The Fine, But Not Fine Podcast

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 ar...

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.

In this episode, I share a day that looked fine on the outside—but quietly changed something in me. A cancer treatment and a work crisis collided, and for the first time in ten years, I couldn’t keep my illness and my job in separate lanes. Nothing broke, but the fear did. This is an honest reflection on capacity versus commitment, the invisible stakes of health and work, and what it feels like when the margin you depend on suddenl...

Managing multiple doctors with a rare disease or chronic illness is complicated, confusing, and honestly, exhausting. In this episode, I talk about what it’s really like to juggle doctors who don’t talk to each other — from conflicting advice and duplicate lab tests to the emotional toll of telling your story over and over again. I share the strategies that help me stay (somewhat) sane, like keeping my own records, maintaining a ma...

In this episode, I explore what it really means to change jobs when you’re living with a chronic illness. For me, it’s not just about a new role—it’s about whether my health and my coverage will hold steady. I talk through the tough parts and I share how to plan ahead so you don’t get caught in a coverage gap, and the emotional weight of navigating it all. I also walk through my own solution—a job transition binder packed with medi...

Traveling with a rare disease isn’t simple—especially when your medication has to stay cold. In this episode, I share the real challenges of flying with Mycosis Fungoides, from packing syringes and sharps containers to navigating TSA rules. I talk about the hotel fridge disaster that forced me to upgrade to a TSA-approved cooler and why planning ahead is the key to stress-free travel. Most of all, I remind you: don’t let fear of co...

In this episode, I share a recent experience that was far more than “scanxiety.” After a routine check-in revealed rapidly spreading skin patches, extreme fatigue, drenching sweats, and liver numbers that tripled in four weeks, my doctor paused my treatment and ordered a PET/CT scan to see if my Mycosis Fungoides had spread internally.

I walk you through the fear that set in—fear that felt different from worry—plus what it’s like t...

Big news, I've joined the Board of Directors for the Cutaneous Lymphoma Foundation, and in this episode, I'm sharing why that matters and what it means for patients like us. I talk abou twhy having actual patients at the table where decisions are made is critical, and how this foundation how been fighting for us since the 1990s, thanks to trailblazers like Judy Jones and Judith Shea.

I dig into what the foundation really does—conne...

In this episode, I break down why advocacy isn't just a buzzword. It's a lifeline for those of us living with rare diseases and chronic illness. I talk about how real change doesn't only come from big moments on Capitol Hill, it starts in the everyday: telling your story, joining forces with patient groups, challenging broken systems.  I get real about how speaking up, educating others, and writing to lawmakers can actually move t...

In this episode, I discuss the impact of chronic illness on daily life, focusing on the emotional significance of small pleasures. I share my experience with Mycosis Fungoides, a rare skin lymphoma, and how it affected my ability to enjoy something as simple as a hot bath.

After more than a year of painful patches and (finally!) eight weeks of treatment with Pegasys Interferon, my condition improved, allowing me to take a hot bath ...

I’m talking about something I call the “mulligrubs” — that weird, heavy feeling when you’re not exactly miserable, but definitely not great either. You know, when everything just feels off. I dive into some of the reasons we can land in a mulligrub state, like brain chemistry, crummy weather, chronic illness, and plain old mental overload. I also share a few strategies that help me shake it off (or at least soften it)...

In this episode of Fine, But Not Fine, I’m digging into the words we use to describe people living with chronic or incurable illnesses — terms like “warrior,” “fighter,” and “survivor.” While I know these words are meant to inspire and uplift, they often don’t reflect what daily life with a chronic illness actually feels like. Most days aren’t epic battles — they’re routines filled with managing symptoms, navigating h...

Living with a rare disease isn’t just a medical battle — it’s a financial one too. In this episode, I open up about the hidden costs of managing Mycosis Fungoides, a rare form of cutaneous T-cell lymphoma. I share how, even with insurance, I pay more than $3,500 a year out-of-pocket for prescriptions and specialist visits — not counting additional expenses like dental care, vision needs, and over-the-counter medicatio...