Monday, May 18, 2015

Kidney - bladder -UTI fun

I gave in and went to the dr today. I was in too much pain to cope and decided I couldn't survive without antibiotics. I'm glad I went in. I had tons of blood and proteins and something else in my urine. Not good. So after a rosefin shot in the bum, a prescription for antibiotics and another prescription for anti-nausea meds, I was back home. Feeling awful and terribly sick. 

I have 48 hours to get better or find myself in a hospital. I'm praying for relief. 

As I walked in the door, the neurologist office called. I explained my,symptoms and how I feel I an dying a little more each day. I just can't recover. They said this latest infection may help me get the treatment I need. I hope. 

So I am back down. The meds make me really sleepy. But I'm hoping for some relief. 

Ready to fight this. Read to move on. And praying I get the help I need. 

Thursday, May 14, 2015

It continues...twists and changes...

And the plot continues....
Insurance again denied all. Everything. 
I contacted the doctor office. The doctor is still gone. There is nothing they can do. 
So. We search. Search for answers. Search for options. Search for help. Search for resources outside of medical world. 

We are looking into alternative treatments in Mexico and other places. We are reaching out to all natural doctors. We are praying and pleading for guidance and help. 

Prayers are appreciated. Please pray that we will be able to embrace, accept and do whatever our dear Savior asks us to do. We have put our trust in Him as we seek further understanding and knowledge. We have told Him that in all things, "Thy will be done."  

We love our Savior and loving Father in Heaven. Our desire is to so what He asks. We trust His path. We give Him our true devotion. As we try to seek His ways and path He desires for us, we pray that doors will open and we will find His will. 

We are watching one of the Star Wars movies tonight. The fight between good and evil is real. We came to this earth to receive a body, choose good over evil, remain true to our covenants and promises made with our Savior, and to return to His presence. As I watch the fight between good and evil, I feel such a pull to do our Savior's will. To fight. 

As we watched Anakin turn from the Jedi Force to the Dark side, I was reminded it is the small steps and small decisions in which we determine our destiny. Do we allow anger and jealousy or hatred and entitlement to cloud or judgement? Or do we remain faithful and humble and patient and willing to submit our will to that of our Savior? 

I find myself at a crossroad in life. One where anger and resentment, frustration and entitlement could take over. Where frustration over fairness and long-suffering could easily be cultivated. I will not let anger or fear or frustration win. I will be patient. I will humbly submit to all things the Savior sees fit to have me walk. Regardless of the outcome. Regardless of the pain. I choose love, hope, repentance, goodness and our Savior's will. Until my Savior can say of me, "the force is strong with this one." 

And I may have feared up a bit when Yoda said, "death is a natural part of life. Rejoice for those around you who transform into the force."  

And I smiled as Yoda said, "Patience you must have my young Padawan!"  I wonder if that is what the Savior is saying to me. "Oh Jerlyn, have patience."  I'm sure trying. Whatever lies ahead. I'm willing to submit. 

Wednesday, May 13, 2015

Who to believe? What to believe?

This morning I woke up determined to get to the bottom of this treatment/insurance dilemma. I called the dr office and was told that insurance wasn't responding to their request. I was furious and done. I lost it and started sobbing to the nurse oractioner at my dr office. I was gasping for breath and struggling for air to fill my lungs. I'm getting sicker by the day with no relief. This dr was supposed to be the answer. An appointment in February has brought almost 3 months of waiting and hoping for relief as I digress daily. I sobbed. I asked for the insurance reference number. 
I contacted insurance ready to just let them have it. However, they stopped me before I could start. Which preautorization was I calling on. Procedure not pharmacy. The representative asked which open case? Which open case, you guys denied the first request to IVIg, I am talking about plasmapheresis and the procedures regarding that. I was told NOTHING has been denied by insurance but my dr hasn't filed the necessary paperwork to process either request. WHAT? Did I hear that right? My mind spun to each conversation and each word with the dr and his assistant and other staff. What? Ok mind. Process. I listen. I ask questions. I start to cry. I lost it. Again I was gasping for air. The insurance representative told me not to cry they were on my side. My side? You won't let me get treatment?! I am dying! Literally dying a slow and incredibly painful death with little relief. Each day I hurt more and cope less. Each day the fight to keep positive and hopeful and not give up becomes a greater challenge. Each day, each minute the pain escalates, my breathing deteriorates, my walking becomes more difficult and enduring feels more impossible. They have killed me. But now I question who is "they"? 

Answers slowly come and more questions invade my head. If this is true? Could it be? But Thomas and I sat across the drs desk as he told us of conversations and denials. New procedures and less hope. I was told insurance denied but as I spoke with insurance, the more it looked like who I trusted had ultimately betrayed me. The one supposedly helping to save my life was indeed the one slowly killing me. Wait? Wait! My head screamed for it all to slow down and I plead for help from my Savior to recognize truth. 

Then the insurance agent told me facts and dates and things I knew that she had to be telling the truth. Then she cautioned me. I need a dr I trust yet only 2 in the staTe. My current dr and prior dr. The question was posed. "You need life saving treatment. You need to be able to trust your doctor. Do you trust someone to make decisions with your life that is able to lie to your face? Proceed cautiously. If you push hard, your doctor will no longer treat. But do you trust someone who is dishonest?"

My mind spun. What do I believe? Who do I believe? If he lied to me about conversations and denials and convinced me into experimental treatments why? What gain do they have? Why lie to me? Is Mayo clinic right??? Is there nothing to be done? Is death imminent? Am I going on false hope and security? Am I being flattered by hope? What do I do? Where do I go? In whom do I place my trust? 

Overwhelmed, I plead for understanding and enligtenment. I plead for help sorting through this info and the ability to decipher truth. I thought I was. Good judge. Yet I have been deceived. I feel anger and disgust, frustrations and disappointment and confusion and helplessness. 

I do recognize these feelings are NOT from my Savior but the adversary. How do I sort thru this mess and have the Spirit with me. Only one way...., forgiveness. Really, I thought. I am only just finding out about this. For three months I have digressed and been in increasingly more pain. I have begged for help and lied to. Yet, before I can sort thru these feelings and emotions and discover the truth, forgiveness and complete Christlike forgiveness is what you are asking of me. 

The words my Savior spoke on the cross swept my mind. "Father forgive them." Forgive them? Really? Keep,going? Keep trusting? The blessing said this dr was a good man that listened to you. Then how did this happen? Again, forgive them, entered my mind. Forgive. Forget. Move forward. Don't let hate and anger poison your heart. Really? Do you understand how hard this has been? Do you know how much this has hurt me and my family? The endless torment and frustration this has caused? The thought that my life wasn't worth saving and the one that I am supposed to trust lied and you tell me to forgive. Now. Immediately. Completely. 

How? Why? 

The answer comes clearly. Love. Jerlyn. Love. I am love and hope and concern and care. I am better days and brighter tomorrow's and clearer paths. I am love. 

The adversary is revenge. And anger. Hopelessness. Pain. Mistrust. Confusion.  

I am light. I am truth. I am love. I am forgiveness. 

So my choice. To move forward and if s answers but you are requiring me to forgive and let it go. How? His response: Fill your heart with my love and my peace. "Peace I give unto you. Not as the world does. Peace I give to you. My peace. My love." 
I stop. I listen. How? I don't know how. I'm so so so frustrated. I want help. 

Move forward, Jerlyn. I know the pain. I have suffered it already for you. All the pain and injustices of the world I have already bore for you. You do not have to. I will and have already done it for you. Your job is to forgive.  

I plead for forgiveness and understanding. I prayed to be the person my Savior believed I could. I begged that anger would not take hold of my heart. I'm trying. I'm. Trying. I. Doing my best. I'm pleading for a forgiving and accepting heart. I am pleading for hope. I am pleading for answers. I am pleading for my Savior to teach me while I look for answers. 

My world flipped upside down today. I wanted to give in and collapse. Instead mymSavior requires me to stretch and love and offer Christlike compassion to the treaspasser. I will try. I will give my all, but am praying my Savior, like always, will be patient with me.  For I have a long ways to go......,

Saturday, May 2, 2015

Plasmapheresis and more

Thursday morning was the long awaited doctor appointment to find help. It started out turning my emotions on edge when I was told my appt was actually the day before and they couldn't get me in for over a months. Tears fell. I was so tired of just holding on. So they agreed to get me in an hour later. That I could deal with. 

Dr Levine started out with the facts. He is straight forward. No-nonsense. No niceties or formal introductions merely facts. He explained the complicatedness of my situation and how with so many disorders and so many things against me that cures are not possible only prolonging and hopeful better quality of life. We listened. 

He explained that insurance will not approve IVIg treatments. But in scouring my file he had another idea. I transplant form of plasmapheresis. I will surgically have a catheter and port implanted into my heart. From there, bi-weekly, I will have all of my blood drained, thru my heart. The antibodies and anti-coagulation plasma will be removed from my blood. It will be re-oxygenated and put back in. I will also have to go on medications as they will be adding plasma and healthy blood to my body. 

The doctor will use this as a treatment and a diagnostic tool. I will also change medications to Northera. I will be taken off midodrine. He is hoping less seizures and passing out. More energy and less debilitating pain. I'm hopeful. 

From there we will evaluate and continue to change and modify meds and treatments. 

Without treatment, I will not be able to hold on much longer. So I'm grateful for options. I was so scared. It is so scary to feel yourself literally "dying". Each day I am weaker and worse than the day prior. Each day I have been fearful of my last days. I try hard to say what i want said and am careful about making sure my relationships are in order. I can feel my life slipping from my body. It's frightening yet I know death would be an end to the pain and torment. But I can't bear to say goodbye. 

I will fight. I will try. I will give my all. I will do whatever it takes. Absolutely whatever. I love my family. I love my Savior. I trust my Savior. I know my Heavenly Father lovingly wraps His arms around me. Because of Him, I still live. Because of. Him, I have hope. Because of Him, I will be able to live again with those that have gone before and those that will live after I am gone. But I am grateful for more time and more hope and more help to continue to walk this life. 

I'm praying for a successful treatment. I'm trying to focus on the benefits not the pain and side effects. I ask all reading to please pray with me. I know pray works. I know it is a great blessing. I know I am known by God on high. At that is comforting and gives me strength and courage to keep going. 

Monday, April 20, 2015

This life is the test.

Life is rough. 

"This life is the test" - those five words say so much. I hear them regularly. It is more of a passing statement when life doesn't go your way. But why are we really here? What is the purpose? Why is it that it seems we sometimes just hot one dead end after another? And that the days sometimes feel as if we get punched one more time, we will break. 

I've spent many sleepless nights lately. They have been long and accompanied by indescribable pain. The torment of this disease has me ready to scream or quit. I do all I can to endure. I read scriotures, watch netflix, play iPad games, listen to conference talks... Anything and everything to distract myself from the pain. 

Last night, as I searched for some distraction, the song, "The test" by Janice Kapp Perry began playing in my,mind. I heard the words, "Didn't He say, He sent us to be tested. Didn't He say the way would not be sure. But didn't He say we could live with Him forevermore, well and whole, if we but patiently endure. After the trial, we will be blessed. But this life. Is the test." 

I was taken back to my mom being sick and paralyzed and sitting in the chair with her feet up in the mauve and dusty blue flowered ottoman. She asked me to play this song on the piano. Jake, JD and Jodi gathered around the piano with me. We sang the words. As each word came, I thought of my mom. I looked at her as I played the notes on the piano, ...."well and whole" and thought of her being able to walk a again without help. Of her being able to fully smile without her lips dropping. Her being able to make her own meals and drive a car and take care of us. My heart broke for her. Just as quickly the next words, "patiently endure" rolled off the tongues of the kids. I looked at her sitting in the chair with her arms wrapped around Jodi. She was smiling with tears rolling down her cheek. I wondered what she was thinking. How hard it must be to be in her situation. I saw her signal to keep going. Keep playing and keep singing. Then the words, "after the trial we will be blessed" bellowed out with the piano. I thought of all the good my mom continued to do while she was battling her own living hell. She was helping unite families, she was taking care of others, having me haul her to the hospital to sit with sick friends, and continuing to praise our Savior. And the words that forever stuck with me, "but this life is the test." I thought about tests in my own limited view with watching her endure so much. 

My mom had bought me a picture of Christ with the quote, "I never said it would be easy, only that it would be worth it." As I sat at the piano, playing this song, my mind drifted to this picture next to my bed. Is this worth it? Does my mom think this trial will be worth the joys that lie ahead?

As I sang the second verse and additional verses and it talked of being blind, and why the healing doesn't come when the Savior could just remove the burdens. "Tell me friend. Why are you blind? Why doesn't He who worked the miracles send light into your eyes? Tell me friend, so I understand" I thought of all the good my mom had done. She was the relief society president, worked in the schools, always had extra kids over, took every underdog and struggling mom, child, puppy, and loner in and gave of the clothes off her back. She loved with a perfect Christlike love. Why? Why when she was so good and so Christlike did she have to suffer so much? Where was the justice in that. 

My mom always comforted everyone around her. Her disease and paralysis didn't stop her from doing good, having faith and comforting others. She patiently and cheerfully endured. She never doubted. She hardly complained. She understood deeply that this life is the test. 

As I have walked a similar journey, I have often reflected on how she handled things in relation to how I have handled them. I've tried to have a perfect faith that casteth out all fear. Somedays that perfect faith is strong and other days I too, struggle. The road of life is hard. It's taken everything I have. There hasn't been very much of this journey that has been easy. It's hard. I see why it's called "a test". It's not any test but the doozie and the final. Everything is riding on it. There are no do-overs. We have one shot. 

Oh how often I feel I have failed. I've wondered if it is worth continuing with the test or if it's all in all better to throw up my hands and retreat. But I am taken back to this song. 

As a youth, I had no idea why the Savior wouldn't just work miracles like He did so often when He walked this earth. I knew my mom could do so much more good if only she were well. And I needed my mom. All of us did. Weren't me and Josh, Jake, JD and Jodi worth the Savior healing my mom? I had more questions than answers. 

When I now look back on those precious and tender moments of singing and playing the piano, I am grateful for he important gospel truths I learned from my mother. One- trust the Savior. Always.  Two- this life is the test. That's all. Tests end. Trials end. Life ends. It's all temporary. Have a good attitude during it. Three- take care of on another. Fourth - there is no room for bitterness. Fifth- take life and find the good - there is always good. 

My heart breaks for my mother. I can only imagine the thoughts going through her mind as we sang knowing that her days with us were numbered. That she must teach us so much in a shortened time. 

Now, I sit in a similar situation. Each day, I try to teach Hayden all I can wondering if the opportunity for me to teach him whatever tidbits of knowledge on the subject will be my last. I identify the spirit wondering how many more times I will be able to do so. I wonder if I will be able to have one more discussion on the deadly effects of pornography or why it is critical to wait to use the procreative powers for marriage. I try to impart of all my knowledge prior to me no longer being here to do so. 

I try to anticipate his questions. I tell him things like my favorite color is: turquoise. But yellow makes me happy  it lifts my mood. My favorite songs are ones that invite the spirit. I love who he is becoming. I am grateful for each day on earth with him. I talk to him about his future wife and my grandchildren. 

Most of all, I hope he knows how much I love him. How grateful I am that I was chosen to be his mother. What a great honor I feel in this sacred calling. How not one day has ever gone by that I have have not taken the opportunity to give thanks for him and the blessing of being his mom. I tell him all the good qualities of his dad and how he is like him. I tell him that success is being. Wonderful husband and caring father. That being a worthy priesthood holder and honoring his priesthood matter more to me than any worldly honors he could achieve. I teach him that the plan of salvation is real. There is life after death. That loved ones that have gone before continue to help us, we just no longer see them. I assure him the gentle breeze across his face will be me stroking his cheek ever so gently and kissing him lightly. I will be cheering him on. And most importantly, the Savior knows Hayden personally. Better than I know Hayden. The Savior loves Hayden infinitely more than I do even if I cannot understand it. That He is as close as a prayer. And he can never walk too far to come home again. 

It's hard to guess which life lessons I need to prepare him for. I have tried to teach him how to find answers and where. Prayer. Scripture study. Temple attendance. Meditation. Bishop. Conference talks. Fasting. Listening to the spirit. 

It's hard to have moments like listening. To the song, "the test " and staying strong when I'm not sure how much longer I will walk this earth with him. It breaks my heart. I wonder if it was this hard on my mom to say goodbye to all of us- to me. 

My world crumbled when my mom died. I don't want Hayden and Thomas' world to shatter. For them and the love of my Savior, I keep fighting. But, in my very human moments, I'm scared and afraid that they will experience the heartache I faced. 

And I am afraid I will miss them terribly. And although I understand this life is merely a test. That it is hard. That we were sent here to be stretched and tried and tested. I'm sad. I don't want to leave them. I'm willing to sty here in a body that is riddled with pain and dysfunction. That doesn't work how I want. That keeps me up all night in excrutiating pain. That struggles to walk from one room to the next. And nights like tonight when I just cannot get enough oxygen to keep me breathing, I plead for more time. More time to assur Hayden he is loved. More time to teach him of our Savior. More time to bear my testimony. More time to just be with my boys. 

I'm grateful for the knowledge I have of the plan of salvation. That whatever happens I will see my mom again. Death will be sweet as I will hug her and cry in her arms. And she will teach me to navigate the spirit world just as she taught me to walk and talk, dance and sing here on earth. I pray Hayden will always stay close to his dad and our Savior. That he will remember how much his mom loved and utterly adored him. I plead with my Savior every day for these gifts. And that he will remember that it won't always be easy but it will be worth it. 

Thursday, April 16, 2015

My comforts

Tonight, as I decided I could no longer bear the pain and needed to move rooms, I started to head for the couch. I could tell my tossing and turning was waking up Thomas. Poor guy. He needs sleep. 

Maxwell, came over, laid his head on my lap. Maya also curled up on my leg. All of a sudden, I wasn't alone facing another night of unbearable pain. 

I thought of how we got the puppies. I thought we were getting them for Hayden. How wrong was I. These pups have been one of the greatest and tenderest blessings from my Savior. 

As I thought further I realized that because of them, I do not face some of my scariest moments alone. They are there as I go into seizures, lose consciousness, struggle to endure the pain and just survive the sleepless nights. Furthermore, if my Savior cared enough to send me a constant reminder that I am never truly alone, how much more does He sit with me. He holds my hand, strokes my head, helps me endure and calms my fears. He faces each long night and each miserable day with me. He never makes me walk it alone. He sent these pups to me to remind me. He is always near. 

Instead of feeling discouraged that my feet and hands are stabbing so bad that I can not escape into sleep, I am grateful for the knowledge that I do not walk this night or any other pain filled day truly alone. There are countless seen and unseen angels bearing me up and carrying me along this journey. 

The pain may not end. Relief may not come. But I am not abandoned. The Lord, my Savior has suffered all, and I will walk where He asks me to walk and go where He asks me to go. Knowing the where He sends me, He will already be preparing the way and lining the road with angels and friends, family and puppies, loved ones and selfless saints to help me on my journey. 

So although the suffering is real and long, I will continue to endure and try my best to "submit cheerfully to all things that my Lord, my God, shall try me with". I have so far to go. But I will not give up. Someday, He shall extend His arms out and welcome me home by saying, "welcome home my daughter. Enter my kingdom and find rest." And in that moment, the pain will end, the test will be over, the journey will have been worth it and I will find comfort and peace in the loving arms of my Savior. 

Saturday, April 11, 2015

My thoughts

This morning I awoke and did what I should do everyday when I struggle. I turned on my favorite Jenny Phillips cd, took a hot Epsom soak bath with all of my pain relieving essential oils. I relax as some of the pain decreases and relaxes. I say a prayer of gratitude for the temporary relief. I no longer ask for full relief. (Ok. Once in awhile and I would gladly welcome it) but for relief enough to be able to bear the pain and this burden. I feel such gratitude when moments like this morning, the pain lessens. 

I decided to leave the music on while I read my scriptures this morning. I couldn't turn off the pleasing music, comforting words and tangible spirit I felt. So, I turned down the volume so I could still read and think over the volume. I picked up my Book of Mormon and turned to some of my most treasured and reassuring verses. 

As Mormon counciled Moroni of the utter destruction and sheer disregard of the people for God, I felt the ways I could be better. That I could exhibit more faith. That I could be more patient. More loving.  More Christlike. 

I continued reading and my heart filled with overwhelming peace and comfort. I also felt the Spirit talk to me as to how I can be better. 

Than I read in Moroni and was reminded of important truths. I found overwhelming comfort as I read  Moroni 9:22 and heard the precious words, " I pray God will spare thy life". I pleaded for my life to be able to continue. I continued my reading and my heart again leapt when I read the words, "Jerlyn (or technically My son) be faithful in Christ.... May Christ lift thee up". 

As I continued into the final chapter of the. Book of Mormon, Moroni exhorts us to do certain things to come unto Christ and teaches us how to live. He tells us to read, remember, ponder and pray. He exhorts us to not deny the power of God. And that we do not deny the gifts of God. We need to remember all good things come from God and to have gratitude. To remember that God is always the same and unchanging. To remember the time of God comes soon. And to Come unto Christ and lay hold of every good gift. 

I read and re-read these verses. I made a mental note of where I stood on each and where I definitely have room for improvement. 

Most importantlyv I allowed he spirit to teach me. To comfort me. To bear witness to me of the truthfulness of these things. 

I don't know why me being confined to a disabled body is best for me, my husband, my son and for the furthering of. Christ's gospel but I do know it is. 

I may not always see things as clearly as they are but I have learned so much. 

I am much closer to my Savior. I hear. His voice. I love Him. He matters more to me than anyone else or anything else. 

As I read the gifts that come from God, I was able to reflect at how many blessings I have been given and my family has been blessed with. What beautiful gifts we are given... Manifestations of the Spirit of God, ability to teach words of wisdom, ability to teach word of knowledge, to have exceedingly great faith, gifts of healing, ability to work mighty miracles, to prophesy concerning all things, be holding the angels and ministering spirits, the gift of tongues, interpretation of tongues, and to know that every good gift cometh of. Christ. 

I have been so blessed. 

If I make a list of my earthly blessings, I feel although I am greatly blessed, I come up short. I struggle with my health, financial struggles, trying to desperately figure out how to do our obligations, losing our home, and the list goes on. 

But, if I judge my life based on the gifts of. God and His blessings, I feel so richly blessed. I have felt the ministering of angels. I have been the recipient of so many miracles. I have felt His redeeming love and continue to do so. I have received knowledge that our Savior lives. I have experienced such hope, such love and such comfort that I cannot deny that my Savior walks with me. That He is aware of me, Jerlyn,  his daughter. And. He loves me. Jerlyn. 

I feel so much gratitude. I feel such peace. I feel overwhelmingly loved and cared for. 

As I look back on my lists. I'm grateful for the latter. I wouldn't trade the spiritual and eternal security for temporal security. I wouldn't trade heavenly blessings for earthly ones. I wouldn't trade financial security for the precious gift of knowing my Savior. How much would I give up to have experienced the miracles and felt the power of Heaven bring my body back to life. These gifts are priceless to me. 

So although He asks me to bear horribly hard earthly challenges. Where we have not been able to find any security whatsoever. He grants my spirit peace and security. He loves me. He knows me. He cherishes me. And someday, I will again be wrapped in. His loving arms. I will find refuge and find peace and hope and comfort in knowing I am His. 

It's a true gift when nothing changes yet everything changes. By keeping the commandments and following our Savior, and picking up my scriptures, nothing changed but everything changed. My circumstances are the same. But now, I feel overwhelming gratitude for what I've been given. Just simple joy.