Tuesday, January 29, 2008

Eye of the Tiger

Time to put on my game face ~ take a deep breath ~ one foot in front of the other. There's nothing like an unexpected obstacle right here at the home stretch. I am fighting a cold ~ not willing to let it take me down and delay my surgery. Taking Vitamin C by the handful ~ tomorrow is another day ~ I am convinced I will feel like a healthy person when the sun comes up.

Headed south tomorrow morning ~ taking a day to relax and prepare for pre-op stuff ~ Prayers are already being answered ~ we got word this morning that we got into the Variety House ~ one less thing to worry about. Hard to believe that I am officially on medical leave now. Check back in for updates on Friday. Worshiping Him in the waiting ~ Operation Covertly Invisible Tethered Cord commencing in 2 days ~

Monday, January 28, 2008

LOST Summed up in 8 Minutes

LOST returns on Thursday, January 31st with a two hour premiere ~ It has been a long 8 months since we spent some time with our favorite cast aways. I am looking forward to diving right back into the mystery of the island with high hopes of maybe having some answers to the running list of questions that LOST procures. If you haven't seen this eight minute recap yet it will definitely remind you of all of the plots in the show.

It maybe just be my love for the Hobbit folk ~ but I will miss Charlie! Yes ~ he was annoying at times, but I will still miss him. I am hoping that since the season premiere is on the day before my surgery I will have plenty to mull over in my pain killer infused mind ~ maybe I will come up with some new theories about the show. Stay tuned for more on that later ~

Let's Call This One A Speed Bump

Call me crazy ~ but I really don't see what the big deal is! This first surgery is just like a kinda big speed bump compared to the big bad brain surgery. A "warm up" to the big dance ~

This weekend was filled with time spent with friends. Walks ~ meals ~ movies ~ prayers ~ and lots of phone calls. I am profoundly amazed at the outpouring over Lil ole me ~ Seriously ~ thanks to all of you who have reached out to me ~ feels good to be facing surgery knowing that there are a lot of prayers being lifted up for me.

My last day at work is tomorrow before my extended leave for the Chiari Spa! Feels so weird tying up loose ends ~ passing the baton. I am so blessed to work with some amazing people ~ they were there when the now infamous phone call came in ~ breaking the news to me that I had something in my brain called a Chiari Malformation. They have seen me at my worst and yet they can still joke around with me about blaming everything on the brain tail. Seriously ~ I love all of you guys (and girl) ~ your support has meant the world to me and has really eased this journey for me. Even though I'll be out of the office I will be lurking on-line ~ I expect a good flow of IM's from the 'green room' team ~ or I will threaten to send you guys left over brain tail bits and pieces ~ TRUE STORY!

Gotta finish up packing tonight ~ how do I pack for a stay at the hospital ~ kinda silly if you ask me. I am sure I will be wearing the uber luxurious hospital gowns the entire time I am there!

Thursday, January 24, 2008

Instant Screen Cleaning

Need your computer screen cleaned???? Sure you do! You won't be disappointed ~

Random Trivia and Stuff

Nominees for the 2008 Oscars were announced this week. I admit it, I am a nerdling for movies ~ if I had more free time I would go to the movies at least twice a week. My Netflix list has about 62 movies in cue and about 40 more that haven't even been released on DVD yet. So ~ clearly ~ there are not enough hours in the day to whittle away at my ever growing list of flicks that I must see.

So ~ back to the Oscar nominations ~ I enjoy seeing as many of the nominated films as I can so that I can make educated guesses as to who will actually win the coveted gold statues. This year I have watched many of the films that have nods in one or several categories: Atonement, Juno, Enchanted, Into the Wild, Elizabeth: The Golden Age, Ratatouille, Surf's Up. I will add another to my list by seeing There Will Be Blood tomorrow night. A couple more are on my Netflix list of must sees ~ Michael Clayton, Sweeney Todd, Charlie Wilson's War, The Savages, Gone Baby Gone, I'm Not There, The Golden Compass, The Assassination of Jesse James.

Judging from past award winning Oscar films (see below), the Academy frequently pics violent movies. True Story ~ just look at the list from 1970 til now (I have seen the ones in blue)~ Every now and then there will be a heartfelt film winner like: Terms of Endearment, Forrest Gump, Chariots of Fire, Out of Africa ~ but most are filled with some sort of brutal violence ~ blood shed. I'm telling you right now ~ I won't see No Country for Old Men ~ but am afraid the it's going to make a clean sweep on Oscar night. One of my blog buddies expressed her review of the movie in her blog ~ I would rather see Juno win ~ the movie made me laugh all the way through it and yet the issues dealt with in the plot were pretty serious.

LOVED Enchanted ~ with the combination of classic Disney animation coupled with a fresh look at a fairy tale princess ~ I was smitten ~ so surprised that the chipmunk didn't get an Oscar nod for best Actor!

2007 ~The Departed 2006 ~ Crash
2005 ~ Million Dollar Baby
2004 ~Lord of the Rings: The Return of the King
2003~ Chicago
2002~A Beautiful Mind
1999~Shakespeare in Love
1997~The English Patient
1995~Forrest Gump
1994~Schindler's List
1992~The Silence of the Lambs
1991~Dances With Wolves
1990~ Driving Miss Daisy
1989~Rain Man
1988~The Last Emperor
1986~Out of Africa
1984~Terms of Endearment
1982~Chariots of Fire
1981~Ordinary People
1980~Kramer vs. Kramer
1979~The Deer Hunter
1978~Annie Hall
1976~One Flew Over the Cuckoo's Nest
1975~The Godfather, Part II
1974~The Sting
1973~The Godfather
1972~The French Connection
1970~Midnight Cowboy

Wednesday, January 23, 2008

B.C. ~ Before Chiari ~

Yesterday I was reading a blog update from another Chiarian and they referred to their life before chiari as "B.C." ~ so I guess that makes my life after decompression as "A.D"! Because truth be known, I was born with my brain tail ~ it's been there all along it just took me almost 36 years to discover the troublemaker.

I was trying to remember the most recent time I felt at peace with myself ~ when I was sure that my smile was not lost in the depths of my soul. Cape Cod ~ Summer of 2005 ~ It was our first of many annual summer vacations ~ I was overwhelmed with the beauty of the ocean on the East Coast. I distinctly remember the next year when we returned ~ I had a headache that was present the whole time we were there ~ something was just not right ~ I would discover my Chiari only a month later.

I know in my heart that "A.D." I will be back on the road to finding my smile again ~ finding peace and wholeness within myself ~ strength ~ renewed hope ~ a zest for life. You see ~ right now I am just holding on ~ taking one step at a time ~ or the enormity of what is just around the corner will consume me.

Sunday, January 20, 2008

More Ducks in a Row

Things seem to be coming together and I checked some items off my 'To Do Before Surgery' list this weekend.
Get all short term disability paperwork in ~ check

Throw second successful slumber party ~ check

Watch the greatly anticipated movie, Cloverfield, ~ check (BTW ~ I don't recommend Cloverfield for anyone who has Chiari ~ I knew going into the movie that it was going to make me really dizzy and the possibility or barfing halfway the movie was imminent ~ but I closed my eyes a bunch and looked away from the screen and managed to make it through to the end. Thanks to DC and SC for providing the essential Jujyfruits that kept the nausea at bay!)

Watch the NY Giants secure a spot in the SUPER BOWL ~ check!!! Who wants to watch the Super Bowl from the comfort of a hospital bed?? Me ME me!! This will definately be a super bowl I will never forget.

Thursday, January 17, 2008

Clear Path

One of the great wonders of life is that things are never as they appear ~ always in motion ~ constantly morphing into something else. The oceans are the greatest example of the never ceasing thundering motion of the waves. I have drawn great strength and comfort from a handful of songs over the past year and a half. They have been there on the radio like a loyal friend, just when I needed them ~ audibly expressing what I am feeling. Through their steadfast consistency ~ the meaning of the songs have new meaning to me. "I will go through the valley if you want me to..." Maybe it's me that is maturing in my faith ~ in my understanding of WHY I am here on this path ~ this bumpy, dark, twisted and beautiful path through the valley ~ me and my Chiari brain tail.

Ever since I was a little girl ~ that awful day that shook me to the core ~ watching my brother get kicked in the head by a horse ~ watching his spirit leave his body ~ I knew then and there that life was precious and easily taken away. In the same breath, I knew that there was no way I could carry on without drawing strength from Jesus. I also knew that God had big plans for me ~ that He wasn't through with me yet. Throughout life ~ again and again ~ I have been through many hard times ~ struggles; however, there have been a lot of wonderful and happy moments, too! All my life I have wanted to go to Africa and do mission work ~ hopefully some day I will make it there ~ but for now ~ I am here ~ on this path.

As my surgery dates have drawn closer I have had some amazing re-connections with old friends and have made some new ones. If it weren't for my brain tail I would have never met such amazing people who have been blessed with a brain too big for their head. There is no doubt in my mind that God has been present through all of this journey thus far and will continue to walk with me. For those of you who have reached out to me, know that you are all near and dear to my heart ~ kindred souls ~ we will get through this ~ and my wish for you is that you will feel an overwhelming spiritual presence through this journey ~ a peace that passes all understanding ~ a feeling in your heart that you are not alone in this journey!

If You Want Me To ~ Ginny Owens

The pathway is broken
And the signs are unclear
And I don’t know the reason why you brought me here
But just because You love me the way that You do
I will go through the valley If You want me to

CHORUS: Now I'm not who I was When I took my first step
And I'm clinging to the promise You're not through with me yet
So if all of these trials bring me closer to You
I will go through the fire
If You want me to

It may not be the way I would have chosen
When you lead me through a world that's not my own
But You never said it would be easy
You only said I'll never go alone
So when the whole world turns against me
And I'm all by myself And I can't hear
You answer my cries for help
I'll remember the suffering Your love put You through
And I will go through the valley
If You want me to

Tuesday, January 15, 2008

Deep Inside This Armor ~ The Warrior Is A Child

The last couple of days have been really rough on me ~ nausea /vertigo/ headaches / trouble breathing / insomnia ~ good to be able to see the first surgery on the very near horizon. I got FOUR letters from my insurance company today. My heart instantly started to race as I was filled with anxiety ~ will they pull the rug out from under me just when I thought I was actually going to have my surgeries done?

My fears were instantly quelled as I read them one by one ~ approved, 3D CT Scan, approved inpatient surgery 2/1/08, approved outpatient procedure 3/6/08, approved inpatient surgery on 3/7/08 ~ all signed by the same medical director. If I could, I would drive over there right now and give Mr. Medical Director a huge hug!!!

So ~ getting my ducks in a row ~ results from the echo cardiogram were normal. Taking it day by day ~ drawing strength from my faith ~ daily fighting battles against the doubt and fear in my head.

The Warrior is a Child by Twila Paris

Lately I've been winning battles left and right
But even winners can get wounded in the fight
People say that I'm amazing, strong beyond my years
But they don't see inside of me, I'm hiding all the tears

They don't know that I go running home when I fall down
They don't know who picks me up when no one is around
I drop my sword and cry for just a while
Deep inside this armor - the warrior is a child.

Unafraid because His armor is the best
But even soldiers need a quiet place to rest.
People say that I'm amazing - never face retreat
But they don't see the enemies that lay me at His feet.

They don't know that I go running home when I fall down
They don't know who picks me up when no one is around
I drop my sword and look up for a smile
'Cause deep inside this armor

Deep inside this armor
Deep inside this armor
The warrior is a child.

Sunday, January 13, 2008


A few months ago I had the pleasure of meeting a fellow chiarian for breakfast. We had exchanged e-mails ~ shared our chiari journeys ~ actually meeting her face to face was like being reunited with an old friend. Even though she has already had her surgeries and is way ahead of me in her chiari journey, we share a kinship ~ bonded by the brain tail.

One of the things that she said to me that has stayed with me is the fact that in the months prior to her surgery ~ she can't remember anything in that time period. I am finding the same is true for me. I seem to be on auto pilot ~ plodding through each day ~ and yet time seems to be flying by at warp speeds at the same time!

I am trying to stay focused on the present so that I am here in the now and not in the past or the future. Searching for that inescapable peace and serenity that comes from knowing that everything is going to turn out fine ~ fighting the urge to grab my passport and get the heck out of dodge! But truth be known, the brain tail goes wherever I go ~ serenity now!

Thursday, January 10, 2008

Turn On Your Heart Light

I had my pre-surgical echocardiogram echocardiogram today to make sure that my heart can withstand the stress of two surgeries back to back. Today was not the best day for my heart to show up for an exam. Periodically I will have a day where it's hard to breathe ~ imagine breathing out of a straw. I will have chest pains, short, shallow breaths ~ these are the side effects from brain stem compression. I can't predict when I will have these symptoms, they just show up randomly.

So imagine my delight when I started experiencing these symptoms today ~ knowing that my heart was going to be scrutinized. The ultra sound tech could tell that I was struggling to breathe ~ I just hope that the echocardiogram is a 'pass-fail' test. Turn on your heart light ~

Monday, January 7, 2008

Taking Things A Little Too Literal

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!

Thursday, January 3, 2008

What Does Spinal Surgery Have to do with Chiari?

When I tell people that I am having spinal surgery prior to the brain tail surgery I often get blank stares and perplexed looks in return. What does the spine have to do with the brain?? Well ~ everything ~ they are connected. I thought I would take a moment to try and explain the reasoning behind the surgery to release my spinal cord.

Studies have proven that Chiari can be acquired due to a fatty filum terminale (thread like structure that connects the lower end of the spinal cord to the bony spinal column).

"A filum which is unusually thick or fatty may lose its natural elasticity and pull down on the spinal cord, effectively placing it in traction. When this force is enough to pull the end of the spinal cord below the L2 vertebra it is considered to be tethered cord. This type of downward traction can cause symptoms such as bladder and bowel dysfunction and leg pain and weakness. A tight filum is treated by cutting it and releasing the tension."
So basically, TCI believes that my brain tail is being pulled downward into my spine due to a tight filum terminale. The good news is that the only side effects I have from this right now are weakness and pain in my legs. By having the surgery now I will avoid permanent neurological damage if left untreated.

The procedure to release the thickened filum involves a laminectomy at one or two levels in the lumbar or sacral spine to expose the site of the tether, and a division of the tight filum is made. The filum has no neurological function. After the surgery I will have to lay flat on my back for 24 hours to prevent a CSF leak.

If you want more info there are some links on the sidebar on my blog ~ TCI has made the ground breaking discovery that ties Chiari to Tethered Cord ~ truely amazing stuff. You can also click here for an explanation of the TC surgery.

Wednesday, January 2, 2008

Sam I am

My First Grader has recently been reading like crazy ~ she reads everything ~ making sense out of letters has opened up a whole new world to her! Just the other day, she surprised my husband by gleefully reading 'Green Eggs and Ham' all by herself! Anyone who has ventured into the nutty world of Dr. Seuss knows that mastering his books is a huge accomplishment for the emergent reader.

So last night, as bedtime rituals came to story time, I requested that she read Green Eggs and Ham to me. Let me preface this with the fact that yesterday was New Years Day ~ the day after staying up super late ~ we were all tired ~ and you as well as I know that when we are tired our brains just don't work very well. Anyway, she started to enthusiastically read the first page of the story...

That Sam I Am, that Sam I Am, I do not like that Sam I Am.
Just two seconds later my darling daughter was shedding tears of frustration ~ and me and my brain tail were empathetic. She was all upset ~ she didn't understand why the guy who was talking did not like himself!!! I'll admit ~ the book is confusing ~ the story is about the guy on the cover ~ the very first page of the book has Sam I Am holding a sign 'Sam I Am' and that's your only introduction to the annoying character.

So ~ when the tears died down a wee bit I tried to explain who 'Sam I Am' was and that he was different from the main character. But ~ SERIOUSLY ~ what is the name of the main character?? Does anyone know? I will try, again, tonight to explain the story ~ and hopefully this time sans tears. If a long explanation is needed I just don't know if my brain tail can explain it!