Sunday, February 28, 2016

Help from beyond

I saw this picture for the first time a couple of days ago. Since then, I have seen it many times. The feelings it invokes is one of peace and comfort.

I am reminded of all the times that our loving Savior has stepped in and helped when me, Thomas and Hayden have been in surgeries or having medical issues.

I know clearly that our Savior has stood with Hayden and lovingly held him in his arms when he was just a young infant and again when he was a small boy. I know that our Savior stood with the doctors and nurses when Thomas was in ICU and they were guided by him in their decisions, which ultimately saved his life.

I have heard so many stories of how our dear Savior has changed things for me. From the day I died in surgery and came back without medical assistance to when our Savior lovingly inspired doctors and nurses in how to help me and did a complete different surgical procedure which made all the difference. Just recently, my neurologist was going to prescribe me a medication. He told me that for whatever reason, he just could not write the prescription. His hand was stopped from writing it. Weeks later, after testing and more understanding, we were told that the medication they wanted to prescribe originally, would have taken my life.

I testify that the Savior is in the details of our lives. That he guides nurses and doctors. That he helps patients to have the treatment that they need. I know that he guides surgeons hands and helps nurses remember all they need to during their hectic schedule of treating and caring for so many patients.

For all the times that my life and the lives of those I love have been spared, I want to thank my Savior for bing there for me. I am thankful for the dedication and service that the medical community puts in to learning how to care of the sick and afflicted. I am grateful that I can trust that my medical team and my loving Savior will work together to help me stay alive. I am truly grateful.

My fight song

Oh how I LOVE this song. As I hear it, it causes tears to swell and my heart to beat with pride.

I have had so many doctors tell me to go home and quit and stop fighting and just enjoy the time I have left with my family. It crushes my spirit when they tell me that. I am a mom and a wife and a sister and a friend. I am a daughter of God with a mission still left to do here on this earth.

So when the doctors tell me to give up..... I cried.

Now, when I hear how hopeless my life is, this song pops into my head. I can hear the words blaring and I sing with my entire body and all the fight I can gather.

"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 nobody else believes! Cause I've still got a lot of FIGHT left in ME!"
 
I posted this on Face book and these are some of the sweet and loving responses I received back. I owe each of these people as they will never know how much their love and support mean to me.

I wrote the following:
I absolutely LOVE this song. This is the theme song to this season of my life. As I started chemo last week, it completely knocked me to the ground. Second dose is today. I will be singing this song and am determined to win this battle. After all, I still have a lot of fight left in me. I also know that I do not walk this fight alone. I'm grateful for a loving savior who fights with me and sends loved ones to help me fight and to fight for me when I am simply too weak.

Some of my dear friends posted the following. Tears were freely shed as I read their cherished and unexpected responses included below: 

Then Laura Davis posted the following, with a beautiful rendition of the Piano guys, bagpipes, amazing grace and a beautiful song for me to listen to. Her words brought so much comfort to me heart:

Jerlyn, I have been thinking a lot about you lately sweet friend and when I saw this it reminded me of you. I cried through the whole thing thinking about what an amazing person you are. You are the strongest woman I know but you are also the most humble, kind and faithful. I just love everything about you and am so grateful to have your example in my life and your friendship in my heart. Stay strong through this. You can do it. Love you. 

Other kind and heartfelt messages came from loved ones and friends below. I posted this to prove to this disease that I would win. I put it out there on facebook for the world to see that I refuse to give up. That I will continue this fight and that I am stronger than this disease. What I never expected was this outpouring of love. It touched me more than words could ever express. I felt wrapped in the arms of so many loved ones.

As I have now been on chemo five weeks, I can't count the times that I have looked back at these messages when my world seemed too hard and the disease felt as if it was winning.

This song, these messages, my loving family, my friends and loved ones, my dear husband and precious son and my loving Savior and beloved Father in Heaven have made this journey bearable. The days go by and the nights are so incredibly long and painful but I am reminded that so many fight with me. That there are so many routing for me and want me to succeed and to win.

I am clearly aware that this is a fight that will not be won in this lifetime. That every day that I remain on this earth will require me to give my all and fight to stay alive. I have no hope of remission. No hope of a cure. No hope of ever feeling like a normal human again that has the ability to live life however I please without regards to struggling with a disabling health condition. But that does not matter. This disease is determined to take my life. It is determined to keep me down. It is determined to beat me. However, what is this diagnosis does not clearly understand is that I am stubborn. I am determined. I am a fighter. I fight to live! I fight for those I love and who love me! I am stronger than this disease. It may get a few good blows in but the ultimate victory will be mine. I will continue to live and love and cherish and find joy in my life. It may make it more difficult but I am determined to live my life to the fullest and the best ability that I can. I will make it better than any diagnosis. I will find more strength and joy than they could ever possibly give me. I will beat the best case scenario.

After all, I believe I am only on my sixth or seventh victory of defeating death as so many prognosis and doctors have given us. I do have a lot more fight in me. Watch out world. Jerlyn still has a lot of living left to do.


Saturday, February 27, 2016

Is there no other way

Is there no other way?

Oh how I often I find myself in prayer asking this question.

But, in the end, after the words, "Is there no other way?" uttered, it is always followed by the words, "But not my will be done, but thine."

I will always do what the Lord asks. I will always follow Him. I will go where he wants me to go and do what he wants me to do and say what he wants me to say, always.

But, sometimes the way that I must walk seems so overwhelming and straight uphill. The task ahead seems absolutely impossible. I doubt my own abilities to walk the trial and journey that is set forth in front of me.

This is not in any way me questioning my Father in Heaven, but questioning my own strength and abilities. I wonder if I have what it takes to overcome the challenge or fight the fight that stands in front of me.

But if my loving Father in Heaven assures me that there is no other way, then I will move forward while giving it all I have got. I am reassured in those moments that I doubt myself and my ability to do the task at hand, that I am not the first to ask the question. This gives me strength to keep going regardless of the response. Because I trust that there is nothing that me and my Savior together cannot handle. With him, all things are possible. They may be hard and take all I have, but with his help, I can do the things which he requires me to do. 


My sister-chemo

My dear sister takes the entire day, gets up early, spends an hour and a half in traffic driving to my house, comes and sits with me while I have my chemo treatment and then turns around into traffic and drives and hour and a half back home to do everything she needs to.

Jodi being here for me is priceless. Her love. Her sacrifice. Her devotion. Her loyalty. It is something I cherish. 

Chemo is emotionally hard. As they double my dose each week, the side effects change and I experience intense nausea as well as deep bone pain. This week it has almost knocked out my ability to walk again. It is frightening. It is scary. I'm always unsure what to expect. 

Jodi enduring the first several weeks with me is a gift I am so grateful for. When she is near she helps ease my fears, calm my nerves, endure the pain more and she distracts me from the worst of it. 

With the reality now of probably having to endure chemo the rest of my life, I am going to have to learn how to deal with this alone. Just as in the beginning of the disease, Jodi and so many others dropped everything  to help me. They were there as I endured stroke rehab. They were there with Ivig. They were there with each new step. 

Then the newness wears off and it simply becomes the reality of my life. I find ways to cope and endure. I am keenly aware of the pain and torment that this disease inflicts. But, I become better at coping and just holding it in. I lay everything possible at my Savior's feet. What I cannot, I carry as best I can. 

It's now week 5. It's still awful. The pain intense. The nausea unbeatable. The brain fog well not fun. 
I am trying to figure this out. I need to figure it out. I need to endure. 
I will figure it out. How to live as best as possible with a body that doesn't do what I want. I will learn how to cope with this new phase of life as I have all previous phases. I endure because there is no other choice. 
The long road begins now. Will I be able to do this or will this be the treatment that ends it all. With the weakness of my body, the disabling features of this medicine complied with this disease, and how very tired I am, the road ahead looks bleak. 
Trying to kill a form of nerve cancer or stage 5 nerve disease plays havoc on the nerves. It doesn't just attack the damaged nerves but shocks, damages and destroys all nerves, including the emotional ones. It really is so much worse than there are words to describe. But, I've learned, with the help of others, my Savior and loved ones, that moving forward and holding on is my only option.... Despite the pain and agony.... I will cling to life, however much of a life it is, well, that is yet to be determined. 

But I will forever be grateful for the sacrifice of so many. The weeks when I could not go on that my sister helped me adjust just by being here. 
Thank you, Jodi. Those days will always be priceless to me. To the countless others, my deep gratitude. I'm not quite ready to walk alone yet, although I certainly am trying. Please be patient as I adjust to the next new phase of my life. 

God vs Satan

I love this list that expresses which feelings come from our loving and kind Heavenly Father and which feelings and emotions come from the adversary, Satan himself.

I love the lists that reminds me when I am feeling anxious, frightened, confused, stressed, worried, discouraged, unworthy, not good enough and all the emotions that drag me down, that not a single one of those comes from my loving Father in Heaven. Instead, those frightening feelings that bring us down come from the father of all lies.

When our loving Father in Heaven is trying to speak with me, he calms me. He reassure me, he stills me to silence and calms my heart. He leads me to where I need to go. He enlightens my mind with truth and understanding and offers greater clarity. He forgives me for my weaknesses and shortcomings and my sins. He offers his immediate forgiveness. He calms my troubled heart. He encourages me to be better and try harder and reminds me that I am enough. He comforts me. He reminds me that I am so very loved.

I also love that God calls us by our name, never by our sin. He never refers to us as our sins. He loves us so very much. He wants us to succeed. He wants to do all he can so that we are able to return to him. He wants nothing less that all that he has for us.

I am grateful for this gentle reminder and look at if often. When the feelings from the father of all lies tries to rush me and frighten me, lying to me and tries to discourage me.  I list how my loving Father in Heaven feels about me.

It is amazing how quickly I am feeling better and reminded that I am known by God. He knows me, Jerlyn. And oh how he knows and loves each of us. We are precious in his sight always.

Nerve Disease


It would be helpful for me to remember that I have a nerve disease. Essentially, cancer of the nerves.

Although it mainly effects the nerves in my legs, arms and core, it is now spreading to my organs and even my brain.

As I couldn't sleep last night, I sat and watched podcasts and video conferences from my doctor about my disease. I learned so much. I am always learning and understanding more clearly.

Because I have complete sections of nerves that are destroyed, the brain sends signals to those nerves, the nerves are unable to get the message due to the damage, the brain then sends messages stating emergency in the nerves which causes excruciating pain. In addition to the pain, the brain also struggles to find a "home" for these nerve signals, so they shoot them back to the brain and bounce around. This can cause many different issues depending which signals were sent and where they returned.

For me, many of the misfired signals result in seizures. I have battled several different types for many years now. I have a better understanding of the different seizures I endure and how to cope with them. I know that after a grand mal seizure or after rolling seizures, I will be absolutely exhausted for at least 24 hours. I know I will be weepy and cry for no reason. It is just side effects of the seizures which are side effects of my disease.

Now that the disease has struck my brain, I must also endure how it effects my mood and my perception of my life. When my disease is under control, or not brain firing, I feel the blessings in my life and the tender mercies I have been given. I feel the blessings along with the pain. However, now that the disease has switched and started new symptoms, I am having to adjust for them and learn to recognize them for what they are and then learn how to cope with them.

When the nerves fired to certain parts of my body are completely dead, it signals a rapid response. Our bodies are so complex and so intricate that the weapon they use to get us to act or know something is critically wrong is anxiety, worry and fear.

When a heart attack starts, fear and anxiety is invoked. That anxiety causes one to react and call for help. When we have a seizure, again anxiety kicks in telling us we need to seek help. This goes for all critical diseases and systems.

With the nerve death now occurring in my brain, the nerve response system reacts on the fritz sometimes. Today it may attack the pain center of the brain and cause malfunctions. If it does, there are absolutely no medications that can calm or ease the pain. The only treatment for prolonged suffering is medically induced comas. If it responds in the system of alarms, that something is wrong, anxiety kicks in. 

So, as those helpless feelings roll in, I need to remember, it is simply the disease and nerve malfunctions that are causing me to feeling helpless and anxious and that I simply cannot go on. I need to hold on tight and remember that those feelings will pass. That the clouds will again dissipate and I will eventually feel the sunshine on my face and see the bright colors and joy that fills my life.

I love the sunshine and days that the flowers are all in bloom and spring is in the air, as we all do. I just need to remember, that as dark and cloudy and stormy as the dark and dreary winter nights can get. That the sun will shine again. That my world will again have a spring. That the clouds will part and the sun will break through and the warmth will again be felt on my skin causing the constant chill to depart.

In our lives, we all have dark winter days that are cold and bleak. On those days, I pray I can remember that Winter always turns to Spring and that life always looks better in the sunshine than the dark. I am trying. It is a daily struggle. But, I am hopeful that as I am armed with more understanding and more clarity on the disease that has taken my body hostage, that I can fight it better and hold on to the fact that the sun will shine again. Please be patient with me as I try to figure it all out. I am grateful for your prayers. It is thru prayer that we are brought to a greater understanding of where to find the light and how to beat the darkness. As I feel everyone's prayers, I know that the clouds break free and the sun shines. Thank you for the part you play in easing my burdens and calming my storms, there are no adequate words to sincerely express my gratitude.

Thursday, February 25, 2016

Worst day yet

II really try to be positive in spite all the excrutiating pain I endure. I try to find the good and try so hard to be grateful for the amazing blessings that are mine. 

However, I have really bad days. Days that I wonder if this fight is worth it. It would be so much easier to throw in the towel and go home. To just surrender to this body that is struggling to live. Nothing is more frustrating than trying to get a body that no longer works to do what you need it to do. 

I'm in my forties. I shouldn't have to fight and struggle to put on my own pants, to get out of the tub alone, to not be able to style my own hair, to have to have someone else button the buttons on my clothing. I shouldn't need help to get out of bed in the morning and someone to lean on to make it to the bathroom. I shouldn't have to have someone go get something out of the fridge for me because the reality is, if I tried to walk to and from the kitchen, I may honestly collapse. And I shouldn't have to have reminders for everything. To take pills, to call doctors, to rememeber my conditions and medications. And it shouldn't be such a struggle to fight for every single breath while trying not to breathe too deeply as it will cause my system to tighten up and I will not be able to breathe at all. The struggle is so real. The pain so deep. The frustration torments me. 

Yet, with all those painful things I experience daily, I can honestly say that the pain from the chemo last night compiled with whatever else was going on in my body, was one of the most painful days ever. By last night(week 5 of chemo) I literally thought I might die and worse yet, I wondered if that wouldn't be a better option. 

The pain was and continues to be so intense. The chemo took a toll that I was not prepared for. While battling the nausea and bone pain, I had a terrible attack. My heart, jaw, left arm, chestand back tightened and shot intense and horrific pain throughout my body. I thought it may be the end. I sobbed. And cried out in excrutiating pain. Help me. Somebody please help me. 

Thomas administered a priesthood blessing that said the pain would ease. It took a while but after an hour, it was still at breaking point but not death. Most of the night was spent just rocking to try and cope with the pain. Sleep couldn't come although I tried everything from heated blankets to hot pads and ice packs to pain meds and all natural treatments. I was really concerned I was going to have to call 911. I continued to try to breathe. 

By early Thursday morning, I was beyond done and felt completely out of options. I couldn't swallow as pills and minced food and even water was getting stuck. Pain meds and nausea meds were no longer an option. The intensity of the pain and torment grew. 

I tried an Epsom salt bath with oils to see if any relief would come. As I got out of the tub, even with the portable heaters on, I began to violently shake and convulse. My body was no longer regulating temperature. 

Thomas helped me and pulled out the electric blanket, heating pads and microwaveable heating aids. He wrapped me in the heated blanket at an 8. He had heating pads on my feet and neck to try to keep heat from escaping and added the microwaveable rice packs to top of my head and neck areas to help with pain and extreme coldness. He then piled on blankets. Nothing worked and I continued to shake. 

I prayed. I pleaded for help. 

This time my plea was very different from the rest.  I prayed that if this could not end that death would be a welcome option. 

As I thought of seriously wishing this over at any cost, I thought about what would help. I prayed for one of three things. First, sleep. If I could get a temporary break from the freezing and pain and nausea and torment, maybe I could continue to endure this. I needed a break. 
Secondly, I prayed for some relief. That the suffering would be eased just to the point I could handle the extreme pain and other symptoms. And if neither of those options were possible, I was ready to let go and quit fighting and come home. 

I pleaded for peace and hope and to be wrapped in our Savior's love. I prayed for some comfort to ease my heart. I took long deep breaths. 

Thomas administered another blessing as I sobbed uncontrollably for help. Some relief came. It came in the form of sleep. I was able to sleep for almost two hours. Prayers answered. 

I would awake to the pain at the same or slightly lesser lever.  Tears came. They flowed uncontrollably. 

Julie came over. Jodi called. Suzi dropped by. Hayden stayed close as he worked on schoolwork. I sobbed. I pleaded for relief in whatever form it could come. I prayed that strength would be given me so that I would be able to endure more. The pep talks helped some. Jodi pleaded for me to hang on for one more week until relief could come. I cried and cried. 

Luckily crying wipes me out and the crying put me to sleep. The entire day went this way. Excrutiating pain, begging for some relief, pleading for his strength and love. Collapsing from the exhaustion and intense its of pain. Up and down and in and out I went. 

Luckily, my Savior answered with a calmer peace. He allowed sleep to come over me. He allowed the insptensity of the pain to almost throw me into unconsciousness. I was so grateful for any sleep I could get. And any relief from the intensity of pain was so appreciated. 

As I awoke in the late afternoon, my boy was happy as he had finished steampunking his Nerf gun with Julie. I said a quiet prayer that he was okay despite knowing his mom was slipping and unsure if she could hold on anymore. I was grateful Julie had distracted Hayden from my emotions and intensity of it all. 

The doorbell rang. The most beautiful yellow bouquet of flowers was handed to me. In a mason jar. I immediately thought of my dear sister. It was as if she was hugging me right there. Then I thought of my own mother. Yellow. Bright flowers. Sunflowers and mums and purple accents. The brightness of hope. The love. It was perfect. It was hope telling me that I was not alone. It was hope begging me to hold on for one more day. It was a sign that I do matter and i am not alone. I read the card. I'm grateful for a sister that understood the torment I had just endured. I took a deep breath realizing Thomas would soon be home. 

Suzi came in and hung with Hayden to allow Thomas to just take care of me. My dear neighbor Sherri that I adore brought over dinner. Grilled chicken with nothing on it for me. Mango salsa for the rest the family. Huge baked potatoes with all the fixings so I could eat bland. Veggies. And she made me fresh and hot homemade bread as it is my favorite on chemo days. 

I thought of Joyce rushing out on Wednesday as my liver was hurting so bad and she took me for blood work and then lovingly sat on the couch all day too afraid to leave me. I thought of how she talked with Hayden and distracted him. How she lovingly out ice packs on me to relieve the pain. 

So many wonderful people were there. As alone as I felt I truly wasn't. People were pulling for me. I am sure more prayers were spoken in my behalf than I can imagine. I believe I was told to keep fighting. Keep giving it my all and keep going despite the unbeatable odds. 

Thomas spent the night rubbing my feet with lain creams and natural treatments. He used the heating pads massaged my feet and back. He sat with me. He held my hand. He patted my back. He prayed with me and for me. My son read scriptures on peace and overcoming hardships. Hayden offered the sweetest and most loving prayer, pleading for relief for his mom. 

Thankfully sleep came. I was able to sleep for almost three hours. Yes, awakening was painful, but not nearly as bad as earlier. Although I have been awake for the past several hours, I was blessed to be able to take my pain meds and anti-nausea meds, making for a calmer night. I'm awake with pain, but bearable pain. I'm awake but in way less pain that the last 24 hours did. 

I do know our Savior answers prayers. I know and have complete faith in his ability to take the sorrowing and heartache and provide us with complete relief. But I also know that we grow during times of trials and pushing our limits beyond what we think is earthly possible gives us the ability to handle more. So as much as wish some days to be free from this torment and earthly hell. I do know that, as the scriptures teach, "all these things shall work for my experience. And if I endure them well. I will be exhausted on high....remember! You are not yet as Job...your friends do stand by you and do not abandon you." 

I am grateful for the gifts I do have. For the wonderful people I am lucky enough to refer to as my support system. I am grateful for my relationship with my loving Father in Heaven and my Savior, Jesus Christ. For their ability to calm me when the storm must continue to rage. And although I felt so alone today and at the complete point of dying. I know that my Savior sat with me and sent his administering Angels to be at my side. That they too prayed for me. That so many prayers and blessings were mine today. 

For all of you that supported and loved me today. And any other day this week and during this trial.  I am truly grateful with all my heart. 


Wednesday, February 24, 2016

Puppy pack



This is what our house looks like on weekdays. Three pups instead of two. Olivia adds a unique dynamic to our day. She is such a young puppy that she has unlimited energy. Always running. Always energetic. 

I love them all dearly. They are my little puppy pack. 

Saturday, February 20, 2016

Jodi


I know that there is no possible way that I could make it through this life without my sister, my dear Jodi. She has been my buddy since the moment she arrived. I prayed for a little sister every night faithfully during my mom's entire pregnancy. When she came home from the hospital, I insisted on changing her diapers an feeding her. I rushed home from school to be with her and abandoned most all of my friends to spend time with her. I would sneak her out of her crib at night and put her in bed with me. As she got older, she always was with me. I dressed her up, took her on dates with me, and hauled her with my friends. She went on yearbook deadlines and to my friends houses. She slept in my room and we would talk and talk. I pretended she was my very own daughter. 

Life went on. I loved the times she would stay with me at college or I could go home to see her. She got married and moved to Tucson and then California while I was in Utah and then Arizona. I longed for visits with her and would be so happy while I was there and cry the entire ride home. 

One of the happiest days of my life was moving around the corner from Jodi and her sweet family. We were only 3 1/2 minutes away in an emergency and about 5 minutes otherwise. So very close. I loved just dropping by or meeting her at the park for the kids to play. I loved that we relied on each other for so so much. It was one of my greatest blessings and dreams come true. 

When I got sick, she was the first to stand up beside Thomas and I. She rearranged her world to take me to Mayo Clinic for IVIG treatments and doctors. She spent countless hours on my couch helping me, running me to doctors and bringing me diet cokes. She was always there to lend a shoulder to cry on. 

I have loved talking to her on the phone every single day. We share our ups and downs, the good and the bad, we cry, we laugh, we share our fears and dreams and our biggest concerns and accomplishments of our kids. 

Even since she moved an hour and a half a way, when I really need her, she comes. When Jodi is by my side, I am stronger, braver, more resilient and tolerate more. I give more and endure more and handle life better. Why? Because she helps me carry my load, she cheers me on and she believes in me. 

Jodi, I could not imagine life without you as my sister. You have blessed my life in beautiful ways. Not a day goes by that I do not thank my Savior for you. You are such a joy and blessing and one of the greatest gifts I have ever been given. I love you, Jodi! Always have. Always will. 

My Savior my friend

 
My beloved Savior. My Redeemer. My older brother. My Prince of Peace. My Comforter. 

He is my hope, my joy, my peace, my protection, my safe place, my teacher, my example, my friend, my everything. 

When I look at his loving eyes, in this beautiful painting depicting my precious Savior, I am drawn in. My heart beats at a calmer and more rhythmic beat, my body relaxes, my spirit stirs and peace floods into every part of me. I can feel him reaching out to me with his hand to pull me closer to him, I can feel his loving words as his beckons me, his beloved daughter, to him. 

I feel his gentleness and tenderness. I know that I am precious in his loving eyes. That is am loved perfectly and completely with no conditions and no reservations. I am enough just as I am. 

I feel him beckoning me to follow him, to trust him, to believe that all will be okay. 

When I look into the eyes of my precious Savior, nothing else matters. It's no longer about illness or struggles or earthly cares or financial stress or painful treatments. All I feel. All I can see. All I focus on is the love that is wrapping around me. The hope that I feel. The peace that comforts me. The reassurance that I am his. It is a feeling that comes so perfectly and completely and within moments, all of my earthly cares fade. 

I am reminded that all that truly matters is that one day I will stand at my Savior's feet. I will gaze into those loving eyes. They will pierce deeply into my soul. Nothing will be hidden from him. All that I have felt and experienced. All of my deeds will be transparent. My Savior will then embrace me in his loving and welcoming arms and say the words I long to hear. "Well done thou good and faithful daughter, you have chosen me above all else. Welcome home back into my presence where you will find eternal peace and rest." 

And in those precious moments, standing with my Savior, I will remember it all. My mind will be flooded of the joyous moments before I came to this life. I will remember being taught at my Savior's feet. I will remember why we were sent to earth and our mission here. I will see things clearly with eternal eyes and eternal perspective. 

And it will all become clear. Everything I experienced here on earth. All of the trials and heartache mixed with struggles and challenges will make sense. I will see the beautiful weaved tapestry of what is my life. I will understand how the rough patches brought strength and greater ability to grow. My eyes will be opens to the truth that the struggles helped me to actually feel greater joy and gratitude brought more peace and understanding. My life, the whole of it, the good and the bad, the heartache as well as the joyous moments will all be clear. 

I will then again fall at my Savior's feet and express true gratitude for each experience I was blessed with. I will see the moments for what they are from an eternal perspective. I will be just as grateful for the times that pushed me behind my own limits as I will the moments of sheer joy. I will be in awe of his wisdom and his perfect plan for each of us. 

I know my Redeemer lives. I know he loves me here today. That he walks with me always. That he rejoices in my triumphs and mourns with me as I struggle. I know that my Savior knows me personally and completely. He knows my flaws and weaknesses, my pain, my insecurities and heartache. He also knows of my strengths and challenges overcome, how I fight when I have no fight left and how I praise him even when it feels like my world is collapsing. He loves me for trusting him and believing that even though I do not understand his perfect plan, that I do believe that it is perfect and will benefit my life here on earth and in the life to come. 

I also know that I am loved by him more perfectly than I can wrap my head around. I trust my beloved Savior. When I look into his eyes, I feel the warmth of his love flood through my body. I feel a peace that is so complete that it must be eternal. I feel a longing for my heavenly home. And I am given the strength I need to continue on my journey here. I will keep moving forward with all the strength I can muster, giving my all, as I understand that this life is about so much more than just the here and now. For that knowledge and understanding, for that sweet reassurance, for the perfect way my Savior loves me, my heart is full and my gratitude beyond words. 

This life is so short in comparison with eternity. I pray daily for the strength to do what is right, to arm myself with all I need to fight for good and stand strong even when the whirlwinds of life try to beat me down. Because of him, I can remain strong. Because of him, I can fight a good fight. Because of him, I have strength far greater than my own. Because of him, I have more joy and more hope and more peace and understanding. And because of his great atoning sacrifice, I too, shall live again in his presence. It so truly the greatest gift ever. To be wrapped in my Savior's arms, to feel his warm and loving embrace and to know that I am protected in his loving care forever, oh how I long for that day. Until then, I will do all I can to be worthy of his trust and faith in me. I will do my best to face my struggles with all the faith and trust I can muster. I will live life to the fullest.  I will praise him and show gratitude daily. For I am truly grateful for all the gifts and blessings that he has given me. For the struggles and weaknesses along with my strengths and greatest blessings. For I know that his plan is perfect, his timing impeccable and his love worth anything I could endure here. I will be faithful in all things until I am able to fall at my Savior's feet and be welcomed back into his presence. 

Goodbyes

How do you say goodbye to a best friend? How much harder is that goodbye when you only have a week's notice that he will be moving to Utah in only a week?

Hayden was devastated and said that he is beginning to really dislike Utah as so many people he loves keep moving there. I think his biggest devastation was Chad and now his dear friend Gavin.

Gavin and Hayden only met this past year at scout camp when Gavin moved into the ward. But a friendship began. Gavin became a fixture in our home every weekend and any day that he had time off of school.

And although they may look years apart, looks are deceiving and they were only a couple of months difference in age. Crazy.

Gavin and Hayden were two peas in a pod. They spoke the same language, loved all things video games and Minecraft and 007. They loved computers. They loved nerf guns. They loved playing with the dogs. And oh how these two boys loved pizza and eating tons of food.

Gavin absolutely amazed me that he could put down more food than Hayden. Seriously, Hayden can eat and eat and eat. Gavin stayed right with him. I would laugh at these boys because they both thought they could eat their own little Caesars pizza.

Gavin was polite and kind. He was thoughtful and respectful. These two boys got along simply perfectly. I was so sad for Hayden and so sad that Gavin would no longer be apart of our lives.

My heart absolutely breaks for Hayden as I know how hard it is to have your best friend move, especially when you are home-schooled. I know both boys will go on and be fine but know that friendships like theirs are truly one of a kind.

We are already planning to send them to EFY together and hoping that Gavin will come back to scout camp. Gavin's grandparents live in the ward next to us, so hopefully they will still keep in touch.

Friends are an important part of life. When you find a friend that makes life easier and hold on tight and do all you can to keep in touch. I have had lifelong friends. Some that moved away when I was Hayden's age. I am happy to say that they are some of my dearest friends today. So I know it can work.

We miss you, Gavin! Have your parents put you on a plane, you are welcome in our home, ALWAYS!

Come take my hand

I love Facebook and Instagram for the goodness I find on their. My feeds are filled with inspirational quotes and friends. I follow lds.org, mormon.org, and all the prophets and general authorities. As well as conference talks and missionary groups. Because of this, I am blessed to see incredible pictures like this one, in my feed.

As I was scrolling down and saw this picture, for a moment, I didn't just see a picture of the Savior reaching his hand out to anyone. What I saw was much more personal.

I saw our Savior, standing there, reaching out his hand personally to me, Jerlyn, his daughter. I saw his eyes and the way they shown with love for me, his daughter. I saw his hand reaching to steady me. I saw my Savior standing before me in such a real way. Not just a painting. Not just a picture.

I saw my Savior calling me. As he beckoned me to come, I prayed. I prayed for him to allow me to reach out and take his hand and pull me safely into his arms. I prayed for his strength to encircle me. I prayed for his healing powers to help lift me. I prayed for his love to touch my heart.

After stopping and staring into those loving eyes for a few minutes, I went to scroll down to the next post. I couldn't. My mind, my heart and my soul couldn't physically turn away from my Savior. He compelled me to come, he spoke the words, Come Follow Me. It was as if he was directly speaking to me, to my heart and mind, from this painting.

Tears flowed down my face. They fell quickly as my heart grew bigger and bigger until I felt it would explode with love for my Savior and from my Savior. Each time I see this picture, my heart again fills with love and gratitude for how much my beloved Savior knows me, his daughter, Jerlyn. To me, that is the greatest gift of all. To love my Savior and for him to know and love me.

My friend, Sarah

I am so unbelievably grateful for visitors. It warms my heart, lifts my spirits and brings peace to my soul. It helps me remember that I am not alone in this fight but have countless people praying for me each and every day.

We have been dear friends with Sarah and Jordan and their four adorable adopted children since before they ever started the adoption process. We met them when they were newlyweds and loved serving with them as ward missionaries. We became friends instantly. In fact, as they spoke in sacrament meeting, I felt a strong impression that we needed to be friends with them and that they would become an important part of our lives.

I thought, Okay, how do I walk up to newlyweds, who are in their early twenties and say, hi, the spirit says we need to be friends.?! But, I did. Well, basically. I talked with them and told Jordan he reminded me of my nephew, Brigham. Just how he talked of his own adoption story, long before they would try to adopt themselves. Together, we saw many events thru including many heartbreaking failed adoptions of a few of their precious beloved children prior to getting these beloved four little ones that we oh so love.

With each new child, Sarah and Jordan would lovingly bring the newly placed baby to our home. We loved on those babies and decided being grandparents was going to be the greatest thing ever. Hayden even got attached and asked if he could be an uncle. I loved watching Jordan have fun with Hayden as we all talked and held their precious babies.

One by one is how most families come together. Not for these two. They were determined to be parents all of their lives. As their first child was placed and after four months taken from them, I watched Sarah's heart break. I wasn't sure if she could continue this path. Oh how I ached for her after all the failed adoptions and miscarriages we experienced.  Then, Zee came into their lives. Our beloved Zee. Hayden truly bonded with this child in a way I had never seen before. As he held Zee, I saw the precious big brother Hayden would have been and realized he would be one amazing father. Zee has endured more heartache and loss and tradgedy then most experience in a lifetime. I am so grateful for the true blessing that he is to our beloved friends and how lucky he is to be their son. I cannot believe he is now 4 years old.

Mr. Rex arrived shortly after, at only a year old. He was a joy in my life from the beginning. Oh how we bonded. He was the first adopted and the oldest at 4. He is joy and all boy and full of life. I love how he loves me and I simply adore him.

The twin girls arrived after much heartbreak of the loss of three other children plus Zee being placed back in the custody of his birth family. Oh how those twin girls warmed Sarah and Jordan's heart. They were so tiny and just born, so fresh from our Heavenly Father's arms. The girls have only known love as their entire lives have been spent with their beloved parents.

One of the most special days of my life was watching the three younger ones all sealed on the same day, while I was privileged to hold my dear Rex in the temple.  Definitely one of the best days of my life.

So, when I was really struggling and unsure how to keep moving forward, Sarah, coming in to visit me from Utah was exactly the medicine I needed. When my sweet friend showed up at the door, I couldn't hug her tight enough. Oh how I miss her. Her spending time with me and talking with me and hugging me was such a priceless gift. Then, in true Sarah fashion, she brought me the sweetest gift, a chemo blanket. It is beautiful. It is soft and the right thickness. And it is colorful and bright and just perfectly Sarah in a blanket.

I have loved that blanket and used it every single day. It accompanies me to dentists and doctors where I am scared. Being wrapped in it brings peace. Sarah said when I use it to know she is wrapping me in her love. I feel her love and support. I feel her strength. I feel the compiled strength of her entire family. And then I realized that as I used this blanket that I could feel the strength, love and support of all of my friends and family both near and far. The more strength I gained, the more I realized the power of a blanket of love.

I then sat pondering the love of my Savior. He sends the Holy Ghost, his comforter, to comfort me, guide me, send peace to my heart and remind me that I am never alone. His love is like a blanket that wraps around us, protects us and keeps us safe and comforts us and gives us strength.

In order for me to feel the love and care of my dear friend Sarah, all I need to do is pick up the blanket and wrap it around me. Instantly I feel her love. Within moments, that love is multiplied with the love and support of so many others. As I feel the love of all those family and friends, I feel more and more strength and comfort and peace.

So it is with our Savior. He stands waiting. He wants to send us the peace and protection and strength and love that he offers. He is there, always waiting, just as my blanket is waiting on the couch for me to pick it up and wrap myself in its love. Our Savior stands with open arms just waiting to encircle us with all he has.

I am so grateful for friends that become family. For friends that know when you need them desperately to continue to hold on. Friends that know how to show their love and allow you to feel it. Friends that listen to the Holy Ghost and our Savior as they wrap their own blankets of love around themselves. As thankful as I am for my friends and family, I am also incredibly grateful for the understanding and reassurance that my Savior is there. He stands with open arms. I just have to ask for his peace, his comfort and his love, and he is there, just like that blanket, always ready to give me what I need.

I may get weak. I may struggle to face these challenges. But one thing is sure. I am never alone. I have so many loved ones that are fighting this battle and disease with me. They wrap their arms around me, the lift me, they hold me, and they give me their strength when mine has diminished. Our dear beloved Savior also helps me. He lifts me, he wraps me in his love. And just when I think I can no longer hold on, I am blessed with added strength to face whatever challenge stands in front of me.

Thank you, Sarah for the sweet reminder. I adore my blanket and I love and adore you, my friend. Thank you for easing the burden. You made such a huge difference. 


Monday, February 15, 2016

Greatest fear

Why am I completely and utterly terrified and fearful of the dentist? Knowing in a few short hours they will put shots into me and try to surgically remove and fix teeth absolutely with all my heart an soul terrifies me. So much so that I could only go when Thomas could come. I need him to talk to the dentist and explain the issues. I need him making decisions. 

I know it's crazy. I can talk to hospitals and neurologists, discuss chemo and seizures and clinical trials and experimental procedures. I can hold my own with most specialists and endure excrutiating painful tests. I can endure spinal taps and electrical testing,EMG testing and biopsies and painful stabs.

I can deal with attorney and disability and judges and lawyers and talk to the bank about foreclosing yet a dentist. I literally would rather have my leg cut off. 

I hate teeth. I despise the problems. Yes. Now that I have been diagnosed with these new diseases, it is clear that the first place it attacks is the eyes and mouth. Teeth are susceptible as the disease literally shatters the teeth and crumbles them. It takes filings and just disinigrates them. The same fighters in my body that will not hold an iv or chemo port or stitch also will not hold a filling. Because of this, it attacks every filling and begins to disintegrate the tooth. Then it eats the nerves within the mouth. Causing horrific pain from throbbing ad zapping nerves to complete shut down as the nutrients do not get to the teeth. Add to that that I no longer have salivary glands in my mouth so dry mouth is horrific. Add seizure and pain meds. Then add daily and sometimes hourly vomiting. Add sucking on hard candy so I can swallow. Then the paralysis of the esphogus tract and dysgraphia and swallowing issues and I can only drink out of a straw. Then add chemo. Needless to say, I'm a mess. I'm a dentist nightmare. 

I'm in a new group for sjogrens disease and small fiber neuropathy and autonomic neuropathy shutdown. Almost all have complete dentures. Implants would not take. Teeth just disintegrated.  The nerves die causing no nutrients to move into the mouth. Most have spent more money on dental than anything else. And the pain. It is indescribable. It's living all day every day with an exposed nerve. A cramping jaw. Need for a root canal and unable to afford treatment. It's constant and wearing. 

Add complete anxiety attacks. Add crazy costs to an already saving and scrimping budget and it creates money stress. Treatment is more about what we can afford or better not afford than what is needed. For three years, I have told the dentist to proceed with the least expensive way possible. I've pulled teeth instead of root cans and crowns. I've patched teeth that needed crowns. I've lived with complete holes in my teeth and the pain that comes out of not being able to afford getting it fixed. I have teeth that are dead and hurting causing jaw cramps constantly but am told someday they will just disintegrate and fall out. When it does, it will be free treatment instead of $1500. So I deal with the pain. 

I've called every free or discounted dentist out there. Tried purchasing additional dental insurance. Even tried the free clinics. With my medical conditions. No help. I've tried ahccss. They no longer cover dental. Even emergency. I've tried fighting for medical coverage. All to no avail. 

So we raised money at a garage sale on Saturday. Hoping to be able to treat a couple of teeth. And get one fixed that a hole goes all the way thru my tooth and a couple of chipped teeth. Right after the garage sale, my tooth shatters. All the money we raised and then some will be required to fix this one tooth. So much for the others. 

I know I should look at it as we raised the money and had the money to fix the shattered tooth. But I was so hoping for the front teeth fixed so I can smile again and talk. I try to keep my lips together when I smile and talk to anyone outside Thomas and Hayden. It's hard. 

Like it or not, in six hours, I will have to climb in the car. I will have to drive to the dentist. I will have to force myself out of the car. I will have to go in and discuss what medically necessary. Then we will talk only major necessities. Then we will talk only the teeth that will cause issues during chemo or have the post entail of causing a heart strep infection. Then we will discuss money. We will put what we have on the line and the insurance and see how far we can get. We will beg the dentist to try and patch holes and do temporary fixes. 

I will have to endure pain. Pain from my jaw. Pain from the teeth. Pain from them not being able to give me as many numbing meds because of chemo. All the last dental work, filling cavities and drilling teeth were done with me strapped down to a chair so I could not move as much. 

I afraid that with my mouth still having sores and unhealed from the lip biopsy that the dentist cannot work on me. I realize is should quit playing this up in my mind and try to sleep. I just needed to vent. 

I need Hayden to someday understand that his mom was scared. Completely frightened. I didn't have the answers. There were thing s that made me crazy and u rational. That life was sometimes completely overwhelming and you are trying to balance and juggle so many different pieces. 

Hayden's struggles may not be teeth and money and health challenges and how to do those things with conflicting goals and no money. He may face other very real and complicated tasks some of which absolutely terrify him and push him behind his mortal limits. Things that force him to his knees and requires him to face it with his Savior and with his wife as there simply is no other possible way. He may face hard times that scare him. That make him want to throw his hands in the air and yell UNCLE. I want him to understand that it doesn't mean you are negative or don't have faith. It doesn't mean you are a failure or a risk taker. It doesn't mean there is anything. Wrong with you. 

It simply means it is one of the hardest paths the Savior can ask us to walk. There comes a time when each and every person will have to walk their own road to Golgotha. When the last thing you want to do is what is required of you. It will bring you to your. Knees and cause you to cry out to the heavens, "is there no other way?"  " please Lord. Please. If thou can, will thou please remove this cup from me. But, not my will but thine be done."  

And no matter how rough and scary and upsetting the road is at that point.  If you sincerely ask those words of our Savior. I know his response and you can be assured of our Savior's response. He will send peace and comfort. He will allow you to cry and break. But when the breaking is done and the pieces of your heart and soul and works have scattered. Our loving Savior himself will come. He will take the broken pieces. He will lovingly pick them up. He will hand them back to you. But he doesn't stop there. He sorts the broken parts and gently puts them back in and comforts each and every part of your broken heart. And although the circumstances do not change and the answer is "there is no other way. This must be faced. This must be overcome. But I will help you. You do not walk alone. You are my precious child. And I am here for you." 

And what was moments earlier was a complete and utter mess becomes a beautiful heartbreak. The situation doesn't change. The trial must be walked. The journey and long road must begin with a single step. But, as you ask the heavens above and our God above to help. Peace comes. The words, "peace and suffering will be for a night. But if thou will bear it well, I will exhault Thee on high..... I will not leave thee nor forsake thee....I stand with thee.....I will help to bear your burdens that you no longer feel them on your backs....for lo, I am with thee." 

And peace floods into your heart. And a calmness envelops you. And the fear begins to subside. And our Savior's peace fills in each empty part. Then you breathe easier as  peace takes over. You can almost feel the loving arms of our Savior wrap around you. His peace comes. His calm. And you realize that although the storm still rages, that the master of the tempest jaunt calmed his child. All of a sudden it doesn't matter what others think or what situation it is. Because you are keenly aware that the master himself. The God of heaven and earth visited you. And you remember the scriptures "I visit my children in their afflictions. And I do comfort them and bring peace." And if Hod himself is willing to lift your burden and carry it while you can rest. Let him. Don't try to take it back. Don't fight him for it. Allow our Savior to once again carry your load. It was told that our Savior went before so he would know how to succor his people in their trials. 

I testify to this. I testify that our Savior does come. He succory those  that ask. He mourns with those that mourns and comforts those that stand in need of comfort. He is truly my Savior. He knows me and I know him. And there is nothing that he cannot overcome. "Remember my son, I have overcome the world."  I testify of the divinity of our Savior. I know of his great love for me. I know I am known by my Savior and God in high. They love me. Jerlyn. They also love you, Hayden. They are aware of me in my trials and they will always be aware of you in your trials. And just when all hope is lost. They can bring it all back. Hope. Peace. Comfort. Love. Allow them to comfort you. As they have me. 

I love you, Hayden. I believe in you. You can face whatever our Savior asks. Turn to him. With his help, nothing is impossible. Even facing our biggest fears.  

Sunday, February 14, 2016

Chemo week 3

LMy third dose of Chemo and the three days since has brought havoc to my world. 

I was grateful to have my sweet sister here to entertain, watch me, help me and distract me from the side effects. Days with her here makes it easier to handle and I feel stronger. She is such an amazingly strong person that she can actually share her strength with others. I'm very grateful for her and all those that help us. 

Wednesday, soon after the chemo entered my body, the nausea began. At least I am grateful it hadn't continued over from the previous two weeks. Then the deep pain in my bones. Then a stabbing in my heart like a stake was pushed thru from one side to the next. After screaming out in pain, Thomas administered a priesthood blessing. The pain immediately began to ease as did the panic. The deep pain grew more intense as I tried walking on my,legs.    

As Jodi and I talked, the rolling of seizures began. I could feel myself sliding in and out of consciousness and conversation. As I became back aware, I noticed the panic look in Jodi's eyes.  The confusion grew deeper. My'vision began to fail. An aura surrounded those I love. Food. I need food to counteract the nausea. And oh. Movement. Movement is bad. It was if I was fading in and out of a kaleidoscope turning. Jodi's voice sounded distant and like she was in slow motion. Hayden stayed there and strong. His voice is also a beacon to keep me grounded. 

Jodi made me toast and an egg. The protein/carb combo works great at reducing nausea. I then started into doze. The dozens of seizures had worn me out. 

Jodi said that as I slept, a huge peace and serenity filled me. I had a huge smile for awhile and was just completely at peace. She said she was comforted by the way I was completely transformed back to me prior to being sick. She watched me and smiled more when I began to laugh out loud. She talked of the sheer joy. Thomas said I have done that a couple times of weeks lately. It's as if I'm being strengthened or helped by unseen hands. 

I felt better when I awoke. Not so seizure effected. Jodi left. Hayden stayed and helped me as the next round of seizures were brought on. Man that kid is strong. He does what he needs to and gets me down and waits. While he waits, he prays. He gently slid a blanket over me and rested my head on a pillow. He calmed the dogs. He got in bed next to me to be the reassuring voice when I came back from the seizures. Calm as ever.  I'm not sure how he does it but I am oh so grateful. 

I pulled back out. Thomas came home. I had developed a rash that was beginning to bleed from the lace on my garments. He made sure I was stabilized and headed out to the garment center to see if he could find anything to work. 

Suzi volunteered to stay with me. The rolling seizures began again. One after the next. Unable to talk or move. Just with it enough to  get to safety. Suzi laid me on the couch. Put a pillow under my head and took over watching me. She watched as the seizures continued one after the next. Dozens continued. She did great until Thomas could get home to take back over. He helped me to bed and after the seizures continued for another hour, he again administered a priesthood blessing to pull me out of the rolling seizures. I don't remember the blessing. I wasn't conscious. Thomas tells me that it promised relief from the dozens and dozens of seizures my body had endured that day. And a calm. I grateful for a husband whom cherishes and utilizes the priesthood power he has been granted. 

After all the seizures, the intense itching began, the and the irritation. No sleep came as my body fought the remnants of all the seizures. So I watched my husband sleep knowing it would be a short time before he was awakened and went to help me again. 

Thursday brought more nausea and more seizures. Dozens and dozens of seizures. The intense itching. Unsteadiness. Fatigue. Confusion. I slept some. Tossed and turned. Used every main medication available to me from pain meds to nausea to calming oils. I was grateful Julie came and stayed as I was scared to be alone. Hayden loved her being here to julie. When she wasn't taking care of me she helped him spray paint Nerf guns and use power tools. Having him distracted is a huge blessing to me. And my emotions. 

I also awoke Thursday to realizing not only was the rash on my,back now bleeding. I had developed painful bed sores. Ouch. That has been one painful thing to deal with. Also temporary but complete paralysis of my right fingers, hand and arm. Oh how it hurt. Oh how I was scared. 

Friday brought more seizures. Less nausea. Less intense pain and more all over pain. And a huge surprise as a brushed my teeth. Another tooth cracked in half. It hurt as it hung in ther deep between the gums, wedged in. Hayden awoke Friday morning sick. Really sick. Great. Now what? Suzi and Joyce jumped in and took care of him. Strep and sinus infections and an antibiotic. Many prayers have been offered for Hayden to get better and my not get it. 

Saturday was some relief. I slept while Thomas and Hayden and Joyce and suzi ran a garage sale. Have I mentioned the blessings in my life. 

Saturday evening my tooth disintegrated and fell out in chunks. Seriously. It hurt. My jaw throbs. I am hurting. 

 It's been one rough week. I feel like I cannot catch a break.  Cannot eat. The pain intensifies. What is happening to my,body? It doesn't stop but continues to just be a constant rotation of more issues and less answers. More waiting and more pain. 

Again, I am awake for another sleepless night. I wish I could sleep. I am so tired. So itchy. In so much pain. And unable to do anything but pray, breathe in and out and endure. I pray the symptoms ease. 

So almost four days in and this is where we were at. Not an entirely fun week. But I am grateful for all the help given by earthly and heavenly angels. I feel their presence when I cannot go on. I feel the presence of peace provided by this gift. I am l grateful for a loving Savior who comforts me. 

I am hopeful. I am praying that somehow things get a little easier and little less heavy. I can only imagine the weight of this burden if the Savior was not helping me to carry the load. The weight now consi,was me. But I know that if I drop my load, my Savior will steady me. That brings great relief. As I do my all to hold it all together. And I continue to pray for better days. 

Thursday, February 11, 2016

Sick

Second dose of chemo and I look just great. I promise. I feel way worse than I look. It kicked my butt. After a week of nausea, I think the deep bone pain was a welcome relief. I think I handle pain more than nausea. I used to it. I'm experienced excrutiating and debilitating pain for so long that I am better equipped to handle it.