WorthTheFight
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My Husband, My Caretaker, My Hero
Like any marriage, we’ve had our rocky moments. We’ve both showed our ugly sides more than we like to admit. I’m not sure when he changed, but somehow along the way in our 27 years of marriage, my husband morphed into this amazing man who is EXACTLY what I need in every way! My husband…
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This Disease Called A Blessing
They keep telling me I’m a blessing. That I’m lucky to be alive. That although I’m sick I’m blessed to be here every day. I’m blessed to spend time with my kids. And although people tell me this everyday like it is some sort of affirmation, I don’t feel blessed. I don’t feel blessed when…
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Breaking The Cycle
I’m in an abusive relationship. It’s not a romantic one at least, not in the traditional sense of the word. When I fell in love with her, she reminded me of a goddess. She was beautiful and kind. She never took no for an answer. She was unstoppable. She was an inspiration. To me and…
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Palliative Care: An Essential for EDS & Chiari Families
When I was first diagnosed with Chiari Malformation, I believed everything that my neurosurgeon told me. I was originally diagnosed with a Chiari 1 Malformation. I was told that it was congenital and due to my mother either using drugs or not getting proper prenatal care, which was crushing to hear, but not all that…
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How Much Are You Worth?
When a person suffers from a chronic condition, we sometimes equate our value to how we feel. Chiari, Ehlers-Danlos, CSF Leaks, Chronic Fatigue Syndrome, etc. all cause pain. Sometimes we tend to carry that pain along with us as baggage. If we carry our self-value as related to pain, we are more likely to let…
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DEAR FAMILY (***Revised: Clean Version***)
FOR ALL MY NON-CHIARI FAMILY MEMBERS AND FRIENDS… I really NEED you to listen to this and just try to understand! I know there’s absolutely NOTHING I can say to help you understand the pain that I go through; what it feels like to have pain all the time, in places that I didn’t even…
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DEAR FAMILY (***Strong Language***)
FOR ALL MY NON-CHIARI FAMILY MEMBERS AND FRIENDS… I’m going to cuss, but I really NEED you to listen to this and just try to understand: I know there’s absolutely NOTHING I can say to help you understand the pain that I go through; what it feels like to have pain all the time, in…
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The Denelle Crespo Story – A Chiari Warrior’s Journey
I was what you would consider a “typical developing child” growing up, I did not have any health issues and was able to enjoy much of my childhood. My journey to finding answers in regard my health began at 15 years old, when I began rapidly losing my vision in my left eye. I dealt…
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The Eric Michael Nault Story – A Chiari Angel’s Fight
During my pregnancy I remember being very unwell, writing in my journal, “there is something wrong with pregnancy, I know something is wrong with my baby”, at only 10 weeks gestation; proving that a mother always knows. At around 30 weeks gestation my unborn baby started to get chronic hiccups followed by trembling, lasting several…
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The Majbrit Jessen Story – A Chiari Warrior’s Journey
I had a rough journey with these conditions and I am sharing it to help show how complex we can be and how much we need the medical community to step it up a notch (or ten)! I grew up in Denmark, where I lived when I was diagnosed and had my first surgeries. I…