Sunday, November 29, 2015

Thanksgiving miracle

The day after Thanksgiving was a day I will ALWAYS remember and cherish. Jodi called and asked if her and josh and JD could stop by for a visit. She said Jake wanted to but was out of town.

I asked why? They have never all come before. Why now? What had Jodi done? I was nervous. I was unsure of why. 

Josh and JD and Jodi came over. We talked. We small talked. We caught up on one another's lives. It was so nice. Then JD said, "should we tell her why we are here?"  I panicked. I couldn't breathe. Jodi pulled something out of her pocket. She talked of my deductible and knew I was trying to ween off medications so that I wouldn't have to stop them cold turkey in January. She wanted me to get the help from doctors I needed. She knew I couldn't due to money. She also knew of my not having our $5000 deductible to get treatment or see doctors or take medications. Just no money. 

Jodi handed me a check for $1,250. Then JD handed me a check for $1,250. Then Josh handed me a check for $1,250. And they told me Jake had written one. $5000. Just because they love me. Because I matter. 

I cried. Tears fell down my checks. My heart could have burst. I talked of miracles. I talked of gratitude in the Savior. I talked of how blessed I have been. And how our Savior answers prayers. Tears fell. No words were spoken besides by me and Jodi. I think I shocked JD and Josh as I was so in awe of the gift but also didn't want to burden them with my issues. I hugged them all. 

As they left, I hit my knees in gratitude. I thanked my Savior for answering my prayer. For inspiring my sister to again help me get the treatment I need to live. I'm grateful for the most loving and caring sister I've ever known. One that feels the spirit and loves me and our Savior with all her heart. 

As I looked at those checks, I felt surrounded in love. Gratitude and hope and peace and blessings indescribable. I'm so appreciative. And I again receive a lifesaving and a miracle greater than I deserve. For that and so much more, I am truly truly, grateful. 

Being strong

Be come to realize how true this is. Although the last week I have shed more tears than I can count, I have again picked my sword back up. I am ready for the fight. I'm grateful for my Savior. Without him, I could not stand. With him, I can be and am fierce. With his love and added strength, I can face whatever lies in front of me and find the strength to keep going. 

Slumber party

Thanksgiving night we had a surprise! Jodi and Troy showed up with tons of delicious and yummy left overs. I couldn't believe how much food that Jodi and Troy and Bruce and Starr generous gave us. Talmage came in the house and disappeared. He wanted to stay. He wanted a slumber party. He didn't feel good and wanted me. 

Oh how I love that sweet boy. We had a slumber party by the Christmas tree. We watched Grinch and Elf and looked at the lights. 

I loved having him with us. I love the joy that is in his eyes and heart. I love his sweet spirit. I love him. He was perfect addition to our Thanksgiving. He is a blessing in our lives. We were thankful to be able to spend time with our little blessings on Thanksgiving. 


We ate Thanksgiving dinner at Lisa and Robert's house. After dinner the guys played games. They played Shanghai and other card games. The girls laid on the couches and just rested and did a little shopping on line.
It just happened that all the girls had plenty of room at the big table while the big ,en were crowded at the small table. We laughed and laughed. 

From left to right: Lisa, me, Cindy Fast, Amber, Katie and Aunt Bobbie.
The small and crowded men's table. Thomas, Hayden, Josh, Chad, Tyler and Mark Fast. 

The day before thanksgiving, Robert found out he had to have open heart surgery. The mood was good despite the looming air. 

We had a wonderful feast full of yummy food and delicious turkey and sides.  Yummy pie. And of course our thirst busters. 

I sure love all these people. I love how they love us. I love the joy they bring to my life. 

I have so much to be thankful for. So very much.

Barro's Pizza

JD and Cassie came to town with their crew right before Thanksgiving. Since it was an off year for Thanksgiving, we got together before for pizza. It was so funny. The adults sat together. The teens and kids gathered in their own groups. They sure are growing up. I love all here sweet nieces and nephews of mine. 

The girl group: Brooklyn, Katelyn and Kiley
The boy group focused on playing Terraria. Hayden with Coby and the. Coby and Bryson. 

The adults and some of he older teens. I love when all five siblings and my dad get together. It is a great time. Having all our spouses is a blessing. I sure lucked out with amazing sister and brother in laws. 

Escape the room

My dad rented out the Escape Adventure facility for all of us to attend the night before Thanksgiving with JD's gang in town. We went into different rooms and tried to escape. They lock you in and you have to find your way out. I was in a team with Thomas, Jodi, Steph, Josh, Casen and Kaylee. Grandpa's team was grandpa and grandma, Bryson, Coby, Brooklyn, Cassie and JD. And Jake and Rosie took Dallin, Austin, Casen, Braden, Hayden , Katelyn and Kiley into the escape the zombie room.

None of us escaped. We came close. But had one lock left before we came out. Bummer. But it was fun. One hour trapped in a room. I sat and wasn't a lot of help but enjoyed watching everyone work together to try to escape. 

I sure love this family of mine. We may be crazy and have our own unique issues and challenges but we are family. And for that, I am very very grateful!!!

Grown up

My son is grown up. He is getting so much older and braver and kinder. He is crazy and fun and full of life. He is so much fun!!! I love all of his crazy antics. I love his love of headphones and music and his phone. He loves Legos and video games and all things computer related. 

He is also helpful and kind. He does the dishes and laundry and even cleans a mean bathroom. He asks how he can help. 

He helps take care of me. He is so gentle with me. His is kind and loving. He has a great relationship with his Savior. He loves him and loves his gospel. He does all he can to live a life as a disciple of Christ. He loves the joy that comes from serving and tries his hardest to do what is right. 

You are one amazing boy, Hayden! I am so grateful I was blessed to be your mother. It is my greatest joy! I love you always and forever!

Big boys

These crazy boys!!! Chad and Hayden are constantly wrestle and playing pranks on one another. They are loud and crazy and full of life. I sure love them like crazy. 

O Christmas Tree

Oh how I love sitting in the dark and watching the twinkling lights of the tree. I love the glow. The gentle glow that reminds me of of the Spirit. It is gentle and calm. It brings peace and hope. It brings joy and calm. 

I love the glow of the lights of the tree. I love the stillness when I sit next to it in silence. I feel the spirit. I feel peace. I have such hope for the future. Such peace. It calms my soul like few things can. 

Putting up the tree

One of my favorite days of the year..... Putting up the tree!

After Thomas and Hayden out up the tree and fluffed the branches, Thomas doubled over and didn't move. I asked if I should call 911. He was holding his head. Oh how he scared me. He only muttered the words, "get someone to give me a blessing!"  I was so scared. 

Thomas had recently given me a blessing. I was struggling to walk and breathe. However, it was amazing how quickly I made it next door. Brother Dove answered the door and I explained the situation. He told me he son had just shown up so they would come immediately. What a blessing he was there. 

The blessing promised Thomas would be okay. That his symptoms would ease. That the intense pressure in his head would calm and his vision would return. 

I was so frightened of losing this man. This man that holds my heart and my world. This man that loves me and sustains me and lifts me. This man that is absolutely the best father and dad around. This man that loves and supports and cherishes his wife. I was so scared. In all of my struggles, I have never feared so much. The thought of surviving without Thomas and I about lost it. 

I'm grateful for a husband that loves me so much. That cherishes his marriage. That regards being a husband and father more than everything. He honors his priesthood and it says so much about him that the first place he would turn is to our Savior. 

I'm so grateful that he was ok. That he is better. That he is such a strong man. I love you with all my heart, Thomas. I'm so grateful to be your wife. 

Friends reunited

Lucky me. I was reunited with great friends at TOFW. 

Lachelle and I go all the way back to nursery. We were friends as littles. Then, reunited in high school and went to MCC together and were roommates at BYU. Oh how I love and adore Lachelle. She has always been a great friend to me. She is a sweetheart and I am so happy I ran into their there. 
It's always great to see Laurel and think of how much fun we had in college working together in the MTC mailroom.  What fun she is and brings to all around her. 

I was also so fortunate to get to see Darce, her sweet sister Sherrine and Renee Jones that I love and adore. We chatted during the event and sat together. Oh how I love them. They are family to me. Darce and I have been friends our entire lives. She knows my story. All of it. She has been a gift always. Renee is the best example of a great friend. My mom has been gone for 28 years. Yet, she continues to be a best friend to her and love us kids and support us in all we do. How lucky are we to have her in our lives. 

Love catching up with lifelong friends. Especially in a gospel setting. 

Life is simply amazing. 

Time out for women

At the beginning of November, I had the amazing opportunity to go to time out for women with my sweet sister, my niece and her cousin. Oh how I loved spending time with my sister. I sure love and adore her and who she is. 

Some of my favorite moments included Brooklyn. After the first speaker, the girls were in heaven. They loved everything said to them. They idolized these amazing men and women that were teaching them to be more Christlike and how to become who they were supposed to be. 

I had talked to Brooklyn about Laurel Christensen Day and how we were friends in college and worked together in the MTC Mailroom. I laughed at the things we did together. 

Brooklyn waited in line to meet her and get her autograph. She said that she was my niece and laurel gave her a huge hug and told her then she must be cool. Then asked where I was. Brooklyn pointed behind her. Laurel hugged me. Then was in awe that Jodi had a daughter the same age when she met Jodi. Time flies by. Brooklyn was in heaven. 

Another favorite moment... On the way home, Brooklyn was talking about how happy she was. Jodi and I talked to her about the Holy Ghost and what she was feeling. She then explained what Laurel had taught her about the Holy Ghost and all the fruits of the spirit. I loved listening to her excited about the gospel. 

I loved the messages. But most of all just loved spending time with my sister. That itself is always a gift. 

Cooking with Grandma

Wednesday's are a fun day. Hayden has a great time with cooking lessons with grandma. They have made incredible meals and delicious goodies. We have laughed and talked. Thomas loves having a homemade meal. Then we sit and talk. We laugh and watch movies. 

Wednesday's at our house are joyous because of this great woman in our lives. We love Grandma and the love she puts into her cooking. 

Happy Halloween

We carved pumpkins, made cookies, decorated, made decor and had a huge Halloween celebration. Halloween night was fun. We had the fire pit. Julie came over and Suzi and Chad. Hayden's friends Gavin, Matthew and Cole came over. Lisa's group and Jodi's group stopped by. And our neighbors came over. We loved catching up with friends and families and the bishop and more. 

Roasting marshmallows and hot dogs was so much fun. We loved making s'mores. We had a wonderful time. It was a great Halloween. 

More doctors. More diagnosis's. More help.

November was filled with doctors appointments and hospital visits. The rheumatologist and urologist along with all the regular visits. 

I get to have bladder surgery and have multiple urological conditions along with the neurological and autoimmune disorders. Some things are related such as neurological bladder and the small fiber neuropathy. But others such as the rumors may not be related. So I start on with new tests, more procedures and more surgical moments. 

I'm grateful for great doctors that make incredible advancements and help me to achieve some pain relief and prolong my life. 

For now, I will try to remain calm and focused and continue to fight. 


Hayden is loving Thursday afternoons with Grandma Julie. They work on the computer, paint, use power tools and create masterpieces such as this steampunked Nerf gun. 

Ward party

Hayden loved the ward Halloween Christmas Party. He dressed as a zombie and handed out candy. He  is really enjoying all activities with the scout and Ward. Happy Halloween. 

Wednesday, November 18, 2015

If Only....

The world of autoimmune and autonomic conditions is a crazy world of constant invalidation, especially in the medical community. How often have I heard, "it's all in your head or stress". If a loved one or friend says those words those invalidation becomes much more devastating and emotionally damaging. 

Imagine dealing with life-altering or life-threatening symptoms but constantly being dismissed as just crazy or attention seeking. 

The emotional cost is unimaginable. And it adds to the magnitude of stress illness already causes. 

When loved ones or friends simply say, "I believe you", all the stress and invalidation a wash away. Being able to be completely honest and authentic with this friend is truly a gift. 

Cost of illness plays out financially, physically, emotionally, and spiritually. Huge guilt sets in when illness takes over your life. Especially because how much your illness effects others. 

Chronic illness is isolating and so very lonely. Feeling all alone is a constant companion. You no longer can attend events, drop by to visit loved ones and friends, go to lunch or dinner or to the movies. No more church activities or kids events. Your entire world consists within the walls of your own home and within the walls of doctors offices and hospitals. 

Support is critical and a life line. Everyone needs support and to know someone is cheering them on and caring if they live or die. The loss of connection is heartbreaking. Calls or texting or dropping by or even a funny joke makes our day. We feel like we matter, that we are still important and we still matter. 

After all, if medical professionals are struggling to crack strange condition, there is no way to expect family and friends or even strangers to fully grasp it. 

But the greatest gift anyone can truly give me is a hug, a smile, a kind word and a simple sentence, "I believe you!" 

Wednesday, November 11, 2015

It's the simple things

Living with an invisible chronic illness is hard. Rough. I look good so therefore I must feel good. I have color in my,face, so I should feel like getting out and conquering the world. 

Some days I wonder what it would be like to have something people could rally around. Cancer, broken leg, surgical procedure or a hole in my stomach. But my sufferings are invisible. Only noticed by those who love me and know me. Only distinguishable by those who spend time with me. 

To most, I look lazy or like a big baby. But my pain, is real. A low heart rate is real. A constant diZiness that makes everything spin. Continual nausea. Intermittent vomiting daily. Pain that is like a stabbing knife. Decreased vision and hearing. Struggling to find the right words. Battling seizures. It is real even though I smile and look ok. 

So a kind word, a ride, a meal, a treat, a card, a text, a phone call, a caring voice, a helping hand, an arm extended to balance me as I am faLling, a sincere question, all matter beyond my ability to express gratitude. The little things ease the burden and give a much needed life line, a reason to keep fighting and the reassurance that even in my disabled body, I still matter. 

My wish for Christmas. Each person would say a kind word or deed to someone with an invisible illness. That is the greatest gift to be given. Belief. Understanding. Caring. A smile. A hug. It lifts spirits and renews hope and encourages the fight to continue. It is a gift that lasts longer than the moment but a something we can grasp onto when life is rough and unbearable. It is a selfless and such needed gift. 

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.