You Have Such A Greater Perspective

Waiting ~ hoping for an answer ~ my answer, but knowing that the Lord has a better perspective of HIS plan for my life ~

The Waiting Room ~ Jonny Diaz

HERE IN THIS WAITING ROOM YEARNING FOR YOU TO SAY GO
AND THOUGH I’M CONVINCED THAT A YES WOULD BE BEST
THIS TIME YOU’RE TELLING ME NO

IT’S NOT THAT I DON’T HAVE AN ANSWER
IT’S JUST NOT THE ONE THAT I’D LIKE
BUT THROUGH THIS TIME LORD I MUST KEEP IN MIND
YOU’RE ALWAYS WISER THAN I

YOU HAVE A MUCH BETTER PURPOSE
AND YOU HAVE A FAR GREATER PLAN
AND YOU HAVE A BIGGER PERSPECTIVE
CAUSE YOU HOLD THIS WORLD IN YOUR HANDS

THE THINGS THAT I SEEK ARE FROM YOU
LIKE THE STRONG HEALING TOUCH OF YOUR HAND
BUT WHEN YOU SAY NO HELP ME TRUST EVEN THOUGH
THERE’S A REASON I CAN’T UNDERSTAND

WHEN THAT MIRACLE COMES CAUSE YOUR ANSWER IS YES
I WILL PRAISE YOU FOR ALL OF MY DAYS
BUT WHEN YOUR WISDOM DECLARES THAT A NO IS BEST
I WILL PRAISE YOU JUST THE SAME

Finding Clarity Through the Fog

I was driving into work this morning at 6am. It was still a little dark outside and the river road I drive on was shrouded in fog. What images/thoughts come to mind when you think of fog? Does it bring up feelings of fear or dread? For me, I feel energized and inspired by fog ~ I don’t know where the feelings come from ~ but hear me out.

As I was driving along, the imagery of a foggy road actually shed some light on a dark place in my heart. I think of life lessons in parables ~ when you can’t see the way, slow down, be on alert, follow the lines, and use your low beams. Even though putting on your high beams might seem like a good idea ~ yeah ~ more light means I can see better ~ wrong ~ the high beams make the light reflect right back in your eyes and then you can’t see at all.

*Sigh* ~ message heard loud and clear. I’m not going to know what’s just around the next corner and that’s just as it should be. Follow the lines on the road (the truth in scriptures) and enjoy the experience of traveling through a cloud! Just ignore the fact that the brain fog has totally taken over...

The Ball Is In My Court

The past several days have been a whirlwind and I apologize for not blogging sooner. Last Saturday we drove down to Brooklyn to celebrate my nephew's first birthday. After a long day of fun we drove back home and then packed bags and headed back to Brooklyn on Sunday afternoon.

Monday morning began with an hour spent in a MRI machine to get a look at my brain tail. We had seven hours to kill until my neurologist appointment at TCI, so we looked on the map and found a state park nearby. The sun was shining and it was a good day to spend some time outside. We picked up some sandwiches for lunch and headed over to the park. After a little hike in the woods and a brief encounter with a ribbon snake we ate lunch and enjoyed the day for a while.

Then we headed over to TCI and waited and waited for our appointment. So the verdict on my health ~ I am healing up nicely from the tethered cord surgery. I can expect about a year until my back feels 100% again. As far as my MRI films go, my herniation now is about at 12mm ~ which according to my calculation is 2 mm more than it was last April. I am still shocked when I look at the MRI scans of my chiari ~ there is brain matter stuffed into my spinal column like a tightly fitting cork ~ it's just not right ~ it shouldn't be there! My brain stem measurements had decreased a bit which is great news and probably the reason why a lot of my symptoms, especially vertigo, have vanished.

So what's the prognosis for a decompression surgery? Well, basically the ball is in my court. I am definitely a candidate for surgery, but it's my decision when to have it done. (Is there ever a 'good' time to have brain surgery???) I should feel tremendous relief, but I don't. Why? I am still experiencing crushing Chiari headaches, blurred vision, my neck is still popping and cracking when I look from side to side. So I guess I have resolved myself to waiting ~ wait and see what happens. I don't understand why I have come this far with my struggle to have it fizzle out at the end. I am completely prepared for brain surgery but for reasons beyond my comprehension it's not in God's plans for my life right now. ~sigh~

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

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

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.

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???

I've Been Invited to Believe the Unbelievable

I was blindsided by the lyrics of this song last night as I drove home from my meeting at church. This song came out around the time we made the pilgrimage across the country to put roots down in New York. How easy it is for me to forget how awesome my God is ~ He does the unbelievable ~ the inconceivable!! I am deeply humbled and grasp at finding a better perspective on my situation. A lot is riding on my appointment with surgeon #5 tomorrow!

A blanket of peace has covered me ~ I have already been spoken for ~ my mission here on earth is in it's infancy ~ there is much more to be done. So, whatever may come, I have peace that all is as it is supposed to be.

Great Expectations ~ Steven Curtis Chapman

The morning finds me here at heaven's door
A place I've been so many times before
Familiar thoughts and phrases start to flow
And carry me to places that I know so well
But dare I go where I don't understand
And do I dare remember where I am
I stand before the great eternal throne
The one that God Himself is seated on
And I, I've been invited as a son
Oh I, I've been invited to come and...

Believe the unbelievable
Receive the inconceivable
And see beyond my wildest imagination
Lord, I come with great expectations

So wake the hope that slumbers in my soul
Stir the fire inside and make it glow
I'm trusting in a love that has no end
The Savior of this world has called me friend
And I, I've been invited with the Son
Oh I, I've been invited to come and...

We've been invited with the Son
And we've been invited to come and...

Believe the unbelievable
Receive the inconceivable
And see beyond our wildest imagination
Lord, we come with great expectations

Miss You Like Crazy

We all have brain farts ~ it's our human nature ~ we have become avid multi-taskers. The result of this is a little short circuiting every now and then. Some go so far as to boast about how many tasks they can do at once ~ think The Cat In the Hat. That used to be me prior to my brain tail taking up residence in my spinal cord!

I digress ~ They say a mind is a terrible thing to waste ~

An 80 year old couple were having problems remembering things, so they
decided to go to their doctor to get checked out to make sure nothing was wrong
with them. When they arrived at the doctor's, they explained to the doctor about
the problems they were having with their memory.

After checking the couple out, the doctor tells them that they were
physically okay, but might want to start writing things down and make notes to
help them remember things. The couple thanked the doctor and left. Later
that night while watching TV, the old man got up from his chair and his wife
asks, "Where are you going?"
He replies, "To the kitchen."
She asks, "Will you get me a bowl of ice cream?"
He replies, "Sure."
She then asks him, "Don't you think you should write it down so you can
remember it?"
He says, "No, I can remember that."
She then says, "Well I also would like some strawberries on top. You had
better write that down cause I know you'll forget that."
He says, "I can remember that, you want a bowl of ice cream with
strawberries."
She replies, "Well I also would like whipped cream on top. I know you will
forget that so you better write it down."
With irritation in his voice, he says, "I don't need to write that down I can remember that." He then fumes into the kitchen. After about 20 minutes he returns from the kitchen and hands her a plate of bacon and eggs.
She stares at the plate for a moment and says, "You forgot my toast."

The sad thing about this story is that I totally identify ~ makes me feel like I should be in a padded room when I can't remember a thought I had just 2 minutes ago ~ what was my point? I know I had one? What I can't wrap my mind around is how devastating Chiari has been on my mind ~ seriously ~ I wish I was joking!

Brain Tail Discovery Day

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

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

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

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

DOH!

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.