About Me...

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In a nut shell : I'm a full time working mom, a Star Wars geek, comic book nerd, Disney enthusiast, hockey Mom, a breast cancer survivor of almost a decade and oh let's not forget such a happy, sassy, southern mess!

Monday, March 9, 2009

Michelle's Story





My Chiari Story...







After 10yrs of unexplained symptoms, migraines and neck pain with doctor's visits of uncertainty, a simple MRI of my neck in June 2005 changed my life forever. Everyone pretty much knows their own body and when things start not to feel right or our mind doesn't think as quickly as once before, that is pretty scary. It is a constant battle of analyzing our ourselves to get to the truth. Remembering things was my forte and I found myself a clean blank slate waiting for the writing to reappear in my short term memory. I felt myself slurring more. My friends or family members would ask me what I said because they couldn't understand me. I struggle to talk slower and get frustrated because I know what I am saying and pretty much could understand myself but others could not.

Finally with the right doctor, I was told in June of 2005 that I have a rare disorder called Arnold Chiari Malformation. Arnold Chiari Malformation is a rare brain disorder that causes crowding by the cerebellum at the brain stem/spinal cord. Basically everything I have been going through in the past years actually is ALL IN MY HEAD. How is that for real truth.? My brain (the cerebral tonsils) is basically too big for my skull and is falling downward and hitting my spine. It causes me to have daily migraines, dizziness, tremors in my body, brain fogs, severe neck pain, slurred speech, etc. I also lost my medical coverage that same month. What a devastating blow to finally find out what was ailing me all those years and then see it slip through my fingers due to the costly expense.

So after thinking, am going crazy or what is going on with my life? This diagnosis made me review my everyday life and realized it all made sense. It helped answer lost questions like, Why is taking a shower and washing my hair such a chore. Another good one is, when I start bending my head backwards to wash out the shampoo, my neck really hurts. And please let's not forget my best friend who likes to make me laugh so hard my head is about to explode from the pressure like a brain freeze, but non the less, it feels good to laugh. These are realistic, everyday battles of someone with Chiari Malformation. This is real for us. Just like other diseases, disorders or cancers, each day is unknown. This rare disorder presents not only physical difficulties but it also causes much mental anguish.

You go through the emotional roller coaster of what is wrong? It is difficult because to others I may look okay but don't feel okay. So that is another personal battle when friends or family members can't comprehend why one day I feel great and the next I am in bed. For me, my roller coaster ride has given me strength from finding other Chiarian's like myself. We may all have different symptoms or ranges of this disorder but we all finally have a name to this battle that is fought each day from the time we wake up until we lay our heads down at night. Each of us wondering and seeking or praying for strength of our own tomorrow.

The biggest advice I can have is , Never Give Up and Always Speak UP! Get different opinions until you find the answers. You are the only one that knows your body and how it works. You just need to find the right doctor that will listen. Without insurance it has been hard to know what path to turn. Research and support with prayer and faith , has helped me to keep my strength up.

For more information on Arnold Chiari Malformation, please contact me at achiaribabe@yahoo.com. The World Arnold Chiari Malformation Association is a wonderful place to start. http://www.pressenter.com/~wacma/ It is the first place I went to after my diagnosis. It has a great support group on yahoo that is vital to having the best support.

FAITH, HOPE, LOVE and AWARENESS : NOW THAT IS POWER

By Michelle Rock "achiaribabe"

7 comments:

  1. Michelle,
    it is so true what you say..some may look ok on the outside but have sickness all through their body. I can't imagine what you go through each day and I am sure having no insurance just adds to your daily problems.. I hope you can find the comfort you are seeking..and I am glad you have found others that you can talk to.. this internet thing is wonderful..so much help and support out there.. God bless..
    Kelly~

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  2. Good entry. It make me want to continue to fight for the life I want, reading the entries in this journal.

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  3. Always speak up, well, I've never had a problem with that one ;-0.
    I know of your condition because I ran a Neuro practices for over 4 years. It is often so difficult before you REALLY KNOW what it is. Almost everyone(with many different disorders having varying symptoms)starts to think they are crazy or that others will think they are crazy because it all just does not fit properly. Having a solid diagnosis doesn't make anything happening to you go away, but it certainly validates things you should have never needed the outside validation for.
    ~Mary

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  4. very powerful blog, thanks so much for sharing it is so enlightening and powerful. I am inspired by this so thank you

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  5. Bless you! Don't ever give up....

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  6. My son and husband both suffer from Chiari. Both treat at the Chiari Institute. I'm co-founder of a support group called ChiariPeople of PA. i write about my son & husband in my blog all the time. Nice to meet you!

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