About Me

My photo
Im 41..married to Bob..we have 4 kids..Chris 25, Nick 20, Mitch 18 & Tori 15

Me Brain

Me Brain

Story continued..

..July 3rd,07 was the day it all began.. unbearable neck pain..so after many dr appointments..I finally was able to see the drs with the answers at The Chiari Institute in Long Island NY..I was dx with Arnold Chiari Malformation,Syringomyelia, Ehlers-Danlos Syndrome, and Tethered Cord Syndrome..I also found I have herniated discs,buldging discs, Degenerative joint disease in my entire neck,cervical lordosis, spinal stenosis, valvular regurgitation in the tricuspid and mitral valves..this all hit me like an impossible nightmare..but it was a life that I had to make a decision to embrace..I want other chiarians to know that although there are not many of us out there..we all need each other to cheer us on.. some of us have great family and friends to support us..but there are still many of us who dont.. I have a supportive husband.. who see's how the headaches stop me in my tracks..or the neck pain that puts me on the couch with the heating pad..numbness..earaches and many other obsticles I have to overcome each day..many of my family and friends dont understand how it is in my shoes..Im here to share MY Story , highs and lows, information I dig up and offer support to people who need it...

Thursday, December 31, 2009


I cant believe 2010 is here! In the last few days I have been thinking about where "I thought" I would be in 2010. Definitely not where Iam. If someone 10 years ago..or even 3 years ago..would have told me that I would be on Social Security Disability.. have 4 surgeries in the last 2 years...be diagnosed with 4 rare disorders and have my world turned upside down... I would never have believed them! But as I have learned in the last 2 and a half years ... you adapt. And if you dont.. you live in denial. Honestly..that is easier said than done.

I have a little block of wood in my living room that simply says "Be Thankful" on it. I bought it to be a daily reminder of what really matters. Knowing that everyday..every moment..every experience we have here on earth is a gift from God. It is a blessing we are given. We may not always think it is a blessing..but sometimes what we dont like... is Gods way of shaping us into better people. It builds character. These experiences help to give us tools to live life fuller and more fulfilling.

Iam sarting to put together a list of New Year's resolutions. Thinking of what some of them have been in the past and what I hope the future will bring. How I may or may not have control of this year's events. How I may handle "change" in the New Year. What priorities have changed... reprioritizing. Soul searching for what I want out of life in 2010.

New Years resolutions are defined as... a commitment that an individual makes to a project or the reforming of a habit, often a lifestyle change that is generally interpreted as advantageous.
That being said..what projects do I want to tackle, what bad habits do I need to break, and what unconventional lifestyle changes do I dare make?

I would like to wish everyone a Happy..Healthy..Safe..Prosperous..Successful.. Adventurous..
New Year!

I will keep you posted on my New Years resolutions.....

Chiari Interview