Brain Injury

In light of a disturbing article I read today about a woman who complained of headaches for a very long time ~ she was constantly dismissed ~ then she passed away ~ I looked into the definition of a brain injury. I feel like I have been on the sidelines for a while now, neglecting my blog and my readers and I am trying to get back in the groove and post some helpful info out there on the web. Here's a good link for symptoms of a brain injury broken down by parts of the brain. This is the piece that really grabbed me:

Brain Stem: deep within the brain

•Decreased vital capacity in breathing, important for speech.
•Swallowing food and water (Dysphagia).
•Difficulty with organization/perception of the environment.
•Problems with balance and movement.
•Dizziness and nausea (Vertigo).
•Sleeping difficulties (Insomnia, sleep apnea).

Cerebellum: base of the skull

•Loss of ability to coordinate fine movements.
•Loss of ability to walk.
•Inability to reach out and grab objects.
•Tremors.
•Dizziness (Vertigo).
•Slurred Speech (Scanning Speech).
•Inability to make rapid movements.

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Seriously, I think it's safe to say that many of those still apply to me. I still have to remind myself daily that I have a serious brain malformation that caused irreversible damage/injury to my brain, and with high intercranial pressure and cranial settling, it continues to server up good doses of pain and destruction. Seems like the brain stem is really stressed out by the cranial settling ~ all I can do is wait for my bones to dense up ~ is that even really a word??? get more dense, that's better.

I am thrilled that Chiari is making the headlines more and more ~ the general public is getting an education on Chiari Malformations, but the stories are breaking my heart! Please, if you or someone you love is complaining of constant headaches, encourage them to find a doc who will give them so concrete answers.

Beautiful Mess

Sure, who doesn't embrace smiles and that feeling you get when everything is going your way. Don't you wish everyday could feel that way? For those of us who have chosen the path as the encourager ~ the cheerleader ~ they tell you that you still have enough energy to get to the finish line ~ they pick you up when you can't stand on your own ~ What do we do when we aren't having a good day? Is it ok to sulk and cry? Absolutely!

It's ok to let the Lord know you are having a crummy day ~ of course He already knows how you feel, but I think He gets pleasure out of hearing us share with Him how we feel. When we are weak He give us strength. I heard this song today and these verses really resonated in my heart:

We pour out our miseries
God just hears a melody
Beautiful the mess we are
The honest cries of breaking hearts
Are better than a Hallelujah.

A great reminder to me to be in the moment ~ feel what I am feeling ~ and be ok with it. Today, admist vertigo and headaches, I am trying to find a way to rejoice in the fact that I am alive ~ to feel this discomfort is to be human. :)

Embrace

How do I make peace with someone who is constantly betraying me? Just when I think we can be friends and work together in harmony ~ SHARK FARTS ~ there she goes and does it again!!! I continue to be disappointed, over and over again. How long am I willing to put up with trying to rely on someone who isn't dependable anymore?

I am sure by now you are wondering ~ who is she talking about and why is she still friends with this person ~ right? This has to be the most challenging relationship I have been in and it's a lifelong bond. Believe me, if I could take a vacation from my brain, even for an hour or two, I totally would!

I haven't blogged in a while and don't want this post to seem completely a downer ~ so let me go over the facts first:

1. I have a Chiari Malformation of which there is no cure (not yet...)
   
2. I had two surgeries in 2008 to put a halt to the progress of irreversible neurological damage caused by a kinked brain stem and my brain hanging out in my spinal column
3. I have cranial settling and need fusion surgery, but am battling osteopenia to strengthen my bones enough so that I can eventually get the fusion surgery
4. When I was released from the hospital after my brain surgery, my brain surgeon gave me this piece of advice. What ever you do ~ don't get in a car accident!
5. My car was rear-ended about a month ago when I was sitting at a red light.
6. Headaches and vertigo have moved in again

So you'll find me somewhere in the middle ~ again. I don't know how this keeps happening, but just when I think I have moved out of the middle, I find myself caught here again. I am certain that I don't want to go back and it's unclear where the next path is. This might explain why my blog has been quiet for quite a while sometime. If you look at the big picture, I am a poster child for successful tethered cord and decompression surgeries. I healed beautifully and gleefully went back to work within 2 months. My quality of life has greatly improved ~ some days I almost feel 'normal'.

Then I have a day like today when it's all I can do to keep from retreating to the bedroom, close the blinds and climb under the covers ~ praying that sleep will wash away the headaches. But I press on ~ I have a physical therapy session for upper body strength and balance in an hour. Maybe after that I can take my heavy duty pain meds...But this is only a temporary fix. What does this mean long term? Do I wait until December ~ see if my bone density increased ~ then what? Do I schedule a fusion surgery for the spring? If I get the fusion done will it actually help my headaches or make them worse?

So at this point ~ I am going in the direction of welcomed distractions ~ send them my way ~ please! One day at a time ~ I keep setting mini goals and keep putting things in my calendar so that I have many things to look forward to. Honestly, the best medicine for me right now is time with friends ~ laughter is a wonderful cure. Now, can we bottle that up and cure chiari with it????

***What's up with the zebra you ask? Well if u look at a zebra it's pretty much a horse ~ except for the stripes. Chiarians are kinda like Medical Zebras .

Healing Hands of God

My eyes have been opened again by the lyrics of another song. Healing is an organic process ~ it ebbs and flows; but I haven't thought about this question in a while: Do you want to be healed? YES YES YES a thousand times ~ YES! I have to reach out and receive the healing hands of God.

Next comes the tricky part ~ what parts of my life need healing? Well the obvious in the physical ~ next comes the emotional piece. As the healing process moves forward, more layers are peeled back and more brokenness is revealed.

Just the other day I was chatting with a chiari friend of mine. We have never met in person, but I felt an instant sisterhood with a woman who has decided to take a leap of faith and schedule her decompression surgery this month. I am so blessed to have two surgeries behind me and have gained immense perspective on the big picture of living as a Chiarian. I love being able to share my chiari journey and encourage those along the way. I don't have all the answers, but I do know that putting everything in God's hands ~ deep breath ~ makes it a little bit easier to survive each day. I am greatly encouraged by the faith of those around me who continue to let the Lord guide their life!

How are you encouraged? We all have our responsibilities ~ we have jobs to go to, bills to pay, meetings to attend, relationships take time and energy. In a perfect world I would make a living helping other Chiarians get through life, especially the difficult days. Life can seem utterly impossible some days ~ I know, I have those days, still. although they are fewer and farther between now. I encourage you to keep in touch with your friends and let them know that they are not alone. Together, we can make this Chiari journey an adventure ~ may you be renewed today with the hope that one day, there will be a cure for Chiari

Healing Hand Of God ~ Jeremy Camp

I have seen the many faces,

I fear in the pain.

I have watched the tears fall plenty,

From heart ache and strength.

So if life's journey,

Has you weary and afraid.

There's rest in the shadow of his wings.

I have walked through the valleys,

The mountains and plains.

I have held the hand of freedom,

It washes all my stains.

If you feel the weight of many trials,

And burdens from this world.

There's freedom in the shelter of the Lord.

Chorus:

I have seen,

The healing hand of God,

Reaching out and mending broken hearts.

Taste and see the fullness of His peace,

And hold on to what's being held out.

The healing hand of God.

I have touched the scars upon His hands,

To see if they were real.

He has walked the road before me,

He knows just how I feel.

When you feel there is not anyone,

Who understands your pain,

Just remember all of Jesus' suffering.

(Chorus)

Cast all your cares on Him,

For He cares for you.

He's near to the broken and confused.

By His stripes,

Our spirit is renewed.

So enter in the joy prepared for you.

(Chorus)

The healing hand of God (x2)

And hold on to what's being held out (x2)

The healing hand of God

Oh Oh Oh Oh

Brain Tail Comparison ~ One Year Post Decompression

Sorry I have been remiss in posting about my one year post decompression doc appt that I had back on 1/29/10. I have attached MRI photos of my brain ~ the one on top is the current one and the one on the bottom was taken when I had a herniation of 17mm back in September of 2006. There's a tiny bit of cerebellar herniation but not enough to write home about ~ I love the proof that they actually removed my top vertebrae and a big chunk of my skull and you can clearly see it in the image.

This past visit with my neurosurgeon was not very highly anticipated ~ in fact it was quite the bitter pill to swallow. So here's the positives first:

• I am doing well enough to hold down a full time job


• I am functioning at a pretty high level


• I can care for myself without needing any assistance

And here's the rest of the story:

• My neurological functioning has actually deteriorated a bit since May of 2009 ~ I flat out failed a couple of my neuro tests that day. You know the one where you stand with your feet together ~ hold your arms straight out in front of you and close you eyes ~ well I immediately fell backwards.


• Failed to walk heal to toe without falling off the invisible tight rope


• Confirmed that I have stenosis


• Confirmed that I have degenerative disk disease and will probably need disk replacement in my back at some time in the future


• Chiari headaches are more frequent again


• Vertigo is back with a vengeance


• Don't forget the brain fog from hell

With that said ~ I have finally surrendered to modern medicine and am committed to taking Diamox to see if it will get my chiari headaches under control. ~ SIGH~

I have mixed feelings about my condition ~ yes, I have Chiari and even with two major surgeries ~ to prevent any further neurological damage I still have symptoms. I am learning to be at peace with this ~ enjoying the days that I feel good and to not be so hard on myself when I feel like I've been run over by a really big honkin truck!

Fingerprints of God

My oldest daughter, Hannah, turns TWELVE today ~ it seems like only yesterday when she came into this world. Just the fact that I have been chosen to be a mother is a miracle! You see, my doctors had told me for years prior to my pregnancy that getting pregnant would be close to impossible. I had a miscarriage prior to Hannah, John and I were completely devastated! How could I possibly bear to hope again. Then it happened...

I was driving home from work on an ordinary day ~ the radio was on and I was going over a list of things to do in my mind ~ then I heard a voice. The voice said in a firm but loving voice ~

"You are pregnant ~ do you believe?"

Thinking I was hearing things, I turned off the radio and listened..again, I heard the same question,

"You are pregnant ~ do you believe?"

Steadying my voice, I said out loud ~

"I BELIEVE!"

Then I laughed out loud ~ What an awesome God ~ knowing that I was brokenhearted He had sent one of his messengers to deliver the good news to me. To test my faith even more, a couple of weeks later when it came time to take a pregnancy test ~ it was NEGATIVE. I smiled and replayed the voice in my head ~ Do you believe? Of course I do! The next month, when I had a positive test and a visit from my doc I found out that I was indeed NINE weeks pregnant already.

The song below is dedicated to Hannah ~ from the very second I learned that I would be her mom, I knew that she would be covered with the fingerprints of God.

Fingerprints of God ~ Steven Curtis Chapman

I can see the tears filling your eyes
And I know where they're coming from
They're coming from a heart that's broken in two
By what you don't see
The person in the mirror
Doesn't look like a magazine
Oh but when I look at you
It's clear to me

That I can see the fingerprints of God
When I look at you
I can see the fingerprints of God
And I know it's true
You're a masterpiece that all creation
Quietly applauds
And you're covered with
The fingerprints of God

Never has there been and never again
Will there be another you
Fashioned by God's hand and perfectly planned
To be just who you are
And what He's been creating
Since the first beat of your heart
Is a living, breathing
Priceless work of art

And I can see the fingerprints of God
When I look at you
I can see the fingerprints of God
And I know it's true
You're a masterpiece that all creation
Quietly applauds
And you're covered with
The fingerprints of God

Just look at you
You're a wonder in the making
And God's not through
In fact, He's just getting started!

Learn Something New Each Day

Just when you thought you knew everything ~

Life Is So Much More Than What Your Eyes Are Seeing

I believe Christmas is a time for miracles, love and unexplainable happiness. If this is true, how come I hear stories of hearts breaking, hopes dashed, fears realized? Pain and despair are all around us ~ if not directly going on in our lives, chances are that we have a friend or family member who is in the fight of their life.

I know that I alone can't take away any of these trials, as much as I would love to wash it all away. But there's always hope ~ I encourage anyone reading this post to share the message of hope ~ of faith ~ What can faith do in your life?

WHAT FAITH CAN DO ~ KUTLESS
Everybody falls sometimes
Gotta find the strength to rise
From the ashes and make a new beginning
Anyone can feel the ache
You think it’s more than you can take
But you are stronger, stronger than you know
Don’t you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do

It doesn’t matter what you’ve heard
Impossible is not a word
It’s just a reason for someone not to try
Everybody’s scared to death
When they decide to take that step
Out on the water
It’ll be alright
Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do

Overcome the odds
You don't have a chance
(That’s what faith can do)
When the world says you can’t
It’ll tell you that you can!

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do
That's what faith can do!
Even if you fall sometimes
You will have the strength to rise

Christmas Is All in the Heart

Less than two weeks until Christmas and my brain is buzzing with anxiety ~ all those lists compiling in my head and certainly not enough post it notes to contain them all. I have done well with putting on my cyber hat and have done most of my shopping on-line this year, but there's always an item or two that requires actual shopping!

Being a brain surgery survivor, I feel grateful for how much better I feel this Christmas than last. Hey, I might even be able to store memories this year, too. Last year's Christmas is a blur ~ honestly, I can't remember on thing from last year. Maybe it's for the best ~ a defense mechanism to work through the pain of recovery.

If you are reading this and you have a brain tail, you just might know what I am talking about when I share with you that my brain short circuits, still, from time to time when I can't organize my thoughts or when I get a big dose of sensory overload. The holiday shopping frenzies = SENSORY OVERLOAD. ~sigh ~ 10 ~ 9 ~ 8 ~ 7 ~ 6 ~ 5 ~ 4 ~ 3 ~ 2 ~ 1 ~ This is me taking a couple of seconds to breathe ~ collect my thoughts and move forward.

The shopping will get time ~ I just need to focus on one thing at a time ~ and remember to breathe from time to time ~ oi! More importantly ~ Christmas isn't about the presents ~ Christmas is all in the heart...

Hidden Treasures ~ What's In Your Coat Pocket?

Hidden treasures ~ those little unexpected surprises we discover ~ look around the floorboard of your car (you might even find a two day old burrito with a lil bit o carpet lint on it) ~ all kind of treasures between the sofa cushions, too. What about your winter coat pocket? When was the last time your looked in there?

Snow fell this weekend and I decided it was OK to go ahead and put on my wool coat ~ the thermometer read 27 degrees this morning. As I was putting on my coat I noticed there was something in my pocket ~ I reached in and pulled out the contents ~ ear plugs ~ lovely. Wow ~ it's been over a year since I wore my grey coat ~ I can tell just by pulling out those little bits of yellow foam. These must have been left over from my last MRI right before my decompression last December.

Funny how an object can cause a wave of emotions to wash over me in an instant. I would have preferred to find a stick of gum, maybe some loose change/dollar bills, a grocery list. Like a sage friend of mine told me today ~

'Maybe God wants you to remember that time in your life and He doesn't want you
to EVER forget.'

Message received ~ What will you find in the deep pockets of your winter coat? Maybe someone is trying to get a message across to you, too.