Thursday, November 15, 2012

It Is All A Little Too Strange

This is one of those blogs that isn't already written in my head. Usually I have a fairly clear 'thesis' statement and major plot points: some where I want to take my readers or some thing I want to say. It is more that my life feels like it is caught in some sticky web of cotton candy that has a slightly unpleasant odor. My body has had a major trauma and I can't quite seem to incorporate that into my reality. I am not sure what normal is anymore.
Everyone asks me how I am doing. That is the big  central crux issue. Well, I've learned, rather successfully I might add, how to have 1000ccs of water flushed through a Caecostomy tube into my colon so that my bowel is flushed out every day. The plastic bag that hangs on my side to collect urine I try my best to ignore. At its very center is what looks like a melon-ball scoop of steak tar-tare that constantly seeps urine. It is more than odd that I never stop peeing. And the long strip of staples that reaches up like a fiddle head fern around my belly button seems like a great dividing wall from the old left side of my fat normal belly to the appliance laden, ooey gooey, frankly rather repulsive right side.

Not for the faint of heart....8" incision

My body feels foreign and out of my control now. Caregivers, family, doctors and just about everyone has an opinion. And whether from deep depression, or really overwhelming surgical pain, or grinding neuropathic pain I just can't make any more decisions. I don't want to answer my phone, or deal with one more giant to be slayed. I am worn to a brittle thin edge.
And yet, I have to go forward. So I do.
I am encircled by amazing family and friends who do so much. My faith is so real to me that in middle of the night I can feel Him all around me when I cry. Life is still rich. Life is still worth living. So I will, So I do.

3 comments:

Kim @ Stuff could... said...

Your description of how your body is now...helps me to realize that I am not alone in this medical maze...I am so thankful we have Him to help us

Judy at Peace Be With You said...

((Janine))

Have Myelin? said...

...and you make me feel bad for complaining about DME's.

I don't know what happened obviously (I'm behind) but I'm sorry.

I am moving along very quickly now in the world of MS so I am not sure where my journey is taking me but somewhere, for sure.