Thursday, September 27, 2007

The Mother Ship Is Calling

Feeling much like the mother ship is calling me and I am resisting ~ vertigo has taken a hold of me this week and it won't loosen it's grip! If I didn't know for sure what was causing me to feel this way I would think that I was loosing my grip on reality!

I feel dizzy ~ lightheaded ~ it feels as if I am literally floating above my body! The fun thing about it is that the only thing I can do is slog through until it subsides.

Wednesday, September 26, 2007

Brain Tail Discovery Day

Today marks the one year anniversary of the date that I had my very first MRI and discovered that I had a brain tail. Oh what a joyous, shock filled moment that was to find out that I wasn't going crazy ~ that there was actually something causing my migraines, vertigo and other symptoms. I recall feeling numb for several days as I slowly digested the news that I have something in my head that would require brain surgery.

I went through all of the stages of grief ~ denial, anger, bargaining, depression and acceptance. I think I have cycled through all of the stages over and over again throughout the year. I have been more than ready to go ahead and have the surgery done ~ but here I am a year later ~ one neurologist ~ five neurosurgeons ~ one ENT ~ one trip to The Chiari Institute ~ 3 MRI's later!

I can't help but be thankful that I am still functioning, can hold down a full time job, still keep up with the kid's buzy schedules, continue doing my life with the brain tail in tow. I won't lie to you, things have gotten a lot worse ~ incredibly worse over the past 365 days ~ but I know that there will be a solution soon ~ I have faith.

Here are some pictures of my brain tail ~ I wonder what it looks like now?


Tuesday, September 25, 2007

For the Love of Doritos!

Shop Lifting Seagull - The top video clips of the week are here

Sam the shoplifting seagull. This is a true story ~ you can read all about it on I just love how Sam the seagull oozes with self confidence ~ he definitely knows what he wants and knows where to get it. He can work a crowd if need be. The customers enjoy his stealth shoplifting visits so much that they are actually paying for the chips that he steals!

Sunday, September 23, 2007


I am still brushing the wood smoke from my eyes, a feeling of calm has settled inside, my hurried pace of life has slowed a wee bit. Camping this past weekend was just what I needed ~ sleeping under the stars, sitting around a campfire and laughing with friends, hiking in the mountains ~ I could see fingerprints of God everywhere I looked. What an amazing creator He is ~ the fall foliage is almost at it's peak in the Adirondacks ~ the brilliant red leaves took my breath away! (The picture posted is the view from our campsite ~ I didn't take it myself)

When I drove up to the campsite, the park ranger informed me to be on the look out ~ the camp site was on bear alert ~ black bears had been sited in the camp. I guess my reading up on black bears was not totally fruitless ~ I knew what to do if I happened to run into one of them in the middle of the night. However, nothing prepared me for the incredibly mournful and creepy sound of the loons in the middle of the night! Think about any film where campers in the woods are attacked by some crazed woodsman ~ cue the creepy music ~ and you hear the loon ~ I nearly jumped out of my skin! The loon wail sounds very similar to the call of wolves and coyotes.

All things considered: bacteria water warnings, a blue heron with the wing span of a pterodactyl, scurrying creatures in the middle of the night, sub-zero Arctic temperatures, the assistant to the den-mother, tales of working in factories, headlamps the size of street lights, a couture armadillo purse, out gassing smores, coin-op showers and tons of other tales that will remain unmentioned to protect the innocent ~ I had a relaxing, spirit renewing weekend. BTW ~ no bears were sighted while we were there!

Thursday, September 20, 2007


I saw this today ~ brain tricks ~ really amazing how the brain seems to fill in the gaps ~ there's still hope for me!

EXTRAORDINARY BRAIN TRICKS - The best free videos are right here

Crash Helmet

I was packing up my car last night for my camping trip this weekend and tripped on the threshold, falling into the doorway. That middle toenail on my right foot ~ collateral damage ~ wasn't really serving it's purpose anyway! SERIOUSLY ~ I am having trouble walking these days ~ I run into things, trip over things that aren't there ~ I am feeling totally out of control of my own movements ~ not a good feeling.

The most frustrating thing about this is that I can't pin-point exactly what's causing the increasing chaos of my leg movements. Could be tethered cord, could be Syringomyelia (sear-IN-go-my-EEL-ya) or wait ~ I know, maybe it's because my brain is hanging out in my spinal cord ~ TRUE STORY!

Which leads me to the need for a crash helmet. Stumbling around in the forest at night with nothing but the light of my headlamp to guide me is going to be an adventure in and of itself!

Swirling Abyss

Note to self ~ try to plan bouts of vertigo on days when you are not pack for a camping trip ~ No telling what will end up in my bag! I would be better off letting Mr. Bean do my packing for me ~ see cute video below ~

Seriously, this week has been pretty rough for me ~ all week I have had vertigo, electrical shocks running up and down my arms, headaches, insomnia and ultra sensitivity to sounds. I should be the life of the party this weekend! I am looking forward to spending a couple of nights out under the starry skies.

Tuesday, September 18, 2007

Dizzy but Happy

I can see a clearing up ahead ~ FINALLY ~ I got an appointment for #5 neuro surgeon ~ yea! Like I had expected, I will have to wait a month to get in to see him ~ October 18th ~ but I am on the cancellation list. So, for today, I am extremely dizzy, but a happy camper.

Monday, September 17, 2007

Please Wait

Today ~ I called my PCP's referral office to find out if they had made an appointment with my 5th neuro surgeon yet. They have had a full week to set up an appointment for me ~ I have been more than patient ~ I don't understand what's taking so long! When I spoke with someone at the office, they told me that the referral went through and I was good to go. WHAT? Was something lost in translation???

Apparently ~ they had written down that I was able to get an appointment, even though it was a month from now ~ SERIOUSLY??!!! I informed them that I do not have an appointment, because the surgeon's office won't let patients make their own appointments ~ the doctor's office has to do it. So, very tactfully, I kindly asked my PCP's office to please make an appointment for me and call me back today with the date and time. So, shock of all shockers, they didn't call me back ~ still no appointment ~ I will have to call them again in the morning.

As you can probably imagine, by the time I got home from work today I was not in the greatest of moods. So I grabbed my running shoes and headed out for a walk on the trail. When I got in my car, my radio/cd player didn't have any sound coming out of it ~ nice ~ another annoyance to add to the day. By the time I got to the trail I was more than ready to hit the ground running to unload some of the built up frustration from the day. I turned on my Nano and glanced at the power gauge and it was on red with the tiniest amount of power left.

At that point ~ I lost it ~ I couldn't handle one more thing going wrong ~ and NOW ~ I was going to be on my run ~ all alone ~ in the silence ~ I just couldn't take it today. I went ahead and clicked my music to my 'inspirational mix' and started moving. The song that came on couldn't have been more perfect ~ Josh Groban's 'You Raise Me Up' followed by 'You're Never Alone' ~ Talk about hearing the words of God ~ and such a quiet reassurance that I am not alone in all of this and there are reasons for the obstacles that are beyond my comprehension.

"You Raise Me Up"

When I am down and, oh my soul, so weary;
When troubles come and my heart burdened be;
Then, I am still and wait here in the silence,
Until you come and sit awhile with me.
You raise me up, so I can stand on mountains;
You raise me up, to walk on stormy seas;
I am strong, when I am on your shoulders;
You raise me up... To more than I can be.

Sunday, September 16, 2007

Higher Ways

Today at church the Bible passage written below spoke loudly and gently reminded of the truth in the Lord's words ~ His ways are higher than mine ~ he has perspective that I will never have ~ I have to trust that He has plans for me ~ Lean by faith and not sight ~ So hard for a mere mortal to digest ~ and like a child, I need the constant reminder from one who is much wiser than me.

Isaiah 55:8-9

8 "For my thoughts are not your thoughts,
neither are your ways my ways,"
declares the LORD.

9 "As the heavens are higher than the earth,
so are my ways higher than your ways
and my thoughts than your thoughts.

Word of God Speak...

So Small

My prayer for today ~ Lord, please turn this mountain that I have been climbing into a grain of sand ~

So Small ~ Carrie Underwood

Yeah, Yeah

What you got if you ain't got love
The kind that you just want to give away
It's ok to open up
Go ahead and let the light shine through
I know it's hard on a rainy day
You wanna shut the world out and just be left alone
But don't run out on your faith

Cause sometimes that mountain you've been climbing
Is just a grain of sand
And what you've been out there searching for forever
Is in your hands
And when you figure out love is all that matters after all
It sure makes everything else seem
So small

It's so easy to get lost inside
A problem that seems so big at the time
It's like a river that's so wide it swallows you whole
While you're sitting around thinking about what you can't change

And worrying about all the wrong things
Time's flying by, moving so fast
You better make it count cause you can't get it back
Sometimes that mountain you've been climbing
Is just a grain of sand
And what you've been out there searching for forever
Is in your hands
Oh, and when you figure out love is all that matters after all
It sure makes everything else seem
So small, yeah yeah yeah yeah yeah

Sometimes that mountain you've been climbing
Is just a grain of sand
And what you've out there searching for forever
Is in your hands
And then you figure out love is all that matters after all
It sure makes everything else
Oh, it sure makes everything else seem
So small

Yeah, yeah

Friday, September 14, 2007

Wisdom From A Turtle

I went on a walk/run yesterday after work ~ the air was crisp, the sun was shining, a hint of fall was in the air. I had been super dizzy and off-balance all day and expected that going on a walk would prove to be challenging. As I began my trek I noticed that my legs felt like bags of concrete, it felt like I was wading through quicksand! Getting through my workout was going to take a while.

As I was stumbling along the trail, I noticed something up ahead that looked out of place ~ right in the middle of the path. It looked like a rock, but as I got closer, I saw that the rock had a head, arms, legs and a tiny tail. I stopped and crouched down to inspect the baby turtle ~ he was cute and wasn't moving a muscle. I patted the little guy on the top of his shell and bid him Godspeed on his journey. I said a little prayer for him that he was able to safely cross the path before a cyclist came zipping down the trail. I had high hopes that I might see him again on my return trip, but he was gone.

The Native Americans believe that the turtle represents nurturing, mother energy, survival, longevity, protection, healing, patient persistence, the keeper of doors, the art of grounding and knowledge. Turtles encourage us to go with the flow ~ they teach us to enjoy the journey we are on without rushing the pace. They teach us to take things slow and be patient in attaining our goals. Turtles show us new perceptions about time and our relationship with it.

Once again ~ message received and yet such a hard message to digest! This week has crawled along at a painful pace. Waiting for a phone call from my PCP referral's office so that I know when the appointment with my newest surgeon will be. I have called them 2 times this week already and am considering calling them again today to see what's taking them so long. Ergo ~ the message of the turtle ~ go with the flow ~ see the forest. Now if I could just get a giraffe to cross my path I would be a happy camper. Symbolism wise, giraffes are all about attaining the unreachable.

Thursday, September 13, 2007

Searching for a Spoon in a Box Full of Forks!

I keep a full set of utensils in my desk at work ~ you never know when a spoon, fork or knife might come in handy. BTW ~ my co-workers are still a little scared that I have a steak knife in my desk, because of the rumor that I doubled as a covert knife thrower when I lived in Texas. But that is a totally different story!

So ~ yesterday, I accidentally took my lone spoon home along with the dirty plastic wear from lunch. I fully intended to bring a replacement spoon back to work with me this morning but seeming that my memory is totally shot due to the rude brain tail invasion ~ I forgot. Ergo the conundrum I was presented with this morning.

I've recently changed my work hours and now get into work an hour and a half earlier. I've started bringing my breakfast with me to work ~ so this morning I brought cereal and milk ~ novel idea ~ right? You see ~ my point to this post is coming into focus. As soon as I realize I am spoonless, I start rummaging around the office in search of one. I find a box of plastic forks in the storage closet ~ could there possibly be a spoon hidden in with the forks? No such luck. I also saw a box of plastic knives (they don't work so well with the sport of knife throwing) ~ no box of spoons. The irony and symbolism of the situation make me laugh out loud! Eating cereal with milk does not work very well with a fork standing in for a spoon ~ the milk essence just falls through the tines. I was already planning to go ahead and use the fork for my breakfast ~ I am a Libra ~ I adapt easily ~ so I will just drink the milk after the cereal is gone ~ no problem.

Then as a last ditch effort ~ I asked a co-worker if he knew of any spoons in the office. He quickly jumped out of his chair and headed over to the supply closet. I am thinking, dummy ~ I've already scoured the closet and there isn't a box of spoons in there! I hold my tongue and watch the scene unfold. He picks up the box of knives and I peer inside ~ holy heat ~ there in the midst of the knives there are three spoons!

If you have read my blogs and actually comprehended any of my ramblings you know that I like symbolism ~ parables ~ they speak to me and shed light in the dark places of my life. So finding a spoon (see Spoon Theory) in a box of knives ~ huge breakthrough for me! Expect the unexpected ~ everything is not always as it seems ~ message received.

Tuesday, September 11, 2007

Baby Brain

My blog buddy Queli has finally had her surgery at TCI this week and she has begun the long road to recovery. My prayers go out to her ~ she has finally found resolution in having the surgery. Prayers have been answered ~ all it took was a ginormous leap of faith! Like others who have gone on ahead of me on this winding Chiari road ~ she is an inspiration to me and she continues to cheer me on in my journey.

Now it's time that she baby her noggin and get a month or two of some good old fashion rest and relaxation. Attawaytogo Queli ~

Picketing and Protesting

One of my dear friends, E, blogged about me yesterday ~ Her ferocious attitude toward the bottom dwellers has given me strength to keep up the fight. She has supported me every step of the way ~ Should the need arise to take action ~ she will be there in a heartbeat! We started entertaining this dialog as our plan of attack unfolds:

Me: your blog was perfect ~ and just wait ~ I might just have you write a letter for me or better yet ~ we could protest and throw eggs outside of the scum-sucking-bottom-dweller's headquarters ~ we will wear sunglasses of course so no one will recognize me!

E: you'll be stumbling around like you are drunk, they'll have you arrested for public intoxication! yeah, sunglasses are going to hide you

Me: LOL! That's why you are there ~ my wing woman ~ I can't look drunk without a partner in crime!

E: silly ~LOL ~ tell you what, I'll get drunk so we can be the same

We will certainly look much cooler than the prohibition picketers of the early 1900's! But seriously, something has to happen just to get them to realize that this is an urgent matter. I have sent word to the local newspaper in hopes that someone will want to write about my story ~ I want to raise Chiari awareness so that others won't have to put up with the antics of jumping through fire hoops and walking on water just to get out-of-network surgery! Door to door to the Chiari Institute it's 171 miles from my be continued...

Is it just me ~ or does anyone else hear in the background ~ "Why is all the rum gone? "

Monday, September 10, 2007

I Will Go Through The Valley

Strange feeling ~ this place I am in ~ I am inside a swirling vortex with no clear way out ~ but stranger, still, I feel surrounded, protected, spoken for ~ the awesome peace that passes understanding ~ Present but introspective ~ maintaining balance on the outside, but turmoil on the inside.

I heard this song today on my way into work ~ again ~ the words have spoken to my heart. I am clinging to the promise that God is not through with me ~ that my trials will bring me closer to Him.

I frequently feel so alone and afraid during this journey ~ angry with the whole insurance system ~ it's painfully clear that I am just a name on a sheet of paper to them ~ not a human with a life. And yet ~ I still believe that all of this is happening to me and my family for a reason ~ more will be revealed in time.

If You Want Me To ~ Ginny Owens

The pathway is broken
And the signs are unclear
And I don't know the reason why you brought me here
But just because You love me the way that You do
I will go through the valley
If You want me to

Now I'm not who I was
When I took my first step
And I'm clinging to the promise
You're not through with me yet
So if all of these trials bring me closer to You
I will go through the fire
If You want me to

It may not be the way I would have chosen
When you lead me through a world that's not my own
But You never said it would be easy
You only said I'll never go alone

So when the whole world turns against me
And I'm all by myself
And I can't hear You answer my cries for help
I'll remember the suffering Your love put You through
And I will go through the valley
If You want me to

Saturday, September 8, 2007

Somewhere Down the Road

Somewhere Down the Road ~ Amy Grant

So much pain and no good reason why

You’ve cried until the tears run dry

And nothing else can make you understand

The one thing that you held so dear

Is slipping from your hand

And you say

Why, why, why

Does it go this way

Why, why, why

And all I can say

Somewhere down the road

There’ll be answers to the questions

Somewhere down the road

Tho we cannot see it now

And somewhere down the road

You will find mighty arms reaching for you

And they will hold the answers at the end of the road

Yesterday I thought Id seen it all

I thought I'd climbed the highest wall

Now I see the learning never ends

And all I know to do is keep on walking

Walking round the bend singing

Why, why, why

Does it go this way

Why, why, why

And all I can say somewhere down the road

There’ll be answers to the questions

Somewhere down the road

Tho we cannot see it now

And somewhere down the road

You will find mighty arms reaching for you

And they will hold the answers at the end of the road

Thursday, September 6, 2007

Looking for an open door ~ finding a window

This afternoon when I was going through the daily stack of mail my eyes focused on a letter from the insurance company. They told me that they had 3 weeks to make a decision on my appeal ~ I was thinking it wasn't a good sign that they had already made a decision. DENIED ~ again ~ did I really believe that they were going to make this easy for me? Basically, they said that there was a local doc who said he would do the decompression for me (I think his exact words were that decompressions are a routine procedure) and that was their final decision. If I didn't like their decision I was instructed to submit another appeal.

First of all ~ did they even READ the two excellent letters of recommendation that I submitted from two outstanding local doctors? Probably not ~ I envision they took one look at them and then tossed them into a file. SERIOUSLY ~ I have been paying premiums to the same insurance company for almost 8 years now and they spend two seconds in deciding my future!?! BTW ~ the doc they have selected to do my surgery was my fourth surgeon who I dubbed 'the godfather' ~ nope ~ still won't let him cut my head open ~ his bedside manner was absolutely horrible!

SO ~ maybe all this time I was looking for an open door when I really should have been searching for the all too discreet window located above the door ~ of course ~ why didn't I think of that!?! I went for an hour run/walk tonight to help me digest the denial letter and to figure out what my next game plan will be. A name came floating through my mind ~ a name I had seen in some of the Chiari Yahoo group chats ~ a surgeon about 20 miles north of here ~ studied under Dr. Milhorat (TCI) ~ great success with surgeries ~ treats chiari and the secondary problems, too ~ compassionate ~ caring ~ empathetic ~ possibly in-network ~ My mind was racing faster than my legs could carry me back to my car. Could this person really be for real or did my CSF starved brain make it up? Has he been there all along ~ right under the radar???

Sure enough ~ my recollection was right ~ he is local ~ and ~ wait for it ~ he is in-network with my insurance company. So ~ first objective, tomorrow morning, get a referral for this new surgeon ~ maybe he could do my surgeries? I am hanging onto hope here ~ trusting that the window will show me the way to the light.

Wednesday, September 5, 2007

Leap of Faith

I have a blog buddy who is taking a leap of faith ~ although paperwork and red tape are standing in her way of surgery ~ she's on her way to TCI ~ anyway. I admire her leap of faith ~ incredible strength ~ leaning in faith. I pray that she gets the treatment she needs and that all of the road blocks disappear.

I can't help but see Indiana Jones when I hear the term "Leap of Faith" ~ don't you agree?!?

You Find Out Who Your Friends Are

I have truly found out who my friends really are over the past year ~ Not everyone can handle the harsh reality of brain surgery. Some smile politely ~ a forced smile creeps across their face ~ I can tell that they just want to turn & run ~ Fear can paralyze a person. I totally understand that some people just don't have the coping skills to be comfortable with someone else's pain. Although I understand this ~ it's still painful knowing that I won't be able to fully share this journey with some of my most adored friends. It is part of the grieving process ~ letting friends go, knowing that after my 'brain is fixed' ~ they will come out of hiding ~ once the turmoil has settled.

On the other hand, friends I thought were gone forever have suddenly come back into my life. This has brought great joy to my heart and has returned a smile to my face. There is nothing in the world like the feeling you get when you talk with a lifelong friend who has been absent for far too long. You pick up where you last left off ~ it's like no time has passed.

The reactions that I have gotten from friends has been as varied as the flavors of Jelly Belly jelly beans. My co-workers don't miss one opportunity to make a brain joke or make up some new lyrics with the word 'brain' in it ... think 'Blame It On The Brain' to the tune of a famous Milli Vannilli song. In my true sarcastic form ~ I retaliate with idle threats to send FedEx the left over brain parts from my surgery if they don't stop making fun of me and my big brain! So ~ my brain is bigger than yours ~ deal with the facts ~ I can't help it ~ I was born this way.

I have one friend who is truly a soul sister $:)$ ~ she has been my sounding board and my comic relief. She has offered to sit by my side and hold my hand during and after surgery as long as I have a single, wealthy, good looking McDreamy Neuro-surgeon. True story! Seriously ~ when I have told her about yet another insurance roadblock she has threatened to come up here and do some negotiating on my behalf. She asks me on a daily basis how I feel ~ she doesn't ever want the sugar coated answer ~ she really wants to know the truth.

I am convinced that God puts people in our lives so that we can handle life ~ I just couldn't do it without their support. There are sooo many of you out there ~ you know who you are ~ Thanks for listening to me ramble on about doctor appointments, vertigo, headaches, brain farts ~ it all sounds so boring after a years time, I am sure of that! I have really been mulling over Oriah Mountain Dreamer's The Invitation lately ~ Her message is raw and real ~ I am discovering what sustains me when everything else shrivels away...
The Invitation byOriah Mountain Dreamer

It doesn't interest me what you do for a living. I want to know what you ache for, and if you dare to dream of meeting your heart's longing.

It doesn't interest me how old you are. I want to know if you will risk looking like a fool for love, for your dream, for the adventure of being alive.

It doesn't interest me what planets are squaring your moon. I want to know if you have touched the center of your own sorrow, if you have been opened by life's betrayals or have become shriveled and closed from fear of further pain!I want to know if you can sit with pain, mine or your own, without moving to hide it or fade it, or fix it.

I want to know if you can be with joy, mine or your own, if you can dance with wildness and let the ecstasy fill you to the tips of your fingers and toes without cautioning us to be careful, to be realistic, to remember the limitations of being human.

It doesn't interest me if the story you are telling me is true. I want to know if you can disappoint another to be true to yourself; if you can bear the accusation of betrayal and not betray your own soul; if you can be faithless and therefore trustworthy.

I want to know if you can see beauty even when it's not pretty, every day,and if you can source your own life from its presence.

I want to know if you can live with failure, yours and mine, and still stand on the edge of the lake and shout to the silver of the full moon, “Yes!”

It doesn't interest me to know where you live or how much money you have. I want to know if you can get up, after the night of grief and despair, weary and bruised to the bone, and do what needs to be done to feed the children.

It doesn't interest me who you know or how you came to be here. I want to know if you will stand in the center of the fire with me and not shrink back.

It doesn't interest me where or what or with whom you have studied. I want to know what sustains you, from the inside, when all else falls away.

I want to know if you can be alone with yourself and if you truly like the company you keep in the empty moments.