Steep Climb Up Ahead

I am all for mental preparation ~ If there's something I have committed to I want to know what to expect. My experiences in the past have gone well when I have faced a dark situation with this attitude,
Hope for the best, but expect the worse.
I know, it sounds a little pessimistic, even for me, but it's the truth. With that said, my sister gave me a book (Learning to Breathe, by Alison Wright) for my birthday that has been a great inspiration to me and I am only half way through the book. It's a story about a photojournalist who found herself in a almost fatal bus accident in a foreign country. I won't give away the whole plot, but she was a breath away from death and chose to live and fight through her injuries to live.

Last night I read a sentence that really resonated with me ~

"Even in the darkness all we can do is keep moving forward."

This reminds me that all I have to do is just keep putting one foot in front of the other and eventually I will find myself no longer in the inky darkness of pain. How's this for perfect imagery, yesterday was cold, windy, rainy, overcast, the sun never came out all day. A super dreary New England day. This morning I awoke to a brilliantly shining sun, crisp, cool air. Even after the darkest night the sun will rise in the East.

So, I am off to church this morning, then Skyler's b-day party followed by the Giant game ~ Hey, anyone out there following college football? How about my Texas Tech Red Raiders!!!

Epic Battles

It was bound to happen ~ the growing turmoil in my mind and body has given way to epic battles. (LOTR nerdling flag waving high!) Think Balrogs, trolls, fell beasts and Uruk-hai with no sight of Ents, Elves or Wizards to come to the rescue. Lots of warfare ~ internally ~ emotionally and physically ~ the time gap between now and surgery dates is getting smaller each second.

Before the appeal was overturned the enemy was the insurance company ~ something outside of myself ~ and now I am finding turmoil within myself. On a daily basis I am fighting back fear, doubt and more fear. I know that fear does not come from God:

For God did not give us a spirit of timidity (of cowardice, of craven and cringing and fawning fear), but [He has given us a spirit] of power and of love and of calm and well-balanced mind and discipline and self-control. 2 Timothy 1: 7

It is the Lord Who goes before you; He will [march] with you; He will not fail you or let you go or forsake you; [let there be no cowardice or flinching, but] fear not, neither become broken [in spirit--depressed, dismayed, and unnerved with alarm]. Deuteronomy 31: 8

I have been surprised by all of the spiritual warfare going on in my mind ~ casting doubt on the TRUTHS of the Bible ~ trying to take my focus away from the Lord. I am gently reminded to dig into the Word of God ~ put on the 'full armor of the Lord'. Although I do not understand why I must take this path of hardship ~ I know that all things work together for good for those who know and love God.

And we know that all things work together for good to them that love God, to them who are the called according to his purpose. Romans 8:28

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

Picketing and Protesting

One of my dear friends, E, blogged about me yesterday ~ Her ferocious attitude toward the bottom dwellers has given me strength to keep up the fight. She has supported me every step of the way ~ Should the need arise to take action ~ she will be there in a heartbeat! We started entertaining this dialog as our plan of attack unfolds:

Me: your blog was perfect ~ and just wait ~ I might just have you write a letter for me or better yet ~ we could protest and throw eggs outside of the scum-sucking-bottom-dweller's headquarters ~ we will wear sunglasses of course so no one will recognize me!

E: you'll be stumbling around like you are drunk, they'll have you arrested for public intoxication! yeah, sunglasses are going to hide you

Me: LOL! That's why you are there ~ my wing woman ~ I can't look drunk without a partner in crime!

E: silly ~LOL ~ tell you what, I'll get drunk so we can be the same

We will certainly look much cooler than the prohibition picketers of the early 1900's! But seriously, something has to happen just to get them to realize that this is an urgent matter. I have sent word to the local newspaper in hopes that someone will want to write about my story ~ I want to raise Chiari awareness so that others won't have to put up with the antics of jumping through fire hoops and walking on water just to get out-of-network surgery! Door to door to the Chiari Institute it's 171 miles from my house...to be continued...

Is it just me ~ or does anyone else hear in the background ~ "Why is all the rum gone? "