ehlers danlos
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POST 1 — Zebra Files Book + Website Are LIVE
The Zebra Files project is officially LIVE. The book.The website.The whole ecosystem. This is the place where chronic illness, neurodivergence, trauma, and survival finally get the language they deserve — without shame, without gaslighting, without the medical maze. And yes… the Zebra Smoothie System lives there too. zebrafiles.wordpress.comCome see what we’re building. ZebraFiles #SurvivorLiteracy #ChronicIllness… Continue reading
Conformity and Control, food addiction, Identity, Panthenogenesis of Power, Personal Growth & Self‑Navigation, Rare Diagnoses, Relational Anthropology, Self‑Repair, Social Issues, Survivor Literacy, Wealthcareadhd, anthropology, Autism, bear, carry, chronic illness, conformity, control, cptsd, EDS, ehlers danlos, episkevology, hostage, instagram, iykyk, linguistics, mcas, money, patriotism, Pluriology, politics, power, psychology, relational anthropology, Relational Field Theory, RFT, social science, socials, sociology, survivor literacy, survivors, theory, trafficking, Zebra, zebra files -
19) Presidential Fitness Test
The Presidential Fitness Test, established in the 1950s to assess youth fitness in comparison to European peers, emphasized military-style performance. Over the years, it became associated with body shaming and emotional trauma for many, particularly those facing physical limitations. The test was abolished in 2013 after widespread criticism. Continue reading
Conformity and Control, cult of the ego, cycle breaking, Erasing The Silence, grooming, Health and Healing, Poetry, Social Issues, theory, Uncategorized, Wealthcareabuse, advice, anthroplogy, anthropology, autoethnography, children, communication, community, comparison, content warning, cptsd, cycle, cycle breaker, cycle breaking, cycles of abuse, EDS, ehlers danlos, Ehlers Danlos Syndrome, eisenhower, family, fat, fitness, Free, government, gym, health, help, institutionalized trauma, journal, life, lifestyle, me too, Mental Health, mile run, no more, no paywalls, not on my watch, outreach, pain, personal truth, perspective, Presidential Function Test, psychology, ptsd, public shaming, pull ups, push ups, resources, rope climb, school, self help, self improvement, shame, sit ups, social science, sociology, structural violence, struggle, survivor, therapy, torture, trauma, trauma informed, trauma recovery, trigger warning, Zebra -
Daily Prompt – Walk or Run – 9.13.25
The author discusses the challenges of walking and running due to Ehlers Danlos Syndrome and L4 facet joint arthropathy, which cause joint pain and electrical shocks. Despite these difficulties and a spinal cord stimulator that often fails, they are gradually increasing their walking and stair climbing, focusing on recovery. Continue reading
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Zebra Files 48) Recharge My Spinal Cord Stimulator With Me!
The author shares their experience recharging their spinal cord stimulator, showcasing videos of the process. They encourage followers to connect on various social media platforms and are open to questions about their journey. The stimulator’s battery is implanted under the skin in the lower back and requires charging through the skin. Continue reading
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Zebra files 46) Treatment Follow Up
The author provides an update on their experience with hyaluronic acid knee injections. After the third round, they report significant pain relief and improved mobility, particularly in relation to their hips. While pain persists, the injections have eased daily activities and reduced overall discomfort. They express gratitude for support during the treatment process. Continue reading
advice, communication, community, content warning, EDS, ehlers danlos, Ehlers Danlos Syndrome, family, Free, health, help, journal, life, lifestyle, me too, Medicine, no paywalls, outreach, personal truth, perspective, resources, self help, self improvement, struggle, survivor, therapy, trigger warning, Zebra -
Zebra Files 44) Treatment Review-Hyaluronic Acid
The author discusses their experience with Hyaluronic Acid injections for knee pain relief due to the ineligibility for steroid and stem cell treatments. Despite the painful procedure, initial results show significant improvement in pain levels and knee functionality. The injections, required every 3-6 months, are covered by Medicaid, offering a hopeful solution. Continue reading
advice, chronic pain, communication, community, content warning, EDS, ehlers danlos, Ehlers Danlos Syndrome, family, Free, health, help, hyaluronic acid, injections, journal, knee, knee pain, life, me too, Medicine, no paywalls, outreach, pain, pain clinic, personal truth, perspective, resources, self help, self improvement, struggle, survivor, therapy, treatment, trigger warning, Zebra -
Zebra Files 38) Welcome Back
The author reflects on their holiday season, expressing hope and compassion despite challenges. They share their return from a break, discussing their health goals and experiences with physical therapy. A daily exercise regimen was developed, aiming to enhance mobility and strength, while navigating the unpredictability of living with Ehler’s Danlos syndrome. Continue reading
advice, communication, community, content warning, ehlers danlos, exercise, family, fitness, Free, health, healthcare, help, journal, life, me too, new years, no paywalls, outreach, personal truth, perspective, resources, self help, self improvement, strength-training, struggle, survivor, therapy, trigger warning, workout, Zebra -
Zebra Files 35) Pain Group
The author attended a Pain Support Group for the first time, prompted by feelings of mild suicidality, depression, and anxiety. While reflecting on their struggles, they shared emotions and experiences with others, finding some usefulness in the conversation. Although physically exhausting, they’re open to the potential benefits of the group. Continue reading
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Zebra Files 34) Hypermobility Workout
The post introduces a daily routine for managing hypermobility, particularly focusing on lower-body workouts available in two parts on YouTube. While not medical advice, the author hopes to raise awareness about the effort required for hypermobile individuals to function and encourages others to consider their own bodily needs. Continue reading
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Zebra Files 31) Physical Therapy
The author shares their experiences with physical therapy, highlighting the challenges and discomfort encountered while addressing hip, back, and shoulder issues. Despite initial soreness and excitement about progress, they face setbacks including increased shoulder pain and joint issues. The journey emphasizes the complexity of rehabilitation and the importance of careful exercise management. Continue reading
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Zebra Files 26) Backwards is also Backwards
The author expresses the struggle of managing their health system challenges related to hypermobility, including denied medical referrals and insurance issues. Despite making progress, they are dealing with discouragement, caffeine withdrawal, and the pressure of adult responsibilities. They embrace their current difficulties while maintaining hope for future improvements. Continue reading
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Heartbreak and Hoofbeats
Heartbreak and Hoofbeats by Protyus A. Gendher Heartbreak and HoofbeatsProfessionals are trained to unsee me Even when they’re looking for things unseen They can’t or won’t or don’t look deep Even when I spread it all out before their eyes Tying pieces together like an episode of CSI Flimsy red string connecting the bits of the puzzle But they listen like… Continue reading
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Zebra Files 17) Trying To Hit A Moving Target
The writer compares managing health challenges to eating a whole elephant, emphasizing ongoing struggles with pain, medical tests, and difficult lifestyle choices. They face guilt over limitations and are exploring dietary changes to alleviate symptoms. Despite setbacks, they remain committed to seeking treatment and improving their well-being while acknowledging the complexities involved. Continue reading
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Zebra Files 15) Meaningless Answers
The author shares their ongoing struggle with persistent symptoms despite normal MRI results, ruling out MS and a CSF leak. They face severe pain, mobility issues, and insurance challenges for necessary physical therapy. A reduction in work hours raises financial concerns, while waiting for further medical evaluations adds to their anxiety. Continue reading
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Zebra Files 7) Did Not See This Coming
The visit to Dr. Handjob revealed mixed news regarding health concerns. While he initially ruled out a CSF leak, he suggested other possible diagnoses: Ehlers Danlos Syndrome, Cerebral Spinal Fluid Leak, and Multiple Sclerosis. Diagnostic tests will clarify the situation, leaving uncertainty about the outcomes but maintaining a sense of humor. Continue reading
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