The night Chad said goodbye was heart wrenching. I felt like I sending one of my own away. I miss him over most every day. I. Miss his jokes. I miss his analogies on life. I miss his friendship with Hayden. I miss him helping Thomas. And oh how I wish he was here during this chemo. His help would be so beneficial. He called the other day. I almost cried. Oh how we miss him. He is simply an amazing kid that is now an adult. I'm so grateful for him. I'm grateful we were able to have him in our lives so much during the last several years. He has made such a positive impact in our lives.
Sunday, January 31, 2016
This boy owns my heart❤️! His smile warms my soul. His laughter instantaneously stretches a smile across my face. He laughs and brings so much JOY and FUN to our lives.
This boy. I can't imagine my life without his absolute JOY and his ENTHUSIASM for life!his smiles and laughter is simply contagious.
Julie comes over every Thursday afternoon to work with Hayden. Oh how the dogs look forward to it as she always brings her dog Ellie for them to play with and sometimes she stops at QT and gets them ice cream to share.
"But it is MY cookie!" I heard coming out of Thomas' mouth. I looked over and lighted. All three dogs were attacking Thomas trying to get a bite of his cookie. Yes. Our dogs are spoiled. Yes. They think they always need a bite. Yes. Thomas and I give in.
They bring us so much joy! They are so funny. I love Maya growling at Thomas and trying to talk to him to get what she wants. Max lays his head down and sits and begs quietly and patiently. Then there is Livvy. Oh wow. She climbs up and simply tries to eat it directly out of your hand. She is simply crazy.
As long as we were taking Brooklyn home, we begged to keep Talmage.
Talmage and I spent all day Saturday curled on my,bed watching movies. I slept a lot while he watched movies. We cuddled. We talked. Oh how I missed him.
Sunday we moved from the bed to the couch but continued our cuddle and movie weekend. Oh he is one awesome little cuddler. The puppies loved it too.
Talmage has been my cuddle buddy his entire life. He has known aunt Jer can't do much but I can cuddle. He loves it. I love it. Some of ,y most cherished moments are moments just doing nothing with him. He cuddles in and we always fall asleep. Both of us. He has such a sweet spirit. He is a tender mercy and gift to me. He is a huge blessing. He came right when u needed him.
I love you Talmage. I always will. You have brought so much joy to my life. Thank you for your cuddles and love and sheer acceptance. You are the one person that has not suffered at all because of my illness. You have completely benefitted. You bring a calm and reassurance to my heart. You love that I can't do anything but just sit and hold you. The peace that brings.....there are simply no words. I love you my little buddy. Always and forever.
Julie gave our family the greatest gift. A copy of the David J Ridges Book of Mormon made easier. I'm so very happy. I'm grateful for this gift. Each night as we sit and read the scriptures and work our way thru these books, we come closer to Christ. There is no greater gift. I love this time of day. It is my favorite. Thomas and Hayden and I stop and just talk of our Savior. We relate the scriptures to our lives. We have the greatest conversations. Some of my favorite nights are when we spend hours engrossed in he words of the prophets of old. It brings me such joy.
I am reminded of what Nephi taught. We talk of Christ, we prophecy of Christ, we rejoice in Christ so that our children will know where to look to retain a remission of their sins.
I hope Hayden remembers the tender moments we have spent in the scriptures. I pray he will know where to turn to receive guidance and help throughout his life. And I plead and pray that someday, he will love teaching his own family out of these great books. I Joel he will also find joy in teaching his family about our Savior and the message of the atonement and hope in Christ. I pray he will always follow our Savior and search for answers to life's questions, in these inspired words of Christ.
Oh this is how I feel........
The fact that these words have been said to me made me die laughing. Now hey said, it may help or make it worse. We will see.
Does that show the state I am in IF I am willing to roll the dice on my health and meds?
And then, I ALWAYS say a prayer as I take he meds. I pray that they will help and not destroy me. Oh the fun and joy of a chronic illness.
If you can't laugh, I would cry. I might as well laugh, smile and enjoy the irony and chaos in this journey.
Hayden attended his first youth conference. He was excited until he found out Jodi and Brooklyn and Talmage were coming over. He told me how much he misses Brooklyn. How with all the craziness at our house with my health, that he needed to talk with her. He had me almost convinced to miss youth conference. I struggled knowing what to do.
Friday night came and Hayden and Brooklyn were having such a great time. They were both devastated that they had to be split. Suzi said to just send her. Jodi said why not. Why should I care. Hayden gets Brooklyn time while attending youth conference. Win win for me.
I wanted a picture of them walking out the door. This is what I got. Crazy faces. They were so incredibly happy that they got to spend more time together. What crazy and fun kids.
Why not?! It's spiritual. They are learning. They are together building testimonies and deeper bond of friendship. We told Jodi we would take Brooklyn home on Sunday if she could stay.
We had happy kids as they left for a full day of youth conference on Saturday. They spent from 10 am to 10pm learning of Christ, doing service projects, playing team building games and more. Oh they were filled with the spirit when they came home.
I sure love my family. Our family unit may not look like most. But I couldn't be happier with how our family turned out.
I am so grateful for my loving husband, Thomas. He is an amazing husband. He cares for us. He treats us incredible. He is the greatest man I know. I'm so blessed he is mine.
Hayden is the dream child. He is everything I wanted and more. He is kind. He I loving. He is helpful. He has a testimony of our Savior. I love and adore him with all of my heart. He is the child I longed for and dreamed of. My joy. My heart.
Life moved forward and we were given Max, our therapy dog. He is a sweet and loving dog. He craves loves. He has a tender heart.
Maya is my baby girl. She is quite the little cuddler. She is happy. She is my shadow. And I love and adore her.
These four are my heart and soul. They are my strengths. They bring joy to my world. They comfort my long sleepless nights. They bring solace.
I'm grateful for my Savior. He has given me exactly what I need.
I was so sick that I couldn't do anything besides lay on my pillow. No,lights. No sounds. No smells. No food. Oh how it hit me hard. I could not believe how sick I got so soon. The nausea and exhaustion was overwhelming. My body absolutely rejected it.
My eyes looked like raccoons according to Hayden. I'm grateful for those who stopped by and called and helped. I was overwhelmed with support and so very grateful.
I'm grateful for those hat just stepped up and organized and helped get things arranged. Suzi called and got people here, went grocery shopping, made food and flavored water. Hung out with Hayden and probably more than I have any idea.
Jodi called and got things going in the background.
Hayden hung out with me and took care of me.
I'm feeling much better. Not so sick and I can eat a few items. I slept most the day. I'm grateful for less nausea.
Emotionally, I'm surviving better than the last three days. It all happened so fast. I'm barely wrapping my own head around it.
Today Jodi called and got Laura starting making head wraps for when I lose my hair. Terri started some crocheted beanies for me.
Jodi will come out next Thursday to help ease the day. To help me eat and transition to this new normal. This is harder than I thought it would be. But, one day at a time. One emotional hour after the next. I will get thru.
I've survived six long years. I've had ups and downs. This is just one more in a long line of fights. I'm trying to combat it. I will succeed. I will overcome this just as I have so much more. I have a lot of fight left in me. So somehow with all the love and support around me, I will conquer. I'm not giving up.
Thursday, January 28, 2016
I survived day one of chemo. Of course, I started on a lesser dose and they will double each week but I survived.
Since the decision was made on Tuesday late afternoon at 4:30 and chemo started Wednesday, I didn't have a whole lot of time to adjust. So along with the nausea today, many tears were shed. As I tried to wrap my own head around what is happening.... Chemo treatments, nausea, future hair loss, scheduling family pictures prior to losing my hair, fear of rejection, scared to walk this journey alone, uncertainty of what the future holds, mixed with hope that these treatments may help, the reality that I'm having dozens of seizures a day, the emotions that come with chemo and new meds and new diagnosis and the unknown.
As I started the day and only Thomas and I knew what was taking place, I prayed for comfort and reassurance. My dear Savior wrapped his arms around me and the Holy Ghost comforted me with a warmth of a think comforter. I felt safe as Thomas brought me my oral chemo, and I tried to down half an egg and piece of toast to lessen the nausea. Thomas took my hands in his and offered a beautiful prayer. One of hope and strength and of peace, comfort and reassurance. As he left for work, he woke Hayden to come lay in the bed next to me just in case I needed him. I curled back in my blanket and fell into a deep and relaxing sleep.
I awoke a coup,e of hours later to nausea but tried to hold it together. I was grateful when Jodi called and was concerned and cared about my day and unexpected chemo start. It was comforting to have her near, even if just near in spirit. Suzi stopped by and I feel support coming.
Lunch time rolled around and Hayden made lunch. I walked into the kitchen and immediately the nausea went full force. Hayden had cooked fish sticks. Oh the nausea it set off. Poor boy, I made him and his fish sticks go outside and told him all remainders were to go directly to the outside trash. I opened the doors and sat on the front porch trying to avoid the sickness and smell. Poor Hayden. He felt so bad. I didn't have any idea, how could he. (Just writing about it is bringing the nausea worse right now)
My visiting teacher, Donnie Tayrien pulled up. We visited. We talked. It was reassuring to have someone else offer words of encouragement.
Hayden and I watched a documentary before Joyce came over to make dinner with Hayden. The opted for soup and rolls which I appreciated. She is so good to us. As they worked on dinner, I grab end the pups and decided to nap again. I talked to my dad for a few short minutes during that time, as well. I wanted to give him a heads up on the situation. Jodi called and let me vent to her for which I am truly grateful.
I was shocked when Hayden came in the room telling me my brother Josh was at the door. Suzi had told him and jake that I started chemo. Josh sat and visited for a while reassuring me that he would be willing to help in any way. His visit mean so much to me. The support was such a gift. We laughed. We talked of Dallin leaving on a mission. And talked about life. My spirits were lifted.
This evening I was shocked again with a phone call from my dear brother Jake. Although Jake was very disheartened that josh had stopped by and Jodi had called multiple times and suzi had been over twice. He laughed that he didn't get home until almost 8. I was just grateful for the call. Jake has a way of making me laugh and smile. He told me I needed to go get a wig now. I probably should but need a couple of days to wrap my,head around all of this chemo business.
Thomas and Hayden out on goosebumps movie to try and distract from the nausea. I am just grateful that they care. They both folded laundry during it and straightened he house for me. Not that I could do it but it takes the pressure off. Who am I kidding, I never can do it, chemo actually made me feel less guilty.
Unfortunately, the nausea is worse tonight. Nothing is working. I'm so sick that I can't find sleep. I'm not sure I can find anything to work so I will be trying to research new ways tomorrow. Instead I lay here just extremely nauseaous and watching army wives and blogging. Anything to keep my mind off it. It's not working. I think typing is making it worse. Maybe a hot bath.
I am grateful for good doctors, supportive loved ones, a wonderful husband and son that would do anything for me. I'm truly blessed. I'm grateful for my Savior and the Holy Ghost that have made this day much more emotionally bearable.
If I could ask for anything. It would be prayers. Prayers that I will stay strong. Prayers that I can endure. Prayers that the chemo works. Prayers that we can get disability. Prayers that I will find some relief. I grateful for my,friends and family that love me. I am truly blessed.
Friday, January 22, 2016
The diagnosis' are starting to come. Sjogrens disease is the latest in a continuing downward spiral of my health. Small fiber neuropathy. Autonomic failure. Polyneuropathies. Gastroparesis. Paralysis of the esophagus and upper airway systems. Neuro-cardiogenic syncope. Urinary and fibroid tumors. Seizures. And the list goes on.
Praying the disability hearing goes well as this is our last appeal. How when I cannot hardly walk around my house without getting winded can I not be considered disabled? How when I go weeks without leaving my house could I work? My social life these days consists of visiting with friends as they drive me to and from doctors appointments. I can't go to lunch or shopping before or after but absolutely fall into bed or the couch when I walk or drag myself into the house. The pain keeps me up all night and exhausted all day. I struggle to catch my breath and walk at the same time. I lay in bed with heated blankets on and the fan going to try and keep breathing while not allowing my body temperature to get too out of control. Other days I sit with ice packs in my clothes and wet rags on my head to cool my body. Just carrying my plate from one room to the next can cause my heart rate and body temperature to jump as of I were running a marathon. Then the doctors say that the effects of one seizure takes more recovery time than those running a marathon. There are days when I awake and I am unsure who those are around me. I'm a stranger in my own home and own skin. Unsure of where I am, who I am and what is happening. Fear embraces my world and I freeze.
All these things bring unimaginable fear and apprehension. Not knowing when the next time your body will collapse and lose consciousness or go into grand mal seizure is frightening. No plans can be made. I have to have back up plans always in effect. What if I am too sick for Thomas to take Hayden somewhere. "What if's" plague my existence.
No mom should have to have a plan for their child if mom goes unconscious or has seizures. No son should have to know how to give medications, pull a mom out of seizures and know who is "on call" that day in case there is a problem.
I'm grateful for the amazing son and husband I have. For their constant love and support. I'm grateful for the countless loved ones and friends and Ward family that rescues me. I'm forever grateful for a loving Father in Heaven and Savior that reassure me and help me. And I'm blessed with the companionship of the Holy Ghost and the peace and comfort that brings me.
I do have blessings. So many. But regardless of the good. I am disabled. I am fighting a battle that can only be put on hold. It cannot be won. I cannot conquer this disease. I can fight it. I can defy all odds. I can battle my heart out. But the sobering reality is, I have an incurable and progressively disabling disease. It is literally killing me more and more each day. My body has turned on my organs and raged war on them. It believes my kidneys and liver, lungs and intestines are all foreign invaders it must destroy. I have small fiber neuropathy that is like cancer of the nerves. It is eating me alive. Nerve by painful nerve. I am experiencing muscle death. It is excruciatingly painful.
My "good days" consist of sitting on the couch watching a movie rather than lying in bed. Being able to go for a ride in the car just to escape the walls of my home that so often hold me captive. Being able to sit for 30 minutes at the table to play a quick board game before the pain and memory fog sets in. It means reading with my son without falling asleep during a sentence. It means so much less than what my life used to look like. A dear friend got married and in order to just drop by the reception for less than 30 minutes, required four days in bed.
I try not to put my real reality black and white so much. I try to sugar coat it and find the good. But the reality is. I am disabled. I cannot work. I cannot work part time. The reality is that even if I could, who in their right mind would hire me? I'm on pain medicine. I have daily seizures that cause me to collapse and sleep. I'm not sure where I am or who I am afterwords. If I raise my arms over my head, stand up too quickly, bend over without balancing myself or any other random things, I pass out. I vomit at least three to twelve times a day. I need multiple naps. My brain cannot focus for more than a few minutes. I forget so much. The pain becomes so intense I cannot think. Lights and sound irritate the tumors and migraines. I cannot go outside during the day because of the light and temperature. I cannot regulate my internal temp and therefore have to have access to heating pads and ice packs and wet rags and fans at all times. I have to be covered in the sun or lose consciousness or have seizures. And let's not forget all the times I am so confused that words on a page look like Chinese. Numbers and letters invert. The words in a book look like a foreign language. Some days I can type. Others I cannot. Some days reading comes easy. Other times it is blurry and unreadable. And if I leave the house on Monday, I won't be able to leave my bed again until at least Wednesday and if I tried to even go out twice on Monday and Thursday for an hour or two each including car time. Wow. I'd be flat in bed for a week.
Yet. My fate rests in the court of law. The judge and a work consultant will determine my fate. Not the nine specialists who treat me. Not my primary care doctor. Not testimonies from loved ones and family and friends. Nope. I get ten minutes with a judge to plead my case. Where it has already been determined. Where the questionnaires aren't about diagnosis and life abilities but how long can you sit? How far can you walk? Can you possibly do anything work related. My world has turned upside down. I have not been able to drive for over 5 years. I've not been left alone for ant significant amount of time in over 5 years. The jury has permanently dismissed me from service. The DMV has considered me disabled to the point I can no longer drive. I am confined to my bed and home. I struggle to breathe. I struggle to go to the bathroom. I struggle to walk. I struggle to regulate my heart. I fight each day to just survive and not allow my body to shut down. Yet, because my condition is rare. And a perfect little box cannot be checked. I cannot get the help I so desperately I need to be able to fight this disease.
So what do I do? I pray. I pray. I plead with my Savior. I pray for help. I,pray that the judge will really look at the evidence and see with not only his eyes but his heart. That he will have mercy on someone that is not trying to cheat any system but only get the help I deserve and have paid for. So that I can have the money from social security so I can continue to pay for my medicines and get the treatments that are prolonging my life with those I love. So I can get the treatments that make my life bearable. So I can help with the costs of those things that bring relief like chiropractors and alternative treatments to dialysis. So that I can afford my,vitamins. So that we can afford to keep on air conditioning so my body can have help at regulating my system. So I can get the basic necessities to continue to fight to be Hayden's mom and Thomas' wife. Please pray we will be blessed by the loving reach of our Savior as he softens the hearts of those that are in charge of this case.
And yes. I am still counting my blessings. I am grateful for this life because it means I am still alive and living and here with my loving husband and incredible son. For them, to be with them longer, to battle for them and with them, I will give my all and continue to fight.
Wednesday, January 20, 2016
Oh how we have absolutely LOVED the Etherington family Kuching down the street from us for the past year and a half. And for six months prior to that Chad stayed with Suzi. So for the last two years,our lives have had Chad involved on a regular basis.
We have absolutely cherished him in our lives. Hayden thinks he is the greatest cousin ever and the older brother he never had. Those two became so close. Hayden always says, "while Chad says..." Or "Chad taught me..." And completely idolizes him.
Chad is absolutely incredible to Hayden and has taught him so much. He helped Hayden find his own way. He taught him to believe in himself and not worry about the perception of others and social media. He helped Hayden gain confidence. He brought him out of his shell. He loves Hayden unconditionally.
Of course I love Chad for who he is to Hayden. But it is more than that. Anytime Thomas was working on the house or doing a project, Chad was right there helping out.
But, I miss Chad for other reasons. I miss Chad sitting in the chair next to my bed just talking to me about anything and everything. I miss his theories. I miss him. I loved Chad for his concern for me. He always asked how I was. If I needed anything at all, he was right there. He would help me with anything from taking care of dogs to entertaining Hayden to staying with him is I had to go to the hospital orrunnign down because there was blood everywhere and I could not do it anymore. He helped me with homeschooling Hayden. He taught Hayden. He cared about all of us. He brought so much joy and life into our home.
We all miss Chad like crazy. We can't wait for his first visit home from Utah. We are going crazy without him.
Chad left for Utah on New Years morning. So New Year's Eve we got together and celebrated Chad. Our New Year's Eve was crazy. We ate pizza. And played logo party and I wa in bed befor 9pm. Exhausted.
We had so much fun playing logo party. It was girls vs boys. The first game the girls took it and the second the guys got us good. The guys laughed that we could go from point A to Z quickly and could never figure out how we got the questions right.
My favorite moments: suzi has the charades card and had to act out "slip and slide". She ran across the room and literally slid on the ground. We were laughing so hard we couldn't guess. So she did it again. We guessed big league chew or baseball but never thought of the obviously slide for slip and slide. Oh how we laughed.
Another favorite was me acting out hostess. I opened the door and showed people to the table with menus then opened a package and ate it. Lisa immediately guessed hostess treats. The guys were stumbled.
2015 held many cherished memories. We were blessed to have had some great moments as a family. We overcame trials and hard things. We were faithful to our Savior and Father in Heaven. We became better at reading scriptures and family prayer and family home evening. We cherished the little moments we celebrated together. We grew closer together. We dreamed and loved and conquered and succeeded.
We will always hold 2015 in our hearts but are looking forward to what 2016 will bring. New goals. New joys. New blessings. New challenges to face. New trials to overcome. More fish to gain. More love to share. We are hopeful and excited for the new adventures. 2016 is our year, we can feel it.
As 2016 approached, I thought of what I want to accomplish and what family goals we needed to set. I read this talk from President Monson. I loved it. This is my ultimate goal. So we decided to embrace it and incorporate it into our family goals and our focus for 2016.
When baptized as members of the Cjurch of Jesus Christ fo Latter-Day Saints, we Covenanter to mourn with those that mourn, comfort those that stand in need of comfort, to clothe the poor, to feed the hungry and care for the sick.
As I thought of how to accomplish that, of course he strokes came to mind... Nightly scripture study, family and personal prayer, noticing the blessings and Savior's hand daily in our lives, showing gratitude, helping others and drawing closer to Christ.
This talk and quote helped to simplify our goals.
Kneel down to pray
Step up to serve
Reach out to rescue
Seek the good
Show gratitude and more
As we do these things, I know we will find more peace in our trials, find more direction, have an easier time trusting our Savior and seeing his guidance and will in our lives.
I love a fresh start. A time to start again. Get a fresh slate.
2016 has great things in store. I can just feel it. Bring it on. We are ready to embrace our lives and learn and grow.
We absolutely love hanging out with Jake and his family. Jake has all the nieces and nephews wrapped around his finger and they all refer to him as King Jake. He is a great neither, as well. He is crazy fun. He is loud and crazy and fun and full of life.
I love his sweet wife, Rosie. She selflessly colored and cut my hair and styled it for me a few days before Christmas. Then had me come over on Christmas Eve and she did my hair and make up because she knew that me doing it plus going to Christmas Eve party would never happen. So she sacrificed some of her time on Christmas Eve to help me.
I love those three sweet nieces of mine. They are all so different and so crazy and fun. They are a great mix of jake and Rosie.
Kaylee is turning 16. She is driving and got a new car. She is boy crazy and full of life. She has tons of friends around always. She is a girl version of Jake. She is outgoing and fun and crazy. She is much more comfortable around the adults and loves to chat. I love that she is so excited to see us. She makes Hayden give her a hug. She gives Hayden advice. She is joy and energy bottled up I. A small little bundle. And I love her.
Katelyn in 14. She is quieter and shyer. She carries her emotions on her sleeve. She internalizes and wants so badly to be accepted and loved. She is so Simonton. She holds a special place in my heart. She is so much quieter and reserved than the rest. I love the sweet relationship that Hayden and Katelyn have. They are the two closest in age. They adore one another. Katelyn and Hayden both build each other's self esteem. They are so good for each other. I love my Katelyn girl.
Kiley is the baby. At almost 13, she is the most crazy about boys that I have ever seen. She is as stubborn as they come. That girl has some serious determination in her. She will not give in. She is smiley and athletic and a cheerleader. She is already wanting to date and hang with boys. Oh jake is in trouble with her. I love that she loves her cousins and tells me all about her time with Brooklyn.
I love spending time with this sweet family that I love and adore. Cards. Family games. Yummy food. Lots of good conversation. Building relationships. Life is sweet when spending time with them.
I love this picture of josh and Hayden and Chad. These boys are his heroes. He looks up to the, and admires them. I wish I had a picture of Tyler, as well. They are so great to Hayden. Eg love him, protect him, teach him and cherish him he simply adores them. I'm grateful for Lisa and Bob and them just including Hayden and loving him so much.
I love the huge smile stretched across Hayden's face. I love how happy he is. I love these boys for accepting a younger one and being so kind and wonderful to him. It melts my momma's heart.
My sweet mother in law, Joyce turned 80 years old. She had never had a surprise party and hadn't had a huge birthday party since she turned sweet 16.
So Kelli, being the great daughter she is, organized and planned and got everyone together to surprise her mom for her birthday. Terri and Nathan drive down from Saint George and Scott and Shawna came in from Kingman. The rest of us all gathered at Kelli's house, hiding our cars.
When Joyce walked in the door she literally fell outside due to shock. She named each of us that were there, going one by one around the room, then her eyes settled on Terri! When did you get here? Then noticed Scott and Shawna, looking even more surprised and she noticed I was actually out of the house. She later told me she didn't know which was more of a shock. Me being there or Scott or Terri.
Kelli had ordered a long sub and had chips and fruit and veggies and cake and goodies. It was a perfect party. Joyce was all smiles.
The voice level was high. The teens all talked as the adults reminisced. Shawna and I sat and listened. The stories of growing up and traditions and family reunions and vacations. Of how the boys always brought home snakes and spiders and bugs. I laughed. I enjoyed hearing the stories.
We even played logo party. Teens vs adults and girls vs boys. Umm. Can I say I was on both winning teams. It was so fun. Murphy's aren't big on games so it was something totally new and fun. Oh how we laughed. Joyce was fantastic at charades both acting out and guessing. She still amazes me sometimes and does things I would never have guessed.
I came home and absolutely crashed for days on end. It took absolutely everything out of me to drive to Mesa and spend several hours listening and talking and playing games. But it was so worth it to see the sheer joy on Joyce's face that we were all together.
Happy birthday Joyce! I hope you know how much we love and cherish you. I really did luck out and get a wonderful mother-in-law that I love. She constantly serves our family, takes great care of us and is willing to sacrifice for us. She is an amazing lady and I am grateful for her dedicated efforts in raising such a wonderful son.
Shawna, Scott, Thomas, Terri and Hayden - all sitting and reminiscing.
During our entire marriage, I think this is only the third or fourth time all of Thomas' family has been together. It's so fun to see Thomas with his mom and sisters. Someday I will meet his father and thank him for raising such a great son, just as I thank Joyce for, so often.
Terri is Thomas' oldest sister and is on the left. She is married to Chris and they have three living children and two twin boys that died shortly after birth of similar heart conditions that Hayden had. Their children are Ann(25), Nathan(20) and CJ(18). CJ and Chris missed the reunion as Chris had to work and CJ is listed in the army. They live in Saint George, Utah.
Kelli is on the right and is the next oldest. She had Kassandra and then adopted her grandchildren (Kassandra's children) Logan(15) and Victoria(13). Since then Kassandra married Trent and they have Lily(6). Kelli lives in Mesa very close to Joyce.
Thomas is the oldest boy and I hear stories all the time of how grateful his dad was to have a son. Of course, that is where Hayden and I fit in to this group. I love the smile on my husband's face that shows how happy he is being reunited with his siblings.
Scott came next. We have the same birthday other than he is one year older than me. I love watching Scott and Thomas talk. They are brothers and oh how they laugh telling stories on one another about jumping out of trucks and breaking arms and legs to coming home with the snakes that had bit them multiple times. Oh how Joyce survived those two, I am truly amazed. Scott has Ashley(25) and Megan(21) and Jazzy(8). Scott and Shelly divorced a couple of years back and he recently started dating Shawna. Shawna fit right in laughing and joking like she had always been apart of the family. Scott is the only one that remained in the small town Kingman, Arizona, where they grew up.
Then there is Joyce. Front and center. The strength and matriarch of the family. She is the glue that binds them all. She is an incredible mom, mother in law and grandma. She is an angel. I'm so grateful for the gift of her. And I think she looks simply amazing for being 80 years old. We sure love her and all she does for our family.
Being the oldest in my family and being the youngest adult in Thomas' family is so different. Yet fun and adventurous as well. Hayden loves having older cousins. Life is good. I'm grateful for these additional family members that I love.
My sweet nephew, Dallin, left on a mission a couple of weeks ago.
I have loved Dallin from the first moment I laid eyes on him. He made me an aunt. He smiled at me and brought so much joy to my life. I would come down from college in Utah to visit him and snuggle with him. I loved taking him for adventures to the zoo, Tucson for he weekend, to make brownies and I even endured watching Barney shows.
Then we had Hayden. He spent the Christmas holidays in the hospital. On Christmas Eve, we left the hospital for a few minutes to go to my dads house on Christmas Eve to,drop off gifts. Dallin at 5 years old asked about Hayden. We explained he was really sick. That was such a hard day. He wasn't yet breathing on his own.
As Dallin went home that night, he knelt down and in prayer told Jesus that he would give up all his toys if he would just make Hayden better. Then he asked that Santa find Hayden in the hospital. Steph called me to share the fantastic news. Christmas morning we received that miracle. Hayden started breathing on his own. And Santa and Mrs. Claus personally visited Hayden. I called Dallin and told him both the miracle he took part in and that Santa found him. He was so happy and so proud of himself. I developed an even greater love for Dallin that day.
Throughout the years I have watched Dallin grow from young boy to teenager. At the beach last summer, Thomas and I spoke with him. He was unsure about his future. But the loving Dallin self. He let the little girls paint his toys and was kind to the younger kids. He was more wrapped up in others than himself. I was impressed with who he was becoming.
The change in him at his farewell was incredible. He developed a sense of self. He knew that he was God's son. He knew the responsibility he had in sharing the gospel so that all may know how to return to live with our Savior again. He challenged his siblings and cousins to follow our Savior. To be disciples of Christ. He impressed and touched Hayden's heart.
At the goodbye part for Dallin, my heart swelled with pride for the incredible man he has become. He took time with each younger cousin there. He talked wit Hayden. He encouraged him to follow he Savior. He challenged him to read the scripture, share the gospel and to write him with progress. He told Hayden he believed in him. Hayden's smile says it all. He was deeply touched by Dallin making sure he was ok and helping to strengthen his resolve to share the gospel.
I can't wait to see how he changes lives on his mission. How he helps lift others and teach them about their Savior and their Savior's love for them. I'm excited to see how he changes and comes even closer to our Savior. Dallin will do great things in his life. He has a special mission. I'm very proud of him. It is amazing the confidence and strength that comes from knowing that you are. Child of God and his help is available personally and individually for you. Dallin found his personal relationship with his Savior and the confidence it has given him has been remarkable.
As we write him and communicate with him, I am hoping that Hayden develops a love for teaching others about Christ. That he sees how missionary work brings peace and love and joy to the hearts of so many others. I hope it inspires him to continue on the path. Hayden idolizes Dallin. I'm grateful Dallin took time for him. It did make a difference.
We wish you the best Dallin! We love you and support you.
One of the greatest blessings of being in a ward a long time is the relationships and friendships. I met Toni and her family back in the 2005 time frame. Hayden was little. To I was in young women's. I became dear friends with her mom. Thomas and I served with her parents, Ladell and Ann Call as Ward missionaries and loved getting to know them and the incredibly strong and righteous people they are. Time moved forward and he became our dear bishop.
I remember walking in to church one Sunday and Toni was sitting by her mom crying. I wondered what was wrong. Previously all my interactions with Toni, I had seen a huge smile on her face. She was valideictorian her senior year and graduated with Ann. She was kind to all, embraced the gospel with all her heart and included everyone. She was a light and joy wherever she went. She was headed great places.
I came to find out that Toni was dealing with tons of pain and they could not figure out what was wrong. I soon miscarried the twins. Life turned crazy for us as I battled hysterectomy, shingles, pneumonia I couldn't shake and three surgeries. Toni underwent testing and had to drop out of her first year of college. She was almost bedridden at 18 years old. My health continue used to deteriorate.
When I saw a chiropractor or treatment that helped me in any way, I contacted Ann to tell her to try for Toni. They likewise did the same for me. As I battled, Ann made Toni and I soup and homemade bread and treats.
After my Ivig treatments and mayo experiments, Toni and Ann took a rotation of sitting with me. And Toni and I began to be friends as we fought these invisible illnesses together. I found myself reaching out to Toni, knowing how scared I was and how much more frightening it must be in my early teens vs my forties.
Bishop Call helped Thomas and I on many occasions with blessings and advice, unconditional love and reassurance that we were known and loved by our Savior. Thomas leaned on him for support. Ann continued to call and text me and stop by with treats and encouraging messages. She was also there to always help Hayden transition at church from class to class.
I started become protective of Toni as people questioned me I understood the things she faced more. People couldn't understand me being bedridden so young but Toni.,, just out of high school and she couldn't date or hang out with friends or go to,college or work. She also felt the sting and hurt of aloneness.
Life marched froward. Our friendships grew. Our family and theirs and my love for Ann and Toni. I rejoiced in Toni's successes and Ann helping her. Bishop was released and called as Hyaden's young men's president. Ann checked on me. I checked on Toni.
I watched Toni become a spiritual giant and face life head in with a smile on her face. She worked hard and graduated college. She continued to amaze me.
Then a couple of months ago at almost 1 am, I received the greatest text. Toni was engaged. I am so happy for her. She deserves all the happiness in the world. She met Justin and he was her Thomas and vowed to care for her. He loves her enough to care for her and help her manage her disease.
Ultimately Toni and I were diagnosed with different disorders as we fought our way through the. Medical system. But the strength I received from the Call family has been amazing. They have been Angels on our journey.
So although I was dying and miserable on Toni's wedding, I had to go see this girl that I have grown to love and admire so much. Her positive attitude and light that she is shines so deep. She will always stay close to our Savior. It's who she is. She will continue to be precious to me and our family.
The Ward has now split and we do not get to see her dear family weekly. But we text and call and visit. They would do anything for me and Thomas and Hayden and we would do anything for their family. They are the truest adpnd dearest of friends.
I love this picture of Toni. It shows her faith and courage. It signifies that obstacles can be overcome. That life's trials may beat us down but we have the strength to get back up and stand. I love that she will fight for all that is right in our Lord's kingdom. She will stand as a beacon and light to guide others forward. She will always be one of my personal heroes as she fights with dignity and faith and hope and unconditional love. She is a warrior. She is my friend. I love her. And I loved being able to hug her and tell her how truly happy I was for her.
Get ready Toni! You are setting sail on the greatest adventure. Traveling life with your best friend by your side is truly a gift. Having a husband that honors his priesthood and can give you a blessing, that will fight for you, pray for you, pray for answers, seek guidance in the holy temples, and cherish you is such a great gift. I know. Because I married one incredible man, as well. He makes my journey easier and guides me and strengthens me and loves me every single day. True men of God are gifts. Hold tight. Fight for your marriage just as you have fought to find answers and strength to fight your disease. You are worth fighting for and so is he. I love you and am so happy for you.
I sure love these pictures because it is pictures of my hearts true loves.
I so love Thomas and Hayden with all my heart. They are the reason I keep going. They are my smiles and my joy. They are my heart and soul. They simply are the greatest gifts and blessings I have ever been given and ever could dream of being given. They are mine. And that is all that matters. Families are forever. And I am so grateful I will have them for all eternity.
Thursday of last week brought a lip biopsy to confirm how far progressed the Sjogrens Syndrome Disease has progressed. I was nervous and oh how I hate anything to do with teeth. Thomas lovingly went with me, Julie stayed to bring me home.
Thomas and I met with he oral surgeon. He said it would be only a few minute, 1 cm and 2 stitches. However, we should know....even when it comes to my disease, I am not the norm. Over an hour later, a dozen stitches and cut from one side of my lip to the other, the doctor was finally able to get what
He needed. Oh the pain. There are so many nerves in the lip and mouth.
Julie stayed with me and entertained Hayden while I tried for sleep. I was grateful for her beg there as I was so uneasy after the procedure and having loss conscious twice so close together. The pain continued to increase each day until Sunday morning I was in excrutiating pain.
However, for the first time in over five years, I was asked to teach relief society. So hospital was out of the question for another five hours. As a side note...oh how I miss teaching and being around people. Oh how I miss the friendships of going to church and staying for all of it. Oh how I long to get back there. I loved teaching , even if it was only for 15 mins and sitting on a chair.
After church, I crashed. I slept for six hours. It's still strange to me how something so small can take all I have. When I awoke, the pain was unbearable. I tried everything. Nothing worked. It throbbed so bad that I was so worried that it was infected. It definitely looked angry and inflamed and infected.
Poor Julie. She was wonderful and came over to sleep on our couch so Hayden wouldn't be alone. He was nervous as he could tell how much I hurt.
Bad call on ER. Some days they are great, others they just think I am drug seeking. Really. I asked if there was an infection. Yes. The pain was high but told the, that I couldn't keep,down meds because of possible infection. I was concerned that the oozing was infection. Hours later they had done nothing but give me meds. While there, I learned why the pain was so incredibly bad. My stitches had worked their way out while ripping thru the tissue and incisional sites. My body completely rejected them as it had. The other bone transplants. Ugh. They literally came out whole in my hand. And left gaping holes in their path. The extreme pounding and throbbing was my immune system trying to get them out on the only way it knew how. The ER didn't even look in my mouth. Frustrating.
Since then, they have all worked their way out minus two and boy are those inflamed and angry looking. I'm so nervous to call the surgeon today. Hopefully my nausea will stay at bay during the appt.
Monday night brought nausea, vomiting and two days of not keeping any medications or anything down. Oh how miserable it is to be sick on top of teeth/jaw/incisional pain.
As I had an intense pain strike, I collapsed and was unable to stand. While excrutiating and debilitating and paralyzing pain hit throughout my rib cage/neck/arms/lungs, I cried out in pain. I was unable to move while I jerked all over and battled pain that is indescribable. Thomas quickly laid his hands on my head to give me a blessing. He couldn't keep his hands on my head from the jerking. Haydenhad tears. The dogs howled. I screamed.
Gratefully and miraculously, the blessings of the priesthood powers and heaven were called upon and the pain eased. Still paralyzed and unable to move, my dear husband spent the night holding a trash can under my chin while I was so sick. I am so grateful for such a loving husband. He gets so little sleep because of me yet treats me like a queen every single day. He cherishes me and even in my most helpless and disgusting moments, he stands with me.
I've laid flat in bed since the hospital. I need to call the surgeon today. Hopefully answers will come. But I am one step closer to answers. I pray this will bring more understanding and relief to our lives.
Thursday, January 14, 2016
As we headed from Summer's tormented heat, I hoped for a little relief from the sun. The easing of some symptoms came but not any additional strength.
As fall turned to winter, I prayed the extra energy it takes to keep my body working and breathing would stay the same or improve. Unfortunately, my breathing is so much worse, I struggle to talk and walk. And cannot do both at the same time. Relief still has not come.
Over the last few months, instead of finding any reprieve from the every day pain and struggle to live, the symptoms and side effects and disease has progressed. Not exactly what I wanted or prayed for.
As the weeks continue to roll on, each week finds me weaker, struggling more and sleeping more.
In the past several months, there is not a day go by that I do not hit a 10 or higher on the pain scale.
My lungs are getting weaker. I struggle more to breathe.
I am only awake about 6 hours a day, scattered. 30 minutes here, an hour there. Never continuous.
I'm so exhausted.
And fearful that I am losing this fight.
And fearful that I am losing this fight.
I know miracles are real. I know they are given by our Savior.
With him, his mercy, his love and miracles, my symptoms can ease.
Please pray that my body may strengthen. So I can continue this fight. I am a firm belief in prayer. Collective prayers can and do work miracles.
Thank you for being my friends and prayer warriors. I am so grateful.
Wednesday, January 6, 2016
Monday I went to the rheumatologist. He decided to hold off on chemo and immunosuppressant drugs until we can get confirmation on an autoimmune disorder. I struggled as part of me just wanted to try to stop the internal paralysis. Plus, I had emotionally geared up for the beginning of the treatments. So to have to wait to schedule eye, lip, esophagus and lung biopsies was a huge disappointment.
As I was working with Hayden today, the phone rang. The ophthalmologist office called and said the rheumatologist had called and I needed to get in ASAP. I'm glad I didn't have as long to think about it because boy did the couple of hours thinking about an eye biopsy freak me out.
The ophthalmologist preformed his testing. In order to test positive for Sjogrens disease, the test has to come in under a score of 10. I was at a zero. So there is no doubt that I have this disease. And full blown.
As I researched Sjogrens and the extent at which I have it, I was amazed at how many of my symptoms are related to this disease. The doctors have thought this was the cause but couldn't prove it. Now there are answers and treatment options. Although this is an incurable disease, it does help that they know the cause and hopefully will be able to ease some of the symptoms.
Sjogren's disease causes some debilitating symptoms. Small fiber neuropathy, peripheral neuropathy, dysautanomia, neurological issues, sun allergic issues, debilitating fatigue, recurrent sinus & pneumonia and bronchitis infections, struggle swallowing, paralysis of the esophagus, vasculitis, raynaulds, interstitial cystitis, gastroparesis, joint & muscle pain, arthritis, lung issues, ibs, dental issues and decay, dry eyes, cracked tongue, skin problems and more. Eventually it shuts down kidneys and lungs and liver and causes pancreatitis. If it progresses far enough, lymphoma is the next step.
I have a diagnosis. A reason my body is shutting down. A reason for the pain and diseases and why I'm miserable. A reason why I struggle each morning to survive.
I am hopeful that now I can receive the help I need. That insurance will help me pay for my treatments. That now maybe I can receive some relief. So although it isn't a fun disease, I am grateful that after five long years, that I finally have more answers than questions. And I have a priceless gift....hope! And with hope, anything is possible.
Monday, January 4, 2016
This last week has been so lonely. I've shed tears. I've been depressed. So depressed. And when I think about it, I feel worse starting a new year in such a down place.
The thought of what decisions and choices I must make in the next few days and hours is overwhelming. How do you decide between methotrexate and Imuran and rituxin and chemo drugs? How do you trust this is the right decision when the side effects and risks are longer than the benefits?
Cancer is so scary. When most people are diagnosed, they are not alone. People hear they are sick and starting chemo and they rally around them. They get hugs and cards and balloons and treats and visits from loved ones, friends and people from church. They are surrounded in love and concern and care. They are lifted by so many and helped on their journey.
When someone like me has been facing it for years, the reaction is the opposite. Quiet. Changed subjects. People telling you they cannot deal with more bad news from you. Being told to look for the good. Be positive. Quit dwelling on the bad. And even worse. Sheer silence. Nothingness. No reaction. No hugs. No I'm sorry and just a changed subject. No troops rallying around. No help. Just more days battling this illness alone. No one caring. No one coming to your aid. No one from the ward coming to help. No relief. No hugs. Nothingness. Just the longings op for someone to care. To say you matter or I love you, I wish this wasn't happening to you.
Now don't get me wrong. I have my husband that holds me and tells me I can do this. I have my son that prays for me. They are my rocks. They shoulder this trial with me. I never thought that my son would have to shoulder so much or endure so much at such a young age. At 14, life shouldn't be which chemo drugs and asking your friends if they are sick or requiring them to wash their hands. But he tells me that he loves me and is grateful to still have a mom here with him. And Thomas thanks me for enduring this for them. I have a few friends and loved ones that still check in and help to lift me. The number is less than last year but I'm grateful for those that still love me and care even as I round into my sixth year.
There are days when I plead for someone to reach out. Someone to call. For a text or card or anything to reassure me that fighting this is worth it. That I matter. That I am worth it for someone to interrupt their busy day to find time for a shut in. To,lift my spirits.
Then I am reminded that our Savior was lonely. Even his apostles fell asleep during his darkest moments in Gethsemane. He was alone for 40 days and nights as he was tempted by the adversary. He felt alone and forsaken by those he loved and served. The prophet Joseph Smith felt alone and abandoned in Carthage jail. He pleaded with our Savior for comfort. Job, in the Old Testament experienced one heartache after another and he lost his friends and family and loved ones. He experienced total abandonment. But the one thing all these had in common was our loving Father in Heaven and our Savior, Jesus Christ did not abandon them. They were loved by God on high. Their needs were known by God. He did not leave them. He loved them.
I am not yet as Job. There are people who love me and care about me. I must remember that I have those that unconditionally love me. I'm promised in blessings that those from the other side are too numerous to count. They know my trials and struggles and how I endure the best I can. They love me unconditionally. They walk with me and comfort me. They care that the road ahead is even harder than the past five years I have walked. They care that I turn to my Savior even when I plead for relief or companionship or someone to step away from their busy lives and show they care. When I am hurting and need someone to comfort me, my Savior comes. He sends his angels. He sends those that have gone before. He cares. And I'm learning to let that be enough. To let my Savior ease my pain and burdens and let him calm the injustices of life and allow peace and calm to feel my heart.
And even when the world's cares consume me, I am gently reminded that my eternal Father in Heaven and my Savior, Jesus Christ are aware of me and my needs. They care that I am scared to start chemo. They care that I need a shoulder I or a friend. They come. They do not abandon me. They send help. They send relief. They send hope. They send love. And if God and Jesus Christ are aware of me. And they care. Well shouldn't they be enough?! I am theirs. I am precious to them. And someday, when I return to their presence, I will be welcomed with hugs and love and reassurance that tells me that I am enough. And I am ok. And that my Savior is proud of me and how I handled things. There is no greater gift. So as I find myself wishing for help here, I try to remember that the greatest one to walk this earth knows and loves me. And that helps my little heart heal.
Saturday morning I awoke like many other mornings.... In so much pain I wasn't sure how to pull myself out of bed, much less attend the bridal shower of one of my dear friends. Yet my will over took my pain. I shed tears as I got dressed and put in make up. I opted for my hair up as I just couldn't deal with the effort to curl it. Thomas wrapped the gift as I was too weak to even lift it. Thomas and Hayden cancelled their plans knowing I would be calling for an early ride home.
I walked into the shower with gift in hand. A little one year old walked in front of me. I about cried as it meant walking slower and trying to balance my gift and purse. I thought for sure I was going down. Finally making it into the door and bending to set my gift down caused me to almost collapse onto the couch. I sat as people came and talked to me, unable to stand to hug them. I was grateful when I was introduced to another who has health challenges. While everyone else ate and visited, I was able to sit and speak with her about overcoming challenges and received some valuable hints and advice of how to cope with these multiple diseases. She was shocked when I tried to eat a few blueberries and told me I would pay dearly for it later. With internal paralysis. All fruits and vegetables are out. My,body simply cannot digest them. Only fruits allowed....baby food.
The shower went well and Toni Call received many great gifts. I guess I looked awful at the end and Julie rushed over to retrieve me and get me out early as I looked dazed and as if I had just endured a seizure. Honestly, I don't know. I lost time and was so confused. She took me home and I slept for the next four hours.
Thomas said he could hear me calling out for him in my sleep. I kept mumbling. "Not right. Something's really wrong and not right." Thomas couldn't waken me. I was in coma type mode. Alive but unaware. He gave me a blessing since I was mumbling about the fear of something happening. The blessing calmed me and I slept for another three hours sound without yelling for help.
As I awoke, the phone rang. A friend I hadn't spoken to in a year called to ask me a question regarding my small fiber neuropathy. I met her a year ago through a mutual friend. She introduced me to my neurologist, Dr Levine. I tan asked her and told her what was going on. We asked her questions. We talked for over two hours.
What a blessing and tender mercy. I go in in a few hours to discuss immunosuppressant drugs and chemo therapy. Nancy had been in many of the medications the doctors are talking of putting me on. I was so nervous for this appointment. Not sure what to do. Then she calls and we discuss the side effects and benefits. It was comforting. She became deathly ill from the medications but they did calm the disease. That is what I need. Talking to her gave me hope. It gave me light. It helped ease my nerves.
Most of all, I was keenly aware that I was loved. I was remembered. And my Savior was assuring me that he was aware of my situation. He was letting me know he was walking this with me and sent someone to help me understand my symptoms and disease a little more. How kind is he! How tender is he to know I was feeling so alone in this. That I was wondering if I could endure it or could even survive it. And wondering if I was worth it. Man this illness takes a greater mental toll than it does physical. And that is saying a lot for how much this effects my physically.
As I hung up the phone, I located her in Facebook. She then added me to a Small Fiber Neuropathy group in which my doctor is a member. I keep reading. I keep scouring the page for information. I am connecting with those at least facing one of my diseases with me. Someone out there has an idea of what I face. And they struggle and feel inadequate. They too feel so alone. They feel as if their world gets smaller by the weeks and years as people move on with their lives and we are left home bound without many people to talk to. We are forgotten.
As I recalled the events of the day, I found myself on my knees. Gratitude sprung from my heart. Thankfulness. Mercy. Tender mercies and move surrounded me. My Savior knew I needed support. He knew I felt so alone. He knew I was struggling with such life altering and hard decisions. And he led someone to me that could help. That didn't hardly know me but cared. My hope grew. My determination to beat this became more intense. I remembered I fight this for me and Thomas and Hayden. And for my Savior. To show those around members that he does still work miracles. That he is good and kind and loving and merciful. And that with his help, I can do this. Words cannot express the gratitude I felt. I have someone else who understands and that is priceless.