Saturday, April 11, 2009

She has her own blog...I like her...

"Patient has a small AVM in the brain" Part IV

I demand an addenda to the radiologist's report, and call him for several days until he finally breaks and returns my call at 8pm. It's a war of attrition, and frankly, I have come too far to just surrender now. For his part, he is apologetic and very nice on the phone, though I still think the first report was unforgivably inadequate and unprofessional. It would seem like precision of language would be key in this situation, and that the specialized skills of the radiologist, and the mandate that he and he alone interpret the images, would result in a less laissez-faire assessment. I ask him to bring up the films on his computer while I have him on the phone, and he tells me that the nidus of AVM has shrunken to 9mm by 4mm. This is a reduction of about 50%. My anger towards the radiologist is replaced by gratitude, and relief begins to settle in. About thirty seconds after I hang up I realize that this means that I still have an AVM. That nothing reduces risk except obliteration. That risk is cumulative. That I am getting closer to that 'average age of first bleed' statistic. That I have begun another year exactly were I started the last. When I told my husband that the AVM had shrunk, I actually broke down and started sobbing in the middle of our kitchen. It was hard to explain how I could feel both so happy and so devastated at the same time. More than anything, there was just this overwhelming wave of exhaustion. Tears of joy never tasted saltier.

go pay her a here


I also like the = sign... go figure.

For the last two days I have been "sleepy". And I still feel off... strange.... very strange.

I think I've been waiting for it to be caused by the AVM... and for something to let go... to leave something behind... to stay... but so far nada.

It is strange knowing what is gonna be your end... and wondering how it is gonna show it's ugly face.

It is not something that I am scared of. It just is.

Now I have to decide if I am going to publish this... I think I'm going to... at the risk of my "friends".
You see, I know this makes me sound like I'm depressed... I am not.

but unless they bother to read all the way down... and mull it around in their mines... it is gonna look like I am depressed... I AM NOT!!!!

I am just stating something I think is neat...

okay enough is enough... now I will youtube ya... why? I don't know...

Bob Dylan - Subterranean Homesick Blues

Bob Dylan - Like A Rolling Stone
The first one is for those who r about to lift off....
The second just is...

maby I'll put up some RHPS later... we'll see...


Friday, April 10, 2009

AVM & Me!

AHA/ASA issues guidelines on intracranial neurointerventional procedures.

Dallas, TX - New guidelines from the American Heart Association/American Stroke Association examine the evidence to support neurointerventional procedures in the gamut of intracranial cerebrovascular conditions, ranging from acute ischemic stroke, to ruptured and unruptured aneurysms, to intracranial stenosis and arteriovenous malformations [1].

"It's important to track the levels of evidence as this specialty evolves," said Dr Philip M Meyers (Columbia University College of Physicians and Surgeons, NY), who chaired the writing committee for the new document...

read more... click here



Me; Yesterday I don't know what was going on... if you read me I sounded like I was drunk.
I was not... really!

Today I feel like I have not slept... and I did! I really, really did!

Here it is now a little after 1:00... and I just got up... feel like I won't stay up... strange.

That's enough about me & my little AVM.
I get you some youtube...

Sade - Maureen

Sade - King Of Sorrow

Sade - Love Is Stronger Than Pride

Yea I know that last one has a special meaning for me... c-ya

Thursday, April 09, 2009

There is nothing to report!

guess what?

I got nothing!

Today I got nothing done... that's pretty normal.
I got some thinking done... but even that was pretty useless... I think I am letting this AVM get to me... it just feels like it is bigger than me! I know that is not seance making...

so let me do this...

smart car crash

I kinda like it...

Well I am gonna go... take care...

Wednesday, April 08, 2009

AVM and Led Zeppelin

A separate poster.
It seems like this journey has taken so long, and We've waited for so long to find out whats going to happen, and now that its just around the corner im terrified. This time next week we'l know what they are going to do, wether they are going to let her have the operation or wether they have decided that she just wont survive it...I cant decide what would be for the best? with all the risks involved with surgery would it be better to leave it? And then theres the risks with just leaving it?. Really scared now of what they are going to do and say next week....hardly sleeping, its just such a big decision that we arent going to have any say in....Just felt like ranting...feeling lost all over again.
go give a read...

AVM survivor

Sen. Tim Johnson tours Muenster University Center



The recently opened Muenster University Center was paid a visit Monday by South Dakota’s longest-serving Democratic U.S. Senator, Tim Johnson.

The Vermillion native and USD alumnus greeted students and faculty and took a few photos as he received a tour of the new facility. The building’s namesake, Ted Muenster, and USD President James Abbott guided Johnson on the tour....

for more...


Led Zeppelin Over the Hills and Far Away


Led Zeppelin No Quarter

If you can still believe it ... I still have a headache... Right now it's livable... oh yah... I quit my job yesterday. Now it is a matter of finding one... shoud not be hard to replace... p/t minimum wage is equivalent. I have to get over this headache...

So what do you think... shoud I offer some Led Zeppelin... nah you'll find it in this blog if you are intrested.

Tuesday, April 07, 2009

Jess&Greg an AVM report... no me I feel bad... damn it...


I have a what is called an AVM in my brain. I have brain surgery tomorrow.

It is a knot of blood vessels in the back of my brain that it considered to be a birth defect that as I grew into adulthood it keeps getting tighter and tighter so they have to remove it before it pops. It runs in my family. And they only way you know it is there is to have MRI's and CAT-Scans. My father's popped but we are having mine removed early to avoid it popping during labor

I go in at 8am and it should take about 3 hours. Once I am out of recovery I hope to post an update. If I remember I want to post before I go in too

Our bundle of joy Brendan Caleb is on his way!


Wish them good luck...

it is strang... but this is what I was bloging about...

okay this was fresh... in 2005! Now with the AVM popped I feel even more determined to get to those I have yet to find.
(okay it is an older pic... but hey I look good)
Okay I have this list of people I am looking to reconnect with, but have lost touch with over the years. I wonder if there is any chance that through the principal of separation by degrees that I could post their names here and that someone would eventually run into them and pass this URL on or even my email address?

What the hell let's give it a try.. I will write the name and the last place I saw them, and an approximate year.. pass this on to everyone you can.. just be sure to include the URL here

Gregory Louis Fuller (aka Louis Gregory Fuller) last seen 1968 Grand Rapids Michigan
Karen Denee' Last seen Lake of the Ozarks MO. 1975
Joy George Last Seen Lake of the Ozarks 1975
Alejandro "Alex" Lastra Last seens 1983 Miami FL.
Javaier Lastra Last seen 1981 Miami , FL.
Maria Delgato last seen Miami, FL. 1985
Ann Clexton last seene Miami 1986 FOUND! 11-14-05!!!
John Eby Last seene Miami 1985 found kinda'
Rick Eby Last seen Miami 1985 found!!!
Lidia (or Lydia) Hernandez last seen Miami 1987
Tracy Hernandez last seen Miami 1986
Elmer McDowell last seen Miami 1990
John "ki-ki" Clopton Last seen Miami 1986
Katherine Wyatt (or Fuller or Turnbull) -Talahassee FL 1999 found!
Kyra Wyatt - Tallahassee Florida 1999
Martha "Marti" Findley (or Finley?) - Grand Rapids Michigan 2000
Deborah "Debbie" Viggiani- Naples Florida 1990 found!
Cheryl Viggiani - Naples Florida 1990 Found!
Mike Lyttle- Miami 1990
Danny Wu - Miami 1990
Mike Alverez - Miami 1984
Virginia Harris - Miami 1989
Kevin Connway - Grand Rapids MI 1992
Sue Spicer - Howard City Michigan 1991
Monica Behan (also Fuller and Smith)- Grand Rapids Mi 1997

There are a ton of others that I have lost along the way.. I may come back here and add to this list.
I have looked through Classmates for these folks where I had enough information to do a search, I have also googled the names, but either there was too much information to narrow it down to something relevant, or there was no information I could use to link the found item with the person I was looking for.

So here is where you come in.. and I don't know that this will even work.. but like i said what the hell..
Cut and paste this post into an email and send it out to everyone that is on your mailing list, that will not mind getting it.
Even if their name is not on the list.
Then I ask that they send it on, and so on and so on.
Using the theory of separation by degrees, this email should land in their lap in 15 or so generations of forwards.
If you are named on the list, please come to my URL
and leave me a comment or drop me an email. (see my profile)

Here is an incentive.. I promise that you luck will get no worse than it already was going to be if you forward this to everyone on your emailing list (that will not object to receiving it)
So please forward this, and if you are named in the list please come see me at
thank you.
Sure a few of the found ones I have emailed , thay have emailed and there was nothing in common. But some I have talked with we have struck up a friendship that is really special.


I will quit my job today... all over a stolen up... I do not think they will do anything to the thief... so quitting seems like the only thing to do.

I don't make any money when I don't sell... so this is a big deal.

What I'm going to do with my Tuesdays I don't know yet... we'll see.

Okay for an AVM update... there were no avm's to report... that is a good thing.

so you know what is left... yes it is youtube!

Time After Time- cyndi lauper

and some amazon...

Okay that's that... either today or tomorrow I'll tell you what they said... if they say anything at all.

Monday, April 06, 2009

No avm news... a little bit of youtube

I haven't got no avm stuff... hooray!

This is good... but it is bad for my readers... sorry.

Jimi Hendrix - All Along The Watchtower Live! Isle Of Wight

Jimi Hendrix Purple Haze

Hey Joe - Jimi Hendrix

WOW! He was good!
do me a favor... buy some stuff... please!

That's it... you got the last little piece of me...

Not really... but don't it sound good.

I got to go... be good to one another.
Peace out...

Sunday, April 05, 2009

tODAY IS mY bIRTHDAY! and so AVM news!

Today is my birthday.... horay!

Had one hell of a day yesterday... huge headache. Spent most of the day in bed.
Today looks better... as far as the hurting.
I don't know what to say. (About the AVM and me.) It is large it is in the left part of my brain. Every time I have a headache I think I am going to die. So far no go. did that seem cold? Oh well...

It really was not meant to sound that way.

here have some AVM news...

Another typical day ....

Hi Everyone!

Hoping most of you are doing well and appreciate the beautiful days we've been having! Thought I would tell you about my latest "adventure"! It started @ about 6:20 a.m. on Friday - about 5 minutes before the alarm went off... I felt my neck with my hand and felt moisture. Turned the light on and of course found that I was bleeding! Called out to Mark so he could get up and help, and he couldn't believe it! Mark said he had just checked me about 15 minutes w/the little flashlight he keeps under my pillow and I was fine!



And now some youtube...

Those are News Bloopers... no music.

I am going to quit. My job. It dosn't pay well... and I got an up stolen from me... I don't have the energy to fight it... plus the man who did it, is a friend on the new CEO... so I am F'ed.