Tuesday, July 21, 2009

You're Not Shaken

It's so easy to get through to the other side of the valley of the shadow of death 
and never look back.  I would love to just completely  erase 2008 from my mind, but then again, that was a HUGE part of my life journey. With each passing day I am in awe at my recovery ~ serious miracles have settled upon me. Look how far I have come in such a short time. 

As challenging as it was to endure brain surgery, I want to remember how lost, alone, afraid I felt at the time so I can empathize with other brain tails going through the same journey. Chiari will continue to rock my world ~ I will take all of it ~ the good and the bad. These lyrics really spoke to me when I heard them the first time ~ touched a memory from last year. The indescribable instinct of holding on and lifting my eyes towards the Lord, even when I didn't understand why me ~ brain surgery ~ how can this possibly be happening. To look back and see that strength that comes from trusting the Lord ~ as weak as I was in body ~ still not shaken. I hope these lyrics bring strength to some of you going through a similar journey. Hang in there! 

Phil Stacey - You're Not Shaken
From the album Into The Light

I am sinking in a river that is raging 
I am drowning, will I ever rise to breathe again 
I want to know why I just want to understand 
Will I ever know why 

How could this be from Your hand 
When every little thing that I have dreamed would be 
Just slips away like water through my hand 
And when it seems the walls of my belief are crashing down 

Like they're all made of sand 
I won't let go of You now, because I know You're not shaken 
I'm trembling in the darkness of my own fear 
All the questions with no answers still grip me while 

I'm here And I may never know why I may not understand 
But I will lift up my eyes And trust this is Your plan 
When I am in the valley of the shadow of death 
You're not shaken, You're not shaken 

You're right here beside me and 
You have never left 
You're not shaken, You're not shaken

Saturday, July 11, 2009

How Sweet It Is!

I have been remiss in blogging about my post-op TCI followup appointment I had back in May. Here's my latest Brain Tail photo ~ wow ~ they really did do something to my brain during my 7+ hour brain surgery! You can compare this one with the one on the side bar ~ notice all the extra room in there!

With that said, here's what the good docs at TCI had to say with the progress I have made since my decompression. First off, I am healing quite well and although not up to full strength yet, I am getting there faster than most patients. Also, most of my symptoms are completely gone except for the low barometric pressure headaches, which I am learning to deal with.

Now for the not so good news ~ I guess when you are facing brain surgery, the docs only focus on the task at hand instead of overwhelming you with your bleak lifetime outcome. Sigh ~ So, now that brain surgery is out of the way, I was told that I have degenerative disk disease and stenosis. Translation ~ I will probably be dealing with chronic pain in my body for the rest of my life. Sounds pretty bleak, but I am fighting this with every ounce of strength in my body.

I guess EDS is showing how destructive she can be ~ Honestly, I am so thankful to be alive, to have survived brain surgery, that everything else that may be just around the corner is cake. So I am focusing on increasing my bone density, working out and getting stronger. The bigger picture of living with CHIARI is coming into focus ~ it's a lifetime battle, but thank goodness I am not at risk of having a stroke or paralysis any more. All you brain tails out there ~ the sisterhood/brotherhood of the traveling brain tails make traveling on this crazy journey so much sweeter. 

Thursday, July 9, 2009

10,000 Miles

What is it about this song that is so mournful and bittersweet ~ this melody expresses my mood today as I remember my brother, Trey's, birthday. Sneaks up on me every year. You know, I don't actually even recall one memory of one of Trey's birthdays ~ but I do vividly remember the way it felt when he wrapped his arms around me and hugged me like he was never going to let go. So many years have passed since his passing and yet it still feels like he's just gone for a while ~ I know we will be together again, one day.