Made Up My Mind

I am all for the diminishing of FEAR ~ fear has the ability to literally drain the essence of life right out of me! So, with that said I made up my mind today and took a baby step of faith. I e-mailed TCI to see what's the next step I need to make to get the ball rolling to schedule surgery. I feel like until I have a surgery date this big black cloud is looming overhead ~ the brain tail is putting my whole life on hold ~ not to mention my family!


The facts are that by going ahead with the decompression I will be fighting back ~ not letting chiari direct my life. I understand that the decompression will help but might not completely heal me of my symptoms. I know there is no 'cure' for chiari yet ~ but I can't keep putting my life on hold.

I went on a long walk this afternoon after work and the song I posted below really spoke to me. Surprising ~ really ~ since I have had this song on my iPod for a couple of years. "Talk to the one who made you ~ talk to the one who understands ~ talk to the one who gave you the light in your eyes". What a simple message ~ so I took Sheryls' advice ~ asked God to orchestrate the details of brain surgery ~ His timing and not my agenda. I heard almost an audible laugh in response (I usually do when I 'surrender control' over to Him again and again!) I got the message that this speed bump in my life is necessary for perspective ~ but there is so much more work to be done here on Earth. ~sigh~

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

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 ~

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!

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.

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...

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.

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

CHORUS:
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

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

The Narrow Way

During my life journey, I have moments of feeling like the walls are closing in on me ~ much like this picture. There is only one way through ~ no where to turn ~ the walls are high on both sides. Extreme focus is needed to persevere. I don't particularly like these types of passages, but in the same breath, I know that they will pop up along the way. Press on ~ and keep moving!

Am I trying to hard? SERIOUSLY! Who spends time and energy pushing for spinal and brain surgery? Have I completely lost my freaking mind?? Yes, it's true my brain is sliding out of my head, but SERIOUSLY!! I had a good heart to heart talk with God last night ~ harsh words were exchanged on my part ~ I asked why my path is so unclear and rough right now? I asked him to make things a little more obvious so that I know that I am doing the right thing. His response:

"Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him and he will make your paths straight" ~ Proverbs 3:5-6

Hello ~ did I not mention ~ clarity is needed ~ this sounds like I have a lot to learn about 'trusting with all my heart'! So ~ my goal while I am on vacation is to cast my worries and concerns to the wind ~ be still and quiet ~ and renew my trust in the Lord.