I Don’t Want No Fibro, a Fibro is a Pain That Can’t Get No Love From Me

All my diseases are a 90s mixtape

I am not a one-trick health-crisis pony.

Oh no.

I own the whole damn stable.

Each diagnosis trots out with its shiny little saddle and neighs, “Surprise! You’ll need another specialist.”

It’s basically If You Give a Pig a Pancake—except darker. If you give me a referral, I’ll need a specialist. If I need a specialist, I’ll need a diagnosis. If I need a diagnosis, I’ll need… another specialist.

And another. And another.

There’s no ending to this twisted children’s book.

My newest prize ribbon, courtesy of my Rhuemotologist: Fibromyalgia.

TL;DR: I’m not a one-trick health crisis pony—I run the whole damn stable. Every diagnosis comes with a referral, every referral comes with another specialist, and the carousel never stops. My newest prize ribbon? Fibromyalgia: a nervous system toddler with a drum set and no supervision. I don’t want doctors who slap labels and walk away—I want the curious ones, the ones who dig deeper. Four years of research, therapies, and stubborn survival have made me an herbalist, death doula, nerve maven, and professional patient. I don’t need pity; I need answers. I’m tired, but I’m still hopeful—and that’s enough to keep me in the fight.

What is Fibromyalgia?

Oh, that’s just when your nervous system decides to stop being a well-behaved orchestra and instead becomes a tantrum toddler with a drum set, a recorder, and zero supervision. Everything hurts, everything’s loud, everything’s unpredictable, and the doctors pat you on the head like, “Wow, so mysterious.”

Yes, it is another piece of this dysfunctional jigsaw. Another ticket punched to Specialist Town. Next stop: back to my Neurologist, Allergist, and Immunologist. Did you know there’s an autoimmune disease that devours your myelin sheath like it’s an all-you-can-eat buffet? Oh, it’s out there. And apparently, I might have RSVP’d.

I don’t want doctors who slap a label on me and move on. I want doctors who tilt their heads at my chart, mutter “what the actual,” and dig deeper. Because I’ve already been doing the digging—four years of it.

Research. Trial and error. Supplements, therapies, the occasional weird science experiment on myself. Some worked. Some bombed. But I’m still standing. I’m not just “sick”—I’m a walking encyclopedia.

I have knowledge and experience in many fields. I’m a giant hephen - An Herbalist. An Aromacologist. An Integrative Health Specialist. A Death Doula. A Teacher. An Author. A plant made. A nervous system expert. And frankly, being chronically ill should qualify as a full-time salaried position with benefits.

When I roll out the yoga mat, when I meditate, when I do acupuncture, craniosacral therapy, or somatic breathwork—it’s not about hashtags or some Instagram wellness trend. It’s survival. It’s the only thing that helps the neuropathy, the trigeminal neuralgia, the electric shocks, the bone-deep fatigue. Herbs and tinctures are my weapons.

And here’s the kicker: this déjà vu feels familiar. When Logan was a baby, he’d stop breathing and turn blue in the night. ER 22 times in one month. Nurses knew us by name, doctors by the sound of my panicked footsteps. He had x-rays, breathing treatments, surgeries, hospital stays, Mayo assessment. He nearly died, and no one ever figured out why or what triggered his chronic croup. Then it was Reactive Airway Disease. Then, like some cruel magic trick, it just vanished in his teens. Mayo called him an enigma. Maybe that’s my destiny too: unsolved, unexplained, mysterious.

But here’s what I do know: every test result, every new label, is proof I’m not crazy. Not hysterical. Not “just anxious.” Not overreacting. Not just menopause. Not a woman being dramatic.

Real. Tangible. Valid.

All of my specialists are going to play nice together if it’s the last thing I do. I want answers, not excuses, and I’m done being dismissed, especially as a woman whose symptoms don’t fit neatly into their pre-written scripts.

Here’s the thing: I didn’t just wake up one morning with neuropathy. That’s not how the human body works. There is a cause. A reason. A spark that lit this fire. Yes, I have fibromyalgia, but fibromyalgia does not cause neuropathy. That’s where CIDP testing comes in. I want my neurologist to look me in the eye and tell me: do I have this—yes or no? No hedging, no vague nonsense.

Because let me tell you, I am a dog with a bone when it comes to this. Ask any of my specialists. I absolutely drive them crazy. But you know what? Every inch of progress I’ve made in the past four years—I made it.

Me.

Not medications, because most of them make me sick. I can’t even take Clairin without getting ill and my neuropathy raging out. Not quick fixes. Just me, my persistence, my own therapies, and my refusal to give up.

What I need now isn’t another pill or a shrug. What I need is curiosity. Why did this happen? How do we keep it from happening again? Don’t insult me with “idiopathic neuropathy.” Do you know what that word really means? It’s Latin for “we don’t know, and we’re not curious enough to find out.” Honestly, they should call it psychopathic neuropathy, because it’s idiotic to tell patients their body just broke for no reason. People don’t just “magically” get neuropathy. There are thousands of possible causes—deficiencies, autoimmune issues, toxic exposures—not just cancer treatments or diabetes.

I have been lucky that my family practice physicians are curious. They’ve sent me for bloodwork, MRIs, CT scans, x-rays, endless tests under the sun. That curiosity matters. That curiosity is how patients get answers. And that’s what I need from every specialist: the same relentless drive to actually give a damn.

So yes, I’m on a mission. And when I walk into that office, I’m not just bringing my folder of previous tests. I’m bringing every ounce of persistence, frustration, and fire I’ve built up.

Full force. No apologies.

Not all my doctors suck. Just a few. Enough to make the system feel broken. Enough to leave me tired—but not hopeless.

Because that’s the truth of it: I am tired, but I am still hopeful. And for now, that’s enough.