EDS
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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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Zebra Files 13) Why Blog About It?
The author blogs about their medical journey for three main reasons: to process and analyze experiences, to create a searchable record of symptoms and illness progression, and to emphasize the importance of representation and visibility for shared experiences. Blogging fosters community and encourages open conversations about health struggles. Continue reading
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Zebra Files 10) I’m Not At My Best, But I’m Trying My Best
The writer expresses feelings of inadequacy despite trying their best amidst constant pressure. They detail struggles with work competency and personal needs, emphasizing the importance of therapy and self-care. Acknowledging limitations and the necessity for help, they grapple with managing pain and family responsibilities while seeking acceptance and improvement. Continue reading
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Zebra Files 9) Being Realistic
The author shares their struggle to maintain a healthy diet while juggling multiple responsibilities. They emphasize the importance of cooking from scratch and listening to their body’s needs without being restrictive. Meal prep can be challenging, and they acknowledge the need for grace during the healing journey ahead, which requires understanding their health issues. Continue reading
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Zebra Files 8) Life Keeps Lifing
The author reflects on their struggle with health issues amid family challenges, including upcoming MRIs to investigate a potential Cerebral Spinal Fluid Leak and Multiple Sclerosis. They confront overwhelming responsibilities, balancing personal needs, and the demands of caring for family members undergoing surgeries, all while managing their condition’s impact on daily life. Continue reading
Ehlers Danlos Syndrome, Health and Healing, Protyus Quest for Care, Rare Diagnoses, Social Issues, Uncategorized, Wealthcareadvice, appointments, communication, community, content warning, CSF Leak, EDS, Ehlers Danlos Syndrome, exhaustion, family, Free, health, help, journal, juggling, life, lifestyle, me too, mom, mri, ms, multiple sclerosis, no paywalls, no spoons, outreach, parenthood, personal truth, perspective, resources, self help, self improvement, spoon theory, spoons, struggle, surgery, survivor, tests, therapy, trigger warning, Zebra -
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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Zebra Files 5) YES Foods
YES Foods are foods that stabilize and heal the body. Finding these involves research and experimentation. The author favors the Atkins Induction diet for better health, avoiding processed foods, sugars, and certain vegetables. They plan gradual dietary changes, focusing on cooking methods like Sunrise, Salads, Soups, and Stirfries for variety and nutrients. Continue reading
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Zebra Files 33) What Happened To Nappin?
The author reflects on their struggles to implement a health plan that has ultimately failed due to unpredictable pain and fatigue. Despite making adjustments like relocating their work station, they continue to face setbacks, including physical therapy difficulties. They remain hopeful, planning to share insights and routines to improve their quality of life. Continue reading
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Zebra Files 4) The First Bite Is The Deepest
The author reflects on starting a lifestyle change by limiting coffee intake and choosing healthier options. They plan to develop a comprehensive nutrition and exercise regimen over the weekend, tracking progress without focusing solely on weight. Exploring personal improvements, they aim for gradual success and will document their journey moving forward. Continue reading
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Zebra Files 3) Being Treated Like a Hypochondriac
The author recounts their struggles with medical professionals who dismiss their serious symptoms as hypochondria, attributing them instead to common issues like weight. They detail multiple distressing symptoms, their search for a correct diagnosis, and a newfound awareness of potential connections to connective tissue disorders, all amid frustration and medical gaslighting. Continue reading
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Zebra Files 2) One Bite at a Time…
The blog discusses the author’s journey of managing hypermobility syndrome through diet and lifestyle changes, likening the process to “eating an elephant” one bite at a time. It reflects on past dietary experiences, the challenges of living with restrictions, and the support from family and work, emphasizing self-discovery and gradual improvement. Continue reading
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