Living in the Moment

Practicing living in the moment has been an intentional goal for my everyday living.  I have to  remind myself daily of the reward.  I've heard it takes 21 days to break a habit so I'm assuming it also takes 21 days to form a habit.
Today I will be seeing my surgeon Dr. Lettieri.  The last surgery I had on Thursday took me a little longer to recover from, purging my body of all the anesthesia is draining. Getting up and walking to the bathroom is about as far as I can go, even then I am wobbly, shaky and nauseated. On Sunday I was finally able to eat something, however it tasted of metal.
I feel like the world is hastily passing by just outside my bedroom door.  I'm praying Dr. Lettieri will take out the stitches and close the open wound on my neck.  The skin graft he took was from another area on my neck and those stitches seem to be healing well.
It's hard for me to comprehend that I have gone under general anesthesia 34 times in less than 6 years. Each time the healing takes longer and seems to weigh down my spirit.  I want so badly for all these surgeries to be over.  I believe now that this nasty infection is under control we can finally get going with the important issue of the nerve--yes, there will be more surgery; and I will endure.

My view from pre-op

Heidi my pre-op nurse--these nurse are always so sweet to me

This is what it looks like now, after surgery.
I see some bruising on my temple next to my
eye...I always wonder what the heck happens
during surgery to cause these bruises.

My life is so different now, I've learned patience and empathy for other's during the past few years. I've also learned what is truly important in life, family first, then friends who truly love me for who I am.  I've had to let go of a friend who I sincerely thought would be with me from beginning to end. I simply do not want anyone in my life who cannot be authentic.  Friendships are wonderful but when they become complicated and draining--I'm out! I refuse to waste precious time with people who do not reciprocate the same feelings.  I choose happy, with that being said I am not perfect and do need to say "I'm sorry" at times.  Part of the reason I have not allowed too many people into my life is the fear of being rejected or hurt.  I'm so over that now, I know who loves me and who cares I've learned to discern good from toxic.

This brings me back to the initial reason for making this post, living in the moment. I truly believe we are the equivalent of the few friends we associate most with.  If I kept myself in worry constantly wondering if I am offending someone I'm not being in the moment.  Spontaneously giving service to those around me on a daily basis, strangers who I will never see again have given me more satisfaction and clarity of the direction I want my life to go.  Living in the moment allows me to flow through life daily intentionally looking for ways to better myself by seeing the needs of others.

Dr. McDreamy

Been there, done that....never again....

That little black area is where the source of blood came from

So much for that shirt, bra and undergarments

I felt every bit of that blood trickle down

Ambulance.....? REALLY...?? I wonder how much that will cost me/

I decided to venture out of my hotel and see if I could find some pants, I only brought one suitcase and have run out of clothes.  I thought by now I would of had surgery and been home with my family, so I didn't bring extra anything....really, you can believe it, I'm a woman and didn't pack heavy--my husband should be impressed.
I made it to a Macy's department store and was looking on the sales rack (Eric you would be proud)
Nothing there, but while I was standing there I heard something behind me hit the wall, I turned to look and it was a significant splatter of blood.  Immediately my ear was gushing bright red runny blood, down my neck, I felt a puddle forming in my undergarments but was afraid to look--I grabbed my ear, sure enough it was not stopping there was blood everywhere.  The sales associate took me to the bathroom, sat me on a chair the blood was still gushing out, the blood was saturating the wet towel and I could feel the blood going down my throat as I put my head back.
Macy's called 911...... I asked them not to, because I don't want to pay the bill for an ambulance when I can just drive to Cleveland Clinic.  As soon as the EMT's came and saw inside my ear, they decided for me, and soon I was being lifted up into an ambulance.  I had to tell the history of my ear issues over, and over and over today.  To top it all off when I arrived at the Cleveland Clinic they rolled me into the emergency area and was told to put me in room 13............."No I will not go in room 13, please don't take me in that room, I'll wait in the hallway, but do not take me in there"  wanting me to calm down the EMT asked me why I didn't want to be in that room, I said "I'ts not a good number, it's bad  and I need all the blessings I can get right now"  he laughed at me and rolled me into room 13......YIKES--Soon Diana and her sister who live here came into my room they waited with me until a doctor could come--An ENT came cleaned me up, and called for Dr. Haberkamp however he was deep into a surgery and would not be able to come.  We waited for one of his residents to come, finally he opened the curtain and said "Hello"  I couldn't resist it I replied "Did you have to be so dang cute?"
  he laughed, and as he walked closer I could see he had a hickey on his neck, again I couldn't resist it...."Um, you know I can see that hickey, you're not fooling anyone" he laughed and said "I'll have to talk to my wife about that"

By this time  it had stopped bleeding......this was so scary I had no idea an ear could bleed that much--Originally, the EMT told us he could see the blood seeping from the surgery plug Dr. Haberkamp had put in to cover the nerve. Dr. Cutie Pie said there was a small black area in the bowl are of my ear where the  the blood was coming from. He said since I was seeing my surgeon tomorrow, I could leave and Dr. Haberkamp would assess it tomorrow.   I was so relieved, it was very very scary to feel that amount of blood gushing from my ear and not know what to do.  I just held it, probably a lot like I did when I was a young child, I remember holding it when it hurt.  I thanked the doctor and said have a good day "Dr. McDreamy"  I think he was embarrassed but he smiled.

Besides a migraine, I felt fine when I left the hospital.  I just wanted to go back to the hotel and sleep, I was exhausted.  I did my usual going to bed regimen, I was finally able to lye down and once again the blood started gushing. I remembered Dr. McDreamy told me if it started to bleed again to put some Afrin on a cotton ball and put pressure on it.  I did exactly what the doctor said, and voila' blood flow stopped.  I put some bacitracin on it, covered it with a cotton ball and band aid.....and off to sleep.

Opposition in all things makes me a stronger person

Another week of decisions not quite clear--however there have been changes that have been written on my soul.  My heart is forever changed and I will never be the same because of these experiences, sometimes I wonder if it better or worse..Mostly because I know when the storms come in my life they seem to rest and stay ever entwined in my heart until I can figure them out on my own. When I say "on my own" all that means is that I have to come to a higher mountain, much higher than the hills I've been climbing.  So many times I have been down or in despair but this time is the worse I have ever experienced, and forced me to get my knees calloused as I have begged for answers.  Many times I have spent times in my car, crying out loud wondering if I have been abandoned--no answers have come.  Earlier this week I received a beautiful note from a young girl who has come to be a 2nd daughter to us.  I was so touched by the wisdom she offered it brought me to tears, and it was at that moment, she needed to hear from me as well as me hear from her. I have not been able to get this conversation out of my head--It's words I've told myself over and over again, but somehow when I think them, they don't quite seem the same.  I've truly seen and felt the truth of the love our Heavenly Father, he's always there, right there just waiting to see how in tune I am......not quite on the same page this week--but the fact is, I am living proof that modern day miracles happen everyday--he hears every prayer, he knows every struggle--it has to make Him feel sad or disappointed when my complaints come in handfuls.  I imagine He thinks, "I've really out done myself with this young lady, she can't even see the possibilities and strength she has" I know this for sure, we can never enjoy the good in our lives unless we have felt of the bad or the trials that life often times brings.  We can't enjoy joy without living through some life changing events.

I will never deny what I have felt, and some of the experiences I've had this past few weeks are so sacred to me, I will not share them on this blog, but will keep them sacred in a draft for my children to read--maybe it will redeem myself from my last post--(I cussed) sorry about that--it was real and raw, should of given a disclaimer before you read.

I knew my family including my sisters would  be nervous when they read my last post--BTW--I'm not planning on killing myself--just at that very moment-I wished it was me, and I was happy for that lady at Mayo Clinic, don't misunderstand and send me emails as to why I shouldn't write or say what I feel--I am no longer amused nor do I want to be entertained by your negative energy.  I'll say it again, please don't read this blog if you are not willing to listen with an open heart--this is not your journey--it's mine--and as the Lord has created us all different we all have different philosophies of how to deal with life changing events--this is my way and I will not apologize for my feelings, and one more thing, I am a Christian woman,who rarely says anything other than what I'm feeling, this does not mean I don't also have to ask for repentance--EVERYDAY--mostly for the uncomfortable feelings I get when I read your emails of criticism.  With that being said, let me update on this weeks activities.

I began by getting my records from Mayo Clinic, we picked them up....we as in Frenches my driver. I am going to the Cleveland Clinic for my 2nd opinion, the doctor is renown for his facial paralysis reanimation surgery for people like me--when his office received the first batch of records and pictures, they were amazed at what they saw--Debbie, was friendly and more than helpful, and I do need to insert here my friend Diana Lents is the person who knows how to get this stuff done, not only that but she is a nurse and will be able to give me my infusions in my picc line twice a day. If Cleveland Clinic  does not work out with have a connection with a doctor from Baylor and Mayo in Rochester.  I insisted on Eric staying home--I can keep him updated--I don't want to put him through anymore than he has to, especially when he needs to work.  So now that I have read all of my reports from Mayo, I think I understand a little more of what is going on.  A quick synopsis is when I was 3 my eardrum was broken due to a blow to the head, with that trauma came many surgeries as a child.  I was told back then I would never get water in my ear--never did--at age 29 I had a mastoidectomy  removed. From that point on, I was told some repairs were done and I could not go under water--the first time I swam was in the Hawaiian ocean when I was 30 years old.  Skip forward to now, after going through chemo and radiation, mostly the radiation the beams stirred up some weird stuff in my ear.  I went a year ago to see Dr. Barr's, he suggested getting the mastoid out and to possibly do the Baja Implant.  I refused at that time to do it, just because I was racking up some surgeries at Mayo and at that moment I was not worried about it.  Skip now to October of last year, my ear began to drain again I went to see Dr. Barr's it was determined at that point it would not be a good idea for me to wait for surgery--we started on some anti-biotics to see how they may help, on December 10th Dr. Barr's went in and took out the mastoid, at that point he took some skin from my upper arm to create a new eardrum because it was completely blown out too.  I took a 2 month leave from work--everything in my ear looked good, it just was not healing like we wanted it to, I was concerned about infection but was told there was no infection and it had been tested by infectious disease.  I was also given a neurology appointment and consult--nothing. After a couple of months on antibiotics my ear began to heal, in fact they were extremely happy with the outcome.  Still one more surgery on the schedule to get all the debris out and re-evaluate, this surgery was successful but since the doctor in the OR before us went over by 5 hours I had to return for another surgery--even after this one it looked good--Dr. Barr's grafted skin from my upper arm to cover some spots that were beginning to show bone.  Now all was good, I had one week to wait for my follow up, Tuesday the night before my appointment, something popped in the back of my head near my skull , an immense pain took over my body,, and not wanting Eric to worry, I went into a different bedroom and hugged a pillow to scream inside it,  I crawled back in bed next to Eric around 5, I didn't want him to know anything was wrong.  I then drove myself to the Mayo Clinic and was admitted immediately. My face looked like it had palsy, no feeling on the right side, and my speech was off-I also could not raise that eyebrow or smile from the right side. This was on a Wednesday, on Friday I had another surgery--the pictures he showed Eric were nasty--it showed where he had taken more skin to graft around the nerve, but within a few days it had gone gangrene, and partially killing off some of the facial nerves. This is not palsy. Now we are a deciding point, as I visited in length with Dr. Barr's, I didn't like any of his options, and he was open for us to get another opinion, so we are.  I realize there is a window of opportunity for nerves, we are asking the family, close friends and now ward and stake members to pray for me and specifically for me to feel peace with  whatever decision we decide is best.  I want to include all my decisions with the Lord, he has not let me down yet.  With the strength of so many people praying I KNOW an answer will come, one that I will more than likely have to accept and forward in faith hoping I can find some peace--My face will never be the same, but it was never perfect before anyway--I'm ready--well I should say I am ready today and hopeful with all the fasting and prayers going out for me--the spirit will strengthen me to another height and again prepare me for what it is the Lord has in store for me, and what I'm learning will help others, even if it gives them a bit of strength to go on for another day, then do it again and again until life becomes a school of learning and a place where they too can pay it forward.

black dead skin December 10,2013

After 1st surgery in December--impressive staples huh?

January--looks like infection

April 28th Surgery

One week after my last surgery, in for a follow up my face has already began to take on a new look.

THIS IS MY SPECIAL TEXT I RECEIVED THIS WEEK--THANK YOU I NEEDED IT.

Your kids deal with situations like this very differently. Everyone was a mess. Everyone was crying. We all thought this was it. But your kids are also very strong. They get that from their mom. They are very good at keeping face in a tough situation like that. I think everyone just thinks that there is always going to be more time with you. That you'll keep fighting, because you have for almost 5 years now! We all love you so much, there are so many people rooting for YOU. There are still so many people who need to hear your story and feel inspired. You were given another chance a few weeks ago, instead of looking at it like another part of you missing or another surgery, think of it as another chance from Heavenly Father. You get to still be here on earth to see more grand kids, to see Mexico again, to watch your girls get pregnant, to see your sisters, to see more places with Eric, to sell more Nerium!!. I'm sure there were days 4 years ago going through chemo when you wanted to die. But can you imagine if your wish was granted then?? You would have missed all of your kids weddings, Ezra, Paris! I'm sure there were days when you were a little girl that you wanted to die. When the pain of your family wasn't going away. But look at your life Monya. Look at all the precious joys you've been given. Life sucks so bad, but with the bad you get joy in ten fold. I LOVE YOU. PUT ON YOUR FIGHTING PANTS AND KICK BUTT. I know how hard this is for you. You're handling it all so well. You can do it. There are so many people who support you and love you. And who will love you no matter what. You came very close to dying a few weeks ago. So right now the only thing that's going to get you through this is focusing on why you were kept here. And the things that keep you going. So many grand babies you don't have yet. So many things with your kids/adopted kids lives that you can't miss. My heart is so broken that you had to go through yet another trial. I want more than anyone for you to be relieved of the pain and misery. You're here for a reason, you're still fighting for a reason.

All I have is yours

Today is Sunday Jan 12, 2013

Well I did it, I went to church today, and was able to sit through all three hours, yay, pat on the back for me.  I was not feeling well yesterday and stayed in bed all day, except to get sick.  I also spent a very quiet Saturday, literally.  The kids all went to Disneyland, Jeremy Kayla Ezra and Recker spent the day together, and Eric was at work, honestly I was relieved to be allowed to just do nothing, but rest and pray I can go to church.  I made a goal to at least try to get through Sacrament, but I was able to make it through Sunday School and Relief Society.

I wish I could truthfully say it was easy, I can't.   This was a huge eye opener for me today, and I caught myself several times in tears.  I walked in a little late, Eric saved me a seat.  Just before I left the house I went back and forth to my room twice to pray....."please help me to understand what they are saying" that was my 1st prayer and not feeling quite happy with it, I walked back upstairs knelt next to that all familiar place next to my bed and poured out my heart, "I know you are teaching me something, or trying to, am I so hard headed that I am not getting it? please Heavenly Father, help me to listen with my heart today, even if I can't understand what is being said"  I waited a few minutes with my head low and eyes closed, expecting something, but it never came.

I was met at the chapel doors by President Packard, (one of my favorite people of all time) he had his head down with folded arms, so by this I knew the prayer was going on, I waited watching him, I could not hear one thing being said so watching him gave me the indication when the prayer was over. He shook my hand and we greeted with a sweet hello. I'm wearing a mask, so our eyes smiled.  I have never been frightened to enter the chapel, but today I was, until I saw Eric stand and help me get seated.  Marian tapped my shoulder and smiled, what a comfort if she only knew what I was feeling.  How will I communicate with these people I love so much, I can talk--that's never been my problem--I wonder why not? why didn't my mouth get reconstructed?  It's usually  the one thing that gets me in the most trouble, if you've followed my blog or know me well you know I don't keep much to myself. This has always been one of my downfalls, and hardships in life......just say nothing.....maybe this is what the Lord trying to teach me....for so many years as a child and youth I kept quiet through the rough times, after all we were the All American Family, I think once I gave myself the permission to speak I never shut up....ha ha.

I sat through Sacrament, having to constantly ask Eric what the speakers were talking about.  Mary Greer Spoke today and props to her, I could read her lips for most all of her talk, she is amazing and has been through so many trials this past year.  Just an amazing family the Greers, Julie is wonderful I love her, and I can see the growth and comfort she and President Greer are giving to Mary and her very small children after the death of Mary's husband last year.  Sunday School I caught very little of what was being said, it's so hard to explain I have about 25% hearing in one ear, and it happened over night, I have a very difficult time hearing when there is a group of people, I had no idea who was reading, quoting or commenting (one of those tearful moments)  When I only had hearing in one ear, I thought I was a pretty good lip reader--come to find out--I'm not--If I am talking to someone one on one I do really good, but when noise is coming from all around me I have no idea where it is or who it is.  I'm so glad Haleigh was with me in Relief Society today--I've always been a believer that nothing happens in life as a coincidence, I know if Haleigh was not there I could of easily asked any woman in that room to sit on my left side and help me to follow along with the lesson, but I loved having my sweet baby girl there, she whispered in my ear when she thought I didn't understand and she was right every time.

Today I have been thinking about a dear friend of mine who was killed by a drunk driver years ago, she and I worked together.  She taught me so many words in sign, it was something I enjoyed and always wished I had taken more interest in a class or two--I know I wouldn't be able to communicate in this way with my family or with anyone else who didn't know sign. But Blake didn't know how to communicate Spanish when he went on his mission, he came home and knows the language. Is this what I am supposed to learn?  Could I go on a sign language mission?  Remember these are just my wonderings--my mind goes places sometimes--like today.

And now here I am tonight, I can't sleep, worried about too many things.  I took a bath, listened to uplifting music with my ear phones on, so as not to wake the family with the speakers full blast. I went into Haleigh's bedroom read some of the Preach my Gospel, and finally decided to pray.