Ehlers Danlos Syndrome
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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 -
Zebra Files 47) Brain and Spine
The author shared their experience at the UC Health Brain and Spine Clinic, where they met Gene Cook, PA. Despite being informed that surgery isn’t an option due to their BMI, the appointment offered valuable insights into their condition, including Spondylolisthesis. They plan to follow up on neuropathic pain and explore further options like a… 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
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Zebra Files 45) Treatment Review- Lumbar Nerve Ablation
The author shares their painful experience with lumbar nerve ablation, detailing the diagnostic rounds and procedures. After two painful rounds of injections with minimal relief, the author concluded the diagnostic tests were unsuccessful. They are now considering a spinal cord stimulator, but express fear and skepticism about further pain management options. Continue reading
acupuncture, advice, back-pain, communication, community, content warning, EDS, Ehlers Danlos Syndrome, family, Free, health, help, journal, life, lifestyle, me too, Medicine, nerve ablation, no paywalls, outreach, pain, pain treatment, personal truth, perspective, resources, sciatica, 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
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Zebra Files 37) Accessing Care
The author shares their journey of navigating healthcare access challenges while managing health issues. They reduced work hours to alleviate symptoms but lost private insurance, complicating care access. Despite obtaining an MRI revealing spinal stenosis, delays in referrals and appointments threaten their ability to return to work by January. The struggle continues. Continue reading
advice, communication, community, content warning, Ehlers Danlos Syndrome, family, Free, health, healthcare, help, insurance, journal, life, lifestyle, me too, no paywalls, outreach, personal truth, perspective, resources, self help, self improvement, struggle, survivor, therapy, trigger warning, Zebra -
Zebra Files 36) It’s All Connected
The author expresses frustration with the interconnectedness of insurance systems after losing coverage, preventing access to necessary medications and treatments. Facing bureaucratic obstacles, they question the impact of their work hours on pain levels and quality of life while navigating the intimidating process of submitting disability paperwork. Resilience is tested amid these challenges. Continue reading
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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 32) Getting My Butt Kicked By Everything
The author reflects on their challenges managing physical pain and limitations, particularly during physical therapy. Despite planning and efforts, they struggle with pain that affects their work and daily activities. Yet, they experience moments of improvement and hope. Upcoming dental surgery and participation in a pain support group offer potential paths forward. Continue reading
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Zebra Files 24) Settling In
On day two of a lifestyle change, the writer confronts strong cravings and the challenge of balancing allowable, appealing, and easy-to-prepare foods. While struggling with discomfort, they acknowledge that improvement feels minimal, focusing instead on reducing misery. Acceptance of this ongoing journey becomes crucial for long-term success. Continue reading
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Zebra Files 20) A Disastrous Goodbye
The author reflects on saying farewell to foods that cause discomfort, particularly stuffed Anaheims. Despite their deliciousness, the preparation proves painfully labor-intensive and leads to negative physical reactions. This experience reinforces the author’s commitment to managing their diet, acknowledging that while tempting, many foods are ultimately unsuitable for their body. Continue reading
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Zebra Files 19) The Symptoms
The author shares a comprehensive list of their various health symptoms and diagnoses, including ADHD, autism, arthritis, and chronic pain. They aim to track their health changes as they interact with specialists and emphasize that the list serves as a reference. Many symptoms are severe and include issues like fatigue and digestive sensitivities. 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 14) Schrodinger’s Brain
The author explores the complex nature of illness and self-doubt through the metaphor of Schrodinger’s brain, likening their symptoms to being simultaneously real and unreal. This internal struggle involves battling a critical inner voice, “Joyce,” and the challenge of seeking validation amidst fluctuating health. The journey highlights the quest for real answers and relief. Continue reading
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