https://www.podbean.com/media/share/pb-e4gup-19b156a

Managing multiple doctors with a rare disease or chronic illness is complicated, confusing, and honestly, exhausting. In this episode, I talk about what it’s really like to juggle doctors who don’t talk to each other — from conflicting advice and duplicate lab tests to the emotional toll of telling your story over and over again. I share the strategies that help me stay (somewhat) sane, like keeping my own records, maintaining a master medication list, and advocating out loud — even when it feels pushy. 

https://www.podbean.com/media/share/pb-96729-19b1458

The holidays don’t have to be perfect to be joyful, especially when you’re living with a rare disease or chronic illness. In this episode, I share how I’ve learned to let go of stress, overspending, and obligation — from going out for Thanksgiving dinner to skipping holiday travel — and focus instead on peace, connection, and real joy.

https://www.podbean.com/media/share/pb-cjjxx-198273b

In this episode, I open up about rare disease fatigue—physical exhaustion from treatment, the emotional weight of constant advocacy, and the endless admin grind of managing care. I share what triggers burnout, how I cope through energy management, creativity, and support, and why hitting a wall isn’t failure—it’s a signal to rest and rebuild.

https://www.podbean.com/media/share/pb-6dxhb-198247a

In this episode, I explore what it really means to change jobs when you’re living with a chronic illness. For me, it’s not just about a new role—it’s about whether my health and my coverage will hold steady. I talk through the tough parts and I share how to plan ahead so you don’t get caught in a coverage gap, and the emotional weight of navigating it all. I also walk through my own solution—a job transition binder packed with medical and insurance details—and why leaning on HR, advocacy groups, and your support system can make the whole process survivable.

https://www.podbean.com/media/share/pb-fqv48-194c078

Traveling with a rare disease isn’t simple—especially when your medication has to stay cold. In this episode, I share the real challenges of flying with Mycosis Fungoides, from packing syringes and sharps containers to navigating TSA rules. I talk about the hotel fridge disaster that forced me to upgrade to a TSA-approved cooler and why planning ahead is the key to stress-free travel. Most of all, I remind you: don’t let fear of complications keep you from seeing the world.

https://www.podbean.com/media/share/pb-hg8sj-194bff1

In this episode, I share what volunteering has taught me while living with Mycosis Fungoides. From the General Federation of Women’s Clubs to the Cutaneous Lymphoma Foundation, I’ve seen how giving back builds connection, skills, and visibility—but only if you protect your energy. I talk about choosing roles that lift you up, setting boundaries, and how volunteering reminds me I’m more than my illness.

https://www.podbean.com/media/share/pb-adbyz-19354a1

In this episode, I share a recent experience that was far more than “scanxiety.” After a routine check-in revealed rapidly spreading skin patches, extreme fatigue, drenching sweats, and liver numbers that tripled in four weeks, my doctor paused my treatment and ordered a PET/CT scan to see if my Mycosis Fungoides had spread internally.

I walk you through the fear that set in—fear that felt different from worry—plus what it’s like to go through the process at Duke’s Cancer Center, from prep instructions and quirky waiting room details to the barium drink, the big scanner “donut,” and even the surprising Carolina-blue ceiling panel. Most of all, I talk about how it felt to sit in that space, knowing that the results could change my life in an instant.

https://www.podbean.com/media/share/pb-igaiy-190f129

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 open up about what a decade with a rare, chronic illness really looks like. I’ve learned that surviving isn’t enough. You’ve got to find a way to live, loudly, bravely, and with purpose. And it’s why I’ve stepped up as a voice for change.

https://www.podbean.com/media/share/pb-zaig3-190cee4

Big news, I’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. I talk abou twhy having actual patients at the table where decisions are made is critical, and how this foundation how been fighting for us since the 1990s, thanks to trailblazers like Judy Jones and Judith Shea.

I dig into what the foundation really does—connecting people to specialists who understand this rare disease, hosting educational events that actually help, and going to bta for lifesaving medications. We’re also pushig for more research funding, helping patients find clinical trials, and working alongside other groups to create change.

https://www.podbean.com/media/share/pb-qn368-190ce9b

In this episode, I break down why 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. 

I get real about how speaking up, educating others, and writing to lawmakers can actually move the needle. Advocacy isn’t about being loud, it’s about being relentless, informed, and united. If you’ve ever wondered whether your voice matters, this episode is for you. Because it absolutely does.