Chiari

I recently found out I have Chiari malformation where my brain does not have enough room. It slips down into the spinal cord causing neurological issues. I have wondered if the abuse I was subjected to by my ex husband created this monster or just made it worse. Sometimes I want him to pay for what he’s done to me and my kids but reality is, that would do nothing for me. The only thing he can do at this time is be a better person for my son. I sometimes want to be mad. I want to blame him. I want to be angry. But ultimately, I’m just not. What a miserable person he must have been to do all the things he has done to so many people. I wish him nothing but healing so he doesn’t continue to ruin people’s lives.

With the diagnosis of Chiari comes more questions and not many answers. I’ve known for years something was wrong with me. I just didn’t know what. But I knew enough to know that feeling like you’re 90 when you’re in your thirties is NOT normal. No matter how many people tell you just wait till you’re older. Especially when you look fine on the outside. I’m not fine and I’ve known it, I just didn’t know why. I’ve had plenty of people tell me I’m just lazy, like I enjoy feeling so old. ๐Ÿ™„๐Ÿ˜‚

It feels good to finally know why I can’t make it through a day without a nap. Or why some days I have absolutely no energy and have to force myself to get anything done. I hate it! I’m young! I like to make, create, do, and here I am, I’m stuck with a body that is unable to function some days. On those days I lay in bed with a heating pad on my head and face. The pressure in my head is relentless and no amount of medicine touches it. I’ve even recently tried topamax, a seizure medicine also used for migraines. It was the worst experience of my life. It made me a zombie and I couldn’t think or make any kind of decisions. It was scary and I told my doctor after three weeks I’m never taking it again. I tried the medicine even though I didn’t want to. I felt I can’t complain if I don’t try what they suggest.

Unfortunately there is no cure for Chiari. It is simply managing symptoms and if it worsens there is always surgery to give my brain more room by cutting a hole in my skull ๐Ÿ™„. At least I know the why and now it’s finding what medications will work for my issues. I’ve finally felt like myself for the past few days which I am so grateful for. It has been a very long couple of months. I joined a support group on Facebook for Chiari malformation and it has been a godsend. I read my story over and over and I cry because someone else actually understands! A complete stranger no less, but I am not alone. โค๏ธโค๏ธ

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