Monday, April 30, 2007

Too Open Minded???

I saw this sign and for obvious reasons, it caught my eye. Perhaps I am too open minded!

The latest update on the ole brain tail is that my second round of brain MRI's that I had done last week indicate that my brain hasn't herniated further. This news is a little unnerving, because although I don't appear to have a larger herniation, my symptoms have gotten worse over the past several months. In the Chiari world, it has been told that 'size does not matter' and I am beginning to understand that. Everyone is effected differently by Chiari ~ it's just a weird experience for me to have read all the possible symptoms that might effect me and to slowly recognize new symptoms lately to add to my list.

In case any of you watch Grey's Anatomy, they had a patient last week on the show that had a Chiari Malformation ~ although they didn't call it Chiari ~ that's definately what the patient had.

I do have some good news to share, this time tomorrow, I will be an aunt!

Wednesday, April 25, 2007


There is something very primal in my soul soul that is awakened with the sounds and smells of springtime. The air is filled with the scent of baby leaves growing on trees, tulips emerging out of the ground ~ everything is coming awake after a long winter slumber. Last night I heard the beautiful call of the peeper frogs singing in one strong voice. They are only between 2-3.7 cm in length, yet when they sing in chorus their song can be heard for miles. The new life cycle has begun, tadpoles have become frogs almost overnight ~ this gives me a renewed sense of hope to have new life 'peeping' all around me.

Sunday, April 22, 2007

Friday, April 20, 2007

Steps Along The Way

The latest news is that I had an appointment with yet another neuro-surgeon today for my insurance company motivated "second opinion". Is it just me or is it bizarre that I now have 2 neuro-surgeons? After my examination, he was profoundly surprised that I needed a second opinion to confirm that I have a sliding brain and I need to go to the experts.

I try to walk around in this body that God have given me and do the best with what he has given me. I cope ~ I adjust ~ I persevere ~ I push through hardships ~ it's what I do, AND I have gotten very good at all these things. However, the problem with these finely honed skills is that sometimes I can't see the trees for the forest.

During my examination at my second neuro-surgeon, he did a battery of balance and strength tests. I could tell, and so could John, that I have definitely declined over the past couple of months. I could barely walk toe to heal in a straight line.

So ~ next steps ~ the surgeon said that he would gladly write a letter recommending that I have my surgery done at the Chiari Institue. But wait, there's more, he also thought it would be a super idea to have another MRI of my brain and neck to see how much my adorable brain tail has grown since September 2006.

I am feeling a wave of relief that this is not just in my head, that I really have something going on inside that needs expert medical attention. At the same time I am letting the fear seep in at a trickle so that I can digest it and turn it into strength. My mind is already made up. Brain surgery is daunting. I can do this. One step at a time. Deep breaths.

Monday, April 16, 2007


SERIOUSLY! I am a big fan of Grey's Anatomy, they use the term, 'SERIOUSLY', way too much ~ but SERIOUSLY, SERIOUSLY! My McBrain is falling out of my McHead in a big, bad, ouch that hurts, hit by a 2x4, spinning out of control, can't walk in a straight line kind of way. The big bad insurance company told me today that before they approve my referral to go to the Chiari Institute to see the expert Chiari Brain Surgeons, they want me to get a second opinion. Are you kidding me???

Anyone seen Groundhog Day? I am beginning to feel like I am stuck in the same day over and over. How can I possibly explain myself and convince another doctor that I have a serious brain tail that has taken over residence in a place where there is no room for him. Hopefully I won't have to face another blank stare of disbelief that my brain tail is causing all my symptoms! SERIOUSLY!

Wednesday, April 11, 2007

Waiting With Great Anticipation

Soon, very soon, I will be able to claim the long awaited title of 'Aunt'. My little sister is almost a Mom. It seems like a decade ago since this picture was taken. My youngest and her older sister can hardly stand the suspense of waiting to find out what their baby cousin will look like.

Surprises are not that commonplace anymore, but choosing not to find out if you are having a boy or a girl and then waiting 9 (really 10) months for the answer is tough! I am tired of waiting ~ I want to know if I am going to have a niece or a nephew. We will all know the answer in a couple of short weeks. But then again, I wonder why I doubt myself and my intuitions on the matter.

One July (2006) morning, I was standing at the sink, doing dishes, and looking out the window. Suddenly, a vision flashed before my eyes, I saw myself standing at the same sink, but with a baby in my arms wrapped in a pink blanket. At the time, I dismissed the vision as 'random', but after I learned that my sister was pregnant and due in April, well ~ you do the math.

Tuesday, April 10, 2007

Serenity Now

I will have 2 MRI's done on Friday of this week. It's more like being stuffed into a toilet paper roll than anything. And don't forget the incredibly loud sounds that are blasted into your ears. I can do this, I've been down this road twice since September of 2006. When I am slid into the MRI tube, it feels like I am a million miles away from civilization. Visions of being buried alive can surface in a heartbeat ~ but I won't go there ~ can't go there ~ if I want to get out of there as quickly as possible. Serenity now comes to mind ~ I wonder what would happen if I yelled, 'Pineapple, pineapple'...

Thursday, April 5, 2007

The Truth Is Out There

I know ~ I'm a hopeless X-Files geek ~ I just couldn't resist the picture to go along with the expression. But seriously, this isn't about UFO's or little green men ~ this is about grabbing hold of the truth about my brain tail.

I finally have an appointment with the Chiari Institute in late May. This has been my goal, right? To have the specialists examine me and give me the final verdict on the possibility of having surgery ~ to upgrade the living arrangements for my brain tail from a bungalow to a two-story house. So why does it feel like things are accelerating way to fast for my comfort zone? The power of prayer still amazes me. I totally expected to have to wait until July for my appointment and all of the sudden, it's next month!

The truth is out there, I know it, but how will I react to the TRUTH? A part of me is fearful that they will look at my collection of MRI's, CT scans and X-Rays and say that there is nothing wrong with me. Another part of me fears the opposite ~ that I am on the verge of entering the permanent nerve damage zone and need surgery immediately. Deep breaths ~ heavy sighs ~ yes, my head continues to hurt ~ yes, I continue to feel like I am on a merry go round on a daily basis. I think what I fear the most are the possibilities. In my head, the truth, I already know.

Tuesday, April 3, 2007

Good Things Come To Those That Wait

Sometimes I feel like a baby turtle. I've got this shell to protect me, but I don't feel protected. All I know is that I have got to trudge my way to the sea ~ that's where I belong. I am so small and yet the ocean seems so powerful and daunting. I persevere, give it all I've got ~ the waves hit me with the force of a hurricane. Just when I think I am getting closer I am shoved back by a big wave. Thus is my journey to the Chiari Institute (CI).

I feel as if I have come a far way since finding out about my brain tail. I've gone through the motions of seeing specialists, endured 2 MRI's and have managed to keep my sanity. Today started out with a big feeling of defeat. I have left numerous messages for the CI and have gotten nothing but voice mail messages. Throw me a bone here ~ at least acknowledge that my voice has been heard! I am particularly dizzy today and have a head ache. My head is swimming and it's hard to keep a thought in my brain for more than a couple of seconds. I was wanting to curl up in a ball and hide from the world for a while until...

When I get to the end of my rope I try to give my current struggle up to God ~ after all, he's in charge. I have to remember that things don't always happen in my timing, but His. So after I did that, I checked my e-mail and there was an answer ~ definitely not one I was expecting ~ in fact, it's better than I could have imagined! Here's the exact message from the CI:
good things come to those who wait :>)))
I will be emailing you shortly with a cancellation that I have for the month of may.......P.S. right now we are booking for the month of July :>))
I will email you the details 2pm today........
sorry for the delay.