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.

Empty Nose Syndrome and Doctor Freeman Mayo Clinic

September 24, 2013
A year ago I was hit with a hammer in the head (not literally) doctors found things in my body, too many things and I was not ready to deal with them.  I had a surgery on my nose to fix the broken. I was told the septum was broken caused from septum Chemo. However I have issued with my right nostril since I broke my nose at ate fourteen. I think if anything all chemo did was finally crush it in.  I said no to a biopsy, no regrets. I said no to the ear surgery with the BAJA implant, no regrets.  I  asked my family to respectfully give me the time I needed. Well it seems the time has come.

I was encouraged when I saw Dr. Barr's  told me my ear looked better.  Not as swollen and red, the carcinoma is still in tack.  He asked me questions about proceeding with the Cochlear BAJA procedure for people with SSD (single sided deafness)  While Eric and I were in Tahiti, my right ear started to drain non stop and without going into too many details,  the smell was disgusting. The draining and pain took me back to my childhood. I dealt with this on a daily basis for years.  I was hesitant to see a new ENT.  Dr. Brian Borland had been my doctor since I was three.  The last time I saw him was when I was twenty nine.

I was referred to Dr. Barr's by another doctor at Mayo Clinic.  I love him,  although he works in the ENT department his official title is Otorhinolaryngology.  He is one of 12 doctors in the United States who do what he does.  I again am blessed not only with another great doctor but one who I can tell loves his patients and has been extremely helpful in explaining everything.

Since the last time I saw him my eardrum had broken again. Unfortunately this will require a more involved surgery.  I was waiting on the ear surgery until I was done with having dental surgery with Dr.  Paul Kelly.  This will be my third surgery with him and finish up the dental implant.

My 1st appointment was with Anthony Mendez P.A. He takes care of  all the nose issues for Dr. Barr's.  He very compassionate and kind.   After some idle chit chat he asked me some questions about my ear, then my nose.  Then came the time--here we go--the moment he sticks  2 sprays in each  numbs the nostril and the the throat.  To be quite honest it tastes like crap. It made me choke. I presented this young doctor with question "Do you enjoy looking up the noses of people all day?" he responded perfectly " I love my job" my reply made him laugh "Well I guess its better than other body cavities you could be looking at all day" This created a lot of laughs for him and I. While it was numbing he showed me my x ray--the septum is now in line the way it should be.  However in order to have that happen the doctor had to take great skill in removing the entire turbinate from the right side of my nose then he said "Let's just hope you don't have empty nose syndrome, that is an awful diagnosis" He could see the fear on my face and immediately started to back track, he said "No worries, it's probably nothing let's take a look"  1st he stuck the camera in my ear so I could see the left ear and the right ear--there it was on the big screen in front of my.  Wow, I thought it was a pin hole in my eardrum, Dr. Barr's could go in and fix easily.  NO, my entire eardrum is blown out in perfect circular form.  Now for the nose, he 1st looked in the left nose--looks good no boogers ha ha--then the right nostril--again no embarrassing boogies--but an extreme difference from the left, I could see the carcinoma and the hole.  With that being said, Anthony then gave me the diagnosis we were not wanting to hear.  I have empty nose syndrome. I can literally hold one nostril closed and still have air come out of the other, but the blockage feels like it is between my throat and nasal passage. Turbinatesd are important for the typical person, it sends messages to the brain when something is wrong in your sinus--mine is empty so therefore I cannot control the continual drainage or dryness of my nose--there is no surgery--but he gave me a medication to try daily.

Now on to see Dr. Freeman, my favorite pain specialist, he makes me laugh every time I see him. He will be injecting my right hip today, and my lower back.  My lower back has become a huge issue and has caused me to faint with pain, or my knees to buckle up and give out on me because of the pain.
As I am waiting in the "complaining" room today more typically known as the "waiting" room all I hear is complaining people, today a lady walked up to the sweet receptionist and demanded someone take her back and show her where her Physical Therapy will be (starting in 2 weeks) "I need someone to show it to me NOW" for some reason she reminded me of Veruca Salt in Willie Wonka and the Chocolate Factory "no daddy I want it now" WHOA lady back it up and settle down a notch was my thought.  Sitting directly behind me I could hear the couple arguing about why Mayo Clinic makes them fill out all these paper works--none of the other doctors do that...blah blah blah....the lady behind them pipes in and says "Oh Mayo Clinic loves to give us all extra work to do while they take up our sweet time in this waiting room waiting for doctors to get back from lunch" I did have to laugh out loud about that statement, I have felt that before too, but I do understand the paper work on pain related issues they need to know what level of pain you are experiencing now, not 3 months ago.
This woman was so sarcastic and rude to her daughter who was trying to help her get the papers done as soon as possible and this woman was being of now help to her at all--she said at one point "just mark all of them, my whole body hurts" the daughter being as patient as she could said "mom lets take this slow, is your pain constant but changes in intensity?"  she still continually belittled here daughter and  it was getting frustrating for me to listen to. I closed my eyes and wondered who of my children will take care of me, or will they send me alone or with a caregiver, have I been good enough and kind enough to them that they would want to help me?  Maybe this lady would feel different if she had no one to help her, I'd give anything to have a relationship with my mom.  I remember all of the prayers in my behalf, all of the kind gifts left anonymously on my doorstep, have I give more than I've taken?  if so I need to work on that one. I hope I never treat anyone like that.
Next is me, as they call my name I see Dr. Freeman in the hall and say "don't make me wait too long" he smiled and said "be with you soon" and soon he was, he asked me if I was writing in my journal I responded "yes, I always do when I come here, there is good things happening in your waiting room, and I want to remember them" he said "I hope you wrote that I am your favorite Doctor, so its worth listening to all the complainers"  I showed him where I did just that, my 1t line was now I get to see my favorite pain specialists.  As he gave me the injections, I told him "I don't like you anymore, this really hurts"--he said "but I will be your favorite in a few days, so I'm not worried"  I went off to recovery until I was stable enough to walk and drove home.  That is the update more to come in the next few weeks.