Thursday, September 17, 2009

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 ~ ~ 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?


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.

Friday, September 11, 2009

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.

Thursday, September 10, 2009

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 ~