The Fine, But Not Fine Podcast

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...

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 flexib...

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 helpe...

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 w...

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-f...

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 wit...

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 ar...