Sunday, June 28, 2009

Hi Guys

Sorry about taking so long to figure this out. I'm not too technically savvy. But if I'm bored enough I can figure about anything out if accompanied by simple explanations. LOL
If you guys will read my last post. I have another option if the ninth doesn't work out, let me know if Saturday the 11Th works. I'm thinking morningish .... like ten. It's not football season yet, and soccer season is over so my Saturdays are safe for about two more months. Late Aug. that will change. Please get back to me, I think there's a way for you to be able to text a comment to this blog, and of course I think if you email back it'll get to me pretty quick. That is if I understand what I just did completely. LOL Don't count on that one. I hope I do!!!
Later
Kelly

Thursday, June 25, 2009

It's time we all got together. Announcing our First Meeting

Hello Everyone,
Thank you for getting on this site and showing your interest in setting up what I hope will one day be the strongest Chiari Network in the Nation. I've had the opportunity to speak with almost each of you and there is one thing each of us share in common - we all feel the need for a support group. If the six of us feel the need, can you imagine how many others there are?
I would like to get us all together along with any supportive family members or friends you can find. My goal date for us meeting is July ninth, two weeks from today. I'm currently looking for a central meeting place. We are currently stretched from Layton to Provo. I don't mind traveling, it's just me up north here and I wont require any of you to travel this way. At least not yet. Please let me know if the ninth works for each of you. The time I'm aiming for is 7pm. My first thought of a meeting place is my sisters house in Herriman. Is that a problem for anyone or do any of you have any other ideas? Right now this is just an idea I have. We aren't going to be small enough to meet in a home for long. Though, I am seriously considering us to be a closed committee. We'll discuss that on the ninth.
I need a really fast response from everyone, and, if you have any others you know about who have Chiari please invite them. We have a lot to do and our time is decreasing every day. Alisa asked if I needed her contact information, I do, I need to know how to contact each of you. Please respond to this by leaving a comment to this blog.
Thank you guys, every one of you, we're pioneers fighting for a very necessary cause, to improve, preserve, and strengthen a very special group of people. As soon as I hear back from you I will be posting a meeting agenda. I want each of you to know this one thing, I am merely the organizer here I'm no different than each of you except that I don't want anyone else to go through what I have and if I can prevent anyone from having a future like my past I will be seriously happy.
Please answer me soon, very soon.
Thank you all Kelly

Friday, June 5, 2009

New Focus for This Site

I want to let everyone know that this is a Chiari Utah site. This page will take a different change in focus from here on out. Yes, I will add my personal stories, but it will also be a place of support for those in Utah who will be seeking help. The purpose is as the web site says www.acmzipperheadsunite.blogspot.com.

There will be business cards circulating through out Utah at various Dr's offices and hospitals where we know that there will be patients attending. It is vital that we find each and every person with Chiari in the state. This site will show the progress of Utah's efforts to establish a state chapter. The most important part of this site is to get an active physical support group going. We are well on our way to do so. I ask that as you come to this site and you read this post that each of you weather you yourself physically have Chiari or you if have Chiari vicariously through someone you love.

I am currently in the process of writing a proclamation for the state of Utah. The next step is to add to it as many of our personal stories as I can. Please keep in mind that what will actually be in the proclamation must fit on one page. However we will be sending the proclamation and each personal story to the Governor of Utah which has changed and forgive me but I can't recall the name of the new Governor. We will be joining, each person who we locate over the next three months, with the Governor and the TV, radio, and area news papers to sign this proclamation in September which has been designated as Chiari Awareness Month nation wide.

We have hopefully joining with us on the board a Lawyer who is the father of Bryce Foster a zipperhead from Salt Lake City. Who oddly enough is also related to Bill O'riely (plz excuse my spelling). I also have two other prominent Utahans I am hoping to add to our board.
This is not a me effort. I need the help of all of you with Chiari and who are family members of Chiarians. I love that word. It nearly makes us a whole other culture. Maybe in a way we are.

WE DO NOT HAVE A GOOD KNOWLEDGEABLE NEURO TEAM IN THE STATE OF UTAH. IT'S EXTREMELY IMPORTANT THAT YOU LEARN AS MUCH ABOUT YOURSELF IN REGARDS TO THE DIFFERENT FINDINGS INVOLVED IN CHIARI AS THE KNOWLEDGE OF IT EVOLVES. IT CAN EFFECT THE WAY THE CERTAIN SURGERIES WILL EFFECT YOU AND IT CAN HELP YOU IN YOUR DECISIONS OF HOW TO MAINTAIN OR REGAIN YOUR QUALITY OF LIFE. Be proactive, fight for yourself. You are not a Guinea pig and no Dr. or surgeon has the right to just try out some idea on you.

We need to stand together. Because this is a lonely difficult battle, and it can be waring on our family members, but together we can share these stories, our pains, our fears, our frustrations, our extreme pain, and the very difficult lonely battle we are fighting with each other. There is no judgemental attitudes among each other. Don't run away from this battle. Don't be afraid to face and accept it. Doing so can damage you for the rest of your life. Physically and even emotionally.
WE ARE STRONGER TOGETHER!!!!
LET'S DO THIS!!!!!!!!!!!!

A Special Thank You

This is just to let each of you know that I wouldn't have done any of this had it not been for a dear person who helped me arrive at a place in my life that I really didn't ever want to be. I spent too many years having a condition that I was fighting to ignore and hope away.

Thank you Becky Andrews, LPC, who went through back doors as a therapist to get me to where I could accept myself with Chiari and my future whatever it brings. She is the reason I started blogging, she's the reason I agreed to setting up this Utah Chapter, she's the reason I know I can live even with Chiari and continue forward with a goal to help others. I didn't trust her as a therapist, I didn't believe she could get me to pull things out of myself and talk about them. When I looked at her as a therapist I couldn't, when I believed her to be a friend it was like flowing water.

I told her once that she'd never be able to get me to open up. She said "Oh, I have ways". She was right. Ya know, it's funny - and she may never know this. But she brought me even higher than ever just over this past week. "Little Miracles". I'm sitting here deep in thought - "She did it - boy - she really did it". She made it so I don't mind going to sleep at night, because waking up in the morning even if there are more mornings where I feel bad still than there are good, I like waking up. Thank you Becky. Thank you!

P.S. Do not judge my spelling. Too many surgeries and brain injeries and I just can't do it very well any more. I don't care, it could be worse. LOL