Monday, September 28, 2015
Oh how I laughed when I saw this. This reminded me of the best road trips of my life. I'm reminded of going and visiting Jodi while she lived in Cali. But more than anything, me and Jodi and suzi on road trips. Didn't matter where we were going, we just loved road trips. Or me and my friends or roommates taking middle of the night trips in college from buy to Arizona. Wherever we went, traveling was most the fun. It was where I first learned joy in the journey, not the destination. Love my friends.
The longer I live, the more I realize this is the truth. Luckily, I do have some amazing blood relatives that I love and adore. But I also have so many family members that are not blood related. That love me and have become family to me because they chose to. Because they want to be with me. Because they have given their heart to me. They have chosen to care and love me and be there for me. I'm so thankful for my family that has stood beside me. Those that did because we are related and those that chose to walk in and hold my hand and be there because they just simply care and love me. I'm so grateful for my family --- all of my family. My support system. Those that lift me up and strengthen me. And hold my hand when life is just too hard. I've been so blessed with earthly and heavenly angels. So very blessed.
Lately, it has been hard to just keep going. The trial has kicked me down hard. Giving up and giving in felt like an easier solution. Between medication changes, an intestinal blockage, surgery, multiple tests in the hospital, and more pain than I can bear, I have felt at the end of my rope. But, quitting isn't an option. At all. I have to keep going. But how?
As I was scrolling thru Facebook, I heard this song. I found myself listening to it over and over and over again. As I listened to it, I found my fight. My will to keep going.
The words spoke to my heart.
This is my fight song
Take back my life song
Prove I'm alright song
My power's turned on
Starting right now I'll be strong
I'll play my fight song
And I don't really care if anyone else believes
Cause I still got a lot of fight left in me.
This spoke perfectly to my heart. As I listened, I cried and sobbed. It is so hard to fight this day in and day out. I fight an invisible disease. I fight a disease no one understands. There are days I look fine although I can hardly move. It breaks my heart when those close to me don't understand. I fight my hardest. If I had cancer or ALS, others would understand. But with autonomic neuropathy, peripheral neuropathy, small fiber neuropathy, and multiple other diagnosis' and paralysis of the esphogus and intestines, I fight each day. Most don't understand. Even with me in autonomic failure.
These new genetic tests and hospital tests may give me a more definitive diagnosis that others Understand. But I am grateful that my husband and son and doctors and sister and close supporters do understand. I'm grateful for those that stand close to me. They have helped me to find my fight song and stand and fight.
Most of all, my Savior, fights with me. When I feel I can't fight for myself anymore, he fights for me.
And starting now, I will be alright and take back my life. Because I still have a lot of fight left in me.
This is what my Instagram feed looks like. One quote after the next. Sure there are some friends but I follow all the quotes and conference and general authorities. These remind me to keep going. To follow the prophet and keep the Savior always close. These are some of my favorites.
One of the scariest moments....
A couple of weeks ago, I asked Hayden to let the dogs in and warned him I felt like I was going to pass out. I was safe and in bed....he needn't worry. As he let the dogs in, he sneezed. A bloody nose started. I was so weak and light headed. He yelled for me and told me it want normal but squirting everywhere. All over. I rushed to him. Our bathroom looked like a crime scene. I pinched his nose as he stood over the toilet for 15 minutes or so. I called lisa as I felt like I was going down. She wasn't home.
I called Chad. He rushed down. He told me to sit while he helped Hayden to the sink and tried to get it to stop. I called Thomas and told him to rush home as Hayden was getting sick from the blood loss. It had now been over a half an hour and it was gushing. Was getting nervous. This had never happened to Hayden before. When Thomas got home, Hayden had been bleeding for almost an hour and it wasn't slowing down. Thomas applied more ice and pressure as Chad and I had done. Finally, Thomas got it to slow enough but when he let go of his pressure points, the bleeding rushed again. Thomas took Hayden to urgent care to get his nose cauterized. It was an allergic reaction to an antibiotic. (amoxicillin). Poor boy. He lost so much blood.
I tell this for several reasons:
1) recording history
2) to record the lord's hand in our lives. I was given strength and my passing out had stopped. I was given extra help until help arrived. Chad was home, awake, answered and rushed over to help. Thomas was able to leave work. They figured out the allergic reaction. And he bleeding stopped without cauterization.
I'm in awe of how much I (we) are watched out for. Hayden was weak after but was able to regain his severe blood loss and hold on until his dad could get him help. Our Savior gives us what we need. He watches out for us. He loves us. He is in the details of our lives. Each and every day and always.
As Thomas rushed Hayden to urgent care, Chad stayed with me as I was so weak. I'm so grateful for loved ones that care for us. That love us and help us. I'm grateful I wasn't alone after I had stood for so long. I felt safe with Chad here. Our loving Savior took care of Hayden and me.
Suzi and Hayden took me to what was supposed to be a 15 minute doctor appointment. Hours later, I came out. Poor Hayden. He had finished his homework and listened to an entire book on cd. And he was absolutely starving to death.
I told him we could go anywhere. I meant Burger King or McDonald's. He threw out oregano's. I was exhausted and working out and miserable from more neurological exams and tests. But felt awful that he and suzi sat in the car for several hours. So I agreed as long as he ordered off the quick lunch menu.
That night he told his dad all about our adventures. He loves life. With me not getting out often, a visit to a restaurant and getting dessert is a real treat. He was in heaven and kept thinking it was the greatest adventure we had had in a long time.
I wish I could do this more often but cherish the moments we get to have adventures. And with an oregano's opening by our house, we may be in trouble. I think he may be willing to pass up the actual food but that pzookie. He is in love with it. Best dessert ever according to him. I love this smile. I'm so grateful he appreciates everything.
Hayden - YOU ARE MY EINSTEIN!!!
Every time I read this quote I think of you. You so often judge your ability to climb a tree with your self worth. My son, you are an eagle. You were born to fly. And I see you working your wings and building strength. So. Stay true to who you are. Be you. No one else. And my son, I can't wait to see your soar. Your will soar to beautiful heights.
Oh how I love this quote. Oh how I needed to see this. I need to plaster this next to me.
As I ran across this quote, my little heart testified of the truth of these profound words.
Life is hard. It is supposed to be. The plan was to try us in all things. Not in some things. Not in the easy things or the bearable things. But all things.
So often, too often, I find myself valuing myself or my worth on the options of others. Why? Those that are the closest to me, cherish me.
Thru many priesthood blessings, I have had the privilege and blessing to hear directly from my Father in Heaven, how HE feels about me. What good I do. What qualities of mine he appreciates. How he is pleased with me. How he knows of my faith and trials and that the path I walk is difficult. That I am precious and beloved and known by my loving Father in Heaven. He reassures me I am his.
So why then does it effect me so badly when those I want love from or help from ignore me? What does it hurt when they do not see my value or worth? Why does it tear at my heart when they are unable to see me for who I am? Why is their love and acceptance so critical to me valuing myself?
I think we all experience these moments.
How many people really see us. Know us. Even those around us don't see what happens day and night. They see small glimpses. Momentary examples and then create the rest. Yes, we get judged. Our job is to rise above it and listen to how God, our loving Father feels about us. To take what he sees in us and magnify it. To truly become his.
If God himself values us. Which he does. What does it matter what a human thinks? God sees all. He knows us. He knows us better than anyone. And if we have his love, if he values us, if he believes we are valuable and precious. What else matters?
I'm going to spend more time focused on those that do value me and love me. And quit allowing those that are blind to who I am, control how I feel about myself. I'm not perfect. I have many weaknesses. I have my struggles. But I am a cherished child of God. I am his daughter. He loves me. He thinks I am enough. He sees the good in me.
I have a loving husband that I am so blessed that sees the good in all. He cherishes me. He loves me. He thinks I have great value. I have a son that adores his momma. He loves me. His is my friend. He values me. I have such an amazing support system. They love me and value me and cherish me. And I all of them.
So today, I will choose to value myself. I will choose to see the good in me and make that good help others. Today I choose to not allow those who do not really see me to determine my value. But to focus on all those amazing people that my loving Father in heaven has placed in my,life. Because honestly, I am surrounded and valued by some pretty amazing people.
The puppies beg for food always. Max simply stares longingly in your eyes. Maya lets Max do the begging. Olivia jumps all over and tries to dump your plate. These dogs are spoiled rotten. Simply spoiled. But we love them. I'm definitely the biggest sucker followed by Thomas. Hayden doesn't give in. Although julie and suzi both are as bad as me. Spoiled puppies.
Lately, as my life has been filled with surgery and hospital visits and medication changes, I have spent even more time in bed. Lots of time dealing with horrific side effects.
Because of this, I'm even worse at canceling plans. And of not being able to commit to anything at all. So many think it is me not wanting to or not pushing myself enough or being lazy.
That is not he case. I am in so much excruciating pain. I'm struggling to lift my head from the bed. I sleep. I sleep more. I toss. I turn. Thomas says I cry in my sleep. I move to the recliner. I move to the couch. I come back to bed. I sit outside. I move. I apply pain creams and essential oils and try to ease the pain. I struggle with sleep. I fight to keep going.
So when I cancel and change plans or am hesitant to commit, it is simply out of my control. There are days I really miss my old life.
I would love to wake up and know I could take a shower and wash my hair and blow it dry and still leave the house. I am in awe of what I used to do. Now, I must take a nap before I bathe. Then sleep sometimes before getting dressed. I fall into bed. I struggle for hours to regain my stamina from bathing. Then I can brush my hair. It air dries. I cannot hold, a blow dryer. There is no possible way I can round brush it. There is no way I can leav the house after I shower and do my hair. And no possible way to put on make up. That used to be every morning without any thought. Just routine. Now, it's all I can do.
Everything is a struggle and a choice. Do I wash my hair or walk to the couch? Do I make myself a snack or read with Hayden. Most days I only eat if someone brings me food. I can't stand long enough to make anything. Lately, I've been too sick to even get yogurt from the fridge.
So when I cancel plans or say I can't. It isn't personal. It isn't that I don't want to,go or have fun. It is simply impossible. I am so grateful for those that understand. So grateful for the love and understanding or Hayden and Thomas. And those closest to me. So so very grateful.
My favorite part of women's conference. The words spoken when I heard. As we stand before Christ and we rememeber and we see what lays before us and we ask "is this all that was required of me?" I have thought about that so often. The blessings from this trial outweigh the heartache and pain. If I see that now, I can only imagine how I will feel when I am standing with my Savior again. What am I willing to suffer and do to stand with my Savior and be welcomed into His presence? There is nothing I wouldn't do. There is nothing in this world that I could experience that would keep me from my Savior. And although my trials seem hard some days. I know it's worth it. It is worn it today. Every time I listen to him and follow him, he blesses me more. As I walk in faith, he blesses me more. As I do his will, I am given more help. More blessings. More promises. More tender mercies. More love. More peace. More.
Today, even as I walk these trials, it is so worth it.
I can only imagine as I stand with my Savior, and this mortal life is over, and the veil is lifted, and I rememeber all. I know my knees with, bow. I will confess that our Savior is Jesus Christ. I will utter the words, " for all this, for all you have given me, for all I have gained, is that all that was required of me?"
My sweet nephew, Dallin, received his mission call. They had everyone over, hundreds of people, to open his call. He was called to serve in the Kansas Whitchita mission, Spanish speaking. He reports to the MTC in Mexico on Jan 20, 2016.
My dad's dad, my grandpa Lester Bud Simonton and his eleven siblings were from there. He moved with a brother to Florida where he met my grandma, Alma Elizabeth Thornton, and they got married. The rest of the Simonton's stayed back in Kansas. So, it will be fun for Dallin to teach some of his relatives.
I'm grateful for Dallin. I am grateful for all the ways that he is an example for the younger ones.
I cherish Dallin. When he was 5 years old, my Hayden sat in NIcU, he was struggling to breathe. Christmas Eve was a rough day. Very very rough day. Hayden wasn't doing well. He was so sick and struggling to stabilize. They told us to expect the worst. Christmas Eve night, Dallin prayed for Hayden. Two things he was worried about. 1) he prayed that Santa could find Hayden in the hospital. And 2) he prayed that Jesus would heal Hayden. He even said he would give up all his presents if Jesus would heal Hayden for Christmas. I was so touched.
Imagine my surprise when I woke up on Christmas morning and Hayden was breathing on his own. Something we were told not to hope for for months, if at all. We received our Christmas miracle. I know the Savior heard all of our prayers. But I know that our precious Savior heard a five year old boys prayer that he was willing to give up his gifts for his cousin to be healed. Sheer sacrifice. Sheer love.
Also, Santa and Mrs Claus and his elves came to visit Hayden in the hospital. Both of Dallin's wishes came true. We received our own Christmas miracle.
I know Dallin will be a fabulous missionary and bless the lives of many. I love you, Dallin and so proud of who you are.
The pain has been so intense lately. I try not to say much. I try to endure. But some days are so incredibly hard. The pain is more than I can possibly bear. In those moments, I try all I can to ease the pain. I wear wrist, knee and ankle wraps. I use essential oils and Epsom salt baths. I try to breathe and I definitely pray for relief.
I have witnessed first hand how trials and pain and surfer ring are used to teach us and refine us. As we allow our Savior to work in our lives, we can become better and the trials and pains will make us greater.
The trials I have walked have been difficult. They have pushed me to the absolutely end. There are moments I felt I couldn't do it any more. I felt like I couldn't keep going.
However, I now see the blessings. I see the great strength that has come. I see how my Savior has tutored me. He has strengthened me. He has made me what I could have never become without these trials. It has made me who I am. I see clearly his hand in my life. I see his strength. I love and cherish him.
I have been blessed to realize that bad days, no matter how painful or how awful, that they do come to an end. Faith always triumphs and our Savior always keeps his promises. This is I know! This I have witnessed. I testify of his greatness and his goodness. I am so very in awe of his goodness and love.
I am in awe of my Savior. I am in awe of what he can do when it seems like there are no options. I've felt his undeniable love. I have seen him heal my body when it could no longer live. There are moments when I can no longer breathe and air will not come. Then, my Savior allows breath back into my body and allows me to keep living. I e seen my Savior turn cupcakes into money and garage sale items bring more money than it should. I've been blessed with our food supply not dwindling even though we continued to eat it. The miracles we have experienced have been beyond what I could scarcely imagine. My Savior. Our Savior. Is so good to us. I love him dearly.
Watching Thomas and Hayden work on projects together brings me huge amounts of joy. Whether they work on model cars, Star Wars aluminum models, Legos, working in the yard or cleaning the garage. I absolutely love them and their great relationship. I hope Hayden realizes how lucky he is to have his dad as his best friend.
Thomas is a fun dad, husband and even playmate to the puppies. He is crazy. The dogs love when Thomas comes home. He plays with them. He teases them. He loves them and they absolutely adore him. Everyone that Thomas meets absolutely adores and loves him. He is such a great and fun guy. Our world is so much better because of him.
Hayden absolutely rocked the last court of honor. He received three rank advancements and 17 merit badges. He has worked so hard at scouts and is doing great.
What was a total surprise to us was they started talking about a scout that was a miracle scout. He worked hard and overcame issues. He was alwYs positive. He includes everyone. He works so hard.
Brother turkey then said that they give a special award, scout of the year. Hayden is the recipient. I was shocked. I had no idea he was receiving it. I am so proud of him. The kind things they said about Hayden were all true. He is absolutely an amazing scout and wonderful son. He is absolutely amazing.
Hayden went on another scouting trip. This time they headed to the Grand Canyon. They left at 4 in the afternoon, drove to the Grand Canyon, slept outside in sleeping bags on tarps. They got up and hiked down a slot canyon. Climbed back out and went to Lee's Ferry to fish. Hayden had a great time. He sure has great leaders and fun scouts. Hayden got back him really late Saturday night. Tired and stinky boy but with huge smiles and happiness. He had so much fun.
The day finally happened. Hayden is taller than me. August 2015 marks when I quit looking down to see him and started to look up.
Hayden is one of my heroes. He is happy and playful. He is obedient and spiritual. He is kind. He is one of my best friends. I enjoy each and every moment we for to spend together. He is a light in this world. A beautiful and and precious soul.
He loves looking around and saying "where's mom?" Such a crazy boy.
Happy anniversary to my incredible husband. I am so lucky this amazing man is mine. He is kind and loving and caring. He is humble and Christlike and full of faith. He honors his priesthood. He cherishes and respects his role as husband and father. He loves us and does all he can to constantly serve us.
Thomas is remarkable. He works hard. He serves often and willingly and quietly. He honors and respects his priesthood and lives to be worthy to use it. He tries his best to be a humble and obedient servant of God and disciple of Jesus.
This morning when I awoke, I looked around for him. He was quietly kneeling by the bed in prayer. I watched him. I said a prayer of gratitude for him. When in doubt, the first thing he does is pray. Whether it is about my health or how to parent or whether or not to attend events or how to proceed with a problem. He is a great man. He is humble. He is incredible.
This man wakes up each morning early. He gets me a diet coke. He makes me breakfast. He takes out the trash and starts laundry. He grocery shops. He cleans. He heads to work. But before he leaves, he makes sure I have everything I need.
He works hard all day. His peers always comment on his willingness to do anything and help everyone. He comes home and picks up prescriptions and run errands. He makes dinner. He helps around the house. Them he will rub my feet. Help me. And spends quality time with Hayden.
I'm so blessed. I'm so grateful. I picked a great man to be my husband and partner for time and all eternity. I'm so grateful for him. I love you, Thomas. Happy 15 years. Forever and ever to go.
Friday, September 25, 2015
The last two months has been filled with one medical issue after another.
August was spent in doctors multiple times a week. I'm grateful for Dr Levine, my neurologist. He has referred me to an incredible pulmanologist, Dr. Cameron Dick and a great gastroenterologist, Dr. Darrell Wadas.
I have had sleep studies, overnight oximetry tests, X-rays, breathing tests, tons of gi tests and surgery. I've endured spinal taps and biopsies and more tests than I rememeber.
2 weeks ago, I had surgery. Dr Wadas did an upper and lower endoscopy, and a colonoscopy. He dilated my esophagus, removed some paralysis within my esphogus, repaired tears and did biopsies. The dr was convinced it was cancer. We were thrilled when the biopsies came back negative.
However, the surgeon is putting me back in the hospital next Friday for more tests. They believe I have a paralyzed esophagus system. I will have motility studies and more. Oh joy.
After the surgery, I spoke with my neurologist. He questioned how much extreme pain I was in. He referred me to his in house pain specialist. I was told I had to get the pain under control as it is killing me. Literally. My nerves firing is eating me alive. So to try to ease the nerve pain, may actually stop the rapid progressing of this disease. So we are in major medication changes and major trying to control the pain.
A week ago, I went to the new dr to try and get the pain under control and the nerves to quit firing so intensely. I came home with new meds. By last Friday, I was in huge trouble. I went into a medical drug interaction, withdrawal symptoms from the other nerve drugs I was on. It was awful. By afternoon, I was almost admitted to the hospital. I promised to have someone stay with me for 3 days to avoid hospitalization. It was awful. The shaking, nausea, drowsiness and I couldn't even lift my head. I couldn't see. My migraine was crazy hurting. I thought I might die.
The doctor told me I had to adjust to the meds. It would be so hard to adjust the meds.
is to be expected.
Then, this last week, I have developed a horrible sinus infection, double ear infections and lung infection. Oh joy. So I am still flat in bed.
It scares me that I am on another antibiotic.
In August, I also dealt with a bout of pneumonia and bronchitis. I also dealt with a horrific eye cyst. Which required antibiotics and eye antibiotics.
It's been a crazy crazy two months. It's not over yet. I have testing all next week. I'm praying infection will leave my body. And that life calms down, at least a little. But for now, I lay here and pray.
Tuesday, September 1, 2015
I remember exactly how I felt as my dear bishop laid his hands on my head and pronounced a blessing of healing, strength and comfort on me through the power of the priesthood.
When the words, "there are no more big miracles coming. If you choose to stay, you will do so in a disease ridden and disable body. I will not be allowed to step in and work miracles for you. This is your choice."
So many thoughts crossed my mind but the most prevalent was, "how do I live without the life sustaining miracles that are given to me every time I am given a priesthood blessing?" Because of this line, more than any other, I was convinced I could not stay on this earth any longer. Why? Because I clearly understood the daily reliance I have on my Savior physically and spiritually. Without miracles daily, there would be no way for me to sustain life.
For weeks and months I struggled to understand. Especially when at every turn, there have been and continue to be miracles.
From the first night, just moments after hands were taken off my head, miracles have occurred. And to me, they have been huge miracles because I understand the reality without them occurring. Right after that first blessing, my lungs opened and I could breathe. Once again, air was circulating in my lungs. A miracle.
As the days went on and doctor appointments came up and other illnesses prevailed, again, worthy priesthood holders laid their hands on my head and miracles were wrought. Every time, I was in awe. Not because I don't believe in miracles but because I was told they were no longer coming.
Days, weeks and months have passed since that blessing. As The Lord has enlightened my mind and understanding, here and little and there a little, I have a clearer understanding of what he mean when the words were spoken, there are no more miracles coming.
At that moment, I was searching frantically for healing. I was looking at treatments in Mexico and inEuropee and new doctors and struggling to figure out which path to take. The Savior was telling me that healing, complete healing will never come in this life. As long as I chose to live, struggling and pain and fighting for my life each and every day will be my reality and constant battle. There will not be relief as in complete healing. I will never experience a day where I don't fight to live and struggle to do the most basic of tasks. I will always deal with health issues and concerns and live only,by the grace and goodness of God.
What my understanding now gets that it didn't then is that my Savior would never leave me nor forsake me. He loves me just as much or more than before that blessing. I think because I was expecting to have to walk this journey alone, I am even that much more in awe of His goodness and mercy and grace. To me, each day that I survive, I as miracle. Each time my dear husband lays his hands on my head and gives me a priesthood blessing, I experience a miracle. Each time they look and feel different. Some miracles may come in the form of a blanket of peace assuring me I am not alone. Other miracles come in the form of temporary strength to go on an outing I so desire. Others come in forms of just being able to endure the excrutiating pain and surviving another night. Some days the miracles come in the disguise of loved ones calling, texting, showing up or giving me that extra push to keep going.
All I do know that since I quit expecting miracles, they can't seem to be held back. My Savior is so kind and loving. He eases the pain, he helps me to breathe, he releases infections from my body, he strengthens me, he enlightens me, he teaches me, he encourages me, he wraps me in his peace and he send family and friends and complete strangers to miraculously ease my burdens.
This morning, as the pain last night was beyond bearable and the day ahead held challenges and events that without help, I could never accomplish, my dear husband laid his hands on my head. He offered up a prayer of thanksgiving and goodness to our Savior. We praised him. We thanked him. And again, my Savior, lovingly sent us a loving miracle. The intense pain in my jaw began to subside. The frustrations and feelings of giving up subsided and see replaced with love and hope and peace. A blanket of love enveloped me. I knew that I was not alone. I knew beyond a doubt that my Savior was in this room with me. He sent the Comforter to wrap me in His love.
I was made promises that as I deal,with today's hardships and trials that I would,not walk them alone. The dentist was blessed that he would work quickly, safely and efficiently. And would have the ability to ease my pain. The frantic feelings of anxiety melted away. I felt so loved.
My circumstances didn't change. I still must go to the dentist and endure pain. I still have to walk the road of stodgy without any sleep. I have to emdure the pain that comes with my illness. I will be required to give my all. Bit, because of my Savior and his miracles, my efforts will be enough. Because of him, he will step in and provide where I fail. He will make up the difference in all areas of my life. He will send help and there will be miracles.
Are miracles alive today? My answer is yes. I testify that they exist and are freely given by our Savior. I testify of the divinity of our Lord and a Savior Jesus Christ and in his ability to work miracles today, just as he did when he walked this earth. I testify of a loving Holy Ghost that envelopes us in his love. He wraps us in a blanket of peace and warmth just like our favorite blanket on a cold winter's night. He helps calm us to ride the storm. I know that my loving Father in Heaven, my God, knows my,name and my,circumstances. And although I am not close to perfect, He loves me. I am humbled that these three being so powerful and having so many responsibilities would take the time for me. Just me.
I add my,testimony. Miracles exist today. They are every where. There isn't a day that goes by that I am not blessed by their love and kindness and compassion. Call the miracles or tender mercies or love notes from our Savior. I just testify that they exist. They are everywhere. We simply must look for them and acknowledge them.
God is good. He is so so good. His son is my Redeemer. And the Holy Ghost is one of my,greatest and most cherished blessings.
And this morning, as my,husband so lovingly pronounced a blessing on my,head, I felt the life saving powers of my Savior flow they my,body. I felt instantaneous peace and comfort. And I knew that know matter what happens today, one thing is for sure, miracles will occur and I will never be alone.