Saturday, April 27, 2013

My Chiari Saturday--

This is a pretty cool diagram of what surgery is..I borrowed it from Maritza's All About the Brain Chiari Awareness and Education page on Facebook.

We are fortunate that our brain surgeries are minimally invasive and there is no Dr. McDreamy digging around in our frontal lobes. That being said..the surgery does affect our entire brain due to the rearrangement of CSF and our brain moving and changing to fill up its new space. One analogy is that of a dry sponge having water added to it.  Our poor, dehydrated, shriveled brains have new life (or CSF) breathed (or poured)..or forced into them.  Our brains resist the change.  We all resist change..why should our brains be any different?  Once our brain has adjusted..then our bodies must adjust. For years we have postured ourselves to accommodate this silent birth defect, so now, our heads, necks, spines.shoulders, jaws, backs, hips, etc all have to realign, regroup and relearn.

I'm in my 4th post op month..and where it's better in many many's worse in others. I fear I will never be able to work as I once did. Pain is my constant friend. I have much joy, I also have much sadness. I am tired of this.  Then, I feel guilty for feeling that way. I could have a terminal illness. (I should be careful about that term, as of late, I've read 4 obituaries about Chiari-related deaths...that's pretty darn terminal)...but you know what I mean.  I should be more grateful.  I purpose each day to be more grateful..I generally wake with much enthusiasm, then turn into a bobble head before noon.  Very frustrating.

Today..I awoke to muscle spasms..Tense, tight, ridiculously uncomfortable.  My muscles are simply angry with me. I'm talking to them in my sweetest voice, "C'mon guys..can't we all work together?"
They ignore rebellious teenagers refusing to turn down blaring music.  So I go out in the back yard...and yell at them (in the infamous words of Rodney King), "CAN'T WE ALL JUST GET ALONG????"    I get no response..So, I fix my cup of coffee with French Vanilla Coconut Milk creamer (I've read muscles like coconut milk)...settle into bed with my laptop..and write it out. I'm contemplating heat, a Valium, and maybe a call to Neil..if he's in the office this morning..I'm sure he'll let me go to the torture table.  I'm awaiting the arrival of my new Fast Relief cream and pills from Plexus as they are supposed to be just the thing to show Valium the door. 

And so I wait, and I pray..and no relief.  I look back over the surgical procedure diagram for reassurance that this is supposed to hurt..that it's not in my head (no pun intended)..and I try to relax.

Can you feel me relaxing?...I'm taking long pauses in writing, deep breathing..relaxing my arms, my head (still using my "monkeydog" pillow that Tami gave's wonderful) Right now I want to get out my copy of Eat, Pray, Love by Elizabeth Gilbert..not that I want to go to an ashram in India and practice the Hindu's just this one chapter she wrote on meditation..on how she conquered her body's resistance to total relaxation, relaxing her mind and quieting her spirit...just being.  I love Ms. Gilbert's style of writing, I don't agree with all of her beliefs, but this chapter spoke to me. I think of Psalm 46:10: "Be still and know that I am God" (NIV)...since I can't be still...I cross reference it with my parallel online Bible.
This is what I get:  "Be still, calm and know that I am the True God.." (The Voice)
                               "Cease striving and know that I am God..." (NASB)
                               "Let go of your concerns! Then you will know that I am God!" (GW)
                               "Stop fighting" , He says, "And know that I am God" (GNT)
That one gets me..."stop fighting". Am I to just give in to the process? A still, small voice whispers inside of me, "Yes--I've got this..."   And honestly, a peace floods over me.
So I'll close with that peace, with my coffee and coconut milk and my monkey in the silence of the house..because aside from the struggle and the pain..above all else--I do know that He is God! And..that my friends, is enough!

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