Who's Your Guardian?

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!

Skull Design & Root Causes of Neurodegenerative Diseases

(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

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

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

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

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

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 ~

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

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

Brain Stem: deep within the brain

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

Cerebellum: base of the skull

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

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

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