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.
For those of you who have been lurking here since this time last year you might remember the horrid school supply shopping experience I had. So this year I decided to do my shopping early to avoid the crazy rush. First plan of action was to not shop at 'sounds like Shmaples' this year. Also ~ I didn't place a time constraint on my shopping excursion ~ no racing off to pick kids up from camp ~ thus eliminating the panic factor.
All thinks considered my experience was quite as enjoyable as shopping for school supplies can be ~ true story. Although it took me longer than the average person would take ~ I took my time, compared prices. Making decisions is quite a daunting task for me ~ not only am I uber indecisive when it comes to picking out notebooks, folders, composition books ~ there are way too many choice for a Libra like me ~ not to mention my brain tail was going haywire. PINEAPPLE! PINEAPPLE! I made some disturbing observations while shopping. You see, the supply list doesn't exactly match up with what's available. For instance, 8 Colored Pencils ~ OK, easy enough, but wait, they only offer packages of 12 colored pencils. Did they just throw in 4 extras? What is going on here ~ and ~ the packages that say 'Teacher Recommended' are inflated in price ~ almost double! So ~ hey ~ I didn't fall for that gimmick :).
So ~ take this as a warning to you all who haven't ventured out into school supply buying bliss ~ BEWARE OF THE PENCIL SCAM! Seriously ~ they had pencils that have latex free erasers, earth friendly, smudge proof, scented, etc. OK ~ I get the latex free eraser option being available to the public ~ but seriously ~ what are these kids going to do with the erasers? Rub them all over their bodies? Eat them? My point is, these special pencils go for about $3.50 for 12 of them. Walk right past them ~ go down the aisle in the store where they have office supplies, gift wrapping stuff and u will find regular pencils ~ 12 for $0.99!
Ok ~ 'UNCLE' ~ I have had quite enough of the low pressure fronts that keep shrouding the Capital District Region~ enough already!!! Having a Chiari brain tail has turned me into a human barometer ~ TRUE STORY ~ seriously ~ Galileo would be proud.
If there was some way that us Chiarians could make a living out of telling weather forcasters that there's a low pressure front headed our way ~ maybe it would make the pain not so painful ~ right?! My head has been pounding for over a week now ~ hoping the weekend will bring some relief. I am far from even being able to grasp how this whooseedo over at the left works ~ but I do know that low atmospheric pressure = pressure build up in my noggin = headaches! *sigh*
"How the barometer works:
While not as accurate as modern day aneroid barometers, the principle of the early Water Barometer is sound. When atmospheric pressure decreases, the fluid is pulled upward toward the top of the barometer tube (low pressure). As atmospheric pressure increases, the fluid is "pushed down" (high pressure). Standard atmospheric pressure at sea level is 29.92".
I am soooo looking foward to some escapism tomorrow night with a TWO hour Grey's Anatomy finale ~ it's the little things that matter like good TV!
Last night, PBS aired Storm Over Everest which is a documentary put together by renowned climber/filmmaker Dave Breashears. Dave interviewed several survivors of the 1996 Everest tragedy (Guy Cotter, Lene Gammelgaard, Lou Kasischke, Sandy Hill, Michael Groom, Beck Weathers, Neil Beidleman). Ever since I read the book Into Thin Air I have been passionately obsessed with reading every book written about Everest ~ especially the stories of what happened that fateful night on the mountain where several climbers perished.
I admire and respect Breashears ~ he's a well seasoned climber and an excellent story teller. My heart has ached a long time for the stigma that has been placed on the climbers that were on the South side of Mount Everest in May of 1996. Assumptions were made ~ people were judged ~ based on a few accounts of what people thought happened on the mountain. Dave brings a fuller story to the surface ~ sheds light in some dark places. I was especially moved when the story gave the account of how Anatoli Boukreev went back by himself and rescued several people off the mountain.
As I watched the program I felt like I was sitting in my living room listening to stories being told with all of the familiar climbers. You see, after reading so many stories about these peoples lives, I feel in some way that they are kindred souls. They all possess within themselves a ferocious will to live ~ a love of life that kept them alive on Everest when they could have gone to sleep and died out there. If you click on this link http://www.pbs.org/wgbh/pages/frontline/everest/ you can watch the full 2-hour show on line.
Somehow, in hearing first hand accounts ~ hearing their voices ~ seeing the emotions on their faces ~ I feel a sense of relief. Through people sharing their life stories it gives new meaning to what it means to be alive after being stranded in the 'death zone'.
I just read Steve and Me by Terri Irwin. You can click on this link and read an excerpt. Reading about their love story and their life together was neat. Steve received all kinds of negative media and I believe that he was greatly misunderstood.
While I was reading about all the stories I could visually see them as I remembered episodes of the Crocodile Hunter. What an amazing, passionate man who did amazing things to educate people about wildlife preservation. When I got to the point in the book where Terri received news of his death I felt sad all over again like he had just passed away.
Now that Steve has passed along his family continues to be wildlife warriors. There is still so much going on at the Australia Zoo ~ Steve's exuberance lives on in those who loved him.
I have always had a deep respect and affinity for elephants. They are the gentle giants of the earth. I have read numerous stories about how incredibly smart creatures they are, but this is the first time I have seen a video of an elephant painting. What an amazing creature ~ just watch for yourself. Wouldn't it be neat to work with these incredible animals!
My brain tail has caused me to take things too literally lately. True story!!!
Just keep swimming, just keep swimming, just keep swimming, swimming, swimming. What do we do? We swim, swim, swim.
Since it has become pretty much impossible for me to run anymore without my legs going numb I have taken the plunge and fully embraced swimming again. I was on the swim team as a child up until I was in eighth grade. I occasionally won ribbons at swim meets, but I wasn't an all-star swimmer by any means. Honestly, I never felt completely committed or passionate about swimming, ever, but since I can't do much of anything else now I am finding a new found love in swimming.
I have about 24 days left of brain tail training ~ how, you ask, do you train a brain tail??? It's all about strengthening the mind, endurance, push past the point where you want to throw in the towel and quit. I know that recovery is not going to be easy, but will feel encouraged, hopeful and strong if I have tested my mind and know that I have the power to push through when the going gets tough. Swimming has proven to be the perfect training tool available to me right now.
I swam a mile last Friday and the hardest task wasn't having enough energy in the water, but rather keeping track of how many laps I had completed. Since brain surgery has brought to the surface a profound need to do a mini 'life review', I found a neat way to keep track of the laps. With each lap number, I would think about what I was doing at age 10, 11, 12...16, 17, 18...23, 24, 25... I was lost in a swirl of memories and wasn't really thinking about how long I was swimming and the time just flew by.
So, what's a girl to do while she is counting down the days until brain surgery ~ just keep swimming.
PS ~ Thanks Mom and Dad for encouraging me to stay on the swim team even though I cried all the way across the pool at my first swim meet when I was six. It would have been so easy to quit back then, but with your love and encouragement I learned how to keep going. Who knew that moment result in many years of swim team, life guarding and me teaching others how to swim!
An amazing medical story was on the Oprah Winfrey show last week. As a member of the Army Reserves, she was deployed to Iraq where she became the victim of a roadside bomb. Shrapnel from the bomb penetrated three lobes of her brain and she was given a 2% chance of surviving.
The neurosurgeon who saved her life removed a large portion of her skull and sewed it inside her abdomen for safe keeping. She was then shipped out the the United States where she spent several months in the hospital. Please take a moment to click on the link and read the story. This surgeon basically said that he 'goes to the mat' with all of his patients ~ his goal is to save every life that ends up in his operating room.
I was tagged this week by Billy Bob to list seven random things about me ~ so here I go ~
I have swum in a cow trough many times during my summer camp camper/counselor days ~ true story ~ It is surprisingly quite refreshing but incredibly slippery on the bottom of the trough due to many years of cow slobber build up!
I was an acolyte at church when I was in high school ~ one Sunday we were celebrating a big birthday of the church and I, along with a fellow acolyte, were asked to carry a ginormous sheet cake down the long aisle to the altar. We were laughing so hard the whole time that we almost dropped the cake on the floor.
A sorority sister of mine once convinced me that she could make a parrot costume for me for a Spanish Galleon mixer. She dressed me in a bright tie dye shirt and pants and then stuck cut out feathers all over me. Was I convincing as a parrot ~ you be the judge ~ someone at the mixer told me that I must be in the wrong place and that the 70's mixer was down the street!
I love to rappel down mountains, but the first time I tried rappelling it was at youth group at my church and we rappelled out the second story window. My foot went below the window ledge and I ended upside down. Then I was laughing so hard that I didn't have enough strength to pull myself back up.
I absolutely can't deal with Saran Wrap ~ hate the stuff ~ curse words come flying out of my mouth at the thought of Saran Wrap (@#%#$^%)!
My favorite Christmas movie is Christmas Vacation. "What's that squeeky noise?"
I see dead people and read minds.
OK ~ now I am supposed to tag other bloggers ~ but I have never been a fan of putting pressure on others to deliver ~ but my blog buddy Erica, my friend, you are tagged for random blogging! Hey ~ you ~ random blog lurkers ~ peering into my personal life ~ if you are going to hang out long enough to read about my life ~ leave me a random comment ~ please!
I saw this a while ago, Hug Someone Campaign. I was deeply moved by the effect it had on me ~ mostly because I am not a super huggy person by nature. From a very tender age, I've had personal space and intimacy issues. In the brain of a two year old, I learned very early on that when you hug on your big brother then they get killed by a horse. What kind of sense does that make now? It's completely ludicrous, I know, but survival skills are tough ~ they get emblazoned in our minds ~ our autopilot accepts them and they are very hard to purge!
So ~ after many hours of therapy, long talks with God and oceans of tears, I finally came to grips with the truth that hugging someone you love won't cause them to drop dead. TRUE STORY. OK ~ so I've given myself a reality check, but that still didn't make me instantly affectionate with others ~ it's a slow process. I've thought about this a lot lately mostly, because when I am in pain and struggling I push people away and pull back ~ I see the autopilot kicking in again. Survival ~ distance ~ set apart ~ detach ~ Most the time I feel that if I do let anyone in, allow them to comfort me or offer support, I just might melt into a puddle of tears.
OK ~ so why I can't I let myself fall apart from time to time??? I already feel like I have no control over myself anyway ~ the brain tail has totally taken over and I am grappling with trying to maintain some kind of control. I can hear you now, screaming at the computer
"you are a freaking delusional lunatic!!!"
I know I am ~ and I'm working on it already ~ My point is, we all need hugs for survival, SURVIVAL ~ So ~ here's my challenge 2 u ~ hug someone today ~ anyone ~ and I will do the same, because you know, we are ALL struggling in some area of our lives ~ either physically, emotionally, spiritually.
Make sure to watch this video below ~ it's awesome!
Beginning in 2007, most of the United States begins Daylight Saving Time at 2:00 a.m. on the second Sunday in March and reverts to standard time on the first Sunday in November. In the U.S., each time zone switches at a different time.
Actually, the reasoning behind the change is to save energy. True Story! This year we don't change our clocks back one hour until 2am on November 4th!
Between the now and the not yet ~ knowing and yet unsure ~ leaning forward and being held back by an indescribable force. Me, shaking my head (carefully, I might add as the brain tail doesn't like to be all shook up!)
How in the world did I get here again????
My head is spinning ~ true story ~ as I try to re-trace my steps ~ which doctor do I need to follow up with next? Did I already miss my deadline for my level 2 appeal? Is it time to step up to the plate and pay a visit to the Dept of Insurance? Feeling like I am losing touch with reality ~ so for my sanity ~ let me check the facts:
1. I have a Chiari Malformation herniated 11mm beyond where it should be
2. My insurance company won't allow out of network coverage
3. Chiari is a progressive condition and I am fearful of nerve damage while I wait for surgery
4. I officially have FIVE neurosurgeons ~ only one of them understands Chiari and the associated conditions completely and he's the one that I am not approved to see. He's the best of the best ~ the choice is clear ~ I just can't get there from here!
I have hit a huge roadblock ~ again ~ having trouble finding someone to do a test for Ehlers Danlos Syndrome ~ which, if proven ~ is the golden ticket to TCI. Today ~ I'm frustrated with the system ~ not feeling like I have any faith left ~ is there any clear way out of this???
Last weekend, both of my daughters competed in a cheerleading competition. In fact, my oldest daughter's team was awarded Grand Champions in their division and they are moving onto the next level ~ Regional Qualifiers in a couple of weeks. With all of drama of my brain tail going on, it has been a blessing and such a breath of fresh air to see the joy in my daughter's eyes as they are triumphing ~ winning!
In a world where there is a lot of bad things in the news, I frequently read the Wonderful News headlines. This one in particular ticked my funny bone and reminded me of my brain tail. Pepe Le Pew has stuck his head in a mayonnaise jar and can't get it out (this isn't the first time that containers have been deemed as not 'skunk friendly') ~ same story with my brain tail dawdling too long in my spinal cord.
Here is some random trivia that I have learned about this week ~ proof that even though my brain is falling out of my head, I am still learning stuff! Do you know which side of the car that your gas tank is on? Save yourself some embarrassment next time you borrow someones Jeep or drive a rental car. You see that little arrow next to the gas tank picture? That's which side your gas tank is on. True Story!
OK ~ I am a Native Texan ~ I know a lot about Texas history ~ but when it comes to NY ~ I am no so savvy. So ~ Columbus Day was on Monday ~ schools were closed, as was the Italian Bakery across the street from my office. Why, you ask? I'll tell ya ~ it was Columbus Day! If you are a Texan, you are probably shaking your head, WHAT? I don't get it! That was me ~ until my co-workers (sorry ~ I just couldn't resist sticking that awesome link in there ~ my co-workers are brilliant and we all have a really sick sense of humor ~ that image just makes me laugh!) got me up to speed on my NY history. Chris Columbus was Italian ~ of course ~ now I understand!
Who knew that a bear (click the link for the whole story) could sleep under a bridge? This not so little fella was scared by the oncoming cars on the bridge and fell ~ only to catch himself and crawl to the safety of the ledge underneath the bridge. After all was said and done, he was lowered down to safety in a net.
Sam the shoplifting seagull. This is a true story ~ you can read all about it on Snopes.com. I just love how Sam the seagull oozes with self confidence ~ he definitely knows what he wants and knows where to get it. He can work a crowd if need be. The customers enjoy his stealth shoplifting visits so much that they are actually paying for the chips that he steals!
I have a blog buddy who is taking a leap of faith ~ although paperwork and red tape are standing in her way of surgery ~ she's on her way to TCI ~ anyway. I admire her leap of faith ~ incredible strength ~ leaning in faith. I pray that she gets the treatment she needs and that all of the road blocks disappear.
I can't help but see Indiana Jones when I hear the term "Leap of Faith" ~ don't you agree?!?
So ~ there I was ~ soaking up the sun on the beach. The endless thundering motion of the ocean was helping me to untangle the thoughts in my head. The fact that I was officially on vacation was beginning to sink in ~ I've only got a week to relax so hurry up and start unwinding already!
One of my favorite things to do while spending time on a beach is to go for a long walk ~ ALONE. So, the first chance I got ~ I was off for a long, thought provoking walk down the beach. I walked down where there were no umbrellas, kids playing in the surf with boogie board, beach blankets and no people ~ just me, sand, waves and rocks. Now ~ spending my childhood summers on beaches off the Gulf of Mexico was a much different experience than this beach on Cape Cod ~ WAY DIFFERENT ~ but a good different. The main difference, besides the water temps ~ was that on Texas beaches, there are shells strewn all along the coastline. Cape Cod beaches on the Atlantic side have rocks ~ weird phenomenon ~ took me three years to get used to it ~ but the rocks are amazing.
I used to collect rocks from Texas rivers ~ I was attracted to their smooth, round shape. Knowing that the rocks endured years of weathering in the cold rivers was facinating. Where did the rocks start out? How far up stream? What did it look like when it fell into the water? The rocks on the Cape tell a simiar story. They have spent years tossing around in the ocean being battered and blasted by the waves and time. Their journey has been long.
Anyway ~ when I go on a thought provoking walk, my only objective is to let my mind relax and pick up objects that 'speak to me'. Don't worry ~ first I hear voices and now rocks are talking to me ~ holy heat! ~ I'm really losing her mind now!!! SERIOUSLY ~ you have got to know what I am rambling about ~ it's happened to you on a walk ~ right? If not ~ you have got to try it some time!
Rocks ~ speaking to me ~ back on track ~ my point ~ I do have one ~ let me get to it ~ On this one particular walk, I picked up several rocks that spoke to me ~ that's them at the top of the page. I call them my 'brain tail rock collection'. Just look at them ~ they look like my brain tail ~ every one of them! If you turn your head to the right, it even looks like my spinal cord ~ freaky ~ I know it's weird ~ just thought it was humorous that of all the rocks out there ~ these are the ones that I hand picked!
In my little corner of the world, I have been buried in medical bills. Between the plethora of doc appointments and a secondary insurance snafu (see link for acronym definition), I need to hire my own bookkeeper to keep everything straight! Every time I get another medical statement in the mail my stomach tightens, my heart beats faster and I get this deer in the headlights, panicky feeling. SERIOUSLY! Anyway, just wanted to share a small victory ~ make that two victories. I spoke with 2 doctor's offices today regarding outstanding invoice amounts and they both told me to "shred your invoice ~ throw it way ~ you don't have anything outstanding anymore!" ~ true story ~ SERIOUSLY!!!
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.
