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 sometimes, but all the time, in ways big and small that never fully let up.

She talks about what it’s like to have kids get sick when your own immune system isn’t something you can afford to gamble with, the mental math that runs underneath every normal parenting moment when you have PAH. She also gets into having to make multiple trips to Mayo Clinic in Jacksonville, two and a half hours away, because local hospitals and surgical centers won’t take her due to her medical history. And she talks about what it’s like to live with a calendar that never really empties out, appointments stacked on appointments, with no finish line in sight.

This one is for every patient who is tired of adjusting and doing it anyway.

In this episode:

Why chronic illness means chronic inconvenience and not just around the big stuff, what it’s actually like to have sick kids in the house when you have pulmonary arterial hypertension, the reality of not being able to get basic care locally and what that costs you in time and energy, what nonstop appointments actually look like from the inside, and what Gerry wants other patients to hear when the weight of it all feels like too much.

Connect with Gerry: Instagram | Website | Tiktok

This is not medical advice and I'm not a medical professional, just a professional patient. Please speak to your doctor if you have questions about your medical care and not some stranger on the internet.

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 Gerry gets honest about what it really looks like to manage a serious diagnosis behind the scenes, and why the invisible labor of being a chronic illness patient is a full-time job nobody asked for.

She talks about what it’s been like this year trying to get a basic procedure scheduled locally, hitting wall after wall because of her medical history, and ultimately having to travel to Mayo Clinic two and a half hours away for something most people handle down the street. She also gets into what it means to keep all of the other pieces moving at the same time, the refills, the supplies, the appointments, the clinical trial, all of it, while still trying to just be a person.

If you are a patient who is tired in a way that sleep doesn’t fix, this one is for you.

In this episode:

What nobody tells you about life after a chronic illness diagnosis, the real behind-the-scenes of managing PAH treatment and care, what happened when two local facilities turned Gerry away for a routine procedure, why coordinating your own care sometimes feels like guessing with high stakes, and what Gerry wants other patients to hear when it all feels like too much.

Connect with Gerry: @itsgerrylangan on Instagram, TikTok and YouTube.

This is not medical advice and I’m not a medical professional, just a professional patient. Please speak to your doctor if you have questions about your medical care and not some stranger on the internet.

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 been living in. On one hand, I’ve been experiencing more good days, days where I feel healthy, present, and able to just live my life. And on the other hand, showing up to talk about chronic illness during those moments can feel like a buzzkill, like I’m pulling myself back into something heavy when I finally have a little space to breathe. (Literally and figuratively)

I talk about the emotional weight of always being the “voice” for something hard, the pressure to keep showing up, and what it looks like to give yourself permission to step back without guilt.

This episode is for anyone who feels stretched thin, who is tired in more ways than one, and who is trying to figure out how to hold both gratitude and exhaustion at the same time.

There is space for both.

And maybe this part of the story, the stepping back, the living, the choosing joy when you can, is just as important as the parts where we fight and advocate.

What You’ll Hear in This Episode:

* What chronic illness burnout actually feels like

* Why I’ve been pulling back from content

* The tension between advocacy and actually living your life

* Learning to enjoy good days without guilt

* Why this season still matters, even if it looks different

Disclaimer: I’m not a medical professional, just a professional patient. Rarely Typical is based on my personal experiences and is not intended to be medical advice. Always consult with a qualified healthcare professional for any medical concerns or decisions.

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, follow along for more! Read the blog post for this podcast episode here: Podcast Episode Blog post

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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 behind his diagnosis, the uncertainty that came with it, and the moment he realized he needed a path forward that felt empowering, not limiting. Walking became that path. We talk about how putting one foot in front of the other shifted his physical health, mental health, and outlook on what is possible while living with PAH.

We also unpack the emotional weight of being a male patient in a predominantly female disease space, the pressure to appear strong, and how vulnerability became a lifeline. Eric opens up about mental health, identity, and the balance between being hopeful and being honest about the hard days.

Whether you live with PAH or any chronic illness, love someone who does, or simply want to hear an inspiring and deeply human story about resilience and redefining strength, this conversation will stay with you.

Thanks for joining me, EB, you’re the best!

Links:

Where is EB? | Eric’s Nonprofit Organization

Follow Eric on Instagram here!

Disclaimer: I’m not a medical professional, just a professional patient. Rarely Typical is based on my personal experiences and is not intended to be medical advice. Always consult with a qualified healthcare professional for any medical concerns or decisions.

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 but genuinely enjoyable again.

We share how our confidence has grown through experience, the lessons we’ve learned the hard way, and how we’ve each adapted our routines so we can continue exploring the world. You’ll hear our best practical tips for preparing for trips, managing hiccups on the go, and setting yourself up for success when things don’t go as planned.

If you’ve ever thought, “I wish I could travel, but my illness makes it too complicated,” this episode will remind you that with the right preparation, intentionality and mindset, it’s absolutely possible.

What You’ll Learn:

* How to prepare for travel with medications, oxygen, and medical equipment

* What to communicate with your doctor before travel

* How experience helps reduce fear and builds travel confidence

* Tips for finding joy and flexibility when things go off-plan

Follow Jenna on Instagram at @travelingwithoutboundaries

Disclaimer: I’m not a medical professional, just a professional patient. Rarely Typical is based on my personal experiences and is not intended to be medical advice. Always consult with a qualified healthcare professional for any medical concerns or decisions.

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 about how and why patients are referred to specialists (in my case a pulmonary arterial hypertension (PAH)) why tests often get repeated when you transition to specialty care, and what you can expect at those first few appointments. For patients and caregivers, this episode offers a clear roadmap to navigating referrals, and for providers, it’s a reminder of how overwhelming this process can feel for patients walking through it for the first time.

If you’ve ever wondered: Why am I seeing another doctor? Why are they redoing my tests? What should I expect from this referral? — this episode will give you clarity and reassurance.

Whether you’re a patient newly referred to a specialist, a caregiver helping someone through the process, or a provider wanting to improve the referral experience, this conversation is filled with practical insights and encouragement.

Disclaimer: I’m not a medical professional, just a professional patient. Rarely Typical is based on my personal experiences and is not intended to be medical advice. Always consult with a qualified healthcare professional for any medical concerns or decisions.

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 importance of workplace accommodations, the role of flexibility, and how to have honest conversations with employers about your needs. We also share practical advice for others navigating their own careers while managing PAH—reminders that you can still find purpose and meaning in your work, even if it looks different than you first imagined.

Whether you’re newly diagnosed, in the middle of your career, or supporting someone with PAH, this conversation offers both hope and tangible tools for making work more sustainable alongside chronic illness.

Disclaimer: I’m not a medical professional, just a professional patient. Rarely Typical is based on my personal experiences and is not intended to be medical advice. Always consult with a qualified healthcare professional for any medical concerns or decisions.

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 living with a chronic, life-threatening illness. I also talk openly about facing mortality at a young age, and how answering the question, “What’s your goal?” shaped not only my advocacy but the way I choose to live my life every day.

If you’ve ever wondered why I do what I do, or how I got started doing this, this episode is me sharing my heart with you.

✨ What you’ll hear in this episode:

* Why I started advocating and what advocacy has taught me

* The biggest lessons I’ve learned in 7 years of living with PAH

* How facing mortality gave me clarity on my purpose

* What I’ve discovered about hope, resilience, and legacy

Disclaimer: I'm not a medical professional, just a professional patient. Rarely Typical is based on my personal experiences and is not intended to be medical advice. Always consult with a qualified healthcare professional for any medical concerns or decisions.

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 about pretending everything is perfect, but about bringing our whole selves—pain, questions, and all—before God. This conversation is an encouragement for anyone walking through a difficult season, reminding us that joy can exist alongside grief and that God doesn’t wait for us to be “put together” before He shows up.

What You’ll Learn in This Episode:

* How worship can be a lifeline during times of suffering.

* Why joy isn’t the absence of hardship, but something we can discover in the middle of it.

* Practical ways to feel God in your mess instead of waiting until life feels “cleaned up.”

* The power of honesty, vulnerability, and community in faith.

Resources & Links:

* Follow Red Rocks Worship here.

* Listen to Red Rocks Worship on Spotify or Apple Music.

* Check out Red Rock Worship’s upcoming tour here.

* Connect with me on Instagram: @itsgerrylangan.