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.
Saturday, June 11, 2016
|Recker had a hard time leaving his mom at the hospital|
Today as I sat at the hospital and rocked Theo to sleep I couldn't help but wonder what wonderful memories he will bring to our family. He is perfect, I simply love him. It's interesting when siblings are born into the same family with the same genes but all turn out looking and acting so differently.
Friday, May 20, 2016
Today a whirlwind of emotions over powered me and allowed me to reconnect with what is really important in my life. Kayla came by with the boys, Recker is now 6 and a half years old. He is non-verbal but I believe he knows exactly what we are talking about, he has emotions and feelings. He came in and hugged me, I said "I love you" and in his own way he showed me he loves me too. Then little Ezra hugged and kissed me. I said "I love you" he replied "I l@#$% you" interpreted it says "I love you too" he now says Bon Bon, Papa, all the families names, mom and dad he will also repeat anything we ask him to.....he is trying so hard. I took them all to lunch enjoying every moment I had with them. Kayla is 9 months pregnant, she will be giving birth to her 3rd son our 4th grandson. Ezra is so cute he smiles and laughs at everything and everyone. On his hand he had a happy face and a sad face drawn I asked him what they were he said "Happy" and smiled really big with his huge cheeks I wanted to squeeze. Then he pointed to the sad face and said "Sad" and quickly showed me his sad face. "Very good Ezra, which emotion do you feel now?" "I happy" I left them feeling blessed with these special boys Heavenly Father has entrusted our family with. I say sincere prayers daily asking the Lord to help me know as a grandmother how I can better understand how to love them and help them.
When I arrived home Blake was getting Weslie out of his car, happy thoughts rushed through my body. I hoped I could spend some time with both of them. I of course immediately grabbed Weslie, she is absolutely beautiful. When Blake let to go get food for he and Chloe who would soon be arriving I took Weslie in my arms and sang her a song I used to sing to Recker when he was her age.
I love you Weslie,
Oh yes I do.
I love you Weslie
Oh yes I do
When you're not near me I'm blue
Oh Weslie I love you.
I walked and rocker her for several minutes singing over and over the same words, when she finally fell asleep on my chest I laid down with her on the sofa. Examining every inch of the miracle straight from Heaven. Her eyelashes perfectly shaped, long and lush. I could feel her heart beat on my mine the smell of her skin angelic. An enormous amount of pride rushed through my body thinking about Blake, Chloe and Weslie they are a cute family. Watching Chloe mothering little Weslie is so refreshing I love her as a daughter, I consider her my daughter. Watching Blake being so involved as a father warmed my heart. Tears fell from my eyes, I have so many blessing to be grateful for. Nothing else in the world mattered at that moment. I was in awe.
I've wanted to transition the toy room we have upstairs to the downstairs room---this is a huge undertaking for me. Still recovering from my last surgery has been slower but I really want to get this change done. I began by going through all the pictures and separating them out. In the mess I found several letters from my mother. Now that she has passed on those letters are read by me in a different context. I believe she and I were trying to resolve a difficult situation however, seeing it from different perspectives was difficult for both of us. I feel good about the way I handled the delicate situation, just reading these old letters dredged up some old emotions I was not prepared for. I quit reading the letters realizing she is gone now and there is nothing I can do to bring her back. Heavenly Father is in charge and he will deal with this perfectly I have no doubt when it's my time to leave this earth the Lord will have this taken care of, take me in his arms and say I love you.
I rummaged through some letters from Blakes mission, he always has a way of putting me back in the right frame of mind. He really was a great missionary. Then I found a book Kaitlyn wrote about her brother she couldn't have been more than six or seven years old. She illustrated the book with her and Blake on bike rides going to the Library and then to water and ice...the illustration showed them bicycling and her yelling out to him "Hey wait up" Her sincere love for her brother came out when she said how much she loved him over and over, and also how grateful she was to have such a 'cool' big brother. My heart was again swelled to capacity, I was never the 'perfect' mom but my children turned out perfectly beautiful to me.
To end my night tonight I read a talk given by a religious leader Elder Neal A. Maxwell--the title of his talk was Enduring Well. I came to the conclusion it is impossible for me to completely understand. Because I believe there is an Atonement of Christ it makes it easier to comprehend why suffering and trials are about trusting in God to keep his promises.
I have been stretched at times in my life to the point of doubting my Faith and Hope in difficult times.
Anne Morrow Lindbergh wisely cautioned: "I do not believe that sheer suffering teaches. If suffering alone taught, all the world would be wise, since everyone suffers. To suffering must be added mourning. understanding, patience, love, openness, and the willingness to remain vulnerable."
Tuesday, May 17, 2016
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.
Tuesday, May 10, 2016
Saturday, April 16, 2016
When I came home from the hospital last week I was told to clean the open wound area everyday with a solution Dr.Lettieri gave me and to keep it covered. That night I came home and cleaned out the area and noticed there was a bandage or clear mesh substance covering the area. I began to clean and took that very important piece of integra out of my ear. I can tell you it was one of the worst pains I have ever felt and bled like crazy.
|Looking at this now, I can clearly see the integra|
|This is what it looked like when I went to see|
Dr. Lettieri--Integra Gone
|Day after surgery--Dr. Lettieri Blonde Proofed|
the integra...it won't be coming out this time.
Monday, April 4, 2016
On Thursday March 31st I entered Maricopa County Hospital for my post op to the surgery I had on Monday March 28th. I felt good, had no idea what was about to come out of his mouth. " We are going to admit you in for an immediate surgery it looks like things have made a turn for the worst" The surgery was not long but I was not expecting to be headed to surgery so had driven myself. Frenchie left to take care of some maintenance issues on the condos in Mexico and would not return until Friday night. I wanted him to enjoy his time away, as he loves to visit Mexico and I know this would be an in an out procedure there was no need to alarm him if not necessary, I quickly sent a text out to all of my children asking them if any of them would be available to pick me up after an unexpected surgery but to please not tell their father. I knew he would rush home only to be waiting on me when he could be enjoying the cool breeze of the ocean. Of course this escalated into a full blown major even when Blake decided to call his father and tell him what was going on, without actually knowing what was going on. I ended up calling my sister Sonya and she was able to work out picking me up. She said Dr. Lettieri explained to her there was some infection to the peroded gland. Sonya picked me up and drove me home where I rested for the rest of the day.
Sonya mention when Dr. Lettieri talked to her he told me the cut on my neck is an open wound, he stuffed it with antibiotic beads. I've never heard of them and have to admit I was curious; but I was told not take the bandaging off. Last night blood was dripping and causing the bandages to loosen up. I text Dr. Letieri and asked what to do, he said to keep it covered with an ACE bandages around my neck to keep everything sterilized. It was never sterile, it dripped constantly their medicated bandage was falling off bit by bit, piece by piece....believe me it was not sterile. One morning I was changing the dressing because it had so much blood, it was very difficult to keep it from leaking. The packaging and taping they used caused the sharp edges of the tape to gouge my neck.
|Anti-Biotic Beads--they look like teeth|
Dr. Lettieri place in the open wound on my neck, if that is the surgery it should be quick and I should be home to my comfy bed before noon. Giving me enough time to heal and be on a plane for St. Louis on Wednesday.
I was told when being released from the hospital exactly what I was suppose to do to keep this doozie clean. It was stuffed with saline soaked gauze, then a dry gauze over that then wrap it up with an ACE bandage to keep it all sanitary and clean. Pulling the gauze off was brutalizing. Not enough pain medicine could keep from wanting to scream out in pain. I soaked it with as much water as I could.the started to peel away the gauze it was dry and bloody.
|now that is impressive|
Monday, March 28, 2016
I had a hard time sleeping last nigh with only 3 hours before surgery I at least tried. I'm not anxious about the surgery or Dr. Lettier. Again this morning doctors and nurses all had positive things to say about him. One nurse said "Oh My Gosh, I would not have any other trauma surgeon work on me. The anesthesiologist and his assistant mentioned him as colorful. I know he tries to come off as a hard butt, I've seen it with the residents when they make a mistake. However, I know Dr.Lettieri and know he wants to teach these young up coming Doctors how to do procedures the right way, the first time. He explained to a resident at Mayo if he had not known what I was going under sedation for or understand where I've been, my history, fears and anxiety this cute little resident could have cut off the wrong ear, or with other patients the wrong arm or leg. Yes, he was a little rough with him but respectful in showing him the correct way. At that very moment I knew he was the surgeon for me.
So he gifted Eric and I with his present explained exactly what he was gong to do, then they talked real estate---blah blah blah. When he left for the surgery room Eric sat next me to and held my hand telling me how beautiful I was. Seriously Nerium works, my skin has never looked or felt better. Several nurses hearing him talk about my beauty were so interested and rushed over to our little pod. He then told them how beautiful they were and how refreshing it was to work with such happy women and men today. All three of them were shocked, it was as if no man had ever told them. Eric snapped a picture with me and them for my blog.
One nurse said when I walked in, there was aura around me, she could feel my energy was one of happiness. This made me smile without hesitation, she was seeing past my own insecurities. She then asked me to go remove my make-up...very proudly I announced "I don't have any on" she quickly grabbed by chart and sighed..."you are 53 year old?" me "yep and proud of it" her " I want to try it, and even sell it if I can." me "Of course you can, here take this Success magazine and I will get you a sample just as soon as I can get your phone # and email address. (email sent before I entered surgery).
She then asked me about my journey with Nerium, I told her the truth, my life, just like everyone else is full of trials, most we cannot see. I joined Nerium 2 month before the facial paralysis. I told her it was an inspired intervention, I've now had 10 surgeries with Dr. Lettieri and 31 total in the past 6 year
at Mayo Clinic with some pretty special surgeons. I have never slowed down sharing everyday, magazine, bottles, videos, 3 way calls, etc....10 core all the way. The most important things she loved about Nerium was the Happiness Movement and the Night Cream. I wish the person who told me "If I spent more time on Nerium than I did on #happyacts for the #marchtohappiness I would be making a lot more money, would have heard this conversation. Nerium graciously allows us to do all of them at once. I do, I am always prepared with Live Happy Magazine, pass a along card and stickers--but those always when appropriate come with "Have you heard the buzz about this amazing Anti-Again named Nerium" I always do at least one #happact a day and feel uncomfortable sharing those on social media, I've always been taught acts of kindness should be done in quiet with a reverent heart. But since it was the challenge for March 20 being the international Day of Happiness--they asked us all to do an act a day and post it util March 31st. Surround yourself with like minded people, I happen to enjoy sharing Nerium and sharing a cookie or two,