Always Looking Up

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

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

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

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????

Chiari Ripple

When I was a kid growing up in Texas, one of my most favorite things to do in the country was to try and skip rocks on a pond or lake. When I grew tired of rock skipping I would find the heaviest rock I could heft and I would hurl it into the pond with great anticipation of how big a splash it would make! Even though those splashes were spectacular I was always mesmorized by the ripples the rocks created ~ those perfectly formed circles seemed to go on for miles.

Now that I have the post-decompression perspective I am still in awe at how the chiari ripple continues to grow.

When I first learned about my invasive brain tail I felt so alone in my journey ~ how could anyone possibly understand what I am going through? After starting my blog I found with each passing day that I wasn't alone ~ there were others out there with chiari suffering along side me.

Our Hope Endures

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

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

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

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

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 ~