In a world where we are bombarded with tragic news stories on a daily basis, I like to check out the Wonderful World News. This story is great ~ an immediate answer to prayer ~ don't you just love God's sense of humor!Learning how to live life with my Brain Tail in tow ~ Detethered on 2/1/08 ~ Decompressed on 12/3/08. Finding humor in the valley of the shadow ~
Thursday, May 22, 2008
Wonderful World News ~ Pilot's prayers answered by Jesus sign
In a world where we are bombarded with tragic news stories on a daily basis, I like to check out the Wonderful World News. This story is great ~ an immediate answer to prayer ~ don't you just love God's sense of humor!Tuesday, February 19, 2008
One and Two Weeks Post Op
Just in case you are not quite sure what you are looking at, the photos are of my mid and lower back. Even after all the links and lengthy info regarding the surgery many of you still thought that the surgery site was in my neck ~ true story! I am amazed how the detethering has alleviated almost all of my symptoms ~ and I am still in awe of the brilliance of the TCI docs. My next step is figuring out how to tactfully write a letter to my four local neuro-surgeons to let them know the outcome of my surgery. Mostly I want to educate them on the correlation between the tethered spine and the brain so that other Chiarians like me might avoid brain surgery!
I am still trying to ease into the whole 'recovery ' mode of resting and relaxing. I am off all pain/muscle relaxant meds and yet every night I am having these uber intense dreams with intricate and complex plots. I wake up exhausted from my dream journeys. At first I attributed the dreams to the Morphine ~ but now that I am not taking it anymore I am perplexed. Maybe since my brain tail has plenty of CSF it's going into overdrive ~ anyone out there have similar experiences?
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 ~
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
Wednesday, September 5, 2007
Leap of Faith
I can't help but see Indiana Jones when I hear the term "Leap of Faith" ~ don't you agree?!?
Friday, August 24, 2007
Compassion
Compassion: sympathetic consciousness of others' distress together with a desire to alleviate it
Compassion is a feeling deep within ourselves —a "quivering of the heart" — and it is also a way of acting — being affected by the suffering of others and moving on their behalf.
"Compassion is not sentiment but is making justice and doing works of mercy. Compassion is not a moral commandment but a flow and overflow of the fullest human and divine energies." --Matthew Fox
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I went to my doctor's appointment this morning with a sense of peace ~ to HIM, the future is already history ~ This is my journey, but I won't be given more than I can handle ~ it's not going to be easy ~ I knew that when I committed to letting Jesus direct my life. Sometimes I get so distracted and loose site of the steady horizon.
Second opinion surgeon came into the exam room, looked my in the eye, and asked me what I needed for him to do so that I could go ahead and get my surgeries taken care of. He told me he doesn't do the tethered cord surgery, but said that he would write a good letter stating that TCI needed to take care of all of my surgeries. He totally understands the connection between the brain and the spine and he reiterated that I need to go ahead and get this taken care of, NOW! He told me he was going to write 2 separate letters for me, one for the decompression and one for TC. They will be ready for me to pick them up next week.
What an answered prayer ~ and thank God for a compassionate doctor!
I fight to find the way to go
Every day opens a different door
Every dream shadows the one before
But slowly I can see the way You've made for me
[Chorus:]
Straight ahead I can see your light
Straight ahead through the dark
Straight ahead there's no left or right
Straight ahead to your heart
Carry on through the night
When the road is hard to find
Lying lights tell me to turn around
Lying thoughts tell me I'm lost not found
But feeling I can see You're waiting there for me
[Chorus]
Thursday, August 2, 2007
Miracle Of The Moment
You've heard me say it a thousand times ~ but I'm going to say it again ~ MUSIC INSPIRES ME ~ I heard a new song this morning that really spoke to my heart ~ I wanted to share it with you. Click here (Play SCC's New Song) to hear the song. Just when I thought that there couldn't possibly be a new song out there that would resonate with me ~ a breath of fresh air appears and breathes hope into my life, again.It's time for letting go
All of our "if onlies"
For 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 come 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 (here and now)
It's right there in front of you
And I don't want you to miss the miracle
Of the moment