Friday, 12 December 2014

I'm Trying ...

 


I'm trying...

I have missed a few blog posts so today I will post three.  First, I went to Cleveland Clinic, had my surgery with Doctor Gustman, then flew home with Eric to recover.  I'm getting good at this.  I do not like the pain medicine, Eric gets upset if I don't take it, but I try to muddle my way through without using it.

I received an email message from one of my physicians who reads this blog, so this is for him... "You made a mistake on your blog, which was your 21st surgery in less than 5 years" "Well excuse me for the miss count, btw your nosey" "No, just want you to be exact" So there you have it, yes, I have nosey physicians.  It's a good thing I love him enough to care that he was kind enough to correct me and that I never say anything on this blog I wouldn't be proud for them to read.

I want to add this little tender mercy to this blog post because it is another one that truly took me by surprise.  I have been involved with a company I feel the Lord placed in my lap a year ago for a reason, He knows how much each of us can handle, and knowing what was about to make a life-altering change to my life, He knew I needed to be with people and circumstances that could bless my life, and it has in such a precious way.  I have made lifelong friends, who never knew me before my paralysis or cancer diagnosis.  Most don't know my story.

I recently was invited to listen to a conference call by a woman who I had already admired, for her down-to-earth, funny, humble way of telling the story of how she and her sweet husband have gotten to where they are today.  Like always I was sitting on my bed with my phone in conference mode with my notepad ready to take notes and learn something that may also help me in my venture.  I was not prepared for the emotion I would feel when I listened in.  So many who have followed my story know I use the word HOPE so much, I have studied it, pondered it, lived it, and tried to wrap myself up in the warmth of that word.  Mariel began to speak with her team, (everyone on the call is muted) that's a good thing because it was not a minute or two into the call when I began to blubber like a baby.  It was as if she was speaking to me directly. (This is not the case she had about eight hundred people on that call) I am not going to go into all my notes, mostly because I stopped taking them at this point.  She was directly delivering her message to me.  Gracefully and gently, she spoke of HOPE.  Giving HOPE to others during a time in life when so many just need to know there are people in the world who care, and who want to help make a difference. It's been 6 months that I have dedicated myself to doing something kind for someone every single day, I have been successful in doing this, and it has changed my life. It doesn't take away my own needs and realities, but it has helped me to become a better person and to learn that when I fall, I can be lifted and reminded of my potential.  I've been reminded once again time after time as I'm guided to people daily that I have so much to work on, so much to learn but by taking the hand of others like Mariel and Frank I can be led and guided with thoughts of goodness and mercy and do it with humility and grace.

I had a few days off for recovery after surgery but started back to work last week.  I love my job at USAirways.  I really had a breakthrough last week while working.  Not the place I thought this would happen, but anymore I am never surprised at what, where, or who touches my life in a significant way.

I was taking a reservation for a man, just doing my job when out of nowhere he asked me if I was OK.  Not knowing exactly what he meant I asked, "Yes I'm OK, does it seem I am not doing my job, or have I offended you?" "Oh heavens no, just the opposite you are lovely to talk to, and today I feel grateful it was you who answered the phone" A little stunned I thanked him and finished up his reservation, when I asked if there was anything else I could do to help him he said "Yes, you can" thinking he was going to either change the reservation, have me send him to rental cars or add his dividend miles number, you can imagine my surprise when this is what he said "Did you recently have a stroke? I don't mean to be nosey but your voice sounds a little staggered" for the first time I was finally able to hear the truth from someone, a stranger and for the 1st time a light went off in my head I replied "No sir, I didn't have a stroke but I do have partial facial paralysis and sometimes it is difficult to speak clearly, I'm sorry if you had a hard time with me today" I felt this sweet peace come over me, I am healing, from the inside out.

Facial paralysis has been by far the most challenging misfortunate obstacle I have had to come to grips with.  I've felt so many times that I just can't do this anymore, begging for relief, for complete physical healing.  I have felt broken, alone, and misunderstood. To finally say aloud to a perfect stranger "I have partial facial paralysis" may seem so insignificant to other people, but for me it was HUGE.  My physicians have been perfectly honest with me.  Right now, there is not much hope for a full recovery without more surgery, which I was told from the beginning.  I like to think I want to hear the full truth, the bottom line, then I can deal with it.  Boy, was I surprised at how much I didn't comprehend my own understanding of what difficulty was?

I have so many people say "...but you're beautiful" for some reason that ".... but" hesitation has penetrated my heart too many times.  I know there is not one person out there that has said those words to me who is comfortable saying it, but I've come to discern they love me and just don't know what to say, and that is OK, I don't know what to say either.  The absolute truth is, my soul, is trying to heal, and it will take some time for me to be ready to accept this new life I have been offered.

Thursday, 11 December 2014

Blessed Abundantly

 

THURSDAY, DECEMBER 11, 2014

Blessed Abundantly

Well, I made it to Cleveland Clinic. Rather than dwell on what was coming up, I focused on more positive thoughts. If you do not have a LIVE HAPPY magazine, I am a Live Happy ambassador and would love to get you one; please send me your address; it costs you nothing, but it will enhance your life tremendously; I love it.

I had a day filled with tests and pre-op appointments. It is freezing here in Cleveland, not what this Arizona girl is used to. Eric flew in last night to be with me for the surgery; I reassured my surgeon I was flying home on Saturday; his PA was a little shocked at my boldness, but I needed to be with my family. One remarkable thing is that I am flying in 1st class, drugged up, and hopefully feel no pain.

So many struggles privately; I would be one of them. However, I don't have that pleasure; my obvious insecurity and self-doubt have been public but have helped me develop in ways I arrogantly didn't think I needed. To those who struggle anxiously and quietly, please know I pray for you daily--it's the least I can do, and I HOPE for some relief from your pain.

Life is so full of difficulties; no one is perfect, and no situation is always ideal, but for me, right now, I am doing all I can to become OK with who I am, what I physically look like to others, and work on my worth as a person, not an object. I love who I am becoming and realize I have much more to work on. The beauty of this life is that we get to start all over again tomorrow with a renewed perspective--and if we don't make it to tomorrow--guess what? There's still HOPE--He will pick up the pieces and carry us through to our new journey.

We all need someone to talk to, someone who really understands. For parts of my life, Sonya and Kris have been my people. Eric, my eternal partner, understands and helps me to achieve my goals with ambition and constant encouragement. Amazingly my little Recker looks into my eyes at times, and I know he realizes and senses my solitude. Yes, I am blessed in abundance.




Friday, 28 November 2014

Brain Scan at Mayo Clinic

 

FRIDAY, NOVEMBER 28, 2014

Brain Scan-Mayo Clinic

I arrived at Mayo Clinic early this morning, and can I just say that the people who drive to work between 7–8 am every day ... I am so sorry. It was stop-and-go the entire way to Mayo Blvd. I will be getting brain scans every three months. All that really is is an MRI, and 45 minutes of pounding and hammering on my brain--I survived. Not my favorite thing to do, but necessary for Dr. Barrs to see what is going on between my ear and my brain ...not much.


Let me explain this, doozie. When I arrived at the hospital, they took me in to prepare me for the scan. Included in the visit is an IV. I warned the nurse not to use anything less than a twenty-two needle and to not use my left arm, wrist, or hand. She smiled and assured me she knew what she was doing. I then announced, "Please listen to me, I know ..." then she plunged the size 20 needle into my left hand, and immediately I concluded, "you just blew out my vein" The nurse then said, "How did you know what size needle to use?"  "This is not my first rodeo. After 5 years of being poked and prodded, I've learned the left side has no veins left. If you had let me finish before you  stuck me, I would have let you know; my experiences have taught me" She then advised me, "Since you've had a port on your right side, you shouldn't use the right side, I'm sure your oncologist has told you not to use the right side for at least 10 years since your lymph nodes were removed?" "Um, no, he has never told me anything like that" "Who is your oncologist?" I looked up just in time to see a familiar face, and she recognized my face, also. I said, "Lindsay, right?" she hugged me, "Yes, how did you remember my name?" "I'm not sure, I just did, but I'm not sure why or who you are." She said, "I was your nurse on the fifth floor when you had your nerve go dead. How are you doing?" "I am fantastic, except for this blown-out vein ...... just here for a brain scan" "Oh dear, I'm sorry about the vein. Let me see if I can get a smaller needle and use the other hand." The previous nurse disappeared, and Lindsay finished. What a great surprise; I love running into the great staff who have served me over the years.

I love Mayo Clinic because they always have my results on the same day. I ate lunch, then met with Dr. Barrs. He is excellent; he always has a big smile and a sweet, compassionate heart. The brain scan results looked good, the cholesteatoma has no regrowth, and there was a little liquid build-up, but nothing for me to worry about. Dr. Barrs talked to me about facial paralysis; he wanted to know how I dealt with it. It's hard to say I'm OK with it; I'm not. Of course, I wish things were different; I explained I am trying to deal with 'being OK' if the nerve does not fuse back together. I added I'm not used to people looking at me and then quickly looking away. I have gotten to the point that I look away now, so they will not have to be uncomfortable. He then looked at me with a big smile and acknowledged that what I felt was expected but that he loved who I was my personality, and my heart. It was a good boost for me. I needed to hear exactly what he had to say.

I will be going to Cleveland Clinic next week for some more surgery on my eye; I think when I get home, I will finish all the other surgeries at Mayo Clinic.

Saturday, 15 November 2014

Trusting

 

SATURDAY, NOVEMBER 15, 2014

Trusting

The worst pain a mother can feel is knowing her children are struggling with something you cannot understand or comfort them.
There have been times when my doubt has been as vast as the ocean, feeling like the waves need to sweep me away, not wanting to face the pain. Our oldest daughter Kayla and her husband Jeremy have two gorgeous boys. Recker is almost 5 years old. It's so hard to believe how fast he is growing.  Ezra will be two in February. He's been a spunky, smiley fun baby boy.  These little angels have brought me more joy than I ever thought imaginable.  Their laughter and unconditional love are contagious.

Ezra's squint eye..so cute

Ezra love

When Recker was 14 months old, he was diagnosed with Autism. He is non-verbal but has taught me to speak with my heart and eyes. The past five years have been so difficult for Kayla and Jeremy. Something I don't even try to understand. All I understand is that if it were not for Recker, I would not have made it through some days when I could barely get out of bed--he is my sweet baby boy, who saved me from going to a very dark place.

Two days ago, Ezra was also diagnosed with Autism. I was so sure he was fine. He was making animal noises, something Recker never did. He could point to the various parts of his body. Again, I don't remember Recker doing that. Over the past few months, Ezra has started to regress. Although Kayla tried her most demanding to prepare us, it could be true. I just didn't want to believe it. Ezra was doing everything differently until he didn't; gradually, he became distant.

Kayla did everything differently with her pregnancy, thinking it might be different. Ezra didn't get his shots like Recker did. She did everything differently--Now we know, his diagnosis is a shock to Eric and me, but not so much to Kayla and Jeremy, who I can honestly say have tried to prepare us for.
Recker School Picture--I love this.

Recker lives in an extraordinary world--I wish I could go
there with him.

When I found out, I just wanted to scream, "WHY?" I still do. I am hurt, angry, sad, and blessed all at the same time. These mixed emotions have rocked my little world and will take a few days, weeks, or months to get used to.  I just want Kayla and Jeremy's dreams of having a typical child to come true. This does not mean they do not love their boys. They love them more than life, but not hearing your child say "mom or dad" is heartbreaking.  They need time to mourn. We all do.

I don't in any way, shape, or form believe these boys are doomed and will not have a future that is anything less than we, as a family, teach them. I know they can and will be, such a blessing to our family and others. In fact, through their journey, they will be the ones who, against the odds, will teach us. Through their sweet spirits, they will guide us so much more about compassion and tolerance than we could ever learn in a book.

So, it leaves me with doubt, fear, and the unknown, but I know one thing for sure, and I can never say this enough, Heavenly Father sends those sweet boys to our family for a purpose.  We may never know what that purpose is but we have decided the reason does not matter as much as making the journey with them memorable and happy.  Autism is not fun. It is misunderstood.  I know so little about why a child is diagnosed with Autism. All I really know is that nothing has changed for me. I love them unconditionally; I will take them by the hand as they lead me and guide me back to where I want to be ... HEAVEN.

Monday, 10 November 2014

Dr. and Mrs. Peter Kreymerman is a DADDY

 

SATURDAY, OCTOBER 3, 2015

Dr.Peter Kreymerman is a DADDY

I drove to Mayo this morning to see Dr. Peter Kreymerman, so looking forward to him telling me I could pick up Recker now and that I could get rid of the BRA ... Instead, I was shocked when a different doctor walked in, mostly because he looked like he was 12 years old ... just kidding I think more like 21 ... maybe!

Dr. Peter Kreymerman and his wife had a baby girl on Friday, November 5th at 4:59 p.m. I'm not sure if I can post her name but she is a healthy 6 lbs. 3 oz. baby girl. I got an email from Heather his assistant, and she sent pictures, however, I would never post pictures without permission from Dr. Kreymerman, but I can tell you that she is beautiful, with lots of dark hair dressed in pink. I am quite certain they are not getting much sleep, but that the baby is getting lots of love and attention. There is nothing like having a brand-new baby. They always bring such a sweet spirit to the home. Congratulations Dr. and Mrs. Kreymerman

Thursday, 6 November 2014

The truth stings

 

THURSDAY, NOVEMBER 6, 2014

The truth stings

 I immediately looked to my left when I walked into Mayo Clinic hospital today. This is where I watched a woman die while the paramedics tried to save her. I remember being jealous, and I wished it had been me. So much has happened since then, I'm not afraid to die, but right now, I'm enjoying my family.

Mayo Clinic "the place."
The nurse came in with Dr. Freeman, asked my name and birth date, and said, "what are we doing for you today?" I replied, "hurting me to take away my pain?" How weird is that statement? They both, not knowing how to respond, said, "where are we going to hurt you today?" laughter "In my hip and lower back" He gives me trigger 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. Dr. Freeman says, "Almost done; I'm sorry it hurts." I haven't seen him since my surgery in the Spring. 
Recovery, drinking my daily routine
I have been staying busy, working at US Airways; I have the best management and supervisor I could request. They really care. I'm working on being Happy, trying to deal privately with it; if my face must stay the way it is right now, will I be OK with that? I don't expect anyone to understand my feelings, but I am sometimes lonely in THAT world. I have researched partial facial paralysis, gone to the library online, and tried to reach out to anyone who has suffered or is dealing now with this--NOTHING--But I understand a little more about what Dr. Barrs 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 Bells 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 nerve from my ankle and replace the dead nerve in my head with a good nerve, hoping it would grow together with the nerves on either side. If this works, we will not see any results for a year, and I will get 30% of the facial movement back. If it does not work, they want to cut along my hairline, pull my face before, take the nerve from the left side of my head, connect it with the one on the right, then wait another year. I don't want to go through that again. Going back and forth to Cleveland Clinic is difficult for me; not getting results or answers is frustrating and want to say "WHY" is sometimes realistic.

Hearing for the first time in 48 years was fantastic; I heard things I'd never heard. Sounds like most people I know take it 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 exciting news, which quickly turned to sadness. Hearing what people say about me hurt me; I knew they would not intentionally hurt me. In fact, none of them knew I could listen to it, and they all were saying it out of love for me--still, the sting of truth hurts. I've been able to get used to going to the store and watching people quickly look away when we make eye contact, 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," and "Have you ever read her blog?" "I don't think her face is ever going to be the same" "She used to have such a beautiful smile" tear 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 to work since that day. 
So proud of Mayo Clinic, this Cancer Center has been in the
works for years, 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 cancers and
can pinpoint to 99.9%  
I am the one who gets to decide what my destiny is, what my life will be, and who I choose to share my light with. I love my coworkers, family, and friends, but I must 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'm taking it slow because, sitting right now, I'm feeling things I've never felt before. My heart has never beat as hard in my chest as when wearing the BAJA. I feel blessed to know the people around me are my friends; they are kind and loving; at least nothing wrong was said--just the truth--the truth I was unprepared to hear. I need to work on myself and my confidence, eliminate 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. My faith and hope over the years have given me the peace and 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 sad thing. I needed a taste of reality. It will take some time to process what He wants me to learn.
The moon is beautiful tonight from my balcony in my bedroom; this picture does
not do justice. It is HUGE, YELLOW and
GORGEOUS
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 for and have been blessed with a good life---music touches my soul and helps me to heal. It's just a more protracted process this time.

Saturday, 1 November 2014

Halloween 2014

 

SATURDAY, NOVEMBER 1, 2014

Halloween 2014

Recker Loves Papa and Pizza

Brian and Kaitlyn--Old Couple--She's pregnant.
How'd that happen?


Brad and Betty Walmart Greeters
Haleigh & Scott

Ezra the Lion

Our First and Last Thanksgiving

 Hey Frenchie- I am so overwhelmed and feel like I have no one I can trust to talk to. You were my one and done, my first and last lover. Th...