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Brynley is a 16 month old with Chiari Malformation, she has 3 other siblings and her mom is their sole provider. Her mother is having to travel out of state to get the care that Brynley requires.
Can we spread the word and help this baby girl, please? Thanks from a fellow Chiari Warrior.
I am currently living in a world that does not seem like mine. Sure, I have had times where I was uncertain and fearful…but this is by far the worst. This is a world where everything has been turned upside down and shit spills out. What has happened to make my world topsy turvy shit?
I was recently diagnosed with Chiari (kee-AH-ree) Malformation. It’s a congenital condition where part of your brain spills out of the back of your skull and presses down onto the spinal column. The crap it creates is many and varied.
My personal symptoms (that I have endured my whole life, but tried to brush off) are:
These symptoms come and go, I never know when I’ll get one or a few at one time. And because of my constant vertigo companion, I can’t work…they say I am a danger to myself or others. I guess I can see where they are coming from, being that I work around robots 10 hours a day. Well…I did.
I have no clue which way is up anymore. I can no longer (for now) help provide for my little family. I worry how we’ll pay our rent now. I can’t even think about my student loans at this time. I can only take it one day at a time.
It doesn’t help when I have doubters around me. My immediate family has been very supportive, since they have personally seen me suffer. My extended family (mainly in-laws) give me the impression I am just putting on “airs” and making it up. I have a few friends who have rallied by my side, I am thankful for them.
I inadvertently hurt my husband last night. His youngest brother is having his thyroid and some lymph nodes removed next month (he was diagnosed with cancer). (Imagine the stress my poor husband is having, his wife and brother sick at the same time.) I told him I didn’t think I would go with him when he goes to Arkansas, because I got the feeling from his family that I was just pulling a fast one. I know he needs me there with him, I just feel very uncomfortable being around people who think I am putting on an act. I hate feeling like this. I hate feeling worthless and inadequate. Most of all…I hate being doubted, especially when I have medical proof I am not. I even have a fucking email from my nurse practitioner telling me what I have.
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