Wednesday, November 11, 2015

Another doctor another complication

Today was the appointment that when the dr office called to make it, they gave three stipulations. 1) you must bring a trusted and close supporter with you. We will not talk to you alone. 2) you cannot drive after the appointment. (No problem. Can't drive) 3. Please don't make any plans for the rest of the day as it may be an emotional conversation. Then the kicker was 4) but unfortunately the doctor is booked and cannot see you for here weeks. 

So, I know he surgery and follow up tests were not good or else these stipulations would not be in place. And then waiting three weeks... That's just torture. Although. I knew the results were going to be awful because my body wouldn't even let them preform the tests accurately. So I tried not to think about it and focused my thoughts elsewhere. 

Thomas met Joyce and I at the gastroenterologist. I was so grateful for his support. The doctor came in and asked how I was and how things had improved/worsened since we last talked. I discussed both hospital visits and their relations to my ongoing issues. 

He then said that the results for the tests came back with worse than imagined results. My entire esphogus system is paralyzed. He said that the test indicates that my paralysis is well over 75%. That my active esphogus movement is less than most people's at rest. I can no longer get food from my mouth to my stomach simply by swallowing. I have no contractions. I cannot push it down. The only thing keeping me eating is fluids. The fluids help it go,down. 

Because of the extensive damage and extent of,the paralysis, there is no medication, no surgery and no treatment. How long? Thomas asked. The doctor said, "we don't know. It could be simply months or even a year. But she will lose the ability to eat/drink/swallow and her entire digestive system will shut down." From there, a feeding tube directly to my stomach, , a bag for intestines, and possibly a trach, would be required. 

So I have to sit upright as possible to eat. Every bite requires fluids after to help food go down. I need to eat as liquid/soft/mashed foods as possible. No more meats and hard to eat/digest foods. No raw veggies and more. 

The vomiting daily/nausea/digestive issues/breathing struggles/oxygen issues and waking up with night time seizures all start with this issue. 

I'm grateful for answers. Even harsh ones. Sometimes I question myself. I question if I a, simply a wimp and a baby and don't push myself enough. Then reality hits like today. I may have an illness. I have many. I have some really bad things wrong. But I am not a wimp. I am a fighter. I fight each day. To eat and breathe and control my heart rate. I fight seizures and passing out. I struggle to lift my leg to get it to walk. I struggle to get my fingers to type the right keys. I fight for breaths. I fight to keep going. I fight to live. I am not a wimp, but a fighter. I give my all every day. And although the illness seems to beat me down physically, I will beat this mentally. I will not go down without a fight. 

I'm grateful for caring doctors, diagnosis, understanding, peace from my Savjor, a wonderful,support system, a love husband and son. And so much more. I'm truly blessed beyond measure. My illness does not define me. My belief in our Savior and believing in him and me help me continue this fight. My body may wear out but my will is strong. 

Time for me to learn about this new doagnosis that this doctor thinks may unravel more understanding and even greater complications than my neurological illnesses. Call me Dr Jer. I think it is one title I have definitely earned. 

Friday, October 23, 2015


What a couple weeks it has been. Ever since my surgery and then subsequent testing, my body seemed to quit working. 

Back in September I had an upper and lower endoscopy and colonoscopy. I also had my stomach rebuilt, tears between my esphogus repaired and tears /rips throughout my body fixed and multiple biopsies taken. 

The surgery revealed severe small fiber neuropathy had spread throughout my internal organs as well as my extremities. Also, it showed paralysis of the esphogus and gi tract. 

A little over 2 weeks later and I was back in the hospital for manometry studies of the esphogus system and lungs. The testing was awful. The dr could not get the instruments in correctly. More complications. My body did all it could to remove the cameras from my,nose. I coughed uncontrollably. I swallowed with sheer pain. My,body did all it could to remove it. Fluids came out my eyes, nose and throat while they tried to get as much testing in as possible. The effects caused severe pain and swelling. Rove dudes that should cause my esphogus to dilate caused it to shut off and if it was shut off it opened. Exac opposite of what it should do. 

Ding. Ding. No wonder when I sleep I do not get enough oxygen. And it is why I struggle to breathe on my own. I still am waiting on the rest of the test results. 

Since the testing on Oct 1st, my,body has not been working as it should. I became severely dehydrTed and my body quit functioning. I was in constant contact with my gi dr. They tried everything. From colonoscopy cleanses to enemas to laxatives. No movement. I couldn't eat and I could go to the bathroom. This went on for over 2 weeks. 

I was sent to emergency room by the GI dr. They were afraid of another intestinal blockage. Before we left, Thomas gave me a priesthood blessing. In the blessing I was promised that my Savior would cause the blockage to move. 

Still. Unable to stand I went to Banner Baywood hospital. They ran tests. They talked to doctors. The tried guaranteed to work enemas with no luck. They even did the radiology emergency enema done prior to a car wreck victim having surgery. Nothing. No movement. The doctors couldn't get sounds. Nothing. Paralysis. I was paralyzed. Completely. In my intestinal track. 

I was ordered ER surgery. GI surgeons were called in. No one would preform surgery on me. They all said I needed a critical care team. So although they were admitting me, switching hospitals became the answers. 

After spending almost 12 hours in ER and a miserable night,of poking and proding, they decided to release me. Let me go to my autonomic neurologist appointment. Then I was to check in to Good Samaritan hospital. 

My neurologist was not happy he was not contacted. Paralysis of the intestines is part of my neurological condition. Treating the GI track will never work. The paralysis is coming from the brain. Upon further testing, it was determine my entire parasympathetic nervous system was paralyzed. I was given medicine and 48 hours to resolve before they removed my intestines. Oh how I prayed for help. 

For four days, each day would get a call asking if I survived and bought myself another day out of surgery. Finally things began to move. Oh I was and am grateful. 

The pain was more than I thought I might be able to bear. As the intestines started to heal and start working, the ramifications of the illness continue to cause issues. As I have been so grateful that this issue is resolving, I wish that I could get a small break. But instead, with the parasympathetic nervous system starting up again, the domino effect has hit. Sleeping non-stop. Almost 18 hours a day.

The latest issue.... Kidney stones. 

As I lay in the bathtub last night, I wondered if I am just a wimp or if everyone faces this much pain and complications. As I struggled all evening to try to counteract the lastest symptoms, I wanted to cry. The pain so intense. I wondered if it would ever stop. 

As I climbed in bed, my dear sweet husband set up the heating pad, put on the Voice, began rubbing my feet. Then he helped put essential oils on my back, feet and abdomen to help ease the pain. He rubbed my hands. He held my hand. He sat with me. He was just there. Hayden then asked how he could help. He took both dogs in his room to sleep. He went and got me a drink. He brought me graham crackers knowing they ease the nausea. He pounded on my back. 

I looked at both my husband and son. Yes. I must endure pain. The pain is so intense most days. Some I handle ok. Others,  it brings me to my needs. But my dear Father in Heaven provided me with what I need to endure this trial. A loving husband that cares for me. That is more worried about my needs than his own. That will sit by my side and do whatever I need. He gave me a precious son. One who loves his mom with all his heart. He is so caring. So loving. So wonderful. I am so very very grateful for both of them. I am also surrounded in peace by my loving Savior. He wraps His arms around me. He sends his comforter, the Holy Ghost. He surrounds me with friends and family and loved ones. 

So although this last month has been a huge struggle. And the pain has taken me to new limits, I am grateful for all that I am given and all that I am blessed with. I am blessed beyond measure. And for all the love and support, my life is good. 

Wednesday, October 21, 2015

Rough weeks

The last weeks have been oh so rough... Hospitalization, intestinal blockage, hospital tests, almost had my intestines surgically removed, paralysis of the entire parasympathetic nervous system, unable to eat, weak, sleeping 18 plus hour a day, medication changes, new diagnosis, disability challenges, and oh so much more. 

All I could do is try to breathe, endure the unbearable pain and hold on tight. I prayed with all my might, received many priesthood blessings and held on with everything I had. 

There were so many moments when it became simply unbearable. The weight was so heavy. The trial so difficult. 

Although sleeping and being drowsy was frustrating and I felt so guilty leaving Hayden awake alone, it was a tender mercy and gift. My body would give out under the deep pain, almost slip
Into an unconscious state and find relief in sleep. 

As I am again grateful for the gradual relief I am beginning to feel and the daily small steps towards some relief, I am grateful for the strength given to me by my Savior. 

I've promised Him that I will hold on. Most days lately, that is all I can do. I physically, spiritually, emotionally and mentally cling to my Savior. I beg for him to help me. To give me what I need to cling to him and life. 

So many days I wonder how my body can take much more torment and pain and illness. I began to wonder if the fight is still doable. 

One thing I know.  Not sure how this chapter in my story will end. How my earth life will transfer to the spirit world. But this I promise, I will give my all. I will keep walking. I will keep going. I will keep holding on. I will not quit. I will not give up. 

I've given my all to this fight. I feel the forces of hell and the adversary send their fiery darts and the ways they beat on me. But I have also been lifted by angels. I've been surrounded in love and peace. I've been comforted by the beloved Comforter himself. I've been wrapped and protected in my Savior's arms. The Savior has shielded me from the adversary. He has lifted me. He has blessed me. And with Him, I can do all that is required of me. This I know. 

So when my story ends. Please kno this is just chapter two of my story. I will just be in the next phase. Still
Holding on. Still fighting like crazy for my sweet son, cherished husband and beloved loved ones. I will fight for them always. I will never quit. I will never give up. I'm in this until the victory of good and evil has been won. And although there are days the fight seems impossible and I've given my very last bit of energy and strength, I know I will be strengthen by my precious Savior. He will send angels to bear me up in my weakest of moments. 
I am not alone. I testify with every breath I have that my Savior, my Redeemer, my Protector, my comforter and beloved older brother walks this road with me. And with him, giving up is never an option. For he is at my side. He is beating me up, giving me strength, holding me and giving me what I require to continue this fight. This walk is about so much more than just physical endurance. It is fighting for all that is right. All that is good. All that promised when this life is thru. 

I want to kneel at my Savior's feet and be able to earnestly say. "I gave all I had. I held nothing back. I wore my life out in service to Thee. I did my best to fight a good fight. All that I did, all that I accomplished, everything was because of thee, thy strength, thy goodness. I did my best. Please forgive me of my shortcomings and weaknesses. I desire to be in thy presence."  I know my Savior will stretch out His arms, embrace me, like he has done countless times here. And he will welcome me home. 

Until that great day. Until my battle and fight is ended. I will fight. I will move forward. I will be His. And I will never give up. 

How lucky am I to be His precious daughter! For that, I am truly humbled and grateful. 

Friday, October 16, 2015

Conference - what matters most

When Elder Bednar spoke on disabilities and ailments of aging, he quoted Elder Robert D Hales and said, "When you cannot do what you have always done, then you only do what matters most."

It was as if the Savior himself were speaking to me. 

My heart heard, "you may be limited in what you can do. You may struggle. But as long as you do what matters most, nothing else matters."

I thought to myself. Am I doing what matters most? Am I fulfilling my role here? Am I doing what is most important? 

I thought of homeschooling Hayden in particular. The thoughts came to me. "I need young men who are strong missionaries. I need youth you know WHo they are and WHOSe they are. I need youth with strong testimonies and faith and integrity. I need those that know how to serve. I need those that are mine in deed thought and action. I'm not as worried about incredible mathematicians, but in strong and faithful disciples." 

I thought of Hayden. He is all those things. I thought of our homeschool. We talk of Christ, we rejoice in Christ, we read scriptures, we serve and love. We may not do all that we once could but we definitely concentrate and do what matters most. 

I am so grateful that I held on. I felt my questions would be answered during conference. After 5 sessions with many speakers, the last apostle to address us at conference, answered my questions. I'm so grateful for answered prayers. I'm grateful the Savior teaches us and sends tender mercies to let us know that we are in His hands. 

No matter what I can or cannot do, as long as I do what matters most, that is all matters. 

Is there no other way?

I don't think anything has had a bigger impression on my life than this quote. I ask it often. I used to feel guilty for asking it. I apologetically would kneel and ask if there was any other way for me to either grow closer to our Savior or to do his work. 

As life has gone on. I am reminded that even our Savior himself asked his father, God himself, is there no other way. Please remove this cup. But not my will but thine. 

I've realized that if I can kneel down, completely willing to one hundred percent follow God's will, it is okay to ask, "this is really hard. It is pushing me to my brink. To my edge. Is there no other way? Yet, not my will, but thine be done."

As I lay in the hospital being poked and prodded, I asked, is there no other way? As I counted down each breath, during the excruciatingly painful night, I again asked, is there no other way? As I doubled over struggling to get one foot to walk in front of the other, I again uttered the words, is there no other way? As I battled another sleepless night struggling and gasping for each breath, I found myself desperately pleading, Father, is there really no other way? 

As my pleading prayer went on. The heart went from one of asking for easing and an alternate way to one of humble submission. I trust that God can see the big picture and I a, limited by my mortal and temporal view. I get caught up in the pain and agony. I have learned that although my Father in Heaven may tell me, "no, my daughter. This is what I am asking you to do." As he utters those words lovingly to my heart, he also assures me, he will never leave me. I am his and he will walk with me. He will add strength unto me to pull me through. He will bless me. He will walk with me and send angels to bear me up on my right and on my left. 

So when I ask, "Is there no other way?" That it is ok. I'm still ok. My Father in Heaven and my Savior know I love them. And regardless of how much I struggle with the hard moments, that I do, absolutely trust my God. I will do whatever he asks. I will submit to his will. I will cling to him and hold on tight and endure whatever is required of me. 

Talmage's birthday

I love when the Davis kids come to visit. Oh how I miss them. 

While Jodi and Troy took the youth to general conference in their Ward, I got to keep my sweet nephews. Bonus. It was over Talmage's almost birthday. So we celebrated. Spider-Man cake and decor. Yummy dinner. Presents. Movie night. And games. His smile says it all. He was thrilled. Oh how I love this sweet boy. 

I can't believe my little buddy is 6 years old. 

He has been my rock, along with so many others, during my battle. He has cuddled with me, brought smiles to my face and loved me with all his heart. When I see the suffering and pain I cause and how I am a burden to so many, to Talmage, my illness is the greatest blessing ever. He says things like, "aunt Jer always has time" or "I love Aunt Jer cuddles" " aunt Jer I'll just do nothing besides hold me" and more. My illness has been his blessing. I'm always well enough for cuddles and hugs and movies. He is my sweet tender mercy to remember to find the joy, seek the blessings and to cherish my life exactly the way it is. My gratitude to him and for him is without words. He is and will always be my precious little buddy. 

Jodi's boys

As Jodi and Troy took the youth to Utah, we scored and got to keep Brigham and Talmage. 

We painted rocks and Halloween crafts. We built Lego projects. (ok. Hayden did those hints with them). They played 007 and Minecraft and Infinity 3.0.  They raced RC cars with Uncle Thomas and Hayden. They had sword fights. They shot air soft pistols. They played with the puppies. We baked. We cooked. We celebrated at and birthday. We cuddled. We watched conference. We had fun. 

Oh how I miss my,sweet boys. I love these precious nephews of mine. Those sweet smiles warm my heart. 

And Hayden. He was simply amazing with them. He entertained them and cleaned up after them. He made them lunches and got them snacks. He supervised. He let me nap and kept the noise to a dull roar. He was and is just one amazing son.  I'm so grateful he is mine. I couldn't have done it without you, Bubba. Thanks so much. I love you.