About Me

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Virginia Beach, Virginia, United States
I am a wife,mother,and nana learning to live with a disorder called Chiari1 Malformation with syringomelyia & other disorders all related to the chiari.I traveled a long journey too find results and my wish is to help others find help thru my experiences.I have given up a career I worked hard at for over 3 decades, but the 1 thing that I lost, is I am unable to be the mother I had planned and should be to my daughters, and that by far is the greatest loss of all.I was happy to have validation but accepting limitations is difficult for one who was so active and independent and wanted so much more for my children, as we all do as parents. I made friendships that are more valuable to me than any pill. They make me smile, laugh, and cry,but most of all they saved me from the aloneness.My wish. after a cure is that someday I can turn to a neighbor, new friend, or even a medical professional and when I say I have Chiari the answer will not be "Chiari what is that?" Wellcome to my journey into discovering all I can about my disorders and try to bring awareness and maybe share a laugh with someone and let them know that they too will never have to travel this road alone.

Saturday, September 13, 2008

Park in the handicapped without others seeing red

From sheilas family and stuff

I just currently read this article again after comming face to face with a women that gave me a look to kill, and I was having a bad day with pain anyway, so I shouted out "do you have any idea what chronic pain is?" Look it up if you don't and keep your dirty looks to yourself." I felt bad because I am usualy not an angry person but was I am totaly feed up with having to explain my life and what a day with pain does to me and my whole famly and that was the last straw. If any of you have not read this article by an angel :Lisa Copen, you need to, especialy when this is chronic illness awareness month and also Chiari awareness month which is the disorder that is near and dear to me, since I have this disorder. So next time when you see someone that may look Ok on the outside remember there are many illnesses that are invisible and they deserve the right to park there too, keep your looks friendly because you never know when you or someone you love will become ill and it won't show to others, how would you want them to be treated?
I don't remember the whole saying or who said it, but you don't know a man/women unless you've walked a day in their shoes. That's powerful and true..


What if you had a headache that never went away

20/20 newscast on you be the Doctor and it's about chiari great new coverage for us and maybe more awareness for others.

Live video of chiari surgery

this is the live link to chiari surgery be carefull it's graphic but great for those wondering what they did or are going to do.