|Before Surgery this actually looks really good in comparison|
to the previous months.
Monday, August 22, 2016
Friday, August 19, 2016
Ok so I haven't been the best at blogging my true feelings about the unfortunate facial paralysis I have. Here is a quick synapse of what has happened just in the last 2 years.
- Mastoid (layman's tumor) in the inner ear canal, burned black skin, very long difficult surgeries.
- Woke up one day with the right side of my face partially paralyzed--spent 3 weeks in the ICU and had 3 surgeries to find out exactly what happened.
- The nerve in my face that controls the right side went completely dead--no reason except an infection we had a hard time getting rid of.
- I was told to go home and learn how to deal with the new face, Eric was told "Get used to your new wife, she will never smile again." (I love this Doctor, I am just stating how we heard it, not necessarily how he delivered it.)
- Went to Cleveland Clinic for 7 weeks waiting to have another at least 12-15 hour surgery. Had what I thought was a near death experience.
- Came home to Arizona, searched for a surgeon who specialized in facial trauma...found him, love him and he's at Mayo Clinic or Maricopa (options are nice)
- Had a nerve crossover surgery (layman's...they took the nerve from my calf and threaded it through the left side of my head, down to my cheek.
- Waited one year, and the nerve grew one inch a month--Dr. Lettieri very pleased..me too.
- Had the next part of of the nerve surgery, everything was great until it wasn't...infection again this time compromising the parotid gland (Layman's--your saliva gland)
Thursday, August 11, 2016
I, like John Lennon hope everyone, especially my grandchildren will live in the moment, I imagine them all living in peace, judging no-one along their path but instead handing them a dollar or two, and asking the Lord to bless them in their trials. I imagine them having no greed and living true to their believes with integrity. I wish for them to see ALL men and women as a brotherhood and sisterhood giving, sharing and helping each other. Yes, and just like he was judged as a dreamer I am judged as an optimist--dreaming and optimism are wonderful attributes to have. As gloomy as the world seems right now we all have so much to be grateful for and as the song says Imagine all the people living as one and sharing one world. I see this happening and often times it is when I am asleep dreaming; so there you have it I'm a dreamer and an optimist.
In my opinion one of the most powerful words in the English language is Imagine; this single word gives hope to a world that is in so much turmoil.
Saturday, July 23, 2016
I'm so glad I attended the 1st Festival of Positive Education this past week. I had to evaluate whether this would be a good idea or not, given I just had surgery and still have a drain hanging from my head. Dr. Lettieri thought it was ok when I told him I was going. Boy am I glad I went, nothing quite compares to being in a room with others who share my same interest in making the world a better place, by teaching our children to love one another and themselves.
I was shocked at how many people came from other countries to be involved with this positive movement towards happiness. Dubai, Africa, Australia, Belgium, Bhutan, Brazil, Canada, Chile, China, Columbia, Finland, Germany, Greece, Iceland, India, Iran, Ireland, Israel, Japan, Jordan, Mexico, Napal, Netherlands, New Zealand, Norway, Philippeans, Portugal, Slovakia, Spain, Turkey, U.K., USA, Singapore and Switzerland. That is a lot of countries included in the Global representation. Well at least I was impressed!
Our country, the world as a whole is in turmoil right now. This is a Presidential election year in the United States and while I can't speak for everyone, a majority of people are perplexed and undecisive about who they should vote for. I usually agree and vote republican, but over the the last few years I've tried to listen with a silent voice trying to discern right from wrong, now I realize we are choosing good from evil. Maybe our politicians should be attending the IPENfest.
One thing I learned is to practice like an expert, be deliberate in all you do. Focusing 100% in the moment of what you are doing at the time is essential to accomplishing pure joy and happiness. Talent matters, but those are not necessarily the people who show up, it doesn't matter what your talents are if you can't show up and be present in the moment. When we allow our lights to shine on other people we are creating a ripple towards positive mindsets.
|Sir Anthony Seldon|
Oh look at that rock
Wow that duck is hungry
Why are the trees so green?
Mommy, did you hear that bird?
The wind feels soft on my cheeks
That is a cool garbage can (it was pink)
The lesson I learned on that very simple light hearted walk was amazing and something I have taken with me throughout the rest of my life. Children don't care about how many calories we are burning while we are walking, or that his hair was messed up and clothes unmatched. He didn't care because he chose them, it's what he wanted to wear and he did. I wrote in my journal that night, today I was not prepared to be Amazed by a child; yet I was.
What makes us change our perspectives? Look for the positive? I've tried and failed so many times at being 'in the moment' then I'm reminded of this walk and remember 'I can change at that moment; I have choices.' There was so much clarity on that day as we strolled along the lake at Freestone Park.
As times moves forward each new chapter or journey in our life is a chance to be renewed, take on a positive perspective and make adjustments where needed. We sometimes need to take a brain break; train ourselves with mindful awareness through our senses; touch, sound, sight and yes taste. Treat yourself once in awhile to a simple piece of chocolate, just don't indulge in the entire bar. Savor those moments in time we seem to want to move so quickly through.
One of the powerful lessons I learned at the IPENfest came from Martin Seligman. He said "Pessimism is a risk factor for depression, as smoking is to lung cancer." Wouldn't it be nice if we could diminish depression while our children are in elementary school by teaching positive education? Children need to learn the art of being happy before they hit puberty. In fact I would say they need to learn it before they turn the age of five, those first five years of life are detrimental for learning and soaking up like a sponge what happiness is. This starts in our homes, then should filter into our schools. Boy had I learned this as a child I would be far better off.
I loved each and every class that was available for me to learn from but I think the person I took the most from was Sir Anthony Seldon. He talked about depression, the demons he battled in the 1970's trying to get himself out of the space of depression and anxiety. I could relate to everything he talked about, I too have suffered from depression and learned a new way of dealing with anxieties. He talked about his wife who has incurable cancer living with this type of disease is extremely stressful on the entire family....yes, I know. I wanted to talk to him one on one, so during his book signing I waited until the line was gone and he was sitting by himself. I asked him how or if mindful happiness has helped his wife deal with her diagnosis. He spoke very softly, which was very much different than his presentation -where he seemed to have a 'bigger than life' personality, but now we were talking perspectives on the same level. He had a sacredness about him while talking to me. He didn't actually answer my question directly, but said they pray a lot. He could see the drain I was trying to disguise in my shirt...(it actually looks like a 'third boob' as Dr. Lettieri described it) and asked
"And what is your diagnosis dear?" I loved his english accent.
"I started with breast cancer in 2009....." and with a brief few sentences I gave him the gist of what was happening in my world.
We shared the same emotions in that moment of tears; an understanding that both cancer patient and care givers are brave and live in a world no one else can comprehend unless they've 'been there.' Yes, happiness is a choice and I believe we can control our thoughts and feelings by being in the moment however he and I both agreed on another theory. Trying to be happy every second of every day is difficult, it takes training and complete awareness. Life and tragedy happens if not to you yet, it will be knocking on your door eventually; how will you deal with it? Our theory is that even when life 'happens' it's ok to be sad, mad, anxious and scared those are natural God given tendencies, it's how we deal with the problem that really matters more than the actual diagnosis.
My awareness was heightened to a new level as I learned from the best positive psychologist and scientist in the world. I am so glad I took the time, got out of my own world and went to this festival of happiness.
Friday, July 15, 2016
I had an appointment with my favorite smile doctor, hoping Dr. Lettieri would take this drain out of my neck imagine my surprise when he said
"That drain is not coming out today."
"There's no blood, I want this thing out."
Dr. Lettieri has beautiful blue eyes, they were staring through me with a smile as he said
"I'm worried about the fluid that is in your drain, I just want to send it off for testing."
"Um.....testing for what?"
"Not to worry, but before I take out your drain I want it tested to see if your perodid gland is leaking."
"I understand Dr. Lettieri but I need this drain out, it's driving me crazy and I'm going out of town."
"No you don't understand."...he smiled, but with a concerned look continued "We have a huge problem if it's the parodied gland, then we are back to square one. I'm not taking it out yet."
All I could think of was he's trying to help me, I need to listen to him. I looked at him as he walked out of the room, totally confused.
When the nurse came in he said "Are we ready to take out that drain?"
I immediately said "Yes, let's take it out...." the door was open and Dr. Lettieri came running in and said
"Don't let her talk you into taking that drain out" Raising his eyebrows at me still smiling I wanted to smack him.
Then he proceeded to tell the nurse to go get what he needed to inject BOTOX into the parodid gland.
I said "BOTOX? What the heck for?"
"Before you get all bent out of shape, the BOTOX is injected into the perodid gland to help stop the draining, don't worry it will help."
The first shot of BOTOX was so painful I yelled out in pain saying "I'm going to kill you."
As he continued "No your not, I know it hurts like hell but it's what is going to stop that draining"
I'm not sure how many shots he actually shot into my gland I think it was about eight shots. With every shot the pain intensified. I could hear and feel it crunching through the scar tissue. When he thought he had hurt me enough, he asked
"So I'm assuming you don't want the remaining shot into your forehead?"
"Uhh....that would be an astounding NO."
The next day he called me with the results....."Yes it is the parodid gland draining, that drain is not coming out yet."
..."Seriously? Of course it is, you do know I am supposed to go out of town and won't be back until August 3rd?"
"Yes I realize that but it is not coming out, this is a potential serious problem."
Later I text him "Thank you for taking good care of me, I'm sorry if I was mean to you."
"Belive me, I've heard worse, let's just get you better so we can start on the nerve situation. I know the shots hurt but they will help close down the gland."
So for now I still have the drain hanging out of my head, and now my BAJA is leaking something.
Monday, July 11, 2016
On June 30th I entered Maricopa County Hospital with Dr. Lettieri (my smile doctor)
|Myself and Dr. Lettieri-just before surgery|
|Just to give you an idea of the seriousness of this|
infection. It is getting so much better.
Thank You Dr. Lettieri
Sunday, July 10, 2016
Two years ago I was diagnosed with partial facial paralysis, the doctor informed me my face would never be the same again. To describe my emotions during that time is impossible. I spent several weeks in the hospital, when released I was told to try and live a 'normal' life. Whatever 'normal' is to the world is not my normal...only 2% of people in the world have facial paralysis due to a nerve dying. The first year after my diagnosis I was miserable, trying to talk was unbearable knowing what I must look like to other people. My self esteem and self worth were in the toilet.
This past year I have been concentrating on loving myself. Focusing on who I am, where I came from and finding out where I want to be has been liberating. It has been the perfect prescription; it costs no money but required time and patience. I've studied the science behind happiness and in my studies have been completely blown away with what I didn't know. Evidence has proven that the connection between mind and body-between well being and physical health--it's real, I mean really real. There is no big secret here, sometimes I know at least in my life I've been in such a race to find what will ultimately bring me pure joy; when actually trying to FIND happiness is what has slowed me down. I do think there is some strategy involved and for me I deal with it daily to keep myself in check.
So many people have asked me "How do you stay so positive with all you have going on in your life?" The truth is I have times when I am feeling down or needing my well to be filled by someone else's truth, faith or hope. I've had a tendency to focus on being the 'perfect' wife, mother, sister or friend. I'm not saying those things are not important however there is a balance, at least for me that needs to be met. I've been forced to learn this amazing concept. I see so many people, just like I used to be who give up their personal happiness to make sure everyone else is happy. Slowing down and focusing on the thing that is right in front of me, right now has helped me to be present.
I recently read an article about living in the moment and being present, according to a study done on 5,000 people by psychologists Matthew Killingworth and Daniel Gilbert of Harvard University, adults spend only 50% of their time in the present moment. Basically what that says to me is we are mentally checking out half of the time. In addition to checking when people's minds were wandering, they collected information on their happiness levels. What they found was when we are living in the present moment we are also at our happiest, no matter what we are doing. So when we are doing a project we really don't find pleasant you can still be happier if you are 100% consumed in the activity than when you are thinking about something else while doing it.
This concept is so hard for some people to master, including me. Trying to bring your mind into the present moment can be a daunting task, however I have come up with some ways to help myself.
I am constantly thinking about my next surgery before I've had a chance to recover from the last. When I notice myself doing this, I try my hardest to nudge myself back into the present consciously learning to observe my mind wandering behavior away from the future and into the moment. To retrain your mind you need to be consciously aware of the pattern your brain takes you in while it's wandering. Having my grandchildren around has helped me to stay in the present, I don't want to one day say "Wow, here I am with all my family around and I can't focus on them, I'm too worried about this or that." If you are with your family, put your phone away, turn off the television or radio. Take a break from modern technology and seriously enjoy life for a day without the stress of the phone. Who ever developed the 'smart phone' was truly smart, but did they take into consideration how much time would be taken away from family? On Sunday's all of our children and grandchildren come for dinner. Last night I was trying to discuss with them a new idea I had for our family to better strengthen our bonds. I looked up and every single one of them were on their 'smart phone' they didn't hear or listen to one thing I had to say! Them not listening to me was not the shocking part, it was watching all of them engage in whatever was so important on their phones. I decided we will drop the phones at the front door on Sunday's to enjoy the moments with each other. I'll have to get back to you on that one, I'm not sure how it will go over with everyone but I'm willing to try.
So how do I bounce back? Through my studies I've found that with practice, everyone can develop resilience. It's not easy, at least it hasn't been for me. I've learned my capacity to adapt to challenges has been unwavering. I'm not sure why, I haven't attended any resilience training I just know I am in tune with my own body and spirit. Just when I think I can't handle anything else along comes a new trial but I seem to thrive in the aftermath of adversity. Every person is different and needs to find what works for them. I find doing acts of kindness helps me with my resilience and helps me cope with the past, present and future. This is what I think it takes to be a strong resilient person:
1. Have core beliefs that no one or nothing can shake.
2. Try to find meaning in the stresses of everyday life.
3. Try to always be a positive person.
4. Face the things that scare you; don't run from them.
5. Reach out for help from others---I'm working on this one.
6. Keep your brain active by learning new things.
7. Get out and move, exercise everyday find something that is reasonable for you and stick to it.
8. Do not dwell in the past, or beat yourself up over things you cannot change.
9. Own your strengths and weaknesses, recognize why you are unique and write it down.
Thursday, June 23, 2016
Today I am grateful for the good and bad experiences I've had in my life. I've had a few friends diagnosed with breast cancer over the past few months. Each one of them have had a lumpectomy no chemo or radiation. While a part of me wants to ask....why I didn't catch it sooner, the inner spirit in me says the Lord has a plan for me. I may never know what that is, but I continue to have faith and hope for continued strength to help me through this earthly life.
Today as I scrolled through Face Book reading updates on friends lives, I read one of them was told she was CANCER FREE by her physician, I was thrilled for her, but the comments were what intrigued me. Almost everyone of the 200+ comments said God is Good. I agree God is good, but for someone like me who has been dealing with health issues for almost 7 years now I had to question....isn't God Good to everyone? Although I continue to do all I'm asked to do by my physicians I also continue to have heartache after heartache; my body is not cooperating. Some people have been bold enough to say this is due to my lack of faith. I, in no way believe I'm not as good in the eyes of the Lord as these other woman are but I would be lying if I said it didn't affect me. While I am honestly happy for these friends, I never want anyone I love to experience what I've been through I do not believe it has to do with how much faith I have. I know without a doubt the Lord loves me and has a purpose for me here on earth. I'm trying to be the best woman I can be, trying to give unselfishly, serve others with a thankful heart....not because I think I deserve some great reward of complete healing but because I know when I serve others it makes me feel good, and in a strange way, maybe other people cannot understand it helps me feel hope for not only my future but for the future of those I serve.
Yes, God is Good he is in charge of my life, I am in charge of how I react to it. I have chosen to not step around the fire but to run through it knowing on the other side will be safety. The peace I feel knowing I'm ok with who I am from the inside out is becoming more and more real as the years pass and the reality sets in knowing my doctor was right....my face will never be the same again, at least not in this lifetime. I look forward to the day when I pass over to the other side knowing my body will be perfect again like a new born I will no longer have pain. Until that day I live each day with a smile on my heart and sincerity with my intentions.
God is good all the time, to everyone.
Monday, June 20, 2016
My body is not responding well to the skin graft. I met with Doctor Lettieri this week, we both agree I will be returning for surgery #35 on June 30th. Frenchie and I needed some time together, he has been working a lot of hours and I have been dedicating a lot of time to Nerium. One of the benefits of working for an airline is being able to make last minute plans. We looked at non-stop flights from Arizona to evaluate where we could get away for a few days, away from REAL life. My least favorite place in the world to go is where the spaghetti stuck--Las Vegas.
Free forty four minute flight, we are staying at the Aria. Funny thing about coming to Las Vegas, I need quiet--it's NOT....I wanted serenity......It's anything but that......Just walking through the casino all I hear is noise, the chattering in my head reminds me of every MRI I've ever had....only it never ends. We have spent the days by the pool, or staying in our bed until three watching movies, and talking about life.
Yesterday I noticed a man in a wheelchair with only stubs from his knees down. In that moment I wondered how this happened to him, was he in the war? Did he have a medical diagnosis? Quickly my mind wondered how it would feel to never be able to walk again, to feel the sand in my toes or the green grass rub the bottom of my feet. My legs are valuable, they have taken me to places I've always wanted to go, like my happy place in Paris. Now that I have experienced the joy of riding a bike peacefully through the tree lined paths of Porte Jaune picking wild berries, stopping for a rest next to a beautiful lake with graceful swans commanding the water beneath their wings I can't imagine never being able to do those things again, they bring so much joy to me.
My legs have helped me run hundred's of miles and cycle thousands. More than the run or ride itself I have learned to appreciate, and love my legs. While on run's I have shed tears of pain, cleared my head of demons and crossed the finish line with a smile. I took my smile for granted, I believe we all take so much in our life for granted. Why do we wait until a medical diagnosis or tragedy to appreciate all that we have? This past year I have taken time to really get to know myself, I've been working on being ok with who I am and how I look. I've had to dig deep and find the potential in myself, the guidance from the spirit has helped me to overcome over whelming thoughts of desperation and loneliness.
With the diagnosis of partial facial paralysis comes a variety of issues I've never had to deal with before. Only one eyebrow lifts, only one eye freely blinks, my lip is completely paralyzed so eating is difficult. When I chew one eye blinks, food get's caught inside the right side of my mouth, and my mouth bleeds as I chew off the inside of my gums. I usually don't know it's bleeding until I either taste the blood or the napkin reminds me as I wipe my mouth. Going to the dentist to get my teeth cleaned is difficult for everyone, my mouth has to be manipulated with tools to keep the right side open and it hurts, flossing is even harder. My right eye does not blink naturally, I have a platinum piece in my eyelid to help but my eye dries out so easily and that too is painful.The truth is until each of us love ourselves, I mean truly be ok with the person we have become I don't believe we have the capacity to truly love other's unconditionally.
Whitney Houston sang a song that comes to mind the words are poignant and been extremely important to me this past year.
The Greatest Love of All
No matter what they take from me,
they can't take away my dignity.
Because the greatest love all is happening to me,
I found the greatest love all inside of me.
The greatest love of all is easy to achieve,
learning to love yourself it is the greatest love of all.
Showing integrity when people are watching is easy, because we want to please those around us, those who watch every move we make. I would be lying if I said I am perfectly ok with what I see in the mirror everyday...but to say I am moving in that direction by learning to love myself is a great accomplishment for me. If I could have one moment in time when I completely forget myself, my physical looks, learn to see myself the way our God see's me--I suspect I would learn in that very special moment something I already know......In His eyes I am His child, I am beautiful--It's notabout the physical beauty--my heart is BIG--I love people--I haven't always! Now that the villain and the facial paralysis have invaded my soul I've learned to look deeper than the naked eye can see when I am confronted with a person dealing with their own demons.
I'm learning to love myself for the things I CAN do and not worry right now about the things I am physically unable to do. So, I may not be able to smile or feel the right side of my face but I have my legs and feet to take me to places I've never been. I have my arms to wrap around my grandchildren and I wouldn't trade that for anything. Simply loving myself, taking time every morning or evening to write 2 things I appreciate about myself has helped me to fight off negative thoughts the world throws at me. When I stumble I made a decision to re-direct, don't beat myself up being a kind and supportive friend to someone else is important for me, however I've now learned I need to be my own best friend.
Reminding myself of benefits such as better real life results, more perseverance, higher self-esteem, more inner happiness and stillness, more positive relationships with myself and other people makes it easier to stay kind to myself through life's ups and downs.
Sunday, June 12, 2016
|Kaitlyn and Phoenix- so dang cute|
Kaitlyn and Brian's little guy Phoenix is incredibly sweet, inquisitive and loving. This week I was sitting with him watching old pictures of our family pop up on the computer roll. Phoenix took my hand and said "Chair" so I sat with him and watched as the pictures rolled--oh so many memories. He pointed at each family member and announced their name in his own way. I noticed several pictures came up of me myself when I could smile, he pointed and said "mom" I said "No that's Bon Bon" he then replied with 'No, mom" When a picture appeared of me in Mayo hospital just after my facial paralysis, Phoenix said "Bon Bon" Talk about a dose of reality, I love Phoenix, I loved that moment with him. The innocence and authenticity of a child is unmatched and sacred to me. I love his honesty, he has nothing to gain or lose by simply saying it like it is. In that moment I realized I'm not crazy what I see in the mirror is what everyone else see's, and it's ok I wouldn't want an adult to tell me what they really see, it would be rude and hurtful, but having this moment with Phoenix has been constant on my mind.
I am grateful the Lord hears me when I tell him I want to fight, I want to be reassured by Him. His loving arms have surrounded me when I want to give up. I live in such a lonely world, not having anyone to relate to has been difficult. I know I have changed in so many ways, I'm not as out spoken as I used to be, I listen in a different way. I realize there are no human eyes that can understand what I am going through--it literally has been the hardest experience I have ever had. Eric has been a great care-giver THE BEST but still he does not understand the loneliness I feel at times. I am so thankful for Mark Christiansen who has been a great friend for Eric to lean on. I do not eat in public, it's a hurdle I am trying to overcome. Eric and Mark spend time together especially on days or nights when I just don't want to face the world.
As much as I understand the Lord knows what I am going through, it sometimes has not been enough for me to get through lonely nights of sorrow. There are some heart aches that I know I have to work out on my own--in the end, when I've done all that I can do to get through--He finally rescues me, He carries me through to the next challenge, just enough to give me some peace. I count each new day as a blessing but I am not afraid of death.
I remember nights when Blake was on his mission I knelt at his bedside and poured my heart and soul out to the Lord, begging and pleading for him to lift the heavy load at least long enough for me to see Blake return home. Now I want so badly to ask "Why is this happening to me, how do I endure and why am I still alive?" I'm tired, really exhausted trying to keep my mind on happy things only to be surprised with more bad news, more surgery and the fear of one more recovery.
I've felt forgotten at times and wondered if my prayers were being heard, many times it takes the tears and pain to pass for me to realize He needed to withhold immediate relief because He has bigger and better promises for me. With all that I've gone through I know He has a purpose for me I know if He always gives me everything I want I would not grow and learn. It's so easy to write those words but quite another story to live through it. There have been so many blessings that have been disguised and difficult to recognize.
I'm still trying to learn how to trust and believe in myself, it's so hard to have heartbreak over things I have no control over. Trading off earthly needs or wants for Heavenly promises that are unknown at the moment has been hard to succumb to. I am so happy but there are times I let the world define my circumstances; at those times I wonder if I have let the Lord down by not fully trusting in Him and His plan for me. I've come to realize the natural woman in me will always have doubt, fear and tears but no matter what He loves me, even when I hold back my heart for people who really do care about me. In spite of all my faults and mistakes He will always love me. It may take me more time to truly understand I don't have to earn His love He loves me just the way I am. He knows me, all of me my thoughts, my fears, yet He is always there for me.