Monday, June 20, 2011

A Dose of Reality

Chiari moment of the week:
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...
Well how should I put this??
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
 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.  
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 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!


  1. Oh thank you Alicia
    , yeah until I talked to you I thought the surgery was a fix it all. I really wish it was. I know I never would have thought about you suffering from the times we spent talking and laughing in person. I thought you were "cured", hoping one day there will be a final fix for it.

  2. Dear Crystal & Alicia,
    I got a neck/back injury from work as an RN.I was refused "urgent" surgery because of comp. So my spinal cord was left FLAT for over a year. I had spasms 24/7. My muscles on my tricepts & thighs were like ropey hard bands.A neurologist thought I had a muscle disorder. I was like just decompress my spinal cord & let me go back to work. just like you, surgery I would be back to the healthy me. OH wow far from the truth. How we suffer , normal people will never know.We do look fine but the pain & symptoms everyday are unbelievable.
    Within a year and after ,many spinal injections I had neck surgery a @" plate. Thought I was going to be all better, haha. NOTHING changed to little too late. I was diagnosed with Fibromyalgia and then hypothyroidism, myofacial pain syndrome.The worst for me was my RN license. I raised 3 boys went to college when I was 36 and graduated. I finally got my dream job and I couldn't even get out of bed. So I have been sick for 1 yrs. now. But i was in DENIAL for the first 8 or 9yrs. I just had to have 3" rods put in the back of my neck because the plate let go. Then I had to have both shoulders repaired because the disc was compressed so long C4 that fed the shoulders. Anyway I still was determined to find a cure or get better.Maybe last year I realized I am never going to get any better than this. This is the "NEW NORMAL". So grieving my nursing job was the absolute worst to deal with. I have good days and say I'm going to get a part time job. Then I am in bed for the next two.Reality is we have to PACE & live life to the fullest that we can.Get rid of toxic people or people that shrug off your disorders. That just keeps stress level high and you isolate.The rods got rid of a lot of spasming in & around my neck. But if I do to much with the grand children with my arms & shoulders I will pay a big price. Because now it is scar tissue trying to spasm.
    I had researched Chiari malformation when I was first injured because that can cause fibromyalgia symptoms. But my MRI was negative.So maybe you may have fibromyalgia? Another horrible invisible disorder.When we are older we then have arthritis & menopause on top much to deal with.It gets better but you do have to pace yourself.Diet & walk , move some how. or you will get worse.Thanks for sharing. Sorry we have to live like this but you are NOT ALONE ~BLESSINGS~

  3. Thank you for sharing this post. i am 23 and am headed from OK to CO to see a NS in two weeks, sometimes i just cant wait cause im hoping for a quick fix. I have a 13mm herniation and 7mm syringomyelia and its hard to explain to people that when i say my head hurts its not "just a head ache" its pain and loosing my hearing and sight and feeling in my fingers.

  4. @anjel77- Wow that is a lot to go through! My aunt has fibro. I have never been checked for it though, I don't think I have it. As soon as I get my butt in gear I'll have my MRI's up on here over the years showing the differences in my CM & SM. I just haven't made time to get them off the cd and upload them.

    @Allison - I'm 23 as well. How did your NS go? I wish there was a quick fix! :\ I feel your pain. It is so hard to explain the pain your in when on the outside you look fine, or as you said its not "just a headache" and its hard to explain. I've recently been calling it headpain. I've been trying to figure out ways to differentiate the two to other people.
    Is this your first visit to the NS?