Tacking

The shortest distance between two points is a straight line ~ but that's not always the path I've chosen. Tonight I've been reflecting and looking back at the path I've blazed over the past two years that's brought me to the here and now. I glance back ~ and OMG ~ what a zig zaggy path from hell I've taken. To the untrained eye it might look like complete random chaos. More like the path a rabid squirrel on crack would take ~ but I digress.

I love the water and there's no better way to spend time on the water than on a sailboat. Since learning how to sail a Sunfish at Camp Longhorn  (Heaven on Earth) ~ the art of tacking has always made me ponder. The task of going back and forth across the lake so that you catch the wind at just the right angle is fun and challenging. Sailing takes time, you are at the mercy of the wind and your tacking skills. Spending a day on the lake is a journey not a sprint.

Stay with me, I'm getting to my point...

I guess what I am trying to say is that all the detours and the seemingly unnecessary pit stops along the way in the my life are making sense now. Of course I had to zig-zag my way through the rough waters. There was no other way.

Each destination had a profound purpose, even if I couldn't see it or understand why at the time. Now the picture is becoming more clear and I can see how the parts fit together to make me more complete.

My words of encouragement to you are to hang in there when you feel frustration with how slow your journey is going. There's a whole lot of LIFE between knowing where you want to go and the journey that takes you there.

It All Comes Down to DNA

Distant ~ quiet ~ mulling things over ~ Sometimes I just need some time and space to think. The deadline for my second level appeal is coming up in a couple of weeks ~ I need to be prepared to present my case. The first time I appealed my request for out-of-network surgery, the door was slammed in my face. Thinking back ~ I am sure that the powers that be looked at my file ~ saw my request and quickly denied me. Their thoughts were ~ she needs a garden variety decompression and we have someone in-network who can do that for her. On the contrary, my case is not even in the same galaxy as the garden variety surgery! So now ~ I am digging deep within myself so that the information I present is convincing enough to get the green light to TCI.


I still remember a college professor's comments on one of my final history exams. He was completely blown away by my essays on the final and he was convinced that I was an English major. (In reality, I was probably using grandiose words to try to cover up the fact that I wasn't completely prepared for the exam!) Seriously, the man was moved to tears by my essay ~ we are talking about history here ~ not a romance novel. Anyway ~ my point is, apparently my writing can have that effect on people every now and then. So, I will attempt to 'move' the powers that be ~ to help them walk a mile in my shoes ~ to show them my point of view.


The outcome will be up to them, but I am clearly praying for nothing short of a MIRACLE! I am looking for the express train ~ the fast track to TCI. Meanwhile ~ I am in the process of getting an appointment with a geneticist so that I will have concrete, medical proof that I have Ehlers Danlos. Nothing in this process has been speedy. With that in mind, if I actually secure an appointment with this geneticist I will be lucky if I get an appointment any time soon. You see, they are scheduling appointments FOUR months out right now ~ you do the math ~ we are talking MARCH of 2008. So ~ all along, everything has been leading up to focus on the building blocks of life ~ DNA. I may find out more about myself from a geneticist that I ever wanted to know.

Where Am I?

Between the now and the not yet ~ knowing and yet unsure ~ leaning forward and being held back by an indescribable force. Me, shaking my head (carefully, I might add as the brain tail doesn't like to be all shook up!)

How in the world did I get here again????

My head is spinning ~ true story ~ as I try to re-trace my steps ~ which doctor do I need to follow up with next? Did I already miss my deadline for my level 2 appeal? Is it time to step up to the plate and pay a visit to the Dept of Insurance? Feeling like I am losing touch with reality ~ so for my sanity ~ let me check the facts:

1. I have a Chiari Malformation herniated 11mm beyond where it should be

2. My insurance company won't allow out of network coverage

3. Chiari is a progressive condition and I am fearful of nerve damage while I wait for surgery

4. I officially have FIVE neurosurgeons ~ only one of them understands Chiari and the associated conditions completely and he's the one that I am not approved to see. He's the best of the best ~ the choice is clear ~ I just can't get there from here!

I have hit a huge roadblock ~ again ~ having trouble finding someone to do a test for Ehlers Danlos Syndrome ~ which, if proven ~ is the golden ticket to TCI. Today ~ I'm frustrated with the system ~ not feeling like I have any faith left ~ is there any clear way out of this???

One Step Closer

I don't even know where to begin ~ The picture above says it all ~ My visit with surgeon #5 didn't go as I planned in my mind ~ but then again ~ who am I trying to kid ~ this is me we are talking about. If the shortest distance between two lines is a straight line ~ my route has been the polar opposite of short and straight!

I don't want to bore you with all the details ~ so I will try to sum up what happened yesterday. With my mom and husband in tow ~ after waiting for over an hour past my appointment time ~ I met surgeon #5. Mine was the last appointment before his lunch break ~ he looked tired and weary. I tried to sum up what has been going on with me since my Chiari discovery ~ he was tough ~ I stood my ground ~ basically he agreed that I have a significant Chiari malformation and I would definitely benefit from surgery ~ however ~ the other diagnosis that TCI gave me ~ he wants to debunk all of them.

As he was talking and it was clear that we weren't on the same page ~ he even lauded surgeon #4 (the Godfather)! I felt a sinking feeling in the pit of my stomach. I fought the waves of emotion coming over me ~ I felt as if I was stuck in a revolving door ~ going around and around with no exit in sight! Then ~ I heard a small, still voice voice within myself ~

"This is all as it is supposed to be ~ stay strong ~ hold your ground ~ I will carry you."

So ~ is summation ~ the next step is to get medical ~ concrete evidence that I do in fact have ehlers danlos. I am trying to schedule an appointment with a rheumatologist ~ apparently they should be able to do some kind of skin test confirming EDS. I am 99.9% certain that I do have EDS ~ I have all the signs. If there is a silver lining in here somewhere ~ when I test positive for EDS ~ then surgeon #5 will write a letter recommending that I absolutely go to TCI for surgery ~ they are best equipped to deal with stability issues. This all takes me one step closer ~

One Step Closer ~ U2

I'm 'round the corner from anything that's real
I'm across the road from hope
I'm under the bridge in a rip tide
That's taken everything I call my own

One step closer to knowing
One step closer to knowing

I'm on an island in a busy intersection
I can't go forward now I can't turn back
Can't see the future
It's getting away from me
I just watch the tail lights glowing

One step closer to knowing
One step closer to knowing
One step closer to knowing
Knowing, knowing

I'm hanging out to dry
With my old clothes
Finger still red with the prick of an old rose
Well the heart that hurts
Is a heart that beats
Can you hear the drummer slowing?

One step closer to knowing
One step closer to knowing
One step closer to knowing
To knowing

One step closer to knowing
One step closer to knowing
One step closer to knowing
To knowing, to knowing