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

The Power of the Butterfly

Since I am having a hard time walking without falling over walking on the treadmill has been out of the question. So in an attempt to hold onto the smallest ounce of sanity in my life I have started swimming again. We are members of a family health club that has an awesome heated indoor pool and it's been a pleasant surprise that my brain tail allows me to swim.

Ever since I was a little girl I have loved the water. I have come a long way from swimming for the Briargrove Barracudas at age six. When I was a teenager I lifeguarded and taught swim lessons. There is something incredibly satisfying about working with a child who is terrified of the water and to watch them fall in love with swimming!

For most people, swimming translates to putting on your bathing suit and bobbing up and down in the water. Not me, I can't get into a body of water without breaking out in a full fledged racing butterfly stroke ~ I just can't help myself! Muscle memory is a powerful thing ~ I don't know if I will ever completely understand it ~ but I love swimming the butterfly stroke and it's permanently emblazoned in my memory. It is probably the most complicated and physically demanding stroke to swim.

My shoulders have always been semi double jointed and swimming butterfly

feels so good to me. Probably thanks to Ehlers Danlos I have a greater range of motion. So ~ for now ~ I am happy that I can workout and feel strong and healthy if for at least a little while.

HUGS

I saw this a while ago, Hug Someone Campaign. I was deeply moved by the effect it had on me ~ mostly because I am not a super huggy person by nature. From a very tender age, I've had personal space and intimacy issues. In the brain of a two year old, I learned very early on that when you hug on your big brother then they get killed by a horse. What kind of sense does that make now? It's completely ludicrous, I know, but survival skills are tough ~ they get emblazoned in our minds ~ our autopilot accepts them and they are very hard to purge!

So ~ after many hours of therapy, long talks with God and oceans of tears, I finally came to grips with the truth that hugging someone you love won't cause them to drop dead. TRUE STORY. OK ~ so I've given myself a reality check, but that still didn't make me instantly affectionate with others ~ it's a slow process. I've thought about this a lot lately mostly, because when I am in pain and struggling I push people away and pull back ~ I see the autopilot kicking in again. Survival ~ distance ~ set apart ~ detach ~ Most the time I feel that if I do let anyone in, allow them to comfort me or offer support, I just might melt into a puddle of tears.

OK ~ so why I can't I let myself fall apart from time to time??? I already feel like I have no control over myself anyway ~ the brain tail has totally taken over and I am grappling with trying to maintain some kind of control. I can hear you now, screaming at the computer

"you are a freaking delusional lunatic!!!"

I know I am ~ and I'm working on it already ~ My point is, we all need hugs for survival, SURVIVAL ~ So ~ here's my challenge 2 u ~ hug someone today ~ anyone ~ and I will do the same, because you know, we are ALL struggling in some area of our lives ~ either physically, emotionally, spiritually.

Make sure to watch this video below ~ it's awesome!

Tree Roots

A tree with strong roots can withstand the most violent storm, but the tree can't grow roots just as the storm appears on the horizon.

~ Dali Lama

This quote was in the book that I am currently reading and it really resonated within my core. The process of growing strong roots has been a slow and sometimes painful process throughout my life. I believe that those of us who have tragic events in our life choose at that moment to stand firm and start growing roots or wither and die. "Hunker down" ~ that's Texas lingo for stand your ground and hold fast to whatever gives you strength.


Lately I have been drawing strength from my roots ~ they are keeping me anchored, grounded. They have found water in a land of draught ~ It's a good thing that I don't rely on good news from doctors and insurance companies for nourishment ~ I would have expired several months ago. Instead, I have kept myself alive by relying on scriptures ~ the undeniable truths that I am never alone in this journey. Despite the drought ~ this is where I belong ~ in this moment in my life! There has to be a greater purpose for these trials.

Jeremiah 17:8 He will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit."

Even Country Singers Get Chiari

I read the news report yesterday that Rosanne Cash was ending her tour early to have elective brain surgery. They didn't say why or what kind of surgery she was havingm, but my brain tail intuition told me that she had a brain tail, too. I can't imagine how difficult it must be to stand on stage night after night and sing with a brain tail in tow. Not to mention how hard it must be to stand upright without falling over. Best of luck to you, Rosanne for a successful surgery and a speedy recovery!

Dream It Anyway

God is great but sometimes life ain't good ~

I am reading a book (The Climb of My Life ~ Kelly Perkins) right now about a woman who had a heart transplant at age 35! She went from being a vibrant, athletic young woman to a patient waiting for a new heart in a blink of an eye. At some point in time while she was waiting for a new heart she looked at herself in the mirror ~ really looked at herself and when she did, she had to grab the bathroom counter to steady herself.

She hardly recognized the reflection in the mirror! The most shocking thing that she noticed was that her smile had been broken and she knew in that moment that she desperately wanted it back! Her lost smile and dreams helped fuel her forward to recovery.

Dreams are powerful and not to be taken lightly. I have to constantly remind myself of this as I wait for my new "head space".

Anyway ~ Martina McBride

You Can Spend Your Whole Life Buildin'
Somethin' From Nothin'
One Storm Can Come And Blow It All Away
Build It Anyway

You Can Chase A Dream
That Seems So Out Of Reach
And You Know It Might Not Ever Come Your Way
Dream It Anyway

[chorus]
God Id Great, But Sometimes Life Ain't Good
When I Pray It Doesn't Always Turn Out Like I Think It Should
But I Do It Anyway
I Do It Anyway

This Worlds Gone Crazy And It's Hard To Believe
That Tomorrow Will Be Better Than Today
Believe It Anyway
You Can Love Someone With All Your Heart
For All The Right Reasons
An In A Moment They Can Choose To Walk Away
Love 'em Anyway

It's In the Mail

Talk about getting a weight off my shoulders ~ I mailed my appeals package to my insurance company today. It's a good thing that someone isn't risking their life to deliver my package! When they sent me my denial letter back in September they included a sheet of paper where I could write my rebuttal and appeal the decision. I wish I could see their faces when they open the package of information I sent them. I crammed a folder full of information about Chiari, tethered cord, functional cranial settling, ehlers danlos ...

I have said a lot of prayers ~ it's out of my hands now. I prayed that whoever gets my case that they will be overwhelmed with compassion for me and my situation. That they will be moved to help me get to the Chiari Institute.

Daylight Savings ~ Fall Back

Beginning in 2007, most of the United States begins Daylight Saving Time at 2:00 a.m. on the second Sunday in March and reverts to standard time on the first Sunday in November. In the U.S., each time zone switches at a different time.

Actually, the reasoning behind the change is to save energy. True Story! This year we don't change our clocks back one hour until 2am on November 4th!

Mind's Eye

So, I get a call ~ at my house ~ today ~ and it's neurosurgeon #5. He finally received the MRI disc with pictures of my lumbar spine. Remember, he couldn't figure out how to open the files for that disc when I was in his office. This time he had the help of his PA to open the files.

He called to tell me that he had reviewed the pictures and he does not believe that I have tethered cord. Then he sums up the conversation by saying, and I quote,

"I don't know what they are smoking down there ~ but you definitely don't have a tethered cord!"

Now I don't know how you might feel, but I thought that was a pretty unprofessional statement to insinuate that the brilliant doctors at TCI sit around smoking dope and making up diagnosis for their patients. It still amazed me how little faith doctors have and I am thankful that I have a lot of faith in God and faith in doctors who are experts in the Chiari field. But, seriously, how rude!

The point is ~ no ~ I don't have tethered cord, never said I did ~ but TCI thinks I have an occult tethered cord ~ translation, you can't see it on films but it's there. They know this because of the large number of patients who have it.

This song says it all ~ can you see a breeze ~ it's presence is revealed by the leaves on the trees ~ an image of my faith in the unseen ~ comfort me in my hurricane ~

You Are A Pain In The Neck!

Dearest Brain Tail,

It has been lovely getting to know you so intimately over the past year. Your photo shoots have been stunning. The light from the MRI machines makes you look ten years younger. Even though you are family, twice removed on my mother's side and kissing cousin to the medulla oblongata family, I feel like it's time we had a heart to heart talk.

When you discovered the secret passage way through the foramen magnum and decided to move your stuff into my spinal column, what WERE you thinking? I know the space just oozed with spinal fluid goodness, but seriously, did you think I wasn't going to notice? When you bang on your drum set it gives me a pounding headache. Your frat parties are so wild that they make me stumble around like a drunk sailor who just got off the scrambler ride at the carnival! How exactly am I supposed to explain that to a police officer? Got any brilliant ideas Einstein??? I feel like I am losing my mind!

Quite frankly, you are a pain in the neck, true story! My buddy the spinal cord doesn't really enjoy your company. He's quite the introvert and needs his own personal space. When you irritate him, he sends electrical shocks up and down my arms to get my attention. He thinks he's being subtle, but believe me, I get his messages loud and clear. The whole roomie thing is not going to work out. I have been worried sick and have had insomnia over this whole situation.

Truth be known, I like you, you are kin, but you have got to move your carcass back into the skull ~ that's where you belong. It's only a matter of time before a surgeon comes in and evicts you. We can do this the easy way or the hard way, it's your choice. Either way, it's going to hurt like hell. It's possible you could get burned from this relationship and never be the same again. We will do our best to expand the space so you won't feel so crowded anymore. So, yeah, you are going to have to move out. I have dreams and plans and I am done dealing with your adolescent behavior ~ I am so over it! I am taking my life back!