my legs without collapsing for the first three months of coiling. I believe this is due to the combination of Rxs and coiling
      At the 6 month mark I can bear all of my weight for 29 minutes straight

  • Qualitative Observations

  • Hive outbreaks occur for the first time in my life
    1. First few incidents were small, red, itchy, mosquito bite sized bumps from head to toe. They appeared the morning immediately following a coil session
      The next few times only one side of my body would break out- either left or right. Again, usually appeared the morning after coiling
      For the first time I had an outbreak without coiling, immediately following a rigorous hydrotherapy session. This is the first indicator of a frequency therapy triggered “shift”, as my own body movement pushed the allergen to my skin’s surface
      A few weeks later the hives became welts. There were fewer, larger, sores (not itchy) on both sides of my body
      I began drinking food grade Montmorillonite clay once per day and haven’t had an outbreak since
  • Note: hives are a natural “allergic” reaction to something. These allergens have been deeply embedded internally and my body expelling them to its outermost organ (skin) is a very good sign
  • Sleeping deeper on non-coil nights
    • The “Immune Boost” and “Organ Tune-Up” tracks prompted my deepest sleeps before bed but on recent occasions I’ve experienced the same depth on nights when I don’t coil

  • User Experience

  • The General Detox series is the best place to start cleansing and I believe is what provoked my “shift”
  • 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!