The Fine, But Not Fine Podcast

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.

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 suddenly disappears. There’s no takeaway—just the truth of sitting with it.

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 master medication list, and advocating out loud — even when it feels pushy. 

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 transition binder packed with medical and insurance details—and why leaning on HR, advocacy groups, and your support system can make the whole process survivable.

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 complications keep you from seeing the world.

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 illness.

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 to go through the process at Duke’s Cancer Center, from prep instructions and quirky waiting room details to the barium drink, the big scanner “donut,” and even the surprising Carolina-blue ceiling panel. Most of all, I talk about how it felt to sit in that space, knowing that the results could change my life in an instant.

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 what the foundation really does—connecting people to specialists who understand this rare disease, hosting educational events that actually help, and going to bta for lifesaving medications. We're also pushig for more research funding, helping patients find clinical trials, and working alongside other groups to create change.

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 the needle. Advocacy isn't about being loud, it's about being relentless, informed, and united. If you've ever wondered whether your voice matters, this episode is for you. Because it absolutely does.

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 improved, allowing me to take a hot bath again. This simple act brought me unexpected joy and highlighted the importance of recognizing and celebrating small victories in managing chronic illness.

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), like knocking out tiny tasks, getting my body moving, changing my environment, or just leaning into comfort. Most importantly, I remind you — and myself — that it’s okay to feel this way sometimes. It doesn’t mean you’re failing. Sometimes the best thing you can do is name it, honor it, and give yourself a little grace. I’d love to hear your favorite ways to deal with the mulligrubs, too — let’s keep this conversation going.

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 healthcare, and just getting through. I share why I prefer words like “navigating,” “managing,” and “coping,” and why it’s so important for each of us to define our own experience, without feeling boxed in by someone else’s idea of strength. If you’ve ever felt weird about being called a “fighter” when you were just trying to make it through a Tuesday, you’re not alone.

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 medications. I also cover the challenges of budgeting with a flexible spending account (FSA), the stress of surprise medical bills, and the critical role of pharmaceutical financial assistance programs. I shed light on the often invisible financial and emotional toll chronic illness takes, offering real talk on why planning ahead matters — and why no one should have to navigate it alone. If you or someone you love is juggling rare disease costs, this candid conversation is for you.

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.

Ever wondered how to deal with misguided advice and intrusive questions from well-meaning people when dealing with a serious or chronic illness? In this episode, I outline strategies for rejecting bad advice and setting boundaries while maintaining kindness.

In this episode, I talk about Prior Authorization, what it is, how it works, how insurers use it, and why it is a major hurdle to medical care for rare and chronic disease. I also share my personal experience with prior authorization denials, including how I had to escalate one to the North Carolina Insurance Commissioner.

In this episode of Fine, But Not Fine, I’m sharing my journey with Narrowband UVB light therapy—how I started, how I adapted, and how I made it work for me. At first, this treatment meant driving to my doctor’s office three times a week, juggling appointment scheduling, and reshaping my daily routine around it. But after a year, I transitioned to a home light unit—a total game-changer that gave me flexibility, saved me hours of commuting, and allowed me to take control of my treatment.

In this episode of Fine, But Not Fine, I’m diving into the complicated relationship between body image and chronic illness, sharing my experience living with Mycosis Fungoides, a rare form of Cutaneous T-Cell Lymphoma. I talk about the emotional toll of having a visible condition, the moment I decided to stop hiding my skin, and the ongoing struggle between acceptance and self-love. I also share how exercise has helped both my health and mindset, the importance of finding supportive spaces, and why we need to have more open conversations about cancer and chronic illness.

In this episode of Fine, But Not Fine, we tackle one of the most critical aspects of managing a rare disease: finding the right doctor. If you’ve ever left an appointment feeling unheard or dismissed, you’re not alone. Not all doctors are created equal, and building the right medical team takes effort. I share my personal experiences—from a dermatologist who completely ignored my concerns to the doctor who truly listened and changed my treatment path. Along the way, I break down: •Red flags that signal a bad doctor. •Green flags that indicate a great doctor. •How to find a specialist, especially for a rare disease. •Why building a medical team is a long-term process and how my care has evolved over time. I also discuss how my first dermatologist failed me, why my second doctor changed everything, and how I eventually transitioned to a specialist at Duke for advanced treatment. Throughout this journey, I’ve learned that the right doctor isn’t just someone who prescribes medication—they take the time to listen, investigate, and care about your long-term well-being. If you’re struggling with a dismissive doctor, trust your gut—you deserve better.

In this episode of Fine, But Not Fine, we dive into one of the biggest dilemmas for people with rare and chronic illnesses: Should you tell your employer about your diagnosis?   I share my personal experience with disclosure—why I chose to be open about my rare disease, how my work culture made that decision easier, and the benefits and challenges I faced. But this decision isn’t one-size-fits-all. We explore the pros and cons of disclosure, from gaining workplace accommodations and reducing stress to the risks of stigma and privacy concerns.

Mycosis Fungoides—it sounds rare because it is. In this episode, I break down what this disease actually is, how it affects the body, and what it’s like to live with a cancer most people have never heard of. I’ll share my diagnosis journey, the symptoms that led me here, and the challenges of navigating treatment options for a condition that doesn’t have a one-size-fits-all approach. Whether you’re newly diagnosed, know someone with it, or just want to understand more about rare diseases, this episode is your crash course in Mycosis Fungoides.

Living with a rare disease isn’t just about medical appointments and treatments—it’s about navigating a world that doesn’t always understand what you’re going through. In this first episode, I share my story, why I started this podcast, and what Fine, But Not Fine is all about. We’ll talk about the realities of life with a rare disease, from insurance battles to career challenges, and why saying “I’m fine” doesn’t always mean we are. If you’ve ever felt unseen in your healthcare journey, this podcast is for you. Let’s talk, vent, and figure it out together.