Some people don’t understand the difference between an eating disorder and disordered eating
I’d like to say I know everything about it but I don’t, I know about mine and I’ll share it with you.
I have had a problem with my eating and my digestive system since I was a child.
I’ve been to a gazillion hospitals, had hundreds of upper GI’s, x-rays, ultrasounds, and laparoscopy surgeries. But to no avail.
In the end, I was told the same thing over and over again. It’s in your head, you don’t eat right, you just have to eat a balanced diet and you’ll be fine.
So then, of course, I'm dumped off on a new nutritionist, who would put me on lots of fiber, fruits and vegetables, lean meats, small portions diets.
I was allowed to have meat, but mostly the nutritionist focused on fiber, vegetables, and low-fat, heart smart diets.
It never took long before I would get sick. I would throw up to the point of dehydration and end up in the hospital with pneumonia from all of the Gerd and acid reflux that took place.
The hospital would treat me as if I had an eating disorder and insist I was anorexia or bulimic and so it wasn’t very long before I would be in the mental health ward portion of that hospital to address my eating issues.
This went on for most of my life, but I knew clear down in my gut (pun intended) that I did not have an eating disorder, you see, I love food and I love it when my body is healthy and curvy.
What I didn’t love was being called a liar, crazy or in denial, I didn’t like other people judging me and making me feel less than, and I didn’t like it because I knew they were wrong. I knew I was going to die if I didn’t find somebody to help me!
But that help didn’t come, well not until 2016, and by that time, I was almost 50 years old.
I went septic May 06, 2016, from pneumonia that I didn’t even know I had! I had grown so accustomed to being sick all the time, that, I simply didn’t notice anything unusual.
I went to work that day, I came home, I ate dinner, I laid down. It was common for me to get up several times a night to throw up, so it was just another cruddy night.
I laid back down, and sometime in the next couple hours, I apparently sat up and said my husband’s name and then just threw up blood all over the entire house.
I was unresponsive after that and don’t remember anything.
The ambulance came and took me to the same hospital I always went to, and the same doctors who told me there’s nothing wrong with me were there to greet/torture me, but I don’t remember it Thank God!
This time, they admitted me, not just for the pneumonia but for the sepsis and blood loss.
They were forced to find the underlying cause, finally.
They couldn’t just treat and street me.
This time, they had to do their jobs.
I had several tests to find out the why and where I was losing so much blood, followed by blood transfusions, I had a feeding tube in my nose and was still throwing up because it was going into my stomach, but they wouldn't believe me.
Still no clear diagnosis yet.
I told the staff I was throwing up still, even though I had the tube in my nose, and they said it wasn’t possible for me to do that.
It wasn’t long after that that I slipped back into sepsis and into the critical care unit, unconscious.
I had a feeding tube in my vein that worked when I woke up, but it was not really something that I could actively use on a long-term basis. Too many risk factors for me.
I insisted, finally, after all these years that they tested me until they diagnosed me.
They did what’s called an egg test. It’s not invasive, there’s no surgery, they scramble up some eggs, put a little bit of this radioactive dye in there, I eat the eggs and then they take pictures of how fast my stomach processes the food. When they did that, it showed my stomach was paralyzed and had been for a very long time.
In other words, food would go into this bag ( my stomach)and sit there and just rot.
There is no movement in my stomach, which is why I was sick all the time. I wasn’t diabetic or an opiate addict, so no one ever considered that I had gastroparesis and I never heard of it before.
Turns out that was the problem and sadly I could have been diagnosed decades earlier with that simple egg test before it did permanent damage to my vagus nerve or vice versa…. we don’t know yet which came first. The vagus nerve disorder causing gastroparesis or gastroparesis first vagus nerve disorder later.
I believe it is vagus nerve damage first because I have also developed Aphasia, sounds like the speech a person has after having a stroke, well that’s what I get intermittently or if I don’t take a medicine that I don’t like taking because it’s a benzo and I’m a former drug and alcohol counselor. I know it is a horrible, dangerous drug to be dependent on, but I take it and try very hard to remain grateful that it corrects some of my anxiety disorders and my Aaphasia goes away.
I struggle with resentment towards my own body. I resent having to take a medication just to be able to talk or not throw up all the time and other issues that have come up due to vagus nerve damage or disorder, (don’t know which exactly still).
The bottom line is, I can’t have fiber, and I can’t have fat because they won’t process in my stomach. Instead, they turn into something called bezoars. These are nasty little balls of fat and fiber that calcify inside the stomach and turn into rocks or stones like a kidney stone or gallbladder stone, and they can kill you if the rotten food, sepsis or pneumonia don't get you first.
They put a feeding tube into my lower intestine and took the one out of my nose because it was just going into that bag of rotten food making me even sicker.
I wish I could tell you that was the end and everything got better, but that would not be true. I worked really hard with a nutritionist because I didn’t want that feeding tube, it stuck straight out of my stomach like an elephant trunk and required a pump that I had to wear all day long just to get nutrition into my system. I developed a germ phobia and an anxiety disorder at that point, and soon I was able to have that too removed because I worked so hard, and it was just the beginning. However, fast forward to 2023 and here I am again only this time I have two tubes in me one in my lower intestine and one in my stomach.
I still can’t eat fat and fiber. My stomach is still paralyzed and since January 2023 my tubes have been faulty and replaced multiple times. A person cannot eat for 3 weeks but hydration is an immediate need. So, when I can’t eat anything by mouth because of my esophagus bleeding from the Barrett’s disease that has now taken over 75% of my esophagus and my stomach is paralyzed so nothing gets out if I do put it down my mouth and throat and then throw in the tubes not working correctly so anything I put in those may or may not make it into the lower intestine and could end up just in my body cavity free floating, that’s when I get scared. That’s when water is my only friend. But getting a doctor to immediately get me in to the hospital to fix my tubes even though I have a specialist and everything, it’s like they don’t care or they are just understaffed. One of them actually said. “You know you can put an ice cube up your butt”! I was going to leave that out but they actually said that to me so I’m leaving it in. Anyways I didn’t do it but it’s nice to know I have options, so I suppose LOL.
I did find some doctors who know what they’re doing. But it’s been a very hard year. I’ve lost quite a bit of weight and now they’re going to just take my stomach out because I have rapidly advanced high risk cancer polyps from the esophagus to the very end of my digestive system. (Can i say butt on here? Idk..hmmm). Squirrel, sorry. Anyways, I also got a couple of the polyps in my lungs. I just found out and turns out both of my lungs have collapsed lower lobes and I’m not sure why yet. But, hey, I did quit smoking in July of this year, and you know I expect miracles from that of course, hahaha.
People treat me like I have an eating disorder when the truth is I have “disordered eating”, I want to eat! I want to eat that hamburger! I want you to eat one with me! I want to eat that tomato! Oh my God I want all those foods that I used to take for granted but I can’t have them unless I want to die and there was a time that I did want to die, but not today! I want to live, but I’m not sure if I will, but then that’s just how life is sometimes. I want something until I get it, and then I don’t want it anymore, or I don’t appreciate what I have until it’s gone.
I’m pretty sure I’m not the only one who thinks like this at some point in their life (sarcasm intended). What I am sure of is I’m alive today, I probably will be again tomorrow and with that in mind I plan to live as if that’s it, that’s all I got. I’ve decided quality over quantity is my best friend, neck and neck with water by the way. So, when I wake up in the morning feeling good or bad or however I’m feeling, I make myself look in the mirror and say to my face “I will keep you safe today, and if it looks like I can’t do it without someone else’s help, I will get you help”.
I try to be kind everyday now. Very hard I try to put a smile on somebody’s face, even if it’s only my face hahaha. Most importantly I try to let people in and by that, I mean inside my heart.
So, what came first the chicken or the egg, the gastroparesis or the vagus nerve damage/ disease or eating disorder versus disordered eating? For you? I have no idea. For me? I’m pretty sure my biggest nerve was damaged when I got hit by a car at age 7 and back then I don’t even know if they knew about vagus nerves. I’m sure they did, but in all fairness it’s such a weird little nerve that controls flipping everything that I doubt anybody would expect it in a 7-year-old let alone diagnose me before I was 50.
Given that technology has significantly increased over the years, you know that finally technology has surpassed egos a little bit and doctors are kind of forced to make actual diagnoses. I’m not bashing doctors because they’re saving my life. I’m just saying sometimes their egos are a little bigger than their diplomas that’s all. I should know, I was a counselor for crying out loud and my ego is way huger than my degrees. If you don’t believe that ask somebody that knows me well and knew me because I’m different now. I’m an entirely different Human Than I Was just 3 years ago. I used to think my heart was black and the size of a walnut. Now I know the difference between telling myself crap and that was crap until I tell myself the truth, which is that I am a person worth knowing now. I have not arrived at it yet, but I am headed rapidly towards being the human I want to be.
That’s why I’m worth knowing now so there you go, that’s my story. I started writing this about it a year ago and I just hadn’t had any solution-based information to give anybody at that time. What’s happened in this last year around this has been horribly painful. I’m always on the verge of pneumonia or food poisoning or so much blood loss that I have to have transfusions. I’m in the hospital a lot. I have fevers. I throw up. I can’t poop you know blah blah blah etc etc. Right, so even though it’s been all of that it’s also been very enlightening! I’ve learned so much about myself, my shortcomings, my strong points, my likes and my non likes. I’ve learned that I’m worth knowing. Did I mention that? I did a bunch of times, okay.
I appreciate the people in my life. I have a small but very intimate and strong group of loved ones which includes friends and family. Not all my family sadly. There are two missing that I wish all my heart could know me now instead of just remembering me before but that’s not going to happen. That’s a story all in itself but I know that I’m not as judgmental as I was before. I don’t really tolerate it well from other people anymore like I used to when I would just take it and say okay, whatever you say. Yes, that’s what I am but today I don’t do that.
Today I educate people if the opportunity arises. Or I thank them. Or I say thank you for your feedback. Or you know I’m not rude. I’m not mean. I’m not grumpy all the time. I’m not resetting everybody else for my problems. So, I’m a much happier person with a better disposition. I actually can listen to somebody and hear what they’re saying without practicing what I’m going to say back before they even stop. You know stuff like that.
I don’t know, did the story just go a weird way? Probably. Anyways, long story short there is a difference between eating disorders and disordered eating, and I hope and pray for Anyone who reads this article and especially the ones that read the whole thing concerning my health and pray that you never have to experience any of this because it’s no fun. I would not wish this on my worst enemy.
However, I am very grateful that it happened to me because I don’t like the person I used to be, and nothing changes until something changes right? Well, I don’t like change so I would have just kept being that same rotten person ignorant to my rottenness by the way cuz I actually thought I wasn’t when I was rotten that is. So, yes it sucks and yes it hurts and yes it makes me crazy sometimes but I’d rather that than go on to the rest of my life the way it was before. This opened my eyes to how selfish and self-centered I am, and I say I am instead of I was because I’m still working on it man.
I imagine the day I finally get it all right. That’s probably the day I get to go to heaven. At least that’s what I’m hoping. But I’m not working overtime to try to get there faster, believe that. Remember I got today and probably tomorrow, and I’ll just keep saying that until I don’t. And that’s when I hope everybody just really rejoices because I know where I’m going. I know who’s going to be there and I know I’ll be kicking it with the cool kids:-).
Thanks for reading my article and I hope somebody finds something interesting or funny maybe something helpful. I don’t know, I just wanted people to know that there is a difference between the two and you can’t read a book by its cover always is really true. That’s really all I have. I mean if you’ve read this far you already know about my poor punctuation and grammar so you must be reading it for some reason. I hope it resonates with you somehow. And I hope that way is not because you have any of this achiness in your life but because you’re a colleague or you know you like reading articles with super long titles and subtitles that have skeletons.
I don’t know I’m just glad you read it. Thank you very much and I hope everybody has a great scary Halloween or whatever you all do on this weird funky holiday. I don’t go trick or treating anymore cuz I’m a old B. I can’t get the candy anyways and see I already look really like an old witch, so I don’t even have to dress up the door hahaha! Okay, happy harvest fest Halloween or whatever you call it to everybody. I will be mixing myself up a really great feeding tube pump shake that I can’t taste because it goes into my intestine. Yes, oh wait no I won’t because my J tubes not working right now so I’m going to go get some ice… get it???!!! hahaha. Just kidding. I’m going to get my pump. Good night, everybody. Thanks for reading. Bye!
