Be a Light to those who walk in the Dark.

 

SUNDAY, JUNE 15, 2014

Be a light to those who walk in the dark

Today is Sunday; I wanted to go to the Kirkland Temple or a nearby church. I wanted to take the Sacrament, but today neither one happened. I am watching the conference from my laptop tonight and listening to the Slade Family music and the Sound of Music soundtrack.   My eye is getting worse daily, and I fear losing it altogether. I've been keeping it hydrated and covered with a patch, but when I take it off for some relief--all I see is cloudy...don't be surprised if the spelling on this post is wrong.

This is a little city--white coats everywhere.

I've been praying for a surgery date--tomorrow, I hope something will be accomplished; I'm ready. I want to get home and be with my family--Sundays are the nights we all get together to have dinner and family home evening; oh, how I miss them. Since we've been empty nesters, it's been tough for me; I love my family around--if I had my way, I would have them all move back in with us. I haven't seen my grandchildren in 2 weeks--I haven't seen my children in 2 weeks--Eric and I Skype, so I get to see him, Blake, and Chloe every day... I WANT YOU ALL TO UNDERSTAND THIS:  Eric and I had been planning a trip to Blake's mission in the Dominican Republic; when I was in the hospital, Eric wanted to cancel; when we decided for me to come to Cleveland, I told him he has to go on the trip with Blake no matter what, just cancel my flights. Of course, he was not going to do that. Eric wanted to be with me, but I had a powerful feeling he needed to go and spend some time with his son; Blake will always have those memories to look back on when we are gone. Still, he insisted on being here. I told him if he came here, I would cancel the surgery and go home, which made him think. He knows when I'm serious, so he and Blake left a couple days ago; I've been talking to them every day, thanks to modern technology. Chloe will be working with Dr. Kelly in the Dominican Republic, so this is good dad/son bonding time. I told Blake this morning to have a great time and not worry about me; all Eric and he would be doing is sitting around (just like me) waiting for the scheduler to call. Besides, the time I've had alone has allowed me to reflect, process, and get back on track with the spirit. I have had some life-changing spiritual experiences while fasting and praying for answers.

The two primary sources of most importance are my eye and to see if the bone is infected. I'm not sure about the look, but I feel strongly that my bone is good, with no infection. I do not leave the hotel without a patch on my eye; the wind blows a lot here, and it is excruciating on my eye. It gets really red. I have no peripheral vision out of the right eye. Not a good combination, deaf in the right ear, and can't see out of the right eye--boy, I'm a mess--
  
I thought today, the body is so perfectly created by our Heavenly Father. When something is not working correctly, we take note of it. I never realized how important it is
to be able to blink your eye--or how much people stare when they see someone who is not looking like the typical person should look.  
A little boy was with his dad and said, "Daddy, what's wrong with that lady's eye?" The dad quickly scooped him up, trying to distract the little boy with a flavor of ice cream; he asked his dad again. I looked at the little boy and said, "I have a boo-boo, and I'm just trying to cover it so it won't get worse."
I could see it bothered the boy's father to have me explain it. The little boy said a few minutes later to his dad, "what is wrong with her eye, dad?" No answer. I was trying my hardest not to laugh; I love little children and their ability to say it like they see it, but the father acting like I was an alien was a little bothersome. I waved goodbye to the little boy, and off I went. Seeing out of only one eye when I have the patch on is strange; every step I take is difficult because my brain tells me the curb is closer than it is; I look about as gracious as a bull in a china shop. I have run into walls, stepped on my own feet, dropped or grabbed for things that look closer or further than they really are.

The body is a fantastic creation; when it is not working as intended, all of what you learned must be retrained. My mouth does not work like it used to either (I know most people are happy about that one.) I can only eat tiny bites of things, they need to be cut up, and I can only eat on the left side. Sometimes, it is such a chore. My speech is OK, but hard sometimes to say my "P's and B's"  I have to hold my cheek out while I talk so people can understand. While I Skyped with Eric and Blake this morning, he couldn't understand what I was saying, so I held my cheek out. We laughed about that one. One thing I've learned in the past 5 years is that I am not in charge; Heavenly Father is testing my knowledge of HOPE,  in my ability to listen to the spirit and step forward with FAITH.

I'm still staring at the mirror  15 minutes a day and telling my eyebrow to move, my mouth to smile, and my eye to blink.....guess what? It's working today. I caught my eyelid flashing a couple of times while concentrating on it. When Eric and I first got married, he used to make me stand in front of the mirror and tell myself. "you are beautiful, you will succeed, and you are going to have a great day"  I felt weird doing that, but it worked--I've never met a more positive-thinking person than him.
My face will work again; I know it will--just need to practice a Christlike attribute--patience.

I always despise the beginning of anything, but I'm starting to embrace these changes. I've been told I will never look the same again, well, maybe physically, I won't, but all these changes keep me alive and open to new challenges. So now it's time for one more change: I will survive, and I will go forward no matter what the doctors can or cannot do. I live in a world full of people who feel forgotten; they are not alone; I want to find a way to help them find their happy places, despite whatever trials they face. I have given my heart and soul to HIM and the doctors; I want to be a person who gives more than she takes--listens with my heart--smiles with my eyes--and give back every day I breathe to help someone in need. I did a smile project while I was going through my chemo treatments--

http://monyabonbon.blogspot.com/2010/03/my-smile-experiment.html

I have a new project; I'm in the process now and will tell you about it when I get my results. My focus now is embracing the new Monya--still the same heart and personality; I'm trying to get refined around the edges. I have no doubt that my Heavenly Father knows the strength I have in me; I know when I kneel down for help, he WILL answer back. However, I also know from experience it is not always the answer I want. I've tried all my life to be a humble servant. I've felt healing power in my life and in the lives of others. I have a grateful heart; right now, I feel calm and quiet, and the stillness of what I'm feeling draws me near to HIM. It makes me want to be a better daughter of God by serving others and giving back what I'm learning. Even though I'm far away from home, I know there is someone I can always turn to, and He is just one prayer away. I realize this road ahead of me is long and hard but not devastating--I am concentrating on Happiness in my life--giving and sharing what I know can help others. I am still in this school of learning that we all call LIFE. When I look back at where I've been, I never saw these challenges in my future. I imagined it much worse--I have truly been blessed with a beautiful life, an eternal companion I call Frenchie, 4 exceptional children, and 2 of the best grandchildren who can light up my life with just a smile, I have FAITH in my future, I want to look back on all of this and see that I did what was right when no one was around watching--keeping my eyes on Eternity,  I want to be a light to those who are in the dark, I want to bring them into the light and see what I see--I am the only one who can decide how I live, and I choose to LIVE HAPPY.

Smile with your eyes--

FRIDAY, JUNE 13, 2014

Smile with your eyes--

It's been almost 2 weeks since I've been in Cleveland, getting opinion after opinion. I have finally found the surgeons I feel perfect about. The process they propose will take a few more surgeries than I had anticipated, and I really did have to place a lot of faith in my Heavenly Father to make decisions that will not only help the look of my face but also the newest procedures in medical technology. I asked all the right questions and, most importantly, how often they performed this procedure. The Doctor I chose said he does this every day, with 98.8% satisfactory results with patients. I really liked him, and he explained all the medical procedures in a way I could understand, just like Dr. Kreymerman used to do. In fact, I've spoken with PK several times about my methods and doctors, and he is confident I am in good hands here at the Cleveland Clinic.

I've spent most of my time in a hotel waiting for doctors to call--and you can believe every morning they get a call from me asking if anything has moved closer to a surgery date? Nothing yet.

Yesterday while I was at the Cleveland Cancer Center, I had a panic attack in the waiting area--I was not prepared for it at all. A swift whiff of chemo threw me off--that smell was oh so familiar--there were a lot of sick people all around me--all I wanted to do was hug them, help them, talk to them,  laugh with them, spread some happiness with them--all these emotions raging through my body--I wanted to run, just run away as fast as I could--"Monya Williams" across the loudspeaker shook me out of that odd place I was allowing myself to go.

Routine questions by the nurse--my legs were shaking, I hate sitting still while I have those panic attacks--it's literally impossible, but today I sat and stared out the window at the beautiful trees and floral; it's incredible how the Lord is always there when I need to be shaken up a little and brought back to reality--I can never deny how it makes me feel when I have these moments--I know He heals-I know His love is real-I've seen the truth revealed to me--I've felt the truth of His passion ---I'm proof of His unconditional love-- I've been praying and searching for answers, I know He has to lead me with His hand and by the spirit to this Cleveland Clinic, but at times I'm lonely I wonder if I should be home helping my daughter with two small children, she is having surgery on Monday to have her tonsils taken out---I wish I could make time stand still sometimes--make everything in life perfect, just for a minute or two. I could really use a batch of Recker and Ezra right now--if I could, I would ask our Heavenly Father to let time stand still just for time enough to go to each and every person who has touched my life and spread happiness in my life--I have seen so many of my friends of all religious believes come together and unite as one, as we stand together our cause is more significant than we will ever know--we are not just living in a weak world, we have so many around us that do know right from wrong and are strong in their convictions--I WILL always choose His way, in a world where there are so many who will not follow our Heavenly Father, I. Many friends have made private commitments that we WILL stand for truth and righteousness.

Now it's time for me to meet a new doctor, another surgeon on my team who will be helping during the surgery--I really liked him; he was animated and excited as he gave me his rundown of what he thought was best for my individual situation--halfway through his explanation he lost me with his medical jargon I asked him to slow down and explain it in "blonde" terms. He smiled and reviewed every option; he also typed it out and gave me a copy to process it. Basically, this is what we discussed. I have no proper ear function and a large mastoid bowl with a fibrous base.

The ear is a significant emergency that needs to be taken care of asap; however, believe it or not, my eye is the most critical issue right now--I am in jeopardy of losing my cornea and having to get a cornea transplant. He will put a gold weight in the eyelid, allowing me to blink when my brain says it needs to. However, there will be some training and re-hab on my part.

There is significant concern about the boney loss in the mastoids that have been removed; this will need some bone resection.

All surgeons agree that a sural nerve jump graft is necessary if an excellent frontal nerve stump can be found. In English--- if there is a good nerve they can use, they will do a nerve graft from one side of the face (left) to the right side. It's best to not let this wait because of progressive osteomyelitis changes. If this is the case, they recommend a more straightforward reconstruction 1st, which most likely could be done with an SCM (google that) flap and skin graft. If this fails, I can get a radial artery-free flap. He explained all the risks and benefits and was able to answer all my questions.

He agrees with the other doctors involved this needs to be done asap; however, trying to get this many doctors' schedules in sync is difficult; all are willing to cancel a day on their clinic schedule but finding an OR for 12 hours is going to be hard.....and so I wait. He thinks it could be possible in the next couple of weeks, and the symmetry of the mouth and eyelid will be later. Basically, the surgery and healing will take over a year.  

My speech is difficult to understand; it's slurred on some pronunciations; I will have to learn to train my brain again...every day, I look in the mirror and say in my head, "move, I know you can do it, just move" to my eyelid" then again, I do this with my mouth. I try to eat on that side, too; it is challenging. I want to work those muscles.  

I'm having a hard time dealing with the looks I get from people; I understand why they look. When I smile, it is entirely crooked, today a group of kids were with their teachers at Barnes and Noble, and one of the kids looked at me and said, "what's wrong with that lady's face?" the teacher said, "she's smiling at you with her eyes" I walked into the bathroom stall, cried a little then realized ..... I always smile with my heart at Recker, my grandson, who has non-verbal autism. So many times, he stares at me with his eyes; I know we are communicating. I am going to start a happy, positive thoughts and actions experiment--if anyone wants to do it with me, let me know; I have an idea...I had some tears today, but through it all, I know I am where I should be right now, and it sounds like it's going to be at least a month.

Another Day at Cleveland Clinic

 

MONDAY, JUNE 9, 2014

Another Day at the Cleveland Clinic

This morning, I called the doctor's office. As soon as they opened, I was greeted, already aware of my situation. She said Dr. Bernard is working on getting this on the surgery schedule; bringing three doctors in on the surgery is more complicated than it sounds. I received a call to see another doctor on Thursday. In the earliest time frame, I will have surgery on Tuesday--one more week here. This hotel is not cheap; it is most convenient if the hospital or doctors' offices call. It takes me 5 minutes to get there without going outside. Walking through the hotel and hospital, I see doctors in white coats--they are everywhere.

It is a bright sunny day today, and I want to get out for some fresh air. I do not have a car; I just stayed at the hotel waiting for a doctor to call and say, "surgery time" Today, I was a little disappointed wanting to get this over with; my anxiety level is on high alert.

I spoke with Kathleen from Dr. Barr's office to update her on what is happening here--she was so sweet and reassured me that she and Dr. Barrs only want the best care for me; I let her know I have been praying, friends and family are praying, and I feel good right now about being at the Cleveland Clinic.   She wished me luck and told me to let them know what is happening. That phone call was hard for me. I never want to offend or hurt anyone else's feelings, and I feel that getting a 2nd, 3rd, or 4th opinion like I have has got to at least make Dr. Barr feels terrible, which makes me sad. However, the most important outcome for me is the doctor who can give me the best results for a long-lasting look; every doctor I have spoken to has told me the process Dr. Barr wants to do is not the best option; it is an excellent solution for someone who is 80 or older, it's a temporary fix. This process we are trying to organize here in Cleveland is much more advanced and will give better results in the long run--it will mean more surgeries, but when it's all said and done, it will be a better option for me.

Today--no surgery date yet --- more sitting in the hotel waiting--tomorrow I will call the office again. Hopefully, answers will come tomorrow. Tonight, my legs are hurting; it will be a restless night.

Promises not broken

 

SUNDAY, JUNE 8, 2014

Promises not broken

I know without any doubt one day, I will be strong enough to believe in this promise. Right now, I am feeling vulnerable. I am so afraid I have spent a week in Cleveland trying to find a doctor who will take on my case, one which I was told by two doctors they have never seen during their time as practicing doctors. I am fine-tuned, and my sharp edges are being sanded down. Heaven has shown me so many miracles....and one thing I know for sure is the Lord will not take our pain away; I also believe he could take it away, but when he does that, we are deprived of blessings we would have never had the opportunity to endure, come closer to the spirit and strengthen our testimony of FAITH and HOPE in Christ.  

One day a few weeks ago, I let Recker and Ezra play in my car while I was cleaning it out; they love to just play in the car because when he drives, they have to be in their car seats, so when bonbon lets them play they are all happy and smiles. The next day I was going, and I noticed both Recker and Ezra's feet and hand prints on the windows; I pulled my car over to the side of the road and stared at those prints with the biggest smile on my face--thinking, "I want to absorb this moment, those little hand prints are my cute little grandkids...." why did they not look as cute when they were my own children's? Or maybe they were, but I just forgot. I later noticed in my house on one of the mirrors Recker's hand prints all over it; I did not take the Windex out--instead, I cleaned around it; this little boy has blessed my life more than anyone ever has--I love Ezra too, and I love him just as much, but the connection I have with Ezra is different than the one I have with Recker. Last week when I was home, I had the PICC line in my arm and a wrap around my ear, like a bandaid. Recker always comes and hugs me, but this time he gave me a hug, and then I had to inspect my PICC line. I tried to explain that it was a boo boo, and bonbon needed some medicine. Then he hugged me again and looked at the bandaid on my ear. He first looked at it, then looked me straight in the eye, as if to say, "it will only hurt for a minute," and that fast he had ripped it off my ear and ran as fast he could---NO, it didn't hurt, he just hates bandaids and obviously if he doesn't like them he assumed bonbon wouldn't either. This little Recker boy is 4 and a half, he is still non-verbal, but he and I can communicate with our eyes and hearts. He has a special bond with our Heavenly Father, and I treat him as though he is a typical child because we do not want him to think we think he is less worthy or less loved than anyone else in this family. 

He's my little angel.

I know that one day we will understand why some children are born with this particular veil surrounding them and protect them from the world's temptations. When I look at this picture above, it always makes me think of Recker; I believe his footprints will also be next to mine, his perfect little prints walking next to me and helping me get where I need to be.

Tomorrow is a big day for me; I am praying the doctor has already cleared his schedule for one day and can get me in asap; if not, then I will be carried once again on an airplane to my next doctor on the list hoping for an answer. I have an excellent feeling about the Cleveland Clinic, and I know they have already told me my situation is an emergency case. I realized a long time ago my life would never be the same; it would never be 6 days of exercise for 2-3 hours a day, riding a bike 150 miles a week, lifting weights twice a week, and doing kickboxing 3 times a week...I never thought I could give those things up because they had become such a big part of my life; now I realize my Heavenly Father has a specific plan for me, I'm still not sure what it is, but I want to be the instrument He expects me to be. The way I will accomplish whatever it is, I need to get my body healthy again, and I will. I always seem to forge forward, and I can do it with the FAITH, HOPE, AND PRAYERS of all my friends and family. Without them, I would not be able to accomplish any of my goals; I don't ever want to let people down or be less than I know I can be; that's just who I am. Because my life has been spared so many times, it tells me I have more to learn. I truly believe everything happens for a reason; Heavenly Father is not just going to throw us out to the lions and not have a plan for us--still, there are times when I  feel like there is nothing I can do but rely on Him, friends and family to pray for me. I agreed to come to earth and take a body, and that earth life would be a difficult task at times; I believe when Heavenly Father sees our pain, it must hurt him because He can take it all away; however, if he does that we will not grow and learn and share with others. My prayer tonight is to help me sleep, even if I cry. I will wake up in the morning preparing for a good plan from my doctors. Tomorrow will be a good day, one day closer to feeling the sunshine on my face again.

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It's Not My Time to Go

FRIDAY, JUNE 6, 2014

It's not my time to go

I was hoping to get my PICC line taken out today--NO SUCH LUCK--All the Cleveland Clinic doctors I see are out of town for a convention. It was also a suggestion that I keep it in until my surgery. I think I've finally made some decisions after talking to a few doctors; the proposal Dr. Barrs gave me is reasonable. However, three doctors have told me that taking muscle from my tongue is a temporary fix, and if I was an 80-year-old woman, they might consider that option. What they have seen work the best with someone with a dead nerve, like I do, is to take a nerve from my leg because it is the nerve that best replicates the nerve in my face. This can only be done if they find good nerves to work with in my ear. If there are no good nerves, they will take a muscle from my arm and connect it, close off the right ear completely with some tissue from my arm and bring in 2 other doctors who will help assist with this process. The plastic part of this surgery could be 6 months or more.

When the ENT vacuumed out my ear and cleaned it up a little, he said the inner ear looked good. All he needed to do was clear a place in his schedule, which I will not know about until Monday. This was good news; however, I am still cautious with my emotions; getting let down is so hard on me. He reassured me that my face would not stay the way it is right now, drooping on the right side. He said there is so much that can be done with technology today.

Right now, my head is in overdrive, trying to keep up with my health. Sometimes I feel myself slipping; I need the Lord by my side. I must get constant reassurance from the Lord that I am doing what is best for me--I live by every word and every answer I get from the Lord. I just need Him to let me know that I can do this. I would love to hear him say, "your faith is bigger than your fear, and you can handle this" Do you know how many times I have asked for the same things in the past 5 years? I have made choices that led me to nowhere, but I had to find out myself when I arrived where I thought I was supposed to be; it was a closed door--then I would have to get back on my knees and ask again for the Lord to actually take my hand and lead me to where I was supposed to be. He sees the way I'm supposed to go. If He would just take my hand and lead me there, I know I would be protected and safe, and I would know exactly what to do. This time it is different. I'm struggling, I sometimes wonder if I've been forgotten, and I sometimes wonder if I am even being listened to, it seems like the words are going to Heaven, but the door is shut. Sometimes I must be told NO to understand the YES, and to realize my Heavenly Father says NO because he has a better plan for me. It's just so hard sometimes to recognize the blessings that come in disguise;; I have seen so many miracles happen in my life--I had a very spiritual experience happen while I was in the hospital, and I don't feel comfortable sharing it right now, I shared it with my family the night before I came here to Cleveland.

All I know is that right now, it is not my time to go to Heaven...the Lord has work for me to do here on earth, which is why not getting clear answers is so tricky. I have no doubt He loves me and always will, through the good and the bad. Fear gives me to doubt sometimes then I learn that the doubt is because of my fear--I felt like I was finally in a good place in my life. I have studied the Lord's love for all His children, and it is hard to comprehend; I guess the only way to come close to understanding unconditional love is to have a child of your own. Never in a million years would I have imagined or thought I would be sitting in a hotel at 1:00 am across the street from a hospital, wondering if the Lord was listening to me. Does He know I need these answers? In this early morning hour, I am sitting in a bubble bath wondering if I have been abandoned by Heaven--realistically, I know that is not true--many people are praying for me--I have prayed for me, I've prayed for Him to take me on His wings and take me away like I can't do this anymore, I just want His sweet peace to pour over me and heal my soul,  I wish I could physically have His arms wrapped around me, give me some warmth, I want to go to the place where He can heal me, he's done it with other people, I need his mercy and grace to take me away, lead me to that place where I can feel no pain, no decision making.

Why can't my life ever just be every day? I have praised Him for every miracle that has come to me, I have given all I have to the Lord, and He has lifted me to higher ground and allowed me to see miracles happen--for some reason it is not happening as fast as I need it to--have I not done enough to be worthy of this request--I put my face in a pillow and screamed as loud as I could tonight--what am I doing or not doing to get the answers I need?

LABELS: CANCER, CLEVELAND CLINIC, DR BARRS, DR. BERNARD, DR. FRITZ, MIRACLES, PRAYER 

Cleveland Clinic Day 1

 

TUESDAY, JUNE 3, 2014

Cleveland Clinic Day 1

This is the picture Dr. Barrs took during surgery--the greyish is the graft he did, and it died within 5 days.

Today I spent  4 hours with a specialized doctor at Cleveland Clinic. I was highly impressed with his bedside manner and credentials; however, he had not received any of my reports from the Mayo Clinic. I got them and actually faxed them and emailed them ..... they had nothing, none of my films, path reports, lab report, OR notes--we spent, luckily I had copies of it all with me, but it really was frustrating to have to tell the story all over again and again--The doctor's PA came in to discuss why I was there--she looked at me and didn't seem to have much compassionate--for some reason, I was so frustrated trying to get all my paperwork in order--she said the receptionist who usually brings these referral patients paperwork to them to study before the patient gets there was out of the office, so they had not read anything or seen any pictures from my surgery---I told Diana, I was worried this would happen.

I sat telling my story--the long story of my ear--from the blow to the ear when I was 3 to the current status. I felt like she was looking at me but not listening--it felt like she had no connection with what I was telling her. She left the room to talk to the doctor, and soon he came in, and again I had to tell the story as he typed it into his computer. He seemed concerned for me and could obviously see my face was affected. He made all the routine checkpoints to see the damage to the nerve. Then he explained that the ear needs to have a complete debridement of the ear cavity and canal. He said he could not and would not touch any facial nerve surgery until the ear was clear of all infection and was healed. He explained, and I have agreed with this all along, and so has Eric.....no plastics doctor should be going in during ENT surgery to repair the facial nerves. When he read the reports from Mayo, he was very complimentary of all the doctors I have seen. He mentioned Dr. Kreymerman and Heather and said he likes both of them very much. Dr. Kreymerman trained here at the Cleveland Clinic. It was nice to have a doctor with a connection to some of my doctors at Mayo; for me, it's reassuring. He agrees with Dr. Barrs about the window of opportunity to get any nerve damage a possibility of repairing. However, does not necessarily agree with taking the mussel from my tongue.

I have until April 2014 to have all my healing done from my ear before he can touch anything else. He explained how the process works. Basically, he made an appointment for me on Thursday with an ENT here in Cleveland, then Neurology needs to be involved because of the skull involvement. We asked to see a doctor I was told about that is an ENT--he left the room to get those organized, and I sat in the window seal of his office looking out into the beautiful green trees and grassy area. It was surreal to me. It takes a lot of energy to keep my mind focused on the HAPPINESS I have in my life. I have so much to be grateful for. This place feels right; I know I should be here. I know one of these doctors can help. My eyes started to bubble up with tears as they trickled down my cheeks, finally landing on my arm. I was a mess, and I said to myself, "how did I get here? Why am I here?" (not in Cleveland, but in my life) The doctor came in, and we chatted about my favorite doctor Doctor, Peter Kreymerman, and his PA, Heather Lucas--he said PK is a great man (I've said that for 5 years now, and Heather said he is sweet and compassionate, and an excellent resource for me. He then did a quick assessment of my ear, the routine facial tests, like raising our eyebrow, smiling, etc...he mumbled to himself, "yeah, there is nothing animated about this right side."  He then explained he could not do what I needed to be done on my facial paralysis until I got the ear healed, also that I would have several surgeries to fix my face. I cried; I never call in front of my doctors; I suck it up and do what they say to do. This time, I'm exhausted and starting to feel the burden of this all; my shoulders are heavy with responsibility. I'm glad Diana was there; with her nursing background, she got all the answers to questions I would have never known to ask--one of them is that after the debris is cleaned out and healed, instead of taking a mussel from my tongue (which in his words is old school and does not bring animation back into the face, he takes the mussel from my inner thigh) or another procedure could be to take a nerve from the left side of my face and pull it over the right side, and hope for it to connect.

Within a few minutes, his PA came back in the room and told me she was able to make an appointment with this doctor who specializes in my issues; she said she would try to get me squeezed in tomorrow, but for sure, I have an appointment with him on Thursday, neurology will also be on my itinerary. I began to cry again, Diana teared up, and the PA had nothing to say, but she, too, teared up. I left there feeling like this was a waste of my time; Diana felt very hopeful and even told me the differences between what I heard at Mayo "your right side of your face will never look the same as the left, and you and Eric need to get used to it) Is that this doctor today gave me some HOPE. I'm exhausted and need a good night's sleep; my mind has continually been on this ear problem, and I have no time to think of anything else. Still praying for a miracle.

Just Dream-Just Breath

 

MONDAY, JUNE 2, 2014

Just Dream--Just Breathe

I'm uncovering some strength I've never felt before.  My fears are finally subsiding, and I'm allowing myself to feel vulnerable--Today, I boarded a flight at 5:25 am to face either a storm or tender mercy.

Yesterday, I pleaded with friends and family to join united in prayer and fast for some relief, some answers to come clearly and quickly.  The spirit has a way of sneaking in and penetrating my heart when I am not expecting it.  I could not help but have the peaceful feeling of our Heavenly Father watching over me and listening to every prayer. I know through Him I will be able to endure; I am strong. I would not be true to myself if I did anything but face this storm and still stand as it passes.  For the first time in 5 months, I am allowing myself to breathe and dream again.  I realize this is my journey, life, and story, and I am still writing.  I wish I could go to each person who prayed and prays for me daily--this is what I would say to you--HE LISTENS, AND HE ANSWERS PRAYERS--I LOVE YOU FOR JOINING IN OUR FAMILY PRAYERS.

 It's been so hard to stay strong. This is a feeling I have not felt in such a long time.  Even when I was diagnosed with the VILLAIN, I felt more in control than I do now.  So many times, I have tried to bury my fears, thinking if no one could see my vulnerability, I wouldn't have to feel it if I just ran from it. However, those shadows followed me to where I am now.

Today I've decided it's not about the race or how fast I can go; it's about finding out what's inside of me, who I can become--taking chances and staying strong. Tomorrow, I have a chance to see a great doctor; I'm taking this opportunity with the attitude, "I deserve this. I deserve to know if there are any other options for me" I'm not one to want to hurt feelings or make any of my doctors think they are anything but great for my prognosis.  However, a great physician friend recently told me. Also, he said, "You always say you want to live with NO REGRETS. Do you believe this will be a regret if you don't take it?" I knew the answer before he finished the sentence..." yes, I would regret it" "besides,  any doctor who is upset because you decide to get a 2nd opinion or 20th opinion does not deserve to be your doctor"  I'm not sure if I agree with that last portion, I have been so blessed to have the BEST team of doctors on my side, cheering for me all along the way.  I love my doctors at Mayo Clinic, but when one tells me that my face will not change. It will be this way for the rest of my life. I have a lot of years left in me. I must believe with all the modern technology, there must be a doctor out there who can help, that doctor may not be at the Mayo Clinic in Arizona or even at the Cleveland Clinic, but I know myself well enough to know if I don't take this chance, I will regret it.  It's time for me to start dreaming and breathing again. I feel this fire inside me that needs to be ignited---but I'm not sure how to get it fired up again--I believe this trip to Cleveland Clinic is a good decision--now on to the next step--Meeting 'Doctor Right.'

So, I am looking at tomorrow as a gift, and I will embrace it; I have no fear going into this appointment tomorrow. Every step I take and every storm I endure makes me stronger.  It's time for me to spread my wings and start flying--I know I was not sent to this earth to hide behind every corner, afraid to face my fears; I was meant to embrace the future and teach others how to do the same.  I trust my Heavenly Father's plan and know His arms are around me. He will give me the calm I need for tomorrow.  On the nights like this, when I am trying to sleep and can't, I turn it over to the Lord and ask Him to take this burden once more from my shoulders and allow me to sleep, allow me to rise in the morning, grateful to Him, and say "All I have is yours, all I have is because of your grace and tenderness you have shown me throughout my life"  Now, I will sleep, but not before I say a prayer thanking my Heavenly Father for all the blessings He has bestowed upon me in my lifetime, helping me to see the love and faith of friends and family.