Treatment
-
High Liver Enzymes on Interferon: Why I Had to Stop Treatment
When interferon raised my liver enzymes, I had to stop cancer treatment and see a liver specialist. The waiting, the testing, and getting real answers.
-
150 Appointments: What Rare Disease Treatment Actually Costs, Ep. 32
150 in-office appointments in a single year for rare disease treatment. Three days a week, every week, driving to another city because there's no NBUVB light where I live — or where I work. In this episode I'm talking about what treatment actually costs: the miles, the time, the scheduling, the money. And the harder question underneath all of it — whose job actually lets them do this? Because not everyone has the flexibility I do. And that matters.
-
Traveling With a Rare Disease – Episode 21
Kelly Paul shares tips for traveling with Mycosis Fungoides—managing refrigerated meds, TSA rules, and planning for stress-free trips.
-
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.
-
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.
-
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.