Wednesday, July 6, 2011

Two recent news articles that talk about Chiari...

A newstory from Austin.

A newstory from Burleson.

Friday, July 1, 2011

It just gets better... NOT!

Well my husband's insurance does kick in August 1st but here's the kicker they won't pay for pre-existing conditions for 1 year!! GREAT!! I am a walking pre-existing condition. Seriously why do things have to be so difficult!!

Friday, June 24, 2011

No meds...

So I haven't refilled my Topamax for this month and boy can I tell... I haven't had insurance in over a year and now no Drs will fill it for me because I have run out of refills, I can't go to the Pain Management dr because they don't see folks without insurance. I saw my PCP just to get some meds but he is now saying I have to see the specialist. So now I wait (not so patiently) for my husbands insurance to kick in in August!!

This is going to be a super long month!!

Friday, June 17, 2011

Nice new article.

Yesterday I was scanning twitter and was pleasantly surprised to see a local news article on a man with Chiari... WHAT?!?! They actually recognized that there are people living daily with this disease. Now I realize that I am one of the lucky ones. I have random symptoms headaches (daily) and right now this blasted feeling of bugs crawling on me, and maybe some numbness here or there. And of course the dreaded never being able to remember ANYTHING I wanted to say (which of course makes holding a conversation almost embarrassing) but these symptoms are totally doable!! I can thrive. This story took me back to thankful...

Anyways, here it is for you all!! And once again I was just surprised it was in my local newspaper!!

Now the flaws, the title... I know they had to make it all dramatic to get someone to read it and I realize that Chiari is HARD and dibilitating, but really... Yes many of us will die and many have... But there are many of us living as well!! Yea for him for getting to be in the study but why was he chosen, in fact how??? Why wasn't I asked? Or you? Or better yet how do we get chosen??? So many questions I now have!!!

Tuesday, January 4, 2011

Great Video

Julie Carter is a great advocate for Chiari, in fact a number of years ago her family was featured on "Home Makeover" because she spent so much time working for US that she didn't have enough time or money to repair her home. Please watch this wonderful video she has put together and pass it on!!!