Tuesday, December 7, 2010

You Have Such A Greater Perspective

Waiting ~ hoping for an answer ~ my answer, but knowing that the Lord has a better perspective of HIS plan for my life ~

The Waiting Room ~ Jonny Diaz






Friday, December 3, 2010

It’s Just the Dark Before the Morning

Two years ago today I had my decompression surgery for my Chiari Malformation. What a defining moment in my life! I still remember that moment when I drifted out of the anesthesia stupor ~ realizing that I had survived brain surgery. Of course I did ~ my surgeons are the best in the world and I had an army of people praying for me. Surviving was easy ~ getting on with living was going to be much harder. Or as Andy said in the Shawshank Redemption ~
Get busy livin', or get busy dyin'.

Living with an incurable disease just plain bites! People assume, you get this big bad horrifying brain surgery, then you are cured. Unfortunately, not the truth at all when it comes to Chiari. I have been waiting two long years to get a bone density test to prove that I am finally building bone density up again. You see, I narrowly escaped having the fusion surgery done at the time of my decompression. Since my bones weren't strong enough at the time, my surgeons thought it would be best to wait.

So, last week, I got the results of my test and my bones have been strengthening again ~ hooray and 'SHARK FARTS!!!' at the same time. My endocrinologist suggested I go ahead and make an appointment with my neurosurgeon ~ he wants me to go ahead and get the fusion while my bones are strengthening. Why was this decision such a no brainer when I was 'in the zone'? The further I get from the OR ~ the less I want to go back there. Really pisses me off ~ I don't want to be the one who has to make the decision ~ but I am the only one who can. Who has the time and the resources to schedule brain surgery, time off of work and time to heal?? And I am still not wholly convinced that fusion surgery will alleviate my symptoms. Why can't I just be satisfied with living with my brain tail? Because I am a fighter and will not turn and run away ~ a show-down is inevitable ~ some day soon. ~ SIGH ~

In the meantime, while I stew in deep thought and contemplation ~ searching for an answer lit like a Hollywood billboard ~ if you know me and know that I having a bad Chiari day ~ please don't avoid me ~ make me laugh ~ it's the best medicine for the soul. Pressing on ~

Before The Morning ~ Josh Wilson

Do you wonder why you have to
Feel the things that hurt you
If there’s a God who loves you where is He now

Maybe there are things you can’t see
And all those things are happening
To bring a better ending

Someday somehow you’ll see you’ll see

Would you dare would you dare to believe
That you still have a reason to sing
Cause the pain that you’ve been feeling
It can’t compare to the joy that’s coming
So hold on you gotta wait for the light
Press on and just fight the good fight
Cause the pain that you’ve been feeling
It’s just the dark before the morning

My friend you know how this all ends
You know where you’re going
You just don’t know how you’ll get there
So say a prayer

And hold on cause there’s good for those who love God
But life is not a snapshot
It might take a little time but you’ll see the bigger picture

Once you feel the weight of glory
All your pain will fade to memory

It’s just the hurt before the healing
Oh the pain that you’ve been feeling
It’s just the dark before the morning

Saturday, October 23, 2010

Sleep Study

One of the side effects of Chiari is massive sleep deprivation caused by many factors. My central nervous system continues to be compromised due to permanent nerve damaged cause by my brain tail and continued brain stem kinkage.

At night, I go to bed like every other person on the planet ~ but I don't sleep ~ and if I do happen to fall asleep after hours of tossing and turning I don't stay asleep long. Years of sleep deprivation was taking it's toll on me physically and mentally. I was finally motivated enough to do something about it. In late September, I signed up for a sleep study to determine if I actually have sleep apnea and/or other sleep related disorders that might be preventing me from getting a good nights rest. I had heard stories ~ I was prepared for the cameras on me all night and maybe a handful of electrodes to monitor my sleep patterns ~ but nothing prepared me for the study itself!

Shortly after I arrived at the sleep clinic they stuck electrodes, with wires connected to them, all over my body. They were on my scalp, in my hair, on my forehead and chin, on my collarbone, chest, waist, legs ~ you get the picture ~ I was wired for everything. When it came time to actually turn in for the night, they strapped tight elastic bands around my chest and torso to measure any movement throughout the night. They they tapes a microphone to my neck to pick up any sounds I might make ~ followed by these horrible tubes up my nostrils and don't forget the ever popular pulse-oxygen meter clamped on my index finger. Then they turn out the lights and tell you to get good nights sleep ~ SERIOUSLY????

Did I mention that I watch way too many sci-fi shows ~ I was totally psyching myself out with all the wires on my body ~ good thing they didn't stick anything in my veins or I would have high tailed it out of there. I was already convinced that I was sending signals to the Mother Ship.

Needless to say, it was a very long seven hours before they woke me up to go home ~ I don't know how long I laid in bed tossing and turning (gently at least so I wouldn't rip out all the wires), but I know it was at least a couple of hours before I fell asleep. My follow up appointment is in a couple of weeks. I am very curious to hear what they found out about me and hope that they have a plan of action for me.

Funny thing is ~ I feel like I have not slept a full night in a very long time ~ maybe about 8 or 9 years ~ but losing my job a month ago changed things. For the first time I am sleeping again ~ ironic ~ maybe I was under so much stress with my other job that I had no idea it was keeping me up at night. So, with that huge burden lifted I am finally getting a bit of relief. Did I mention that even with the new recent sleeping at night ~ I am still dog tired ~ true story!

A questions to chiarians out there ~ how wonderful would it be to take away this symptom for good ~ how do you think you would feel if you got 8 hours of solid, uninterrupted sleep every night? Do you think it would make it easier to cope with the demands of constant bombardment from our braintails?

Friday, September 10, 2010

Conquer Chiari Walk Acoss America ~ September 18, 2010

Do you know what you are doing on Saturday, September 18, 2010? I will be joining thousands of walkers in our third annual Conquer Chiari Walk Across America to show my support to raise money and awareness for Chiari Malformation and related disorders.

Please click on this to sponsor me for the Conquer Chiari Walk

There are walks in 30 states this year ~ our goal is to someday have a walk in all of the 50 states.
Conquer Chiari Walk Across America

WHAT? A series of coordinated Chiari walks held at the same time across the country.

WHERE? It is our goal to have at least one walk in each of the 50 states. This year we have 30 walk locations.

WHEN? Saturday September 18th, 2010. September has been named Chiari Awareness Month in several states. In conjunction with the Walk Across America we hope to get more states to recognize September as Chiari Awareness Month.

WHY? To raise awareness of Chiari; to raise money for vital research; and to get people involved.

In 2010 it is our goal to raise at least $300,000 for research. In 2009, more than $250,000 was raised with 90% of the money going directly to fund exciting, new research projects.

Friday, August 13, 2010

To Know You ~

It's been one of those weeks ~ a weeks filled with exhaustion, headaches and vertigo. But wait, don't forget the day I was a breath way from becoming a splat on the pavement on the freeway. It's been a while since I have felt the hand of God surround me and move me silently away from danger. Message received ~ it's still not my time ~ I have work to do here.
I am digging deep and trying to remember how far I have come ~ to not brush off or minimize all that I have survived so that I can focus on encouraging those who live with trepidation.


To know you is never worry for my life, and
To know you is to never to give in or compromise
To know you is to want to tell the world about you
Cause I can't live without you

To know you is to hear your voice when you are calling
To know you is to catch my brother when he is falling
To know you is to feel the pain of the broken hearted
Cause they can't live with out you.

More than my next breath
More than life or death
All reaching for, I live my life to know you more
I leave it all behind, you are all that satisfies
To know you is to want to know you more
To know you is to want to know you more

To know you is to ache for more than ordinary
To know you is to look beyond the temporary
To know you is believing that you will be enough
Cause there is no life without you

More than my next breath
More than life or death
All I'm reaching for, I live my life to know you more
I leave it all behind, you are all that satisfies
To know you is to want to know you more
To know you is to want to know you more

All this life could offer me, could not compare to you
Compare to you
And I count it all as lost, compared to knowing you
Knowing you

More than my next breath
More than life or death
All I'm reaching for, I live my life to know you more
I leave it all behind, you are all that satisfies
To know you is to want to know you more
To know you is to want to know you more

Compared to you
Compared to you
And I count it all as lost, compared to knowing you
Knowing you
And I count it all as lost, compared to knowing you
Knowing you

Tuesday, July 13, 2010

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.
•Dizziness (Vertigo).
•Slurred Speech (Scanning Speech).
•Inability to make rapid movements.
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.

Tuesday, May 11, 2010

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. :)

Monday, April 19, 2010


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 .

Thursday, March 11, 2010

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.

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.


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.


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

Tuesday, February 9, 2010

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!

Sunday, January 17, 2010

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 ~
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!