Archives
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Coping With “You Should try This” Advice – Ep. 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.
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Prior Authorization: The Health Insurer Bureaucracy Blocking Your Care – Ep. 7
In this podcast 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.
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My Experience with Narrowband UVB (NBUVB) Light Therapy – Ep. 6
I’m sharing my journey with Narrowband UVB (NBUVB) light therapy—how I started, how I adapted, and how I made it work for me.
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Rare Disease and Body Image – Ep. 5
In this episode, I explore the relationship between chronic illness, rare disease and body image, particularly how living in a body that doesn't look or feel the way one wants can impact self-perception.
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Finding the Right Doctor – Ep. 4
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.
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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 […]
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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.
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Introduction
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.