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