I have alcohol running through my veins!!!!

Literally...well, ok not really. But I do get alcohol injections about once a month (and not the "fun" kind!)

I have a facial Arteriovenous Malformation (AVM) and am receiving ethyl alcohol embolizations with Dr. Wayne Yakes in Denver.

So while the alcohol isn't actually running through my veins (that would be really bad) it is being injected into them to destroy the AVM vessels and eventually provide a cure!

Check out my website to read my story about life with a facial AVM, meet my doctors, and stay up to date on my treatments through my "Denver Trip" reports!


Thursday, August 27, 2009

What!!! I'm totally the athletic type...

So yes, I'm sorta crazy and now think that I'm a runner. Ok, not really. I do know I could never really be a runner. Carrie can back me up on this one cause she used to try to make me run with her in high school. And that was really just a quick "jog" around the block. :)

But on October 4th Josh and I are going to participate in the San Jose Rock & Roll 1/2 Marathon! I'm hoping I can finish in the 4 hour time limit. :) no problem, right?!?!?

A few friends are already on board to do the run, and of course I'm convincing everyone to wear AVM T-shirts. I'm actually thinking we may need to make new, cool, "rock" themed T's for the race.

This is nothing formal, just a fun time to get together with friends, raise a little AVM awareness, and go out for some good food after the race. So for my Bay Area friends, please consider joining us for the day!


Tuesday, August 11, 2009

Video to spread awareness

Hello all of my wonderful people!

I wanted to share this wonderful video with all of you. It isn't specifically for AVM's but it is related and created by the wonderful Ben Munoz who is the brain child (sorry I couldn't resist!) behind AVM Survivors Network.

Read Scott's note here from his blog Kenny Kellogg and go on You Tube to help promote the video!!!

I am continually amazed by these guys, their determination to help support people suffering from rare medical conditions, and their continued effort to get the word out. What an admirable mission they are on.

I feel so very lucky to be a small part of this and hope you all will support me by recognizing the wonderful opportunity that Ben and his friends are providing to us. So do as Scott suggests, help us spread the word!!! Reblog, add to facebook, vote for the video on you tube! It will only take a moment but that small effort can make a real difference.


Wednesday, August 5, 2009

How time flies!

We are back in Denver already. It's hard to believe that it's been four weeks and that it's already time for another treatment. But it is, so here we are!

I am meeting with the Plastics doc, Dr Snively, today to see what's going on with the wart hog. I actually kinda think it's getting a little better. Except I've been very leaky lately. It's just gross. ha ha! I don't really care but I do feel sorry for the people who see me everyday and have to be grossed out by the constant plama fluid leaking from my wart hog. I mean really, who wants to be subjected to that?!?! As one of my employees put it "lots of eye contact!" Nice to know they have a strategy to deal with me! :)

Josh and I hope to make a drive out to Pikes Peak and do a little exploring on Friday if I'm up to it. Maybe bring a picnic or have lunch at the super fancy hotel out there. We'll see. So I may have some fun pics to post in the next few days (since I think I'm a photographer!)

And of course I have a new gown. Even bought a serger although I was so sad cause I don't physically have it yet. So this gown is the old fashioned regular sewing kind. And as always, I don't have enough time to do things, so I was frantically trying to finish last night. Didn't get to make a bag to match, but got the gown and cap done. And still managed about 3 hours of sleep before heading to the airport. I'm a multi-tasker! :)

Tomorrow is treatment #18, and I'll let you all know how it went. Don't forget to check out my website and read all about trip #17... Here is a quick teaser... Another Shalon Rae!!! Go read it!