Zebras Underground - Patient-Powered Advocacy

Surgery in hEDS — A Full-Blown Shitsuation

Surgery in hEDS — A Full-Blown Shitsuation For most people, surgery is a medical event. For those of us with hypermobile EDS, mast cells that revolt, dysautonomia that tanks our blood pressure, and anesthesia that either ghosts us or hits like a freight train? It’s a shitsuation. In this episode, we unpack the real science (including a 2026 scoping review published in Rheumatology International) confirming what patients already know: surgical care for hEDS and HSD is under-researched, under-understood, and wildly inconsistent. We talk: -Anesthesia weirdness -Pre-op allergy chaos -Healing that doesn’t follow the brochure timeline -Pain management that misses the mark -And the emotional toll no one prepares you for This one is equal parts sass and serious strategy — because even when surgery is unpredictable, zebras still deserve relief, stability, and hope. Listen in. And bring your metaphorical index card of doom because we're laughing our ass off. That's no s**t. Get full access to Zebras Underground at zebras.substack.com/subscribe [https://zebras.substack.com/subscribe?utm_medium=podcast&utm_campaign=CTA_4]

Suspect Occult Tethered Cord in hEDS?

Suspect Occult Tethered Cord in HEDS? This episode talks about the all too common, impossible to see or correctly diagnose - occult tethered cord in hypermobile EHlers-Danlos Syndrome (EDS). Get full access to Zebras Underground at zebras.substack.com/subscribe [https://zebras.substack.com/subscribe?utm_medium=podcast&utm_campaign=CTA_4]

Podcast: Advocating on Empty

Advocating on Empty Self-advocacy when you’re exhausted, brain foggy, and living with EDS / POTS / MCAS Length: ~25 min When your brain is fuzzy and your body is fragile, navigating contradictory medical advice is exhausting — and the system too often expects you to be the translator. In this episode I read a real story (steroid → vasovagal), explain the “medical menu” metaphor, and give tiny, usable steps, scripts, and tools so you can protect your energy, get clearer documentation, and decide when to bring in advocacy help. Timestamps 0:00–0:45 — Quick validation: why this matters 0:45–3:30 — Personal anchor story: steroid → vasovagal (read verbatim) 3:30–6:00 — Why experts disagree / Medical Menu metaphor (chefs, waitstaff, accounting, diner) 6:00–12:30 — Core practical: tiny decision framework, 48–72h checklist, scripts to use in clinic 12:30–16:00 — What advocates do, when to hire, costs & payment models 16:00–19:00 — If you can’t afford an advocate: fallback options & DIY safety tips 19:00–22:00 — Emotional aftercare: advocacy hangovers, identity & boundaries 22:00–25:00 — Closing: resources, worksheet, slide, and next steps Key takeaways -Conflicting clinical opinions = clinical whiplash. That confusion is a systems problem, not a personal failure. -Patient advocates can reduce emotional and logistical load — ask “Who pays you?” to check allegiance. Where to find patient advocates (trusted directories) NOTE: I’m providing national directories below. If you want a vetted, EDS-specific advocate list (regional + telehealth options), reply and I’ll add it. National Association of Healthcare Advocacy (NAHAC) — directory of independent advocates and member profiles.https://nahac.com/directory-of-advocates [https://nahac.com/directory-of-advocates] Alliance of Professional Health Advocates (AdvoConnection / APHA) — searchable advocate listings and practitioner pages.https://aphadvocates.org [https://aphadvocates.org] Patient Advocate Foundation — nonprofit patient navigation, insurance & financial resource tools.https://www.patientadvocate.org/explore-our-resources/ [https://www.patientadvocate.org/explore-our-resources/] Patient Care Partners — research & white papers on advocacy outcomes. (Includes impact data cited in the episode.)https://patientcarepartners.org [https://patientcarepartners.org] Patient Advocate Certification Board (PACB) — info about BCPA credentialing and certificant list. Useful for verifying claims they are certified if necessary.https://www.pacboard.org [https://www.pacboard.org] Cost realities of Hiring a Patient Advocate Advocates commonly charge hourly or package rates. Range varies by region & scope; many private advocates fall roughly in the ~$50/75–$200+/hr range. If funds are tight: ask about one-time consults, targeted case reviews (MD-to-MD coordination), limited scope packages, or sliding scale options. Or contact me to do a W.R.A.P. (Wellness Recovery Action Plan) where I interview you for identifying and prioritizing your needs, conduct research and provide you an extensive report on how to navigate forward to better care. Learn more and book a consult: https://www.norbellahealthadvocates.com/christie [https://www.norbellahealthadvocates.com/christie] Ask every advocate: “Do you offer short, targeted crisis packages?” — many do. If you can’t hire an advocate — fallback options... Hospital social workers / case managers — help with discharge planning, resources, some coordination. Patient Advocate Foundation — nonprofit supports for insurance/financial navigation. Peer advocates / nonprofit navigators — disease foundations and local nonprofits sometimes offer navigation help. Ask any advocate you contact whether they offer limited pro bono or sliding-scale slots for urgent cases. Action steps (3 tiny things you can do right now) 1. Create a one-page medical for every doctor appointment 2. Track data in health wearables and apps like Guava Health or Apple Fitness 3. Pause to rest and restore when you're exhausted by self advocating and consider hiring a independent patient advocate to fight for you for a while. Credits & thanks Thank you to everyone who shared questions that shaped this episode. Forgive the imperfections.This one is for the people who are tired of being told, “Just advocate harder.” You’re already doing a lot. Get full access to Zebras Underground at zebras.substack.com/subscribe [https://zebras.substack.com/subscribe?utm_medium=podcast&utm_campaign=CTA_4]

Friday Feels: Rest Recharges Me — Unplugging the Guilt Around Doing Nothing

This week’s Friday Feels invites listeners to ditch the guilt around rest and reimagine downtime as a powerful form of medicine. We explore the invisible belief that productivity defines our worth—and how that mindset keeps many chronically ill people trapped in cycles of flare, fatigue, and frustration. Cue repeat. Drawing from the metaphor of the battery theory, we’re reminded that, just like our phones, we can’t keep running on 20%. We need to plug in, recharge, and honor our natural rhythms of rest and recovery. What You’ll Hear In This Episode: * Why “doing nothing” is actually doing something vital for your health. * The hidden roots of guilt and self-judgment around rest. * A 10-minute “conscious nap” exercise to reset your body and brain. * How metaphors like the battery can rewire your mindset and restore compassion toward yourself. * The mantra you’ll want to keep repeating: Rest recharges me. Takeaway Quote: “A depleted battery isn’t defective—it just needs to be recharged.” Want to learn more about why battery theory trumps spoon theory? Check out my blog [https://www.edsshare.com/post/battery-life-over-spoons-a-more-intuitive-approach-to-chronic-illness-energy] on the thought. If this episode hits home, share it with another zebra who needs a permission slip to rest. Then, take your own advice: unplug, breathe, and remember—rest is resistance to cultural and internal messaging, and it’s one of the bravest things you can do. Get full access to Zebras Underground at zebras.substack.com/subscribe [https://zebras.substack.com/subscribe?utm_medium=podcast&utm_campaign=CTA_4]

Exploring Metaphors as Medicine: Reframing Chronic Illness - Episode 1

In this debut 10 minute episode of Zebras Underground, we explore the power of metaphors as medicine—how imagery and storytelling can help us navigate the invisible weight of chronic illness. From the trauma of being dismissed or disbelieved to the emotional toll of constant hypervigilance over symptoms, we dive into how shifting our perspective can unlock new ways of coping and healing. We introduce the first in a series of metaphors with the the self-repairing castle—a reminder that our bodies, even when fragile or unpredictable, have built-in resilience and mechanisms for self-healing. Listeners are guided through a simple gratitude exercise designed to rewire the brain’s focus from fear to trust, helping to build a healthier relationship with their bodies. What You’ll Learn in This Episode: * Why metaphors can act as therapeutic tools for emotional healing. * How chronic illness often leaves us with patterns of fear and distrust in our own bodies. * The idea of your body as a self-repairing castle with natural defenses and repair systems. * A nightly gratitude practice to redirect attention from what’s wrong to what’s working. * How to begin reshaping your personal narrative with self-trust, respect, and emotional stability. Key Takeaway:True strength doesn’t come from eliminating vulnerability, but from learning to flow with it. By reframing our inner language and practicing gratitude, we can begin to see health not just as the absence of disease but as an inner strength to carry us forward. Exercise for Listeners:Spend five minutes each night for the next week writing down three things about your body that you’re grateful for—whether it’s your breath, digestion, or even your eyelashes. This small act can reprogram your neural pathways and plant seeds of trust and resilience. Join us for these short bursts of Metaphors as Medicine on Zebras Underground—where we learn a new language of healing, one metaphor at a time. Get full access to Zebras Underground at zebras.substack.com/subscribe [https://zebras.substack.com/subscribe?utm_medium=podcast&utm_campaign=CTA_4]