Liz’s Story

Site created on October 5, 2020

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Newest Update

Journal entry by Liz Weiers

I’m back. 

November was busy and difficult. I crossed a line - where I once could live despite my symptoms, the illness leaked into my work, devoured my free time, and changed my appearance. I looked sick. I acted sick. 

On November 2nd, I bought a pack of 12 scarves on Amazon. I tied them into tortellini shapes and covered my fruitless scalp. I often wore a winter hat, but for work, the hat seemed too informal. However, healthy people wear hats. Healthy people do not wear square scarves covering the entire head. Even over Zoom, I finally looked sick. 

Weakness prevailed around the same time. Whenever I wasn’t working, I was lying in bed half awake or sitting on the couch with the TV in the background. I still napped over my lunch break and drank caffeine throughout the day just to stay awake. Unfortunately, my malnourished mind dominated and my work suffered. I received great support, but I still hated that I needed it. I hated myself for needing it. 

I decided not to apply to graduate school this year. I simply could not work on the applications. Also, there’s no guarantee that I will be healthy next fall, and the MS programs I was interested in do not allow deferment. I will spend next year healing. 

My mom lost her patience when my hair fell out. She took me to our local Mayo Clinic for a GI referral on Election Day. By the time the election was over, I had seen two gastroenterologists, a dietitian, a few dermatologists, and vials and vials of my blood drained from my elbow. (I will share more about my Mayo experience another time.)

I traveled to Mayo several more times. I met tons of specialists who are probably famous to other specialists. I whipped up and down the Damon parking ramp. I finally got my tube placement scheduled and took a leave from work. 

After the tube placement, I fell sick due to referring syndrome. My body had been starving, and it couldn’t handle proper nutrition anymore. I spent a day in the hospital on a phosphorus IV. 

I am still very sick. The tube won’t fix me right away. I cannot lift boxes of the formula I consume. My mind still isn’t better, and I still weigh 85 pounds. It’s a start, though. I’m back and better than ever. 

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