Searching for the Balance Between Remaining Positive While Being Honest

To be completely honest this post has been 4 months in the making. It probably sounds insane that it has taken me this long, and I know that all of you have been anxiously waiting to learn how I am doing. I am sorry for the wait, but I am so appreciative of your prayers and sweet messages. I especially love ones from my nephews, nieces, and the kiddos that were in my 3^rd grade class this past year. Thank you so much for continuing to encourage me through this journey!

DIARY OF A TUBIE WARRIOR

When I first began sharing my health journey through this blog I didn’t expect to find so many people sending me messages, but I’m in awe… I receive encouraging messages from all of you. J Many of you have shared my story to help spread awareness for not only the diseases that I have but about chronic and invisible illnesses in general.  Some have sent me research and ideas to help with my health and I’ve also been connected through social media with some AMAZING people who have similar cases. What surprised me most has been the number of people messaging with questions about my diseases, symptoms, tests, doctors to see, etc. I love being able to answer all of your questions whether you’re going through something yourself, you know someone who is, or if there are things you want to know more about. 

First, please remember that I’m not a doctor so I can give you facts, personal experience, ideas on what to watch for, and even to just be a sounding board for you. I want you to continue messaging and asking questions but I decided to create an Instagram account called, “Diary of a Tubie Warrior” (name is because of the creativity of a dear friend). I’m also going to begin doing weekly vlogs about each of my diseases, answer questions, and give weekly updates. Feel free to follow my journey as I share more about my day to day experiences, BUT no worries! I will still be updating this blog for any family, friends, and others that would like to be updated more personally about all of this.  I’m nervous to begin vlogging, but I feel that right now my job is to teach others about this so that hopefully they will be able to get answers and solutions faster then I have.

POST-OP MALS SURGERY

The surgery ended up being more complex than expected.  He had to remove a lot of scar tissue, cut out a big piece of my median arcuate ligament because it was abnormally thick, removed a lot of the plexus nerve, miraculously found that I also had GACS (gastric artery compression syndrome) so he fixed this and removed damaged nerve in that area as well, and then replaced my j tube. Overall the surgery was a success though.

I was in recovery and ICU for almost 12 hours after surgery because they couldn’t get my pain and blood pressure under control. Once stabilized I spent the first 5 or so days on a pain pump, they continued my feedings and meds, but I was also being transitioned to oral liquids and then soft foods. I was released after 8 days, but nothing had changed. The pain from eating hadn’t gone away and I wasn’t keeping down much either. We weren’t too worried because we’d been told it could take a couple months before I’d notice any change.

Over the next month my incision opened and had to be closed, I had sutures coming out from inside, ended up with 3 types of infections, and went through 4 rounds of antibiotics. We continued to watch for any changes as I continued the recovery process but I still struggled to keep down much of anything. After about 3 months we began wondering if we had done the correct thing in having the MALS surgery. Other symptoms began getting worse as well so coming to see my Utah doctors was the best option.

OTHER SYMPTOMS

*My hearing was retested and my left ear is now 96% gone permanently and the ringing in that ear is constant.  My right ear was also beginning to have problems while in vertigo as well as ringing.  All that they were able to confirm was that it had something to do with my central nervous system and that I needed to see a specialist ENT in Chicago.  It's scheduled for January.

*The vertigo is now happening daily, I wake up in vertigo, I can be mid conversation and it will hit, the meds no longer work because of the severity of the vertigo, and everything is always blurry.  This also came back as a central nervous system problem. 

*With the vertigo the migraines are also now constant.

*My ability to multi-task has become really difficult, my memory blanks out at times, the passing out happens daily, and many other things in the brain realm right now.  Once again they are all central nervous system related.

*The left side of my body no longer has refluxes and there's numbness and tingling in my left arm and leg.  

*My feedings were now causing intense pain in my lower abdomen and I've now been using Kate Farms Peptide 1.5 formula.  This formula is still causing severe pain, but it has more calories per can than other formulas so I'm able to not do my feedings for as long each day.  For the time being this is what I'm going to keep doing.

For some reason everything was happening on the left side of my body so another brain MRI was done.  They didn't find a tumor, which is a good thing, but they did notice that the left part of my brain is sagging.  This is why they are also having me meet with a near surgeon in Chicago.

UTAH BOUND

CSF LEAKS

I came to Utah to meet with my internist.  He's the one that has helped diagnose me and get me through the past 1 1/2 years. Our 2 hour appointment turned into a 5 hour appointment.  Once he saw me he realized how severe everything had gotten and so he and 2 other doctors helped get all of the testing that I need to have done over the month of December.  He's also began contacting specialists across the country to get me into them ASAP.

I found out that all of these left side symptoms, the worsening vertigo, memory, migraines, etc. were all due to my CSF leaks in my spine.  He tested 11 points on my left side and then confirmed i had all 11.  I didn't even realize that the left side of my face was sagging as well as numb. For now thankfully all of the symptoms are on the left side, but it could begin spreading to the right side.  Thankfully we know what to look for now and I have an amazing doctor who's doing all he can to help me through this.

Over the next 3 weeks I will have one blood patch done each week on my spine.  He knows this won't work, but we have to prove it won't before I can head to the CSF Neuro surgeon at Duke.  He's already been in contact with the surgeon so we hope I'll be able to get into him soon.

CSF & MALS

From the research that my internist and a few MALS surgeons across the country they've found that those that have both are the ones that end up needing to have a MALS revision surgery or the more extensive original MALS surgery.  Yesterday I had a CTA/ultrasound done for the 3rd time to confirm that I am still having MALS issues.  On the 20th I will have another celiac plexus nerve block done on my spine to see if it takes away any pain in my upper abdomen.  All of these results will be sent to the MALS revision surgeon in Connecticut.  So I will be going there after Duke.  Hopefully once they've dealt with both, some of the left side issues will improve as well as the intense stomach pain whenever I eat or drink anything.

G TUBE SURGERY

Today I will be heading to IMC to have a g tube placed back in my stomach.  This time he will be placing a thicker tube and they're going to keep it open to allow my stomach to decompress.  Normally this would be a simple procedure, but with everything else it's going to be a bit more risky so I will be admitted post surgery until I'm stabilized.  I'm a little nervous, but I am also excited to have this back in because it will help with my vomiting and intense pain all of the time.  My family will keep everyone updated on how I'm doing post surgery, and I will once I'm able .

TPN

As for the intense pain when I do feedings they've found that the paralysis has spread through my entire small intestine.  Once I'm back to Indiana I will be admitted to the hospital and they'll transition me from feedings to doing TPN through my port.  This will be how I receive my nutrition and will allow my stomach and intestines a break.  I will also continue doing 2 saline bags every day to help keep me hydrated.  They have also began transitioning some of my meds from my feeding tube to my port.  Hopefully by doing this my stomach and small intestine might have a chance of regaining some motility in my digestive tract. 

It's possible that the spreading paralysis is due to the CSF leaks and that once again it is central nervous system related.  Right now my family and I are just trying to take it one day at a time.  I was terrified flying here alone even though I had help the entire way.  I'm used to my parents and brother helping me if something happens to me while in the airport or flying.  My mom reminded me that I'd have friends and family helping me along the way.  She also told me to focus on the people that I would get to see while I am here.  

THANK YOU

It's been so amazing to get to spend time with some of my good friends in northern Utah and once I'm out of the hospital from surgery I get to head down to what I still consider my home. I can't wait to see my family, nephews and niece, and the amazing students that I've missed every single day.  Every day I wish that I could be doing what I love so much, which is teaching amazing children.  I know that I will have tubes for the rest of my life and I'm coming to terms with that.  I can teach with tubes and live without being able to eat food very often or at all, and that is why I will go to Duke, Connecticut, Chicago, and possible Michigan.  

Thank you for your prayers, your messages, letters, calls, your friendship, and for making my world just a little bit brighter.  It's always on the most difficult days that I hear from one of you.  Thank you for lighting my world! I am sorry that I haven't been able to explain until now.  It's been hard for me to process all that has been happening, but I will keep trying my best to keep you all informed as well as continuing to help spread awareness for all of this so that others might be able to find answers sooner.  

P.S.  Sorry for no pictures but  I was in a rush today so I'll add them in the next post. 

Gastroparesis Awareness Month-A Pie in the Face for GP

August is Gastroparesis Awareness Month as well as Digestive Tract Paralysis Awareness.  As you know I have gastroparesis as well as small intestine paralysis and this past year have been diagnosed with many diseases that are hopefully the underlying cause for my GP and DTP.  Being diagnosed with GP is a relief at first because you finally have a name for what's happening with your body, but little is known about GP and so most treatments focus only on helping with the symptoms related.  There is no known cure for GP, but there is hope when doctors are able to find the underlying cause.  I have been so blessed to have a doctor who has done more for me than just treating my symptoms.  He has researched, collaborated with other doctors, and run every test he could think of.  Because of him I know that my GP and DTP most likely are symptoms of having SMAS and MALS.

I have been given answers and hope that someday my digestive system could work again and allow me to keep down food!  But there are so many out there that have GP or DTP and don't know it, or have been diagnosed and are treating the symptoms but don't have a doctor that knows what to test for to figure out why they have these issues.  G-Pact is an amazing organization that specializes in GP and DTP research.  They are doing studies to try to find similarities between cases, what to look for, and give those dealing with these issues a place to search for specialists that might be able to help them.  www.g-pact.org has a place where those that are able can donate to help fund the research that they are doing.  It is also where the money raised from #GPPieFaceChallenge is going.

I made a short video that tells a little bit of my journey through all of this as well as to help spread awareness this month.  I know that you've all been so great through all of this with keeping my family and I in your prayers and with helping to spread awareness for the different diseases that I have.  I am so grateful for all that you have done.  Next week I go in for surgery and will be out of commission for awhile so I will not be able to be a big advocate for GP this month.  I'm going to do the #GPPieFaceChallenge one more time before surgery and then I'm hoping that you all can keep the challenge going through-out the month of August!  I will nominate as many people as I can, but if you see the video or this post consider yourself nominated. :) It is really simple to do.  All you need is a can of whipped cream and a paper plate.  You get to nominate as many people as you want and then smash the pie in your face, share it on social media with the #GPPieFaceChallenge, and then if able to donate to help fund research at www.g-pact.org

Click here for the video: Rachel's Health Journey Video

To Having Faith in God's Plan for Me

I began writing about my health journey just over a year ago.  I decided to share my health journey with all of you for a few different reasons.  First, I wanted to be able to help others struggling with similar health issues so that I could be a support to them in whatever way possible.  I also wanted to be able to connect with others struggling so that I could receive support and help from them.  But the main reason I began writing about my journey is because writing has been a way for me to process, cope, and also to keep all of you updated on my health journey.  Thank you for taking the time to stay updated and for all of your kind words and prayers! :)

I have started writing this post at least 15 times, but this has been the update that I have dreaded. January brought a lot of hope for myself, family, friends, and community.  The gastrojejunostomy surgery was a miracle: the timing, the surgeon, the hope that came with it, gaining the ability to keep down liquids and some soft foods, it made it possible for me to finish the year with my class, and most importantly it saved my life.  It blessed me in so many ways, but it wasn't the cure that we'd hoped for and so I've had to make some changes in my life.

One change in particular has been painful.  Here is why...Being a teacher is a HUGE part of who I am.  I was born to be a teacher and to work with children.  Heavenly Father gave me the gift to be able to connect with children in a way that I can't even explain.  There are so many teachers out there that are better then I am, but I do know that I was born to teach children.  This gift that He gave me is one that I cherish! Teaching has been everything that I've worked for, it is what I have dreamed about, and I've fought through my illnesses because my students have ALWAYS made it worth it.  I know that my students aren't my kids, I'm not their mother, but to me my students are my children during the day and each year I love every single one of them! That being said, my class this past year had/has/will always have a special place in my heart. 😍

My heart is broken, I'm in denial, and I wish with every fiber of my being that I could continue teaching next year but my doctors, parents, and I have decided that I need to take some time to focus solely on my health.  It isn't fair for children having to deal with a teacher who is too ill to teach, missing so much work for health reasons, and also not fair for my family to continue sacrificing everything for both my health and my job.  Before deciding I prayed fervently, read the scriptures, listened to many conference talks, and sat on the phone with my mom for hours debating the options.  I found my dream job, my dream small town to live in, met so many friends and wonderful children, and I am saying good-bye to all of this so that I can focus solely on my health.  I know that I need to do this, so I have to have faith that this is God's plan and that hopefully one day I'll be able to teach again hopefully back at my dream job. 

My family and I placed my classroom supplies and most of what I own in a storage unit.  My parents drove my car out with what I would need to live with. On July 10th I flew out to meet and live with my parents.  It has been difficult, but I have to have faith in God's plan for me.

UPDATE ON HEALTH

Eating:
Before January I couldn't eat or drink anything and keep it down.  Since then I went through a period of time where I could keep down most anything and would only have "Rachel's Law Days" about once a week.  As the months have progressed keeping food down has become more difficult.  I do my feedings at night, drink a lot of Pediasure and water during the day, and I try to eat one thing every day and just see how it goes. :)

Port:
My veins can no longer handle being pricked and prodded and so my internist recommended that I get a port placed to receive iron infusions and IV Saline Hydration.  I was terrified because it is an awake procedure and the last time they did an awake procedure it did not go well.  The lidocaine shots and IV meds didn't work and so I felt the g tube placement.  I had to get my port placed at the same hospital and so I was very nervous.  They were able to use lidocaine, bupvidocaine, and fentanyl to help with pain management as they placed the port.  It went well and now I am back to 2 tubes.  When the port isn't accessed I am able to swim, get it wet, and keep it hidden.  This is what I love about the port over a picc line.

Median Arcuate Ligament Syndrome (MALS):
My internist has been working on managing my pain, nausea, treating all of my acronyms (diseases), and trying to find the cause of everything.  In May he received a phone call from the California surgeon and was informed that the scan I'd received for SMAS and MALS wasn't 100% accurate and that he assumed I also had MALS.  They redid the scan the first week in June and then did a Celiac Plexus Nerve Block to see if that would relieve the pain.  I HAD 18 HOURS OF NO STOMACH PAIN! 🙌 This confirmed that I did in fact have MALS and would need another surgery in California to fix this. MALS or Median Arcuate Ligament Syndrome is a rare disease.  Basically the celiac artery that branches off of the heart sends blood and oxygen to the digestive organs, but with MALS that artery is being constricted by the median arcuate ligament as it wraps around the heart.

I meet with the surgeon August 8th and surgery is August 9th in Santa Monica, CA.  He will open me up from the top of my chest to about my belly button and crack the chest open, and fix the constriction so that the celiac artery and celiac nerve can begin healing.  The surgeon and internist are optimistic that if surgery goes well I will begin to see improvement after the first few months and could possibly be back to my old self in 8-12 months.

Vertigo and CSF Spinal Leaks:
Vertigo has become much more common in my life the past 4 months.  The hearing loss in my left ear is 24/7 and the ringing in my ear is constant as well.  I am getting used to living with severe migraines and neck pain.  Migraines plus hearing loss were my normal indicators that the vertigo was coming on so this has made it harder for me to be prepared for vertigo.  I'm now always in some form of vertigo but it usually becomes full blown a few times a week.  The doctor says that the more I stand or sit upright the worse the vertigo is going to be.  He found CSF leaks in my upper neck and lower spine. There is a CSF Specialist at Cleveland Clinic that we are hoping to get into to help with this.

HAVING FAITH:

It has been over 5 years of being ill, 5 years of doctors and hospitals, times full of hope and times where hope seems lost, moments where I feel I can conquer the world and times where I have to rely on others to keep me going, BUT in those moments where I feel alone I am reminded of a poem that I was given in my high school LDS Seminary class.  It is titled, "Footprints in the Sand."

On days where life seems easy and when everything is going our way, it is easy to remember that God loves us and is with us.  BUT it is on those days where we feel lost, helpless, alone, etc. that we need to remember that the Savior knows exactly what we are going through because He atoned for each of our sins, pains, weaknesses, feelings, and trials.  He is the one person that KNOWS EXACTLY what we are going through and He will never abandon us.  Those are the moments where the Savior is carrying us. "He'll Carry You" song by Hillary Weeks

Gastroparesis Pie Face Challenge

Think back to a couple of years ago.  You probably participated or watched many people dump ice water on themselves for the ALS Ice Bucket Challenge.  It spread awareness throughout the world and also helped to get more funding for researching ALS.  Hopefully someday they will be able to find a cure.  ALS sadly is one of many rare diseases that have no cure.  I am one of many around the world that suffer from a rare incurable disease.  Actually, I have 5 rare motility disorders, but today I am going to focus on the one that started it all... Gastroparesis.

Gastroparesis is a rare motility disorder that effects the way the food moves through your stomach.  Basically, your stomach is paralyzed.  Symptoms of this disease are nausea, getting full after only a few bites of food, intense pain in the upper abdomen, vomiting, and malnutrition.  Many end up living off of feeding tubes or TPN because they are not able to receive nourishment through food. This disease is not well known (even in the medical field), under researched, has no cure, and many that suffer from this have no idea why they got sick.  Sadly, some have even passed away due to complications from GP.

For me, I got what I thought was the stomach flu just over 5 years ago, but it never went away.  It took two years of changing my diet, 6 doctors passing me off to the next one, multiple tests, weekend ER visits to get rehydrated so that I could teach the next week, and WebMD before I was diagnosed.  I'd been sick for two years when I collapsed while teaching and was rushed to the hospital where a friend found GP on WebMD.  She had to beg the doctors to test me for it and then I had to wait for them to figure out how to even do the test before I was finally diagnosed.

My mom and I were ecstatic because there was a name for this disease.  We soon learned that there was no cure and the doctors had no idea why I had this disease.  All they could do was treat the symptoms.  Over the next 2 1/2 years I would have ups and downs but eventually I ended up with 4 tubes to keep me alive.  A feeding tube, decompression tube, and a double picc line for IV hydration. I couldn't eat, drink, take meds orally, or even chew gum without vomiting.  Even without eating anything I would vomit 5-20 times a day.

My brother came up with his own name for it, "Rachel's Law".  Watch below to see his explanation of Rachel's Law. :)

This disease impacts not only me but also my parents, siblings, nieces and nephews, friends, students, and employers.  I have been so blessed to have so many loving people around me praying for me, helping me, and fighting for me.  To all of you I ask you to please help spread awareness of GP.

By participating in the GP Pie Face Challenge you will not only be helping me to hopefully receive answers for WHY I have this someday, but also for all of the other people around the world who are suffering with this disease and have no answers or who have the symptoms but didn't know the name for what they're going through.

Participating is easy...

1. Videotape yourself smashing a pie in your face after explaining what GP is
2. Nominate at least 3 people to participate (including someone well known is a bonus)
3. Post your video to the GP Pie Face Challenge Facebook page as well as on every social media site possible
4. If you are able, donate to G-Pact so that they can continue researching these motility disorders

WHY a pie in the face?  Well people with GP tend to fear food because of what it does to them.  For many food is no longer enjoyable, but yet we need it to survive.  Social activities almost always include food and so it makes going out with friends difficult at times.  For us, it feels like pies are constantly being smashed into our faces as many are terrified of eating.  That is why it is the GP Pie Face Challenge.

I was nominated by a dear friend who also suffers from this disease, but before I would participate I did my research on the legitimacy of both the challenge as well as donating to G-Pact.  I am proud to say that the challenge is spreading and that G-Pact is the best place to donate because they are dedicated to helping us find doctors who know how to treat this disease as well as to researching this disease.  With your help maybe someday soon G-Pact can find the answer as to WHY people are getting idiopathic gastroparesis.

As I debated over doing this, I had a line from a tv show that kept eating at me.  The show is called When Calls the Heart and it is on the Hallmark Channel.  I love this show because it is wholesome, family oriented, and about a teacher in the early 1900's.  The line was, "BAD THINGS HAPPEN IF GOOD PEOPLE DO NOTHING."  I can not sit silently and let others go undiagnosed so today I am doing something.

Here is the link to my video: GP Pie Face Challenge
If you see this consider yourself nominated.  If you really do not want to smash a pie in your face, then please share this on every social media site possible to help spread awareness for GP.

The Miracles Behind the MIRACLE...

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 17^th.  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 19^th. 

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! 

"If Life Get's Too Hard to Stand... KNEEL"

I'm sorry that I haven't updated in quite some time. The past few months I've had to make the decision to only do what was most important to me because it was all I had energy for. I chose to focus my energy on my job and doing the POTS treatment that my internist had me begin on October 26th. It has been getting more difficult to do the simple things that I used to be able to do without even thinking the past few months. I think back to the big run I did May 28, 2016 and I have no idea how I survived that run. I'm so grateful for having accomplished that and hope to one day do so again, but for now I am trying to do exactly what the doctors tell me to do.

QUICK UPDATE-I had a second j feeding tube placed in November. That surgery went well and I was excited to begin receiving nutrition again after almost 2 weeks of nothing.

-I ended up in an ER in North Carolina while visiting family over Christmas break. I was then admitted because of abnormalities in my abdomen. It ended up being a ruptured ulcer, which caused air to be in my biliary sphincter (bowel). They did an endoscopy and cleaned out scar tissue in my esophagus, duodenum, and checked for holes in my stomach and bowel. The best part was when my mom accidentally pushed the CODE BLUE BUTTON and we hear everyone in the halls yelling, "Where's the crash cart?"  It was an entertaining moment as my mom ran out to tell them that I was breathing just fine. 

-The past week my left knee has began to swell and I've struggled to bend it.  It seems like it is filling with fluid of some sort.  I've tried icing and heating, but it continues to swell more each day.  This could be another symptom of POTS.  Hopefully we will hear from my internist soon.

January 17thI was able to get into a specialist on January 17th in California. My mom is headed with me to meet with this surgeon. He is a specialist with SMA syndrome and we are hoping for the possibility of surgery to help increase blood flow through my organs and bring some relief. This is one of the genetic diseases that I was diagnosed with in September of 2016.  

SMA Syndrome Explanation

As my health has continued to worsen instead of improve, I would be so grateful for your thoughts and prayers that January 17th is a day of answers for my mom and I. Me being sick has not only effected me, but it has had a huge impact on my family, especially my mom.

This quote reminds me of my mom and how much she has sacrificed for me the past 5 years.  I don't know what it is like to be a mom and have a child that is ill, but I do know that my mom goes above and beyond every day to make sure that I am not going through this alone.  I also know that she and my dad would take my pain away in a heartbeat and go through it themselves.  I hope to someday be able to experience that kind of love for children of my own.  I know that I've been in all of your prayers and I will be forever grateful for that, but I ask now that you not only keep me in your prayers but also my family and my mom. Help to give them the strength to go through this with me.

Thank you all for being so willing to help with rides, being a friend, a positive example, for having faith and hope when I've struggled to, giving me blessings, putting my name in the temple, and so much more. Tomorrow is going to be a big day. I'll keep you all posted as we find out news.

Tube Surgery #3

I know that I haven't been great at updating everyone lately and I am very sorry for that.  My energy level has really decreased the past month as I've become more malnourished and so I've been focusing solely on making it through work each day.  I will update you more on POTS and the treatment plan that began October 26th later this week.

TUBE SURGERY #3

So this happened on November 11th.

If you can't tell that is my j tube in my hand and not in my abdomen.  I've been trying really hard not to be angry at the mistakes that have been made, which have led to my tube being removed, and that is also why I have chosen not to post until now.  I know that the only person to ever walk this earth perfectly was the Savior, so how can I expect doctors to not make mistakes?  I am still angry, frustrated, exhausted, and every other emotion possible at these two doctors, but I also know that they have always tried to do what was in my best interest.  I have to put my trust in them to have a new tube placed on November 22nd so that I can begin receiving nutrition again, being angry won't get me anywhere.  I have had a choice to make: I can go in angry with them and not feel peace or I can go in having faith in God's plan.  He has kept me alive too many times to count when the odd's have not been in my favor and I received a blessing tonight that reminded me to focus on the peace that comes from God and in His plan for me.

Am I terrified to be having a third tube surgery? Yes.  Am I afraid that it might not go as planned? Yes.  Am I anxious about having three holes in my abdomen?  Yes.  But I do not have a choice in getting the surgery.  This tube is what will keep me alive and will give me the nourishment that I need to begin the treatment plan for my POTS, SMA syndrome, and vagas nerve damage.  

THANK YOU

This week is Thanksgiving and I am just so grateful to the home health nurses that check on me even when they are off the clock.  I am also thankful for my sister-in-law, who is there for me whenever I need her and who sacrifices her time to be with me at doctors so that I don't have to be alone.  Also, to the friends who have given their time to take me to doctors and to come visit me from Salt Lake.  I am grateful for all of the prayers that you are saying in my favor, and for those that have had faith for me when I have felt like giving up.  It has been one crazy roller coaster for almost 5 years now and yet I can still walk around with a smile on my face and with the knowledge that God is constantly blessing me with little miracles.  All I have to do is open my eyes to see them.  

Tomorrow I will have surgery to get a new j feeding tube and I know that because of your prayers and faith that all will go as God has planned.  Thank you for going through this journey with me.  I promise to try and update you more.  I know that you want to stay informed.  I just want to make sure that this blog is a positive place for me to share my journey and that I am striving to find joy in the circumstance, and not using this as a place to vent my frustrations.  Have a Happy Thanksgiving!