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6:03am
July 5, 2015
Adult Life Tip
Did you know you can buy those cakes at the grocery store without it being your birthday or any celebratory thing? Like you can just walk in and grab a cake and buy it and nobody’s gonna say anything. You can even walk in and get like one of those little kid batman themed cakes (or character of your choice depending on availability) and everyone there is just gonna assume that it’s totally for some small child in your life and meanwhile you get a batman cake all to yourself. Yeah, it’s not gonna be a super fantastic cake since it’s just from the grocery store, but that’s not the point. The point is cake. Cake.
I remember when I discovered that I could buy one of those chocolate creme samplers all for myself for no reason whatsoever, same with cookie dough. It was a revelation.
These days, I can’t eat things without serious consequences (anything I eat has to be possible to drain out of a g-tube quickly, otherwise I get really sick and could even die in the wrong circumstances, not exaggerating) but there was a time when this information would’ve been really cool to know. Right now my food intake is limited to soup broth, and only certain kinds of soup broth at that, so things are different. Plus, I like umami flavors so much more than sweet ones – the older I get the more true that becomes. If I ate the same amount of sugar I could eat as a kid, I’d get sick in ways that have nothing at all to do with my gastroparesis and everything to do with the weird way that kids vs. adults process sugar. Which must suck if you have a serious sweet tooth but your body has changed how much sugar it can handle at a time.
Right now pretty much the only time I crave sugar is when my steroid dose increases at the same time that I miss part of a tube feeding for some reason. That combination makes me go “need sugar NOWWWWWWWWW”. But other than that, sugar actually feels vaguely repulsive a lot of the time. Still, I sort of wish I’d known about this soon after I started getting my first paychecks of my own, because it would’ve been cool to have a cake entirely to myself once in awhile. And I never, ever thought of buying one.
42,534 notes
7:00am
June 17, 2015
![By dierk schaefer (Flickr: [1]) [CC BY 2.0], via Wikimedia Commons[Image description: Five butterflies, four of them much larger than the fifth, eating an orange and other fruit at a butterfly exhibit in Germany.]Please don’t remove the image description, it is intended to let visually impaired people and other screenreader users know what is happening in the photo.](http://40.media.tumblr.com/9ea30ef17a84d8328af9291711571a6e/tumblr_nq3582X5ED1qdmvbuo1_500.jpg)
By dierk schaefer (Flickr: [1]) [CC BY 2.0], via Wikimedia Commons
[Image description: Five butterflies, four of them much larger than the fifth, eating an orange and other fruit at a butterfly exhibit in Germany.]
Please don’t remove the image description, it is intended to let visually impaired people and other screenreader users know what is happening in the photo.
5:21pm
September 14, 2014
Inadvertent reverse cuing while trying to help me eat.
Please see this post for why I am posting various stories about my experiences with assisted typing and other forms of assisted movement. Please don’t just randomly respond to this post without understanding why I’m posting it, and why I’m posting these stories separately instead of all together. (I don’t have the spoons to make one giant post.)
One day, I froze while I was eating lunch. I wanted to finish lunch, and someone decided to help support my arm so I could eat a bowl of… something. I forget what. But instead of just feeding me the food, they wanted me to be feeding myself the food, with assistance, and I was perfectly fine with that. So we set out to do it.
Problem was — and this is not how most people expect this to happen — she had certain expectations about what my movements were going to be. And I found that I could only move within the constraints of how she expected me to move. However — this is the part people don’t understand. It was not that she provided cues that told me where she wanted me to move, and I followed those cues. It wasn’t that at all. That can happen, but that’s not what happened here.
What happened, was that whenever I tried to move in a way she didn’t expect, she made it impossible for me to do it. It was like, suddenly, the support for the movement disappeared every time I tried to do something she didn’t expect me to be doing. This left me with two possibilities: Do absolutely no movement, or move in the ways she expected. See the difference? It was as if I was in a maze, and she provided the walls. And I couldn’t move through the walls. So I could only move down the paths. She didn’t make the paths, and she didn’t push me along the paths. She just made walls so that the paths were the only option.
I believe that happens more in facilitated communication than most people are willing to admit. That it’s not just ‘cueing’ the person to hit certain letters. It’s also making it impossible for the person to hit letters you’re not expecting them to hit. And that can cause just as much of a problem, if not more so.
2:06am
July 23, 2014
Anonymous asked: yesterday you posted about food; coincidentally, i was actually about to ask, if it's okay with you, if eating food can be done when you have a tube. i know it probably varies by person/condition, but say you want to have lunch with a friend; is that doable? what was the issue that made your tube necessary? (i do remember you saying there was quite a battle involved with some ableist doctors.) if these questions are not okay, i apologize.Okay so… I have a GJ tube. That means there’s a tube that goes into my stomach (g tube), and another that goes into my intestines (j tube). My stomach is partially paralyzed (gastroparesis), and that means that food doesn’t leave my stomach, it just sits there. And then it comes back up into my lungs and I get lung infections, especially since I have bronchiectasis which makes it hard to clear infections. So I both have horrible nausea and starvation to deal with, plus the risk of lung infections. So the g-tube exists to drain things out of my stomach, and the j-tube exists so that I can put food and meds directly into my intestines, bypassing my malfunctioning stomach altogether.
I am able to eat food, physically. As in, I can chew and swallow, and the food goes down into my stomach. But then it just sits there and makes me feel sick and nauseated, and I have to drain it out of the g-tube or else I’ll vomit it up eventually, or it will reflux up into my lungs as I sleep, both of which are bad for me.
But there are people who have g-tubes or j-tubes or GJ-tubes for other reasons, who are able to eat some of the time. The tube itself doesn’t interfere with eating. The only thing that interferes with eating is the condition you have to begin with.
Since I’ve gone on higher doses of steroids, I’ve had a problem with compulsive eating, and then I have to drain it all out of my g-tube or I get really sick. I don’t eat a lot – barely anything by most people’s standards – but it’s enough to make me sick, because even my own bile accumulating is enough to make me sick these days. (Which is why I have a drainage bag on my g-tube most of the time, and I also drain it manually at least two to four times a day.)
Most of the time if I go to eat with friends, I chew some of the food and spit it out into some paper towels. I also chew gum, in many different flavors (I love Extra’s “Dessert Delights” because they’re so different from ordinary gum flavors). Both of those things do increase my bile production so I have to be careful, but they allow me to taste the food without swallowing it. And actually I’ve found that chewing gum while I’m emptying my stomach through the g-tube helps a bit sometimes, because it increases both gas and bile and that helps push everything out of the tube.
But basically there’s nothing about this kind of tube that prevents eating. You can eat and it doesn’t mess up the tube. There are other kinds of tubes that would make eating hard, like the kind that go up your nose and down your throat (nasogastric tubes and nasojejunal tubes, NG and NJ respectively) but the kind that are permanently implanted don’t interfere with eating. But usually the condition you have does interfere with eating. But there are actually people who use the feeding tube to supplement their diet for when they can’t eat, and eat the rest of the time, or eat part of their diet and put the rest down the feeding tube, so it’s definitely done. It all depends on the person.
I’m someone who should not be eating at all, but I do eat candies sometimes and I need to stop. My pulmonologist gets very angry with me about this because she says we saved my life and now I’m risking it for something as stupid as candy. But it doesn’t feel stupid when you’re on so much steroids that your food cravings are out of control. I’m starting to learn to control that, but it’s been a struggle. I also try to eat at times of day where I don’t sleep, so that I won’t fall asleep and aspirate. But really I shouldn’t eat at all and I’m trying my best to learn to resist it. My doctor says that it’s very hard to resist the urge to eat when on this many steroids, and that he doesn’t blame me at all because most of his patients on steroids have to deal with this problem.
10:46pm
June 18, 2014
if you feel like you’re starving, you need to eat.
UNLESS you have Prader-Willi syndrome.
that is the only exception to the rule because in that case your hunger-causing hormones are out of whack.
in general hunger is the ONLY good indicator for how much you should be eating.
As someone with some compulsive stuff, I will say other things can mask as hunger, so (at least for me) figuring out if it’s hunger hunger or my brain being a dick hunger is another step for me.
Which is part of why I have a check list that says veggie/fruit, 2 carbs, and a protein (dairy, meat, or meat substitute) so I can figure out if I’ve eaten and what I’ve eaten, which can help me figure out if I need food (as in, I can’t remember if I’ve eaten and if I’m not that headache is not a headache but an ANGRY CALL FOR FOOD, and if so to move to the tension/hydration/migraine check list, not a it is bad if you go over check list) and if so what food consuming needs my body has yet to get that day.
But that is not a universal thing and yeah.
Sparking of I need to make myself stop with the tumblr sometime soon and eat my sub.
Also if you’re on a feeding tube and steroids, everything gets messed up.
If you get behind on your feedings. And your feeding tube is one that does a slow feed, so that you get the entire meal over the course of 24 hours, a few milliliters an hour. Then that means that you’ll be super-super-super-hungry until you catch up.
And if your stomach is paralyzed and the feeding tube is bypassing your stomach into your jejunum, the last thing you want to do when you feel that overwhelming hunger is to eat. Because the food will back up into your lungs, at best. I have learned this the hard way (and my pulmonologist is furious with me, she says that by eating in situations like that I’m basically throwing my life away when we did all this to save it, and she has a point).
So what I do, is I put the feeding tube in, and I start the feeding. Knowing that I won’t feel full for another 12 to 36 hours.
In the meantime, I chew gum.
Lots of gum.
It does have an effect on my stomach, which I have to drain more often, because my stomach produces more fluid and gas when I chew gum.
But, chewing the gum staves off the urge to eat when I shouldn’t eat. And by eat I mean chew and swallow food. Which, without the gum, becomes an urge so overpowering that it’s impossible to resist.
The gum somehow bypasses that and makes me feel as if I’m eating, and then eventually I feel full because my feeding tube food catches up with my actual food intake.
This sort of situation has gotten worse since I’ve gone on steroids, which stimulate the appetite. One reason I had no appetite all that time was I had severe adrenal insufficiency. Dexamethasone stimulates the appetite quite a lot, so now chewing gum is a staple in my house. (I avoid chewing around people with misophonia. I have misophonia myself. I know how horrible gum noises are when it’s not yourself making them.)
I know I get weird looks buying gum with my EBT card, but gum is as essential to my ability to survive as food is essential to most people. Without gum, I would be eating caramels or something, and those caramels would be causing aspirations, and those would be causing pneumonia, and eventually I’d die, and we don’t want that. So gum is absolutely an essential staple in my diet, along with the Osmolite that actually provides the nutrients.
Gum isn’t without its own hazards, but I’m careful to drain my stomach continually while chewing and so far I haven’t aspirated any of the excess gas and fluid that happens as a result of chewing all the time.
But I’m another example of a situation where hunger does not necessarily mean you should eat.
I know it’s almost as obscure as Prader-Willi, but it does exist. And the desire to eat, in this circumstance, is so overwhelming that without gum, I would do anything to get food and eat it. It makes me realize why diets don’t work: Past a point, eating is not a voluntary act, it is a reflex, and we will do it once we become too starved.
In my case the point where I become too starved is when I’ve been fasting for a blood test or something, and then there’s this giant lag time where the food isn’t getting into my body, meanwhile the dexamethasone is sending my body signals going “HUNGRY HUNGRY HUNGRY” and I go frantic with desire to eat something, anything, no matter how ridiculous and impossible the thing might be. And then I either find some gum and chew it (best outcome), or I eat something and risk aspirating (worst outcome – and about half the time I eat something I do aspirate later, even when “eating something” consists of eating a couple caramels that melt in my mouth…then go into my stomach and churn up all the stomach fluids and gases that then jump up into my lungs and go partying there).
So yeah in most instances, if you’re hungry, eat. But in medical situations like this, there may be good reason to be really careful. I am chewing gum right now and I am thrilled that it stops my urge to eat things.
4:46am
June 1, 2014
Anonymous asked: I was wondering if you could go in depth about autistic people who need help doing cretin things like going to the bathroom,washing hair, remembering to eat, ect. You don't really hear about that much I and I would like to learn more about people with autism who have trouble with task that for most people are 'simple'. I often forget to eat/drink because i don't notice I'm hungryHi anon. This is a very big topic that is difficult for me to write about here, seeing as how every autistic person is different and will have different disabilities and difficulties.
There are lots of daily tasks that neurotypical and able bodied people tend to think of as simple or easy but that can pose real challenges for autistic, neuro-atypical, and disabled people. Many of these are what is known as “self care skills”. Personal hygiene (brushing ones teeth, showering/bathing, dressing, etc.) and basic homemaking (preparing food/meals, cleaning counters and sinks, sweeping/vacuuming, maintaining a tidy living environment, etc.) make up most of the “self care skills” people talk about.
There is a stigma surrounding those who, for whatever reason, need assistance or accommodation with self-care skills. This is partly because of a lack of understanding or empathy on the part of the able bodied/neurotypical majority. The able bodied/neurotypical thinking appears to be something like, “I learned to brush my teeth when I was four, and I have never had any trouble brushing my teeth, so idea of someone who does have trouble brushing their teeth is confusing/pitiable/unbelievable to me”.
I think another part of the stigma is that many of the self care skills people talk about were “supposed” to be learned and mastered in childhood. The able majority is all about the normative milestones, and there is a definite link in the average able/neurotypical person’s mind between the mastery of self care skills and adulthood. This means that disabled people who struggle with or who need accommodation to perform self care skills are often infantilized and presumed to be less competent overall, even in areas where they display no disabilities or challenges.
When it comes to autistic people specifically, there are many reasons that self care, like showering or remembering to eat or drink, might be difficult. In my mind the three biggest reasons are sensory processing issues (SPD), executive function issues (executive dysfunction), and comorbid conditions (other disorders or conditions that are also present).
Basically, it comes down to this:
Autistic people have trouble with perception.
Autistic people have trouble with cognition.
Autistic people have trouble with movement.
Autistic people have trouble in every possible way, with every possible connection between the three.
Therefore autistic people can have trouble doing just about anything involving any of those things. Which is just about everything.
I have trouble doing most things on my own. Like I can do them under some circumstances, but not reliably enough to take care of myself. So I have people come in every day to do those things for me.
7:49pm
May 7, 2014
please remember that it is better to eat unhealthily than to not eat at all
4:51pm
November 19, 2013
➸ Real food.
“Real food” is a term I dislike almost as much as “real women,” and for many of the same reasons…Right this minute, there is someone going through chemotherapy shopping at your grocery store, buying popsicles and ice cream to help their sore mouth, and worrying what the cashier is going to think.
There is someone on hemodialysis buying white bread instead of whole wheat, trying to keep their phosphorus levels reasonable between appointments and hoping for the best.
There is a person attending intensive outpatient treatment for their eating disorder who has been challenged by their therapist to buy a Frappuccino.
There are dietitians picking up a dozen different candy bars to eat with their clients, who feel ashamed and guilty about enjoying them.
There is someone who just doesn’t have it in them to cook right now, and this frozen pizza and canned soup will keep them going.
There are people recovering from chronic dieting and semi-starvation who are buying chocolate and chips at their deprived body’s insistence.
All around us are people listening to what their bodies need and attempting to make the best possible choice within a context of overwhelming food pressure. All of their choices are valid, and every single one of these foods is “real.”
This post is so important. This is so, so important.
I want to strangle everyone who uses the term ‘edible food-like substances’.
I do think 'real food’ has a place, but in terms of… like sometimes I said “I can’t eat real food”, by which I meant, my body wouldn’t let me eat sufficient food to get nutrients from (I’m on a feeding tube now), and that was a thing, and that meant something. But that doesn’t mean that I’m defining it for anyone else.
10:01pm
September 8, 2013
Wow maybe that worked.
I was getting super super hungry. And I don’t normally get hungry at all ever anymore.
So I turned up the speed on my feeding tube. Ten minutes later I feel great and am eating imaginary bread and butter. (Being tube fed has given me weird superpowers. If I smell or imagine the taste of food it feels almost as good as eating it.)
And now I feel good. Let’s just hope it stays good and doesn’t nauseate me. My normal speed is 45 and this is 55. I feel kind of weird though so I’m a little worried. But at least I don’t feel hungry anymore?
11:50am
August 8, 2013
➸ Not Enough Spoons: I'm looking for information/advice on feeding tubes.
For those thag don’t know, my gastro problems are eosinophilic gastroenteritis, chronic gastritis, GERD, and IBS. I have tried liquid and elimination diets and nothing has helped. I am currently on Hydroxyzine, Levsin, and Gastrocrom for these. I was just put back on the Gastrocrom a month ago but…
I have gastroparesis. I got my feeding tube for two reasons. One, I couldn’t even keep down more than one Boost a day. Two, fluid built up in my paralyzed stomach, and then backed up into my lungs and gave me pneumonia.
I have what’s called a GJ tube. The g part goes into my stomach. The j part goes into my intestine. Food and meds go into the j part, bypassing my stomach. Because otherwise the food would sit there for days until I threw up. The g tube is used to drain out the fluid that builds up on my stomach. I can do it by hand (just did moments ago), or I can attach a drainage bag that uses suction to pull it out.
Getting the tube was the best thing that ever happened to me. It probably saved my life. I had to fight for it though.
I was in the hospital with pneumonia. Everyone agreed I needed the tube. They just wouldn’t give it to me. They spent all their time trying to talk me into going home and dying. It was bizarre. I finally had to get folks from the internet to call the hospital and tell them not to let me die, and suddenly they agreed to give me the tube, although they made it hard for me.
I had a lot of complications. First the anesthetic didn’t work while they installed it so I felt the whole thing. Then it got lodged in a bad spot and hurt like hell until they fixed it. And I had a lot of diarrhea at first. The j tube half clogged a few times because it’s thin.
But seriously. My life is amazing ever since I got it. I don’t have to think about food or eating. I can drain my stomach whenever the buildup of stomach fluids nauseates me. I’ve only aspirated one time in several months. Which is a huge difference from twice a week. And my weight is finally stable which is a big deal.
Not everyone has to fight the way I did. I was facing a lot of disability prejudice of the “you’re better off dead” kind. It was weird because the feeding tube was their idea, they admitted I wouldn’t survive long without it, and then they wouldn’t give it to me.
But seriously once I got it and got over the first round of side effects my feeding tube has made my life so much better I can’t imagine life without it. It takes a learning curve but after that it’s fairly easy.
9:29pm
June 21, 2013
So my neighbor is still cooking my favorite food ever.
And today I was eating it with one hand, typing for Skype video chat with the other, then of course spitting it into the trash because my stomach no longer tolerates food.
Which fortunately Anne didn’t mind.
But the staff person OTOH has never seen me “eat” before , walks in, looks at the trash, and goes
OMG THAT LOOKS LIKE BARF
Which then sends me and Anne into giggles. I mean it’s not barf. It’s chewed food. But I figure I’d better warn staff in the future. I’ve been lucky so far too only fake eat around people who seemed to know better what to expect. Despite the humor factor, this woman had a stomach bug yesterday and if she hadn’t fully recovered I hate to think what that’d have done to her.
Meanwhile, I still get to taste wonderful food indefinitely. Because these spices stick around forever.
4:02am
June 2, 2013
My friend found a place online where she could order injera. Which is my favorite bread ever. Apparently someone invented a machine that automates making it (it is difficult to make and usually handmade) and is selling it online. So she made a wot to go with it, at around midnight, because she didn’t want to eat the injera alone. And then she brought it to my place and we had a midnight feast. Which we never do and it was amazing.
I can’t actually eat anymore due to gastroparesis (as my followers probably know). So the picture is mostly what I did. I’d suck on the bread like that and then spit it out. Including the wot sometimes. It was really really amazing. There are no Ethiopian restaurants in Vermont so it’s been almost ten years since I’ve eaten this, and it’s my favorite kind of food. When I was a teenager I’d save up my lunch money all week long and then go to a local family-owned restaurant on Friday, where a kid my age was a waitress and I became a regular there.
Weirdly enough sucking and chewing the food and then spitting it out made me feel full eventually. Maybe I was confusing the sensation of being satiated by my feeding tube (which was going through a feeding pump at the same time), with the actions of chewing and sucking on food, to the point I eventually really felt like I’d eaten a meal.
I don’t normally get food cravings but if I haven’t eaten, which I couldn’t in the hospital due to no feeding tube due to them not considering a lack of feeding tube to be an emergency(!), then I start craving food sometimes. So this was the perfect time to do the chew and spit it out routine. Fortunately my friend was not grossed out by this. And now my mouth tastes like injera and wot and I’m happy, even if the actual food is in the trash can and not my stomach.