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Wednesday, February 25, 2009

AVM News... two for the Road.


one...

Well, this is awkward...

Like running into someone you once dated, who one day, without explanation, just stopped calling. Everything seemed to be going so well, and then--Poof! You see him at the farmers market one Sunday morning, walking hand in hand with someone who is not you, buying flowers for their table, or some stupid arugula for the salad they will later prepare together, and maybe you just want to snatch their Venti lattes and scald the smugness right off of their pretentious little life. Believe me, I understand, but please, before you cause a scene, hear me out and give me a second chance! It's not you, it's me!

Doing the blog was really getting me down. It was a very long year, filled with periods of deep anxiety and depression. The more I thought about or talked about the AVM, the more anxious and depressed I became. Waiting 12 months to have my first post-gamma MRI, with no (medical) encouragement was driving me mad. Every day I feared that the gamma knife was not working, that I was going to have a bleed...I had to stop thinking about it for a while. Like a prisoner, I had to do my own time. A year has passed, and I am eagerly awaiting my appointemnt to ge before the parole board (otherwise known as the MRI tech, radiologist and neurologist.) I am hoping that they will give me life.
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two...
My wife is walking for AVM Awareness! Please help if you can!Hey everyone! I'm posting this up for Shalon, (my wife for those who we haven't met yet)! It would be great if you could help, thanks for checking it out!

Also, here is a link to her website: Home ?(Shalon's AVM Story)?



Hello friends & family!

As you all know, I've been fighting this AVM my entire life. And most of you have been there to witness my struggles and my triumphs! Recently you have all been so supportive of my journey through visiting my website and my blog, and by supporting me in my frequent trips to Denver. And I am so very thankful to have all of you in my life.

On May 3rd Josh & I will be participating in an awareness walk in SF. I would LOVE for you to JOIN ME IN WALKING to raise awareness. I know many of you are local, so take the short drive to the city and enjoy the sites as we do a quick 1 mile walk at Crissy Fields. It will be a fun day!

The Aneurysm & AVM Foundation (TAAF) supports those affected by BRAIN AVM's And while mine is not in my brain, the research will ultimately benefit all of us suffering from this condition. Plus I have met so many wonderful "Brainers" through our support network at AVM Survivors Network: AVM Support Group - We're AVM Survivors, Here For Your Support.... They are my family and I am dedicated to supporting this cause!


For information about the walk, and to register, please visit the page below. When you register you want to join TEAM AVMsurvivors.org!

TAAF: Events: 4th Annual Awareness Walk

If you can't make the walk, but would still like to participate, I also have a fund raising page set up for donations. I realize that many of you have already donated to me personally to help with my trip expenses, and don't expect that you will continue to donate to everything I get involved with! I am so thankful for the donations I have already received. I can't thank you all enough.

However, if you are interested please visit the page below.

Active.com Donations

Please forward this email to anyone you think would be interested in being involved with the AVM Awareness walk.

I hope to see many of you in the city in May!
Shalon


__________________
Joshua


“Some dream in color, I dream in 4 wheel drive."


My Wife's AVM story


www.avmsurvivors.org

www.findchristiewilson.com

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Yep, it's me...
To give you an idea of why I put books from Margret Weis in , you really have to read them.
Thay are just DA%M good.

I am home today. And so tired from yesterday, I need to slow down when there... good luck.
People ask what is it like having an AVM?
It's real hard to say. It is like having a piece of your brain missing. You remember what it was like when you had it.... but when you go off and try to use it... you just can't do it.... it is frustrating.

Well enough of me bitching about things I cannot fix.
Here have some youtube.


There ya go... keep smiling.

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