Emma Franklin Emma's Journey

First post: Jan 29, 2021 Latest post: Apr 15, 2024
One morning in March 2020 I made my coffee like any morning, not knowing that things would completely change in my life. I poured my half and half as normal and within 30 minutes I had it thrown up. I totally dismissed it that day just thinking my body was weird. But that was only the beginning and I started to feel sicker and sicker.   We started taking dairy, gluten, and sugar out of my diet. But very slowly my body started to reject really basic foods.  My weight started to fall to a more scary weight and that's when I realized I needed a better plan to keep me going.  

After not having a diagnosis for two years on February 1st of 2022, a vascular surgeon finally diagnosed me with MALS. A rare GI compression. Being rare it's a hard disease to diagnose with the lack of awareness.  On May 30th I had my MALS release surgery where they cut the ligament compressing my celiac artery. But it didn't give me a symptom-free life.  So we are waiting for my insurance to approve coverage for my next surgery in SoCal.  

I've had an NJ tube placed for a month initially and now have a GJ tube. I use the tube to get my food, hydration, and meds. I am followed closely by my care team.
Every day is really different but the goal is to manage symptoms as they come.  Also to stay out of the hospital as much as possible!  I remain hopeful about getting full healing and can't wait to get back to being healthy! I am sharing my story because I believe God does not waste anything and I trust He will use this. I also hope to help those around me to better understand what it's like to live undiagnosed and chronically ill.  But gosh, I can't wait to eat a big burger again with no pain! 

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