Trigger Warning: Profanity, extreme illness, pain, hopelessness.
I’m trying something new with these log entries. I’m practicing—and training myself—to see humor in darkness.
It leans dry and dark, but I may lighten things up a bit. But it’s still raw truth.
Have you ever been in a multi-year crisis where you felt the walls of bad options closing around you? With each horrifying bad choice only tightening the space around you, soon to crush you like an egg?
I hope not, because this is a horrible, terrible feeling. And it’s what I’m experiencing now…
My predicament is so complex, so insane, so Kafkaesque—that it can’t be explained in a single post. But I will try.
For beginners to my blog: I have a very complicated and rare mix of chronic and acute illnesses. And I believe one of my diseases is “slow” terminal.
Doctors can’t confirm or deny this because they’re rare, near impossible to diagnose, and incredibly difficult to understand. My disease complex is beyond today’s medical science.
I know this because I’ve seen over 300 doctors since I fell ill a decade ago. Some treatments did slow down some of my diseases. But none has stopped the progression. And the treatments eventually lose efficacy. Meanwhile, new diseases keep piling on to my complex, stacking atop each other, making everything harder.
There was a time when I innocently trusted anyone wearing a lab coat or scrubs. But those days are over. I was forced to become my own medical advocate and expert of my disease complex. Forced to be skeptical of others’ gaslighting in order to stay alive.
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[If the humor is forced, that’s because I feel like I’m dying. But I’m force feeding myself humor anyway. I’m hoping this can somehow make me feel better.]
…And that’s how I met Doctor Me.
Here’s what Doctor Me told Patient Me: “So you’ve suffered anozzer acute and protracted sleep deprivation episode a couple of monzzs ago. Zree days zis time! Zis pattern…zis pattern is unsustainable. For life. For living!”
Patient me: “I know. I’m even hallucinating now. And I thought my heart would give out. It was… stuttering.”
Doctor Me: “Paroxysmal tachycardia – vhich you’ve been diagnosed vith before. And possible paroxysmal affib, I might add. Vee must do tests.”
Patient me: “Okay, but what do I do in the meantime? I’ve tried Zoloft, Xanax, Hydroxyzine, Klonopin, Ativan, Propranolol, Ambien, Haldol, Abilify–”
Doctor Me held up his hand like a stop sign and said: “No, no, you’ve tried all zose zingkts and zey didn’t vork. No more drugs! Trust me vhen I tell you zis: it’s not in your mind. Your brain is NOT ze problem. It never vas.”
“Thank you, doc,” I say as tears well up.
“Vell, you’re talking to me, aren’t you?”
And that hit me. Right in the gut. All those years of being gaslighted by other doctors, friends, and family. All with their iatrogenic beliefs. And not believing me. But Doctor Me validated my pain, my illness—and me!
Suddenly, it all gushed out. Large dollops of tears fell as I began to shake.
Doctor Me slapped me hard (but it didn’t hurt at all). “Zis is NO time for tears! Listen to Me! Your pazzology is of pazzogenic etiology. Zat’s it. But very serious! Vhat you need is a special prescription.”
Doctor Me whips out his pad, scribbles on it and says, “First, log your statistics every day onto a graph and draw a trendline zroo it. Do zis twice a day, before breakfast and dinner.”
“Second!” he continued, “Start a blog about your suffering. And please please, keep it pleasant. Readers don’t vant to hear about all zat dark stuff, you know.” He emphasized ‘dark stuff’ by fluttering his hand in the air like a bird.
“Vordpress is a very good blog site. And it’s free. If you upgrade to zheir premium service, use ze coupon code “startup10” for 10% off. Expires tomorrow.”
“Thanks, doc. That’s actually—”
“Zird! Put it all out zhere! Don’t be afraid. Everyone knows zat vee Germans love getting naked in public. So be German. Don’t be afraid.”
“Got it.”
“Goodt. Come back in six monzzs if you’re still alive. If not, don’t vorry, vee talk in heaven. Goodbye.”
This was the advice I needed. That Doctor Me. He sure gets it.
****
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If I had the past months’ data to make a line graph, that line would have passed a bottom threshold a while back. This was when I was in so much pain that, for the first time, I had zero sleep for over 72 hours.
That was one of the most horrific experiences I ever had. I know more days like that are coming. And for longer stretches. It terrifies me.
With my acute, intractable, and rapidly progressive bone infection, sepsis is a risk for late-stage osteomyelitis. I’m already what feels like subclinical septicemia symptoms. That’s why I was at the ER a few nights ago. Because sepsis can kill within hours. It causes 20% of deaths in the entire world and is the most common cause of hospital deaths in the USA.
Then there are the additional risks osteomyelitis poses to the heart: endocarditis, pericarditis, myocarditis. Heart valve vegetation (emboli). Heart failure. Heart attacks. And let’s not forget my pre-existing heart conditions: murmurs, regurgitations, tachycardia…
I’m young, I have a three-year-old daughter who needs me. This is cosmically unfair. Or cosmically funny, I guess.
The good news is that with massive interventions this trajectory may be altered. My life expectancy may be extended by years, perhaps even decades!
But then there’s double bad news. And that’s that these interventions require resources I do not have. What I do have is a heroic amount of revolving credit card debt. I make my minimum payments, but the debt balloons each month.
Revolving credit card debt. That’s a strange term, isn’t it? The words “credit” and “debt” are total opposites of each other. Yet there they are, juxtaposed so closely together, describing the same thing. Very confusing. So, for clarity’s sake, I prefer to call this credit-debt thing “diarrhea quicksand.” No ambiguities whatsoever.
So, yeah. I’m in diarrhea quicksand now.
On top of all this: one of my worst illnesses is so bizarre and unreal that you won’t believe it. Definitely not at first. And maybe not ever. But that’s ok. I didn’t believe it either. Not for a long time.
When I went to the ER three nights ago, boy, was it bad.
Fortunately, that danger passed as I sat outside, intermittently checking all my vitals (BPM, BP, O2, EKG, temp, respiration rate) in the parking lot. Finally, at 10 AM, with just one hour of broken sleep in the car, I drove 30 minutes home where I continued to feel terrible.
Unable to nap at all, I instead did a root cause analysis of the recent plunge in symptoms. Ultimately, I traced the causes back to my apartment and car: they had become too toxic, too contaminated, for me. They were making me worse.
Because I had quarantined myself in my apartment for weeks now (aside from that one farewell dinner with my four friends), I was unable to tell, like a frog in slow-boiling water, that my bedroom had gotten too toxic.
My bedroom was my last bastion of safety: the one relatively tolerable place I had left. But now it, and my car, were toxin saturated. They were unbearably inflammatory to me. Toxin exposure triggers landslides in my jaw infection (osteomyelitis). Which triggers more systemic, sepsis-like symptoms.
Make no mistake, osteomyelitis is my looming killer. It’s my public enemy number one. And after five failed surgeries of teeth removals and debridement of necrotic tissue, most dental surgeons who specialize in this type of “cavitation” surgery will no longer perform surgery on me. Because my osteomyelitis is that bad now. It scares them.
But this is just enemy number one. It isn’t my only crippling illness. Life isn’t letting me off that easy. It wants to make things really bad. So bad that I blog about it.
So the other crippling illness is my environmental toxin hyper-reactivity and sensitivity—from mold, mycotoxins, nanoparticles, heavy metals, chemicals, and all sorts of other airborne microbes and toxins.
And here’s the unbelievable part. My body gets inflamed and injured by undetectable levels of airborne toxins. “Undetectable” as in normal people can’t detect them. So they’ll walk into my apartment and say, “Hey it feels fine. What’s up?”
We’re talking about molecules. We’re talking about plumes that only dogs or bears might detect.
This means I get sickened and slammed by apparently imaginary toxins.
This means most buildings are toxic to me, including hospitals and doctors’ offices. It means I can’t hug anyone because everything is toxic, including their clothes. It means most things including all my now-cross-contaminated things are toxic to me. It means that most food is highly toxic. And most cities and neighborhoods, too.
It’s so crazy, it can’t be believed. Yet, here I am writing this.
And even if I had a bubble to live in, I would cross-contaminate it quickly inside—due to all my detox. Yes. I am toxic to myself. In fact, sometimes my sweat burns and I need to get it off immediately. It’s a real thing. Which is why frequent decon (showers) are critical. And why disposable clothes are part of the toolkit.
Maybe my inflammatory diseases are better explained and believed with analogies. So think of a shark or a bear’s ability to smell blood miles away from a bleeding animal. Or imagine the passenger on a plane who goes into anaphylactic shock because someone six rows ahead of them just opened a bag of peanuts. Undetectable molecules. They’re not imaginary. The phenomenon is real.
Let’s ignore how I got this illness for now and skip ahead into symptoms.
My physiological reaction to toxins and contamination is intense. It often starts as a sudden headache or pressure (feels like air is pumped into my skull) or as a burning sensation on my scalp and upper body (as if I’m getting sunburnt). Different kinds of toxins may trigger their own pet symptoms. But I don’t know how to differentiate the different toxins yet. All I can do is try to decontaminate and escape.
If I don’t escape and remain contaminated (which often happens), these initial inflammatory symptoms escalate and begin to burn inside my chest and head, and spread to my organs and extremities. As it does this, I also develop dyspnea (labored breathing). And my breath feels very hot.
If I still can’t escape, my vitals also become affected with arrhythmia/tachycardia and irregular blood pressure, and I begin losing my ability to think. Then body aches, sharp shooting pains, and the works.
The more acute and longer the hits I am exposed to, the longer it takes for me to get back to baseline. So a 1-minute low-toxin exposure is no big deal. Rinse off my head and face and I’m back to baseline. On the other hand, a 6-hour, high-toxin exposure may take me days to recuperate from.
But that’s not all, folks. Then there’s cross-contamination. And self-contamination.
Yes, it gets even more unbelievable: things cross-contaminate very easily. If an object stays nearby or in a contaminated room for long enough (depending on toxicity level), that object also becomes contaminated. And my body reacts.
Even worse, if this now-contaminated object is placed next to a second object or, say, in a car for enough time, now that second object or that car is also cross-contaminated.
I had refused to believe that this nightmare could be real. Or, if it was, it couldn’t possibly affect me. But affect me it did. And with a vengeance. For a while, I was in denial. I thought for was in my mind. But countless tests I’ve done, and countless experiences, have all confirmed that it’s real. Very real.
If you’re still not open to this idea, here’s another way to look at it. Again, think at the molecular level. Everything sheds molecules. Even the bottled water you drink has molecules of plastic in it leached from the bottle itself. And if that water bottle was out in the sun, the sun has catalyzed more plastic molecules to leech into the water.
So the toxin molecules, like blood molecules, travel in the air just like spores. And they land on things. Some of these molecules get absorbed onto or into other materials. Some break off and float around again. But we are swimming in these molecules that only some animals (and humans) can perceive.
Another way to think of it is like ionizing radiation. If you put a cup inside a radioactive room, or next to some plutonium, that cup will become radioactive. Then if you take that cup and pour some water into it, that water becomes radioactive. Drink that water and you’re now radioactive. Sit next to that radioactive person and… you get the idea. This is cross-contamination.
Some in the medical community have a name for this. They call it Chronic Inflammatory Response Syndrome (CIRS). It’s a topic of much debate. The big question they and we all have is, why are we sick by these toxins while 99.9% of humans are not?
No one really knows. All we know is that for the 0.1% of our population, something in our bodies broke. Like getting bitten by a radioactive spider and becoming a mutant with superpowers. Except in a bad way.
Fortunately, this inflammatory process is painful but not deadly. A person can be severely toxin sick like me and resume living a long sick life without recovering. Life will be brutal savage torture, but they won’t die. If they figure out that their illness is environmental, and they radically alter their lives around this premise, they may be able to resume some normality. There is hope.
Even though CIRS is not a terminal illness, osteomyelitis can be. And that’s my problem.
The problem is that this toxin disease adds fuel to the osteomyelitis fire. It triggers rapid progression and spreads the necrotic infection. Already a third of my jaw bones are affected. And this is not a surface infection. It is a deep bone infection, deep into the core, and even beneath the nerves.
If I’m hit with even a brief but medium toxin exposure—like, say, above a level 4 in this chart—the toxin inflammation triggers the osteomyelitis. Then there is the cascade of additional symptoms I’ve discussed. This is what prompted me to go to the ER three nights ago. Ultimately, it increases the downward slope of my trajectory into a terminal zone.
So here I am, currently flaring up in my toxic bedroom for hours. My car is also toxic and unusable. I sit naked since my clothes are bad, and I’m taking a dozen showers a day for temporary relief. I sit in front of this contaminated laptop surrounded by all my other contaminated stuff. I’m severely sleep-deprived. And I pray that my jaw infection doesn’t get pre-septic.
I’m screwed. The walls have closed in. I’m out of options. I can barely breathe.
But if I’m going, I’m going out raging into the night and all.
The one thing I can do is post my struggle as I deal with it.
Here’s a new daily stats page of my most important data: my pain, sleep, and toxin exposure.
I’ll post it up for others to see. And when I have enough data, I’ll even draw that trendline.
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