yahoo

Wednesday, December 31, 2008

Happy New Year!


I forgot...
Thar you go...

AVM News and my cold.


Last month you will recall that my buddy Ben Munoz and I launched LivingWithTN.org. It's a site devoted to patients with Trigeminal Neuralgia (TN) helping other patients with TN. It's modeled on the community that Ben founded after his AVM aneurysm, called AVMSurvivors.org. AVM Survivors consists of over 500 folks and I'm happy to report that LivingWithTN has about 70 folks actively participating.

Given how well both networks are going and the personal satisfaction we get out of helping out on them, Ben and I decided to start another network, LivingWithAtaxia.org. We're kind of making this up as we go, but Ben and I felt confident we could handle another network because the participation at existing ones are so strong. We chose Ataxia because it's a neurological issue and a lot of people, 150,000, suffer from it. The network is off to a good start with 90 members already. The growth is mostly due to Alan Thomas, an incredibly inspirational guy, spreading the word. You can find Alan's blog here.

Anyways, I thought I would just give a quick update on our efforts. If you have ideas, suggestions or anything else you want to share, shoot me an email or check me out at LivingWithAtaxia.org. Cheers.

from...
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Mike’s brain problem (AVM)


This is the story of my experiences into the unknown and heretofore unheard of world of Arteriovenous Malformations (AVM). My name is Mike and I have one. I have also begun this blog to give personal and ongoing testimony to the fact that, as the Bible says, God causes all things to work together for good to those who love Him and are called according to His purposes (Romans 8:28). Many kind people have asked me to keep them up to date on what is happening. This is my attempt to do just that. I knew that the day of October 23, 2008 was not going to be a typical Thursday morning when I awoke to a man trying to place an oxygen mask on my face as I regained consciousness from a severe seizure.

It was 5:30 a.m. and I awoke to a room full of people and a crying wife. I was confused and could not comprehend what was going on but I knew enough to apologize to one of the Earlham First Responders for making him get out of bed at 5:00 in the morning! Dan kindly explained that I had just had a seizure and that they were there to help me.

I then sat up on the edge of the bed and I remember the words of Psalm 73:26-27 coming directly to my confused mind: “My flesh and my heart may fail, but God is the strength of my heart and my portion forever.” Nothing else made any sense to me at that moment, but that comforting promise from God’s Word calmed my soul like nothing else could have done. I am a follower of Jesus Christ. For twenty eight years I have sought to live my life in a manner pleasing to Him. I am also the pastor of Crossroad Evangelical Free Church in Earlham, Iowa, but don’t let that impress you, for I am fully aware of the great Reformation principle of simultaneously justified and yet still a sinner (simul iustus et peccator).

Though I have been cleansed by the blood of Christ through faith in His finished work on the Cross and His subsequent resurrection three days later, I am also painfully aware of the fact that I still sin against God every day in thought, word, deed, as well as in those good things left undone. Nevertheless, the grace of God to me on this surreal morning came with an unmistakable promise from God’s Word to my confused mind.

I then stood up and walked over to the dresser to put some jeans on over the boxer shorts I had worn to bed the night before. With all of the people in my bedroom it just seemed like the right thing to do. I think the medical personnel were surprised to see me hop up out of bed so quickly…from a state of apparent unconsciousness to jumping out of bed. I think it’s funny.

The medical personnel then explained that they wanted to take me to the hospital by ambulance. I put up a weak resistance because I knew that this was nothing to trifle with. So, I walked out to the front porch where the paramedics strapped me to a gurney and loaded me up. It was a rather pleasant 30 minute trip to Iowa Methodist Medical Center. Upon entering the E.R. we noticed that there was hardly anyone else in there. Good. I could receive the full attention of all the doctors.

As my mind began to clear up a bit I began to process what had happened and I reasoned that the seizure was just a fluke thing. After all, lots of people have a seizure at some point in their lives. Then began the battery of tests. The first test I was subjected to was a CT scan. My wife Karla became concerned when the test went on long past the time the techs said it would. Not long after this was completed an ER doctor entered the room to explain that I had a rather large AVM and briefly explained what it was. It was then that I was informed that I would be required to stay in the hospital for more tests.

I was extremely disappointed to have to stay overnight in the hospital. I hadn’t done that since I was five years old and had my tonsils out. For lack of space on other floors they put me on the heart floor with lots of truly sick people. I entered the room and sat on a chair next to my wife in blue jeans and a t-shirt. Minutes later a doctor entered the room and asked me if I was the brother of the patient…apparently since I was not in the bed. He did not notice the IV on my opposite arm.

I explained that I was comfortable where I was and that I didn’t see any need to get into the hospital bed. The nurse explained that patients normally lay in the beds with the hospital gowns. And here is the highlight of these two days. I politely but firmly refused to put on the ridiculous hospital gown with the wide open back door. Though I was still in somewhat of a loopy state, even Karla admits that I refused in a way that was as polite as was possible. An understanding nurse asked me if I would be ok wearing doctor’s scrubs. I said “Yes.” And that’s what I wore for two days and one night…to the amusement of doctors, surgeons, interns, and med students alike. To have even a bit of control over a difficult situation is not only comforting but it’s also a bit fun.

(Please click on the next entry Tests, More Tests, and Some Tough News if you want to find out important details about what was really going on with me).


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Me... I got a cold... and really don't have much to say. So I'll say goodnight.

Tuesday, December 30, 2008

I ain't got nothin...


So I bring you Deila...
oh stop bitchin...

and by the way... buy something!

I got one of these... I think that it's cool!

Monday, December 29, 2008

A Story, that I think is wort sharring: Final Chaper of ... My Sister, my friend Saturday

Hi Everyone!

I am finally getting around to finishing the final "chapter" of my last embolization trip to Denver in November! That was the trip Celia went w/me on and it turned out to be a week hospital stay instead of the usual over night! I've come to learn that 95% of Dr. Yakes patients get sent home the same day as their embolization - but since my avm is facial and extensive, it's best that I'm kept overnight! That week in the hospital took a lot of my time I might have been holiday shopping! To boot, I ended up having to go back into the hospital those 4 days here locally, so there went more time I could have been shopping or enjoying the holiday season! Darn! Oh well.
Here is the photo we've all been waiting for! The sister photo! My sister Celia had been trying to "edit" the photo, as she thought it was too dark.

Also, I want to include a photo of my two bears, Saba and Rulon! Saba goes with me to work every day and to all my doctors appt.s! I get so many comments on them both, so they are a nice distraction from my avm! I have fun dressing them differently - they make me happy, so I enjoy having them around!

Oh! I want to send a "shout out" to Dr. Zane, my ENT here locally! He is very supportive of avmers - I had given him Shalon's web site address once and he looked it up and had liked her site! I recently had an appt. to see him and know he was going to try and check my blog out!

Well, I am heading out to my next embolization Jan. 6,7 & 8th - and this time Mark will be coming with me! With any luck, we'll have a few minutes to spend with Shalon and her husband Josh while we are up there!

We hope everyone is having a great holiday season! I will certainly try to blog again sooner this time - as Marks birthday is New Years Eve! Catch up w/all of you soon!

Love,

Mark & Cyndi
from...
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I figured I'ld give you a break on my morbid self. Congratulations!

So what to do? hummmm.....

I know what to do.... I'll give you youtube!
just a couple...



My ex-wife would like that....

okay enough... for now oh oh oh! I forgot one... hang on.


How could I forget my Jimi!?
Ok now I say good by... but only for a moment... or two.

Sunday, December 28, 2008

One little one... and some me too...


This is the story of my experiences into the unknown and heretofore unheard of world of Arteriovenous Malformations (AVM). My name is Mike and I have one. I have also begun this blog to give personal and ongoing testimony to the fact that, as the Bible says, God causes all things to work together for good to those who love Him and are called according to His purposes (Romans 8:28). Many kind people have asked me to keep them up to date on what is happening. This is my attempt to do just that. I knew that the day of October 23, 2008 was not going to be a typical Thursday morning when I awoke to a man trying to place an oxygen mask on my face as I regained consciousness from a severe seizure.

It was 5:30 a.m. and I awoke to a room full of people and a crying wife. I was confused and could not comprehend what was going on but I knew enough to apologize to one of the Earlham First Responders for making him get out of bed at 5:00 in the morning! Dan kindly explained that I had just had a seizure and that they were there to help me.

I then sat up on the edge of the bed and I remember the words of Psalm 73:26-27 coming directly to my confused mind: “My flesh and my heart may fail, but God is the strength of my heart and my portion forever.” Nothing else made any sense to me at that moment, but that comforting promise from God’s Word calmed my soul like nothing else could have done. I am a follower of Jesus Christ. For twenty eight years I have sought to live my life in a manner pleasing to Him. I am also the pastor of Crossroad Evangelical Free Church in Earlham, Iowa, but don’t let that impress you, for I am fully aware of the great Reformation principle of simultaneously justified and yet still a sinner (simul iustus et peccator).

Though I have been cleansed by the blood of Christ through faith in His finished work on the Cross and His subsequent resurrection three days later, I am also painfully aware of the fact that I still sin against God every day in thought, word, deed, as well as in those good things left undone. Nevertheless, the grace of God to me on this surreal morning came with an unmistakable promise from God’s Word to my confused mind.

I then stood up and walked over to the dresser to put some jeans on over the boxer shorts I had worn to bed the night before. With all of the people in my bedroom it just seemed like the right thing to do. I think the medical personnel were surprised to see me hop up out of bed so quickly…from a state of apparent unconsciousness to jumping out of bed. I think it’s funny.

The medical personnel then explained that they wanted to take me to the hospital by ambulance. I put up a weak resistance because I knew that this was nothing to trifle with. So, I walked out to the front porch where the paramedics strapped me to a gurney and loaded me up. It was a rather pleasant 30 minute trip to Iowa Methodist Medical Center. Upon entering the E.R. we noticed that there was hardly anyone else in there. Good. I could receive the full attention of all the doctors.

As my mind began to clear up a bit I began to process what had happened and I reasoned that the seizure was just a fluke thing. After all, lots of people have a seizure at some point in their lives. Then began the battery of tests. The first test I was subjected to was a CT scan. My wife Karla became concerned when the test went on long past the time the techs said it would. Not long after this was completed an ER doctor entered the room to explain that I had a rather large AVM and briefly explained what it was. It was then that I was informed that I would be required to stay in the hospital for more tests.

I was extremely disappointed to have to stay overnight in the hospital. I hadn’t done that since I was five years old and had my tonsils out. For lack of space on other floors they put me on the heart floor with lots of truly sick people. I entered the room and sat on a chair next to my wife in blue jeans and a t-shirt. Minutes later a doctor entered the room and asked me if I was the brother of the patient…apparently since I was not in the bed. He did not notice the IV on my opposite arm.

I explained that I was comfortable where I was and that I didn’t see any need to get into the hospital bed. The nurse explained that patients normally lay in the beds with the hospital gowns. And here is the highlight of these two days. I politely but firmly refused to put on the ridiculous hospital gown with the wide open back door. Though I was still in somewhat of a loopy state, even Karla admits that I refused in a way that was as polite as was possible. An understanding nurse asked me if I would be ok wearing doctor’s scrubs. I said “Yes.” And that’s what I wore for two days and one night…to the amusement of doctors, surgeons, interns, and med students alike. To have even a bit of control over a difficult situation is not only comforting but it’s also a bit fun.

(Please click on the next entry Tests, More Tests, and Some Tough News if you want to find out important details about what was really going on with me).

from...

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Y'all don't know this, well may by you do know, but a section of us "people" need to write down this stuff.... hoping that somehow we'll find some new meaning to what had happened... and may be some new treatment, when we read someone's blog, or medical paper.


Someone else back me up? please...

Well it is time for me to go... looking for some miracle cure.

Peach out...

R

Saturday, December 27, 2008

AVM news, and a little me too.

James gets all-clear after haemorrhage



By Lindsey Newton
Christmas was extra special for one Thetford boy, who has been given the all-clear after a brain haemorrhage.
James Richardson, four, of St Audrey's, Thetford, suffered a brain haemorrhage the size of a plum caused by a rare condition – Arteriovenous Malformation (AVM) – in which malformed capillaries cause tangled blood vessels.

The bleed, was diagnosed on October 8 after staff at Play Days Nursery, in White Hart Street, Thetford, noticed he was feeling unwell and took him to see a GP. It took four hours of surgery at Addenbrooke's Hospital, in Cambridge, to remove.

James' mother Liz Richardson, 34, and her husband Paul, 39, praised the nursery's actions and their son's bravery.

Mrs Richardson, said: "Seeing James looking so unwell and lying in a hospital bed was unbearable and I have blocked most of it out because it was so traumatic.

"My brother died from a brain haemorrhage six years ago and even though the two conditions weren't related, it didn't stop me worrying.

"It was difficult to explain to James what was going on, but after the operation we said the doctors had taken his headaches away."

"My six-year-old daughter, Kate, found it really hard."

She said the family was grateful to Acorn House, which is run by The Sick Children's Trust, which let them stay while James was being treated, and wanted to thank everyone who had helped them.

"It has been really tough, but I am so pleased James has been given the all-clear," she added

James has recovered so well his surgeon does not want to see him for another six months.

James' grandfather Brian Fisher, 67, of Old Market Street, Thetford, said: "He was tremendously lucky and we have been looking forward to spending Christmas together."

Mrs Richardson is now planning to raise money to say thank you to Acorn House and the Paediatric Intensive Care Unit at Addenbrooke's Hospital.
from...
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Oh boy , do I have a hangover! So I'll be keeping this short....
I was victim of a party last night. I only had three drinks... but oh do I feel them now!

Friday, December 26, 2008

I love this stuff.... sorry.

December 21 2012 the END?


part 1 of 6...
December 21 2012 the END?

part 2 of 6
There are 4 more... If you want to see them go to youtube.

I got one... a great one!

Influence of MMP on Brain AVM Hemorrhage
This study is currently recruiting participants.
Verified by University of California, San Francisco, October 2008
Sponsored by: University of California, San Francisco
Information provided by: University of California, San Francisco
ClinicalTrials.gov Identifier: NCT00783523
Purpose

Brain vascular malformations, including arteriovenous malformations (AVM), cavernous malformations (CVM) and aneurysms, are a source of life-threatening risk of intracranial hemorrhage. The etiology and pathogenesis are unknown. There is no medical therapy presently available. Prevention of spontaneous intracerebral hemorrhage (ICH) is the primary reason to treat brain vascular malformations. The goal of this study is to: begin pilot studies to lay the groundwork for future clinical trials to develop medical therapy to decrease ICH risk.

Matrix metalloproteinases (MMPs) regulate the extracellular matrix in association with various hemorrhagic brain disorders. MMP-9 has been most consistently associated with vascular wall instability and hemorrhagic brain disorders. Doxycycline, a non-specific MMP inhibitor, may enhance vascular stability, thus reducing the risk of spontaneous hemorrhage in brain vascular malformations by decreasing MMP-9 activity.

more...

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I've been looking for a clinical study to join. I am so sick of not knowing what to say, when in a conversation. This one doesn't cover that, but it shows that I'm on the right track.

So did you have a good Christmas!
I hope so.
okay, I gotta go.
peace!
R

Thursday, December 25, 2008

Two, plus stuff

With Condolences...

We've spent this week thinking about our friend and fellow music critic Tim Finn over at the Kansas City Star. Our hearts went out to Tim when we heard that his wife, Lauren Chapin, restaurant reviewer for the Star, suddenly collapsed while working out at the gym on Monday from what turned out to be a ruptured aneurysm. We learned this morning that she died on Wednesday. She and Tim have two teenage daughters.

Pitch restaurant reviewer Charles Ferruzza posted a tribute to Lauren this morning on Fat City. We at the Wayward Blog send our condolences to Tim and all the Finn-Chapin clan.
From...
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Thankful!

Sometimes the Lord just stops me and reminds me of how much I have to be thankful for! That happened recently when DH read this. A Kansas City food critic died of an AVM. I am so thankful that God's grace protected me and my AVM was removed. May we all take time this season to be thankful....for so many things....for life....for a Savior....for His grace!
from...
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Merry Christmas!
Yesterday I spent the entire day in BED! It felt real good!
My youngest son is having surgery tomorrow... it is for a bad tooth. The infection he had moved into his sinus. It ain't good.
Pray for him....

Well I have to go... Merry Christmas.

Monday, December 22, 2008

News about AVM's

Dream a Little Bigger

roadwcycle

from...

Yesterday I saw open grief at a memorial service for a friend. I can’t tell you how refreshing that was.

Photographer and Kansas City Star restaurant critic Lauren Chapin had just turned 50 when she basically dropped dead at the gym. Lauren was a trim, energetic, happy wife and mother of two teenaged daughters she adored.

She was in perfect health, everyone thought. But she had a previously undiagnosed condition, an aneurysm/AVM. The first symptom proved fatal.

At Lauren’s 100-percent no-BS memorial service, I saw tears, confusion and longing. A little regret that there was no time to say goodbye, no time to at least try to express the inexpressible.

Because of the family’s generosity and the quick action of doctors, Lauren’s organs went to desperate patients somewhere. The family was grateful for this thin silver lining.

I did not see anger. I did not hear rationalization. I did not sense false optimism.

One daughter said: Mom, I thought you’d live to be 100. The other said: Mom, I thought you’d live forever. Several people said: Don’t forget to tell people you love them. Don’t forget to give your loved ones hugs and kisses every day.

A friend told how Lauren’s cell phone was constantly ringing, and how annoying the chirping-birds ringtone could get. Breaking down, she added: What I would give to hear those birds again.

Some five years ago Lauren’s husband Tim lost a younger sister to cancer despite the complete absence of risk factors. Tim’s 39-year-old sister lived just five months after her diagnosis. A story from Tim’s eloquent eulogy for his sister ended up in my blog a few months ago: I’m Too Special to Get Cancer.

A pancreatic cancer patient spoke of an invisible wall. She could see her brothers and sisters at the foot of her hospital bed. “I don’t want to be on this side of the wall,” she said. “I want to be on the other side, with all of you.”

Yesterday at Lauren’s service, the wish for some time to say goodbye was palpable. Even a few painful weeks. Our minds reject a model of illness so sudden and final. There’s supposed to be a dark cloud of symptoms, the anxiety of tests, the dread of the diagnosis and the slim hope of a second opinion.

Of course none of that would be a picnic, but it gives time. Time to hold someone’s hand in a doctor’s waiting room. Time to cry together. Time to look at old photographs. Time to tell stories and laugh. Time for final words to loved ones who will then take those words to their own graves.

We can’t accept illness as a dropping anvil, and then nothing.

And yet, she could have died in a car accident. Anyone can. So why does Lauren’s death feel so wrong, I asked a family member.

We decided it was because every day we buckle our seat belts. Every day we watch traffic. Every day we’re reminded we could be hit by a car that comes out of nowhere. But even then, we picture injury. Maybe life-threatening injury.

But we stubbornly cling to the idea of a few weeks or days—hell, even a few hours—to kiss loved ones on the forehead and say what a privilege it was to walk the earth with them.

Yesterday the irony of the moment seemed lost on noone. How could death come to someone so adventurous and embracing of the here and now? Lauren was not wealthy, but she found ways to study at Oxford during her college years and, throughout her life, travel the world.

One coworker told of a quick foray into a nearby shop of South American imports. Lauren and her friend went their separate ways in the store, but came back together holding the same pair of $149 boots. The friend, noting the high price, tried to inject some reason into the discussion, but Lauren finally ended it all with: “Life is short. We’re awesome. We deserve it.”

The grieving family did not get the chance to say goodbye to Lauren. But maybe Lauren was saying goodbye every day by the gutsy way she lived. As her sister put it, Lauren’s main legacy was: Say yes. Say yes to life.

As a proud contrarian, I’m known for my disdain of the positive-thinking dogma that’s rammed down everyone’s throat. But in Lauren’s honor, I’ll do a double backflip and be a contrarian on being a contrarian. Or at least I promise to try.

I will try to dream a little bigger. If Lauren were here, I’d bet she’d say, with a smile: I dare you.


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--------------------------------------

That's Very Sad.... but it is sad for those we leave behind. For us, it is peace.
Don't worry I am not going to off myself. But I am just saying... it is peace. Regardless of where you get your info... it's peace.

I'm looking forward to it... the peace. If it is possible I will miss a good number of you... but we'll meet again. (maybe)

okay, I am going to go... buy some Kansas you punk! or don't...

Saturday, December 20, 2008

I gots no AVM News! I though I had two.... but I was wrong


So I'll put some funny in this post!

#AVM
I can feel and hear my heartbeat in my ears? whats wrong? i can actually feel my heartbeat in my ear so much that my ears are aching! PLEASE HELP!???? WHAT IS CAUSING THIS???
Best Answer

Uhm…
Heatstroke..
Drink water and stuff to calm you down.
It'll Probably be fine.

Maybe you are getting a fever.
@@@@@@@
jamie said,

December 19, 2008 @ 7:55 am

Sounds like you may have an ear infection if this is a new development. The ability to hear your pulse is referred to as vascular tinnitus. Tinnitus means rining, and vascular refers to you circulatory system. Here is an article I found on YourTotalHealth.ivillage.com."Question :What causes the sound of your pulse to be heard in your ears?P.L.Answer :This is known as "pulsating" or "vascular" tinnitus. (Tinnitus generally means ringing or roaring in the ears.) Here is a list of the possible causes of pulsating tinnitus: 1. Chronic inflammation or infection of the middle ear. Chronic inflammation in any part of the body is almost always accompanied by increased blood flow to the inflamed tissue. When this tissue is in the ear, some people are able to hear the increase in blood flow. 2. Eustachian-tube dysfunction. The eustachian tubes connect the middle ears to the upper throat. They open to ventilate the middle ears and equalize internal and external air pressure. For reasons that are unclear, inability of the tubes to open properly can sometimes result in pulsating tinnitus. 3. Middle-ear effusion (fluid). The middle ear is normally an air-filled space. If fluid accumulates behind the eardrum (due to infection, inflammation or eustachian-tube dysfunction), pulsating tinnitus may result. That symptom would be accompanied by decreased hearing, a sensation of pressure in the ear and in some cases, pain. It can be treated with medication (antibiotics, decongestants, nasal steroid sprays and so forth) or surgery. 4. Vascular tumors. Such tumors in the middle ear go by a variety of names, but are most commonly referred to as "glomus" tumors or "paragangliomas." They are benign (not cancerous), but due to their location and vigorous blood supply, they can be very troublesome. Treatment requires surgery. 5. Arteriovenous malformations (AVMs). AVMs are abnormal collections of arteries and veins. They sometimes occur within the cranial cavity near the auditory nerve. An AVM pulsating against the auditory nerve stimulates the nerve, resulting in a pulsating tinnitus. AVMs can occur as a result of trauma or due to abnormal development in the womb. For example, a person may be born with a small AVM that enlarges later in life. Treatment is usually surgical. 6. Carotid artery-cavernous sinus fistula. A fistula is an abnormal connection. Thus, carotid artery-cavernous sinus fistula is an abnormal connection between a very large artery and a very large "lake" of venous blood (not really a "sinus" in the sense of facial sinuses) within the cranial cavity. It is usually the result of severe head trauma. The fistula can be treated by a specialist in the field of interventional radiology. 7. Venous hum. Patients who are pregnant, are anemic or have thyroid problems may develop increased blood flow through the largest vein in the neck, the jugular vein. The jugular vein carries blood from the brain back to the heart. In so doing, it traverses the middle ear. Turbulent blood flow anywhere in the course of the jugular vein can be heard in the middle ear as a "hum" which may or may not fluctuate with the pulse. Correction or resolution of the underlying problem often results in improvement.There are other, less common, causes of vascular tinnitus, but these are the "biggies." I recommend that you see an ear, nose and throat specialist for a comprehensive evaluation, because (as you can see from this list) many of the possible explanations are NOT trivial!"
==================
Okay I found one... a very small one, but hay I found one.

The video at the begning of the post, was on a fellow blogger's site... go visit him here!

And you know what is next?
That's right.... youtube!


Genesis: I can't dance
good , well I think so...



I had to...
Go buy something....

Friday, December 19, 2008

I was looking thru youtube and I had to do it...

Sorry guys, i had to...


It is just wonderful...

I had to...

My day: Pretty much boring. We got about 12" of snow. It is a good thing I worked yesterday. (Even if I did not sell a thing.)

I am going to find another video... sorry guys.


Okay that is enough... for now...

Thanks Wally!

Bush Shoe-Throwing Animated Gif

This has got to be the best Bush Iraq shoe-throwing animated gif


He's got a lot of new stuff... give him a look... click here


I got no avm news... HORAY!

Work yesterday; nothing to report... and I mean nothing! Not a person walked in... much less signed the BOOK.


I don't know what is going to happen with the Corporation buying the store. It could be good for me... it could be bad! Ahh well I am a part timer, I guess it will be what it is.


Enjoy Welcome To Wally World... tell him I sent you... please.

here buy some stuff...




I have read these, and all I can say is WOW!
Hey I got it, I'll start reading them again, hopefully I will get my ability to read back. (Another AVM side effect)

Oh ya' M. Weis is one heck of a person, she befriend me years ago. She really is a great person.
Good nite,
r

Thursday, December 18, 2008

No news today... well nothing avm anyway.

I am going to work, I spent last Tuesday working. I had an up... and a walked him out the door. (and I though I had him.)

He's going to come back someday.... really he will.... ya! Sure he will.... and to top it all... I did not have him sigh the book, you know THE BOOK! I f'ed it up... and he walked.

Oh well I will try harder... I promise.
here buy something.... or go look at them.


The gift card is for thos like me, that don't have a clue!

Wednesday, December 17, 2008

A little AVM news!

It sounded crazy to Sophia Smith’s parents that doctors would use an adhesive similar to Krazy Glue to plug the tiny holes in her brain, but in essence that’s just what they did.

“I was like, ‘Krazy Glue?’” Sophia’s mother Rebecca Raezer said just a few days before Sophia’s life-saving surgery. “I thought they were just calling it glue for me, but it is a permanent fix. I found it hard to believe.”

Sophia, who is 3 months old, has vein of Galen malformation, or arteriovenous malformation (AVM). The large, deep vein at the base of her brain lacks capillaries, so her blood flows much too quickly from the arteries to the vein, which becomes overwhelmed by the intense bloodflow.

On Dec. 4, Dr. Alejandro Berenstein, director of the Hyman-Newman Institute for Neurology and Neurosurgery at St. Luke’s-Roosevelt Hospital in New York City, performed an embolization: He inserted a hollow tube containing the medical glue, or N-butyl-cyanoacrylate Trufill, through Sophia’s groin and fired bursts of it into the holes of the arteries.

from...

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---------------------------------

Oh boy... have I got to get up... I've been sleeping ...all day long.
And tomorrow I have to work.

I have been called in... god I hope I sell something.

Yes, I have an AVM... it is a rather large one. It takes up most of my left side (of brain).
It has taken my ability to move my right side. And I use to be right handed.

I have to go... fight about to break out.
FFFFFFFFFFF!
R

Tuesday, December 16, 2008

Monday, December 15, 2008

One... Plus Duke L. post.

Jake's Surgery


Thursday night, Jake didn't get much sleep. He was very anxious for the coming day's activities. Michael stayed up with him until he was ready to sleep...around 12:30 am.

Friday morning came quickly. The family was up and around at 5:45, and since Jake wasn't able to eat anything, he was VERY hungry! We left for the hospital around 6:30ish, dropped Chris off at our neighbors house (thanks Fosters!), and started the half hour drive. All the while, Jake was dealing with an empty stomach and nerves. His tummy wasn't very comfortable.

We got to the hospital just in time to see the sunrise and for his procedure to get underway. We were greeted
by a less than friendly receptionist, and were escorted to a room with 5 full beds. The curtain around Jake's bed was pulled closed so he could put on his hospital gown. After he got his gown on, we had to meet with the anesthesiologists and sign consent forms.

They then wheeled Jake back to the
operation room, and Michael went with him until he fell asleep. Jake took a few minutes to fall asleep, and then he was off to surgery.

The surgery was supposed to last 3-4 hours, so Michael, Mom (Grandma Deeter), and myself went down to the cafeteria to grab some yummy (ick) hospital breakfast. We were given a pager, so they could contact us if needed. We spent a couple hours in the cafeteria, and around the 3 hour mark, I headed back upstairs to the waiting room in hopes that he'd be done soon. An hour went by, and no word, and another half hour went by, and Michael and Mom came up to see if there was any word. Nothing yet. Michael asked the receptionist if she knew anything, and she made a phone call. A few minutes later, a nurse came out to tell us that they were just finishing up, and he'd be done in about 20-30 minutes.

About a half hour went by, and one of Jake's doctors came out to talk to us. He greeted us with a "Good news, bad news" info. He informed us that they were able to get a lot of work done on Jake, and were able to block 75% of the blood flow to his AVM. The bad news of that is they found that instead of just one artery feeding the AVM, he actually has 3 of the 6 arteries in his head feeding the AVM. Since the condition was 3 times worse than they were expecting, the surgery took longer than expected (it lasted a total of 5 hrs). This would also require an additional 1 or 2 surgeries to correct, and there was a chance that his birthmark might actually get bigger in the coming weeks. (very disappointing to find out!) He told us that Jake was going to be taken upstairs to the "Post Anesthesia Recovery" area, and we can meet them up there.

We all got in the elevator, and went up the 2 floors to the recovery area. They called us in, and we were taken into the Pediatric Post Anesthesia Recovery Room. It took Jake about a full hour to be released to his room. During that hour, he intermittently said things and tried to sit up. Unfortunately, because of his procedure, he was required to lay flat for 6 hours. When he first started to wake up (before Michael and I were in the room) he sat straight up. The nurse told us that "he's surprisingly strong!" She said it took 3 nurses to lay him back down, and another nurse to hold his leg straight. The first thing he said when he woke up, was to tell the nurse that his birthmark hurt, and his throat hurt (he had a breathing tube during the surgery). About a half hour later, he was starting to be a little more lucid, and I made a comment about how big his hands are getting, he said "I'm a tough guy". Once Jake was able to answer a few questions about what his name and birthday is, and what month we're in, they moved him down to the 2nd floor to the pediatric unit.

Once in his room, Mom and I went to grab some food at Subway to bring back to eat. (It was 3:00 by that time, and the last we had eaten was 8:00 that morning). Jake slept most of the day, which was actually a blessing for him. Since he had to lay flat, being asleep helped. The few times he woke up, he was pretty groggy and went back to sleep quickly. Mom went home to spend the afternoon/evening with Christopher around 4:00, and Michael and I hung out in Jake's room for a bit, watching him sleep. Around 5:30 or so, Jake's doctors came in to talk to us about the procedure. Thankfully, this second talk with the doctor was filled with a lot more information, and was a lot more encouraging.

He said that they were able to get 75% of the blood flow blocked, which was a lot considering that it was being fed by 3 arteries. He said that the AVM will swell a bit for a week, but after that, we shouldn't be too surprised to see some shrinkage occur (yay!) and there should be a lot less bleeding (double yay!). He said that after the first of the year, he'll have to do another embolization angiogram, but at the same time they'll also attack it from the outside doing the direct puncture procedure. He's very confident that this upcoming surgery will be the final one. Since they've already taken care of 75% of the problem, this next one will be a lot less to deal with. Jake will still have to lay flat for 6 hours following the procedure, but he won't be under anesthesia as long, so hopefully he won't be out of it as long following the procedure. He also said that they would have gone longer and tried to attack the AVM more during this surgery, but 5 hours exposure to x-rays and contrast material was all that Jake would be able to handle without getting sick. Another bit of unfortunate news was that the doctor wouldn't clear Jake for skiing this month, so we're having to postpone our trip to Denver to go skiing.

Jake was still pretty out of it when the doctors came in to talk to us, so he didn't get to hear a lot of what was said. He was in and out of sleep most of the evening. He'd wake up enough to tell us that he wanted some water or ice chips, and wanted to watch a movie. We'd get the laptop out and ready to play a movie, turn around to ask Jake a question, and he'd be asleep. He finally woke up fully around 6:30...a half hour before he was able to sit up and move his leg. The nurse was nice enough to raise the bed a little for him, and help him flex his ankles periodically, so that when he was able to move, it would be a shock to his system. He was able to keep down a few bites of apple slices, and a few spoonfuls of spaghetti-o's. The nurse gave him some medicine to help with his nausea, and by then Jake was able to move about (slowly) and keep more food down. Grandpa & Grandma Thornton and Great-Grandma Jensen came to visit him shortly after, and he still wasn't 100%, so he wasn't feeling up to chatting for too long. After Grandpa & Grandma left, he slept a bit, woke up a bit, and slept a bit more. He finally rolled over to his side to call it a night around 10:00.

Michael and I stayed with him that night, and endured the most uncomfortable night of sleep we've had in a long time. I slept on a chair that folded out into a VERY SMALL bed, and Michael slept in a recliner (not a lay-z-boy by any stretch of the imagination). Jake was being monitored throughout the night, so we were greeted with bright lights periodically through the night. Around 6:30 Saturday morning, Jake said he had to use the bathroom, so Michael helped him with his IV pump into the bathroom. We were up for the day at that point.

Jake was still somewhat groggy, but he was a little hungry, which I saw as a good sign! He had half of a pancake for breakfast, but that was a bit much for his tummy to handle. Michael made him some toast, and he downed that pretty quickly. It was just right! We all waited around the room, waiting for the doctor to come and give us the okay to go home. The doctor came in around 10:00 and talked to us a bit more, telling us what to expect during his recovery. We got our discharge papers around 10:30, and headed home. Jake was still a bit out of it Saturday, spending most of his time in bed. He got up periodically, and walked around the house some, but most of the afternoon was spent in his bedroom. He wanted soup for dinner, and that seemed to be just what he needed. After dinner, he was a lot more himself. He was able to be downstairs in the family room and we all watched a movie together.

Today, Jake is even better. He's gone 48 hrs without his birthmark bleeding (WOW!!!), and he's joking and being silly with his brother. We went out to eat lunch today at his favorite restaurant, and he had a really great time! It's still up in the air whether he'll go to school tomorrow or not, but it's nice to see him getting back to being himself. My parents brought him a sketch pad and pencils while he was at the hospital, and he's just now getting to be himself enough to pull those out and start using them - that's a great sign that he's slowly getting back to normal.

We'll find out in the coming weeks when his next surgery will be. He has mixed feelings about having to go through this again. He's looking forward to being done, but not looking forward to the recovery, and especially the having to lay flat for 6 hours! His birthmark is still quite painful for him, and we're told it will be that way for about a week.

Thanks to everyone for the prayers! We really appreciate them. Please continue to pray, as he's not out of this yet. Once again, I'm amazed at how he's handling the situation. What an awesome gift he is to this family, he's taught us so much! I'm excited to see how God's going to use him further! :)
from...
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Go get them... Jake!

It's funny, I could have like him, youthful, when I got treatment.
The first time, I had my headache I was 19!
I don't know that it was caused by my AVM but it should did feel that way.
That explains my depression kina...

I hope Jake does not suffer that.

Okay, it is tie to wright some Duke Lacrosse ... on another blog.
(It is adult... if you get my drift)
Peace,
R

Saturday, December 13, 2008

Eric Clapton...


Tears in Heaven...

Layla (live)


Cocaine


Stairway To Heaven Eric Clapton, Jeff Beck,

I apologize if you do not have a fast connection. It really is the best way to view.
But even if you don't... I think they are worth it....

I've got something to say... but I don't know if this is the right spot.
Maybe I'll try the other one?
Well, goodnight,
R

And that's that!

A sad, sad Day....

Lauren Chapin, RIP

For a couple of years there, the most common sight I had of Lauren Chapin, our newspaper's restaurant critic since 2000, was of her head and hand. The one in the photo, I think. They would appear in the doorway of my office long enough for her to pull the door shut. I was, at the time, the second-loudest employee in the features department (with the departure of Hearne Christopher, I can now claim that dubious honor, I guess), and Lauren had the misfortune of being stationed just outside my office.

I had a terrible flashback to that on Tuesday as I was trying to conduct a phone interview. From outside my office I suddenly heard a loud and awful noise, the sound of uncontrollable and unapologetic sobbing. It was my officemate, Lisa Gutierrez, who -- I knew instantly -- had just received some very bad news about Lauren. As everyone on my floor knew, Lauren had been lying in a coma in St. Luke's Hospital after collapsing the day before from an aneurysm wrapped in something known as AVM. I'll admit at times like this, I actually wish I were more in touch with my feelings, like Lisa is. I would've clicked the phone shut and worried about my interview later. Instead, I shut the door.

I came out to find my department in the throes of grief. Two long days passed. Finally, this morning, I read the inevitable news about Lauren's death in today's paper.

And then, I went back and read some of her clips to reconnect one last time with that voice that had spoken so forcefully and beautifully about food (I've reprinted three of them below) ... and that's when the emotions percolated up for me.

A few years ago at a holiday party, we had a long conversation about her childhood, growing up rural like my wife, and the circuitous route she took to daily journalism. Lauren was in her mid-40s when The Star offered her the restaurant assignment, by which time she'd had the opportunity to see the world, see two daughters through their first years and pursue a creative career. All of which, I think, prepared her marvelously for rating the handiwork of culinary artisans, managing childish restaurateurs, and thinking about what few of us ever stop to think about, which is how that concoction on our plate got there.

Along with Jill Silva, our food editor, Lauren turned the Star into one of the nation's foremost advocates of local produce and one of the top food sections anywhere. She published annual guides to community-supported agriculture co-ops that readers could join, and long before it was fashionable was an ardent supporter of whole foods that didn't take a quart of oil to make it to your tabletop.

Lauren was also unusual among well-educated urban critics of cuisine in that she kept, right up to the end, one boot firmly planted in the world she inhabited and formed her most visceral food memories. Often she would take a humdrum piece about seasonal food and, by introducing it with something from her memory bank, would make it special. Like this story about grapes from September 10, 2008. (Warning: Have a Kleenex ready.)

A lot of what I know about driving on gravel, I learned from Arthur.

He was a cousin of sorts, a few times removed, who lived down the road, over the Doherty bridge, past Bean Lake and the Johnson farm (also cousins of some degree) and a few hundred yards before Dinger and Lidia's house (and yes, they were relatives, too). He was a fixture of my childhood, one of a handful of elderly kin who inhabited my world.

You see, Arthur Johnson drove down the middle of the road in his blue, four-door American-made tank of a car, oblivious to any sense of danger to or from oncoming traffic or right lane-left lane regulations. And I learned, mostly by heart-stomping, fish-tailing encounters, to always assume he was coming straight at me from around any blind bend in the road.

Sometimes, if the roads were dry enough and the winds high enough, you could see his trail, dust rising from his back tires like a rolling mushroom cloud. Most times, any of us on the road hugged the far side, careful to maneuver the left tires on the high, loosey-goosey hump of gravel heaped in the center.

Too far to the right and you might end up in the ditch, pulled into a quagmire of loose, tire-sucking dirt. Thanks to Arthur, I learned to be prepared for who - or what - may be just beyond my eyesight.

He was a widower who lost his wife long before I was born and a gardener with a trellised row of Concord grapes - juicy, seeded jelly grapes with thick, dusky skins and squishy, opalescent centers.

One smoldering September day he delivered a bushel basket of those grapes to my mother. She, in turn, transformed the tart fruit into jelly, enough to slather on toast and sandwiches to feed her four children for a year.

I doubt any of us helped with the jelly-making process - squishing the grapes in the colander; measuring out sugar and pectin and boiling the sugared juice until the liquid began to set; ladling the hot, purple goo into sterilized glasses; and processing them in a hot water bath.

I still drive those gravel roads as if Arthur were just around the bend, even though he passed two decades ago. And now I'm the one making grape jelly for children who are as oblivious as I was that some of the life lessons come from just around the bend.

Like any good critic, Lauren was no snob and thoroughly embraced the down-home fare Kansas City is justly celebrated for. (Like me, she preferred Oklahoma Joe's pulled pork.) On August 7 she wrote:

In my book, a diner isn't a diner unless it does real corned beef hash.

Chunks of house-cured corned beef mixed up with bits of potatoes and spices and griddled until the outsides are blissfully browned and crunchy.

Add a couple of eggs, a side of toast or a biscuit, and if you're on the East Coast, maybe a spoonful of baked beans. The eatin' doesn't get much better than that.

Sadly, most of the stuff that passes for hash is pablum - pre-fab, canned stuff not fit to be called hash.

Thank heavens for Ira Auerbach and Jan Imber, owners of Mama's 39th St. Diner. The honest-to-goodness, made-from-scratch hash ($8.99) has made Auerbach, a gravelly voiced Jersey native, a homegrown Food Network star.

Hosted by Guy Fieri, "Diners, Drive-Ins and Dives" spent 17 hours filming at Mama's, including the labor-intensive brine-to-griddle process for making the hash.

Auerbach brines a brisket overnight in a spiced salt-water bath, then cooks it over low heat for four hours. For the hash, the staff chops up the corned beef and adds finely diced cooked potatoes and some secret ingredients.

Each order is griddled on the flat top until the surfaces are blissfully browned and crunchy.

But as someone who mainly eats at home (though I do love breakfast at Mama's, and now I know why), I was struck most by Lauren's writing about the pleasures of the edibles in her garden. The genre of writing about food is not one that can be done long-term unless it's infused with passion. People's careers often hang in the balance of what you write; snark, the web's commodity, is simply an inappropriate response. Fortunately, Lauren had deep reserves of passion about food, I think because she had such a hands-on relationship with it in its pre-ingredient stage. October 2007:

My favorite garden spider, leggy, black and yellow, is missing.

The web she'd strung from tomato plant to ironweed to tomatillo and back to tomato plant is asymmetrical and misshapen, evidence that the spider, a fastidious housekeeper, is gone. And the grasshoppers, which all summer chewed and clawed their way through my beans and beets, are silent.

Fall has barely arrived, and I've pulled out most of the straggly, heat-loving crops of summer - the peppers, the eggplants and the beans. But my tomatoes, droopy and wizened from the drought, are still in place. A few green tomatoes, small and hard but edible, are still on the vine, and until I pick the vines clean and the killing frost comes, I can't bear to pull them from their beds.

I like this time in the garden - the quiet, the coolness in the soil, the musky smell of decay, the promise of a respite from the weeding and hoeing and harvest ing. Those green tomatoes are the last thing I'll pick until spring's greens.

Several of Lauren's organs were donated. I don't know what organs they are (besides her heart), nor do I want to. But the thought that any body part that was involved in the sensual intercourse of seeing, smelling and tasting the food of life -- the thought that these parts of Lauren are now in someone else, infusing their broken bodies with that same pleasure, is tremendously comforting.
from...
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Restaurant critic Lauren Chapin dies


Lauren Chapin, The Star’s restaurant critic for the last eight years, died Wednesday at St. Luke’s Hospital in Kansas City.

Chapin, who recently turned 50, collapsed while working out on Monday and had been at St. Luke’s since then. Her death was caused by a ruptured aneurysm that developed within an AVM, or arteriovenous malformation, at the base of her brain, family members said.

Brain AVMs, a tangle of abnormal blood vessels, are rare and usually congenital.

Chapin lived in Liberty with her husband, Timothy Finn, The Star’s pop music critic, and their two daughters, Brenna, 16, and Maren, 14.

Chapin’s restaurant columns have appeared in the newspaper’s weekly Preview section and articles and other features ran frequently in the weekly Food section, now FYI/Food.

In 2005, Chapin was a finalist for the James Beard Foundation award for best newspaper columns, the Oscar of food journalism.

“This is a profoundly sad and difficult day at The Star,” the newspaper’s editor, Mike Fannin, said Thursday. “We will miss her talents and surely her amazing spirit. We have lost one of our bright lights. And now, our prayers are with the family.”

Chapin was widely respected in the local food community, and news of her hospitalization and death spread quickly among chefs, restaurant operators and wine purveyors.

In an essay in 2002, Chapin described the “food epiphany” she experienced at the age of 11. She spent the day in the mud pulling potatoes with her siblings, parents and grandparents at the farm in Rushville, Mo., north of Weston, that had been in her family since 1887.

“I made my first deep connection between food and family,” she wrote. “It kindled my passion for food and all its cultural symbolism. It’s what led me to this coveted job as restaurant critic.”

Chapin was the oldest of Loren “Corky” and Rosamond Chapin’s four children. Her brother, John Chapin, of Rushville, and two sisters, Kristan Easter-Brown of Kearney and Robyn Cado of Kansas City, survive, as do her parents, who still live on the farm.

Her father’s job as a mechanic with TWA gave her and her siblings a ticket to see the world. Chapin, who graduated from the University of Missouri, visited China and Japan and one winter break during college back-packed across Europe.

In her journeys she formed a global outlook and well-earned experience in ethnic cuisines of the world.

“Food is about more than sustenance,” she wrote in that essay six years ago. “It is about culture and customs, all those things I learned traveling as I did.”

She often wrote of her travels in her reviews, as when she recalled falling in love with Baileys Irish Cream while studying one year at Oxford University. “One sip of that sweet, smoky, creamy, chocolaty aperitif, and I didn’t feel the English chill anymore. Another sip and I was smitten.”

Finn said his wife was an adventurer: “She just had a real lust for new things and new places and new friends.”

She earned a master’s degree in writing, publishing and literature at Emerson College in Boston, where she also gained practical restaurant-world experience.

Starting in the late 1980s she worked as a freelance photographer. She taught photography at William Jewell College in the mid-1990s and for about 10 years she worked as a freelance photographer alongside The Star’s society editor, Laura Hockaday.

Join the discussion

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Hospitalized yet again!

Friday, December 12, 2008


Hi Everyone!

Thanks for tuning in! I need all of you so much and appreciate your love, prayers and support - that gives me the strength to go on! I'm thinking of you especially David Miller! Lets see ... where did this latest adventure start ..., Oh yeah, last week I was having a hard time keeping my pain level under control. I knew I needed to get in to see the doctor, and the soonest I was given an appt. was the following Tuesday with Tammy, Dr. Boyntons Phys. Asst. Tammy is great and she loves seeing my little Saba when I have an appt. Come Monday I was desperate to get in to see the doctor and called the office and was lucky Dr. Boynton had a work in that morning. I didn't know whether the small amount of puffiness under my left eye and the pain in my ear area (that little "flap" above the earlobe was soooo tender - ouch!!!) was being caused by a stubborn infection that wouldn't go away or what! All I knew was I needed help and relief immediately! Dr. Boynton gave me a choice of starting w/oral antibiotics or admitting me to the hospital and getting IV antibiotics which of course would be the quickest way to get things going! Mom had come with me to this appt. and I had my two bears, Saba and Rulon and I have to say say that Tammy stopped by the exam room I was in just to see Saba and she had not met Rulon yet! Most of the doctors staff commented on my darling furry kids! Anyway, back to my story! Mom and I had lunch and I went home, took a shower and packed a bag and headed to Dr.'s Regional to be admitted. Mom had gone home to get her crocheting and stayed with me until Mark was able to get to the hospital after work. So of course the fun began with IV's and blood work - the nurses and lab tech were good - just one try with no problems! Mark stayed w/me very late and finally went home. I was sleeping when I felt something on my neck and I could not believe I was having a bleed! I had not had a bleed since being back from Denver! I immediately pushed the call button for the nurse that got to me right away and I know the amount of blood she saw must have freaked her out. In seconds my entire nightgown was covered in blood and I kept telling her I needed a mirror to pull the dressing off so I could see where the blood was coming from and put pressure right on the area. The nurse called for help and I called Mark - we live a few blocks from the hospital so he was there right away! The nurse kept putting pressure on the area with a towel and that was almost getting that blood in my eye! I finally got the nurses to listen to me and get the mirror I had in my wound care bag. I removed the dressing and a big flow of blood was coming from the top part of the wound. Usually when I have a "bleed" the arterial flow is a thin stream of blood, like the size of the end of a pin. This time it was a thick flow and we know that area had some puss (probably due to the infection, and the area was painful) so since it was a weak spot .... therefore the bleed. Anyway - I held pressure on my face w/a towel until Mark got there and got everything under control. I know the nurses were looking out for my best interest, but one nurse said she wanted Mark to spend the night and move me to ICU where I could be watched better. Well, unfortunately of course, if I'm in ICU there is no where that Mark could sleep - so instead it was decided that I would stay in my room and a nurse was called in to sit next to the bed and watch me all night to make sure I didn't bleed again! By the time all that happened, it was already almost 2am and we all agreed Mark just needed to go home. I know I woke up about 3am and was talking to the nurse (it was a nice male nurse) and I slept some. Every morning Dr. Boynton would check in on me and I kept asking whether the blood test were showing an infection and it just seemed I never really got a definite answer! Mom stayed with me all day and she kept telling me to just rest, I kept yawning and my eyes were tearing from needing sleep, but I kept figeting and felt like crawling out of my skin! The nurse finally had to give me some Xanex, and one dose didn't help - a few hours later she gave me more and I finally slept some. It was decided that after that major bleed (the only one worse has been the one I had in San Antonio over the summer) I needed a transfusion again - 2 units. Of course that meant another IV in the other hand!

I thought of you again David, and how you eased my fear of having my first transfusion! All along this time, I had to keep asking for pain medication because it was just not being controlled! When I was in Colorado during that week I was @ Swedish, I had asked Justin (male nurse) how he was keeping me pain free so I could follow a similar schedule. He was nice enough to write it out completely, along w/drawing a chart and all. I gave a copy of that to the nurse here ... but oh well. The nurses were very nice and I know I'm just a rare case that baffles most medical staff.

Speaking of medical staff, I would periodically call up to CO to ask questions and seek help/answers! Dr. Yakes nurse Julie called and was very sorry to hear I was having a set back. I asked her if this would ever really, really be over for me one day, because I was just not believing it @ this time! I wanted to know whether she felt Dr. Yakes would be able to completely get rid of this AVM! She assured me that Dr. Yakes would be able to help and that he was very pleased with my progress ... and are you ready for this?!? Julie went on to say, that Dr. Yakes felt we were 8O% done! WOW! Now I'm not going to hold him to it - but just hearing a ball park figure of where we're at was wonderful to hear!!! Course once Dr. Yakes is done w/me, then Dr. Snively (Plastic Surgeon) will do his part and I have no idea how many reconstructive surgeries I'll need with him! Going back to Julie though - she felt I should not have had that embolization while I was in CO since I had already gone through so much w/the infection.

Then Rhonda (Dr. Yakes Phy. Asst.) called and we talked about all I had been going through. She felt like I did need to have that embolization, even after having the infection, because it's very important that we keep ahead of this avm and not let it get ahead of us! In all reality, Dr. Yakes would like to see me every 4 weeks (Shalon goes once a month!), but I'm doing good to get there every six weeks because that is when that darned avm reminds me, "I'm Here"! Rhonda agreed that since I was on steroids most of the time I was in the hospital this past time - the combination of the steroids and antibiotics is probably what I needed now. So, she was concerned about stepping on Dr. Boynton's toes, but I assured her he is a fantastic person and I felt he just wanted whatever is best for his patient! When Dr. Boynton wrote the prescription for the steroids, he gave me 10 mg. but I need the wompa steroids @ 20 mgs! Rhonda had already told me she would not be available the next day due to a class or something she needed to take, but she would have Eric, Dr. Yakes other Phy. Asst. call me. Eric is super nice and he did call and he too was concerned about overstepping on Dr. Boynton, but I assured him I felt Dr. Boynton would appreciate their input. Eric ended up calling in the steroids I needed. Dr. Boynton wanted to keep me one more day, but I pleaded to be able to go home! I had already been on the required 3 days of IV antibiotics, so knowing I had steroids too - I was anxious to have IV's and needles out of my arms!!! The lab tech came to take blood @ least 4 times if not more! I kept telling them it's no wonder I need a transfusion, y'all keep taking more of my blood!

Oh! I almost forgot! Wed. after work, Mark had gone to HEB grocery store to get a couple things I had asked for and ran into our friend Pauline Foegelle! She said we had been on her mind and Mark filled her in on where I was. She had invited Mark over for dinner, but Mark thanked her and told Pauline that most of his time was spent w/me in the hospital. When she got home, she told her husband Keith about running into Mark and he too said we had been on his mind. Keith calls me @ the hospital and asked if it was ok to come by and bring us dinner! Wow! Talk about nice! It was a cold night out and I kept telling them it wasn't necessary - but they wouldn't take no for an answer and we are so glad too! It was great seeing them and hearing about how their daughter Mary is doing! I always know how old she is, because she is in our wedding video in a baby carrier a few months old! So, on December 19th we celebrate 16 years of marriage and I want to say Marys birthday is in August or September when she turned 16! Not only did they bring dinner, but cookies, candy and the cutest little stuffed dog in a Santa Suit that plays (or barks) "We Wish You a Merry Christmas"! They really cheered us up just chatting about what all everyone had been doing lately!

Markie Poo Hoo came by to see me - brought a pretty arrangement of carnations in a Christmas sleigh! I told him his hug and kiss was the best medicine ever! He's a doll and right now he is having his own surgery for a deviated septum. Poor kid, can't breathe through his nose! Davis is on his way home from College Station today, so some time this weekend I hope to see both of them! Mom wouldn't let me go to see Markie before surgery since I just got out of the hospital myself.

Celia & Gregs friends The Satoris sent a vase of white carnations with pine and fir. Mom brought me a beautiful and fragrant red rose from her garden, and Greg just stopped by with some goodies for me from the girls @ the office! I got some chocolates and munchies and Saba got 2 outfits and Rulon got one too! Mom & Vicente's friends came by while I was in the hospital, Pam and Gene - Jim knows Gene! Also Helen and Joe Lee also came by with a lovely get well card for me - they are dear friends of the Morins that all spend time playing Mexican Train and just enjoying each others company! Mom Schuman called this afternoon to see how I was doing - that was so sweet! They were heading out to Dianes to see her son Matthews girlfriend graduate from college! I told Mom Schuman maybe she could send a photo or two our way from the event and she was glad I reminded her to take the camera!

So I was finally sprung from Dr.'s Regional by 4pm Thursday - yesterday! Once I got home, I waited for Mark to get home from work - poor guy, he had to go 2 different places to pick up prescriptions, plus the medical supply place I get my wound care supplies since we needed some Tegaderm! I took a shower once he was home and put on some comfy jammies while Mark made a big pot of chili and cornbread to go with it! Unfortunately I couldn't eat too much of it - I have some discomfort on the inside left part of my mouth that hurts with that chili sauce. Darn! Luckily chili freezes well! Both Mom and Celia had brought me good books to read, so last night I felt like I was in heaven ... sleeping in our wonderfully comfortable bed w/my husband next to me, something good to read and NO IV's ANYWHERE! Whew! Am I long winded or what? Well I want y'all to feel like you are right there with me and I love to write! You know before getting that transfusion, I was just dragging and telling Mom that I didn't know how much more I could take! I know when most of you see me I'm upbeat, but I do have my down times and this last hospital visit was definitely one of those times I just felt like it was too hard to be cheerful! That's the reason you won't see but probably one photo (Mark only took 2) and he hasn't had time to download them on to the computer from the camera!

So there's my story folks! I'm feeling better - still not sure why my eye was puffy - I know the avm is blocking my inner ear where maybe the puffiness is coming from fluid build up - even though I have a t-tube in my ear to help w/drainage. I don't know - I just want to be able to keep my pain under control and not have a bleed!!! I really think that bleed was just due to that area being too moist and that avm has a mind of it's own! I do know how blessed I am that not only do I have my immediate family here in town doing all they can for me, but also my brother-in-law Jim has been very supportive and concerned. My in-laws Doris and George have been praying, along with Schumans and friends up in Ohio and Indiana and all over the U.S.! Lots of Fossums (my brother-in-law Greg) are also very concerned, his brothers Mike and Terry and their mom, Pat and some of his family in South Dakota! My moms family in Oregon and Washington and of course all our wonderful friends here! If it weren't for all of you and our faith to give us strength - Mark and I could not do this on our own! We need all your prayers and the combination of medical teams here and in Colorado! Let's look forward to the end of this avm business, ok? Oh! As always - if you have a moment, please keep up with my new BFF Shalon! She has so much interesting information on other AVM-ers, plus all her own adventures! You can get to her web site from mine, or go to http://sites.google.com/site/shalonsavm/Home - you can read about all her trips to CO and she puts great medical information on there! Plus, as an added bonus - you must visit her new blog site - that is where she has information on other people that have avms and Shalon just always has cute stuff on herself on there. She, like me, also has an amazing husband that is extremely supportive and loves her so much! Joshua is super nice! You know one of the nurses was telling me that Mark looked so tired when he came in one day and they asked him if he wasn't getting enough rest. He responded with, "I can't sleep alone without my wife"! That's why I wanted Dr. Boynton to release me and not keep me that extra day - I needed to get home to my wonderful husband that I missed so much! Ok! I've gone on long enough! Thank you everyone! We love you all!

Mark and Cyndi Schuman

I'll try and post a photo later tonight!
from...
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It is a sad day...
We lost one to an AVM....
Lauren Chapin she will be missed.
I have had a bad as well... I would get into it.... but I don't want to boar you....
Leave me a comment and I may tell you.... maby.
Peace,
Rob