Conquer Chiari Walk ~ 2009

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

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

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

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

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

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

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

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!

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

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.