Last weekend we had a divorce party/pub crawl for my sister. So we were in the car on our way to Fells Point. We had to stop for gas. After I was done pumping/paying etc..I went to pull away and I stuck my hand through the steering wheel to reset the trip counter...the other hand was turning the wheel. Bad idea. I got the one arm stuck in the wheel and had to stop in the middle of Rutter's parking lot. I'm screaming "I'M STUCK I'M STUCK!!" I couldn't get my arm out. It didn't click that I needed to turn the wheel back the other way to get my arm out. Haha apparently my left and right sides were not communicating. Otherwise I wouldn't have turned the wheel while the other was still in it...
Chiari & alcohol...they don't mix well. It's like an instant hangover. It sometimes sucks being 23 years old and can't drink a few drinks without getting headpain right away. If I do drink, I drink slow. I get told to drink up, chug it...etc Yeah..uh NOT happening. I finally know that I'm not the only chiarian who experiences this. I'd like to try and research this more. So there may be more on this subject.
I've asked a Chiari friend from Chiarisupport if I could share her post about her dose of reality. This reminded me of myself as I'm sure it has many others.
So um...When I read this it made me think about how I felt when I found out I had Chiari Malformation and Syringomyelia. At first, all I wanted was the daily headpain and vomiting to stop. I didn't take in the fact that it was major surgery. It was in fact brain surgery. I was worried about getting my hair shaved. What more would a 15 year old girl be worrying about? I figured as she had said, it would be all over and done with afterwards; that surgery would be an instant fix. They'd get in their cut the bone out, there would be more room for my ginormous brain and voila, I'm cured. But yeah reality will hit you. After the surgery I was in so much pain. Much more than I was before it. It took awhile to finally get back to almost normal. As normal as I'll ever be.
Well how should I put this??
I HAD BRAIN SURGERY!!!!!!
It just hit me after a phone conversation with a fellow Chiarian and Zipperhead. Not only that, but I also have a, no two, conditions that will change my life forever. I just thought I would go in and have part of my skull, spine and BRAIN removed and go back to having a life better than I could ever imagine. It NEVER hit me that I had MAJOR surgery. Surgery that was NOT a cure for this, but just a way to maintain further deteration. Why is it so hard for me t accept that I will not be able to go right back into the swing of things and start running Marathons or being Wonder Woman? I just made this seem so simple... "they go in, remove some skull, some neck and some brain and back to same old, same old in a couple of months." HELLO!!! Things will NEVER be "same old, same old" again. Did anyone else who has been diagnosed or has had surgery feel that this is the way it was, is or will be too? Did anyone else have to get a reality check? Is anyone elese still in denial? Just wondering if I am the only one to have such a hard time accepting that I will NEVER be the same or even 100% ever. -Crystal
I look fine on the outside but Chiari is always hurting me somewhere. Hardly one day goes by without feeling it. I've learned to deal with it. It sucks most of the time as people see you and think you're fine. They don't know something is wrong with you because you look fine. This is what is called an invisible illness. "But you don't look sick...so you're fine." Just because you can't physically see it, does not mean that I'm not feeling it.
Thanks for reading!
Oh and before I forget...I need to mention a friend of mine...Dixie.
Check out his blog!