Sit Down Before Reading: An Epic Medical Memoir

a medical memoir unfolding in real time  //  laugh, cheer, cry, scream  //  
reading every word recommended - the details could save your life  
// 

prepare for 20+ episodes  //  new installments released here Wednesdays

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cairns on a log at the Pacific Northwest coast

PART I

Preface

The story I'm going to tell you will challenge you to reexamine life with a progressive disease, send shockwaves throughout the disabled community, rewrite the rulebook of healthcare and potentially change your entire future. That's all.

2 min read

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CHAPTER 3

Operation Overturn

One lone, gimped-up disabled guy named Dave wouldn’t dare go toe-to-toe with a $2 billion organization, would he? You mean the guy so motivated that he wallpapered his garage with $198,000 of denied medical expenses? Uh-oh.

7 min read

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CHAPTER 6

Breaking Brain

My white-hot brain had developed an idea to capitalize on Albuquerque’s connection to the hit TV franchise Breaking Bad, one so deep and rich that it would remake the city into an international tourist destination. But something was off. Way off.

9 min read

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CHAPTER 9

Fate, Meet Destiny

There was one sentence in my Hail Mary letter to my doctors that unlocked the mystery that had been plaguing me for the past 17 years. Finally, an answer, as this fateful tale meets its unbelievable destiny to conclude Part I of Sit Down Before Reading

6 min read

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CHAPTER 11

Crazy Not Crazy

I was getting better at lying to my wife. And figuring out conspiracy theories, a new specialty of mine. But also, I realized that I needed to get on treatment for my newly discovered disease. Just one minor problem: would any of my doctors believe me?

7 min read

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CHAPTER 14

A Nobel Act

One must be true. Either I win a Nobel prize for discovering that a common antibiotic effectively treats MS … or I win a Nobel for exposing a catastrophic flaw in the diagnosing of Lyme disease that will result in scores of MSers getting undiagnosed.

8 min read

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CHAPTER 17

Ipso Facto

When it comes to cases of multiple sclerosis, the unofficial official policy, worldwide, is straightforward: no routine testing for Lyme disease and absolutely no treatment without a positive confirming two-tiered approved test. So says science, ipso facto.

12 min read

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CHAPTER 20

Clear Eyes, Open Heart

I was struggling to keep lofty expectations in check. I wanted to soar skyward, lift above the clouds. But after months of failing to get appropriate treatment for my Lyme disease, it was hard not to get demoralized. Then an unusual opportunity presented itself.

8 min read

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CHAPTER 1

Sit Down Before Reading

That’s the exact subject line of the email I sent my medical team. A message that would ultimately save my life. You’ll better understand after you read this. And I apologize in advance because you should probably take that advice, too.

4 min read

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CHAPTER 4

The Widow Maker

Water buffaloes are among the most dangerous of all animals in Africa. There’s a reason they have the cheery nicknames “black death” and “widow maker.” We jump forward, to the summer of 2020. When things were again feeling off. Really off. The water buffalo was snorting.

8 min read

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CHAPTER 7

Final Hail Mary

My body was collapsing. My brain was splintering. Laura and I were doing whatever we could do to keep it together—twine, duct tape, a tube of three-year-old nearly dried-up Krazy glue—while we sought out answers. This was our final Hail Mary.

6 min read

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PART II

Introduction

As I waded into the horrifying detritus of other lives crushed by my newly discovered disease, I unbelievably uncovered evidence of what could be one of the greatest failures in the history of modern medicine. And it affects everyone diagnosed with MS.

5 min read

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CHAPTER 12

Roll of the Die

The reported odds of being misdiagnosed with multiple sclerosis are frightfully high—1 in 6, the roll of a single die. Was I feeling lucky? Because the consequences of waking up your soundly sleeping wife at 1:30 a.m. for a false alarm could be calamitous.

10 min read

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CHAPTER 15

Jenga

Tests form the backbone of eliminating Lyme disease from consideration when diagnosing MS. The tower of new coincidences in my case kept getting stacked atop the already swaying Jenga tower of coincidences built up over the last 17 years.

10 min read

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CHAPTER 18

Taking a Stand

The best possibility for me to reverse my myriad disabilities brought on my Lyme encephalomyelitis—to have a fighting chance to be able to put one foot in front of another and walk again—means IV antibiotics, universally deemed “medically necessary.”

11 min read

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CHAPTER 21

An Improbable Proposal

Desperate times called for desperate measures. Despite trying for months to find a doctor to treat my Lyme disease, all outreach had been rebuffed. I had to let every arrow fly and think outside the box, outside the state, and outside the realm of probability.

7 min read

Coming 10/5
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CHAPTER 2

100 Meters

If I was going to have a chance to avoid entering a nursing home in my early 40s, all I had to do was walk 100 meters. That's all. Easy peasy lemon squeezy.

 

I was so screwed.

7 min read

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CHAPTER 5

Pit of Despair

To my untrained eye, the catheter I was about to insert looked to be five, six feet, something that could lasso a horse or hogtie a pair of criminals. My lesson in self catheterization, though, paled in comparison to planning my own funeral.

7 min read

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CHAPTER 8

Checkmate

I didn’t know what to do. Which direction to turn. Where to hide. I considered taking shelter in my memories, assembling, sorting, and then organizing them into a majestic quilt of my 53 years in this world. But first I needed to play chess. With the Devil.

8 min read

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CHAPTER 10

Zebra Found

I finished my revelatory email—courteous, professional, and detailed with evidence—and typed into the subject line “Zebra Found! (sit down before reading, sorry).” After one final proof—yes, I was 100% confident in this diagnosis—I clicked send.

9 min read

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CHAPTER 13

Joyrified

Question marks swirled around me like a late summer dust devil as I entered my first week of treatment. Would I see improvements? Could I lift that 20-lb. weight? Would my UTIs stop? And how would I tell my friends about my diagnosis?

7 min read

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CHAPTER 16

Never Ever

I never should have discovered my multiple sclerosis misdiagnosis. To understand just how incomprehensibly fortunate I was means suspending all knowledge of how odds work. Because everything had to line up just so. Unbelievably, it did.

10 min read

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CHAPTER 19

The Writing is on the Wall

The writing is on the wall, and it couldn’t be any clearer. Yes, I am sure-sure that I have Lyme disease—despite being diagnosed 17 years ago with “clinically definite” multiple sclerosis. And yes, the gains after taking antibiotics are real. Really, really real.

6 min read