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.

https://www.podbean.com/media/share/pb-ya6hn-18d47f1

Specialty pharmacies handle complex meds—but for patients, they often create more stress than support. In this episode, I unpack what they are, why they exist, and the real-life frustrations that come with them. From phone tag and refill delays to meds that require special handling, I share how the system often overlooks the patient experience.

https://www.podbean.com/media/share/pb-w3ecx-18afb36

In this episode, I discuss the impact of chronic illness on daily life, focusing on the emotional significance of small pleasures. I share my experience with Mycosis Fungoides, a rare skin lymphoma, and how it affected my ability to enjoy something as simple as a hot bath.

After more than a year of painful patches and (finally!) eight weeks of treatment with Pegasys Interferon, my condition improved, allowing me to take a hot bath again. This simple act brought me unexpected joy and highlighted the importance of recognizing and celebrating small victories in managing chronic illness.

https://www.podbean.com/media/share/pb-vhdzp-1883610

I’m talking about something I call the “mulligrubs” — that weird, heavy feeling when you’re not exactly miserable, but definitely not great either. You know, when everything just feels off. I dive into some of the reasons we can land in a mulligrub state, like brain chemistry, crummy weather, chronic illness, and plain old mental overload. I also share a few strategies that help me shake it off (or at least soften it), like knocking out tiny tasks, getting my body moving, changing my environment, or just leaning into comfort. Most importantly, I remind you — and myself — that it’s okay to feel this way sometimes. It doesn’t mean you’re failing. Sometimes the best thing you can do is name it, honor it, and give yourself a little grace. I’d love to hear your favorite ways to deal with the mulligrubs, too — let’s keep this conversation going.

https://www.podbean.com/media/share/pb-6umuf-18835ef

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 medications.

I also cover the challenges of budgeting with a flexible spending account (FSA), the stress of surprise medical bills, and the critical role of pharmaceutical financial assistance programs. I shed light on the often invisible financial and emotional toll chronic illness takes, offering real talk on why planning ahead matters — and why no one should have to navigate it alone. If you or someone you love is juggling rare disease costs, this candid conversation is for you.

https://www.podbean.com/media/share/pb-duwka-185df2b

Today’s episode is a letter to the version of me who had just been diagnosed. She was scared, overwhelmed, Googling way too much, and had no idea what the next year—let alone the rest of her life— was going to be like. Whether you’re newly diagnosed yourself or supporting someone who is, I hope this gives you some grounding and comfort. Because if I could go back, this is what I’d say.