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!


Saturday, September 27, 2008

Trip #8 down!

Just got back from Denver and have now completed 8 trips. So I'm well on my way to being AVM free. The trip went well and I'm feeling strong. Just a minor amount of swelling this time, but lots more "hard" area's in my cheek. It is probably the weirdest part of this treatment...to end up with hard areas. And then those areas sorta stay looking swollen. But whatever, I seriously could care less about that and it will eventually all go away with plastic reconstruction.

I've updated my website with Trip #8's report and all the details including my H3 experience, and Dr. Reeds fun venture into Showbiz!!! Yes, he really is going to be on TV and I'm ready to give him a full report on my next trip in October!

Again, a super huge thanks to Jenn Astwood for letting us stay at her Condo, and to Herdis for meeting us for the key exchange!

My lip is now totally healed! Yay! Just a little unstable, but no more wound. It is so nice to be able to actually put some chapstick on and rub my lips together like a normal person! Not to mention Josh can finally kiss me again! :) I guess that should have been the first thing I listed... :)

Thanks for checking in and reading my blog and website. I really do appreciate all of the support.

Friday, September 12, 2008

Andrea's AVM story!

Andrea has posted her story and her BEAUTIFUL picture up on my website! Please take a moment to visit my AVM Sisters page, and read about her experience and the battle she is facing to get approval for alcohol treatments.

She has been dealing with complications from her AVM, all the while preparing for and fighting her denial through an appeal. What a strong and determined woman! I'm so glad to have her as my "AVM Sister!"

Thursday, September 11, 2008

So many new friends!!!

It has been so exciting for me to make contact with others dealing with an AVM. You all know about Stephanie and Andrea, my first AVM sisters. Then there is Cyndi whom I was able to meet in person on my last trip to Denver, and Keith who has now promised to let me be a star in his movie! (Yes Keith, I've just promoted myself to the star...it's all about me!) And most recently I have introduced you all to Camellia, the most beautiful little girl!

But I'm lucky to be in touch with other AVM-er's as well. From Alaska, to NY, Hawaii, and even Cypress! It is so great to make these connections and to share our experiences. Each of us has such a unique experience, yet we still can relate to each other.

A few nights ago I spent an hour and a half talking with a woman who has an extensive facial AVM! She has had lots of surgeries, embolizations, and complications I have never dreamed of!!! Time flew by as we shared stories and talked about our families. By the end of the conversation we had even promised to become each other's "reality" check when it comes to avoiding stress! (She's even more of a control freak than I am! )

I've also found such a wonderful supportive community at the AVM Survivors Network. I don't know that I have ever seen such a great group of people who are so welcoming, friendly, and interested in helping each other. It is a great place to be!

When I decided to post my story online, I was hopeful that I would find other people like me. I'm so thrilled with the response that I have recieved, and for the new friends I have made!

Friday, September 5, 2008

Go away Scabbies!!!

I'm almost scab free!  The last of my bulky scab came off two days ago and I have just a thin little layer covering the left side of my lip.  Just a very little wound still hanging on.  It's actually been getting worse for the last few days.  Had a few very small bleeds in the past week as well.  But seriously small and easy to deal with.  Yikes!  I'm trying not to equate the tissue breakdown with the fact that I have just gone back to work...maybe it is just a coincidence?!?!?  I'm keeping an eye on it and will probably call Rhonda or Julie next week to get their opinion on it.