WorthTheFight
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Holiday Hug
The week before Christmas in my home is filled with gift wrapping, cookie baking, dogs barking, people talking (loudly)… On a normal day, we feel the pain in the stiff neck, the backache, the headache, (the list could go on). When we are surrounded by stressors, they can take a toll on a person, especially…
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The Prayer of An EDS/Chiari/Comorbid Patient
As we lift up a warrior fighting EDS, Chiari, and/or Comorbids,We are believing You for: Knowledgeable doctors/surgeonsWith hearts for the patients that are trusting themEars to hear themAnd a willingness to unlearn and relearn CSF leaks to sealCranial masses to disappearNarrowed venous structures to widenAnd cranial pressures restored to normal Sticky…
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The Emmalyn Freeze Story – A Chiari Warrior’s Journey (Updated)
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in A Chiari Warrior’s Journey, Acquired Chiari Malformation, Atlantoaxial Instability, Craniocervical Instability, Dysautonomia, Ehlers-Danlos Syndromes, Heritable Disorders of Connective Tissue, Intracranial Hypertension, Intracranial Hypotension, Mast Cell Activation Syndrome, Syringomyelia, Testimonials, Tethered Cord SyndromeColton had just finished his Chiari Decompression. He was headache free and doing great! His neurosurgeon came to me and said, “This is a genetic disorder and Emmalyn should be checked.” Two weeks later I took Emmalyn into the Chicago area to be sedated for her first MRI of the brain and spine. Three hours…
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The Mukti Ryan Story – A Chiari Warrior’s Journey
“But you look so good” is what people usually say when they find out that I struggle with debilitating chronic illnesses. It is true- I wear fashionable clothes, I do my hair, I put on makeup and I have a smile on my face. Underneath it all though, is someone who is trying to live…
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The Petra Johansson Story – A Chiari Warrior’s Journey [English Version]
“We need to perform surgery on your brain, and we need to do it now!” What would you do if someone said that to you? Your brain – that thing on the top of your head that is all that is you. Someone needs to cut into it and fix what is wrong and there…
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More Than a Headache – A Warrior’s Poem
It started with a headache, But it didn’t go away. Soon I would find out That it was here to stay. They all say, ‘the sun’s out, go out and get some air!’ But my wobbly legs ache, not to mention every strand of my hair. Every Doctor says, ‘You look just fine! It must…
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The Sarah Taylor Story – A Chiari Warrior’s Journey
When I first started getting hit with symptoms, I was a divorced, single mother of three amazing kids; responsible not only to provide for them but to see them through life, unscathed by life’s situations, and showing them that there was nothing that if they worked hard at something, nothing could hold them back. I…
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A Mother’s Story
Today is 11th April, 2019. Spring is in the air, yet I struggle to appreciate its presence. My daughters are at school, my son is at home in bed yet again. Like so many other days he is unable to get up. My son is 19 years old and looks just like any other 19…
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Walnut-Crusted Chicken Salad with Blueberry Balsamic Vinaigrette – “Anti-Inflammatory”
INGREDIENTS: Blueberry Balsamic Vinaigrette: ½ cup fresh blueberries ¼ cup aged balsamic vinegar 2 teaspoons honey ¼ cup avocado oil or light olive oil ¼ tsp sea salt ¼ tsp ground black pepper ¼ teaspoon onion powder ½ tablespoon whole grain Dijon mustard Walnut-Crusted Chicken:
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When A Chiari Woman Passes Away
When a Chiari woman passes away it changes so much for so many. It leaves a hole in the hearts of the Chiari community because, even as dysfunctional as we are sometimes, we know we’re all in this together! We know what it’s like to have conditions that so few understand, including our doctors. We…