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
