Pond of Tears

>> Wednesday, January 13, 2010

The FW challenge topic this week is, Ow!  Well, I wrote an Ow! story but managed to get another one written where no one would know it was me.  This one came out because I had to write it so I could walk out of the darkness for a bit.  The whole time I wrote, I cried.  It was very hard.  I hope it's educational and not too emotional but I guess it's hard for me to separate the two right now.  Recovery is so hard.  A friend took me to town today and I was wiped out just getting to her car.  Next week I go back to my neuro-surgeon and get a chest x-ray to make sure all is sitll clear and then I should have a green-light to get back to work.  It will be hard, though.  I am so very weak.  So many are praying for me.  I appreciate that you pray even when you hear nothing from me for weeks sometimes. I have such a rock-steady group supporting me and bringing me to God's throne-room.  Thank you, thank you, thank you!


Christmas and New Year’s Eve came and went.  While everyone celebrated, I sat in a hospital bed lost somewhere between life and IV pain medications.  I barely knew my name let alone what I had agreed to have done to my body.

I sit in a pond of tears as each day comes and goes and I repeat the question:  is it too late to change my mind?  Maybe the many ow’s in my life haven’t been taken care of.  Maybe it’s my cross I have to bear.  When do I make that decision?  When do I stop fighting and accept what’s before me?

I guess ow is an understatement.  Drastic measures were taken to take away the incessant, unbearable pressure in my head.  In the last eight years I’ve learned what spinal fluid is and the effects if the body messes up and doesn’t take care of the excess properly.

I didn’t know about diuretics and I certainly never heard of a shunt:  a mechanism to keep the spinal fluid flowing and draining out of the body the way it should.

It took a long time for me to get a diagnosis.  While my life waned away, while I couldn’t take part in my kid’s lives, I fought for myself, going from doctor-to-doctor to figure out if I was losing my mind or if there was really something wrong with me.  It’s especially hard when friends, co-workers, and family wonder, too.

Still in a pond of tears I type.  I have to press on.  I have to educate in case others find themselves in this same predicament.  I travel about three hours to a neurosurgeon that I referred myself into.  That alone is a miracle.  He told me I have Pseudo-tumor Cerebri.  Isn’t that scary?  Or not…  I have a fake tumor?  That made no sense.  Another name is Benign Intracranial Hypertension, high blood pressure in the brain.  There is no rhyme or reason to it.  It’s pretty rare.  Not only does it affect women but also men and children.  It’s ruthless.  It stops lives.

It’s tried to stop my life and in a big sense it has.  I work but I come home and fall into bed.  I’ve missed years of my kid’s lives and my youngest barely knows me any different than what I am.  I don’t know how my husband’s put up with me this long.  Just a lump in bed is what my family sees most of the time.

I keep fighting.  I had a shunt placed in my back but it never quite agreed with me.  I had many surgeries to fix it.  It got infected and could have taken my life if it wasn’t caught in time.  I went for months without another but life got too hard.  Fluid flowed into my head and made me feel as if I were in a dream – no, a nightmare, a nightmare that never ended.

I learned a new term:  foramen magnum.  That’s where this new shunt is now placed.  The back of my head was shaved and cut into.  Somehow, I don’t really want to know how, he maneuvered it into the space and stitched me up, also placing valves so fluid can be drawn to check spinal pressure.  Without shunts, my only other option is very painful spinal taps.  Again, big owies.

My spinal fluid now drains into my pleural cavity.  Once I got home for about a week, I realized the ramifications of a body that didn’t like that choice.  My lungs filled with fluid and I was transferred back to Chicago by ambulance.  God intervened and I still have the tube there, the place my doctor fought for and made my body fight for.  It can’t get plugged up there because it has a negative pressure, a perfect place if only my body will keep accepting it.

What if it doesn’t work?  What if I’ve made the wrong choice?  I have to step out of the darkness at some point and accept what God has for me – good or bad.  I know I can keep on because His Spirit is in me, constantly crying out on my behalf but I have to be reminded.

My ow’s in life have drawn me close to God and also made me lash out at Him.  Recovery’s hard.  I sit in a hole I’ve crawled into, big enough for one, but I feel God beside me.  I cry and hide and wait and cry some more.  I’m done.  For now.  No more.  I hope and pray I made the right choice.

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