Thursday, November 6, 2014

The truth stings

Hip and back pain, back in Dr. Freeman's pain clinic today at Mayo.  I love my doctors, he is a good man, they all are.  Walking into the hospital gave me uncomfortable feelings of remembrance, being in pain for me has become an issue  I won't address unless it get to at least on an 8 on a scale from 0-10.  The medicines for pain I despise.  When I walked into the hospital today I immediately looked to my left, this is where I watched a woman die while the paramedics tried to save her, and I was jealous, I wished it had been me.  I'm not afraid to die, but enjoy life right now too.

Mayo Clinic "the place"
The nurse came in with  Dr. Freeman  asks my name, birth date and asks "what are we doing for you today?" ha, umm for me or to me? without hesitation I reply "hurting me to take away my pain" how weird is that statement?  They both, not knowing how to respond say "where are we going to hurt you today" laughter "in my hip and lower back" He gives me trigger spot shots, and when he does he jiggles the needle around to make sure he gets the entire area around where the initial pain is.  Every time he does that I want to come off the table, he always says "almost done, I'm sorry it hurts"  I have not seem him since my surgery in at Mayo Clinic in the Spring, we were able to have a good private conversation about how I'm really doing.  That one is so hard to talk about, I'm not sure how I am doing, in comparison to what?
Recovery, drinking my daily routine
I have been staying really busy, working at US Airways, I have the best management and supervisor I could ask for, they really care.  Also, working on being Happy, trying to deal privately with, if my face has to stay the way it is right now, am I going to be OK with that? I don't expect anyone to understand how I feel, but at times I am lonely in THAT world. I have researched partial facial paralysis, gone to the library, online and trying to reach out to anyone who has suffered or is dealing now with this--NOTHING--I guess I understand a little more about what Dr. Barr's was talking about when he said this is rare for a nerve to just die, with no apparent reason.  This is not like having a stroke or Bell's Palsy where the nerve is damaged,  and WILL eventually snap back, this is a dead nerve, which means it will not live again, or regenerate.
This is what a dead nerve looks like--and it's mine.

Going to Cleveland Clinic to see Dr. Gastman was to take a live nerve from my ankle and replace the dead nerve in my head with a good nerve, hoping it will grow together with the nerves on either side.  IF this works,  we will not see any results for a year, and I will maybe get 30% of facial movement back.  If it does not work, they want to cut along my hairline pull my face back and take nerve from my left side of my head and connect it with the one on the right, then wait another year.   I'm not sure I want to go through that again.  Going back and forth to Cleveland Clinic is difficult for me, not getting results or answers is frustrating, wanting to say "WHY" is realistic on some day's.

Getting to hear for the 1st time in 48 years was fantastic, I heard things I'd never heard before, sounds most people I know take for granted.  That first night coming home was one of the most spiritual experiences I've ever had, without a doubt the Lord was smiling down on me along with Colby.  What I wasn't prepared for was going to work the next day, ready to share my new exciting news was quickly turned to sadness.  Actually hearing what people say about me, it hurt, none of them were saying it to hurt me in fact none of them know I could hear it,  and they all were saying it out of love for me--still the sting of truth hurts. Going to the store, watching people quickly look away when we make eye contact I've been able to get used to, but now hearing opinions I am the one looking down and away before eye contact is made. I thought I was going to make new connections and share in the beauty of small sounds, be able to give the gift of not taking for granted, the sound of a pen writing on a piece of paper, or the clicking of the keys on the keyboard as we making reservations, the fact that I could for the first time be able to turn the phone volume down. Instead what I heard was "I feel so sorry for her" "She is so strong" "Have you ever read her blog?" "I don' think her face is ever going to be the same"  "She used to have such a beautiful smile" tears ran down my cheeks as I sat and heard these words coming from I'm not sure who, as I am still trying to distinguish where sounds are coming from.  We have cubicles where we sit,  I quickly wiped my tears so no one could see, and took my BAJA off.  I haven't worn it since that day to work.
So proud of Mayo Clinic, this Cancer Center has been in the
works for year's, it's getting done, they will have a proton
radiation beam, the only one in the Western part of the
nation.  Proton beams are used to radiate certain cancer's and
can pinpoint to  99.9% . 
I am the one who get's to decide what my destiny is, what my life will be and who I decide to share my light with.  I love my co workers, I love my family and friends, but I need to be OK with 'me'.
I will decide where I end up, I'm doing what I can to figure all that out, and until I do I can't wear the BAJA.  I pick and choose,  and I'm taking it slow, because sitting in this moment right now, I'm feeling things I've never felt before.  My heart has never beat so hard in my chest than it has in the times when I've been wearing the BAJA.  I feel blessed to know, the people around me are sincerely my friends, they are kind and loving, at least nothing bad was said--just the truth--the truth I was not prepared to hear.  Reality is, I need to work on me, on my confidence, get rid of the negative and concentrate on the positive.  There's a fire in me that I can never deny, I know He lives and He loves me.  It is my faith and my hope over the years that has given me such peace, given me strength to endure and enjoy the sweetness of life.  However, I've tasted the truth and my heart will never be the same. That is not necessarily a bad thing, maybe I needed a taste of reality.  It's just going to take some time to process what it is He wants me to learn.
Off of my balcony in my bedroom, the moon
is beautiful tonight, this picture does
not do justice.  It is HUGE, YELLOW and
GOEGEOUS
I will wear the BAJA on the Sunday before Thanksgiving, to hear Stephen Phelps and the choir sing Come thou Font of every Blessing.  I have so much to be grateful and have been blessed with a good life---music touches my soul and helps me to heal.  It's just a longer process this time.

2 comments:

Anonymous said...

Dear Monya,
I come across your blog while looking for a golden retriever about 3 1/2 years ago. I have followed you ever since. I just want to let you know you are one of the most inspiring women that I have ever come across. You have had so many obstacles to face. I can't imagine the fear, pain, and difficulty with accepting the new you whether it's temporary or permanent. I just wanted to let you know that you are truly beautiful no matter what is on the outside. I myself have struggled with accepting me for me, so I know the struggles you are facing. You are strong - beautiful - and you got this. One who isn't afraid to die, shouldn't be afraid to live either. Thinking of you from SD

Monya Williams said...

WOW-- I sure needed to hear that today--thank you SD