The Fine, But Not Fine Podcast

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...

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 taug...

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...

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 thi...

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 wh...

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 keepi...

The holidays don’t have to be perfect to be joyful, especially when you're living with a rare disease or chronic illness. In this episode, I share how I’ve learned to let go of stress, overspending, and obligation — from going out for Thanksgiving dinner to skipping holiday travel — and focus instead on peace, connection, and real joy.

In this episode, I open up about rare disease fatigue—physical exhaustion from treatment, the emotional weight of constant advocacy, and the endless admin grind of managing care. I share what triggers burnout, how I cope through energy management, creativity, and support, and why hitting a wall isn’t failure—it’s a signal to rest and rebuild.

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...

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,...

In this episode, I share what volunteering has taught me while living with Mycosis Fungoides. From the General Federation of Women’s Clubs to the Cutaneous Lymphoma Foundation, I’ve seen how giving back builds connection, skills, and visibility—but only if you protect your energy. I talk about choosing roles that lift you up, setting boundaries, and how volunteering reminds me I’m more than my ill...

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 differe...

It's been ten years since I was diagnosed with Mycosis Fungoides, and no there hasn't been a miracle cure or a neat treatment roadmap. In this episode, I open up about what a decade with a rare, chronic illness really looks like. I've learned that surviving isn't enough. You've got to find a way to live, loudly, bravely, and with purpose. And it's why I've stepped up as a voice for change.

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 wh...

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 writin...

Specialty pharmacies handle complex meds—but for patients, they often create more stress than support. In this episode, I unpack what they are, why they exist, and the real-life frustrations that come with them. From phone tag and refill delays to meds that require special handling, I share how the system often overlooks the patient experience.

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 improv...

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 (o...

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 s...

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-...

Today’s episode is a letter to the version of me who had just been diagnosed. She was scared, overwhelmed, Googling way too much, and had no idea what the next year—let alone the rest of her life— was going to be like. Whether you’re newly diagnosed yourself or supporting someone who is, I hope this gives you some grounding and comfort. Because if I could go back, this is what I’d say. 

I had no idea how complex medication management was until I had a chronic and rare disease. In this episode, I talk about medication management: keeping track of doses, dealing with pharmacies, ensuring you have the right supplies, and the craziness of the side effects lists.