Rarely Typical Podcast

S4:E4, Chronically Ill, Chronically Inconvenienced

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 [https://www.instagram.com/itsgerrylangan] | Website [http://www.gerrylangan.com] | Tiktok [https://www.tiktok.com/@itsgerrylangan] 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. Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe [https://itsgerrylangan.substack.com/subscribe?utm_medium=podcast&utm_campaign=CTA_4]

S4:E3, Chronic Illness Patient, A Job I Never Applied For

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. Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe [https://itsgerrylangan.substack.com/subscribe?utm_medium=podcast&utm_campaign=CTA_4]

S4:E2 Chronic Illness Burnout is Real

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. Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe [https://itsgerrylangan.substack.com/subscribe?utm_medium=podcast&utm_campaign=CTA_4]

S4:E1, From the CADD MS3 to the Remunity Pro transition

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 [https://open.substack.com/pub/itsgerrylangan/p/new-year-new-pump-same-reflections?r=2h1xdp&utm_campaign=post&utm_medium=web] g. Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe [https://itsgerrylangan.substack.com/subscribe?utm_medium=podcast&utm_campaign=CTA_4]

S3:E7, Living Strong with PAH: Walking, Mental Health, and Redefining Strength, with Eric Borstein

In this amazing episode, I sit down with my friend Eric Borstein, the founder of Where Is EB? [http://whereiseb.org], 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? [http://whereiseb.org] | Eric’s Nonprofit Organization Follow Eric on Instagram here! [https://www.instagram.com/where_is_eb/] 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. Get full access to Rarely Typical, by Gerry Langan at itsgerrylangan.substack.com/subscribe [https://itsgerrylangan.substack.com/subscribe?utm_medium=podcast&utm_campaign=CTA_4]