Thursday, September 25, 2008

Finding Clarity Through the Fog

I was driving into work this morning at 6am. It was still a little dark outside and the river road I drive on was shrouded in fog. What images/thoughts come to mind when you think of fog? Does it bring up feelings of fear or dread? For me, I feel energized and inspired by fog ~ I don’t know where the feelings come from ~ but hear me out.

As I was driving along, the imagery of a foggy road actually shed some light on a dark place in my heart. I think of life lessons in parables ~ when you can’t see the way, slow down, be on alert, follow the lines, and use your low beams. Even though putting on your high beams might seem like a good idea ~ yeah ~ more light means I can see better ~ wrong ~ the high beams make the light reflect right back in your eyes and then you can’t see at all.

*Sigh* ~ message heard loud and clear. I’m not going to know what’s just around the next corner and that’s just as it should be. Follow the lines on the road (the truth in scriptures) and enjoy the experience of traveling through a cloud! Just ignore the fact that the brain fog has totally taken over...

Wednesday, September 24, 2008

Ah ~ yeah ~ still in a place called VERTIGO

So, what's a girl to do when vertigo comes over for happy hour and decides to stay a while!? Any ideas ~ I welcome them all ~ SERIOUSLY ~ so over the vertigo. I would like to know when vertigo is planning on leaving ~ any time now is good for me! Make sure your stare at the picture above, at least long enough to feel what I have been feeling.

So ~ last weekend was the first ever conquer chiari walk across America. I haven't seen the total numbers of how much was raised on that day, but here in Albany, NY ~ we raised $6,000 just on the day of the event. That's not counting online donations. Thanks so much to all who donated! I was blown away by the number of people at the event ~ over 200 came out for the walk. Even though the walk was a brief lap around the park, the chance to get together with other brain tails was priceless. It was so awesome to finally meet one of my blog buddies ~ D. Hall ~ (that's D. in the middle and a new chiari friend, Nancy) please lift her up in your prayers as she is having surgery on 9/30/08.

My Brain Tail discovery day is coming up this Friday, September 26th ~ it's been almost 2 years since I was diagnosed with Chiari. The friends I have made on line through my blog and yahoo chiari groups have meant the world to me. It's like the Sisterhood of the Traveling Brain Tail. We instantly have a bond and even though Chiari manifests itself differently in each person ~ we understand what it feels like. The support has been encouraging and downright sustaining at time s when I just wanted to curl up and hide under a rock. I laugh and make fun of all my crazy symptoms, but deep down, I am so ready for my real life to begin. Why me ~ why now ~ like my Mom said today, "There has got to be a pony in there somewhere." My response was ~ "Make that a unicorn disguised as a zebra!"

Some of you have asked how I have been feeling ~ truthfully ~ it's been bad lately. Probably worse than I remember pre de-tethering. Between the increasing brain fog, vertigo and headaches, I am kicking myself for scheduling my surgery so far out. December seems months away. I am trying to take it day by day ~ try to look forward to something that will distract me from the harsh reality of brain surgery. Thank goodness for our DVR and all the season of show starting ~ escapism rocks!

Before I sign off ~ I do have a bit of good news ~ my youngest daughter, Skyler, had her consult appointment with a neurosurgeon yesterday. The hair rose up on my neck like a porcupine's quills when we entered the doctor's office. You see, this is the same practice where 'the godfather' practices. Here's the link if you don't remember ~ So bizarre for me not to be the patient this time around. Anyway ~ to make a long story short, absolutely adore the doc ~ very sincere ~ he ordered a full MRI ~ brain to spine for Sky. Her MRI is on 10/9 ~ pray that we get through it without sedation. I want the truth to be revealed. Clear answers so that we know what to do next. Of course we aren't planning on moving forward with any treatment for Sky until next summer at the earliest. I can't even go there right now ~ but knowing what I know about EDS ~ Chiari and Tethered Cord ~ I have to make sure that my children don't have to go through brain surgery, too.

Random ~ anyone out there watching the new show on FOX, The Fringe? So love it already ~ can't wait for Grey's Anatomy to start tomorrow ~ it's the little things that make me smile.

Wednesday, September 17, 2008

A Gathering of Traveling Brain Tails

Just a quick note to let you know that I haven't fallen of the face of the earth, although, there have been moments when I thought that might actually happen! Seriously ~ having vertigo for 4 days straight can get old pretty fast. Think Jack Sparrow sauntering around ~ searching for more rum and wondering why all the rum is gone!

For the past year I have been in conversation with the local newspaper to try and get an article out about chiari to boost awareness. Finally, my contact there has printed a small story about the upcoming Conquer Chiari Walk Across America taking place in Albany, Washington Park at 10am this Saturday. You can read the article if you click on this link ~

More later ~ I know ~ I am sooo behind on blogging ~ I will make up for it soon.

Wednesday, September 10, 2008

The World Is Changing

I woke up this morning with a palpable feeling of sorrow. The heaviness has completely enveloped me ~ I feel as if I am wading through warm quicksand. 9/11/01 brought catastrophic loss to many families ~ their profound grief is felt around the world as we all remember those who lost their lives 7 years ago tomorrow. I pray that as time passes the grief is replaced with a renewed hope in those who were left behind. Love heals all.
Galadriel: The world is changed. I feel it in the water. I feel it in the earth. I smell it in the air. Much that once was is lost, for none now live who remember it.

Monday, September 8, 2008

God is in sovereign control over the difficulties and the pain

I read this on a fellow blogger's post ~ I tried cutting sentences out that really spoke to me ~ but truthfully ~ the whole excerpt really spoke to me in a moment when I really needed encouragement to be thankful in all circumstances.

Jerry Bridges' message found as chapter 1 in the Stand book. Here's an excerpt...
...Lamentations 3:38 says to us, “Is it not from the mouth of the Most High that good and bad come?” That is, God is in sovereign control over the difficulties and the pain just as much as he is in control over what we would consider to be the good things, the blessings of this life. Now we should thank God for the good things of life. We are to be thankful people. But what about the bad things, the things that we would not choose to have in our lives? Paul tells us in 1 Thessalonians 5:18 to “give thanks in all circumstances,” and then he adds, “for this is the will of God in Christ Jesus for you.” That is to say, it is the moral will of God that we give thanks in all circumstances....
How do we do this? We do it by faith. We don’t just grit our teeth and say, “Lord, I don’t feel thankful, but you said to give thanks, so I’m going to give you thanks even though I don’t feel thankful.” That’s not giving thanks. We do it by faith. We do it by trusting in the promises of God. We do it by faith in the words of God through Paul in Romans 8:28–29, where he says “God causes all things to work together for good to those who love him.” And then he defines the good in verse 29 as being conformed to the likeness of the Lord Jesus Christ. This is what God is after.
He wants to conform us to the likeness of Christ; so he brings or allows these various circumstances, circumstances that we ourselves would not choose. He brings them into our lives because he wants to use those circumstances in his way to conform us more and more to the likeness of Christ. And so by faith we can say, “Lord, I do not know what particular purpose you have in this difficulty or this pain, this trial. But you said that you will use it to conform me more and more to Jesus Christ, and for that I give you thanks.” So we give thanks by faith. "
Stand: A Call for the Endurance of the Saints, chapter 1 "Four Essentials for Finishing Well" by Jerry Bridges, page 34.

Sunday, September 7, 2008

Conquer Chiari Walk Across America

This year on September 20th is the first ever Conquer Chiari Walk Across America. I am going to participate in the walk along with my family and other chiarians in the area. I am looking forward to meeting some friends and sharing stories with others on how chiari effects our lives. My hope is one day to find a cure ~ but until then we can raise chiari awareness and raise money to support research for a cure. The NY state governor has officially made September 2008 Chiari Awareness Month! If you are interested in joining us on 9/20/08 ~ just leave me a comment and I can send u the details

OK ~ I admit it ~ I totally hate asking for support, it's just my nature, but if you feel like sponsoring me, you can click on this link ~ to so so. The money is going towards a life changing cause! You know those neat "Stand Up 2 Cancer" ads that are out there right now ~ my dream is for people to stand up 2 Chiari. You mention cancer and immediately everyone knows ~ big deal, serious disease, right? Well most of the time when I mention Chiari people squinch up their noses and say, "What's chiari?"

WHAT? A series of coordinated Chiari walks held at the same time across the country.
WHERE? It is our goal to have at least one walk in each of the 50 states. Clock on this link listing all of the walk locations. Locally: Albany, NY
WHEN? Saturday, September 20th, 2008. September has been named Chiari Awareness Month in several 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; to raise money for vital research; and to get people involved.