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...

Tuesday, October 21, 2008


As you can see..I added a link for the Spoon Theory.. I think it is a great tool to use when trying to explain to family and friends what it is like living with a chronic illness everyday. My daughter was sitting here this morning while I was checking my email..and noticed this new link. She wanted to know what it was..so I read her the story. After reading it to her she came up with a short poem about spoons...and I thought I would share it.

As long as you wear the spoon of the day
You will be okay for the rest of the day

By Tori Hall

1 comment:

Lisa said...

Thank you for posting "spoons". I posted it on my blog as well. I think it's a great story. I was directed to your blog by my friend Lacie. I do not have chiari, but did have a double disc anterior cervical fusion in March. It's truly inspirational all you have been through. I wish you health and happiness!


Chiari Interview