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...

Monday, December 27, 2010

New Year 2011!

As the New Year approaches.. I always seem to look to the past for change in the future. 2010 was another physically exhausting year. The past 3 years have the been the most challenging years of my life. For someone who was independent and headstrong in has been a humbling experience. Today I posted a quote on Facebook.. I thought it was words to live by when I found it .. and just had to share it. "Tragedy can make you bitter or better". SO TURE! In reading this.. I realized something.. it is our choice! Not our circumstances, our physical health, our finances, friends or family.. just a choice. I started reading a book that is so awesome! "Being Sick Well" by Jeffery H. Boyd. He shares the story of his wife who had 2 heart attacks, 2 strokes, diabetes, her kidneys failed, went on dialysis, had bypass surgery on her legs, eventually lost both her legs, in last years of her life she went blind and her hands became numb. She passed away at age 50. The point of her story was that she continued to be upbeat and optimistic through it all. She enjoyed life to the fullest. This book not only shares her story, but many others who share the same out look on life with chronic illness'. It is a must read for anyone who lives with a chronic illness or cares for someone who has a chronic illness. I consider myself to be someone who is optimistic. I dont dwell on "why me". Iam not a daily pity party. I ask what is it that Iam supposed to do with it? I think that falls in the "better" part. I feel I have changed and grown as a mother, wife and friend. It clarifies everything in your life. Whats important and whats worth your time. It maginifies what used to be the "small" things in life. You appreciate the days that you feel good and the days you dont. I also have a strong faith. I believe God loves me, renews my strength and is merciful. We all need to believe in something. Its finding that something that is a constant quest we are all on.. including the healthy people. So in this "New" Year.. I pray that you will ponder that question.. and seek it out. Happy New Year!! May you be blessed with loving friends and family!


Patricia said...

I was diagnosed with Spina Bifida and Tethered Cord Syndrome last year. I had surgery for the TCS in June of 2010. I continue to struggle with symptoms and recently had an EMG then an MRI due to loss of sensation, numbness and weakness in leg, and bladder and bowl issues. This is all scary stuff and people never realize just how much this changes not only the person suffering with the disease but also the people that care for them. It is nice to hear that others are going through similar medical stuff and the emotional roller coaster.

Tracy said...

Dee, you & I met up at NorthShore when I had my TCS. I spoke to you on the phone before we met and were supposed to go to lunch. Was in 2008? Would love to hear from you again, still having problems. It seemed you and I were having similar issues. If your still on ASAP you can pm me "toport20" . Hope things are well!!

brenda said...

Hello I was also born with a tetherd cord at birth. They did not find my problem until age 32 despite all the doctor visits througout my childhood. I was very active and played alot of sports would fall down for no reason or wake up the next day and could not move my legs, the docs would just say a pulled mucsle. As time went on the pain got worse and a chiro finally did a test and found my problem. I did go to a special Neuro and did have the surgery but it really did not help. I have times when my back "locks up" and I cannot move at all, last time it lasted 8 weeks, longest ever I didnt ever think I would walk again. There are alot of other symptoms that I face with this. My back did leg go to where I could walk but the severe pain never left. I have also had 2 cervical fusion and now 3 more bad disc. Its really hard to face this on a daily basis to know that I have to rely on pain meds the rest of my life and my family sure dont understand this at all. Im mom Im not suppose to be down. Im goin to one more neruo just to see if there is anything they can do for me. Now the pain in is my legs, my feet my knees my back, just say my whole body, I am tired weak and never have any energy, Its just really hard to deal with.

BearlyBurnt said...

Hey:) I'm Alicia. I have CM & SM
I stumbled on your blog through google.


WhiteAngel said...

Hi and thank's for ur story, I'm sorry you have so much pain, not fun. thanks for my links on your site...i'm about to get my mri results soon not sure i want to know...you can read my story her... http://whiteangel0.blogspot.com.au/

and it's not nice to know that others are suffering in this way.. hope to hear from you take care

Chiari Interview