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!


Sunday, March 22, 2009

AVM Survivors Network

As many of you know, this past year was a very difficult one for me. I was in bad shape with my AVM, lots of pain, ugly wounds, crazy bleeding... And I can absolutely say that I am feeling so much better today. The difference between today and one year ago is like night and day.

While my treatment with Dr. Yakes has obviously played a huge part in my improvement, I also know that the community over at AVMsurvivors.org has been instrumental in my mental and emotional health. I will be eternally grateful to Ben Munoz for creating the site, and am so vey happy to be a part of this new family.

This morning as I logged into my iGoogle page, I saw that my new friend Scott Orn had posted a link from his blog about AVMSurvivors.org. Turns out that our AVM support network is featured as Site of the Month at Northeast Center for Special Care.

Our AVM family tells Ben all the time how grateful we are, and how he is the coolest kid around. But it is very nice to see him, and the site he created, recognized by others for the benefit it offers to people suffering from Arteriovenous Malformations.

Go Ben!!!

Tuesday, March 17, 2009

Update- AVM Awareness Walk

Hello friends and family!

Just wanted to update you all on my upcoming AVM awareness walk! There are at least 4 other people (families) from my Support Network that are absolutely going to make it to SF, and a few more that are still maybes. We hope to have a large group of AVM survivors, family, and friends to represent us in this walk. I'm super excited to meet everyone in person.

I know there are a some of you that have expressed interested in walking with me. All the details are on TAAF's website, but you can just go straight here to register and choose to join the AVMSurvivors.org team! With luck, it will be a nice sunny day in the city and we can all enjoy a quick 1 mile stroll with the Golden Gate as a backdrop. I would LOVE for you to walk with us!

If you want to stay the night in the city, TAAF has arranged for a room discount at Hotel Del Sol. Josh and I will be staying Saturday night and plan on having a big get together with my friends & family, and host our out of town AVM guests! We hope you will join us and make it an entire weekend of fun. To get the discount rate, call the hotel at 1.877.433.5765 and tell them you are with the TAAF Awareness Walk on May 3rd!

The team's fundraising efforts are paying off as well! We set our goal to raise $3000, and thanks mostly to our Team Leader Kim, we are already at $2570! Nearly there. How wonderful is that?!?!? If you are interested in donating you can visit my page or just to keep tabs on our overall team progress here.

As always, feel free to pass this email along to anyone you think would be interested in the Aneurysm & AVM Awareness Walk!


Wednesday, March 11, 2009

Please sign Andrew's guestbook

Hello friends and family!

I have a special request for all of you today! Please take a moment to go to Andrew's Caring Bridge site and sign his guestbook. With a brain AVM that was treated by craniotomy in 2008, the reoccurence has meant that his family is back in Arizona to fight this battle again.


Andrew will be in tomorrow for his second Craniotomy and is one tough kid! As you can see from his picture, he is ready for "round two" with this AVM and ready to completely knock it out!

Andrew really enjoys reading all the comments that are left and seeing where everyone is from. His goal is to reach 100,000 signatures!!! What a goal to make and I hope you will help him with this!


Saturday, March 7, 2009

Denver Trip...Lucky #13!

Hey everyone! I'm back home from our quick trip to Denver this past week. Treatment went well and the trip was pretty uneventful! I'll be updating my Denver Trip page on my website soon with more details.

I did just want to quickly post up here that I was home and feeling good. I'm a little swollen but not as much as the last two times. I have a little achy pain in my face, but nothing big enough to require anything stronger than some simple tylenol. So no biggie!

Here are a couple of pics from the trip! First two are the previews of my new "glamour gown" that I made to wear instead of he hospital issued ones. I did my stroll through the nurses station and made sure the other patients were jealous! Really, I have NO desire to be the center of attention! ;)

Then of course, are the "right after treatment" pic, and the "day after treatment" pic. Not too bad!

So that is my quick update. Will get my website updated soon!!! Thanks to everyone for checking up on me all the time and the well wishes!