Ehlers Danlos Syndrome
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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
advice, anthropology, autoethnography, Brain and Spine, communication, community, content warning, Ehlers Danlos Syndrome, family, Free, health, healthcare, help, journal, life, me too, Mental Health, no paywalls, outreach, personal truth, perspective, psychology, resources, self help, self improvement, sociology, struggle, survivor, therapy, trigger warning, Wealthcare, Zebra -
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 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
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 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
advice, chronic pain, communication, community, content warning, EDS, ehlers danlos, Ehlers Danlos Syndrome, family, Free, gaslighting, group therapy, health, help, journal, life, lifestyle, me too, medical gaslighting, Medicine, Mental Health, no paywalls, outreach, personal truth, perspective, resources, self help, self improvement, struggle, support, survivor, therapy, trigger warning, waste of time, Zebra -
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
advice, chronic pain, communication, community, content warning, EDS, Ehlers Danlos Syndrome, family, fitness, Free, health, help, journal, life, lifestyle, me too, Medicine, Mental Health, no paywalls, outreach, personal truth, perspective, PT Physical Therapy, resources, self help, self improvement, struggle, survivor, therapy, trigger warning, Zebra -
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
advice, anaheims, capsaisin, communication, community, content warning, diet, EDS, Ehlers Danlos Syndrome, family, food, food sensitivities, Free, health, help, journal, life, lifestyle, mcas, me too, no paywalls, no safe foods, outreach, peppers, personal truth, perspective, resources, safe foods, self help, self improvement, struggle, survivor, therapy, trigger warning, yummy, Zebra
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