AVM Awareness Walk

Hello everyone!

I know I haven't been a good blogger lately. Been busy with last minute items for the AVM Awareness Walk tomorrow in SF. And we are so excited!!!

So a quick note that I did update my website with info about trip #14. I do still need to upload pics of the trip and specially the cute matching sockies that Alison and I had!!! Soon.

We are in San Francisco now and in the room at Hotel Del Sol. Just got back from our Meet & Greet we had as a little pre-event before the big event tomorrow. It was really meant as a chance for all of the out of towners to meet up and get to know one another before we all walk together in the morning. And it was a great little event. So nice to be able to put a face to the names, shake hands, share some hugs!!! And Kim & Jaclyn brought me a little gift, a GREAT new Tshirt that totally captures my "Alcohol is the new Glue" blog theme. I love it! Thanks ladies. It's perfect and I can't wait to wear it.

We were lucky to have Sports Basement provide a meeting spot for us last minute since our previous plans to BBQ here at the hotel were sabotaged by the rainy weather! We also were fortunate to have Angela with TAAF help arrange this meet & greet and work with Lucca Deli to provide sandwiches for us. So a huge thanks to everyone for making this happen.

I have a slide show of just a few pictures posted on my Picasa page. Unfortunately I was so wrapped up in meeting all of my AVM friends, that I totally forgot about taking pictures until Carrie called and inadvertently reminded me! Thanks C!!!

The walk starts early tomorrow and I promise I will be a much better picture taker this time!!!

Shalon

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!!!

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!

Shalon

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.

http://www.caringbridge.org/visit/andrewbrown

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!

Thanks
Shalon

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!

Walk with me on May 3rd!!!

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 www.AVMsurvivors.org. They are my family and I am dedicated to support 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!

http://www.aneurysmfoundation.org/ev_walk4.html

If you can't make the walk, but would still like to participate, I also have a fundraising 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 alreay received. I can't thank you all enough.

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

http://www.active.com/donate/TAAFwalk/SWhitgob

Please forward this 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

February Fun

Hello to all of my friends, family, and fellow AVM'ers! I haven't updated in a while but have a few things to share!


First I will start off by saying that I completed trip #12 in Denver, and everything went well. I feel good. I feel more like myself than I have in a long while. I finally am starting to feel like a "normal" person again. No longer in constant pain, no longer so worried about bleeding. And boy, is it a relief! I am confident that these treatments are working, and I'm pleased with the progress I have made in the past year. I have no doubt that I am on the right course and just need to stay steady and strong.


You can read my entire trip report on my website here. It was a good trip and I got to meet up with Allison again and this time her mom Jody as well. Also, I had a surprise when Sharon, another woman I met through my website, was also in for treatment the same day. I posted "glamour shots" with both girls in our fashionable hospital gowns! I really need to get a move on making something a little more flattering to wear on the next trip!


The weekend before we left for Denver, Josh and I met up with Camellia and her family for a Tea Party! It was great to meet them after emailing so often with Margie. The girls are beautiful and both very delightful! They played dress up a little with the fun stuff at the tea place (so did Dad!) Camellia ordered Bubble Gum tea (seriously made with bubble gum!) and Serene had Tutti Fruity which she added just the right amount of milk to, in order to create the perfect PINK tea! It was nice to connect with them in person. I think we will definately keep in close contact with this family for years to come!

And finally, I wanted to just update about the upcoming AVM Awareness Walk in May. Details are coming together and I just need to register for the walk and get my donations page up and running. I hope that many of you will be able to join me in person and enjoy a beautiful day in the city, walking at Crissy Fields for something that is obviously very important to me!

As always, thanks to everyone for your continued support, encouragement, and love!

Shalon