Neurologist Response

The next day, I received another call from the neurologist, was I sure that I understood that the risks were approximately 70% death? I expressed that I cannot continue to live with my body shutting down on itself and killing itself, one day at a time. My husband and I agreed that the life I have now, is not the way we want the future to look like. We understand the odds and feel good about going forward with treatment.

The Neurologist explained that there was no data out this far. No one else, as far as they knew, that had my condition, without immediate treatment at onset, had survived. They did not know the odds.

I expressed to the doctor that the Lord has chosen to intervene and save my life time after time this year in the following situations that we were aware of: I survived my vasovagal nerve being cut, a complete bleed out within my body, my heart stopping, seizures, grand mal seizures, heart rate significant slowing, unconsciousness, falls, organs shutting down and I am sure more other times that I am even aware. My theory remains, if the Lord chose to keep me here in all the above situations, where I was blessed to receive divine inspiration, that I was confident that He would continue to watch over me and bless me as I face this next hurdle and challenge.

As Thomas and I sat in the temple, I opened the scriptures. The first verse that I opened to was Alma.

Alma 31:31

31 O Lord, my heart is exceedingly sorrowful; wilt thou comfort my soul in Christ. O Lord, wilt thou grant unto me that I may have strength, that I may suffer with patience these afflictions which shall come upon me, because of the iniquity of this people.

Then, this scripture:

Alma 34:41

41 But that ye have patience, and bear with those afflictions, with a firm hope that ye shall one day rest from all your afflictions.

And Finally this one:

Doctrine and Covenants 75:11

11 Praying always that they faint not; and inasmuch as they do this, I will be with them even unto the end.

As I read these scriptures in the temple, I realized that the Lord had a direct message for me. What my Savior is asking of me is to bear my afflictions and trials with patience and I must continue to endure to the end, whether that is to the end of this trial, or until the end of my life. And, as I do these things, the Lord will help my symptoms to ease. The fainting, the seizures, the miserableness of the nerves being attacked and organ functions being limited are all temporary and all will be resolved in time. It is a temporary state.

All the Savior is asking me to do is endure to the end. As I endure, as I take each step forward in faith, as I try to conquer this illness, He who has walked this road before me, He who has already borne this burden for me and suffered the pains of it for me, He understands the depth of my pain, the agonizes shooting nerve endings, the depth of my hurt.

As I closed the scriptures, I said a prayer of gratitude for the answers that I had received, for my Father in Heaven and His continued presence in my life. I felt the arms of my Savior around me. I felt peace. Not peace in the outcome or the journey, but peace that I would not walk this journey alone. The peace and comfort that my Savior, my older brother, and my friend would walk each step with me, and when the journey gets to hard for me to walk, He will gently pick me up and carry me to a point where I can again walk the road required of me.

What more can I ask for? I have been blessed beyond measure and although I am apprehensive about the treatments, the pain, nausea, headaches and all the temporary ailments that this transplant will bring, I am confident that my Savior will walk this journey with me. I may be weak and unable to do what is required of me on my own, but with my Savior at my side, I have faith that together, this is totally conquerable.

Long Awaited Diagnosis

For months and months I prayed for a diagnosis, an explanation of some sort in hopes of a treatment. Monday afternoon at 4:00pm, the moment that we had been awaiting arrived. As Dr. Goodman walked into the room I could feel that he had a diagnosis, a name for this illness. As he began describing what was happening to my body, based on test results, he explained that what I have is such a rare disorder/disease that there is not yet an official name for it. He personally has treated 8 patients in the past five plus years for this disease. No papers have yet been written, although Mayo does recognize and somewhat understands this disease.

My diagnosis consists of a combination of Autonomic Neuropathy, mixed with non-existence of Catecholamines (Dopamine, morepinephrine and epinephrine), and the breakdown of my central nervous system. He stated that he has only seen this is a couple of other patients and all were treated within the first four months of onset. My onset was a year ago. He explained that we are in uncharted territory because of how progressed this disease has come combined with the longevity of my body having had experienced the symptoms. Not a good combination.

In other words, we were given a treatment option with a disclaimer of he had no idea if it would work or how well. We had two options.... do nothing, treat symptomatically and minimize my discomfort. Or, we can try an experimental treatment. It is an IVIG transplant of my hemoglobin, gamma globulin, and antibodies, etc. I have 10 to 20% odds of the treatment working to stop the disease from progressing any farther. However, with this treatment comes HUGE and SIGNIFICANT side effects including, transplant rejection, kidney failure, aseptic meningitis, and any of those would likely result in death (70% chance) due to my weakened state.

Thomas and I left Mayo Clinic in shock. We found out that my body is literally killing itself piece by piece, nerve by nerve, organ by organ. My body has no idea what is good and useful within my body and what is bad, so it is attacking everything and beginning to shut down organs and all autonomic functions ie: blood pressure, heart rate, pain sensors, swallowing, breathing, internal thermometer, urinating, digestion, heat intolerance and more....

So, we are supposed to choose taking a medicine for each of those conditions, and any others as the pop up or we try to stop the autonomic system with an aggressive treatment that may or may not work and has a huge risk of death.

What odds are those? I am supposed to choose my body killing itself a day at a time, or go get a complete immune system transplant, that in my weakened state that I only have a 20% chance of it working? If it doesn't work.... death, sooner than later. In my mind, this was NOT the diagnosis or explanation that I was so frantically searching for.

Tears were shed on the way home and throughout that night. Prayers were offered, pleadings with my Savior took place for Him to give me some resemblance of peace and assurity that I would be okay. Peace came but not with an assurance of many more tomorrows.

Tuesday evening was spent in the temple trying to receive inspiration from my Father in Heaven and Savior as how to proceed with treatment. Thomas has overwhelming peace that it is all going to be okay. For me, it took time. I wanted some overall peaceful feeling.. instead, I kept being directed back to a priesthood blessing that I had received earlier... wherein the blessing was giving me answers, "it will work and you will be okay". I tried putting that sentence into the different scenarios. Only one worked....if I try the treatment, the Lord has said it will work, and furthermore I will be okay. Good enough for me... I contacted the autonomic neurology office and told them to please schedule treatments.

Instagram updates

Random Happenings in the Murphy home.

A couple of nights ago we had a huge monsoon storm with down pouring rain. We had gotten back late from a doctor appointment and Hayden had waited up... the mood was getting a little too serious, so Thomas picked up Hayden and literally went and threw him out in the rain. It absolutely ShOcKeD Hayden! He was yelling and then laughing... too funny!
Poor boy was soaking wet! It definitely was fun. We all laughed and laughed about it!
Game night at our house.... we saw The Odd Life of Timothy Green... great movie. At night, Suzi, Katelyn, Brigham and Talmage came over to play. We played Sorry, Zingo, a new Farkle game, ate McDonalds and ice cream sundaes. Fun night!
Legos, legos, legos and more legos... there are constantly legos being played with at our house. They are everywhere! I sure love the creativity that comes from a mere box of legos.
Talmage... what can I say??? This boy brings so much joy and happiness into our lives. If Thomas wants me to stay down, he asks to borrow Talmage. Talmage will cuddle up and watch a movie and I no longer have the desire to do anything besides sit. Love this boy!
Ever since Brigham taught Talmage to do goofy poses, we hardly ever get a real one our of him, he consistently poses. Too funny!
Speaking of crazy poses... Hayden sticks his tongue out all the time. I don't think Suzi is getting far with Hayden's homework right now.
Cuddle bug with Uncle Thomas. Have I mentioned how much we LOVE cuddling with Talmage?
Last Sunday Hayden pulled out the swords. I commented that I didn't know if that was appropriate Sunday behavior. Hayden quickly added, "Ummm Mom, do you think Nephi was gentle and quiet when he killed Laban or aggressive?" Ok Hayden... you win.
Of course, Talmage, being one of the "big kids" had to get in on the fighting action. I will say that he "dies" better and funnier than any of the rest of them!
We still have lots of fun at our house~ luckily, the kiddos are still visiting me. I absolutely love when our home is full of people, laughter and love!

The influence of one

One of my dearest friends just told me she is moving to Cali. I am so sad. I am going to miss her terribly. We went to lunch today and just talked and talked. I think we could talk for days and never run out of things to talk about. She is an amazing person, one that I look up to and admire so much.

As I have reflected on mine and Marla's friendship and how she has influenced my life, I am amazed with the power of one person.

Marla has changed my life for the good in so many ways.

She was first Hayden's cub scout leader, an incredible one that loved Hayden and encouraged and supported him.

She introduced me to Dr. Shiflet...Priceless.

Frankie, Marla's son, and Hayden have become great friends.

Marla has been one of the people I have been most honest to about my health and feelings and she has loved and accepted me and encouraged me and believed in me... always!

Marla has taught me so much about service and love and giving and caring and the power of genuinely listening. She has taught me that one person can change a life for the better in so many ways.

Marla makes me want to be a better person, be better at my church callings, try hard and embrace life more.

She is a true treasure and one of the greatest blessing to come into my life in the past 2 years during my trials.

I will miss my friend but am so happy for the incredible opportunities that the Lord has placed before her. When she was telling me how it all just fell into place, I could see that the Lord was answering her prayers. He was providing her with all the great blessing that she so deserves.

I keep focusing on all the great blessings unfolding her life and I couldn't be happier for her. I will miss my friend, but am so grateful that the Lord is providing her with all the blessings that she has been praying for for so long.

I am reminded that when we put our faith in the Lord, trust him, do what he has asked that he provides blessings and opportunities that are amazing. I see the Lord's hand in Marla's life and am so genuinely happy for her. I am encouraged and reminded how the Lord can and does the impossible and brings miracles into our lives in the most astounding ways.

I will miss you Marla, but know we will always be friends. I cannot wait to hear how all your blessings continue to unfold as you set out on this new adventure.

Grand mal seizure fright

Thursday was honestly probably one of the most frightening events of my life. As I walked into Dr. Shiflet's office, I felt a seizure starting to come on. My right eye started flicking and the pain behind it started building. I did all I knew how to do to keep it from coming. After a few moments, the symptoms were increasing and pain worsening, I got up and headed for a table to lay down on and pulled out my cold laser. A few seconds, I could hear Dr. Shiflet's voice and stood up to talk to him.

Bad decision. I started into a seizure and went completely out. According to those with me, Dr. Shiflet and Kaitlyn caught me and got me to a chair. I went into a grand mal seizure and was completely unconscious. Dr. Shiflet adjusted my atlas, used an ice pack, red and green lasers and did whatever doctors do in these situations. My pupils went black, my heart was beating rapidly out of my chest and I was completely unconscious. From what I am told, I then proceeded to go into a second grand mal seizure... eyes rolling back behind my eyes, large jerking movements everywhere, and complete loss of consciousness.

This episode definitely took me out the very longest, taking over an hour and a half for me to come back to complete consciousness, for my pupils to go back to normal and my heart rate to settle down. More worrisome is that during this event, I could NOT tell you my name, how to calculate simple 2 + 2 equations or come up with other simple answers.

Dr. Shiflet was absolutely relieved when I finally began to respond and my body started to go back to its normal state. He talked to me and said that although I had been going to him for the past six months, that he didn't even realize what bad episodes these had turned into. It seems that each time I go in for more testing, more nerve stimulation, biopsies, tilt table testing that whatever is happening inside my body goes on fast course for utter rebellion and my body tries harder to fight against itself. Dr. Shiflet told Thomas that he needed to tell the doctors that they needed to come up with a plan with no more testing..I am not a lab rat but a person that is being very hurt by all of the explorations. Although meant to help, they are causing my body to turn on itself at an alarming rate.

Tears swelled in my eyes as I realized all that had taken place, all the time and love that was administered to help me. All other patients were sent to other doctors, were re-scheduled or waited. Dr. Shiflet did everything he could do to will me back to consciousness and help me remain here on earth. He sat by my side for over an hour and a half to help me, trying to treat me and easing my fears.

In those moments following this event, although hard to put into words, were some of the most tender of my life. For in those moments, I was not alone. I felt encouragement, love and feelings of hope and reassurance, lovingly and gently pleading with me to hold on and helping me to muster all the strength I had inside to fight slipping away. Although my body was in complete disarray and my thinking was completely scrambled, a peace and sheer comfort swept across my spirit and I was comforted. I was not alone in fighting to regain consciousness, I was surrounded by earthly and heavenly angels to buoy me up, strengthen me and whisper words of encouragement that life was worth fighting for.

Exhaustion does not explain the fatigue that followed. Words cannot express the fear I felt when I wasn't sure who I was or what was happening inside my mind and body. I slipped in and out of awakened states for the rest of the evening and night. Emotions flew freely as I felt moments of fear and hopelessness to be replaced with feelings of hope, peace and love and an inner strength.

Poor Hayden, Thomas said that he would keep cuddling up to me and asking Thomas if I was going to be okay. Thomas lovingly reassured Hayden many times that his mom had been given many priesthood blessings that the Lord was protecting mommy and he need not worry. My loving boy did all in his power to make me more comfortable. Although I was barely conscious... so absolutely wiped out, he rubbed my feet, patted my back and readjusted my pillows and blankets for me. It rips my heart out knowing how scared Hayden was.

Even more than the feelings of sadness for Hayden's uncertainty, I felt gratitude that I was still here. Although I was in a semi-conscious state, I was indeed still here. The feelings in my heart far exceed any earthly words to represent their meaning. How do I ever express my feeling of gratefulness and gratitude that I was able to wake up this morning and use words and hugs to comfort my son? How deep is my thankfulness that Thomas and I could discuss Hayden's feelings and together come up with words to comfort him?

No, there are no words that adequately express my heart of thanks. Words or not, my Father in Heaven knows the depth of my gratitude, the devotion of my soul and admittance of my utter reliance of my Savior and for his protection and allowing my heart to continue to beat. The words may not be able to adequately express my love but my Savior knows my heart and my love for Him.

There is no doubt that I will forever remember this day, the lessons learned, the sacrifices made and the tender feelings that were experienced. My love has deepened for my Father in Heaven, my Savior and some of the incredible people that the Savior has helped to place in my life.

I don't think I have ever experienced a sweeter hug than the one I was given by Thomas and Hayden this morning. As Hayden wrapped his arms around me and Thomas came over and wrapped both of us in a hug, I offered a prayer of gratitude to my Father in Heaven that I was gifted more time with my boys and another day to walk this earth and experience all the good that has been placed in my life.

Typical Day

Today was a typical day. We got up late, rushed around trying to get out the door for school and work. It doesn't matter how hard I try, me and mornings no longer get along. I am so tired in the mornings and my speed is turtle speed, at best. Hayden loved his easy, carefree summer mornings of no rush. Those are now gone and we are adjusting to real life again.

Julie was kind enough to drop me off at work on her way to school. Thomas took Hayden to school after we spent a great amount of time trying to help him understand different narrative voices.

Julie and I hit QT for my morning Diet Coke run before she dropped me off at my dad's house. Work was uneventful. Jodi called and picked me up a little early, we swung by Sonic for my next Diet Coke and headed to make the rounds of picking up kids. First Talmage at the babysitters, then Desert Mountain for Jodi's kids and then to drop me off before Hayden was to be picked up at 3:15.

Brooklyn stayed and played and it was so nice to have Hayden and Brooklyn get along so great. I fell asleep, like usual. Hayden made him and Brooklyn corn dogs for a snack, while I slept.

Hayden had finished all homework and asked if while Thomas was at a business meeting if he and I could watch Green Lantern. I agreed and cuddled on the couch for an hour and a half with my bug. He explained everything to me and loved the movie as if it were his first time seeing it, not his twenty-first.

After a great scripture study on Shepherds/sheep/wolves in sheep's clothing, and some great insights from Hayden. We had family prayer and tucked Hayden into bed.

Thomas and I sat on the couch and talked while he rubbed my feet with my neuropathy medicine. Of course, I fell asleep and we both woke up sometime during the night to turn off the tv and head for our room.

There was nothing unique or out of the ordinary about this day. It has become our normal. We don't go many places. I fall asleep every afternoon when I get home. We stay at home as much as possible. We have a very low key life. Lately, I see the blessings in the ordinary and the mundane. And, for the most part, I have really settled in to our new life. Not the life I had planned or wanted, but one where I get great joy out of just being with my family. For that, I am grateful!

What a Day!

I want Hayden to understand that life isn't all about just parties, celebrations, fun family trips, birthdays and fun times. I need him to understand that life is what happens in between those fun and glorious moments. It is in the trenches that strength is gained. It is in the ordinary that the extraordinary moments are found. It is in the day to day trials of life of learning to overcome and endure that character is made.

Lately, we have had lots of character making moments. Monday was a struggle to get back into the routine of work and school. Work was a rough day filled with seizures, passing out and just feeling downright cruddy. Suzi picked me up from work and took me to Dr. Shiflet to see if he could help me out. I always feel better after he works on my back, do a detox foot bath where my liver and kidneys are dumped and utilize cold lasers to try to minimize the frequency of the seizures. I was in his office for a couple of hours getting all types of treatments. Dr. Shiflet was trying to undo the problems that the last tilt table test caused.

I felt better but was exhausted on my way home. I slept on/off. Joyce picked up Hayden from school and took him to art lessons. She picked him up and met us back at our house. Luckily, Thomas had made enchilada casserole on Sunday so all I had to do is turn on the oven and throw the pan in. I did. Then, coiled on the couch and fell asleep.

Joyce and Thomas said that they came home to me seizing on the couch. The seizures are getting so much worse. Not fun. Sure wish they could get them under control. Thomas used my laser and was able to bring me back.

We were able to have Family Home Evening together and talked about miracles. Miracles in Jesus' time, miracles in our lives and miracles in Joseph Smith's time. We talked that one of the greatest things is that how abundantly we are blessed like in the loaves and the fishes. Not only was it a miracle that so many were fed, but they weren't given just enough to survive, they ate all they could. They feasted. After everyone feasted and ate all they could, there were more left overs than food began with.

I have seen this in my life. I'm not just given the bare minimum of what I need. I am blessed with an overabundance. Blessed with so so much and given so much extra. The Savior is like a parent that wants to bless his children. He yearns to do for us, we just must ask.

A few minutes after 7pm, Hayden was exhausted and begging to go to sleep so we closed FHE and skipped the game and dessert. Right as we ended, we received a knock at the door. We surprisingly opened it to see Bishop Call, Ann and Toni. They came bearing a birthday gift for me. They were sick over my birthday and didn't want to get me sick. How sweet are they.

One of our tender mercies or miracles is the incredible people in our ward family. Our Bishop is such a great man. He is so in tune with the Savior and his will. Such a beloved man. I absolutely adore his wife and daughter. They are so special to me. I was so touched that they thought of me. We enjoyed them stopping by and talking with us for a little bit.

Hayden was definitely sick and woke up a couple of hours later in pain with sinus pain. Poor boy. He awoke, barely able to speak and asked for a priesthood blessing. Thomas gave him one and Hayden was promised healing and relief from the pain. Days later and he is still doing fantastic. He sure has gained a testimony of priesthood blessings and their healing power.

All in all it was a great day. One I want to remember. Not because anything was unforgettable but because it wasn't. It was an ordinary typical day in our lives. The days that I cherish because it means that I am alive and here and still among the land of the living. I hope Hayden realizes that the "good stuff" is the every day relationships, love, communication and friendship shared with family and friends. As I knelt down for bed, I found my prayer full of thanksgiving for all I have been blessed with and all the wonderful people in my life.