Autoimmune Dysmotility and Me: Part Two

A few months ago, I posted about my struggle with dysmotility, basically a disorder where food does not move through the digestive system appropriately. At the time, we thought it was my stomach. That proved untrue – my stomach is fine.

Turns out it is my esophagus, specifically the lower third that due to nerve damage has stopped working. The esophagus is a muscle and that portion seems to be permanently clenched meaning food does not pass through easily. Food, beverages, medication can back up in the esophagus. Like a traffic jam.

I have one more test to confirm the diagnosis and then, hopefully, can schedule surgery to literally cut open that muscle and stitch it that way. There’s no cure. My esophagus won’t heal, the nerves won’t grow back. Best case scenario is that the surgery hold for a decade and then has to be performed again.

The cause? The best guess is either  virus or an autoimmune disorder. Not clear which one or if it even has a name. Maybe in ten years time they’ll have that figured out.

This has been awful. I’ve lost about 35 pounds. I wasn’t trying to lose it and it isn’t a good thing at all. I eat a cup of food a day if I’m lucky. I always feel like something is stuck in my chest. Sometimes I can’t remember how to swallow. I’m experiencing the side effects of malnutrition. My clothes don’t fit. I have zero energy or stamina.

And I don’t know when this will end. I don’t know how quickly the surgery will be scheduled. It requires a three day stay in the hospital and that sucks. The post surgical procedure is super complicated – weeks of blended/pureed food then slowly reintroducing solid foods per a specific plan.

The worst part besides the physical pain? The worst part is when people tell me “congratulations” on losing weight or perhaps “at least you lost weight” or some such crap. Body shaming culture is vicious. I had a nutritionist say that to me. From a gastroenterologist office. Seriously.

How can you help me deal with an incredibly rare disease? No casseroles, please.

I will need someone to feed my feral cat colony for at least two weeks while I’m in the hospital and early recovery. No date set yet. That’s a morning task. I have all the food, etc.

I also need help winterizing. No one has donated straw yet so I have to have help unloading it and dragging around. Not help, I need someone to do that because I can’t. I need someone to rake, stuff, clean, etc.

For right now, I could use some soup. I am also craving noodle kugle and banana pudding minus the cookies. Mostly, I’m thirsty and tearing through every type of drink possible.

Check in with me every so often.

Check in with Laura.

I would love to borrow some clothes because I have no idea what is going to happen with my weight. I need a few pairs of leggings size L, a few pair of heavy sweat pants size L, and some short and long sleeve basic shirts size L. My sweatshirts are fine baggy. But all of my pants fall off me- I put them on the AM and by noon, they are drooping. I’m sort of worried my winter coats might not be warm because they are so big, but I’ll worry about that in December.

Also, Frappucinos are always welcome.

About the cats … I’ll be counting on all of you to continue with the Cat Food Drive. It is fine to drop food at my house. I’ll find someone to process it.  But even better if you use the wishlists to send food directly to the caretakers.

I’m writing this to make a note. Today I hit a figurative wall and acknowledged that malnutrition is impacting my focus and concentration. If I repeat things, seem zoned out, don’t respond, etc – it is totally me, but not intentional. And if I’ve been a fool these past weeks, that might be part of it.

This sucks.


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