Tuesday, September 15, 2009

We're now on FaceBook!!!! Join up Guys!!!!!

Tuesday, September 8, 2009

I think many of you get double posts from me. You may have recieved a post from my other site if you did than you got my big worded, emotional, tempertantrum. It was posted to the wrong site it was supposed to come to this site.

I want to get together on Saturday for brunch. If you can please RSVP me within the next few days. Preferably before Thursday so we can plan where and what time. I will adjust my schedule that morning to be there at the best time for each of you.

Please come.

I have this site set up to send emails to those whose contact information I have. Some don't recieve these posts in your email because I don't know how to get them to you. I know it's hard to get on the site, hard to remember to get on the site. I've made a commitment to make this happen and I'm moving forward even if I have to do it alone. I'll say it again though, it wont move as quickly as it needs to, nor will it be as helpful to others if I do this alone. We will have a much stronger program here in Utah if I can get a committee committed to help. Trust me, I know what it feels like to wake up every morning and really just not want to do anything. Even not be able to do anything.

I am trying to push myself past that because my life over the past four years has been lived 85% of the time from my bed. I've missed a lot of my childrens funnest growing up years, and I have ached and cried over it far too much. I figure what I've been through hasn't killed me, I'm still here, so I better do what I can to make it worth living for me. I'm putting myself through a lot right now in an effort to get to that point. My biggest reason for establishing this group is because I have been a test subject for the Chiari Institute in New York. Much of what I've had to go through could have been avoided. I want to keep others from having to live the nightmare I've had to live, and I want to help you help yourself, and others to improve your quality of life.

So - please RSVP ASAP and I'll cut the acrinyms here :-) and I hope to see you all on Saturday.
Answer back!!
Have a pain free week - hey I'd even be glad for a pain free day.

Sunday, August 30, 2009

SORRY GUYS! SORRY! I had a really bad set back and am just getting back on my feet.

I need support on this meeting. IT HAS TO HAPPEN! ASAP! Please - let me know you will be there when I set it up. I guess I could have the meeting alone, with myself, however - I already told myself everything I need to tell you so I just now need to know who else wants to hear it and is willing to help.

If your truly reading these posts you have come acquainted with Suzanne who has left two wonderful comments on my most recent post. I am fully in support of Suzanne's idea about having a garage sale and everyone putting what they can in with all proceeds to go to - Suzanne if you'll back me up on this "The Utah Chiari Connection". I am not sure what it takes to become a legally recognized non profit group in the State, but if we do get together, we can start to organize and find the answer to that.

Guys - winter is just a few months away. I personally am already dreading the pain I suffer through during those months between Nov. and March. Yes - I'll loose more weight (Heaven only know's I can alway use that - Now anyway but - almost, not any more) It's a hard way to loose it though. WE NEED TO GET THE SUPPORT GROUPS ESTABLISHED NOW! And we Have To Start FUND RAISING or the first place I purpose that those funds be used will be in effective.

We need Digital Camera's. and wide screen TV's so that the support groups we get actively going on a month to month basis can get to those unable or to far away from the sessions.

I know people need you, I know I need you, maybe you need others. Doesn't matter if you have Chiari yourself or a loved one does it's not an easy road. I will break into my personal self and tell you something not even my husband knows. I can't count the times I've wished in the past that I could take my life. I came very close a few times. A huge % of marriages break up over what we are going through. We can keep that from happening, all of us together. We can help our youngest friend on this site get involved as much as he can at finding others his age and getting teen groups set up. I would have taken my life - however - I've come to depend upon someone I have found has never left my side, and when I've been most alone He's wrapped me in His most loving arms and Carried Me Through. HE - has taught me to value my life - even with Chiari. Sometimes even now it's a hard perspective to keep. I thank Him, I love Him, and I dedicate my life to helping others keep that same perspective. I have spoken to several destitute Chiari Sufferers, we all need help at some time or another at dealing with this painful and lonely malformation. Let's please make sure that we never leave even one of us to suffer it without an understanding ear ever again.

Join with me NOW!!! Please!!!!! We have soooooooooo much to do.

Sunday, August 9, 2009

We're meeting

Hi everyone, I have set up Aug. 18, 2009 at 7:00 to be our first meeting. I am planning to confirm where within the next few days. Please make plans to be there. I'm not going to change the date unless no one RSVP's. I've already heard from two through Face Book. Please let me know one way or another if you can make it. I'll post the place as soon as it's confirmed.

Please leave a comment so I can know.

Thank you to all who have expressed the desire to help. This is the reason I've decided to try once again to set up this meeting. We are not going on anyone elses time frame, we are going on what' best for us. Please be there. If I need to change it to get more people will I may consider changing it one more time. But - I can't keep doing that or it will never happen. So - let's all work together to get here on the 18th.

Thank you

Friday, July 31, 2009

Here we go Utah Chiarians

I expect that we will be seeing a lot of growth on this site over the next few weeks. Guys - we are going to miss the walk this year. Possibly! I'm going to check into that this week.

Okay - here's the thing. Today I am writing the "Proclamation" for the State of Utah. I also am going to call the State Governors office and begin the process of getting this proclamation signed. As the group grows and I am getting active comments from the group we will be making plans to get to the State Capital all of us together and as many news and television stations as we can get there and we are all going to sign this "Proclamation" together. My hopes are to have at least 30 people with Chiari there. I'd even love to see the signiture of little chiari hands on there. This "Proclamation" for Utah is going to be a BIG, HUGELY BIG help for every one of us. It will open awareness and make it easier for applications for Medicare, and Social Security Disability to be accepted. It will help many of us get the Handicapped stickers on our liscence plates easier. It's going to unite the medical community with US as they realize that WE must and will fight to get the best care.

I'm a born fighter guys. The reason I am doing this is because I haven't had to go through all that I have. IF I can keep any of you from going through what I have and am going through. I honestly will be happy. I could die feeling like I left each of you in a better situation.

If WE cannot get the walk organized for this year. OUR next big step is our organizing support groups. "I" don't like all the "I's" in this post. But - time is running out and things need to get going. The reason I don't like the "I's" is this isn't my battle to be fought alone. It's something that WE need to do together. I need an active commitee around me so things will go much better. If I do this along than Utah will not become the best Chiari supported state in the Nation. That's what I want it to be.

I have a lot of goals! I've had to give up a lot of goals because of Chiari. And a whole lot of dreams too. CHIARI DOES THAT! I know I"m not alone. Chiari can't take these goals away. We can't let it.

"I have Chiari, BUT Chiari doesn't have me" that's my " " - I will NEVER LET IT! I wont let it get you either! God Bless ya'all!


Wednesday, July 29, 2009

Hey all of you. Keep a watch out because things are happening.

Tuesday, July 14, 2009

I thought I'd let you all know what we are going to be talking about at the meeting. First of all the month of September has been designated as Chiari Awareness month. I volunteered to establish the activities for the State of Utah. The meeting is to get these things organized. Here is a list of things we will be discussing in the meeting.

#1 Finding as many of the Chiari sufferers in the State of Utah as we can.
#2 The Proclamation on Chiari Awareness
#3 The Chiari walk for the cure
#4 Support Groups

Right now these are pretty much the most important things that need to get accomplished. There are other things that need to be established here in Utah, however those will come. We have much that we need to get going September is right around the corner. I really appreciate your help. I don't even know that I really asked you for your help, that's pretty rude of me. I apologize for that. We need to meet within the next few weeks. I am waiting for some business cards I had made to get here - I'd like to have them with me at the meeting. Again ... thank you for your willingness to help - there are a lot of lonely and struggling chiarians and family members who need help. I look forward to hearing from you all and I look even more forward to meeting you. We have a member of our group heading to NY and the chiari institute for surgery. Keep he and his family in your thoughts and prayers. Bryce and Kellye - our hearts are with you.

Thursday, July 9, 2009

I hate to do this everyone

I'm sorry guys - I didn't get a response back soon enough to set anything up, so we're going to have to schedule another night or sat. morning. Does anyone have a problem with the 16 or the 18Th. It would be 7:00 on the sixteenth, or let's say 11:00 on the 18Th. Does this work for everyone? Please let me know before Monday the 13Th of July so that I have time to set up a place. We could do it tonight here at my house but I live clear in Layton and that would be a long drive for some of you. I'll be looking for your response. Thanks again guys! Kelly p.s. This works for me a bit better anyway because my Grandmother passed away and we're in the middle of that right now in our family.

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!!!

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 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.
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