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, November 29, 2008

Lot's of updates!

Hello everyone!

I hope you all had a wonderful Thanksgiving holiday. I know that I have many things to be thankful for, including all of our friends and family that continue to be so supportive of Josh and I through this AVM journey!

I have many updates today. :)

My Trip Report is up on my website for Trip #10.

Added a couple of pics to my Timeline, as well as to the Meeting Cyndi slideshows.

More photos of Nathan "our miracle baby" have been added.

I've recently been in contact with Arie and her mom Jody, another Yakes patient, and have updated with pictures of this beautiful little girl and a link to her story. I'm so jealous of all of her freckles!

Also, check out Cyndi's blog to read about her most recent adventure in Denver!

I think that is it!

As for me, I'm finally starting to feel like myself again. Still not quite 100% but I'm doing well and feeling much better. Josh has been taking care of me and you all know how much I enjoy being spoiled by him!

Hope you all have a wonderful day!


Thursday, November 27, 2008

Nathan's Craniotomy a success!!!!

What wonderful Thanksgiving news! Nathan's surgery yesterday was a success and he is doing well. I'm so happy for this beautiful little family and it is such a reminder that we have many things to be thankful for in our lives. Not everything is easy or the way we want it to be, but even in struggles and hardships there are great things that happen!

Here is the latest post from Jaimee on Nathan's progress!

Monday, November 24, 2008

Trip #10...not my favorite!

Hey everyone,

Sorry for the delay in posting an update. This has been one of my harder recoveries and I just haven't really felt up to typing a posting. I'll update my trip report soon, cause the trip was a pretty good one...just the recovery sucks.

I'm pretty swollen this time. The first night my throat swelled up so much that I couldn't even swallow my pills. My sister had to crush up my Prednisone & Vicodin and put into water for me to drink. New plan-no water, add to juice!!! It was seriously grody and I didn't think I was going to be able to drink it! But I'm a trooper and got it down. Luckily, my throat is almost back to normal. Although I still have very little voice...I'm all raspy...

My face is still very swollen, including the area by my temple. And my ear is totally plugged up and driving me crazy. I've also had some bleeding, both from my gums (which was already happening pre-treatment and is really just some oozing although it seems to be more than before Friday.) I have an area inside my mouth where the wound used to be that now looks like a little blood blister. And ya, been having ugly arterial bleeding from that. No fun... I stayed home from work today and don't see being able to go in tomorrow either. I'm just a miserable little girl at the moment :(

But I think the treatment went well and I have just been spoiled because the last few have gone so well. Gave me a false sense of this being an "easy" journey. How quickly I forgot the sucky part! But how lucky for me to have had the opportunity to forget the sucky part!!!

So sorry for the sad little posting, I'll be better soon, update my trip report, and be back here with a much better blog posting!!

As always, thanks for the support and well wishes. It means the world to us!

Sunday, November 23, 2008

Please keep Nathan in your thoughts and prayers!

Nathan is a little baby who is dealing with multiple AVM's in his brain. Earlier this year, they thought they had treated it completely. Unfortunately he has suffered a set back and is at UCSF with a pretty ominous prognosis.

You can read about his story here. http://www.nathanj125.com/ and the latest news about his condition here http://www.avmsurvivors.org/profiles/blogs/ominious-prognosiswe-might

What a difficult situation for this family to find themselves in. I really would appreciate all of the prayers, healing thoughts, whatever you can send to Nathan!!!

Sunday, November 16, 2008

Another AVM survivor

I got an email this morning from Donna, a woman whom I have been emailing with who has a brain AVM. When we first began talking, she was having embolizations for the AVM and was in alot of pain from severe headaches and other side effects. She ended up needing to have surgery instead of continuing with the embo's because her AVM was causing heart problems.

I continue to be amazed with the different symptoms and side effects of these things. Donna's arteries were so enlarged that when she swallowed, a nerve was being constricted causing her to become lightheaded to the point of blackouts! It also would cause her heart rate to drop drastically and then her heart was working overtime to catch up! Crazyness!!!

Anyways, the surgery was a success and she can now claim to be an AVM Survivor! She still has the road to recovery and will need some therapy, but feels like the worst is behind her.

Such wonderful news and I couldn't be happier to be a small part of her experience and to be able to share in her joy! Please keep Donna in your thoughts and send her some good healing vibes!

Being able to make contact with all of the wonderful AVMer's has been a surprising benefit to such an ugly medical issue. I never anticipated that I would experience such joy and happiness from anything related to this AVM. But I am glad that I have the opportunity!


Saturday, November 1, 2008

A fellow AVMer's beautiful words...

Heros' Undercover
We are the lights to the world that some thing is wrong, we suffer so the truth can be found, and fixed. In the past Miner's took a little Sparrow into the mine with them, so the miner's lives could be saved. The little sparrows' gave their lives, and this warned the Miner's that poisonous gases where in the air. We are the massagers, we are loving and sensitive, we are chosen to be the beacons, too shine the light on the unknown. Deep in our hearts we know; others could not endure the physical and emotions pain we have lived thought. We are the heros' under cover.

This message was posted as a blog by Karen Robertson at www.avmsurvivors.org

She was nice enough to let me borrow and share with all of you.