The Fine, But Not Fine Podcast

Coping With "You Should Try This" Advice - Eps. 8

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.

Prior Authorization: The Health Insurer Bureaucracy Blocking Your Care - Eps. 7

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.

My Experience with Narrowband UVB (NBUVB) Light Therapy - Eps. 6

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.

Rare Disease and Body Image - Eps. 5

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.

Finding the Right Doctor - Ep. 4

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.

Should You Disclose Your Rare Disease at Work - Ep. 3

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.

What is Mycosis Fungoides? - Ep. 2

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.

Fine, But Not Fine - Introduction, Ep. 1

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.