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

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

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 ~

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!

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

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

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

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.

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!

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."

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!

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

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.

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!

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 ~

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!