Archives
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Ten Years Later and I’m Still Here – Ep. 18
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’m opening up about what a decade with a rare, chronic illness really looks like. From the highs of hope with light therapy and interferon to the frustrating plateaus and setbacks, I’m sharing the raw truth: the path is winding, unpredictable, and often lonely.
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I’ve Joined the Board of Directors of the Cutaneous Lymphoma Foundation – Ep. 17
'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.
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Why Advocacy Matters – Ep. 16
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.
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What is a Specialty Pharmacy? – Ep. 15
Ever wonder why your medication has to come from one specific place, arrives with tons of instructions, or can’t be picked up at your local pharmacy? In this episode, I break down what a specialty pharmacy is, why they matter for rare disease patients like me, and how frustrating they can be when you’re just trying to get your meds on time. From endless phone tag to high-stakes meds that require refrigeration, handling, or importation, I share real stories that highlight the human side of this system—and how it sometimes forgets about, well… the human. If you’ve ever waited by the phone for a pharmacy call or been bounced around by your insurance company, this one’s for you.
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Chronic Illness: Missing the Little Things – Ep. 14
In this episode, I'm not talking about insurance battles or medication side effects. I'm talking about something much smaller—a bath. Not a metaphorical bath. A real one. And how something that simple, that ordinary, can feel like everything when you're living with a rare disease. Sometimes, it's not the big victories that keep you going. It's the tiny, quiet moments you didn't realize you missed.
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Surviving the Mulligrubs: When You’re Just…Meh -Ep. 13
Ever feel off but can’t explain why? That weird, aimless funk has a name—the mulligrubs. In this episode, I break down why they hit, how to cope, and why sometimes the best move is mac and cheese and zero guilt.
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Fighter, Survivor, Warrior: Rethinking Illness Language – Ep. 12
Rethink the language of illness. This episode explores why words like "warrior" or "fighter" don't always fit life with a chronic or rare disease.
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The Hidden Price Tag: Chronic Illness and the Financial Cost – Ep. 11
On this episode of Fine, But Not Fine, I share what it really costs to live with Mycosis Fungoides — a rare lymphoma. I spend at least $3,500 a year out-of-pocket on prescriptions and specialist visits, not counting dental, vision, or everyday medications. I dive into the hidden financial and time costs of chronic illness, the challenge of unexpected expenses, and why planning ahead is critical — even when it feels overwhelming.
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Advice I’d Give My Newly Diagnosed Self – Eps. 10
This podcast 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’renewly 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.
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Managing Medications: It’s Like a Second Job – Eps. 9
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.