With all of the doctors and testing that has been going on, life feels more fragile these days... but to catch up on the journey, I need to go back to the beginning of one of the most trying and heart wrenching weeks of my life.
Last week, Thomas and I anxiously awaited the call from our new neurologist that insurance had approved treatments and we could start on the next immune system reboot or IVIG treatments. Thursday morning brought the much anticipated news. The attorney had sent a letter to the insurance company demanding response with approval to treat or an entire list of why they were denying treatment, and they had only five business days in which to legally respond. The clock was ticking and we were ready to move forward. The doctor assured me that we would be approved and that treatments would begin the following Friday or Monday. We braced for the journey and were relieved to finally know that although the storms of life would get fiercely worse for a season, but the calm was just beyond the storm. We held on and felt ready emotionally, physically and spiritually for the ride.
Late Friday afternoon a call came in. I took a deep breath assured that here was the call and I would be given the schedule and we would begin the next phase of this journey.
Imagine my surprise when instead of approval as we all expected, to get the call that the insurance company had denied treatment and would no longer support medical treatments for me. What? Did I hear that right? Ok, lets go over what I just heard. I braced and again listened as I heard the words, "risk benefit analysis" and "maximum benefits" and "your life not worth the money" and other fun phrases.
I gasped and literally collapsed. Although I was not looking forward to the treatments, I was anxiously awaiting the results and relief the treatments would bring.
I dropped to my knees. Thoughts and emotions swirled in my mind as I tried to make sense of the words I had just heard. And it basically boiled down to this, "my life was not worth saving" and "too sick for treatment" followed by, "they do not think the risk is worth it as I will not survive" and "how is it possible that an insurance company is allowed to play God and determine who lives or dies verses approved treatment".
As the information sunk deeper and deeper into my heart and weighed so heavily on me, I simply collapsed. How do I relay this turn of events to my husband and son or anyone else? And then I felt like someone punched me in the gut.... and this terrifying thought crossed my mind of "is this the end? Is this how it all falls apart? Is death imminent? I collapsed to the ground in the ugliest of sobs.
After pleading with my Savior for peace and hope and any emotion besides sheer defeat, I called my precious husband. Together we shed a few tears, bore testimony to one another that the Savior must have another plan and ended the phone call in prayer together. The ultimate despair faded to numbness. A complete and utter void of nothingness.
Honestly, that night was a blur. I went thru the emotions but wasn't present. I prayed for the ability to just hold it together until Hayden was in bed. Regardless of how I was feeling, I could not allow my dear son to see his mom give up hope or treatment options.
I collapsed in Thomas' arms once Hayden sought the comfort of sleep. We prayed. We talked. Thomas promised he would continue the fight to get me treatment. He also sought the direction and guidance of our Savior.
Saturday morning, I awoke with swollen eyes and a massive headache.. at a complete loss as to what to do. I called my sister. She told me to come over. Her and Troy were speaking in church the next day and we could go with them instead of facing those wanting updated news. We decided to attempt family pictures, even though my hair desperately needed to be dyed, we didn't have any "matching" clothes and I even had swollen eyes. How could we pull it off? I quickly pulled a few things together hoping they would suffice. I took a nap so I could survive the drive to Glendale and walking around for family pictures.
Luckily I slept on the ways to Jodi's house. The throbbing of my head subsided, and I quickly said a prayer of gratitude, grateful for even the slightest reprieve from any torment.
We laughed during family pictures and had fun being together and laughed as Hayden and Brooklyn acted like teenagers together. I smiled, and made a mental note at how grateful I was for all those in Hayden's life. I felt a wave of peace. I tried to just stay in the moment without focusing on the problems and the future. And although, I didn't last long because of the horrible throbbing of my foot and incoming migraine, I still thoroughly enjoyed each moment with my husband, son, sister and niece. I took a deep breath and finally began to smile and enjoy myself.
Troy and Jodi, lovingly and generously, took us out to dinner to a Japanese restaurant and Troy convinced me to try sushi and I liked it. Life felt weird and peaceful and absolutely drained all at the same time. I came home ready for bed. I was beyond exhausted and prayed I could find some relief in sleep. As life often does, relief doesn't come how we want or expect, but in surprising ways. I didn't sleep at all, but found comfort as Talmage and Brigham each snuggled up beside me in Brooklyn's bed. I soaked in their joy and love and thanked God for these precious boys.
Sunday brought unbearable heartache and sadness and utter and complete despair. I cried or rather sobbed the entire day. Nothing could console my broken heart. I looked in the mirror and said aloud, "How do I tell my son that the insurance company would rather me die than pay for treatment or help. I am deemed unfit to live. Not worth saving. Not worth it." I will admit, I was at an entirely new level of low.
I couldn't go home and face this alone. I needed my sister and the distraction of Brooklyn, Brigham and Talmage. I needed to have Hayden focused on cousins, not me. Monday was again a blur of just trying to contain my emotions without completely falling apart.
Needless to say, we are just frantically trying to keep our heads above water. Tears fall freely and often. We struggle to talk about it, as both of us are trying to cope and listen for any guidance from the Holy Ghost and Savior. We do not know where to turn, what the options will be or what the future holds.
What we do know is that our Savior comforts us in our trials. He does not leave us nor forget us. He has sent His comforter to protect our hearts and minds from the fiery darts the adversary is shooting at this time. I know He is with me on this journey. I know somehow and someway, He will help us walk the path that is mine to walk. Thomas and I are pleaded for answers, searching anywhere for options and handing all of it to our Savior to sort out and help guide us with where to turn next. We would be grateful for all prayers in our behalf as we get ready to face some very complex and scary decisions.
That night brought on another sleepless night filled with excruciating pain and unbearable sadness.
Wednesday, March 11, 2015
Yesterday was tests. I walked in and listened as they discussed the tests I had previously taken and the additional ones I would be given. I felt a calm embrace me. No anxiety. No fear. No apprehension. Simply peace. I said a quick prayer in gratitude. I thought back to the hundreds of previous tests and the anxiety that would engulf me. I said another prayer of gratitude. As I did, more comfort and peace came.
I talked with the nurses and students calmly and precisely. I followed their instructions as they hooked me up to sweat tests and monitors and began the testing. I was in awe of the peace.
For the first 20 minutes, I was hooked to an autonomic sweat test. As the liquid was poured in and the burning and needle pricking began, I just felt peace. I thought of how Q96 has blessed our lives. How much more in control I am of my thoughts. I gave thanks for comforting priesthood blessings. I felt such gratitude for my Savior that wraps me in His love and blankets me in His peace. I felt a heart bursting over with gratitude for all I have been given.
This road of poking and testing, illness, sickness, bedrest, passing out, seizures and so much more has not been an easy road. It has pushed me beyond any humanly limits. I have walked the edge of despair and exhausting pain.
However, these trials have given me so much more. For in walking each moment in such torment, I found the only one who could help me. My Savior.
Sure. We were close before my illness. In fact, I would have said I was dear friends with Him. But in walking my own path, I have come to know my Savior, on a much deeper and more personal level. I know He will never leave me. I am His precious child whom He loves. He is immediately there for me. I matter to Him. I'm so grateful for that relationship. And the joy and overwhelming comfort it brings.
As they proceeded to do each of the five sets of tests, I remained calm. My breathing kept time with the bouncing ball. I smiled when they had to get heating pads to get blood flow into my extremities. Then came the dreaded tilt table test. I hate the feelings and stress that comes.
They strapped me down to the bed. I couldn't feel the strap across my legs. And up I went.... Instantaneously the headache started and the fullness on my head began. Then the lightheaded ness set in... Soon the dizziness... The flickering lights.... The bouncing room. As I continued to click down time, the nurse told the student how to write down my symptoms. Then, the shaking started and the tremors. I saw the nurse grab the clipboard from the student and frantically write. The intense light sensitivity stared and the pain behind my right eye increased. I could hardly open my eyes. The nauseau was hitting almost unbearable. The room continued to spin and move. Then I could no longer feel my feet as they went numb.
I was so relieved as they laid me back flat. The intensity in my head continued. They told me I had to lay down until my system reset and my symptoms were gone. I told them that they would continue for the next 24 hours. So they let me go. I needed to eat protein to ease the symptoms. Fasting wasn't helping my symptoms.
They let me go. I was so relieved to have the testing behind me. One step closer to relief. I was thrilled to be able to go back on my heart meds. The day made me sicker as my body tried to readjust to meds and the testing. I spent the rest of the day in bed or the bathroom so so sick. I was grateful for relief of bedtime and being able to sleep.
Regardless of the pain and sickness, the peace remained. I felt a calm reassurance. All is well. I don't know if that means the doctors would figure out what is wrong or if that meant the tests would convince insurance to pay for treatment or if the testing would give hidden clues we have log been searching for. Regardless, I knew that the tests had done their job. I knew I was protected. I knew that all was well. Regardless of the outcome or results, this was in my loving Father in Heaven's hands. And He was wrapping His loving arms around me. I am His. And therefore all is well.
Tuesday, March 3, 2015
Meet my sweet and precious new little niece, baby Ashlyn. JD and Cassie have a cutie. That's for sure. She is so precious. So so so so precious. I fell in love immediately. Her smile. Her face. Her sparkling eyes. Her joy. Her sweet little fresh spirit from Heaven. She warmed my heart and brought peace to my soul. Oh how I love her.
Ashlyn, named after her Aunt Jer, of course, is the smiliest baby ever!
Sunday, March 1, 2015
Hayden went to see the heart surgeon on Friday. We were all geared up. Ready for heart surgery for my boy. Then we talked to the surgeon. Great news. The surgeon does not want to do surgery now. It is too complicated. Too risky. Instead he thinks he will eventually grow out of it. That his body, his chest bones and ribs will envelope his wires that are exposed. In the meantime, he will be limited on physical activity due to the cartilidge pain involved. We are to treat with ibuprofren and Tylenol.
We are so happy. Thrilled. Relieved.
I'm so glad he doesn't have to face surgery right now. We feel this is a tender mercy from our Savior. He loves us. And knows right now, we are too overwhelmed to face this trial.
Our Savior loves us. He is so good to us. He is so kind. He knows our limits. And He helps us. I know if we were required to walk that road, He would have carried us. But I am so grateful for his tender mercies and love. And I am so happy for my sweet boy and pray he will find relief with medications instead of surgery. Feeling so blessed.
How is it possible that anything a doctor says could surprise me after the past four years? But it happened and I was absolutely blindsided at the doctor this past week.
Let me back up. A couple of months ago, I heard about this amazing doctor who dealt with my disease. He had been able to help so many lessen their symptoms and have a better quality of life. I couldn't wait to get in to see him. I allowed myself to hope. I allowed myself to imagine being able to once agin do some normal things once obtainable. He asked me to bring a list of my three greatest complaints to see if I could minimize my symptoms. I was so hopeful for some relief of the awful autonomic dysfunction symptoms.
I eagerly went to the appointment and was excited to meet Dr. Levine. We talked. He read my files. He pushed his chair back and crossed his legs. He took a deep breath. I hung on his every word ready to find some relief. He smiled a half smile at me as he explained I was "complicated". A little hope died but I was still eagerly hopeful for help. Instead, he explains the disease. He explained that certain varieties of the disease had no,treatment and no chance for relief and there was nothing known to help ease the disease or stop it. My heart froze. Then he continued... With my symptoms where they were currently at, my vascular system was shutting down. My arteries and veins were no longer pumping blood to my extremities which was causing the sensations of my,blood itching and the excrutiating pain in my legs and feet, the cramping, and my struggle to breathe. More words were spoken as I felt the hope fled from my heart. Then, as if that wasn't a hard enough conversation to swallow, he added that where I was currently at with my symptoms, my body could only probably survive another 4-6 months.
I fought hard to fight my emotions as I looked at Dr. Levine. His mouth was still moving and words were coming out. However, "4-6 months.... Nothing more we can do..... It's so complicated.... We don't understand.... 4-6 months.... Nothing more.....no relief" radiated in my heart and head. I was deflated.
I told him I felt better than previously. Yes. It is true. The above symptoms were causing struggles and complications but still not as bad as I once was.
We discussed a treatment. Experimental. No results as to why it works but they have had some success. It was extreme. Complicated. Extreme. I asked what. I'd try.
He explained a high dose combination of IVIG and other medications, highest allowable by law, for 3 months, consistently given, may get my body to "give up" where the autoimmune is hiding and they could identify the type of autoimmune disease. He said it would take me surcombing to almost an inch of death to trick my body into giving up what has taken over in my body. He said I could expect to develop meningitis and be miserable. The treatment had a success rate of 10%.
Here we go again. I found myself agreeing to the treatment although part of me wanted to scream. So many emotions and feelings went thru my head and heart. I saw myself enduring the first experimental,treatment at Mayo Clinic. I had meningitis. So so sick. Almost died. Then the next treatment where I was so sick but handled it much better than the first. I felt that I was spared the first time. The second I had dr Shiflet and essential,oils to help me thru. This time I also had Q96. I would be spared. My life would be spared again. I felt peaceful.
The doctor spoke. I could no longer hear his words. I fought back tears as he explained he would contact Mayo Clinic doctors and the insurance company. He would schedule me for tests once insurance was approved. He would get me in for autonomic tests. Then start treatment. I would come back in at the end of treatment for additional testing to see where my autonomic system was at and undergo testing to see of they could locate the autoimmune disorder that was unidentifiable at the moment.
I fought hard. I set my next appointment. I walked to the waiting room and out the front doors. I could no longer fight back the emotions. All of the hope and eager anticipation fled from my body. Fear and loss and hopelessness replaced all emotions. I felt absolutely defeated. How much longer must I endure? How much more must Thomas and Hayden continue to suffer because of my illness? How was I supposed to homeschool Hayden? Could I survive the treatment? 10% chance. 10%. 1 out of 9 chance of death and failure. I could barely breathe. My heart broke. Completely.
I cried or sobbed to Jodi not knowing how to tell my dear husband. She encouraged me. She gave me the strength to tell Thomas. My husband was inspired and knew exactly what to say. He assured me that the odds were not too great for our a Savior. He assured me that the Savior already knew my illness, my autoimmune disorder, my weaknesses and more. That I would be spared and protected by our Savior.
I calmed down but was beaten down still. I got home and collapsed. I cried into my bed. Sobbed. I was blindsided. Broken hearted and blindsided.
I will fight this I will give my,all. I will trust my dear Savior. But I really hope that someday I will find relief from this illness. Unfortunately, I know relief will only,come in the form of death and escape from this life. Instead, I pray I will be able to endure. I pray I will be able to handle the pain and disease inflicting havoc on my mortal body. I pray my Savior will continue to walk with me. To guide me, help me and keep me safe always.
Sunday, February 1, 2015
Hayden always laughs that I say, "Not my circus. Not my monkeys" in response to the craziness in the world around me. So when I got to where I felt like I was running in circles and ready to pull my hair out, Hayden said to me, "so, why are you going crazy? It's not your circus and not your monkeys, so why do you care?" I hugged my boy and told him unfortunately this time it is my crazy circus and all the crazy monkeys running around are mine to conquer and tame. He responded, " oh Boy. It must be bad if the entire circus and all the monkeys are coming after us." I hugged my boy. Sometimes all I need is his sense of humor, his joy and his love to pull me out of going completely hairy carry.
Yesterday we celebrated the birthday of someone I love and adore. Suzi and I have been friends since way back to the days of college roommates. She has been apart of my crazy life since I came home off of a mission, many many moons ago, almost 20 years. We have worked at the same jobs, had the same fun crazy roommates, she has been there as I met and married my husband, sat at the hospital with me when Hayden was in surgery, we have been on numerous vacations together, she has cleaned my house and made us dinner, she has been a second mom to Hayden and helped us more than I could ever express.
Suzi is more than a friend, she is family... The very best Aunt Suzi ever. As these pictures clearly show, she is loved and adored by all the nieces and nephews. And I love the picture of her with Hayden and Tman. Their faces show the love that all of us have for her.
Suzi has walked this illness with our family. When this journey began, and I miscarried twins and was so sad and sick, she booked a trip for us to Hawaii, paid for it and watched Bubba while we were gone. He became so sick that he almost had to be hospitalized. She took off work and cared for him like her own. Little would we know that just a few short months later that I would endure this illness and spend the next three plus years fighting for my life. I have gone to that happy place of me and Thomas sitting on the beach watching the waves roll in and out, more times than I can count. It was a time for. Thomas and I to reconnect and to spend precious time together. I cannot express the gratitude I have for that generous gift during this trial. It has made such a difference.
Her generosity has reached far beyond that amazing trip. She has paid for cleaners to come in and clean our home for three years while I couldn't do it and to take the load off of Thomas. She has paid for Hayden to get many therapies and treatments he has needed like brain mapping. She has sat by my side and read to me.
Aunt Suzi has been a lifesaver. I remember when we were trying to adopt. We were explaining to Hayden that there were kids without moms and dads. He piped in and said, "it's ok mom, they may not have moms and dads but their aunt Suzi's will take care of them!" I went on to explain that they didn't have anyone. He said, "we need to go get all those kids. Life without an Aunt Suzi would be awful." I could post a picture of every child's face showing the same look and I am certain each one would agree that life without Aunt Suzi would be dull and boring and not the same at all.
Yesterday we celebrated by going to see he movie Spare Parts and how one teacher changed lives. It was fitting. Our lives are better because Suzi is in it. She has made a positive impact on all of us. Our lives are better because of her.
I smiled as I looked over during the movie and Hayden was leaned into Suzi talking about something. And smiled even bigger when Tman spontaneously jumped on Suzi's lap, hugged her and told her he loved her. Then, as we sat in Cheesecake Factory, she was the cream filling between Hayden and Talmage again. They both were talking non-stop to her and laughing. She took turns playing rock, paper and scissors with. Talmage and talked to Hayden about favorite things. I smiled. I sat there with my sweet sister, Jodi and my adopted sister, Suzi and thought how very blessed I am.
Happy Birthday, Suzi! We love and adore you and are so very grateful for the gift of YOU!