Living with a Facial ArterioVenous Malformation (AVM)
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, April 28, 2011
AVM Walk this weekend!
Hello family and friends!
It’s that time of year again for the AVM Awareness walk in San Francisco. This is the sixth year for the walk, and the third time I will be participating. It’s so very awesome that I have the opportunity to be part of this, to help raise awareness, to support my “brainer” AVM friends, and to be an advocate for AVM support.
A quick update about me. It’s just over six months since major resection of my AVM. Totally cool scars to prove it, and a much smaller face. I’m GORGEOUS! You can see just how gorgeous here!
But to be serious, I feel great. I know that I’m healthier and safer. The daily fear that I lived with for years is barely a thought at all. The pain that would attack…it just doesn’t often. And the scary bleeding episodes that would send me into instant panic are practically just a memory. I can’t explain the relief and sense of wellness this has been. And if that isn’t enough, I officially got an “almost done” on my chart with Dr. Yakes on April 7th. This means that my monthly trips for alcohol embolizations are coming to a close. And while I’m hesitant to claim to be AVM Free…well I’m confident I’m pretty close to it and it’s thrilling.
It’s just over three years, and I can see the light at the end of the tunnel. And while my personal AVM journey may be coming to an end, I will always want to be involved, to support, and to advocate for this. The positive impact I have seen my story make is absolutely my biggest and best accomplishment. To know that my struggle, my perseverance, my totally ugly hospital photos, and my conversations with other AVMers has helped people, even just a little…there is no better feeling in the world. This hasn’t been an easy road for so many reasons, but the benefit, the goodness, the love; it’s all so very worth it.
So HELP ME OUT! I’ll even give you a hug... for $25.00!
We are currently fundraising for both TAAF and AVMSurvivors Network. You can find out all the details by visiting our fundraising site at www.indiegogo.com/avmsurvivors and making a small donation to support me. We have some great “perks” this year to show our appreciation for your support. And one of those perks is a hug from me. You know you want one! But we also have other very cool items to choose from. If no other reason head over to take a look at my super cool fundraising video. I missed my calling as a film maker. It might just be the best video ever. I promise I’m not making it up!
And please, help me spread the word. Post a link to the fundraising site on your facebook page or blog. Forward this email to anyone you think may be interested in supporting AVM and Aneurysm awareness, research, and support. There are many people affected by brain injuries each year (including my dad this past September) and everything we can do to help is great. I mean there really is no negative side to it. It really is ALL GOOD.
Thanks to everyone for the endless support you have always given me. People ask all the time how I can be so happy, so confident, and so “ok” with all of this. And really the answer is that I have always been loved by friends and family. I’ve been treated like a normal person, made to feel beautiful, allowed to just be me without having to apologize for the way I look. And THAT is 100% the reason that I’m able and want to pass that along to others. My “goodness” in all of this, my drive to help others, and my ability to actually do that comes from all of you and the generosity you have shown me in this life. You are all wonderful and I love having so many special people in my life.