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What if chronic illness showed up two months into your relationship and never left? We sit down with Kodi—writer, advocate, wife, and mom—to unpack what love, parenting, and identity look like when your body keeps rewriting the plan. It’s a raw, often funny conversation that moves from ER dismissals and misdiagnosis to the small, practical rituals that make each day livable.
Kodi breaks down the diagnoses behind her symptoms—hypermobile EDS, dysautonomia, and dystonia—and the eight-year gap before anyone named her dystonic storms. We talk about the reality of short appointments, medical bias, sensory overload in waiting rooms, and why telehealth can be a lifeline. If you’ve ever left a clinic feeling invisible, you’ll find language, validation, and next steps here: how to prioritize your top concerns, ask for concrete follow‑ups, and build a care plan that respects your limits.
We dive into identity after illness with Kodi’s deceptively simple keep–adjust–drop method. She revisits old passions, tracks how they feel now, and either keeps them, adapts them, or lets them go. Open mics became too loud; bluegrass jams with earplugs worked. Painting, puzzling, piano, and e‑biking now steady her nervous system. Think of it as a six‑inch plate—choose what truly nourishes you, and stop pretending you can carry everything. Alongside grief, humor plays a real role. Dark jokes don’t erase pain; they loosen its grip long enough to breathe, connect, and try again tomorrow.
Marriage and parenting evolve under the weight of symptoms, so we share tools that build closeness without burning out. A “transparency journal” helps trade hard truths with time to process. Bed snuggles, Lego show‑and‑tells, and couch movies turn flare days into gentle connection. Intimacy adapts by season—sometimes it’s deep talk while tag‑teaming dishes, sometimes it’s quiet presence. We also name the tradeoffs of cash‑pay therapies and frequent scans, and how choosing small, lasting joys—like watching snowfall—can change the texture of a week.
If you’re navigating endometriosis, EDS, dysautonomia, dystonia, or any chronic condition, this conversation offers honest companionship, practical advocacy tips, and a reminder that your story has value. Listen, share with someone who needs it, and leave a review so more people can find this space.
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