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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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, May 22, 2014


Good morning...  
   It's a dreary day here in NY.  Day 2 visiting Headacheville...it's not  a large town.  Sometimes I bump into someone I know at the local Cafe'. Occasionally I make plans to meet friends at the park for a picnic. There are only a few who have a perminant residence here. Most of us visit out of desperation to meet others like myself. It's not a relaxing vacation. Its hard work. It forces us to reflect on our lives at home... our friends, family, our future's. At home its difficult to see the big picture. At home we try to be who our friends and family want us to be.... not to "be".."look".. or "act" sick. Chronic illness is always on top of the list... its demands the #1 spot. We may choose to start our lives at #2... but #1 is always there. It's like those silly comercials with the people walking around with an umbrella looming overhead. But ours aren't umbrellas. I dont't "look" sick..handicaped.. or like I have a chronic illness..or should I say.. "many" chronic  illness'.  I get the dirty looks when I park in handicap... or when I take a wheelchair through the airport. What does handicaped look like? I would really like to know. Is there an image I can find that goes with the definition?..other than a stick figure sitting on a half a circle? Is that what Iam? 

  1. 1.
    a condition that markedly restricts a person's ability to function physically, mentally, or socially.
    synonyms:disability, physical abnormality, mental abnormality, defectimpairment,afflictiondeficiencydysfunction More
    This is the definition I found for handicap.  I dont see anything in there that says... Looks sick. Thats why some chronic illness' are refered to as "invisible disabilities".
    Its not always something obvious. So why treat us like were benefiting from being disabled? Do you think that if you ask any 3rd grader what he/she wants to be when they grow up that they would say disabled? NO. Is not like some kind of prize you win in a box of Cracker Jax. We dont ask for it. There are some people who limit thier thinking around #1.. and then there are people who start multiplying at #2. We have to make a choice to start at #2. Its not easy to do.. but if we don't ... we will only be our illness. I know that is not what I want to be. Its a factor in my lifes equation... but not the final answer of my life. 

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