Hi, I'm Toni Bailey

Writer · Patient advocate · Co-founder, Oregon Coast AI

The thirty-year scavenger hunt

For as long as I can remember, something was off, and I had the doctors and the appointments to prove it. But every visit went the same way — a new symptom, a single-issue fix, and back out the door. Fatigue? You're just tired. Can't focus? Here's a prescription. Aches that moved around the map of my body? Walk it off, watch your posture, try to relax.

Not once did anyone step back and ask the only question that mattered: what is actually happening to this patient?

Then, in January 2026, after thirty years of loose threads, one word finally tied them together — fibromyalgiaA chronic condition causing widespread pain, deep fatigue, and "brain fog," in which the nervous system amplifies pain signals.. It isn't a cure. It's a frame — the whole picture, at last. The relief of finally being believed is hard to put into words.

Before the diagnosis, there was a whole life

I wasn't always writing about chronic illness. Long before Fibro Hub, I ran Toni Bailey Photography in San Francisco — more than a thousand weddings over sixteen years, from City Hall ceremonies to celebrations in Spain, England, Jamaica, Mexico, and Italy. Photography taught me to notice: the light, the glance, the small true moment that holds the whole day.

Then the sea called. I'm a U.S. Coast Guard–licensed Master (100 tons), and for years the water was home — I lived aboard from Hawaii to the mainland, down through Baja, the Sea of Cortez, and the west coast of Mexico, and ran deliveries up and down the Pacific. Offshore, you don't get to fix one gauge and ignore the rest. You read the whole sky and the whole sea at once, or you don't make it in.

Different tools, same instinct: see the whole first, then care for every part. It's the instinct medicine never used on me — so now I help build it on purpose.

What I do now

These days I'm co-founder of Oregon Coast AI with my partner and soulmate, Ken Mendoza, and Director of Operations at MendozaLab — building research infrastructure from the patient's perspective. The short version: Oregon Coast AI turns first principles into patentable technology for human-need systems.

The longer version is that I get to aim everything I learned the hard way — about being unseen by a system, about reading the whole picture — at the conditions that nearly slipped through the cracks of my own life. Fibromyalgia, and the diseases that travel with it.

I'm not a doctor. But I am a patient who builds, and I write Fibro Hub from inside both.

How to read this blog

You'll meet a few voices here:

Me (Toni) — the lived experience, the experiments, the honest bad days.
Ken — the research notes, the studies, the "here's why it works."
Samba & Kona — the cat who supervises and the dog who steadies. They earn their callouts.

Some posts are practical. Some are just me telling the truth about a hard day. All of it is real, and all of it comes from actually living this — at Sweetieport Bay, on the edge of Alsea Bay, on the Oregon coast.

Come say hi