The Words I Would Say

What would I say? Be strong in the Lord ~ Never give up faith ~ You are going to do great things ~ God's got his hand on you so don't live your life in fear ~ Come find peace in the Father

My heart feels the pain and the weight of the world. This blog had brought me so many brain tail friends, all in different parts of their Chiari journey. It's so easy to be completely consumed by pain and fear ~ I wanted to share this song with you ~ in hopes that it gives you hope where you haven't found any.

Just Breathe

Sometimes, a little reminder goes a long way. This time each year I feel the pull of the vortex of activities looming just ahead. School projects, assignments, cheer practices, football games, homework, cheer competitions(GO BISON!) , birthdays, anniversaries. Although, this year is different ~ I don't have a brain surgery scheduled for December this year. I think I am going to achieve my goal this year to stay out of all operating rooms in 2009!

Even with the stress that comes with school starting up again, I feel like an enormous load has been lifted off my shoulders. I passed my Microsoft SQL Server 2005 exam a couple of weeks ago so now I have tons of brain cells freed up for mindless movie/TV trivia! I am looking forward to the season premieres in the upcoming weeks: Grey's Anatomy, Private Practice, Fringe, Castle, Brothers and Sisters, Medium, The Office, Flash Forward, Heroes, Biggest Looser... time to make room on the DVR.

I hope to blog more this month ~ there's lots to say, just not feeling inspired at the present moment. There's lots to say about my brain tail ~ still putting up a good fight in my head, stay tuned for more details on that soon. I am sure the blog drought will end soon. In the spirit of story telling, please leave me a comment to request a blog subject you'd like me to write about.

Oh yeah ~ and one more thing ~ don't forget to breathe ~

Having One of Those Days

Today was a day when I wanted to cover my eyes and make the world just disappear ~ transporting me to another time and place. Where is that FRINGE elevator anyway? Mondays are hard for most people, but when you heap on an extra helping of stress first thing in the morning it makes getting through the day all the more challenging.

Even with heavy laden shoulders, there were bits and pieces of great news that I received ~ A month after I mailed a package off to a friend doing tribal mission work over seas, the package finally arrived. Must have gone via yak train ~ and the best part was that all the contents arrived with no pilfering. In an age of instant messaging, twittering (still haven't found a need to twitter my life away even though I have had a Twitter account for a year now), texting and emails it's reassuring to know that the postal system still works!  

Also ~ in a day and age when people with extensive medical issues (like me) face mountains of  medical bills to pay and frequent surly letters from insurance companies ~ I actually received a CHECK from my hospital ~ refunding money to me for paying too much ~ SERIOUSLY? So ~ a lil bit of good news has presently lifted my spirits enough to muster up enough strength in my completely drained body to get out there and coach cheerleading for 2 hours tonight.

PAIN Is Weakness Leaving the Body

Pain is Weakness Leaving Your Body - Nietzsche

Brain surgery isn't 100% successful ~ I knew the odds going into my decompression. Honestly, I didn't expect a 100% recovery.  After all, I still have cranial settling ~ I can't remember the exact weight it took to lift my head off my spine before I felt relief during my invasive cervical traction, but it was over 20lbs.  Coming to terms with the fact that my brain tail will always be with me is a tough fact to digest.

I'm not sharing this with you in any way to get the sympathy vote ~ just sharing what's on my heart. Yesterday I woke up feeling like I had been mowed over by a dump truck ~ an all familiar feeling that I hadn't felt really since my surgery. As I was waiting for the effects of my first cup of coffee to take effect I made a mental note ~ warning alarms going off in my mine ~ this just might be one of those days when a chiari headache totally hijacks my body. So later in the day when I could feel that fullness feeling at the base of my head I knew it would only be a matter of hours before I had to lie down in a dark/quiet room. 

Believe me, I fought the headache with every ounce of energy. I sufficiently hydrated myself, tried not to bend over at all, no cardio workouts ~ I mostly spent most of the day doing a thousand loads of the girl's camp laundry. Then, around suppertime, in the middle of preparing dinner, I suddenly had to stop what I was doing and lay down on the couch. The nausea had set in and the pounding in my head reduced me to tears. An hour after I had taken my high powered migraine meds the headache was still going strong, so I decided to throw in the towel and go to be for this night.  

I am praying that these types of episodes will be few and far between.  More than anything, it's just so discouraging to know that brain surgery hasn't made me exempt to chiari headaches. *sigh* .  With that said ~ I truck load of weakness left my body yesterday ~ looking forward to a stronger me in the upcoming days. There is no cure for chiari yet ~ keeping the faith for a cure/procedure to rid all of us chiarians from headaches for life! 

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

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. 

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.

First Encounter Sunset

For I know the plans I have for you,' declares the LORD, 'plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart.

Jeremiah 29:11-13

I took this picture a couple of years ago while on the First Encounter beach at sunset ~ I am in awe of the sunsets that our creator paints for us! What a gentle reminder to keep making plans for the future ~ as long as I am breathing and still on this planet I know that He has plans for me ~

Keeping the Faith

I am reading Dan Brown's Angels and Demons and I just came across a brilliantly written paragraph about terror. In light of the TCI ongoing investigation this really hit home and explains the ripple effect of terror.

"'Terrorism', the professor had lectured, 'has a singular goal. What is it?' ...'To cause terror?'
'Concisely put. Quite simply, the goal of terrorism is to create terror and fear. Fear undermines faith in the establishment. It weakens the enemy from within...causing unrest in the masses. Write this down. Terrorism is not an expression of rage. Terrorism is a political weapon. Remove a government's facade of infallibility, and you remove it's people's faith.' Loss of faith..."

Life continues to teach me many hard lessons ~ some numerous times ~ life is hard ~ the good guys don't always win ~ nothing is fair ~ pain comes from living a full life ~ there is good and evil in all situations. I thought that maybe after surviving brain surgery that I would be exempt from anymore hardships ~ clearly I had a delusional moment ~ but it's OK ~ I still have a lot of living to do and a lot to learn.

This post might seem a little cryptic, but I am sorting out something in my head. I have really had to sit and simmer for a while ~ remove myself from an emotional tornado ~ the mama bear in me wants to spring forth and play the protector. Faith has been completely shattered for many and getting that trust back is a slow and long process. I am so thankful that I am where I am in my chiari journey so that I have a clarity that comes from stepping out in faith and entrusting my life to brilliant neurosurgeons.

~Sigh~ How do I find the strength to continue to do my part to infuse the chiari community with a renewed hope and faith in surgeons who heal? One breath at a time ~ one baby step at a time. Living with Chiari is a moment by moment struggle ~ a lifelong battle ~ but there is so much more to life than living and dying. As long as I am breathing I will continue to encourage those of you who need someone to cheer you along in your journey ~ you are never alone! Finding joy and a peace that passes all understanding ~

If You Want Me To - Ginny Owens

Medium

Medium is one of my favorite shows ~ last night's season finale really got my attention when the episode focused on Allison's deteriorating mental/physical health. **SPOILER ALERT** Allison collapsed at the office one day and when they ran some tests on her they found a rapidly growing tumor on her brain stem. Ooo MRI's of Allison's brain ~ I perked right up straining to see if she has a brain tail. Do any other loyal viewers out there remember a Medium episode early on in the series where it was found that Allison and all three of her girls share the same type of brain malformation? It's been driving me nuts, because I can't recall what they found but my hunch is it has something to do with chiari.

Anyway ~ the doctor was discussing surgical options with Allison and her prognosis with the newly found tumor in her brain. They must operate immediately as the tumor was growing fast and if they didn't operate and take it out it would cause her brain to herniate ~ GASP! The doctor went on to explain the urgency of the need for surgery as herniation of the brain can cause paralysis even death! GASP again ~ I wish I had found her doc when I was diagnosed with my brain tail. It seems that the local docs don't think a brain herniation of 17mm is anything that serious!

Here's a question for you brain tails out there ~ has having a brain tail made you more extra sensitive to things that are unseen ~ thoughts that are not spoken? I completely identify with Allison from Medium ~ not to that degree, but it can really make me feel like I am not from this planet sometimes. Maybe it's the hernation or the extra room now in the back of my head that makes me more sensitive ~ thoughts ~ anyone?