The Fine, But Not Fine Podcast

Most people with mycosis fungoides spend 2–6 years being told it’s “just eczema.” I wasn’t one of them. And it wasn’t because I got biopsied early (I did, and it was wrong). I got diagnosed in 4–6 months because I accidentally landed with a dermatologist who knew what to look for, chose the right biopsy site, and knew that early biopsies often can’t confirm it. In this episode, I walk through what usually goes wrong, what happened in my case, and the four obstacles that keep this disease hidden.

A patch showed up on my lower eyelid practically overnight. Itchy, red, scaly — and it could have been almost anything.
Having mycosis fungoides doesn't make you immune to ordinary skin problems. It just turns every ordinary skin problem into a question. And answering that question takes months.
This episode is the process. The steroid that did nothing. Four weeks of topicals that did nothing. A biopsy on my eyelid. Seven days of waiting. And the answer I already expected, which changed things anyway.
I don't have the ending yet. I'm telling you anyway.

Most hard things come with a finish line — six rounds, twelve weeks, "get through this and you're on the other side." I don't get that sentence. My treatment doesn't end; it just continues, for as long as my body needs it. This episode is about treatment fatigue, not the kind where one appointment is brutal, but the kind where the hard part is the forever of it. And how I've learned to carry that without letting it stop me.

When you treat a cancer that can't be cured, you don't just manage the disease, you manage what the treatment does to the rest of you. My liver numbers climbed high enough that I had to come off my medication entirely. This episode is the cascade that followed: the referral, months of waiting, vials of blood, a FibroScan, and the relief of an answer.

150 in-office treatment appointments in a single year. Three days a week, every week, driving to another city because there's no NBUVB light where I live — or where I work. In this episode, I'm talking about what treatment actually costs: the miles, the time, the scheduling, the money. And the harder question underneath all of it — whose job actually lets them do this? Because not everyone has the flexibility I do. And that matters.

What does it actually look like to walk into a state legislature and fight for rare disease patients? This episode, I share what I learned from two days advocating at the NC Legislature with the Everylife Foundation for Rare Diseases — what surprised me about how state lawmakers think, why the knowledge gap isn't what I expected, and what a single staffer's comment about a stack of one-pagers taught me about what advocacy actually requires. Plus: three NC bills that still need your voice.

In Part 2 of my Rare Disease Week experience, I take you inside what it’s actually like meeting with lawmakers and their staff on Capitol Hill. I talk about how patient stories influence policy, how advocacy conversations unfold, and why showing up matters for the rare disease community.

I just returned from Rare Disease Week in Washington, DC, where patients, caregivers, and advocates come together to push for change in the healthcare system. In this episode, I share what federal advocacy actually looks like—from packed briefing rooms to meetings on Capitol Hill—and why these conversations matter so much for people living with rare diseases. I talk about what surprised me, what I learned, and why patient voices are essential in shaping healthcare policy.

This episode is the “before.” Before I head to Washington, DC for Rare Disease Week on Capitol Hill, I share why I said yes, how I’ve prepared, and what I’ll be advocating for as a rare disease patient. We talk about insurance denials, the Protect Rare Act, and how advocacy can look different for each of us—at the national, state, or local level.

One year into Fine, But Not Fine, I’m reflecting on why I started this podcast, what I planned for, and what surprised me along the way. This episode isn’t a highlight reel—it’s an honest look at living with chronic illness inside a healthcare and insurance system that asks too much of patients. I talk about anger, advocacy, learning to live with uncertainty, and the quiet truth that even when things are hard, life keeps on living.