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, September 16, 2010

Conquer Chiari Walk Across America

This month is Chiari Malformation awareness month. It is also the Conquer Chiari Walk Across America. People from all over the country in 30 different locations will be walking to raise money for research this Saturday September 18th . This is a monumental event. Last year $250,000 was raised and 90% went towards exciting new research! That is awesome! Research is funded only by private donations. I have walked the last 2 years in Albany NY. I will be walking in CT this year. I have raised $1000 towards this years walk. It is a great opportunity to meet other people with Chiari. Chiari is a debilitating, life changing condition. People who survive Chiari everyday are reminded of what a "true survivor" really means. A true survivor is someone who doesnt let Chiari become who they are. We hope that through research people will be helped in the future. That .. Chiari will be recognized as a "chronic" condition ...that can be disabling. I believe that Chiari has seasons of wellness and illness. When we are pushing through a season of illness.. we find support through our friends that share the same daily challenges of Chiari. Please help support us and find alternative treatments for Chiari. Our lives depend on it. You can click on the title above for the link to make a donation. Thank you.

Chiari Interview