Brain Injury

In light of a disturbing article I read today about a woman who complained of headaches for a very long time ~ she was constantly dismissed ~ then she passed away ~ I looked into the definition of a brain injury. I feel like I have been on the sidelines for a while now, neglecting my blog and my readers and I am trying to get back in the groove and post some helpful info out there on the web. Here's a good link for symptoms of a brain injury broken down by parts of the brain. This is the piece that really grabbed me:

Brain Stem: deep within the brain

•Decreased vital capacity in breathing, important for speech.
•Swallowing food and water (Dysphagia).
•Difficulty with organization/perception of the environment.
•Problems with balance and movement.
•Dizziness and nausea (Vertigo).
•Sleeping difficulties (Insomnia, sleep apnea).

Cerebellum: base of the skull

•Loss of ability to coordinate fine movements.
•Loss of ability to walk.
•Inability to reach out and grab objects.
•Tremors.
•Dizziness (Vertigo).
•Slurred Speech (Scanning Speech).
•Inability to make rapid movements.

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Seriously, I think it's safe to say that many of those still apply to me. I still have to remind myself daily that I have a serious brain malformation that caused irreversible damage/injury to my brain, and with high intercranial pressure and cranial settling, it continues to server up good doses of pain and destruction. Seems like the brain stem is really stressed out by the cranial settling ~ all I can do is wait for my bones to dense up ~ is that even really a word??? get more dense, that's better.

I am thrilled that Chiari is making the headlines more and more ~ the general public is getting an education on Chiari Malformations, but the stories are breaking my heart! Please, if you or someone you love is complaining of constant headaches, encourage them to find a doc who will give them so concrete answers.

NCB ~ Simply ~ The BEST

Our North Colonie Pee Wee Large cheer team competed at the Eastern Regional competition last weekend in Trenton, NY. Our cars were covered in shoe polish with NORTH COLONIE BISON. The top two teams go on to compete at the National level in Florida, Walt Disney World. Last year we missed going to Nationals by TWO points.

After the NY competitions were done we had three weeks to totally re-choreographed our routine to kick it up a notch so that we would have a shot at placing in the top two.. We threw in one legged stunts ~ liberties, arabesques and a heal stretch. Practices were long and tiring, but the girls rose above all the sicknesses that plagued our squad and made it work.

When it came time for us to take the floor and practice one last time before performing ~ confidence was shaken to the core for Hannah. The noise level in the arena was high ~ the girls couldn't even hear us shouting out the eight counts to walk through their routine. For whatever reason Hannah's stunt group didn't get her up and there wasn't a second chance to practice again. Our team was ushered off the practice mats and we got in line to perform. Emotions were running high ~ there was electricity in the air with anticipation of performing our 2:30 minute cheer/dance.

Us coaches were getting the girls pumped up ~ wishing them good luck and getting ready to say goodbye to them before their performance. I glanced over at Hannah and saw her tear streaked face ~ she was totally devastated ~ she was shaken and I had to find a way to get her past defeat and focused on the huge task at hand. She is a flyer this year and goes up in the air a couple of times during the routine. If her confidence didn't come back and quickly it would have spelled disaster for the routine.

I rushed over to embrace her ~ looked in her red eyes and told her she was going to nail her performance ~ shake off the feeling of inadequacy and make it work. I stepped away from her to let the other coaches swoop in to boost her up, too. She got the water works flowing for me and I had to turn away to hide my tears from the rest of the team. We said goodbye and took our places in the tunnel where the coaches wait until our team takes the floor. What a nerve wracking 30+ minutes we waited!

When our NC Bison took the floor we were ushered to the coaches box to watch them perform. We all held hands tightly ~ my heart was beating a million beats a second ~ I said another prayer ~ took a deep breath and waited for them to begin. When our girls spirited onto the floor I could see their smiles and their energy was bubbly ~ they had taken the floor to give it their all and they were happy! Their performance was flawless ~ not one bobble ~ all the stunts went up ~ what an answer to prayer. When they were done we all leaped to our feet ~ screaming ~ jumping up and down. Our girls had given it their all ~ and now we waited for the results.

Truthfully, I didn't even want to watch the other teams compete. We had done our best and our fate was in the hands of the judges. When all the teams took the floor for the awards ceremony I had high hopes that we would place,but had no idea if we had done well enough to go to Nationals. When they announced our team as the THIRD PLACE winners it was bittersweet ~ yeah we missed the coveted second and first place, but we had competed with a tough competition. There were tears of disappointment, but by the time we left the arena our girls filed out with smiles on their faces and heads held high.

Not until a couple of days later did we find out what the other team's scores were ~ that's when our third place win became even more bittersweet ~ we missed Disney by one third of a point!! That's 0.333333333 ~ Last year we came in FOURTH ~ this year THIRD ~ next year ~ DISNEY.

Step of Faith

I ready these daily devotionals ~ I look forward to reading them as I start my day. They always seem to speak right to my heart and whatever struggle I happen to be dealing with. The one today totally floored me ~ What a great affirmation as I step out in faith knowing that He will take care of the details. It's time to put the brain tail in it's place.

Cooperating with the Holy Spirit ~ by Rick Warren
Let the Spirit change your way of thinking. Ephesians 4:23 (CEV)
*** *** *** ***
Throughout the Bible we see an important truth illustrated over and over: the Holy Spirit releases his power the moment you take a step of faith. When Joshua was faced with an impassible barrier, the flood waters of the Jordan River receded only after the leaders stepped into the rushing current in obedience and faith. Obedience unlocks God’s power.

God waits for you to act first. Don’t wait to feel powerful or confident. Move ahead in your weakness, doing the right thing in spite of your fears and feelings. This is how you cooperate with the Holy Spirit, and it is how your character develops. The Bible compares spiritual growth to a seed, a building, and a child growing up. Each metaphor requires active participation: seeds must be planted and cultivated, buildings must be built – they don’t just appear – and children must eat and exercise to grow.

Paul explains in Ephesians 4:22-24 our three responsibilities in becoming like Christ.
First, we must choose to let go of old ways of acting. “Everything . . . connected with that old way of life has to go. It’s rotten through and through. Get rid of it!” (Ephesians 4:22 MSG).

Second, we must change the way we think. “Let the Spirit change your way of thinking” (Ephesians 4:23 CEV). The Bible says we are “transformed” by the renewing of our minds (Romans 12:2). The Greek word for transformed, metamorphosis (used in Romans 12:2 and 2 Corinthians 3:18), is used today to describe the amazing change a caterpillar goes through in becoming a butterfly. It is a beautiful picture of what happens to us spiritually when we allow God to direct our thoughts: we are changed from the inside out, we become more beautiful, and we are set free to soar to new heights.

Third, we must put on the character of Christ by developing new, godly habits. Your character is essentially the sum of your habits; it is how you habitually act. The Bible says, “Put on the new self, created to be like God in true righteousness and holiness” (Ephesians 4:24 NIV).
© 2008 Purpose Driven Life. All rights reserved.

All Things Work Together For Good

So ~ last night I got to sleep in my own house ~ albeit on the Futon and not my bed ~ still slept like a baby all night long! It feels great being home and almost a week post-op. John washed my super dirty hair last night ~ feel so much more human! Still can't take a real shower until Feb 13th. Getting my stitches out on Feb 11th.

The drive home was pretty uneventful and relatively quick. I was pretty drugged up with pain killers and muscle relaxants which made the ride bearable. I don't really know what to do with myself now. I don't do the whole rest and relaxation thing very well. I am exhausted tonight ~ missed my afternoon nap ~ hoping for an early bedtime.

I don't want to get my hopes up too much, but seriously, I haven't had any headaches since surgery ~ my neck and shoulders don't feel as tense ~ my neck looks longer ~ could I be cured just by one surgery??? I will give it a couple of weeks and hope to get off the pain meds before completely weighing in on how different I feel.

Focus on Jesus

I was really looking forward to hearing the sermon at church today. Our mission partner from Africa, Jeremiah Pallangyo, was going to preach. Every time I have heard him preach, God's words just flowed. Also, a couple of people at church had planned on praying for me after the service.

Jeremiah's sermon hit home with me ~ it was almost like his words were me specifically. He spoke about how when we focus on our problems in our lives we can be filled with impatience, depression and discouragement.

So, the response to this despair is to put our faith in God that He will help us to handle our problems. To have faith is to have hope in the things that are invisible. Trust in God. Put your mind into the word of the Lord! God will refresh you and give you refreshment in your heart. Jesus should be lifted higher than our problems.

I was reminded that, yes, I will have struggles and trials in my life. However, I will not be alone in the journey and it's very encouraging to glance back and reflect on all of the miracles and answered prayers in my life. I absolutely believe I have been trudging in the wilderness for a while with my Chiari journey. I was greatly encouraged by Jeremiah's sermon and was filled with a renewed sense of hope that would carry me as far as I needed to go.

After the service parishioners were invited to stay and pray for me. I was deeply humbled by the number of people who wanted to lift me up in prayer. I have had hands laid on me in prayer before, but this time was more meaningful, because my mom was there, too. Very specific prayers were lifted up ~ prayers to alleviate my physical symptoms ~ prayers to soften the hearts of the people reviewing my case ~ prayers for swift answers ~ prayers for my family and children ~ prayers for my faith and hope in the Lord.

During the prayers, an image started forming in my mind. I saw a gigantic boulder that was in the middle of the road. Suddenly, the big rock started to roll out of the way and I could see nothing but highway in front of me. The obstacle was removed ~ no explanation ~ it just moved as if someone had commanded it to move!

After the prayers were done I felt as if a huge weight had been lifted off my shoulders. I was no longer anxious about my appeals decision ~ in my heart I knew that no matter what, everything was in God's hands and in His timing.

I have attached a link for Jeremiah's sermon if you would like to hear his words of encouragement.
http://www.brunswickchurch.org/sermons/realaudio/upload/111107.mp3

Time That Is Given To You

Frodo: "I wish the ring had never come to me. I wish none of this had happened."
Gandalf: "So do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given to us. There are other forces at work in this world Frodo, besides the will of evil. Bilbo was meant to find the Ring. In which case, you were also meant to have it. And that is an encouraging thought." ~ LOTR

"The world is changed. I feel it in the water. I feel it in the earth. I smell it in the air." Galadriel ~ LOTR

Take out the word 'ring' and replace it with 'brain tail' ~ I wish I malformation was ~ I wish I wasn't burdened with filling out wills and signing health care didn't even know what a chiari malformation was! Wish I wasn't dealing with filling out my will and health proxy's ~ but it's my life ~ like it or not. Somehow ~ the quote above is encouraging ~ I was meant to have it ~ I have enough strength to bear the load ~ to be able to stand up underneath the weight of the burden.


In the same breath ~ I know in my heart that a time of healing is just on the horizon.