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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.
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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.
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