How I Became a Medical Mystery (Or: Why My Doctor Thinks I’m Immortal)

I received an email from a reader recently, and let me tell you, this man did not waste syllables. His words came crashing in like a plate of oversalted fries at 2 a.m. “Hello,” he wrote. “I’ve followed your blog for over a year. I have cardiac sarcoidosis and was told my heart damage is permanent, that I will only get worse, and probably need a transplant. Unlike you, I do not also have lung sarcoidosis, heart failure, pulmonary hypertension, and a leaking PFO… yet somehow you keep getting better. My doctor says you are either lying or a miracle. How the hell can you get better?”

See, this is what I love about our tribe: even in the fire, we’re looking for the exits—or at least someone who walked through the flames without turning into charcoal. And then we ask them to use their crispy fingers to draw us a map.

So I sat down to answer him. “Hi Jake. Thanks for writing. Let me start by saying this: you are not wrong to be confused about how I’m still vertical. Most days I stare at my medical chart like it’s a bad novel written by someone who hates the protagonist. My five doctors agree that, based solely on anatomy and statistics, I should be horizontal somewhere—not typing this, not cooking, not arguing over which of our pets stole the cheese again. But here I am.”

I am no miracle. I’m not cured. My sarcoidosis is very much still present. I’m still in heart failure. My oxygen drops dangerously when I move around. That’s why my stationary bike has an oxygen tank accessory—because nothing says “athlete” like tubes up your nose and a smartwatch reminding you to breathe. My defibrillator could decide to zap me any day, but it hasn’t yet, so we’re still on speaking terms. But I am better. Like… measurably, not-maybe-must-be-placebo better. And that is what confuses the doctors.

I was told my heart damage was irreversible. I was told cardiac sarcoidosis was progressive and grim. I was told to prepare for the worst. And yet, little by little, things improved. I’m not cured. I’m not even consistently okay. But I’m alive—and sometimes downright obnoxious about it. You want to know how I did it? I had faith. Not just in a cosmic higher-being sense (though that helps), but in myself. I decided that if my body was going to be a full-time job, I may as well be the one writing the performance reviews.

I do research. Some people crochet. I read medical journals and obscure studies with a glass of water (since alcohol would probably send me straight to the ER). I subscribe to blogs, support groups, anything that keeps me informed without turning me into a hypochondriac. If someone on page 6 of a forum claims fermented mushrooms reversed their left ventricle chaos, you bet I’m looking into it… even if I ultimately decide that kitchen smells too weird to try.

I also don’t share my diagnosis with everyone I meet because I believe energy matters. You know how people say you are what you eat? I think you’re also what you repeat. If every time someone asks how you are, you list eleven symptoms and your prognosis, you give the illness power. I learned to say “I’m fine” even when I wasn’t—because saying “fine” helped my brain send different signals. Those days when I repeated “I hurt, I’m exhausted, I’m afraid”? My body delivered on that. Now I say “I’m good,” and I let my body catch up.

There’s a difference between sympathy and support. Sympathy is, “Oh poor you, that sounds terrible,” and it often carries a funeral vibe. Support is, “You’re strong, I’m here, what can I do?” I’ve learned to seek the latter and avoid the former like it’s sugar on a low-carb day.

You know what else I have? An incredible wife. She makes sure I use my oxygen when I have a tantrum and don’t want to, and my snacks are precisely, deliciously, anti-inflammatory. She keeps me tethered to routines and hope. Love does that—it gives disease less room to settle in.

Look, I can’t tell you that you can reverse damage like I did. I didn’t do anything special—no superfood, no magic supplement. It was a mix of faith, self-advocacy, research, intuition, and tuning out voices that feed anxiety. No one should ever tell you you’re making it up when your body starts doing better. Sarcoidosis loves confusion. But it doesn’t get to own you.

Follow your instincts. Read, listen, test things that feel right for you. You will know when something shifts—often before any doctor does. Your body is not the enemy. It’s a loyal, confused instrument trying to perform in bad conditions. Give it patience. Give it encouragement. And for the love of all that’s holy, don’t let anyone write your epilogue early.

So…

Tell me—what are YOU doing on your craziest health days to stay upright and alive? Drop a comment below or subscribe. This circus isn’t slowing down anytime soon, and you might as well get comfortable in the front row.