November is a month of mixed emotions for our family. It is the month that marks my first major surgery four years ago, and the highs and lows that came with it. For this reason, we’re going to dedicate our blog posts this month to one of my first big diagnoses. One of my first rare diseases (or syndromes) —  MALS. To make it interesting, we’re going to tell these stories from both angles: me from the patient side and my mom from the caregiver, having-to-deal-with-the-whole-mess side. They are two completely different stories!  

So today I’ll start with my journey to a diagnosis.  If anyone out there has any of these symptoms, I hope you find this educational!

My health really started to decline at the end of my Senior year of high school. My health had been deteriorating since 9th grade, but this was scary bad. Deathly bad. Don’t tell anyone, but I missed 92 days of my senior year in school. 92 days! Can you believe I even graduated? I was so sick that I couldn’t even sit up or lift a pencil. I didn’t want to move because the pain was excruciating. My mom had to meet with my teachers and arrange with them to allow her to physically do all my homework for me. (Yes, I told her what to say and write, etc.) She’ll be forever irritated at my Interior Design assignment to create a “deconstructed tomato.” She’s not artsy like I am, and I think it just about did her in.

I remember very little from this time of my life. I think it’s the biggest blessing that my brain tends to block out all trauma. I remember going to endless doctors until I found the one who diagnosed me with POTS, and we were still working on coming up with the right cocktail of medicines to help me to function, so I was a complete and total mess. I do however, remember a good chunk of my MALS experience. 

First let me tell you a little bit about MALS:  Median Arcuate Ligament Syndrome. MALS is most common in tall, thin, young women. MALS is a rare compression disorder where the main artery in your stomach (the celiac artery) is compressed by the median arcuate ligament. This means that little to no blood is flowing through your stomach. It also compresses the nerves of the celiac ganglion. This causes all sorts of fun symptoms like nausea, vomiting, pain in your upper belly (when eating, breathing, moving, talking, all the time really), and pain in your chest. 

MALS diagram

In my case, I had a muscle growing over the artery that shouldn’t have been there that was compressing it. I literally had zero blood flow in my stomach, which meant I wasn’t digesting anything. I threw up everything I ate. The nausea and vomiting started my senior year. I remember driving to school and I literally had to hurry and grab a plastic container from behind me and start projectile vomiting in it WHILE I was driving. My poor sister was horrified. It was pouring rain and we had to pull over at a gas station. She only had her permit at the time, but she still drove us the rest of the way to school while I literally just kept vomiting. Don’t tell mom! But I had to be there too because it was the last day of the quarter so I couldn’t miss it or I’d fail one of my classes. 

Oh high school, how I hated you! 

After graduation it kept getting worse and worse. I started refusing to eat because it was so viciously painful and I only threw it back up again. I’m 5’11” and I had gotten down to 102 pounds. 102 pounds at 5’11″!! Some people said I had an eating disorder. Once again, I was the recipient of a million unkind stares and unkind words.

I was so sick I couldn’t even move on my own. My siblings and parents literally had to walk me or carry me to the bathroom. I couldn’t walk.  I had to be pushed in a wheelchair if I ever went anywhere, which I didn’t. I was so frail, it was impossible. My doctor kept wanting me to be put on a feeding tube, but I refused. I was in denial. I’m always in denial if you haven’t picked up on that yet. I didn’t want to admit it was real. I didn’t want to admit that I threw up everything and couldn’t even keep water down. I didn’t want to admit that I started refusing to eat because it was too painful. And no one could figure out what was wrong.  

Fortunately for me, my new-found POTS doctor didn’t automatically dismiss me as so many others had. He loves to research and to learn and to help this community of people with chronic illnesses that others have written off. He told me I was so sick that if I got any worse I would have died. He was the one who finally found and gave me the MALS diagnosis. I was only the second person in Utah to be diagnosed with it. At the time, there wasn’t a surgeon here that could (or would) perform the surgery, so we had to travel to California for it. Twice.

The nightmare of traveling while in such poor physical condition … Ooh! Brutal! That will be next week’s post, so stay tuned.

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Jen

Jen

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