About Me

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

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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...

Wednesday, October 13, 2010

So where do I sign up?? I would be on the next plane... Who's game? I know there are so many of us that deal with so much "crap" when it comes to Chiari (and related conditions). It's like it never ends.. doctors, medications, alternative treatments, insurance companies, social security disability, workers comp, office personal, friends, family.... its always a battle. Fighting for the proper care, to be heard, understood and not pitied. No matter which way you turn... its not easy. It almost seems we are a special breed who have to be strong.. or do we? Is it strength, bravery, courage, guts, faith, hope, patience or grace.. that keeps us going? Is it our family and friends?...the people who care for us..support us.. love us, fellow chiarians or God? What makes a person with chiari tick? Is our trials, tribulations, testimonies, or longing to make a difference in the world of Chiari? I dont know if any of us know for sure.. need to know or want to know.
I do know Iam a survivor. I survive everyday. I survive every surgery. I survive my symptoms. I survive arrogant doctors. I survive ignorant nurses and office personal. I even survive hurtful comments and advice. I survive. Survive~to continue to live or exist after the death, cessation, or occurance of, to endure or live through (an affliction, adversity, misery, ect), to get along or remain healthy, happy, and unaffected in spite of some occurrence. Synonyms~ Persist, Succeed, Outlive: refer to remaining alive longer than someone else or after some event. Survive usually means to succeed in keeping alive against odds, to live after some event that has threatened one. Outlive: stresses capacity for endurance, the time element, and sometimes a sense of competition. It is also used, however, of a person or object that has lived or lasted beyond a certain point. Im not sure about you, but reread that again, how many times does it say "live"? That is what we do... L~I~V~E!!!! We are supposed to live... even though we have chiari. Survive.. even though we have chiari. Make a difference.. even though we have chiari. Share you story, listen to fellow chiarians challenges; offer love, compassion and comfort to people who are hurting. You know what they are going through. we are all in the same boat. step out of the boat. Reach out and live.

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