Facial AVM...

Support Group Team!

Hi Everyone!

How are you? My brother-in-law Jim was just saying that he thought I was doing pretty well, since I hadn't written anything on my blog! Unfortunately I've just been dragging and apparently too drowsy to sit and write! I've been having some problems controlling my pain these days and all the meds I take make me very sleepy! The area near the hole in my ear is really looking bad - very scabby! I haven't been able to get in to see Dr. Zane (ENT) because he is on vacation! He would be debriding the scabbing. I've had lots of drainage from my ear too - goopy stuff, ugh! Gross! Yes folks, this is my life right now! I also haven't been able to see my favorite nurse, Noel @ woundcare because of some changes in the office he works in! Went in a couple weeks ago to find that Noel could not see me, because he only worked for the other doctor in that wound care group! Needless to say I was extremely upset! I was able to switch to the other doctor - but when I arrived for my appt. the following week - I was told Noel was on vacation, so I left! Well now the new doctor I was going to see was upset because I left and now she refuses to see me! The former doctor I was seeing agreed to see me, but now I'm being told that I cannot be guaranteed Noel and I may have to wait until he sees all his other patients, before he can see me! Not sure how that's going to work out, but we'll see on the 2nd of next month!

more to read....
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The Facial AVM patient above is typical of a facial AVM case. Her's is a little large.
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youtube...

Steve Martin Magic
That's funny!

good bye for now...

Camellia girl w/ avm!

Just wanted to post a link to a website for Camellia!

Camellia is a beautiful little girl with a facial AVM. Her story has many similarities to mine as a child. However, it sounds like she is having a rougher time than I did at that age. But luckily, she is already being treated by Dr. Yakes and although this treatment is hard for such a little girl, I hope that it means Camellia will grow up healthy, happy, and AVM free!!!

Camellia's mom keeps an online journal detailing their journey and treatments. Please visit her site and sign her guestbook!!!

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

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Hello,

Sorry to keep you all hanging. I just spent an hour writing a journal entry and it got lost in space. How frustrating, especially since it took me so many days to get the strength to write again. Anyway, I just couldn't find the words on Tuesday to express what I was feeling. After seeing her and the side effects of the treatment, I became numb. Knowing that we need to do this so many times, made me angry. Accepting that is the only way for a cure, is frightening. Trusting that this is the right path we are on is sometimes hard to do.

As we walked through the airport with all the on-lookers, my fierceness as a mother showed up. I wanted to protect her from the stares. She held my hand and walked tall looking back at each and everyone that looked at her.

Today, I saw my little Camellia shine through for the first time since her surgery. She toe tapped and shimmy-ed her hips the way she does when she is dancing and experiencing joy. Seeing this made me know that she is going to be alright.

I want to thank you all for continuing to support us through this journey. You have seen many parts of me. I am angry at times and hopeful at times. I may lose my faith and then bring it back when I feel stronger. Thank you for hearing me.

Namaste

From...

That's it... a bad day... Post something to her guestbook. PLEASE!!!!