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 ~
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
3 comments:
Here's to hoping you dont' have to wait 2 months to get into a Rhematologist. Hold on...it will come - eventually.
Hope you dont' have to wait 2 months to get in to see a rheumatologist.
Honey, you are so strong and I continue to be floored by not only your strength but your strength in Him.
It would be so easy to have seen that appointment as having been "cup half empty" but you are right in that it is still at least half full.
In a way, this could be a blessing in disguise. Dr. #5 is in some ways trying to protect your best interests. And if he does debunk something, well, maybe that is a needless surgery avoided. And if otherwise, well, we'll cross that bridge later if necessary.
Meanwhile, I'm here with you. For you. Lean on me. We will continue to press on until we reach Mount Doom and when that time comes I will watch in awe as this burden you have carried is cast away.
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