Monday, December 31, 2007

Somewhere in the Middle ~ AGAIN!

I blogged about this song back in August ~ and I am still somewhere in the middle. The lyrics resonate in my head over and over again. Over the past couple of days we have spent a lot of time with friends and family, celebrating the holidays. The ginormous elephant in the room (brain tail) has been brought up in conversation a lot, lately.

I don't mind talking about my surgeries that are on the horizon. Talking about my brain tail helps me mentally prepare for what lies ahead. People have often asked me if I am scared ~ the obvious emotion most people would be feeling. For most people, the thought of going to a hospital and dealing with needles and anesthesia are terrifying.

I think my primary feeling is more the feeling of being stuck in between the now and the not yet ~ wanting to surge ahead but patiently waiting for my turn. I am looking forward to ringing in 2008 tonight ~next year will be a new lease on life for me ~ the other side of brain surgery. Happy New Year blog lurkers out there and please, don't be shy, leave me a comment some time just to say 'hi' and don't forget to leave your e-mail address so I can e-mail you back!




Somewhere In The Middle ~ Casting Crowns

Somewhere between the hot and the cold
Somewhere between the new and the old
Somewhere between who I am and who I used to be
Somewhere in the middle you'll find me

Somewhere between the wrong and the right
Somewhere between the darkness and the light
Somewhere between who I was and who you're making me
Somewhere in the middle you'll find me

Just how close can I get, Lord, to my surrender
Cause I'm losing all control

Fearless Warriors in a picket fence
Reckless abandon wrapped in common sense
Deep-water faith in the shallow end
We are caught in the middle
With eyes wide open to the differences
The God we want and the God who is
But will we trade our dreams for his
Or are we caught in the middle
Are we caught in the middle

Somewhere between my heart and my hands
Somewhere between my faith and my plans
Somewhere between the safety of the boat and the crashing waves
Somewhere between a whisper and the Lord
Somewhere between the altar and the door
Somewhere between contented peace and always wanting more

Somewhere in the middle you'll find me

Just how close can I get, Lord, to my surrender
Cause I'm losing all control

Fearless Warriors in a picket fence
Reckless abandon wrapped in common sense
Deep-water faith in the shallow end
We are caught in the middle
With eyes wide open to the differences
The God we want and the God who is
But will we trade our dreams for His
Or are we caught in the middle

Fearless Warriors in a picket fence
Reckless abandon wrapped in common sense
Deep-water faith in the shallow end
We are caught in the middle
With eyes wide open to the differences
The God we want and the God who is
But will we trade our dreams for His
Or are we caught in the middle
Are we caught in the middle

Lord I feel you in this place
And I know your by my side
Loving me even on these nights
When I am caught in the the middle
Caught in the middle

Friday, December 28, 2007

LOST Season 4

LOST Season 4 premieres on Thursday ~ January 31, 2008. With all that has been going on I almost forgot about our favorite castaways! If it's been too long since you thought about Sawyer, Locke, Sayid, Jack, Kate ~ here's a recap from Season 3 to jog your memory.




Whatever they came for, it isn't us ~

There isn't much time! ~ if you want to live you need to come with me ~

There's a traitor in our midst ~

Every person on this island will be killed ~

We are really going home ~

We made a mistake ~ we weren't supposed to leave ~

We have to go back Kate!


Here's a link for more trailers ~ spoiler alert!

Thursday, December 27, 2007

Word of God Speak

I had some unexpected 'me' time after work today ~ I have been yearning to get outdoors and stomp around in the snow. So as soon as I got home I quickly changed clothes, laced up my snow boots, pulled on a hat and gloves and headed outside for a quick walk.

It had been snowing lightly all day long and the sun was shrouded by the clouds. As I pulled into the parking lot at the trail head it was clear that I was going to have the trail all to myself. The crunch of the snow beneath my feet was music to my ears. It has become all too real to me that these quiet moments are greatly treasured as the time in the next month will be my only opportunity to be active and enjoy outside wintertime activities.
There is something so surreal about the light and the way the air feels during a snow ~ everything is lightly painted in white ~ the air smells clean and pure. Even the pounding headache that had been with me all day long was temporarily lifted ~ the beauty of it all left me at a loss for words.

Word of God Speak ~ by Mercy Me

I'm finding myself at a loss for words
And the funny thing is it's okay
The last thing I need is to be heard
But to hear what You would say

[CHORUS]

Word of God speak
Would You pour down like rain
Washing my eyes to see
Your majesty
To be still and know
That You're in this place
Please let me stay and rest
In Your holiness
Word of God speak

I'm finding myself in the midst of You
Beyond the music, beyond the noise
All that I need is to be with You
And in the quiet hear Your voice

[REPEAT CHORUS 2x]

I'm finding myself at a loss for words
And the funny thing is it's okay




Wednesday, December 26, 2007

Epic Battles

It was bound to happen ~ the growing turmoil in my mind and body has given way to epic battles. (LOTR nerdling flag waving high!) Think Balrogs, trolls, fell beasts and Uruk-hai with no sight of Ents, Elves or Wizards to come to the rescue. Lots of warfare ~ internally ~ emotionally and physically ~ the time gap between now and surgery dates is getting smaller each second.

Before the appeal was overturned the enemy was the insurance company ~ something outside of myself ~ and now I am finding turmoil within myself. On a daily basis I am fighting back fear, doubt and more fear. I know that fear does not come from God:


For God did not give us a spirit of timidity (of cowardice, of craven and cringing and fawning fear), but [He has given us a spirit] of power and of love and of calm and well-balanced mind and discipline and self-control. 2 Timothy 1: 7
It is the Lord Who goes before you; He will [march] with you; He will not fail you or let you go or forsake you; [let there be no cowardice or flinching, but] fear not, neither become broken [in spirit--depressed, dismayed, and unnerved with alarm]. Deuteronomy 31: 8
I have been surprised by all of the spiritual warfare going on in my mind ~ casting doubt on the TRUTHS of the Bible ~ trying to take my focus away from the Lord. I am gently reminded to dig into the Word of God ~ put on the 'full armor of the Lord'. Although I do not understand why I must take this path of hardship ~ I know that all things work together for good for those who know and love God.

And we know that all things work together for good to them that love God, to them who are the called according to his purpose. Romans 8:28


Wednesday, December 19, 2007

The Dash



A friend of mine sent me this poem/movie yesterday and I just had to share and pass it along! The Dash expresses the simple truths of our purpose here on earth.

"What matters is how we live and love."

Enjoy the vid and if it's too small ~ here's the link where it will show full screen. I hope this brings you a renewed perspective on your life! http://www.thedashpoemmovie.com/

Amazing Medical Story

An amazing medical story was on the Oprah Winfrey show last week. As a member of the Army Reserves, she was deployed to Iraq where she became the victim of a roadside bomb. Shrapnel from the bomb penetrated three lobes of her brain and she was given a 2% chance of surviving.

The neurosurgeon who saved her life removed a large portion of her skull and sewed it inside her abdomen for safe keeping. She was then shipped out the the United States where she spent several months in the hospital. Please take a moment to click on the link and read the story. This surgeon basically said that he 'goes to the mat' with all of his patients ~ his goal is to save every life that ends up in his operating room.

Waiting For My Real Life To Begin

The resounding chorus that keeps playing over and over in my head is ~ "I will worship in the waiting ~ I will worship and not grow bitter cause I know you see the end of it all ~ I’ve seen the blooms of spring, new life in everything. But now it seems so grey, bright colors fade away. This winter seems much longer and colder than before, but I will worship in the waiting, expecting something more until the sun shines warm upon my face again." Finally FFH has put their song ~ In the Waiting ~ up on You Tube so that you can hear it yourself.

Waiting seems to be an ongoing theme with me ~ I feel like a bungee cord is attached around my waist. I keep trying to surge ahead and am constantly pulled back. I don't do the waiting thing very well. I'm not second guessing my decision to go ahead with surgery ~ I jsut want to get the whole thing over and done with.

I have visions of tulips and daffodils emerging from the soil after a long winter's nap ~ new life ~ butterflies emerging from cocoons ~ waiting for my real life to begin ~ the 'after brain surgery' chapter ~ there has got to be a best seller book in here somewhere ~ true story!.

Waiting For My Real Life To Begin ~ Colin Hay

Any minute now my ship is coming in
I'll keep checking the horizon
And I'll stand on the bow
And feel the waves come crashing
Come crashing down, down, down on me

And you said, "Be still, my love
Open up your heart
Let the light shine in"
Don't you understand?
I already have a plan
I'm waiting for my real life to begin

When I awoke today suddenly nothing happened
But in my dreams I slew the dragon
And down this beaten path
And up this cobbled lane
I'm walking in my own footsteps once again

And you say, "Just be here now
Forget about the past
Your mask is wearing thin"
Let me throw one more dice
I know that I can win
I'm waiting for my real life to begin

Any minute now my ship is coming in
I'll keep checking the horizon
And I'll check my machine
There's sure to be that call
It's gonna happen soon, soon, oh so very soon
It's just that times are lean

And you say,” Be still, my love
Open up your heart
Let the light shine in"
Don't you understand?
I already have a plan
I'm waiting for my real life to begin

Hey heyeyeyeyey
Hey yeeeeeee
Hey heyeyeyeyey
Eeh eeh eeh eeh eh

On a clear day
I can see, see for a long way

On a clear day
I can see, see a very long way







Tuesday, December 18, 2007

Armadillo

What do you do when an armadillo shows up in your dream? Random ~ I know ~ but not so random considering I am a Native Texan and I am the proud owner of an armadillo purse! Until I looked up some info on these prehistoric looking creatures I never knew there were so many types of them. I am pretty certain that I have only seen one species ~ the nine banded armadillo which happens to be the state small mammal of Texas.

I remember seeing a special about bizarre facts about animals and the armadillo was mentioned. This is absolutely fascinating ~
"Although breeding occurs in July, the embryo remains in a dormant state until
November. Four young are born in a burrow in March. All four young, always of
the same sex, are identical quadruplets and developed from the same egg. They even share a single placenta while in the womb. Armadillos are the only mammals
in which multiple young form from a single egg with any regularity. "
This post is random ~ I know ~ but I have a point. I looked up the meaning of the armadillo totem and it symbolizes boundaries, being grounded and self protection. I could use a good dose of being grounded and protected!

Sunday, December 16, 2007

Random

I was tagged this week by Billy Bob to list seven random things about me ~ so here I go ~
  1. I have swum in a cow trough many times during my summer camp camper/counselor days ~ true story ~ It is surprisingly quite refreshing but incredibly slippery on the bottom of the trough due to many years of cow slobber build up!
  2. I was an acolyte at church when I was in high school ~ one Sunday we were celebrating a big birthday of the church and I, along with a fellow acolyte, were asked to carry a ginormous sheet cake down the long aisle to the altar. We were laughing so hard the whole time that we almost dropped the cake on the floor.
  3. A sorority sister of mine once convinced me that she could make a parrot costume for me for a Spanish Galleon mixer. She dressed me in a bright tie dye shirt and pants and then stuck cut out feathers all over me. Was I convincing as a parrot ~ you be the judge ~ someone at the mixer told me that I must be in the wrong place and that the 70's mixer was down the street!
  4. I love to rappel down mountains, but the first time I tried rappelling it was at youth group at my church and we rappelled out the second story window. My foot went below the window ledge and I ended upside down. Then I was laughing so hard that I didn't have enough strength to pull myself back up.
  5. I absolutely can't deal with Saran Wrap ~ hate the stuff ~ curse words come flying out of my mouth at the thought of Saran Wrap (@#%#$^%)!
  6. My favorite Christmas movie is Christmas Vacation. "What's that squeeky noise?"
  7. I see dead people and read minds.

OK ~ now I am supposed to tag other bloggers ~ but I have never been a fan of putting pressure on others to deliver ~ but my blog buddy Erica, my friend, you are tagged for random blogging! Hey ~ you ~ random blog lurkers ~ peering into my personal life ~ if you are going to hang out long enough to read about my life ~ leave me a random comment ~ please!

Friday, December 14, 2007

Absence of Fear

Life is always throwing me something totally unexpected. On Thursday we had a snow storm blow in around 11am. Needless to say I was not looking forward to the long drive home. It usually takes me about 25 minutes to drive to work so I knew it would take me at least an hour to get home.

My first real experience with driving in winter weather was my senior year in college in West Texas. The weather there can change rapidly from sunny and warm to cold and icy. I got into an accident on black ice one night as I came upon a couple of cars that had already crashed. My options were limited ~ I could put on my breaks and hope to God I didn't hit the car that was rapidly getting closer or I could swerve and head into oncoming traffic. The wreck wasn't all that bad, I barely tapped the bumper of the car in front of me, but the out of control, sliding on black ice feeling has always stayed with me.

That being said, when the roads are slippery and if I slide just a little bit I am instantly covered with an overwhelming blanket of fear. So, getting back to my point, I was completely taken by surprise as I took note of how I was feeling while driving home in snow covered streets last night. I was completely calm, relaxed, just another drive home ~ slow ~ but not a big deal. This really took me by surprise and then I realized that fear is relative. Compared to brain surgery, I drive in the snow and ice is not such a foreboding task anymore.

Thursday, December 13, 2007

Love Thy Neighbor

So ~ we got our first nor'easter of the winter season today. I don't know the official measurement, but at last count we were over six inches ~ not too shabby for a pre-Christmas snow. As an added bonus ~ we are getting a huge snow storm on Sunday which will make today's storm look like a small blip on the radar.

So ~ it took me twice as long to drive home today due to the snow and ice on the road ~ not to mention the morons out there who just don't know how to drive on snow. Anyway, after I got home I warmed up, put on my snow shoveling clothes and headed out to tackle the driveway. First thing I noticed when I stepped outside ~ with shovel in hand ~ is that my neighbor across the street was using a snow blower to clear his driveway.

He was having a bonding moment with his daughter, teaching her the finer skills of snow blowing. A passing thought went through my mind, maybe this neighbor of mine will volunteer to at least help me move the super heavy, snow plow snow from the bottom of the driveway. He never even acknowledged me at all. After his driveway was completely clear of even a speck of snow, while whistling, he finished up the task with throwing a good level of salt on the driveway to prevent icing during the night. He neatly put his snow blower away in the garage, closed the door and that was it.

I could be bitter about the whole situation ~ but you know what ~ I am sorry for the guy that he missed out on a great opportunity to teach his daughter a lesson about random acts of kindness. I know that one day when I finally have a snow blower, if I saw someone slaving away with drifts of snow I will be sure to help them out. Love thy neighbor ~ it's a hard commandment to keep when you have a clueless neighbor.

Wednesday, December 12, 2007

It's Not Rocket Science ~ Just Say "Yes" & We Will Move On

Last weekend NBC aired the Best of Will Ferrell SNL skits ~ the Harry Caray one is one of my absolute favorites. He is diabolically random and he makes me laugh ~ good stuff!

Hey!!! What's your favorite planet?? Mine is the sun! I like it because it's like the king of planets!
What if the moon were made of bar-b-q spare ribs ~
Hey ~ what about that Mad Cow Disease?

Tuesday, December 11, 2007

"Year's Best" Meteor Shower to Peak December 13-14

I have always been fascinated with what's going on in outer space ~ maybe it was the Star Wars movies that set me on that path ~ maybe the hours I spent on the air strip at camp, straining my eyes to see shooting stars. I can't remember the last time I actually saw a meteor shower, so that means it's time to bundle up and look up into the heavens!

The Geminid meteor shower—considered by many to be the most active annual sky show—is going to be especially spectacular this year, astronomers predict.
Who can resist "especially spectacular"! Since this is the Christmas season, a most famous star comes to mind ~ the star that shone over Bethlehem the day Jesus was born. Imagine what was going on in the minds of the star gazers of the time.

They studied the heavens ~ they knew the stars ~ and all of the sudden there is this brilliant star shining in the heavens. I'll bet they were so curious that they couldn't help themselves ,but to drop all of their plans and journey to where the star shone. What an aw some sight that must have been!

Sunday, December 9, 2007

Run Run Rudolph (err ~ I mean Cheetah!)

Thespians beware ~ our girls can be so creative sometimes! They made up a Christmas skit in an hour ~ with costumes and props!

Friday, December 7, 2007

Who's Laughing Now?

I haven't seen this in a while, but it makes me laugh and reminds me to be kind to people who are a little different than me!

Thursday, December 6, 2007

We All Know One

Since I feel like I am sitting under a dark, gloomy, ominous cloud ~ I could use a healthy dose of laughter every day. This picture just cracks me up ~ who knew that birds could be so expressive!

Makes me wonder what their story is ~ is it a husband and a wife? siblings? friends? strangers who just happened to be standing in the same place at the same time? Is the bird on the left exasperated? embarassed? annoyed? Inquiring minds want to know!

Wednesday, December 5, 2007

Bears ~ Growing Up Grizzly

Last night I was flipping through the channels and found a kid friendly show on Animal Planet to distract my youngest one from crying ~ she had slipped and fallen on the ice on our driveway. I had seen the original Growing Up Grizzly show a while back that focused on Bart the Bear I. Bart was a very famous movie star. He acted in movies such as: Legends of the Fall, White Fang, The Bear, The Edge ~ an amazing animal!

The show that was on last night was Growing Up Grizzly 2 which focused on the three year old bears ~Little Bump and Bart II~raised by the same trainers ~ Doug and Lynne Seus. Watching the bears interact with the trainers like they are family members was amazing. I think that we have a lot to learn from bears ~ they are intelligent creatures who have a message to share with us. There was a particular moving part in the show when the trainers took the bears to an exclusive wild area and let the bears roam free while the trainers had a picnic nearby. Words just can't do the show justice ~ you just gotta watch it for yourself. I have posted some videos below that give you a taste of the magnificence of the bears.




Saturday, December 1, 2007

I've Come Too Far To Turn Back Now

You know that feeling you get either in the real world or in a dream where you find yourself in a place where you feel dread and fear all around you. Maybe it's a dark alley on a moonless night, maybe a forest trail as the sun is quickly sinking behind the mountains ~ either way your fight or flight response kicks into overdrive. You have a spit second when you have decide to either turn back or run ahead at breakneck speed. I feel like I have chosen to run ahead ~ but that doesn't mean that the journey is easier.

I think that now that the main fight to get to TCI is over I have relaxed enough to feel how much I am really physically falling apart at the seams. In two months I will be in recovery mode for a good three months, so now should be a time of kicking up my heels, enjoying life ~ but I am just not up to it! Did I tell you that I tried to mail a letter in the dish washer this week??? SERIOUSLY! The motions are about the same ~ pull the door down, put the letter in and shut it. The only thing different was that my dishwasher has no red flag thing signaling that there's new mail in the box.

Tuesday, November 27, 2007

Not A Good Sign

Did I ever mention that I am strong willed????
One has to accept pain as a condition of existence. One has to court doubt and darkness as the cost of knowing. One needs a will stubborn in conflict, but apt always to the total acceptance of every consequence of living and dying. ~Morris West
I have known all along since I was introduced to my Brain Tail that everything would happen in God's perfect timing ~ I have this image of me sliding into TCI in the nick of time ~ like someone collapsing just over the finish line after running a marathon.

I have read stories about other Chiarians who have had trouble walking and I couldn't quite understand that until now. So ~ I was on the treadmill at the gym last night ~ fighting back the tears as faced the reality that I am on a steep decline. I remember only a year ago when I was able to run 6+ miles at a respectable 6 miles an hour pace. My goal was to walk for 30 minutes ~ I set the pace at a paltry 3.5 mile per hour ~ about 10 minutes into my workout I noticed that I couldn't feel my legs anymore and needed to hold onto the treadmill so I wouldn't fall off the end ~ oi! Not a good sign ~ but the good news is that my body is telling me to cool my jets until I get to TCI ~ not an easy order to follow ...

Things To Do During Recovery


I have been trying to get organized and prepare myself for my upcoming surgeries. Trying to tie up loose ends ~ planning what to pack for the hospital. I have asked my chiari blog buddies to share their experiences ~ I want as many details as I can get so that I know what to expect. The consensus from the group has been pretty consistent ~ the first week or two after tethered cord and brain surgery are rough, but the boredom during the recovery period can flat out make you go completely bonkers! So, I have been filling up my Netflix list with movies in anticipation of fighting the boredom.

Since I am a Libra, I have an incredibly hard time making decision when I have a plethora of choices. I was thinking about all of the movies that I absolutely love and in creating the collage up above I have come to the conclusion that I am a bit of a hopeless romantic, which actually comes as a surprise to me. True, I have some sci-fi, drama, adventure movies sprinkled in there ~ but the ones that stick with me really tugged on my heart strings.

If you have any favorites and would like to share them with me, maybe I will add them to my growing list of must sees. I love movies ~ maybe it's my way of escaping for a while ~ they stay with me ~ people who know me usually can't have a conversation with me without hearing a quote from a movie slip into a thought, my precious. Movies inspire me ~ encourage me ~ make me laugh and cry ~ take me to far away places.

AFI 100 greatest movie quotes (montage)







An uber movie buff friend of mine sent me this video clip ~ it's super clever and has left me wondering what some of the movie titles are ~ enjoy ~

100 Movies, 100 Quotes, 100 Numbers







Thursday, November 22, 2007

In the Waiting

I heard this new song on my way to work yesterday. The imagery of the lyrics really spoke to me ~ I feel as if I am 'in the waiting' ~ waiting for the surgeries ~ waiting to see what life will look like on the other side of brain surgery. I know it's not going to be an instant change ~ the healing process will be gradual, like watching the frozen ground thaw after a long, hard winter. How perfect that the timing of the surgeries coincides with the changing of the seasons. As I anticipate the coming of springtime I will experience the renewing of my spirit and body.

In The Waiting

I’ve seen the red sea part,
I’ve seen the mountains move
But now it seems so dark,
I can’t even feel you
If you chose to be silent I’ll be silent too
I will worship in the waiting,
quiet before you
Until your voice like manna from the sky falls
I WILL WORSHIP IN THE WAITING
I WILL WALK WITH THIS SAND BENEATH MY FEET
THOUGH THE WINTER WIND IS BLOWING
THE GROUND IS NOT FROZEN UNDERNEATH
I WILL WORSHIP AND NOT GROW BITTER
CAUSE I KNOW YOU SEE THE END OF IT ALL
AND WITH THE SPRING WILL COME THE RAIN
AND I'LL SEE WHAT WAS GAINED
IN THE WAITING

I’ve seen the blooms of spring,
new life in everything
But now it seems so grey, bright colors fade away
This winter seems much longer and colder than before
But I will worship in the waiting, expecting something more
Until the sun shines warm upon my face again
He Leadeth me He leadeth me
By his own hand He leadeth me
His faithful follower I would be
For by his hand He leadeth me

Monday, November 19, 2007

Tunnel Vision

The last couple of days I have been struck with a tidal wave of emotions ~ I am trying to figure out what I am supposed to do next. I have been on the defensive ~ pleading my case ~ explaining myself to an endless stream of brain docrtors ~ with TCI as my goal all along. I should feel immense relief that there is light at the end of the tunnel ~ that I will be on the road to recovery soon ~ and still I am surrounded by doubt ~ fear ~ struggle! Like a thick fog has decended and shows no sign of lifting. At least I know that I am human!

So ~ the call came in yesterday ~ the surgical scheduler called to give me a surgery date. I totally expected that it would be a good two months down the road, but what I wasn't expecting was two surgery dates ~ almost a month apart. February 1st will be my tethered cord surgery and then on March 7th the decompression ~ yikes!

If there is anyone out there who has gone through the tethered cord surgery ~ I would love to hear what your experience was like ~ this is the surgery that has me rattled the most because of the aloofness of the invisible problem! I am especially interested in those of you that had the occult tethered cord and when they did the surgery there was no doubt that there was some strong tethering going on in there!

Somewhere inside I am relieved to have a date to focus on ~ I can continue to mentally prepare myself for this next journey ~ so weird that on the other side of these surgeries will be "my life after brain surgery" ~ I am praying for a peace that passes all understanding to settle in. I keep having an inner struggle that tells me that I am crazy for insisting of surgery ~ but then again ~I know that God has been here with me every step along the way ~ He is sparing me from permanent damage by doing the procedures now and not waiting ~ His timing is perfect ~ I just have to keep reminding myself of this! Voice of truth speak loud and clear ~

Friday, November 16, 2007

What's around the river bend?

I feel like I have a new perspective ~ I have finally made it up the hill ~ cut through the red tape and I can look back at how far I have come. What's around the river bend? What's above the next peak? I am trying to sit with the enormity of the tasks ahead of me ~ do I have some available time in my schedule for brain surgery? Sure, why not.

Friends and family have been my glue that have kept me together during my daily struggles, but one friend in particular has been right by my side every dizzy step along the way! Erica is one of those friends who is passionate about life ~ she asks the ugly questions ~ she wants to know every detail about how my body is falling apart ~ life is messy ~ she gets that ~ it's refreshing to be able to be so real with her. In the same breath, she's the kind of friend that can make me laugh until the tears come.

She posted a blog entry about me yesterday ~ she has an incredible talent to really listen to me and express how I am feeling when I can't find the words. I love you, sister, my friend!

Wednesday, November 14, 2007

Who Am I?


I am incredibly humbled by how human I am ~ how quickly I can go from feeling the hand of God come down and touch me on the shoulder ~ shine light in the dark corners of my life ~ and so quickly feel the grip of fear and doubt creep back into my life.

My S.O.S. was heard loud and clear ~ the rescue boat is coming soon ~ but when? Awesome, I've gotten the official letter from the insurance company explaining that they are supporting my quest to have surgeries to make things right with my brain and spine. I haven't gotten a call from TCI yet. I know that they are incredibly busy and I have set my expectations low and don't expect to hear from them until after Thanksgiving.

I hear Brother Jeremiah's words echoing in my brain ~ focus on Jesus ~ the problems will always be there ~ but focus on Jesus ~ look to him for support and strength.

Who Am I ~ Casting Crowns

Who am I,
that the Lord of all the earth
Would care to know my name
Would care to feel my hurt
Who am I,
that the Bright and Morning Star
Would choose to light the way
For my ever wandering heart
Not because of who I am
But because of what You've done
Not because of what I've done
But because of who You are
Chorus:
I am a flower quickly fading
Here today and gone tomorrow
A wave tossed in the ocean
A vapor in the wind
Still You hear me when I'm calling
Lord, You catch me when I'm falling
And You've told me who I am
I am Yours, I am Yours
Who Am I,
that the eyes that see my sin
Would look on me with love and watch me rise again
Who Am I, that the voice that calmed the sea
Would call out through the rain
And calm the storm in me
I am Yours
Whom shall I fear
Whom shall I fear
'Cause I am Yours
I am Yours

Monday, November 12, 2007

Miracle of the Moment

I woke up this morning to the all familiar stupor of greeting a new day after a night filled with restless sleep. As soon as I rolled out of bed and my feet hit the floor I could tell that my legs were betraying me already. The floor felt like it was moving beneath me and I struggled with my legs as my brain was commanding them to walk. Despite these symptoms, I was in a fairly good mood and was looking forward to my appointment with the genealogist this afternoon.

At about 8:30 this morning I got a call at work from a representative in the appeals department at the insurance company. She was speaking in hushed tones ~ she told me that they had received my appeals information and have thoroughly reviewed it before passing it along to the medical director. Then what she told me just blew me away ~ she told me that the medical director had approved BOTH surgeries at TCI!!!! BOTH ~ both the tethered cord and the brain decompression. I couldn't believe what I was hearing ~ then I started to cry ~ tears of joy, relief, thankfulness! God hear our prayers ~ and answered them ~ The funny thing is that the medical director's decision was probably already made by close of business on Friday.

When the woman on the other end of the phone heard me crying she told me to hold off, because she wanted to get through what she needed to tell me and wanted to get off the phone before she too started to cry. Obviously, I am very humbled by the news and I think the shock of it all hasn't worn off, either. To solidify my good news ~ I got clinical confirmation from the geneticist that I do indeed have Ehlers Danlos and I had blood work done to see if we can pinpoint which type I have. God is awesome!

Miracles still happen today ~



It's time for letting go
All of our "if onlies"
Cause we don't have a time machine

And even if we did
Would we really want to use it
Would we really want to go change everything

Cause we are who and where and what we are for now
And this is the only moment we can do anything about

So breathe it in and breathe it out
And listen to your heartbeat
There's a wonder in the here and now
It's right there in front of you
And I don't want you to miss the miracle of the moment

There's only One who knows
What's really out there waiting
And all the moments yet to be
And all we need to know
Is He's out there waiting
To Him the future's history

And He has given us a treasure called right now
And this is the only moment we can do anything about

So breathe it in and breathe it out
And listen to your heartbeat
There's a wonder in the here and now
It's right there in front of you
And I don't want you to miss the miracle of the moment

And if it brings you tears
Then taste them as they fall
Let them soften your heart

And if it brings you laughter
Then throw your head back
And let it go
Let it go, yeah
You gotta let it go

And listen to your heartbeat

And breathe it in and breathe it out
And listen to your heartbeat
There's a wonder in the here and now
It's right there in front of you
And I don't want you to miss the miracle of the moment

And breathe it in and breathe it out
And listen to your heartbeat
There's a wonder in the here and now
It's right there in front of you
And I don't want you to miss the miracle of the moment





Sunday, November 11, 2007

Focus on Jesus

I was really looking forward to hearing the sermon at church today. Our mission partner from Africa, Jeremiah Pallangyo, was going to preach. Every time I have heard him preach, God's words just flowed. Also, a couple of people at church had planned on praying for me after the service.

Jeremiah's sermon hit home with me ~ it was almost like his words were me specifically. He spoke about how when we focus on our problems in our lives we can be filled with impatience, depression and discouragement.

So, the response to this despair is to put our faith in God that He will help us to handle our problems. To have faith is to have hope in the things that are invisible. Trust in God. Put your mind into the word of the Lord! God will refresh you and give you refreshment in your heart. Jesus should be lifted higher than our problems.

I was reminded that, yes, I will have struggles and trials in my life. However, I will not be alone in the journey and it's very encouraging to glance back and reflect on all of the miracles and answered prayers in my life. I absolutely believe I have been trudging in the wilderness for a while with my Chiari journey. I was greatly encouraged by Jeremiah's sermon and was filled with a renewed sense of hope that would carry me as far as I needed to go.

After the service parishioners were invited to stay and pray for me. I was deeply humbled by the number of people who wanted to lift me up in prayer. I have had hands laid on me in prayer before, but this time was more meaningful, because my mom was there, too. Very specific prayers were lifted up ~ prayers to alleviate my physical symptoms ~ prayers to soften the hearts of the people reviewing my case ~ prayers for swift answers ~ prayers for my family and children ~ prayers for my faith and hope in the Lord.

During the prayers, an image started forming in my mind. I saw a gigantic boulder that was in the middle of the road. Suddenly, the big rock started to roll out of the way and I could see nothing but highway in front of me. The obstacle was removed ~ no explanation ~ it just moved as if someone had commanded it to move!

After the prayers were done I felt as if a huge weight had been lifted off my shoulders. I was no longer anxious about my appeals decision ~ in my heart I knew that no matter what, everything was in God's hands and in His timing.

I have attached a link for Jeremiah's sermon if you would like to hear his words of encouragement.
http://www.brunswickchurch.org/sermons/realaudio/upload/111107.mp3

Saturday, November 10, 2007

The Power of the Butterfly

Since I am having a hard time walking without falling over walking on the treadmill has been out of the question. So in an attempt to hold onto the smallest ounce of sanity in my life I have started swimming again. We are members of a family health club that has an awesome heated indoor pool and it's been a pleasant surprise that my brain tail allows me to swim.

Ever since I was a little girl I have loved the water. I have come a long way from swimming for the Briargrove Barracudas at age six. When I was a teenager I lifeguarded and taught swim lessons. There is something incredibly satisfying about working with a child who is terrified of the water and to watch them fall in love with swimming!

For most people, swimming translates to putting on your bathing suit and bobbing up and down in the water. Not me, I can't get into a body of water without breaking out in a full fledged racing butterfly stroke ~ I just can't help myself! Muscle memory is a powerful thing ~ I don't know if I will ever completely understand it ~ but I love swimming the butterfly stroke and it's permanently emblazoned in my memory. It is probably the most complicated and physically demanding stroke to swim.

My shoulders have always been semi double jointed and swimming butterfly
feels so good to me. Probably thanks to Ehlers Danlos I have a greater range of motion. So ~ for now ~ I am happy that I can workout and feel strong and healthy if for at least a little while.

Friday, November 9, 2007

HUGS

I saw this a while ago, Hug Someone Campaign. I was deeply moved by the effect it had on me ~ mostly because I am not a super huggy person by nature. From a very tender age, I've had personal space and intimacy issues. In the brain of a two year old, I learned very early on that when you hug on your big brother then they get killed by a horse. What kind of sense does that make now? It's completely ludicrous, I know, but survival skills are tough ~ they get emblazoned in our minds ~ our autopilot accepts them and they are very hard to purge!

So ~ after many hours of therapy, long talks with God and oceans of tears, I finally came to grips with the truth that hugging someone you love won't cause them to drop dead. TRUE STORY. OK ~ so I've given myself a reality check, but that still didn't make me instantly affectionate with others ~ it's a slow process. I've thought about this a lot lately mostly, because when I am in pain and struggling I push people away and pull back ~ I see the autopilot kicking in again. Survival ~ distance ~ set apart ~ detach ~ Most the time I feel that if I do let anyone in, allow them to comfort me or offer support, I just might melt into a puddle of tears.

OK ~ so why I can't I let myself fall apart from time to time??? I already feel like I have no control over myself anyway ~ the brain tail has totally taken over and I am grappling with trying to maintain some kind of control. I can hear you now, screaming at the computer
"you are a freaking delusional lunatic!!!"

I know I am ~ and I'm working on it already ~ My point is, we all need hugs for survival, SURVIVAL ~ So ~ here's my challenge 2 u ~ hug someone today ~ anyone ~ and I will do the same, because you know, we are ALL struggling in some area of our lives ~ either physically, emotionally, spiritually.

Make sure to watch this video below ~ it's awesome!



Thursday, November 8, 2007

Tree Roots

A tree with strong roots can withstand the most violent storm, but the tree can't grow roots just as the storm appears on the horizon.

~ Dali Lama


This quote was in the book that I am currently reading and it really resonated within my core. The process of growing strong roots has been a slow and sometimes painful process throughout my life. I believe that those of us who have tragic events in our life choose at that moment to stand firm and start growing roots or wither and die. "Hunker down" ~ that's Texas lingo for stand your ground and hold fast to whatever gives you strength.


Lately I have been drawing strength from my roots ~ they are keeping me anchored, grounded. They have found water in a land of draught ~ It's a good thing that I don't rely on good news from doctors and insurance companies for nourishment ~ I would have expired several months ago. Instead, I have kept myself alive by relying on scriptures ~ the undeniable truths that I am never alone in this journey. Despite the drought ~ this is where I belong ~ in this moment in my life! There has to be a greater purpose for these trials.

Jeremiah 17:8 He will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit."

Wednesday, November 7, 2007

Even Country Singers Get Chiari

I read the news report yesterday that Rosanne Cash was ending her tour early to have elective brain surgery. They didn't say why or what kind of surgery she was havingm, but my brain tail intuition told me that she had a brain tail, too. I can't imagine how difficult it must be to stand on stage night after night and sing with a brain tail in tow. Not to mention how hard it must be to stand upright without falling over. Best of luck to you, Rosanne for a successful surgery and a speedy recovery!


Tuesday, November 6, 2007

Dream It Anyway


God is great but sometimes life ain't good ~

I am reading a book (The Climb of My Life ~ Kelly Perkins) right now about a woman who had a heart transplant at age 35! She went from being a vibrant, athletic young woman to a patient waiting for a new heart in a blink of an eye. At some point in time while she was waiting for a new heart she looked at herself in the mirror ~ really looked at herself and when she did, she had to grab the bathroom counter to steady herself.





She hardly recognized the reflection in the mirror! The most shocking thing that she noticed was that her smile had been broken and she knew in that moment that she desperately wanted it back! Her lost smile and dreams helped fuel her forward to recovery.




Dreams are powerful and not to be taken lightly. I have to constantly remind myself of this as I wait for my new "head space".



Anyway ~ Martina McBride




You Can Spend Your Whole Life Buildin'
Somethin' From Nothin'
One Storm Can Come And Blow It All Away
Build It Anyway

You Can Chase A Dream
That Seems So Out Of Reach
And You Know It Might Not Ever Come Your Way
Dream It Anyway

[chorus]
God Id Great, But Sometimes Life Ain't Good
When I Pray It Doesn't Always Turn Out Like I Think It Should
But I Do It Anyway
I Do It Anyway

This Worlds Gone Crazy And It's Hard To Believe
That Tomorrow Will Be Better Than Today
Believe It Anyway
You Can Love Someone With All Your Heart
For All The Right Reasons
An In A Moment They Can Choose To Walk Away
Love 'em Anyway

Monday, November 5, 2007

It's In the Mail


Talk about getting a weight off my shoulders ~ I mailed my appeals package to my insurance company today. It's a good thing that someone isn't risking their life to deliver my package! When they sent me my denial letter back in September they included a sheet of paper where I could write my rebuttal and appeal the decision. I wish I could see their faces when they open the package of information I sent them. I crammed a folder full of information about Chiari, tethered cord, functional cranial settling, ehlers danlos ...

I have said a lot of prayers ~ it's out of my hands now. I prayed that whoever gets my case that they will be overwhelmed with compassion for me and my situation. That they will be moved to help me get to the Chiari Institute.

Saturday, November 3, 2007

Daylight Savings ~ Fall Back

Beginning in 2007, most of the United States begins Daylight Saving Time at 2:00 a.m. on the second Sunday in March and reverts to standard time on the first Sunday in November. In the U.S., each time zone switches at a different time.

Actually, the reasoning behind the change is to save energy. True Story! This year we don't change our clocks back one hour until 2am on November 4th!

Friday, November 2, 2007

Mind's Eye

So, I get a call ~ at my house ~ today ~ and it's neurosurgeon #5. He finally received the MRI disc with pictures of my lumbar spine. Remember, he couldn't figure out how to open the files for that disc when I was in his office. This time he had the help of his PA to open the files.

He called to tell me that he had reviewed the pictures and he does not believe that I have tethered cord. Then he sums up the conversation by saying, and I quote,
"I don't know what they are smoking down there ~ but you definitely don't have a tethered cord!"
Now I don't know how you might feel, but I thought that was a pretty unprofessional statement to insinuate that the brilliant doctors at TCI sit around smoking dope and making up diagnosis for their patients. It still amazed me how little faith doctors have and I am thankful that I have a lot of faith in God and faith in doctors who are experts in the Chiari field. But, seriously, how rude!

The point is ~ no ~ I don't have tethered cord, never said I did ~ but TCI thinks I have an occult tethered cord ~ translation, you can't see it on films but it's there. They know this because of the large number of patients who have it.

This song says it all ~ can you see a breeze ~ it's presence is revealed by the leaves on the trees ~ an image of my faith in the unseen ~ comfort me in my hurricane ~


Thursday, November 1, 2007

You Are A Pain In The Neck!

Dearest Brain Tail,

It has been lovely getting to know you so intimately over the past year. Your photo shoots have been stunning. The light from the MRI machines makes you look ten years younger. Even though you are family, twice removed on my mother's side and kissing cousin to the medulla oblongata family, I feel like it's time we had a heart to heart talk.

When you discovered the secret passage way through the foramen magnum and decided to move your stuff into my spinal column, what WERE you thinking? I know the space just oozed with spinal fluid goodness, but seriously, did you think I wasn't going to notice? When you bang on your drum set it gives me a pounding headache. Your frat parties are so wild that they make me stumble around like a drunk sailor who just got off the scrambler ride at the carnival! How exactly am I supposed to explain that to a police officer? Got any brilliant ideas Einstein??? I feel like I am losing my mind!

Quite frankly, you are a pain in the neck, true story! My buddy the spinal cord doesn't really enjoy your company. He's quite the introvert and needs his own personal space. When you irritate him, he sends electrical shocks up and down my arms to get my attention. He thinks he's being subtle, but believe me, I get his messages loud and clear. The whole roomie thing is not going to work out. I have been worried sick and have had insomnia over this whole situation.

Truth be known, I like you, you are kin, but you have got to move your carcass back into the skull ~ that's where you belong. It's only a matter of time before a surgeon comes in and evicts you. We can do this the easy way or the hard way, it's your choice. Either way, it's going to hurt like hell. It's possible you could get burned from this relationship and never be the same again. We will do our best to expand the space so you won't feel so crowded anymore. So, yeah, you are going to have to move out. I have dreams and plans and I am done dealing with your adolescent behavior ~ I am so over it! I am taking my life back!

Tuesday, October 30, 2007

Happiness is...

Happiness is thinking you are going to have to wait four months for a doctors appointment and getting one in TWO WEEKS! I am overjoyed today! Knowing that I will soon be meeting with a doctor that specializes in rare genetic disorders ~ knowing that soon and very soon I will be one step closer to finding a resolution to my Brain Tail problems makes me happy! The kind of happy you feel when you are a kid and all you want to do is run free and feel the wind in your face!

Wake Up Already

This video is too cute not to share and anyone who has a cat out there can empathize.

Monday, October 29, 2007

Into the Day

Random acts of kindness are greatly underrated ~ Today, first thing this morning, I fired off an e-mail to my potential genealogist's office with the information they had requested. In the e-mail I briefly explained my situation again, mentioned that determining if I have EDS was a matter of life or death. I kindly asked for someone to acknowledge receipt of the e-mail. Jaded by bad experiences in the past, I didn't have any expectations for a reply for at least a week. What happened next brought tears to my eyes.

Eleven minutes later, I received a response ~ the medical secretary thanked me for sending in my info and told me that she had already handed off the info to the powers that be in the office. She continued by saying that if I needed anything else to please call her. Some of you may be thinking,
"What's the big deal ~ there's nothing remarkable about her response!"

To me, her quick response and willingness to help me were like a warm embrace. I have been pitted up against so many rude, callused, inconsiderate, arrogant people recently I just turn into a puddle of tears when someone is nice to me. I replied back and let her know how much her kind words meant to me and she told me that they would be calling me soon with an update!

The art of practicing random acts of kindness still exist today ~ the woman I communicated with today didn't do anything special, but she was compassionate and I really appreciated it!

Into the Light ~ Bebo Norman

You could turn a hundred years and never empty all your fears
They’re pouring out like broken words and broken bones
They could fill a thousand pages, be the cry for all the ages
And the song for every soul who stands alone

The ache of life is more than you are able

Hold on love, don’t give up
Don’t close your eyes
The light is breaking through the night

Step out into the day, all the clouds and all the rain are gone
It’s over now
Step out into the sun, for you have only begun to know
What it’s all about
As the hungering dark gives way to the dawn, my love
It’s over now

Time will let the story told grow and grow ‘til it unfolds
In a way that even you cannot ignore
You can say the seasons change but never if you just remain
In a place where the freeze is at your door

What you don’t know is the signs are right for the turning tide

Hold on, hold on
It won’t be long
So hold on


Sunday, October 28, 2007

It All Comes Down to DNA

Distant ~ quiet ~ mulling things over ~ Sometimes I just need some time and space to think. The deadline for my second level appeal is coming up in a couple of weeks ~ I need to be prepared to present my case. The first time I appealed my request for out-of-network surgery, the door was slammed in my face. Thinking back ~ I am sure that the powers that be looked at my file ~ saw my request and quickly denied me. Their thoughts were ~ she needs a garden variety decompression and we have someone in-network who can do that for her. On the contrary, my case is not even in the same galaxy as the garden variety surgery! So now ~ I am digging deep within myself so that the information I present is convincing enough to get the green light to TCI.


I still remember a college professor's comments on one of my final history exams. He was completely blown away by my essays on the final and he was convinced that I was an English major. (In reality, I was probably using grandiose words to try to cover up the fact that I wasn't completely prepared for the exam!) Seriously, the man was moved to tears by my essay ~ we are talking about history here ~ not a romance novel. Anyway ~ my point is, apparently my writing can have that effect on people every now and then. So, I will attempt to 'move' the powers that be ~ to help them walk a mile in my shoes ~ to show them my point of view.


The outcome will be up to them, but I am clearly praying for nothing short of a MIRACLE! I am looking for the express train ~ the fast track to TCI. Meanwhile ~ I am in the process of getting an appointment with a geneticist so that I will have concrete, medical proof that I have Ehlers Danlos. Nothing in this process has been speedy. With that in mind, if I actually secure an appointment with this geneticist I will be lucky if I get an appointment any time soon. You see, they are scheduling appointments FOUR months out right now ~ you do the math ~ we are talking MARCH of 2008. So ~ all along, everything has been leading up to focus on the building blocks of life ~ DNA. I may find out more about myself from a geneticist that I ever wanted to know.

Thursday, October 25, 2007

Where Am I?

Between the now and the not yet ~ knowing and yet unsure ~ leaning forward and being held back by an indescribable force. Me, shaking my head (carefully, I might add as the brain tail doesn't like to be all shook up!)

How in the world did I get here again????

My head is spinning ~ true story ~ as I try to re-trace my steps ~ which doctor do I need to follow up with next? Did I already miss my deadline for my level 2 appeal? Is it time to step up to the plate and pay a visit to the Dept of Insurance? Feeling like I am losing touch with reality ~ so for my sanity ~ let me check the facts:

1. I have a Chiari Malformation herniated 11mm beyond where it should be

2. My insurance company won't allow out of network coverage

3. Chiari is a progressive condition and I am fearful of nerve damage while I wait for surgery

4. I officially have FIVE neurosurgeons ~ only one of them understands Chiari and the associated conditions completely and he's the one that I am not approved to see. He's the best of the best ~ the choice is clear ~ I just can't get there from here!


I have hit a huge roadblock ~ again ~ having trouble finding someone to do a test for Ehlers Danlos Syndrome ~ which, if proven ~ is the golden ticket to TCI. Today ~ I'm frustrated with the system ~ not feeling like I have any faith left ~ is there any clear way out of this???

Sunday, October 21, 2007

In Better Hands

I had heard this song a month ago and had stored it away with high hopes of posting it after I got a surgery date. But you see ~ I have come to realize, in light of the fact that my last appointment didn't go as I had planned, that I have been in better hands all along. I keep looking for someone to swoop in and take care of my brain and maybe I should change my focus ~ No matter how little I may understand the path that I am on ~ it's just where I need to be ~ nothing more, nothing less.

The Carter Family was on Extreme Makeover tonight ~ I was very pleased with how they told their story. They even snuck a picture of the brilliant surgeons at the Chiari Institute. If you missed it, you can go to the full episode player on the ABC website and watch it. I loved that the design team focused on the dreams of the family members and honored their love for music. Something I have realized in battling with Chiari on a daily basis is that I have to keep focusing on my dreams or the waves that my brain tail creates will overwhelm me.

Something that Julie Carter has been able to do is to is to help people find answers about Chiari and offer emotional support. She claims that she is somewhat obsessed with Chiari ~ in this case ~ he obsession has been turned into passion. Here is her testimonial and that of her daughter, Jade . I know that ever since I found out about my brain tail I have been obsessed with finding out all the info that I can about my condition. I love research and there is so much to learn about Chiari ~ the possibilities are endless. With that being said, I have a site meter on my blog ~ I installed it in July of this year ~ and I have been floored by the number of people reading my blog ~ Seriously ~ I probably only actually know a handful of you. I never imagined that people on the other side of the world would read about my life.

So ~ to my readers out there in the universe ~ I pray that you are finding some answers by reading about my Chiari journey and hopefully finding some inspiration ~ some thread of hope. Only a few of you have left comments on my blog ~ please don't be shy ~ I would love to hear from some more of you.


In Better Hands - Natalie Grant

It's hard to stand on shifting sand
It's hard to shine in the shadows of the night
You can't be free if you don't reach for help
You cant love if you don't love yourself

There is hope when my faith runs out
Cause I'm in better hands now

It's like the sun is shining when the rain is pouring down
It's like my soul is flying though my feet are on the ground
So take this heart of mine there's no doubt
I'm in better hands now

I am strong all because of you
I stand in awe of every mountain that you move
Oh I am changed, yesterday is gone
I am safe from this moment on

There's no fear when the night comes 'round
I'm in better hands now

It's like the sun is shining when the rain is pouring down
It's like my soul is flying though my feet are on the ground
So take this heart of mine there's no doubt
I'm in better hands now

It's like the sun is shining when the rain is pouring down
It's like my soul is flying though my feet are on the ground
Its like the world is silent though I know it isnt true
Its like the breath of Jesus is right here in this room

So take this heart of mine there's no doubt
I'm in better hands now
I'm in better hands now

Friday, October 19, 2007

Proud


Last weekend, both of my daughters competed in a cheerleading competition. In fact, my oldest daughter's team was awarded Grand Champions in their division and they are moving onto the next level ~ Regional Qualifiers in a couple of weeks. With all of drama of my brain tail going on, it has been a blessing and such a breath of fresh air to see the joy in my daughter's eyes as they are triumphing ~ winning!

Go Bison!

Thursday, October 18, 2007

One Step Closer

I don't even know where to begin ~ The picture above says it all ~ My visit with surgeon #5 didn't go as I planned in my mind ~ but then again ~ who am I trying to kid ~ this is me we are talking about. If the shortest distance between two lines is a straight line ~ my route has been the polar opposite of short and straight!

I don't want to bore you with all the details ~ so I will try to sum up what happened yesterday. With my mom and husband in tow ~ after waiting for over an hour past my appointment time ~ I met surgeon #5. Mine was the last appointment before his lunch break ~ he looked tired and weary. I tried to sum up what has been going on with me since my Chiari discovery ~ he was tough ~ I stood my ground ~ basically he agreed that I have a significant Chiari malformation and I would definitely benefit from surgery ~ however ~ the other diagnosis that TCI gave me ~ he wants to debunk all of them.

As he was talking and it was clear that we weren't on the same page ~ he even lauded surgeon #4 (the Godfather)! I felt a sinking feeling in the pit of my stomach. I fought the waves of emotion coming over me ~ I felt as if I was stuck in a revolving door ~ going around and around with no exit in sight! Then ~ I heard a small, still voice voice within myself ~
"This is all as it is supposed to be ~ stay strong ~ hold your ground ~ I will carry you."
So ~ is summation ~ the next step is to get medical ~ concrete evidence that I do in fact have ehlers danlos. I am trying to schedule an appointment with a rheumatologist ~ apparently they should be able to do some kind of skin test confirming EDS. I am 99.9% certain that I do have EDS ~ I have all the signs. If there is a silver lining in here somewhere ~ when I test positive for EDS ~ then surgeon #5 will write a letter recommending that I absolutely go to TCI for surgery ~ they are best equipped to deal with stability issues. This all takes me one step closer ~


One Step Closer ~ U2

I'm 'round the corner from anything that's real
I'm across the road from hope
I'm under the bridge in a rip tide
That's taken everything I call my own

One step closer to knowing
One step closer to knowing

I'm on an island in a busy intersection
I can't go forward now I can't turn back
Can't see the future
It's getting away from me
I just watch the tail lights glowing

One step closer to knowing
One step closer to knowing
One step closer to knowing
Knowing, knowing

I'm hanging out to dry
With my old clothes
Finger still red with the prick of an old rose
Well the heart that hurts
Is a heart that beats
Can you hear the drummer slowing?

One step closer to knowing
One step closer to knowing
One step closer to knowing
To knowing

One step closer to knowing
One step closer to knowing
One step closer to knowing
To knowing, to knowing