It has been just under 5 years since the health issues began and I can't believe all that has happened. It's been 5 years of worrying about what I ate, 3 years of fighting to stay alive, 2 years of liquid diets, and over 1 1/2 years of getting up to 4 tubes to keep me alive. Truthfully, I have had many moments of wanting to give up and it has come close more times than I’d like to admit, but I have learned so much from being sick for so long. I have come closer to God, overcome fears, questioned my faith/strengthened my faith, learned to dance in the rain, realized that it was just as important to let others serve me as it was to serve others, and finally that miracles are everywhere.
The Hidden Miracles
I grew up believing that when in the midst of a trial, if I would just look for the light at the end of the tunnel the hard would soon end and I could be happy again. Having 5 rare invisible illnesses has changed my perspective on trials and how to get through them. Some trials do not have a light at the end of the tunnel while on this earth life and that is why it is so crucial to BE HAPPY NOW, to BE HAPPY THROUGH THE STORM! It is also important to look for the hidden miracles because they are everywhere.
They can be big or small, what you've prayed for, something in God's plan for you, the impossible, the people around you, the air that you breathe, and so much more. As I've prayed and fought for the miracle of healing for almost 5 years, I've seen small miracles happening every day.
Here are some miracles that are most important to me…
SUPPORT
*Having the support of family and friends from Cali to Utah and across the states to Indiana
*The person that taught me to let others into my life, to share my story, and to trust
*Those that have helped me spread awareness by sharing my blog, wearing purple, telling my story, and so on
*Technology: online support groups, medical resources, Netflix, social media, my blog, etc.
*2 friends who made it possible for me to fly a plane as well as check off many other things on my bucket list to happy
*The people who connected my mom and I with others struggling with similar health issues
LDS CHURCH/GOSPEL
*Knowing Heavenly Father loves me
*Gaining a testimony that the Savior knows exactly what I'm going through
*Having a ward family to rely on wherever I moved
*The countless prayers in my behalf
TEACHING
*Always being blessed with a job in my chosen career
*The strength to teach most days and having great substitutes for the other days
*Working with the most wonderful children EVER
MEDICAL
*Living in the 21st century where it is possible to be fed through tubes
*Having 3 health insurance plans
*Surprisingly, having doctors who didn't care or listen, which forced me to speak up and fight for my life
*The doctors who have listened, cared, and also thought outside of the box
*Emergency Rooms and hospitals
AND so many other little miracles that have made being alive worth it.
The Miracle that Changed my Life
Above are the miracles behind the MIRACLE that changed my life. August 9, 2016 was a day that changed my perspective on life. As you can imagine over the past 5 years I have had times where I almost didn’t survive… But on August 9th my doctor said I needed to understand that he’d never give up on me, that I should keep living my life as normal as possible, but that he didn’t know how much longer I could survive with my health and that I needed to be prepared for all possible outcomes. As I watched my doctor cry I felt completely alone, but after some time I reminded myself that God had a plan for me, he moved me back to my hometown for a reason, so I had to have faith in Him.
All of this helped me to realize that there were 3 possible BIG MIRACLES that could happen to me and I needed to be okay with the miracle that was in God's plan for me.
Miracle #1: That the doctors would not only diagnose me but find a cure and I'd be healed by modern medicine and faith in God.
Miracle #2: That my body would stabilize where it was at and not continue getting worse, and that I would learn how to live and be happy on tubes for the rest of my life.
Miracle #3: That God would remove me from this life, the pain, the tubes, and my body so that I could be with Him and have peace.
Every day I prayed for one of these miracles to happen because I was deteriorating as I dealt with the pain, nausea, vomiting, and living solely from tubes. I also prayed every day to have the strength to be happy, to dance through the storm, and to focus on others. I fought so hard to stay alive. When my body was so shaky and I couldn't sleep I'd pray to be able to make it through work that day. When I was too tired to start my iv's or feedings I'd cry and then remember that if I didn't do these things it effected the people I loved as well as me and force myself to start them.
I promise that I fought every single day to stay alive and I didn't want to let go, but in December I crashed hard. My stomach was paralyzed (gastroparesis), small intestines were paralyzed (dysautonomia of the small intestine), I had SMA syndrome, POTS, and EDS, and then in December my kidneys stopped functioning. When asked what I wanted for Christmas I realized that what I wanted nobody could give me. As people made their New Years Resolutions, I could only promise that I would keep fighting until January 17th. But I’d lost all hope that January would bring answers. Thankfully all of you had faith and hope when I didn’t, especially my mom! Dr. Anton Bilchik and his fellow Dr. Nelson brought the miracle that I no longer thought possible. They acknowledged the suffering that I had been through, the mistakes that had been made by doctors worsening my condition, and that I did in fact have severe SMA syndrome. He immediately agreed to do surgery and scheduled it for January 19th.
Dr. Bilchik explained that doing a gastrojejunostomy was the best surgical option Gastrojejunostomy Explanation, that I would be hospitalized for 3-7 days after, that it would take months of recovery and retraining, and that he couldn’t promise all of the damage done would be reversed. I was terrified for this surgery because I was weaker than I’d ever been, they were going to cut and reroute my intestines, and because of all of my previous damage they would have to do a half open/half laporscopic surgery.
 |
| Before surgery in my lucky purple get-up... |
 |
| My drawing of what they did surgically... |
Surgery Update from my dad
"The doctor met with Shelley after a 3 1/2 hour surgery, but he feels it went very well. She is in for a long recovery, but he is very optimistic and said her stomach looked good and healthy. He has told them from meeting them on Tuesday that because of the extent of her conditions, it is going to be a long process to recover and begin eating, but he is very optimistic. He was able to use existing tube holes to perform his operation and then was able to clean up her holes and scars so cosmetically it will be better as well. He completely removed one tube, but the feeding tube will remain, for quite some time until she can begin to eat completely normal, which he believes will be the case. She is still in recovery and Shelley is waiting for her to come to. A pain specialist is assigned to her specifically to manage her pain and make her comfortable.
It appears that she is much much closer to her miracle. I need to thank my Heavenly Father and His Son, Jesus Christ for their blessings in Rachel's behalf. Without them, she wouldn't be here and we would have lost her long ago. Without them, former SMA patients and parents would not have contacted Rachel and Shelley to lead them to this amazing surgeon. In the Book of Mormon, Alma 7:11-12 it talks about the Savior and the Atonement. In other words, our Savior did not just go into Gethsemenee to take upon him the sins of the world, but while there, he also suffered every infirmity, disease and pain known to mankind, so that when we pray unto him, he knows, because he suffered and felt it. This scripture, more than any other time in my life comes to full meaning for me as Rachel's daddy. My heart is so full, with love and peace and joy, and gratitude."
 |
| Post surgery: j tube was moved, g tube removed, and intestines rerouted |
 |
| They had to place an IV in my neck for faster access incase of emergency during surgery. |
 |
| Hooked up to the many machines post surgery: IV, Feeding pump, pain pump, vitamin pump |
Within 12 hours after surgery I was keeping down ice chips! My mom was in tears and I was in shock. I couldn’t believe it had worked. The next day I was sipping on broth, Italian ice, and drinking water. Within a few days I was eating mashed potatoes, pudding, and other soft solids. I am now able to eat more and more foods each day. I am learning the foods that do not go over well and the foods that stay down. I no longer have to be gluten free either. J I have had a few relapses, some bad stomach spells, and still have no immune system but this surgery was truly a miracle! I still have gastroparesis, dysautonomia of the small intestine, EDS, and POTS but the SMA syndrome worsened them all. The other illnesses are now manageable because the SMA can no longer pinch my duodenum.
 |
| Me and my picc line after it was removed from my arm on the day I left the hospital!! |
Why did I get blessed with this miracle? Why did my surgeon do the surgery in a different way than others with SMA? I have asked myself these questions and I’ve felt guilty for being so blessed, but I know that I have to be grateful for this miracle and continue to do all I can to spread awareness so that others do not have to suffer as I have. I do know that all of your countless prayers on my behalf have had a huge impact on my life and I will forever be grateful! I get to think about having a normal future, I get to spend more time on this earth with my family and friends, and I get to continue doing the job that I love so much. I promise to never take this miracle for granted and to continue to live every day choosing to be happy through whatever might come my way!
