Rarely Typical Podcast

Nobody warns you about this part. The diagnosis is one thing. The treatment plan is one thing. But the constant, relentless, never-ending inconvenience of building your entire life around a chronic illness? That part you just have to figure out as you go. In this episode Gerry gets into what it actually looks like when being chronically ill means being chronically inconvenienced, not just sometime...

Nobody hands you a job description when you get diagnosed with a chronic illness. One day you’re just living your life, and the next you’re coordinating care between multiple specialists, managing specialty pharmacy deliveries, navigating prior authorizations, and figuring out how to actually get someone on the phone at your insurance company. No training. No onboarding. Just you, doing your best....

In this episode of Rarely Typical, I’m getting honest about something I think so many of us feel but don’t always say out loud, burnout. Not just chronic illness burnout, but life burnout. The kind that touches everything, your energy, your motivation, your creativity, and even the things you once felt called to share. I open up about why my content has been quieter lately and the tension I’ve bee...

Not going to lie, the video on this is subpar, but if you’re listening to the podcast, at least that works! Ha. I promised myself this year I would worry less about curating the content and just produce the content. ALSO, LOL, this is season 4, whoops. So here it is, a full rundown of how the transition went from the CADD MS3 pump to the new Remunity Pro pump. Thanks for listening and subscribing,...

In this amazing episode, I sit down with my friend Eric Borstein, the founder of Where Is EB? , to talk about life with Pulmonary Arterial Hypertension from a perspective the community does not often get to hear. PAH overwhelmingly affects women, so Eric walks us through what it has been like to navigate a rare disease in a demographic that rarely sees itself represented. Eric shares the story beh...

In this episode of Rarely Typical , I sit down with my friend Jenna to talk all things traveling with Pulmonary Arterial Hypertension (PAH) . When you live with a rare disease, the idea of traveling can feel overwhelming — from packing medications and managing oxygen, to handling airports and unexpected flares. But over the years, both Jenna and I have learned how to make travel not only doable bu...

When you’re first diagnosed—or even when something just feels “off”—your journey often starts in your primary care doctor’s office. But what happens when your primary care provider suspects something more complex and refers you to a specialist? In this episode of Rarely Typical , I sit down with Dr. Peter Hountras and Stacy Hountras, NP, to break down what that process really looks like. We talk a...

In this episode of Rarely Typical , I sit down with friends in the PAH community, Chelsea + Lisa, to talk about what it really looks like to balance work and Pulmonary Arterial Hypertension. We share candid conversations about the challenges of managing symptoms, juggling frequent doctor’s appointments, and even recovering from surgeries—all while trying to maintain a career. We dive into the impo...

Seven years ago, what I thought would be a quick trip to the ER turned into a life-changing moment—a diagnosis that would forever alter my life. In this special episode, I’m reflecting on my 7 year diagnosi-versary and the journey that’s unfolded since. I share how I first stepped into advocacy, what pushed me to use my voice, and the lessons I’ve learned along the way—both about myself and about...

What does it look like to choose worship in the middle of your storm? In this episode, I sit down with Brinnae Keathley from Red Rocks Worship to talk about finding joy in the middle of hardship, and how God meets us right in our mess. Brinnae shares her own journey of faith, music, and holding onto hope when circumstances don’t look like what you imagined. Together, we explore how worship isn’t a...

In this powerful and deeply personal episode, I sit down with my friend Lisa to share a story that very few people — and even fewer medical professionals — truly understand. Lisa lives with pulmonary arterial hypertension (PAH) and a congenital heart defect, and she faced one of the most high-risk situations imaginable: pregnancy with PAH. Lisa walks us through her journey, from navigating her con...

In the season 2 finale of Rarely Typical , I sit down with my friend Shanna, the person who first encouraged me to pursue a clinical trial. With experience in three different trials, Shanna brings wisdom, honesty, and encouragement to the table. We talk about: * How her clinical trial experiences shaped her journey with chronic illness * What to look out for and take notes on when researching tria...

In this episode of Rarely Typical , I’m pulling back the curtain on my own journey as a participant in the sotatercept (Winrevair) clinical trial for Pulmonary Arterial Hypertension (PAH). I share what a clinical trial actually is, why it’s such an important step in advancing treatment options, and why the sotatercept trial had the PAH community buzzing with hope. From there, I walk you through my...

In this episode of Rarely Typical , Gerry sits down with her own PH specialist, Dr. John Moss , to talk all things clinical trials . Together, they unpack the importance of participating in research , how clinical trials work , and the patient-doctor collaboration that makes it all possible. Dr. Moss shares his insight from years in research and care, and Gerry reflects on how clinical trials—espe...

In this honest and deeply relatable episode of Rarely Typical , Gerry is joined by her friend and fellow rare disease mom, Chelsea Price , for a raw conversation about parenting while living with a chronic illness . Together, they talk about: * What it looks like to show up as a parent on the hard days * How disease progression affects energy, routines, and mental load * The emotional weight of wa...

In this powerful episode of Rarely Typical , I sit down with my dear friend Jordan to talk about a topic that is often overlooked—what it’s like to raise a child with a chronic illness when you don’t have one yourself. Jordan opens up about her daughter’s diagnosis with Marfan syndrome , a rare connective tissue disorder, and the emotional weight of navigating this new world as both a caregiver an...

In this heartfelt and deeply needed episode, I’m joined by my best friend and licensed therapist, Livia Kubica , to talk about what true support looks like when your friend is living with a chronic illness. We break down the real meaning of holding space , why empathy matters more than fixing things, and how to be a reliable presence—not just in words, but in action. We talk about the emotional la...

In this episode, Gerry sits down with internal medicine physician Dr. Shaila Siraj to talk about something we don’t talk about enough in healthcare: compassion . This episode explores how empathy and human connection must flow both ways— from doctor to patient, and from patient to doctor . They dive into what it really means to create emotional safety in a clinical space, how doctors can stay grou...

In this episode of Rarely Typical , I sit down with two of the doctors who have played pivotal roles in my journey—Dr. Peter Hountras, my diagnosing physician, and Dr. John Moss, my current PH specialist. We dive into the power of collaboration in medicine and how compassionate care and teamwork between providers can radically improve a patient’s experience and outcome. We talk about: * How collab...

In this heartfelt episode of Rarely Typical , I’m joined by not only one of my best friends, but also licensed therapist Livia Kubica , for a deep and honest conversation about mental health in the context of chronic illness and rare disease. We talk about the emotional toll of receiving a diagnosis, the grief that follows, and how chronic illness can affect every part of your mental well-being. L...

Welcome back! When you live with a chronic illness, it’s easy to feel like your diagnosis defines you. In this heartfelt Season 2 premiere of Rarely Typical , Gerry explores the importance of remembering who you are outside of your disease. Because while chronic illness may shape our daily lives, it is not the sum total of who we are. Gerry reflects on her own journey of rediscovery after being di...

In this mini-episode, Gerry reflects on the end of Season 1 of Rarely Typical . She shares her deep gratitude for every listener, guest, and supporter who has helped bring this podcast to life—and teases the exciting things to come in Season 2. But more than anything, this episode is a reminder: it’s okay to pause. In a world that praises busyness, Gerry gets real about choosing stillness in a sea...

In this powerful and heartfelt episode of Rarely Typical , I sit down with one of my best friends, Sarah Evans—an osteosarcoma survivor and amputee—to talk about what it’s like living with a visible disability versus an invisible one. We unpack the unique challenges and misconceptions that come with both experiences—from stares and assumptions to being overlooked entirely. Whether your illness is...

In this heartfelt episode of Rarely Typical , I sit down with my diagnosing doctor, Dr. Hountras, to share both sides of the journey that led to my pulmonary arterial hypertension (PAH) diagnosis. We dive into how divine timing played a role—how God had everything in motion long before either of us arrived in Colorado. From God’s intricate planning to the importance of collaborative care, this con...

In this heartfelt episode of Rarely Typical , my husband, Jason, and I sit down to reflect on the unexpected journey that led us to Colorado—a move that, in hindsight, was divinely orchestrated for me to receive my life-changing diagnosis. We discuss how this path has strengthened our faith, tested our vows, and deepened our understanding of what it truly means to be a caregiver and a partner. Jas...