Live Love Laugh

If You Want Me To

2012-01-22T12:34:00.003-05:00

What inspires you to write, to share life's struggles? For me it's pain ~ pain~pain~pain. For reasons I can't explain, I keep coming back to the same crossroad. For two weeks now I've been plagued with crushing Chiari headaches. The yo-yoing barometric pressure is mostly to blame along with stress of life.

But what's the solution? Unfortunately, there is no grand cure-all solution for me as a Chiarian. I'm still not convinced that a fusion surgery is the way to go either. Entertaining the idea of going to see a local neuro-surgeon to discuss the options of shunt surgery to relieve CSF pressure in me head...if you want me to...

Keep Looking Up

2011-10-16T17:39:00.001-04:00

If you've been following my blog over the past 4 years, you know that I am a firm believer in signs. They can lead me in an unexpected direction, present clarity, be uplifting or just make me laugh until I cry. I've been confiding lately in a wise friend of mine who has given me great counsel. Most recently, at the end of an encouraging email, a very simple yet profound message was conveyed ~

KEEP LOOKING UP

This wasn't a suggestion, but more of a wake up call ~ I've been looking down way too much lately and really can't remember the last time I lifted my head to the heavens and looked up. As a Chiarian, looking up isn't something we do much, because it physically hurts to look up and can cause a wicked case of vertigo. But I digress ~ God commands us to put our trust in HIM, search for that guiding light that shows us the way to go when we have lost our way.

Three times in two days I lifted my head to the skies after a torrential downpour and saw double rainbows. I was even able to capture them on my iPhone. The photo above was taken last night at the football field before the game. The rainbow is a promise that God will never flood the earth again ~ and HE always keeps his promises. But seriously, three times in two days? How many double rainbows have you seen in your lifetime. I've seen a couple but never been able to capture them on film to share with others.

The rainbow sightings have been humbling ~ giving me new perspective and hope. May you been blessed with the sighting of a double rainbow, too.

Peter/Olivia

2011-09-25T15:04:00.000-04:00

What would life be like without your presence in the lives of others? The fourth season of FRINGE is centered around a world without Peter Bishop ~ I get it, this is part of the bigger story ~ but that doesn't mean I like it one little bit!

Actually, I've thought a lot about this theme ever since I was diagnosed with Chiari ~ what would life be like without me on this earth anymore? The concept is a hard one to embrace too closely without letting it consume me whole. I have a questions for other Chiarians and other assorted brain surgery survivors.

How did you cope with the overwhelming feeling that you just might not make it back from brain surgery?

I used to think that I was really good at coping, pushing through very difficult times, but now I'm not so sure. The physical scars, although healed up nicely, will always remain on my skin as constant reminders of the battles I have survived. Now, almost three years post brain surgery, the emotional scars are bubbling up to the surface. Sure, I survived, I'm living, breathing, carrying on at the thing we called life...but at what cost?

I'm not the same person today that I was prior to my Chiari diagnosis. On that profound day,
September 26, 2006, I think I built an instant fortress around myself ~ guarding my emotions, protecting my heart. I think a big part of me wants to walk away from everything prior to surgery and start a new.

The surgeons prepared me for the physical pain I would endure, the long recovery road, but they didn't prepare me for a total fall out of who I am and who I am becoming. This is probably totally gibberish to most readers out there, but I have a feeling a bunch of you know exactly what I am talking about.

Letting Go and Taking the Leap

2011-09-15T21:20:00.000-04:00

"We must be willing to get rid of the life we've planned so as to have the life that is waiting for us."

Joseph Campbell

I watched this trailer this week and it inspired me and gave me hope ~ I hope it does the same for you.

Finding Joe

Finding Joe - Trailer V.7 from pat solomon on Vimeo.

Meant to Be

2011-09-03T10:58:00.000-04:00

I've strayed way of course lately ~ seemingly drowning in a vortex of the unknown ~ and then I heard the lyrics to this song ~ a quiet, strong reminder that I am meant to be here on this earth ~ sharing my gifts ~ I am part of greater plan. I hope this song speaks to you, too.

Long Before You Drew Your First Breath
A Dream Was Coming True

God Wanted to Give A Gift To The World
So He Wrapped It Up In You

Every Step That You've Taken
Every Move That You Make
Is Part Of His Plan

You Were Meant To Be Touching
The Lives That You Touch
And Meant To Be Here
Making This World So Much More
Than It Would Be Without You In It

You Were Meant To Be Bringing
The Gifts That You Bring
And Singing The Songs
You've Been Given To Sing

You Are Perfectly, Wonderfully,
Beautifully Meant To Be
You Were Meant To Be

Long Before You Took Your First Fall
You stumbled to the ground
God started telling the story of you to the angles around
Every failure and victory
Everything inbetween
Its all in his hand

You Were Meant To Be Touching
The Lives That You Touch
And Meant To Be Here
Making This World So Much More
Than It Would Be Without You In It

You Were Meant To Be Bringing
The Gifts That You Bring
SOURCE: LYBIO.NET
And Singing The Songs
You've Been Given To Sing

You Are Perfectly, Wonderfully,
Beautifully Meant To Be
You Were Meant To Be (yeah)
Meant To Be
You are
You are
You are meant to be
You are
You are
You are meant to be

For every breath that your taking
And every move that you make
It's a meaningful life you've been given
Live it well

You Were Meant To Be Touching
The Lives That You Touch
And Meant To Be Here
Making This World So Much More
Than It Would Be Without You In It

You Were Meant To Be Bringing
The Gifts That You Bring
And Singing The Songs
You've Been Given To Sing

You Are Perfectly, Wonderfully,
Beautifully Meant To Be (yeah)
You Were Meant To Be (yeah)
You Were Meant To Be (yeah)
You Were Meant To Be
To Be
You Were Meant To Be

What if

2011-03-20T14:48:00.003-04:00

From my heart to yours ~ what if our trials are blessings in disguise ~

We pray for blessings

We pray for peace

Comfort for family, protection while we sleep

We pray for healing, for prosperity

We pray for Your mighty hand to ease our suffering

All the while, You hear each spoken need

Yet love us way too much to give us lesser things

‘Cause what if your blessings come through raindrops

What if Your healing comes through tears

What if a thousand sleepless nights

Are what it takes to know You’re near

What if trials of this life are Your mercies in disguise

We pray for wisdom

Your voice to hear

And we cry in anger when we cannot feel You near

We doubt Your goodness, we doubt Your love

As if every promise from Your Word is not enough

All the while, You hear each desperate plea

And long that we'd have faith to believe

‘Cause what if your blessings come through raindrops

What if Your healing comes through tears

What if a thousand sleepless nights

Are what it takes to know You’re near

And what if trials of this life are Your mercies in disguise

When friends betray us

When darkness seems to win

We know the pain reminds this heart

That this is not, this is not our home,

‘Cause what if your blessings come through raindrops

What if Your healing comes through tears

And what if a thousand sleepless nights

Are what it takes to know You’re near

What if my greatest disappointments

Or the aching of this life

Is the revealing of a greater thirst this world can’t satisfy

And what if trials of this life

The rain, the storms, the hardest nights

Are your mercies in disguise

Who's Your Guardian?

2011-01-18T20:52:00.017-05:00

Today, we had our third snow storm in the last 7 days. The girls had a snow day today and the hubby was kind enough to lend me his SUV. Better to put the brain surgery survivor in the safest car during an ice storm. The drive to work was pretty uneventful ~ slow going, but nothing too treacherous.

When it was time to go home around 5 today, it took a good 15 minutes to de-ice the car that was completely encased in a day's worth of sleet and ice. Seat belt securely fastened, defroster on, snow button depressed, windshield wipers wiping away, said my prayers asking for a band of angels to protect me and others on the road, I was finally ready to join the other crazy drivers on the freeway.

The roads were challenging ~ the sleet/sneet mixture had changed over to rain which was quickly freezing the slush on the road. No lane lines could be seen on the road in front of me ~ 18-wheelers and trucks were flying down the highway like it was a dry winter evening. I was a bit annoyed, but not frightened. What's an ice covered highway compared to brain surgery? I thought, as a motored towards the safety of my house ~ surely there would be a fire lit in the fireplace by the time I safely arrived. See what I did there ~ positive thinking ~ transporting me out of the not so comfy place that I was presently.

The exit signs seemed to come into vision at a snails pace ~ shouldn't I be getting closer by now? Just then, I focused on the Exit number sign just ahead ~ only two more exits until I am home ~ but wait ~ a cluster of yellow flashing lights caught my eye as a parade of three plows were entering the highway just a quarter of a mile in front of me. Like leading a charging cavalry, they forged abreast all three lanes on the highway ~ clearing the way for all the cars behind them. Some folks would be completely exasperated if this happened to them on their way home ~ me ~ I was happy to slow down and enjoy the slush free ride to my exit.

I breathed a sigh of relief and knew that I would make it home for certain. Those three snow plows were like brave soldiers leading their people into battle ~ leading the charge must take great strength and courage. All those people are looking up to them to lead, take charge, protect them. Reminds me of a scene from Return of the King when Gandalf rides out with his staff as he thwarts the Nasgul and safely leads his people to the safety of Gondor.

You see ~ all along I was protected by guardians ~ but it wasn't until I saw the lights of the snowplows til I realized I was completely safe from harms way. Who do you turn to when you need a guardian?

Hold On To HOPE!

2011-01-11T21:14:00.001-05:00

Skull Design & Root Causes of Neurodegenerative Diseases

2011-01-04T20:26:00.013-05:00

(Yeah ~ you've seen that gorgeous skull before ~ it's my very own) I stumbled upon the coolest blog this week ~ It's actually titled:

Alzheimer's, Parkinson's and Multiple Sclerosis, Getting to the Root Causes of Neurodegnerative Diseases

I did a search for Chiari within the blog and found numerous posts. Just glancing through some of the blog posts awakened the researcher in me like Rip Van Winkle after he snoozed way to long!

Here are a few snippets from the blog ~ Seriously, I think I could read the whole blog in one sitting and only grasp one-eighth of the meaning ~ it's deep and scientific and he's talking about us Chiarians ~ very interesting ~ what are your thoughts on the matter?

all humans are predisposed to the brainstem sinking into the foramen magnum due to its location beneath the skull.

Typically, the brainstem is surrounded by cisterns filled with cerebrospinal fluid (CSF) which allows the brain to float above the foramen magnum and base of the skull thus preventing contact with the bones of the base and foramen magnum. In a Chiari malformation, it is typically the tonsillar portion of the cerebellum that gets trapped in the foramen magnum.

the location of the brainstem and cranial nerves in relationship to the base of the skull and foramen magnum. Their location makes them highly susceptible to compression by either an increase or a decrease in CSF volume in the cisterns.

A short length in the base from the front to the back of the cranial vault, predisposes the brain to crowding and a condition called Chiari malformations in which the cerebellum or brainstem gets pushed down into the foramen magnum. Chiari malformations can block both venous blood and cerebrospinal fluid (CSF) pathways causing CCSVI and hydrocephalus type conditions. Chiari malformations used to be considered as a childhood problem for the most part. However, recent studies show that trauma can cause Chiari malformations in adults. What’s more, Chiari malformations have also been associated with multiple sclerosis.

And did I mention all of the pictures and diagrams on the site? Amazing!

Rogue DNA

2011-01-03T21:41:00.000-05:00

One of my resolutions for 2011 is to start actively blogging again. I have about 80 drafts of blogs just waiting to be posted ~ many a time I have started with great intentions only to loose my train of thought in mid sentence...

About a year ago I found a website looking for Chiarians for a genetic study. Of course I definitely wanted to be included in the study and inquired as to what was involved. After a long conversation with the study's coordinator I found out that there would be some paperwork inquiring about the medical history of me and my family and a phone interview. Then, there would be a traveling phlebotomist that would eventually be in my area, come to my home and take blood samples from all family members.

Given the chance to contribute to research and science for the chance in finding a cure for Chiari ~ I was beyond thrilled to share my DNA. Although many doctors are in denial, Chiari couldn't possibly be genetic! Where's the proof? ~ WE know that it most certainly is and this genetic study will further prove the connection.

The Genetics of Chiari Type I Malformation is still looking for volunteers ~ you, too, could contribute to science and possibly help us find a cure for CHIARI! I have printed the details below ~ If you have any questions, please feel free to contact me.

Genetics of Chiari Type I Malformation

The Duke Center for Human Genetics is actively recruiting families who have TWO OR MORE family members with Chiari type I malformations, with or without syringomyelia. These family members must be related to each other by blood, and BOTH must be willing to participate. At the current time, we are not able to enroll families in which the only diagnosed members are a parent and child. If the family meets these criteria and wants to receive study participation information, please contact the study coordinator at 1-877-825-1694 orchiari@chg.duhs.duke.edu. More information can be found on our website

http://wwwchg.duhs.duke.edu/diseases/chiari.html.

You Have Such A Greater Perspective

2010-12-07T21:08:00.008-05:00

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

HERE IN THIS WAITING ROOM YEARNING FOR YOU TO SAY GO
AND THOUGH I’M CONVINCED THAT A YES WOULD BE BEST
THIS TIME YOU’RE TELLING ME NO

IT’S NOT THAT I DON’T HAVE AN ANSWER
IT’S JUST NOT THE ONE THAT I’D LIKE
BUT THROUGH THIS TIME LORD I MUST KEEP IN MIND
YOU’RE ALWAYS WISER THAN I

YOU HAVE A MUCH BETTER PURPOSE
AND YOU HAVE A FAR GREATER PLAN
AND YOU HAVE A BIGGER PERSPECTIVE
CAUSE YOU HOLD THIS WORLD IN YOUR HANDS

THE THINGS THAT I SEEK ARE FROM YOU
LIKE THE STRONG HEALING TOUCH OF YOUR HAND
BUT WHEN YOU SAY NO HELP ME TRUST EVEN THOUGH
THERE’S A REASON I CAN’T UNDERSTAND

WHEN THAT MIRACLE COMES CAUSE YOUR ANSWER IS YES
I WILL PRAISE YOU FOR ALL OF MY DAYS
BUT WHEN YOUR WISDOM DECLARES THAT A NO IS BEST
I WILL PRAISE YOU JUST THE SAME

It’s Just the Dark Before the Morning

2010-12-03T00:00:00.011-05:00

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

Sleep Study

2010-10-23T16:03:00.005-04:00

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?

Conquer Chiari Walk Acoss America ~ September 18, 2010

2010-09-10T16:19:00.017-04:00

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.

To Know You ~

2010-08-13T18:54:00.001-04:00

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.

CASTING CROWNS - To Know You

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

Brain Injury

2010-07-13T22:23:00.001-04:00

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.

---------------------------------------------------

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

2010-05-11T18:54:00.012-04:00

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

2010-04-19T16:13:00.003-04:00

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:

I have a Chiari Malformation of which there is no cure (not yet...)
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
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
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!
My car was rear-ended about a month ago when I was sitting at a red light.
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

2010-03-11T17:24:00.008-05:00

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

2010-02-09T16:38:00.000-05:00

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

2010-01-17T19:00:00.005-05:00

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

2009-12-29T14:22:00.004-05:00

Just when you thought you knew everything ~

Life Is So Much More Than What Your Eyes Are Seeing

2009-12-17T19:10:00.008-05:00

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

2009-12-12T10:47:00.012-05:00

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?

2009-12-07T16:05:00.004-05:00

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.

NCB ~ Simply ~ The BEST

2009-11-28T14:38:00.001-05:00

Our North Colonie Pee Wee Large cheer team competed at the Eastern Regional competition last weekend in Trenton, NY. Our cars were covered in shoe polish with NORTH COLONIE BISON. The top two teams go on to compete at the National level in Florida, Walt Disney World. Last year we missed going to Nationals by TWO points.

After the NY competitions were done we had three weeks to totally re-choreographed our routine to kick it up a notch so that we would have a shot at placing in the top two.. We threw in one legged stunts ~ liberties, arabesques and a heal stretch. Practices were long and tiring, but the girls rose above all the sicknesses that plagued our squad and made it work.

When it came time for us to take the floor and practice one last time before performing ~ confidence was shaken to the core for Hannah. The noise level in the arena was high ~ the girls couldn't even hear us shouting out the eight counts to walk through their routine. For whatever reason Hannah's stunt group didn't get her up and there wasn't a second chance to practice again. Our team was ushered off the practice mats and we got in line to perform. Emotions were running high ~ there was electricity in the air with anticipation of performing our 2:30 minute cheer/dance.

Us coaches were getting the girls pumped up ~ wishing them good luck and getting ready to say goodbye to them before their performance. I glanced over at Hannah and saw her tear streaked face ~ she was totally devastated ~ she was shaken and I had to find a way to get her past defeat and focused on the huge task at hand. She is a flyer this year and goes up in the air a couple of times during the routine. If her confidence didn't come back and quickly it would have spelled disaster for the routine.

I rushed over to embrace her ~ looked in her red eyes and told her she was going to nail her performance ~ shake off the feeling of inadequacy and make it work. I stepped away from her to let the other coaches swoop in to boost her up, too. She got the water works flowing for me and I had to turn away to hide my tears from the rest of the team. We said goodbye and took our places in the tunnel where the coaches wait until our team takes the floor. What a nerve wracking 30+ minutes we waited!

When our NC Bison took the floor we were ushered to the coaches box to watch them perform. We all held hands tightly ~ my heart was beating a million beats a second ~ I said another prayer ~ took a deep breath and waited for them to begin. When our girls spirited onto the floor I could see their smiles and their energy was bubbly ~ they had taken the floor to give it their all and they were happy! Their performance was flawless ~ not one bobble ~ all the stunts went up ~ what an answer to prayer. When they were done we all leaped to our feet ~ screaming ~ jumping up and down. Our girls had given it their all ~ and now we waited for the results.

Truthfully, I didn't even want to watch the other teams compete. We had done our best and our fate was in the hands of the judges. When all the teams took the floor for the awards ceremony I had high hopes that we would place,but had no idea if we had done well enough to go to Nationals. When they announced our team as the THIRD PLACE winners it was bittersweet ~ yeah we missed the coveted second and first place, but we had competed with a tough competition. There were tears of disappointment, but by the time we left the arena our girls filed out with smiles on their faces and heads held high.

Not until a couple of days later did we find out what the other team's scores were ~ that's when our third place win became even more bittersweet ~ we missed Disney by one third of a point!! That's 0.333333333 ~ Last year we came in FOURTH ~ this year THIRD ~ next year ~ DISNEY.

It's the Climb

2009-11-28T10:00:00.003-05:00

Often, I get swept away in the flurry of activity in my life ~ it helps me to not focus so much on the tireless climbing. Chiari never takes a vacation ~ the brain tail might sleep in late after a full day of inflicting pain, but awakes soon enough. In light of our cheer competition last weekend (that's another post) it's hit home more than ever that life is all about the climb.

Living with Chiari is a climb, but along the way lives have been touched ~ healing is going on all around us. I am trying to re-focus and stop looking behind at the past and ahead at the future and stay in the moment ~ the now ~ the ground beneath me. Won't you join me?

THE CLIMB ~ Miley Cyrus

I can almost see it, that dream I'm dreamin but,

there's a voice inside my head saying, you'll never reach it.

every step I'm taking every move I make feels lost with no direction, my faith is shaking,

but I, I gotta keep trying I gotta keep my head held high

There's always gonna be another mountain I'm always gonna wanna make it move

always gonna be an uphill battle and sometimes I'm gonna have to lose it

ain't about how fast I get there ain't about what's waiting on the other side

its the climb

The struggles I'm facing

the chances I'm taking

sometimes might knock me down but

no I'm not breaking

I may not know it but these are the moments that

I'm gonna remember most yeah just gotta keep going and I

got be strong gotta keep on pushing on cuz

There's always gonna be another mountain

I'm always gonna wanna make it move

always gonna be an uphill battle sometimes

I'm gonna have to lose ain't about how fast I get there

ain't about whats waiting on the other side

its the climb

keep on moving keep climbing

keep the faith babe

its all about its all about the climb

keep the faith keep your faith

I Can Only Imagine

2009-11-13T15:30:00.003-05:00

Blogging has been a way for me to express what I cannot vocalize and I am trying to get back in the swing of things by blogging more. As my one year post decompression date is beginning to appear just over the horizon I seem to be doing a lot of reflecting. There were a lot of blogs that I started and they ended up in my draft box. This one I actually started on 10/12/07 ~ I thought today would be a good day finally post it.

Facing fear ~ staring it in the face ~ thoughts of death and dying have come up for me, for obvious reasons. But you see, to die would be devastating for my family and friends, but for me, I can only imagine.

When I wrote my thoughts about staring death in the face, I hadn't even been detethered yet ~ but I was processing the imminent fear that comes when facing brain surgery. I look back and smile knowing that putting it all out there, expressing my fear, laying it all down for the Lord to take it from me ~ my fear was totally dissolved by the time I had surgery.

WE all face fear on a daily basis ~ rather it's a fear of spiders or death ~ we all deal with it in different ways. For me, fixing my eyes on eternity put everything in perspective and it's a good reminder for me today. I woke up with a brain tail headache ~ it's the 13th and a Friday today ~ not that I am superstitious, but I am not firing on all cylinders today. Note to self ~ no operating heavy machinery today!

Open Minded ~

2009-11-01T08:23:00.005-05:00

Which Fringe Character Are You?

More on Fringe. Created by BuddyTV

Any FRINGE fans out there? Did I mention that last year FRINGE became on of my most favorite new shows. I find it ironic every time someone mentions the words 'open minded' in reference to me ~ seriously have the brain on my mind 24-7. Brain surgery ~ check ~ I am coming up on my one year anniversary since my new birthday (brain decompression 12/3/08). That day certainly was a milestone in this journey we call life, but as I am finding to be more and more true these days ~ you can't blaze past brain surgery and think that everything will go back to normal ~ whatever normal is to you.

Brain surgery has changed me on so many levels ~ unexplainable things have been happening ~ maybe that's why I can totally identify and relate with the plot of FRINGE ~ nothings too far fetched when it comes to the capability of the mind. Expect the unexpected and the unimaginable to happen on a daily basis and roll with it.

If Looks Could Kill

2009-10-25T16:39:00.001-04:00

This was the result of me leaving work early on Thursday to pick up a sick child ~ must make the best use of my time off, right? Captain Kirk so did not enjoy the DUDE hat ~ I blame him for me having lost my voice completely today!

Conquer Chiari Walk ~ 2009

2009-10-21T19:37:00.008-04:00

So I am a little late on posting about the chiari walk that took place on September 26th ~ life has been crazy busy. The morning of 9/26 was absolutely gorgeous ~ the sun was shining and the air was crisp. I don't know the final count of how many walkers participated, but there was a good size crowd of brain tails and their friends/family. I ended up being the grand Marshall for our walk, because I was the only one who knew the route. Thank goodness the vertigo is gone or it would have been a swirly walk for everyone!

The best part of the brain tail gathering was being reunited with my brain tail friends who came from near and far. So good to see everyone and spend time catching up on our lives. We are all a hearty bunch. On the outside you might see smiles, but inside we are all struggling with either pain, financial burdens due to the aftermath of insurance bills, emotional stress ... We have our good days and other days when it's a struggle to crawl out of bed. Getting together reminds us that we are not alone in our chiari journey ~ we draw strength from one another ~ and make that choice to keep taking the next step forward in life. It's not easy, but we are all fighters ~ bound and determined to not let chiari win.

Thanks to all of you who support a chiarian in one form or another ~ every day we are one step closer to conquering chiari.

Happiness Is Like A Butterfly

2009-10-03T13:16:00.002-04:00

A month has flow by without any blog posts and yet in my draft blogs cue I have at least 70 post ideas just waiting for me to breathe life into them. ~sigh~ Oh how I wish I was wittier and had an uber interesting life ~ but truth be told ~ I am finding it hard to put my thoughts down so that they will make sense to anyone but myself.

The past month has flown by in a flurry of bug spray and cheerleading practices. I have probably swallowed a gallon of deet by now in a fruitless attempt to ward of the skeeters (that's Texas for mosquitoes). I volunteered to be an assistance coach for Hannah's cheer squad this year and I have had a great time getting to know all the girls and learning the cheers and stunting techniques.

On September 1st I passed my Microsoft SQL Server 2005 exam ~ this was my second attempt and I feel like a huge weight has been lifted off my shoulders. Funny how sometimes life throws a big road block at you. Most of the time the only option you have is to remove the barrier by passing through it. For months I felt stuck ~ unable to move forward in my life. When I sat down to take the test at the computer testing center, I bowed my head and prayed right then and there ~

'Lord ~ Please give me the brain power to pass this test so that I can focus more on my purpose for being on this planet. I don't have to make a perfect score ~ just help me to pass.'

After completing the book questions I felt pretty confident that I had passed the first part of the test, but as soon as I started the application piece of the test I felt the despair creeping in as I was certain there was no way in hell that I would pass. You can imagine my complete surprise at the end of the exam when the message popped up on the computer screen exclaiming that I had made a 70 and passed the exam. I remember answering the computer out loud with ~ 'Are you freaking kidding me?!! I proceeded to do my happy dance all the way to my car with great relief and humbling tears of joy as I thanked the Lord for answering my prayer.

When I wasn't looking ~ I think a butterfly, or two, alighted on my shoulder ~ happiness, is that you?

Sisterhood/Brotherhood of the Traveling Brain Tails

2009-09-17T21:03:00.024-04:00

Next week on September 26th, I will be walking alongside other brain tails, friends and family in the second annual Conquer Chiari Walk Across America walk here in the Albany area. Participation is free but you can make a donation on the day of the walk or online. Here's the link for the online donations ~ https://www.conquerchiari.org/ccwaa09/ccwaa_donate.asp?user=LacieHeiser ~ If you would like to sponsor me, select the Walk Location: New York, Albany ~ Then you can select my name. Even if you don't have much to give, even a little can add up.

September 26th is an emotional and significant day for me. My chiari brain tail was discovered on 9/26/06 ~ three years ago. As I pause to glance over my shoulder and reflect on my three year that has brought me here today, I am overwhelmed with every emotion ~ fear, denial, disappointment, hopelessness, hope, pain, elation, frustration, sadness, joy. How did I make it through those incredibly tough times? All of the neurologist appointments, hours of phone calls with the insurance company, volumes of paper work, countless MRI and CT scans, tethered cord surgery, invasive cervical traction, brain decompression, morphine pumps, hours of physical therapy ~ all these things and more have consumed my life for the past three years. Every baby step I took was taken in faith ~ a blanket of reassurance to keep me moving forward.

As I briefly glanced at the list of walkers signed up for Albany walk ~ I recognize and know a large number of people. These amazing individuals were strangers to me and now have become instant friends all because of our brain tail bond. I am so thankful for all the friends I have made through my chiari journey ~ they have made the road a lil bit easier to tread upon.

We all walk to raise money for chiari awareness and research to one day find a cure. There IS NO CURE FOR CHIARI. Painful surgeries will help prevent some irreversible nerve damage and perhaps paralysis. But if I would dare to speak for many other brain tails ~ we all live with some degree of pain on a daily basis ~ We deal with it and keep moving forward. But wouldn't it be awesome to find the gene that goes crazy during gestation to put a stop to chiari once and for all. Life is for the living. I'm looking for the brighter days, won't you join me?

CONQUER CHIARI WALK ACROSS AMERICA

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

WHERE? This year, the walk will take place at more than 30 locations. Check the List of Sites to see if there is a walk near you.

WHEN? Saturday September 26th, 2009. September has been named Chiari Awareness Month in many 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 and to raise money for vital research. In 2008, the Walk Across America raised $170,000 for research, with 90% of the money going directly to fund exciting research projects at major universities and treatment centers.

The Words I Would Say

2009-09-11T16:12:00.008-04:00

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

2009-09-10T21:21:00.000-04:00

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

2009-08-10T16:20:00.000-04:00

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

2009-08-02T12:24:00.001-04:00

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

2009-07-21T22:42:00.012-04:00

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!

2009-07-11T10:55:00.007-04:00

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

2009-07-09T00:00:00.001-04:00

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

2009-06-30T22:15:00.004-04:00

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

2009-06-10T15:42:00.023-04:00

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

2009-06-02T19:41:00.004-04:00

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?

What A Package Deal: Faith, Hope, Wisdom and Courage ~

2009-05-28T17:23:00.014-04:00

A month ago, I had a bucket full of iris bulbs in my garage that have traveled all the way from Texas to New York. The story behind the traveling bulbs is that they were originally dug up out of the ground at a family property in the Texas Hill Country back in the early 1970s. Since then they have been planted ~ dug up ~ stored ~ transplanted ~ and so the cycle repeats over and over again with each move. So here we are in 2009 and I just put the bulbs in the ground. They have been sitting in our garage for almost THREE years ~ since we moved I just haven't gotten around to transplanting them ~ and finally I can check them off my list.

I always thought that the spring time wasn't the greatest time to put bulbs in the ground, but I knew if I waited much longer, I would blink and another year would have flown by. I also was not expecting any blooms this year as I thought the blooms had to sit in the ground a year before producing blooms ~ guess I was wrong! You can imagine my surprise when I noticed just the other day that we have a couple of deep purple blooms peeking out ~ just waiting to burst forth with breathtaking blooms.

Since nature always seems to be speaking to me I looked up the meaning of the Iris flower and was reassured that certainly their symbolism speaks louder than words. The iris is associated with faith, hope, wisdom and courage. I'll take two helpings of that!

There's Some Good In this World Worth Fighting For

2009-05-14T23:26:00.009-04:00

Yesterday there was a public announcement that Dr. Bolognese ~ neurosurgeon extraordinaire has been reinstated to resume business as usual again ~ This is great news for the Chiari community. I have seen every spectrum of emotions just flooding out of bloggers across the community ~ anger, rage, fear, hopeless, dread, panic ~ I can't tell you how many of you I have talked down from the bridge ~ urging you to keep the faith in TCI ~ lean on the facts and not the feelings. Dr. B is a groundbreaking, incredible doctor ~ those are the facts ~ he has restored my health to 90% and I am forever grateful :)

Something I have learned as a brain surgery survivor and as a chiarian is that when all hope fades and all you can see is darkness enveloping you, this is when faith steps in and shines a light in those dark places. I think we all can stop holding out breaths and breathe a deep sigh of relief. I had my post op f/u appointment today at TCI ~ I have news. but more on that in another post. Just a reminder that no matter what life continues to throw me, there's always something good in this world worth fighting for ~ looking for more brighter days.

Frodo: I can't do this, Sam.

Sam: I know. It's all wrong. By rights we shouldn't even be here. But we are. It's like in the great stories, Mr. Frodo. The ones that really mattered. Full of darkness and danger, they were. And sometimes you didn't want to know the end. Because how could the end be happy? How could the world go back to the way it was when so much bad had happened? But in the end, it's only a passing thing, this shadow. Even darkness must pass. A new day will come. And when the sun shines it will shine out the clearer. Those were the stories that stayed with you. That meant something, even if you were too small to understand why. But I think, Mr. Frodo, I do understand. I know now. Folk in those stories had lots of chances of turning back, only they didn't. They kept going. Because they were holding on to something.

Frodo: What are we holding onto, Sam?

Sam: That there's some good in this world, Mr. Frodo... and it's worth fighting for.

Leeland-Brighter Days Lyrics

Time keeps moving on
Through the sunshine and the storm
And my dreams are set in stone
And someday I’ll be who I want to be
For now I’ll wait
For the sun to shine again
And for now I’ll wait
For the rain to pass away

And I’m looking for the brighter days
When all my hurts seem to fade away
I’m looking for the brighter days to come my way

Faces come and faces go
But none seem to look my way
And walls have stood and walls have fallen
But my heart seems to wait
For now I’ll sit at the end of the road
And for now I’ll wait
At the end of the pathway

I’ll see the sun one day shine upon me
I’ll see the sun one day
And watch the night time turn to morning
But for now it all comes back around

Brain Tail Whisperer

2009-05-06T22:30:00.000-04:00

I was so sad and sick to my stomach today as the scathing accusations ripped the headlines. I won't dignify the press here, you can find the articles on the Internet ~ but I feel as a loyal patient of Dr. B and Dr. M, I must say something.

The facts are that my incredible neurosurgeons (Brain Tail Whisperers) were recently suspended for two weeks due to a scheduling mishap with the hospital. I am still hoping that the real story will eventually come out, but my brain tail tells me that there was a family emergency and the powers that be didn't get the message to cancel a surgery. Let's face it ~ communication breakdowns happen ~ it's part of life. Recently there was a HUGE miscommunication that resulted in panic in NYC when Air Force One flew over Manhattan for a photo op and forgot to tell the Mayor of NY! It's unfortunate that this happened, but seriously, I have been a patient at North Shore Hospital three times and it's a zoo over there. My docs perform two surgeries a day ~ five days a week. I know they are way over worked and must be completely exhausted! The bright side of this is that they got a well deserved vacation!

I seriously doubt that any of the reporters or the lawyer who is filing lawsuits has ever met Dr. B in person. My Chiari journey has involved 4 local neurosurgeons. Two of which I adore and they referred me to TCI as I was a complicated case and way out of their league. The other two told me to my face that the good docs at TCI were making diagnosis up! When it comes down to it, I have leaned on faith and what my heart has told me where I should be treated.

When I had my initial consult at TCI in May of 2007 a surgery plan was proposed that involved a spinal detethering followed by a posterior fossa decompression and fusion. I was told by Dr. B that the decompression surgery was brutal and would be a long and painful recovery. He said that when surgery looked better than living with my symptoms, then I would know when to have the procedure done.

On 2/1/08 I had my spinal detethering surgery ~ remember this was only diagnosed by TCI. They had explained that my spinal cord was tethered and responsible for causing my chiari malformation. The constant downward pulling of my brainstem had caused all kinds of horrible side effects. I was willing to believe in the unseen and put my faith in my surgeons. When I came to after my detethering Dr. M stopped by the recovery room ~ held my hand ~ looked me in the eye and told me that I was incredibly tethered. He wanted me to cancel my brain surgery that was scheduled for the next month as he was certain that the detethering would reduce my brain herniation.

After the detethering, my symptoms were greatly improved, no more gait problems, my constant nausea was gone ~ but truth be known, my brain tail measured at 17mm ~ it was going to take an act of God to make me feel up to 100% again. I scheduled my decompression for 12/3/08 as it seemed evident that my brain definitely needed more room. I wasn't disappointed that the detethering didn't 'fix' me ~ I understood the complexity of my case. I couldn't continue to live with the constant swirling vertigo, brain fog, trouble swallowing, trouble breathing. I know that my docs at TCI are not super heroes ~ although they come pretty close in my book. The day before my decompression I found out that between Feb and Dec 2008 my brain tail had shrunk from 17mm to 10mm due to my detethering! The surgery absolutely improved my condition.

I know I have rambled on, but I am almost finished ~ So I had my brain tail decompression done on 12/3/08 and I am so thankful that I was decompressed. Sure, I have Chiari pressure headaches on a rainy day, but compared to how I felt prior to surgery I would say I am close to 95% now! TCI takes patients who have no where to turn ~ patients turned away from other surgeons who claim they need to be locked in a padded room as all their symptoms can't possibly be related to Chiari! Their bedside manner is incredible ~ how many neurosurgeons do you know that will hold your hand, look you in the eye and put your fears to rest?

I could go on for another hour, but the point I am trying to make is ~ please don't lose faith in TCI. Please don't be quick to judge before all the facts are in. These are good, hard working, caring surgeons who have saved thousands of people! They need our support now more than ever. This too will pass ~ take the higher road with me ~ I still believe.

Our Lil Maple Tree

2009-04-29T20:20:00.020-04:00

Last year we adopted a pair of maple trees ~ or maybe I should say that they were the targets of a rescue mission operation. They were living in a vastly overpopulated grove of trees and by transplanting them to our yard we gave them a second chance at starting over again with a longer life expectancy. Needless to say I have been watching the trees closely to see if they would survive their first NY winter without the protection of other larger trees around them.

Letting mother nature take it's course has been difficult for me. I kept wanting to cover up the trees to shelter them from the harsh winter ice and snow storms. With each passing winter day I kept preparing myself to see one or both of the sappling broken in two or uprooted ~ but thankfully this never happened. Now that spring is here I waited with great expectation to see which tree would grow leaves first.

One of the trees I am more attached to ~ you see ~ this particular tree is about a foot shorter than the other one. Maybe she's the runt of the forest. Regardless of her size, she sprouted leaves before the taller, healthier looking tree! She's a fighter for sure and this has reminded me that just because the outside might look smaller it doesn't indicate that everything is going according to plan on the inside ~ sigh ~ Do you hear a parable coming????

Working out in the backyard this weekend I was reminded that weeds grow like crazy as soon as the weather is warmer and they will completely destroy any healthy plants in their path. I spent about two hours on my hands and knees uprooting dandelions. I was so focused on the task at hand that I forgot to put on gloves. About an hour later, the seering pain in the palm of my hand nudged me to go ahead and put on the gloves to avoid further blistering! Whenever I choose to purge something unhealthy out of my life, whatever I am removing will fight back with the power of a thousand lions. Duly noted!

So back to the parable of my favorite maple tree ~ she needs a strong, hearty name, don't you think? Perhaps Eowen ~ As I look back over my Chiari journey I have often felt a bit like the tree weathering harsh weather. No one else has been able to 'share the load' ~ shout out to Samwise Gamgee ~ This path that I have endured is mine alone and my burden to bear. Although I have many supportive friends out there ~ especially you fellow 'brain tails' ~ it's up to me to stand tall, press on and encourage others who are somewhere along the winding road on their Chiari journey.

The absence of me in the blogging world hasn't been because my symptoms have returned. Truth be known I am feeling really great and only have an occasional pressure Chiari headache, but compared to all the symptoms I had prior to brain surgery ~ I have nothing to complain about. I still feel like I am coming out of a very long coma ~ seeing life through new eyes again ~ remembering what it feels like to feel alive again. For those of you Chiarian's out there who are paralyzed with fear with even the thought of brain surgery ~ know that from my perspective, the surgery absolutely works. My quality of life has been restored to almost 95%. There is always hope ~ dig deep and find your courage and draw strength from those of us who have gone before you.

Always Looking Up

2009-04-07T22:25:00.002-04:00

Last week I DVR'd an Oprah episode when Michael J Fox was the guest. Today I finally got around to watching it and wasn't prepared for the profound effect the show had on me. It's been a rough couple of days. The sky has been dense with grey clouds and the rain and some snow flakes have been falling. As a chiarian these weather conditions can cause those lovely barometric pressure headaches from hell, not to mention the feeling that an elephant has camped out on my chest making it difficult to breathe. On top of it all I have been hunkered down in my study bunker trying to cram for my SQL 2005 test that I took yesterday. I passed the multiple choice ~ 35 question section that I have been studying for, but I totally failed the application part of the test that I had no idea existed! Needless to say I was feeling defeated and disappointed yesterday. All that studying and I have to take the whole thing all over again ~ sigh
Anyway, while I was sulking around last night I was thinking about the aftermath of my brain surgery. I do survival mode really well ~ I know my path and I slog through it. But what now? After brain surgery there isn't anything anything harder in life ~ right? Wrong ~ I am learning that my perspective on things have totally changed post surgery. I can't even begin to explain it yet ~ maybe it's a feeling I have deep down in my heart ~ like I need to be doing something profound ~ making a difference. But honestly, I just don't have the energy yet ~ I am getting there, but slower than I would like. That brings me to the point I was trying to make all along.

I have always been a big Michael J Fox fan ~ ever since Family Ties. How could you not love the guy?! Remember Back to the Future (the flux capacitor is fluxxing) and Secret of My Success? Classic movies of the 80's. Fox was diagnosed with Parkinson's Disease about 18 years ago. I have kept up with his condition and I am amazed at how he has continued to live his life despite all of the odds stacked against him. Oprah's interview with Fox was inspiring to say the least.

When my Chiari symptoms were at their worst I thought I just couldn't continue to live with the constant tilt-a-whirl effect of vertigo and the crushing headaches. Then I hear Michael talk about feeling like he's got a four year old constantly tugging on him ~ pulling his body in every direction. I can't even to begin to imagine how difficult his struggle must be ~ but he does it and is making a difference in this world by raising awareness and helping to find a cure.

I saw a quick one minute promo for the special and was intrigued by the fact that Michael's symptoms were lessened when he was in the high altitude of the Himalayas. Sounds like my intuition about going to Everest just might be more than a passionate desire! Again, I am inspired by Fox's great positive attitude, proof that even when you can't change your circumstance, you can choose to be positive. Adventures of an Incurable Optimist is on May 7th, 10pm on ABC. ~ put it on your calendar and watch with hopes that you just might find a glimmer of hope and renewed faith. too. Thanks to Michael for awakening my blogging muse who has been slumbering for way too long!

Barometric Pressure Headaches ~ still

2009-03-18T12:09:00.001-04:00

They say it takes about a year to be healed from a brain decompression and here I am thinking I feel pretty good so I must be healed already ~ until I get whacked with the stealth barometric headaches again. My surgical report did state that I had absolutely no flow at all in my 4th ventricle prior to surgery. The decompression restored the flow to that of the 'jet stream', but I wonder how much time I must wait until the pressure headaches are gone. Maybe I will always be plagued by them due to too much damage from 38 years of ventricle squashing in my brain?!

I was reading up on what causes these pressure headaches. I must fall into the category of 'weather sensitive' individuals. There is a feature on http://www.weather.com/ where you put in your zip code and it will tell you on a scale of 1-10 what the Aches and Pains index will be for the area where you live. They are predicting a 6 for today and a 7 for next Monday. This might be a good idea to keep track of when planning activities for the week ~ to not expect much when the numbers creep above 5. But then again, I usually can tell at least 24 hours before the pressure is coming.

Maybe those ancient memories ingrained in my DNA about sailing across the ocean serve me well. I would have been be very handy on a ship since I can tell if there's bad weather coming ~ sigh. Now where's my Excedrine Migraine medicine?!!

I Believe In The Sun Even When It's Not Shining

2009-02-26T17:51:00.000-05:00

It's easy to get lost in the dreariness of winter. It seems like the wintry mix and clouds will never part. That's what I was thinking on my drive in to work this morning ~ then as quickly as the depressing thoughts came into my head, they were gone with the sound of lyrics on the radio that transported me once again to a place of hope and warmth.

I Believe In Love ~ Barlow Girl

How long will my prayers seem unanswered?

Is there still faith in me to reach the end?

I'm feeling doubt I'm losing faith

But giving up would cost me everything

So I'll stand in the pain and silence

And I'll speak to the dark night

I believe in the sun even when it's not shining

I believe in love even when I don't feel it

And I believe in God even when He is silent

And I, I believe

Though I can't see my stories ending

That doesn't mean the dark night has no end

It's only here that I find faith

And learn to trust the one who writes my days

So I'll stand in the pain and silence

And I'll speak to the dark night

I believe in the sun even when it's not shining

I believe in love even when I don't feel it

And I believe in God even when He is silent

And I, I believe No dark can consume Light

No death greater than this life

We are not forgotten

Hope is found when we say

Even when He is silent

I believe in the sun even when it's not shining

I believe in love even when I don't feel it

And I believe in God even when He is silent

And I, I believe.

Determination

2009-02-23T22:16:00.002-05:00

Helloooo ~ any blog readers out there? I know I have been taking some time away from the world of blogging ~ I am still alive and thought I would start with a random post to try and jump start my muse again. Surely this picture would inspire at least one reader out there!

Let me introduce you to our latest outside resident ~ have you ever seen such acrobatic skills just for a bite to eat? I have yet to actually witness how this creature gets up to the feeder in the first place. This squirrel didn't get to be so full and fluffy by hanging out in a hole of a tree ~ he's spent some long hard hours thinking outside of the box ~ learning new skills. You should see Captain's reaction when the acrobat show begins. He jumps up on the window sil and stares intently at the squirrel ~ I think he's decided that it's another cat and not categorized as a second breakfast. Hey, he's brown and has a fuzzy tail like him, so it must be a cat, right????

Our Hope Endures

2009-02-02T20:54:00.000-05:00

I have been absent in the blogger world and wanted to touch base and let your know what's going on in my little corner of the world. I celebrated my 1 year anniversary since my spinal de-tethering surgery yesterday. Hooray ~ today I went back to work ~ that 2 month 'spa' vacation really flew by fast! I am finding that getting back into the swing of things is like getting to know the characters on LOST again after they have been on a long sabbatical.

People keep asking me how I feel in comparison to before the surgery. It's a tough question to answer, because I felt so bad for at least three years prior to surgery. Now ~ I truly feel like I have been given a fresh start at life ~ I feel more alive than I have for a very long time. Yes, I have rock star neurosurgeons, they did an outstanding job restoring my brain and I owe them my life. However, I know that my faith in God's healing hands and my positive spirit have healed me from the inside out.

I wanted to share some beautiful lyrics I heard last week that continue to haunt my thoughts. I so identify with the lyrics I posted below and the emotions they bring up to the surface. There are so many Chiarians out there who can identify with the constant struggle with chronic pain ~ there seems to be no end to the struggling & the pain, but our hope endures. As for me and my journey, something I am getting more and more comfortable with is taking steps in faith. I know that no matter what comes my way I will have enough hope to endure.

"Our Hope Endures" ~ Natalie Grant

You would think only so much can go wrong

Calamity only strikes once

And you assume this one has suffered her share

Life will be kinder from here

Oh, but sometimes the sun stays hidden for years

Sometimes the sky rains night after night

When will it clear?

But our Hope endures the worst of conditions

It's more than our optimism

Let the earth quake

Our Hope is unchanged

How do we comprehend peace within pain?

Or joy at a good man's wake?

Walk a mile with the woman whose body is racked

With illness, oh how can she laugh?

Oh, 'cause sometimes the sun stays hidden for years

Sometimes the sky rains night after night

When will it clear?

Emmanuel, God is with us

El Shaddai, all sufficient

We never walk alone

Here Lizard, Lizard, Lizard

2009-01-27T11:53:00.015-05:00

There was a passel of lizards in my dream last night ~ clearly they were trying to deliver a message. I looked up their animal totem meaning to give me insight and here is what I found.

Lizard totem tells me to listen to my own intuition above anyone else's.
It can show me how to break from the past by letting go of old ideas or negative behaviors which endanger my growth.
Lizards are experts a subtle perception.
Lizards reveal hidden messages through the dream state.
They prompt the energy of change.

Ufff ~ what an intense message ~ looks like I need to start writing down my dreams no matter how bizarre they might be! Also, interesting that a lizard can lose it's tail and grow another one in it's place ~ hopefully I won't grow a brain tail again. Speaking of sleep and dreaming I am finally beginning to dream again and it's getting a wee bit easier to fall asleep. I think I just need to be patient with the whole healing process. I wonder how long it's going to take before my brain has found a happy medium.

Forget Me NOT

2009-01-18T20:16:00.003-05:00

I just finished reading another inspiring book ~ Forget Me NOT by Jennifer Lowe-Anker. What an incredible journey the author has had thus far ~ her strength and courage have inspired me to live more in the moment and get started on my own memoir. Ever since I picked up Ghosts of Everest I have been spellbound with the mountain and the mountaineers who climb the highest peak on the planet. You know, you've probably read about many other blogs where I have yammered on and on about Everest (29,035 feet) ~ but seriously, I can't help myself. This feeling that wells up inside me when I open up a book about someones journey up the mountain is indescribable.

I have some theories ~ maybe my brain is re-playing some heart memories of some distant relative who climbed Chomolunga-The Goddess Mother of the World. Perhaps I identify with the incredible endurance of the human spirit to keep moving forward even when you have nothing left to give. Anyway, with each Everest book I have read I have learned about the greatest mountaineers on the planet. Their stories are intertwined in the brotherhood of the rope.

One climber in particular I have grown to greatly admire and respect ~ Conrad Anker. Not long after he discovered George Mallory's body on the North side of Everest he was in a deadly avalanche in which he narrowly escaped. His best friend, Alex Lowe, and Dave Bridges lost their lives that day. Since that tragic day, Conrad has gone on several other expeditions, has started a Khumbu Climbing School and married Jennifer Lowe-Anker.

So, this weekend I was up in the Keene Valley with some friends at the 13th Annual Mountainfest ~ both Conrad and Jennifer Lowe-Anker were doing a slide show presentation about her book and Conrad's expeditions. I had both of them sign some books ~ it was amazing meeting them both! I also had a chance to go on a snow-shoeing outing ~ shhhhhh don't tell my surgeons. There wasn't anything on my discharge papers that said 'no snow-shoeing' ~ it just said no vacuuming for 3 months! Despite the bitter cold ~ it was down in the negatives at night and a high of 13 on Saturday ~ I had a great time this weekend relaxing and breathing in the sweet mountain air.

What A Heartfelt Acceptance Speach

2009-01-13T14:20:00.001-05:00

Each year around Oscar time I try to make an effort to see as many nominated movies as possible. The Golden Globes is a good barometer for the Oscar nominations. I have already seen The Curious Case of Benjamin Button, Burn After Reading, Mamma Mia, Tropic Thunder, The Dark Knight , Kung Fu Panda, Wall-E and The Reader. There are several films on my Netflix list: The Changeling, Rachel Getting Married & Vicky Christina Barcelona. The Academy Awards are on February 22nd so I should have time to see an handful of movies on my wish list.

Some movies have yet to be released in the theaters ~ maybe later this month ~ The Wrestler, Revolutionary Road, Last Chance Harvey, Slumdog Millionaire. I am thrilled that the films that have been heard to be Oscar worthy are not extremely violent in nature this year. I enjoy seeing an intricate drama that really gets under my skin, makes me really think about what matters in life. Last weekend I saw THE READER ~ what an incredibly hard story to tell. Fabulous acting all around, especially Kate Winslet. I am so looking forward to seeing Revolutionary Road sometime, soon. The reunion of Kate and Leo is worth the price of the ticket. When Kate won her Golden Globe for RR I was so touched by her message to Leo ~ I posted her acceptance speech below. She addressed Leo in the beginning of the fourth minute ~ What a connection those two actors have together ~ simply magical!

Ultimate Vertigo Test

2009-01-09T11:22:00.004-05:00

Just search my blog for the words: dizzy, swirly, vertigo, tilt-a-whirl ~ the posts are numerous! One of my motives for going forward with my decompression was to rid me of vertigo. Since my surgery I have not had one incident ~ knock on wood ~ and yesterday I had the chance to prove my theory.

I drove over to my office and had lunch with my co-workers yesterday. Four days out of five, my co-workers would often choose striped or checked shirts to wear. Mind you that I only work with a handful of people. Anyway, when two or more of them would don the stripes on the same day they loved to mess with me by standing side by side. If I looked at them I would get the serious spins ~ it was just awful to have to talk with someone and look the other way for fear of falling over or throwing up ~ yikes!

So, yesterday, three of my co-workers were wearing stripes or checked pattern shirts. And when they all lined up together the wave of vertigo was no longer there ~ woo hoo! Hooray for the little things that can make life so much more enjoyable. I had yet another milestone yesterday when I tried the Wii Fit step aerobics activity. I did so well I managed to unlock the advanced step exercise. I could almost feel my brain singing as the neurons were firing on all cylinders and working correctly.

More later, I was looking out the kitchen window, admiring how warm and beautiful the sunshine looks, thinking I could maybe go for a walk outside today. Then I checked the forecast and saw that 18 degrees with a cold 25mph wind did not sound so enjoyable ~ drat. So, I am off to the gym to practice my new physical therapy exercises ~ enjoy your weekend ~

Brother Fire

2009-01-07T19:31:00.020-05:00

Fire is such a primal energy source and yet I still would fail miserably at being a pyromaniac. Seriously, I have so much trouble lighting a fire in the fireplace. I can get the fire lit, but it fails to meet my expectations ~ how silly is that?! I want to see a blazing fiery furnace, but a good fire takes patience and time. Just because there aren't leaping flames doesn't mean that heat isn't being generated. I know, this is all so elemental, but it made me ponder a bit on this snowy, icy night. Just for the record, no, I have not fallen off the wagon and started using morphine again!

Fire makes me think of one of my favorite Bible stories, The Fiery Furnace. The bulk of the story is about three men (Shadrach, Meshach, and Abednego) who would not bow down and worship a golden statue so the king ordered them to be thrown into a fiery furnace to die. They claimed that God would spare them from death. The fire was so hot that it killed the men who threw Shadrach, Meshach, and Abednego into the furnace. The king was awestruck when he saw FOUR men walking around in the furnace. Perhaps an angel was sent to protect them from death. When the men were ordered out of the fire, not a hair on their head was singed.

I've rambled on again ~ surprised? But really, I learned something from brother FIRE today, even if there aren't raging flames, energy is still being created. It mirrors my life right now ~ my steady recovery. I might want an intense flame, but in reality I have red coals, providing a steady flow of heat. It's so painfully hard to pace myself in this recovery process. I don't feel pain until I have waaaay overdone it. I keep having to remind myself that this is going to be a slow process. Thank you FIRE for subtly reminding me and teaching me to be more like the slow burning coals.

Happy Monthsary!

2009-01-06T18:08:00.016-05:00

How could a month passed by so quickly ~ one breath at a time. It's been a month since my brain lift ~ I survived Christmas and New Years Eve. I really don't have any complaints. My recovery is moving along at warp speeds. According to my husband, AKA Warden Bubba, I need to park it and slow down a bit. In theory, that's good advice, but he is out of the house 40 hours a week at work and I no longer require any caretakers ~ you connect the dots.

I started physical therapy and am doing quite well. It's such a humbling experience to pick up three pound free weights and do bicep curls when I used to curl 10-15 lbs before the brain tail hurled me down a dark and twisted path. The hand bike was the most challenging exercise I did today at PT. My session finished up with the balance board ~ man was that fun! Having vertigo was one of my chief complaints prior to surgery and I thought I might never feel balanced again. I have been working on the balance activities on the Wii Fit and I have already seen some improvement.

Baby steps ~ one day at a time ~ slowly I will get my full strength back again. For a year before brain surgery I was growing my hair out so that I would have an adequate comb-over and today I had my hair cut. My hair stylist was so gentle and made extra care not to rake the comb over my zipper scar. She cut off about 2 inches and evened everything up a bit. We decided to wait until the spring before jumping into a new style. She commented that I had so many hospital chemicals all throughout my hair still ~ it will take several more weeks for the morphine and anesthesia to make it's way out of my system.

There's a nor'easter headed our way tonight ~ snow and ice expected overnight and throughout the day tomorrow. Planning on chilling on the couch and relaxing all day long ~ hey ~ maybe I will even dive into studying again for my SQL exam ~

What's Your Status?

2008-12-28T20:57:00.013-05:00

So how long can I use the 'brain surgery' excuse for not blogging nearly enough? I am way overdue for a status update, right? Well, for starters, the Wii has officially kidnapped my children. They love the Wii Fit games and spend pretty much all waking hours learning new skills. We have all had fun playing the games, although, as you can imagine, I am banned from playing most of them for a great fear of disturbing the healing zipperhead!

Physically, I feel like my strength is returning with the passing of each day. Any pain in my head/neck can be taken care of with some Advil and/or a muscle relaxant if I am having a really tough day. But seriously, I just had brain surgery, shouldn't I be in excruciating pain? Nope ~ can't explain it other than prayers have been answered and I have a wicked high tolerance to pain ~ what a blessing! I am hoping to start driving this week, even if it's a trip around the block. I know that mentally I am coming around because I have started compiling lists of things I want and need to do already.

Many people have asked me if I can tell if my symptoms from Chiari are gone now and my answers are still a little on the vague side. It's hard to tell, but I can say that the vertigo seems to be gone and the crushing Chiari headaches. My short term memory seems to be returning, too. I think I am still existing in the decompression honeymoon phase. How do you go back to 'normal' after brain surgery? What is normal anyway? My main goal going into brain surgery was to survive ~ keep breathing ~ choose life. So, since I seem to have accomplished the basics, now what?

O LORD, you have searched me and you know me

2008-12-24T10:48:00.005-05:00

I have found it particularly difficult to get into the Christmas spirit this year. All things considered, it's only been three weeks today since I became a zipperhead! This morning when I arose, it dawned on me ~ what is the real spirit of Christmas? The answer is painfully clear ~ the birth of the Lord's only Son ~ JESUS. Personally, I know if it were not for my faith and belief in Jesus I probably wouldn't be sitting here blogging today. Faith and prayers continue to heal me from the inside ~ out. Wishing you all a very Merry Christmas. May you have a renewing of strength and hope this Christmas season.

Psalm 139 New International Version (NIV)

1 O LORD, you have searched me and you know me.
2 You know when I sit and when I rise; you perceive my thoughts from afar.
3 You discern my going out and my lying down; you are familiar with all my ways.
4 Before a word is on my tongue you know it completely, O LORD.
5 You hem me in—behind and before; you have laid your hand upon me.
6 Such knowledge is too wonderful for me, too lofty for me to attain.
7 Where can I go from your Spirit? Where can I flee from your presence?
8 If I go up to the heavens, you are there; if I make my bed in the depths, you are there.
9 If I rise on the wings of the dawn, if I settle on the far side of the sea,
10 even there your hand will guide me, your right hand will hold me fast.
11 If I say, "Surely the darkness will hide me and the light become night around me,"
12 even the darkness will not be dark to you; the night will shine like the day, for darkness is as light to you.
13 For you created my inmost being; you knit me together in my mother's womb.
14 I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.
15 My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth,
16 your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.
17 How precious to me are your thoughts, O God! How vast is the sum of them!
18 Were I to count them, they would outnumber the grains of sand. When I awake, I am still with you.

By Your Side ~ Tenth Avenue North

2008-12-20T13:40:00.001-05:00

The Christmas season is filled with every emotion imaginable. For some, it is a time of sheer joy and happiness ~ for others time of deep sorrow and despair. The song I posted above is a gentle reminder of the true meaning of Christmas. God sent His only beloved son to earth to die and rise from the grave so that we can live with Him in heaven some day.

If you are feeling a bit down and depressed during the holiday season, I pray that you find renewed hope in life. Know that you are never alone. Take a moment to listen to the song I posted above ~

Season of Healing

2008-12-19T13:51:00.009-05:00

A friend of mine sent me a really neat e-mail message the other day that really resonated with me. I have pasted it below. What really got me thinking was the metamorphosis of my zipperhead. If you've been reading my blog, you have seen the picture posted of my newly shorn head. It's been 16 days since my surgery and I have healed so well, my hair is growing back quickly. I guess what I am trying to say is we all see things differently.

An innocent web surfer who would stumble upon my picture might gasp in horror at the sight of my zipperhead. But to me, friends and family, who have walked along side me during my chiari journey might view my zipperhead differently. To me, it's definitely a victory badge ~ a sign of the end of one journey and the beginning of a new, healthier one. A wise friend of mine referred to my scar as 'a line of strength and determination' ~ I really like the sound of that!

There was an Indian Chief who had four sons. He wanted his sons to learn not to judge things too quickly. So he sent them each on a quest, in turn, to go and look at a pear tree that was a great distance away.

The first son went in the winter, the second in the spring, the third in summer, and the youngest son in the fall.

When they had all gone and come back, he called them together to describe what they had seen.

The first son said that the tree was ugly, bent, and twisted.

The second son said no it was covered with green buds and full of promise.

The third son disagreed; he said it was laden with blossoms that smelled so sweet and looked so beautiful, it was the most graceful thing he had ever seen.

The last son disagreed with all of them; he said it was ripe and drooping with fruit, full of life and fulfilment.

The Chief then explained to his sons that they were all right, because they had each seen but only one season in the tree's life.

He told them that you cannot judge a tree, or a person, by only one season, & that the essence of who they are and the pleasure, joy, and love that come from that life can only be measured at the end, when all the seasons are up.

If you give up when it's winter, you will miss the promise of your spring, the beauty of your summer, fulfilment of your fall.

Moral:

Don't let the pain of one season destroy the joy of all the rest.

Don't judge life by one difficult season.

Live Simply.

Love Generously.

Care Deeply.

Speak Kindly.

Leave the Rest to God.

Happiness keeps You Sweet, Trials keep You Strong, Sorrows keep You Human, Failures keep You Humble, Success keeps You Glowing, But Only God keeps You Going!

Blessing In Diguise

2008-12-16T10:36:00.009-05:00

OK, finally I was able to get upload images from my 3D CT scan of my head. How surreal is this to get this up close and personal?!!! My intention in publishing this beautiful pic of my head wasn't to freak any of you out, but from a medical miracle perspective.

The C1 vertebrae is the tiny one at the base of my skull. My surgery pretty much did away with that vertebrae, leaving the C2 to hold my head up on my shoulders. Remember how I mentioned that my C2 was freaky big? Well look at it ~ it's bigger than bot the C3 and C4 put together! Talk about a blessing in disguise. Clearly this is a birth defect that I had never known about or seen until now. In looking at the big picture, the fact that my C2 is mis-shapened and clearly overdeveloped, I have a good chance of avoiding the fusion surgery later.

When Doubt Creeps In

2008-12-14T08:49:00.022-05:00

Last night was the first night since my surgery that I can say that I got a good night of rest. When I awoke this morning, for a second, I totally forgot that I had even had surgery.

Shortly after awaking, I stumbled down stairs to make a strong pot of coffee. As I was filling up the pot with water a speck of red caught the corner of my eye. I peered out the kitchen window and saw the most brilliant cardinal perched on a frozen tree in our neighbors back yard. In an instant, I felt the hand of God on my left shoulder and the words, "It's going to be all right!". Then the words of Amy Grant's song, All Right. started playing in my head:

It's going to be all right, you give me what I need ~ That it's all right what may come. What strengthens hope my eyes will never see.

Just this morning as I was washing the misty visions of sleep away, the doubt was seeping in. Making me second guess my decision to have brain surgery. Why in the world would I put myself all of this pain and rehab? Couldn't I have lived with my symptoms forever, learn how to deal with it? And then, the vision of the cardinal ~ bold, scarlet, standing out in sharp contrast against the icy background, clear and inescapable. If you have been following my blog for a while I have mentioned the symbolism of the cardinal many times. Whenever I see them they send me powerful messages right on the spot.

ALL RIGHT ~ Amy Grant

Looking out to the hills

To the setting sun

I feel a cold wind

Bound to come

Another change

Another end I cannot see

But your faithfulness to me is making it

[Chorus:]

All right

I fall down on my knees

Tell me that it's all right

You give me what I need

Years of knocking on heaven's door

Have taught me this if nothing more

That it's all right, what may come

I've heard it said

When the river's running high

You get to higher ground or you die

Well muddy waves of pain

Washed over me

And it only made me see it's gonna be

[Chorus]

When will I learn there're no guarantees

What strengthens hope, my eyes have never seen

But it won't be long

Till the faith will be sight

And the heavens will say

It's all right

[Chorus]

All Right - Amy Grant

Then, There Was Before Me An Open Door

2008-12-12T09:39:00.005-05:00

Hi, my name is Lacie and I am no longer an addict. It's day two of no morphine and even though I still have a wee bit of the shakes my head feels so much more clear. I have been taking Advil for the pain as needed and it seems to be working. It's only been 9 days since my brain lift and I am already bored to tears ~ seriously!

We had a wicked ice storm last night and I was awoken from sleep every hour with the crashing sound of falling limbs. Thank goodness we didn't lose our power. The sleet has changed over to snow this morning and I have to say it's beginning to work on my non-existent Christmas spirit already. I apologize in advance for a scattered blog, but the brain isn't firing on all cylinders just yet. So, apparently I blogged at least once while I was in the hospital. I remember writing, but have no idea what I said. The funny thing was the pulse-ox meter that was on my finger was beeping like crazy the whole time I was tying, because I was supposed to be still. I am still trying to unwind all the thoughts in my brain about all the experiences I went through over the past 2 weeks.

One feeling that was predominant through everything was a sense of peace and calm ~ completely. Prayers were definitely heard and answered. I knew I was being cared by the best of the best chiari docs and had no fear. Even on the worst days I knew that if I just kept breathing I would certainly get through it all. ~sigh ~ So, I can't officially wash my hair until 2 weeks post-op ~ next Wednesday, 12/17 ~ last night John and Mom managed to throw some plastic bags over my incision and were able to wash what hair i have left. The pony tail hair doo is beginning to get very fashionable around here. OK ~ need to lay down for a while ~ more later ~ thanks so much for all the comments and messages. Who knew I had such a big fan club. Love you all ~ send me some ideas to quench this boredom, please ~

Checking Out and Heading Home

2008-12-09T11:24:00.001-05:00

Sorry for the lack of updates. The last day and a half has been very busy and without wireless access.

Monday morning we were hoping to get discharged from the hospital so Lacie could make her PT appointment on Long Island at 11 a.m., but things did not go quite as expected. Lace woke up feeling dizzy and sluggish and we weren’t sure at first if she was even going to get discharged. Dr. Stasi came by around 9:30 and looked her over. His thoughts were that this was a case of perhaps overdoing it a bit the day before combined with her also going off her steroid medication the day before. We hoped he was right. The hospital PT specialist also met with her and was very pleased with Lacie’s progress.

So, after a few delays, we were discharged a few minutes before 11 and we hustled over to the PT appointment. This took longer than expected as the directions were terrible and a 15-minute drive took almost an hour. By the time we arrived, Lacie was feeling quite nauseous from the drive and needed a rest. The doctor was quite gracious, helping her to lie down in a private room and talked to us about the therapy procedures while she rested. He took her blood pressure and it had dropped to around 60 so she needed some serious time to rest and get her blood pressure up while we waited.

We returned to Variety House for the afternoon and evening and she took a nap and slowly improved enough to eat a little dinner and watch a movie before an early bedtime.

Today she is doing much better. We are departing the Variety House around noon to return to Albany today. Please pray for a safe trip and for Lacie to feel well while we are travelling.

Sunday Update

2008-12-07T17:08:00.004-05:00

Things continue to go well. Lacie had her IVs removed overnight and is now running around completely wireless, which I imagine is a big relief.

Lacie's mom Sandy (pictured) departed late this morning to head back home to help out with the kids for a few more days before we return. She was a huge help while we were here as she and I often split time with Lacie so as to give one another a break.

We are hoping to be discharged early Monday morning so as to make a physical therapy appt. here on Long Island at 11 a.m. Monday. TCI is now referring their patients to a local PT for one appointment with a PT that they are working with that is trained in Chiari-related therapy. This is great news to us because it seems that most (if not all) of our Albany-area PTs know nothing of Chiari syndromes and how to treat them. The idea is this guy treats her once, shows us what to do, and we bring that information back to our Albany PT to show them what to do. Hopefully they'll even give us some handout materials.

We may also drive back home Monday afternoon as there is some bad weather looming for late Monday night all the way through Thursday. At first they were hinting at a small blizzard, but now it looks like one of those snow/rain messy mixes. I'm sure it could change again depending on the storm track.

That's all for today. Giants lost. Bah-humbug!

Walking Tall

2008-12-06T15:02:00.003-05:00

Well, as you can see from the picture, at least some of us are walking tall! But seriously, Lacie is doing great and has been out walking laps around the NSCU twice today, two laps the first time, and three the second. She got a sponge bath late this morning and was able to put some regular clothes on, which I think was a big relief. Her mom also combed out her hair and gave it some newfound style.

We are still waiting for a transfer out of the NSCU, which is supposed to occur later this afternoon. The NSCU is short-staffed today and they are justifiably giving more attention to some of their other patients - some of them are in pretty rough shape and most are older or elderly. There is one guy whose head is practically entirely wrapped in gauze - poor fellow! Fortunately, Lacie's nurse today, Linda, is one of the better ones, and she has been in good hands while we wait.

Friday Night Lights

2008-12-05T17:54:00.005-05:00

So, as you saw, Lace was feeling well enough to get online for a while and do a brief post as well as review all of your comments. My blogger account does not have permission to post the comments, so they've all been pending for a few days. Sorry about that!

Earlier today Lace was out of bed and walked around the room and out into the hallway just a bit with a walker. She did real well and probably could have gone further but they are being conservative with her because her sodium levels are still a little off and they want to get that corrected before going hog wild with the activity. Also, because her levels were still not where they want them to be, she will be spending tonight again in the NSCU. But we expected 2 days here from the beginning, so no worries. She continues to make good progress and is looking pretty chipper this evening. I am optimistic she will be out of the NSCU tomorrow and she will likely also lose her catheter then and be walking the halls. So, that is a preview of tomorrow.

Also, below are some pics of Lace. The shot of the back of her head is from the day after surgery when they changed her bandage dressings. The other two shots are from today and that is the ace bandage "turban" they've had her wearing all along. Kind of looks a little like Bert (from Sesame Street) meets I Dream of Jeannie with her hair tumbling out the top!!!

Rescued

2008-12-05T16:49:00.000-05:00

Just a quick post to let everyone know that John has been reading all of your wonderful comments to me and it's cheering me up a bit. I was incredibly sore and stiff this morning. Pain killers setting in so I had better sign off ~ more later, pressing on ~ Lace

Wrapping Up Day 2

2008-12-04T21:30:00.005-05:00

It's 9:30 p.m. and Lacie is tucked away sleeping next to me in the NSCU. Looks like the staff here has a pretty loose protocol on the visiting hours so I am planning on staying the night. There is a chair in the room that reclines, so it shouldn't be too bad and I hope to maybe get some shuteye myself.

All in all it was a pretty good day for Lacie. She was up out of bed twice and sitting up in the chair (now my chair!) for an hour or so each time. Also lots of neck stretching and massaging throughout the day. She's still not eating much but hope that picks up tomorrow. Nausea has not returned, so that is good. She's very tired as she apparently did not get much sleep last night in the noisy one-room PACU, so I expect her to sleep long and hard tonight.

Not much else to report. I did want to share an odd tidbit with you. I'm sure most of you have seen "When Harry Met Sally," which takes place in the NYC area. There is a scene where Harry is talking to Sally in bed and he mentions a certain cookie. Remember? Mallomars. As a pseudo-Texan, I had never heard of it. I even looked around for them in several upstate grocery stores some years ago and still seem to look for them in passing as the thought of the movie always makes me grin. Well, last night I was in a Long Island grocery store and lo and behold, there they were. And not just a few boxes, mind you, but an entire pyramid-style end cap display full of them! I couldn't help but chuckle a little. They are made by Nabisco, so I don't know why they are not more widely available. But according to Wikipedia, they are sold only in the colder months and likely in more northern regions for reasons so that they do not melt. For those of you who don't know, they are kind of a snobby version of a smore ~ graham cracker bottom, big dollop of marshmallow on top, and the entire thing is dipped in a chocolate shell. Sounds pretty good, huh?

Good night, and enjoy your milk and cookies.

The Morning After

2008-12-04T10:12:00.003-05:00

Sorry, but I did not get a chance to do another post last night. She looked good when we visited her in the PACU again from 7:30-8 p.m. After that we were told we could not see her again until she was transferred from there to the NSCU (NeuroScience Care Unit) the next morning. So we packed it up and went back to Variety House for the night. I had a couple errands to run for Lacie, picking up a special pillow and some drinks so I did not get "home" really until after 10 when I hurriedly made a few phone calls to family and scarfed some dinner before turning in.

We arrived at the NSCU at 10 a.m. when visiting hours "officially" start. She was pretty groggy and nauseous from the anesthesia when we arrived but that quickly improved. Dr. Verma visited us first and changed her dressings and showed us how to stretch, massage, etc. to increase her mobility. Dr. Kula came by shortly after that on rounds. He is the neurologist from TCI. He seemed pleased with how she was doing. They gave her something more for the nausea and that passed shortly thereafter.

Around noontime they moved her out of the bed and she is now sitting up in a chair and getting more active. She is now working on an exciting lunch of Coke and cherry italian ice.

All to report for now.

A visit to the PACU

2008-12-03T18:01:00.002-05:00

FINALLY, at 5:30, they called us to the desk for a brief visit to see Lacie in recovery in the PACU. 10 hours after she went in for surgery. She looks great. She was asleep when we arrived but quietly talkative in a few moments and in good spirits, all considered. Compared to her last surgery, she really does look great. Last time she had a terrible allergic reaction to the tape they put on her face and that combined with her laying face down for the surgery, she was quite puffy for a couple days. But this time she is showing only a minimal amount of swelling so they must have done something different. She will be very happy about that come tomorrow. She can then spend more time fussing about her hair instead!

We will get one more visit tonight between 7:30-8, which is general visiting hours for the PACU. She will be staying there overnight (with no visitation allowed) and tomorrow morning she will be moved to a "step-down" room for the next two days which is a private room where she'll have more care than in the regular part of the hospital and we will get to see her as much as we want.

I'll give another update later this evening after the next visit.

For Lacie

2008-12-03T13:28:00.003-05:00

Good news from John! We all continue to pull for Little Lacie, for a successful surgery and a full and speedy recovery.

I'm starting to get names and thoughts for Lacie on the "wigs4lacie@yahoo.com" email address. Thank you all! I started a group for Lacie in Facebook - if you have a facebook account - go join it!

Some have suggested hats or hooded sweatshirts. I think both are great ideas! Let me know if you are interested!

God Bless, and lets keep the good Lacie vibes coming!

Report from Dr. Milhorat

2008-12-03T12:44:00.002-05:00

Good news, Dr. Milhorat just came out to the waiting area and spoke with Sandy and I about the surgery. The hard part of the surgery is now over and they are just finishing stitching her up. She should be out and ready to see in an hour or so.

The surgery went very well. They did not have to remove as much material as originally anticipated. In fact, they left her c2 pretty much intact, removing primarily a section of c1 and portion of the skull. he also cauterized the cerebellum tonsils a significant amount. All in all, he felt like her CSF flow from the spinal column to the brain has been very much improved and is very optimistic about her recovery. Thank God for these good blessings! And thank you everyone for your continued prayers!

There is still some concern about the cranial settling that is caused by her Ehlers-Danlohs Syndrome, but since her recent low bone density scan prevented her from having the spinal fusion done, all we can do is wait and see. It may be fine he said, only time will tell.

I will post another update around mid-afternoon after the surgerical procedures have officially ended and we have seen Lacie.

The long wait

2008-12-03T11:29:00.003-05:00

So. Here we are. There's really not much news to post, but figured I owed y'all at least an update. Lacie is currently in surgery. We (Lacie, me and her mom Sandy) arrived at the hospital bright and early at 5:30 a.m. Surgery was scheduled to start at 7:30. Everything pretty much went to spec with the nurses shuffling Sandy and I out of the pre-op area at around 7:15 so they could get Lacie into motion.

We checked into the surgical waiting area and here we wait. The waiting room is really nice. Last year it was under construction so we were in an older space, but this year the new space is open and everything is comfy and new. Carpet. LCD TVs. Wireless. PC available. Free coffee. We were issued our pager at around 8 a.m. (they page you shortly before the doctor comes out to give you the update after surgery) and we went downstairs for some breakfast and a stretch of the legs.

Not much else to report other than we expect her to be out of surgery sometime around 2 p.m., so check back sometime shortly thereafter for an update. Keep those prayers a comin'! Compared to last time we were here, both Lacie and I were remarkably at ease with the situation when she went into surgery. Prayers are working. And we know she is in good hands.

Update from Lacie ~

2008-12-02T19:12:00.001-05:00

The last couple of days have been a whirlwind! On Monday morning, I had about an hour of MRI’s followed by pre-op stuff at the hospital. In the afternoon I had a couple of appointments at TCI. I have been feeling the prayers ~ keep them coming. I am seriously humbled by the effect of prayer. I have felt totally at peace, no nerves what so ever. I am actually feeling a bit giddy ~ finally I have arrived for brain surgery and I am looking forward to getting this all behind me.

We were in and out of TCI in a record hour and a half ~seriously wonderful. After my nurse practitioner took my vitals she walked me in to meet with Dr. B. It was so nice to sit down with him and chat about my surgery. I really haven’t spoken with him since my initial visit back in May of 2006. He answered all my questions and outlined how the surgery would go. Seeing pics of my 3-D CT scan were really cool. Something Dr. B pointed out to me was that I have freakishly large C2 ~ can you see my shocked expression? Anyhoo, having this large C2 is a great advantage, because it will help hold my head up after the decompression. Dr. B decided to go ahead with the invasive cervical traction to see if I could benefit from the fusion in the future.

So, I was instructed to not have anything to eat or drink after midnight on Monday. When I got to the hospital at noon for my same day admission they couldn’t find my name on the list. After a couple of phone calls my docs were located and my procedure was confirmed for 1pm. As I was getting into my oh so stylish green hospital gowns the fire alarm went off. The nurse came over and said not to worry, there was smoke located in the building, but thankfully not in our area of the hospital. So, I walked down to the OR, when I got there they had discovered that the bed didn’t work and were in the process of switching it out. I answered a bunch of questions with the anethesiogist while he was putting my IV in. Once they were ready to go I got some Twilight put into my IV and I was unconscious for a couple of minutes. When I woke up they started putting weights on the traction unit. Basically I had two screws in my temples with a big bucket handle attached. It took about 25 lbs of weights before I felt any relief in my headache. So, that said, I have cervical cranial instability and would benefit from the fusion surgery at a later date.

Thanks so much for all of the e-mails and well wishes, I had no idea what a big fan club I have! John will keep you posted as the day progresses tomorrow and I will be back on line as soon as I can type. See you on the other side of decompression.

And... we're back!

2008-12-01T10:57:00.003-05:00

Hi. John here. Just wanted to do a test post and make sure this is all working fine and dandy before the big surgery Wednesday.

Not much exciting news to report, which I guess is a good thing! We drove down yesterday afternoon and stopped and had a really nice lunch with Darla and Bobby, our new fellow Chiarians from the New Paltz area. Darla had her mini-PFD and spinal fusion about a month ago. She looks great and is doing so well ~ she is truly an inspiration to us. Her spirits are great and it is so invaluable to both Lacie and I to have found a new friendship in this strange but wonderful bond we have through the Chiari community.

The traffic was utterly horrible on the way down. Note to self (and all readers!) - do not attempt to travel the NYS thruway south on the Sunday after Thanksgiving if it can be at all avoided. I think there were more license plates on the road from NJ, CT, & PA than NY! After getting off at Newburgh exit for our lunch get-together, we took a tip from Bobby and cut East on I-84 to I-684, which takes you down to some other highways that eventually patch you into I-278, which brings us into Brooklyn where we had a relaxing supper with the Dawsons, who were also kind enough to put us up for the night. Thanks to Bobby for the driving tips. Other than one bottleneck at the end of 684, it was pretty smooth sailing.

I'm currently in the Pre-Admission Testing area where Lacie is doing paperwork and other pre-op related stuff. We had the MRI earlier this morning. After this, we are off to check in at Variety House, then a quick lunch and over to TCI for an afternoon appointment. If history dictates, TCI will likely suck up the rest of the day like a nail in an expiring radial tire. Any of you who have been there before know that they always seem to be understaffed and behind in the daily schedule. I think we waited over 3 hours there the first time. But it is worth the wait, and we thank God that He has led us there.

We Could Do Something Big

2008-11-28T10:29:00.004-05:00

I just love the way Chandler and Joey think ~ they get all fired up about doing something big like climbing Mount Everest ~ then reality settles in and it's downgraded to renting the DIE HARD DVD! Well ~ me, when I say I am about to do something monumental, I am all about the follow through. Brain surgery, let's do this thing, now! Less than five days and I will be on my way to being on the other side of a PFD. Not to be confused with a personal flotation device ~ lol!

Random

2008-11-24T23:45:00.001-05:00

I know this is totally random ~ but these pics just made me laugh and I wanted to share with you!

Kilimanjaro

2008-11-21T19:30:00.000-05:00

A very wise chiari friend of mine told me that when she was getting ready to have her brain decompressed she planned her dream vacation. That way, when she was feeling miserable she would have something to look forward to. She suggested that I do the same. The task at hand is harder than it might sound. All of the 'road blocks' immediately come to mind trying to squash my dream like an unwelcome bug before it's come to life! Where will I come up with the money for a trip? How will I take the time off? Will I ever be healed enough to do what I want to do?

One of my dreams is to summit Mt Kilimanjaro. I was intrigued when I read Seven Summits a couple of years ago. I am fascinated that you start out in the rain forest and end up in Arctic like conditions on the summit. The book I am reading, Learning to Breathe, Alison Wright, the author's dream when she is recovering is to summit Mt Kilimanjaro on her 40's birthday. Just the other day I saw the story about Ann Curry climbing Kilimanjaro, too ~ coincidence? So ~ yeah ~ Kilimanjaro's on the list. I guess the biggest question is who can I wrangle to go with me on the journey? Any volunteers?

Guest Blogger is Back

2008-11-18T14:31:00.003-05:00

Hi! For those of you not familiar, I'm Lacie's friend Erica from several jobs ago, almost several lifetimes ago. We went on a crazy road trip in the middle of Pennsylvania to see the X-Files movie together. I'm a big fan of Korean Drama and a still bigger fan of my three kids. Lacie, who can be as obsessed and as kooky as I, is a dear friend.

But if you are a friend of Lace's you understand that she is one of those people who makes connections and is fierce about keeping those friendships and maintaining them.

I've written about Little Lacie of the Enormous Brain a few times on my blog. Lacie is probably my most avid comment-writer, and being the comment and hit whore I am, it is always appreciated.

Many have been privileged to read and be part of this tiny little woman's incredible journey. Out of her generosity, and let's face it, her need to make sense of this whole process, she let us in. I've known her for, I don't know, going on 10 or 11 years now, and the way she has carried herself throughout has been an inspiration to me as I know she has been an inspiration to countless numbers.

If you are a regular to Lacie's blog, you will know that she is going in for her surgery the beginning of December.

Today's request/plea though is this: I want us to buy Lacie some wigs. She has resoundingly approved of this idea and fully intends to wear whatever we buy her. Maybe I can get her to take pictures after so we can see how well they suit her.

We can get some lovely things here at a very reasonable price, or you can be more conservative here, but slightly more expensive. While I may look for something in a Scully fashion, I might decide to pander to Lacie's geekier side and get The Matrix Twins Wig. :)

Here's what I would like you to do: if you want in, if you want to in some small way, help support this beautiful woman who has inspired and moved us, email me at wigs4lacie@yahoo.com. I will coordinate the types of wigs so there is no duplication, tell you where to ship them to make sure they get to Lacie so she can smile and feel your love. If you can't afford a wig, which is cool, email me and I'll collect cards, letters, emails, and love for her and deliver them in a happy package to her door.

Cards and words of encouragement for her husband John would be a great idea too. I know what it's like to have a spouse in the hospital. I know what its like to carry the load at home, caring for the kids, working, rushing to the hospital, and worrying all the time.

Let's show Lacie and her family how much she has touched our lives, while she Lives Loves and Laughs.

United As One Team ~ Reaching For Our Dream!

2008-11-16T09:59:00.011-05:00

What whirlwind of a weekend! Friday night we took the girls out of school around noon and headed down to New Jersey for the Eastern Regional Cheerleading competition. We were all decked out in our silver, blue and white ~ cow bells and banners in tow. Hannah's Jr Pee Wee Large team did awesome ~ we are so very proud of her and her team for going out there and giving it their all! Out of 15 teams, we placed 4th ~ we missed our Disney invitation by two places. There were lots of tears shed ~ the girls really had their hearts set on Disney, but I know that we will get there next year!

On the way home we stopped in a quaint little New Jersey town and had a late lunch with a friend from high school. It's been so fun reconnecting with long lost friends ~ you know, life is just too short not to! When we headed back home we drove right through a band of heavy rain and tornado warnings. My head was feeling like it was going to explode by then and I just couldn't wait to get home and get in bed! Today we are staying around the house to relax. Did I mention that there is snow in the forecast for the next couple of days? Seriously, just yesterday it was a balmy 73 degrees!

The Bison ~ Are Back ~ And Ready To Compete

2008-11-12T22:27:00.006-05:00

It's that time of year ~ again. Hannah's cheer squad is competing in the Eastern Regional competition on Saturday morning. The team has improved 500% from last year and have really kicked it up a notch in their routine. I am so very proud of Hannah! She has worked really hard to perfect her cheers and routine and it really shows! Her team will be competing against 14 other squads ~ reaching for a team invitation to the national competition at Walt Disney World in a couple of weeks. They will only take two teams to move on to the final competition.

Did I mention that WHEN they go to Disney and compete ~ December 8th ~ there's a huge chance that I will still be in the hospital recovering! What are the odds? Well last time I was connected to a morphine pump the GIANTS won the Super Bowl! Wish us luck ~ it's going to be a big day ~ I can feel it! GO BISON!

Ducks In A Row????

2008-11-11T18:20:00.006-05:00

The last 24 hours have been an emotional roller coaster. I sent off my short term disability info to be filled out for my upcoming surgery and found out that the RN who is taking care of my case at TCI is out of the office. Ok ~ I can roll with that ~ sent my info along to the person who is covering for her. I received an heart attack worthy e-mail yesterday that basically said that they couldn't fill out my paperwork, because I had not seen a doc at TCI in over 6 months. GULP!!!!

Needless to say I had a moment or two of panic last night. Holy HEAT ~ does this mean they might cancel my surgery??? They specifically told me that I didn't need another appt before my surgery ~ OI!!! So I fired off an e-mail with all kinds of questions for said representative asking what can I do to remedy this problem. This morning I received a call from TCI. I recognized the area code on the caller ID at once. Before answering the phone I took a deep breath and just turned over the whole situation to God. Seriously ~ what else could I do?

So it turns out, the woman I spoke to didn't even know that I was scheduled for surgery in 21 days ~ she couldn't even locate my file!!!! So I filled her in on the details and what was going on with my case. ~ sigh ~ I even offered to find the paperwork that was filled out earlier in the year for my detethering so that she can duplicate the info on the current forms. I feel so for everyone who works at TCI. They seemed so over worked and under appreciated. I know their patient load is hard to keep up with. So, for now, the train seems to have avoided a derailment. I just hope they locate my file before I get there so that there isn't any confusion.

Earlier today I was listening to a song I first heard when I was in college ~ Higher Ways by Steven Curtis Chapman. Again, the lyrics really touched me, softened my heart and changed my attitude that had become bitter last night.

Take a listen for yourself and see if it has the same effect on you ~

Higher Ways (For The Sake Of The Call Album Version) - Steven Curtis Chapman

If I could only fly

I'd go up and look down from the sky

So I could see the bigger picture

And Lord if I could sit with You

At Your feet for an hour or two

I'm sure I'd ask too many questions

'Cause there's so much going on down here

That I must confess I just don't understand

But I have prayed

And at your feet my whole life has been laid

So I wont worry I wont be afraid

'Cause my soul is resting on Your higher ways

Let the road ahead become unclear

I am Yours so what have I to fear

If my soul is resting on Your higher ways

CHORUS

Your higher ways teach me to trust You

Your higher ways are not like mine

Your higher ways are the ways of the Father

Hiding His children in His love

So let it rain

And if my eyes grow dim with tears of pain

This hope I have will not be washed away

'Cause my soul is resting on Your higher ways

Maybe then You will take me aside

And show me the bigger picture

But until I'm with You

I'll be here with a heart that is true

And a soul that's resting on Your higher ways

Steep Climb Up Ahead

2008-11-09T08:29:00.003-05:00

I am all for mental preparation ~ If there's something I have committed to I want to know what to expect. My experiences in the past have gone well when I have faced a dark situation with this attitude,
Hope for the best, but expect the worse.
I know, it sounds a little pessimistic, even for me, but it's the truth. With that said, my sister gave me a book (Learning to Breathe, by Alison Wright) for my birthday that has been a great inspiration to me and I am only half way through the book. It's a story about a photojournalist who found herself in a almost fatal bus accident in a foreign country. I won't give away the whole plot, but she was a breath away from death and chose to live and fight through her injuries to live.

Last night I read a sentence that really resonated with me ~

"Even in the darkness all we can do is keep moving forward."

This reminds me that all I have to do is just keep putting one foot in front of the other and eventually I will find myself no longer in the inky darkness of pain. How's this for perfect imagery, yesterday was cold, windy, rainy, overcast, the sun never came out all day. A super dreary New England day. This morning I awoke to a brilliantly shining sun, crisp, cool air. Even after the darkest night the sun will rise in the East.

So, I am off to church this morning, then Skyler's b-day party followed by the Giant game ~ Hey, anyone out there following college football? How about my Texas Tech Red Raiders!!!

Happiness Is...

2008-11-06T19:38:00.005-05:00

I am learning to find joy in the little things ~ anything to shed light on this narrow dark path. Reconnecting with friends on Facebook has brought me more joy that you can possibly imagine. So ~ what do you say to a friend when you are reconnecting after 20+ years? How do you sum up all those years since high school, since camp, since college?

It's a fine line ~ the boundaries between the safe answers and the raw, ugly truth are fuzzy. I am a straight shooter, maybe it's the Texas blood that pulsates through my veins. It's incredibly hard for me to BS my way through a conversation without mentioning the only thing on my mind, "Hey ~ did I tell you that I am having brain surgery in a couple of weeks?" There is no smooth transition. I find myself not sharing with some, because I know that they won't know what to say in return ~ what do you say? But seriously, it's still me ~ just because my brain is sliding out of my head doesn't define me completely. Although, it has put a damper on my bubbly personality.

Therein is the beauty of friendship ~ those who really know me offer prayers, support, a shoulder to lean on. Friends share life's joys, disappointments, sorrows ~ that's the glue that binds you. Life is messy ~ TRUE STORY ~ no matter what you are going through, no matter how dark and scary, know that if we are friends I will be there for you, no matter what might come strolling down your path. Don't be afraid to share your life, let someone join you in your journey. It makes life more bearable to have a friend walking by your side.

Hope Now ~

2008-11-05T13:28:00.000-05:00

Time has been speeding up for me. My chiari friends have told me on numerous occasions that as my surgery date draws nearer time will speed up. So true and the last couple of months have been a blur. It's like I am on some kind of souped up auto pilot. Sure, I am pretty functional ~ I get my work done at work, keep up with house chores; but I feel as though i am walking around in someone elses body. True Story!

I am trying to stay focused with the tasks at hand for each day ~ it keeps my mind occupied. Although many thoughts take me away from focusing on the Lord, I am quietly reminded with words of encouragement that I am His ~ He is in control. It's a daily struggle ~ surrendering over and over again my fears and anxiety over brain surgery. oi!

I wanted to share the lyrics below of a song that has lifted me up.

Hope Now ~ Addison Road

If everything comes down to love
Then just what am I afraid of
When I call out Your name
Something inside awakes in my soul
How quickly I forget I'm Yours

(PRE-CHORUS)
I'm not my own
I've been carried by You
All my life(

CHORUS)
Everything rides on hope now
Everything rides on faith somehow
When the world has broken me down
Your love sets me free

When my life is like a storm
Rising waters when all I want is the shore
You say I'll be ok and
Make it through the rain
You are my shelter from the storm

(PRE-CHORUS)

I'm not my ownI've been carried by You
All my life

(CHORUS)
Everything rides on hope now
Everything rides on faith somehow
When the world has broken me down
Your love sets me free

(CHORUS 2)
Everything rides on hope now
Everything rides on faith somehow
When the world has broken me down
Your love sets me free

You've become my hearts desire
I will sing Your praises higher
Cause Your love sets me free
Your love sets me free
Your love sets me free

Where Did Autumn Go?

2008-10-30T23:37:00.002-04:00

Do you ever feel like you are running so fast to keep up with things only to find yourself standing still? We had our first snow storm this week ~ big, wet snowflakes. Chiari really messes with my memory, I have an extremely hard time remembering what the date is ~ seeing SNOW fall in October is really confusing! So in an attempt to see things positively, I am praying that we get enough snow fall before my surgery date so that I can go snow shoeing at least once ~ is that so much to ask?

Last night we finally carved our pumpkins and roasted the seeds ~ seriously ~ is it really Halloween already? Time is just flying by!

Sorry for my lack of blogging, my laptop is out of commission and quite frankly I haven't been feeling very well lately. I guess this is a good sign, confirmation that I definitely need surgery and soon. Each headache is taking me one step closer to my decompression...

Chiari Anatomy 101

2008-10-20T18:03:00.012-04:00

I have known about Chiari only since September 2006 ~ yet it seems like a lifetime. I try to stay on top of reading other chiarian blogs and doing research on the internet ~ I came across this neat picture that visually shows you what a brain tail looks like from a bone/brain perspective.
What you are looking at is the back of the head. The cerebellum is supposed to be above the foramen magnum, but a person with Chiari, like myself, has brain matter herniated down through the foragmen magnum into the spinal column. This picture shows what the head looks like after Posterior fossa decompression surgery. The surgical procedure removes bone at the back of the skull and spine so that the brain tail has more room to hang out. Well that's my attempt at a non-medical explanation anyay. I am still hoping there's room in there to request for a memory upgrade during my surgery. Maybe they could upload a kung fu program ~

Cause when I am weak your strength is complete

2008-10-15T16:01:00.006-04:00

It's times like this where I can't find the words to express what I am feeling ~ it's been just all too overwhelming this week. But then I hear a song on the radio and the lyrics seem to speak for me to interpret what's going on in my heart. Something I am learning is that the more things seem to unravel in my life the message that God is sending me becomes clearer. HE continues to provide, continues to sustain me, holds me up, lifts my spirits. I am in awe ~ speechless.

Sufficient - Adie Camp

Hear my heart Lord as I cry out to you

Hear my prayer Lord and carry me through

In your mercy in the promise you made

Be my strength Lord when my strength fades away

Cause when I am weak your strength is complete

It's perfect

Completely all I need

Sufficient for me

Your grace and peace are perfect

Completely all I need

You're all that I need

In my weakness I'm finding your strength

In my sorrow a gentle embrace

Through the seasons of laughter or pain

You are listening When I call out your name

I'll find you when I seek I'll look for you with all of my heart

And I'll find you when I'm weak

Cause you are strong

Hear my heart Lord as I cry out to you

Hear my prayer Lord and carry my through

Carry me through

Sufficient - Adie

New Discoveries Awaken the Muse

2008-10-13T22:10:00.002-04:00

There's nothing like the shock and awe factor to awaken the Muse from her slumber. ~Sigh~ Thanks for all the happy birthday wishes ~ they really made my day. The picture above was the only thing I could think about today. The shock has worn off ~ WARNING ~ if you put your daughter into an MRI machine to capture pictures of her brain, prepare yourself for what might be revealed.

That's Skyler's brain ~ recognize the all too familiar brain tail in there? Hers is minimal ~ 5-6mm herniation. Actually, we haven't even received the official phone call from the doctor yet. I was finally able to open the MRI disk that the hospital gave to me. I immediately e-mailed my pediatrician to see if she had heard anything from the neurosurgeon yet and she confirmed my suspicions.

More later ~ I just wanted to let you all know what's going on on my lil speck on this planet. I keep reminding myself that God doesn't give us more than we can handle. More will be revealed. I just thank God that I know what Chiari is and will make it my mission in life to prevent Skyler from having any kind of brain surgery.

Happy Anniversary

2008-10-08T15:30:00.004-04:00

Today is my 14th wedding anniversary ~ seems like only yesterday ~ I still remember the day this picture was taken back in 1992. I recall thinking how in the world did I find this amazing man in Lubbock, TX of all places. Some say that a picture is better than a thousand words ~ if it weren't for the incredible brain fog I am having today I would ramble on about something quite sappy ~ There are so many things I would like to say but the words just aren't finding their way on here.

I Can't Brain Today

2008-10-06T22:44:00.001-04:00

My brain tail has totally stolen my muse again and replaced it with a swirling, vertigo brain. This slogan ~ I can't brain today, I have the dumb ~ is perfect since I walk around daily in a thick brain fog ~ but the sad thing is, I often scramble the words and it comes out ~ I can't dumb today I have the brain!

I am counting down the days til I go in for surgery! Trying to keep myself busy with life ~ taking it one day at a time and trying to remember what day it is ~ what planet I am on. The girls have their cheerleading competition this weekend ~ a fun filled day of loud cheerleaders and blaring music ~ ooo ooo ~ can't wait. Seriously, I do enjoy watching them perform but could really do without all the activity surrounding the event.

Finding Clarity Through the Fog

2008-09-25T19:52:00.004-04:00

I was driving into work this morning at 6am. It was still a little dark outside and the river road I drive on was shrouded in fog. What images/thoughts come to mind when you think of fog? Does it bring up feelings of fear or dread? For me, I feel energized and inspired by fog ~ I don’t know where the feelings come from ~ but hear me out.

As I was driving along, the imagery of a foggy road actually shed some light on a dark place in my heart. I think of life lessons in parables ~ when you can’t see the way, slow down, be on alert, follow the lines, and use your low beams. Even though putting on your high beams might seem like a good idea ~ yeah ~ more light means I can see better ~ wrong ~ the high beams make the light reflect right back in your eyes and then you can’t see at all.

*Sigh* ~ message heard loud and clear. I’m not going to know what’s just around the next corner and that’s just as it should be. Follow the lines on the road (the truth in scriptures) and enjoy the experience of traveling through a cloud! Just ignore the fact that the brain fog has totally taken over...

Ah ~ yeah ~ still in a place called VERTIGO

2008-09-24T19:00:00.000-04:00

So, what's a girl to do when vertigo comes over for happy hour and decides to stay a while!? Any ideas ~ I welcome them all ~ SERIOUSLY ~ so over the vertigo. I would like to know when vertigo is planning on leaving ~ any time now is good for me! Make sure your stare at the picture above, at least long enough to feel what I have been feeling.

So ~ last weekend was the first ever conquer chiari walk across America. I haven't seen the total numbers of how much was raised on that day, but here in Albany, NY ~ we raised $6,000 just on the day of the event. That's not counting online donations. Thanks so much to all who donated! I was blown away by the number of people at the event ~ over 200 came out for the walk. Even though the walk was a brief lap around the park, the chance to get together with other brain tails was priceless. It was so awesome to finally meet one of my blog buddies ~ D. Hall ~ (that's D. in the middle and a new chiari friend, Nancy) please lift her up in your prayers as she is having surgery on 9/30/08.

My Brain Tail discovery day is coming up this Friday, September 26th ~ it's been almost 2 years since I was diagnosed with Chiari. The friends I have made on line through my blog and yahoo chiari groups have meant the world to me. It's like the Sisterhood of the Traveling Brain Tail. We instantly have a bond and even though Chiari manifests itself differently in each person ~ we understand what it feels like. The support has been encouraging and downright sustaining at time s when I just wanted to curl up and hide under a rock. I laugh and make fun of all my crazy symptoms, but deep down, I am so ready for my real life to begin. Why me ~ why now ~ like my Mom said today, "There has got to be a pony in there somewhere." My response was ~ "Make that a unicorn disguised as a zebra!"

Some of you have asked how I have been feeling ~ truthfully ~ it's been bad lately. Probably worse than I remember pre de-tethering. Between the increasing brain fog, vertigo and headaches, I am kicking myself for scheduling my surgery so far out. December seems months away. I am trying to take it day by day ~ try to look forward to something that will distract me from the harsh reality of brain surgery. Thank goodness for our DVR and all the season of show starting ~ escapism rocks!

Before I sign off ~ I do have a bit of good news ~ my youngest daughter, Skyler, had her consult appointment with a neurosurgeon yesterday. The hair rose up on my neck like a porcupine's quills when we entered the doctor's office. You see, this is the same practice where 'the godfather' practices. Here's the link if you don't remember ~ http://livelovelaugh-lace1013.blogspot.com/2007/07/is-it-there-if-you-cant-see-it-on-mri.html. So bizarre for me not to be the patient this time around. Anyway ~ to make a long story short, absolutely adore the doc ~ very sincere ~ he ordered a full MRI ~ brain to spine for Sky. Her MRI is on 10/9 ~ pray that we get through it without sedation. I want the truth to be revealed. Clear answers so that we know what to do next. Of course we aren't planning on moving forward with any treatment for Sky until next summer at the earliest. I can't even go there right now ~ but knowing what I know about EDS ~ Chiari and Tethered Cord ~ I have to make sure that my children don't have to go through brain surgery, too.

Random ~ anyone out there watching the new show on FOX, The Fringe? So love it already ~ can't wait for Grey's Anatomy to start tomorrow ~ it's the little things that make me smile.

A Gathering of Traveling Brain Tails

2008-09-17T22:50:00.002-04:00

Just a quick note to let you know that I haven't fallen of the face of the earth, although, there have been moments when I thought that might actually happen! Seriously ~ having vertigo for 4 days straight can get old pretty fast. Think Jack Sparrow sauntering around ~ searching for more rum and wondering why all the rum is gone!

For the past year I have been in conversation with the local newspaper to try and get an article out about chiari to boost awareness. Finally, my contact there has printed a small story about the upcoming Conquer Chiari Walk Across America taking place in Albany, Washington Park at 10am this Saturday. You can read the article if you click on this link ~
http://timesunion.com/AspStories/story.asp?storyID=721409.

More later ~ I know ~ I am sooo behind on blogging ~ I will make up for it soon.

The World Is Changing

2008-09-10T15:55:00.006-04:00

I woke up this morning with a palpable feeling of sorrow. The heaviness has completely enveloped me ~ I feel as if I am wading through warm quicksand. 9/11/01 brought catastrophic loss to many families ~ their profound grief is felt around the world as we all remember those who lost their lives 7 years ago tomorrow. I pray that as time passes the grief is replaced with a renewed hope in those who were left behind. Love heals all.

Galadriel : The world is changed. I feel it in the water. I feel it in the earth. I smell it in the air. Much that once was is lost, for none now live who remember it.

http://www.stobiepiel.com/midis/world.wav