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.

27 notes

7:08am May 27, 2015

Maybe.  But I’m sure there’s other things to wrap around them besides bacon – I’m just not a huge fan of bacon.

8 notes

5:39am May 27, 2015

foodffs:

Goat Cheese Stuffed Mushrooms Wrapped in Bacon

Really nice recipes. Every hour.

Show me what you cooked!

I’d love that, but probably without the bacon.  I’d try it even with the bacon though, I just feel like the bacon would overpower the mushroom taste. 

1,654 notes

1:32pm April 12, 2015

As far as comfort foods go, little can beat fresh red miso soup broth made with fresh miso paste. Way better than chicken broth or chicken stock. And it drains out my feeding tube super easy and calms my stomach besides.

11 notes

1:01pm March 20, 2015

Soooooooup

I am so glad I discovered that I can eat soup and have it drain out my g-tube.  It is completely solving my steroid-hunger problems.  They now sell all kinds of soup broths in the store, in boxes, you just pour it out and put it in the microwave, instant soup.  And very few of them have anything large enough to clog the tube with.

Today I also discovered if I take potato soup and pre-grated Parmesan cheese I can melt the Parmesan into the soup and it tastes amazing.

I could live without ever eating again, I know I could, but it wouldn’t be near as much fun.

So far my favorite flavor is potato leek.  I haven’t tried the parmesan in that yet, I used a different potato broth for this.  I like savory soups better than sweet ones, just as I like savory food better than sweet food in general.  Umami FTW!

29 notes

3:45am March 18, 2015

alliecat-person:

ajax-daughter-of-telamon Also, languages become spoken less due to a lot of…

Czech vanished from my family within a generation; my great grandmother spoke little English, my grandma spoke to her in Czech but only ever spoke English to my mom :(

Seems to be the way it goes, often.

My friend’s parents spoke Slovak in front of the kids, but mostly in the same way that most families spell in front of kids, or geeky families like mine use Morse code in front of the kids (who then learned Morse code).  My friend speaks a tiny bit of Slovak but I’m sure she wishes she spoke more.

(Okay my brain is way too much on food after missing a few days worth of tube feedings.  I can’t get the idea of sauerkraut pierogi out of my head.  My friend used to make it for me all the time.  And she’d have me bake Slovak breads because she said I could bake better than she could.  Now I’m going to have to go warm up some potato leek soup broth, which should drain out of my feeding tube just fine.  It’s the closest thing to umami I can get right now.  But sauerkraut soup, which my friend also made, sounds amazing.  But also tube-clogging.)

8 notes

8:06pm March 1, 2015

Obligatory cringeworthy Girl Scout camp for disabled kids (and nondisabled kids, but you couldn’t tell the difference, at least I couldn’t) patch says “come fly with us” and embroidered picture of a kid in a wheelchair holding balloons making them fly out of the chair. Camper reactions to it ranged from “meh whatever”, to “WTF are they serious?”

Favorite moment: Playing on top of spaghetti with a powerchair user as the meatball since she could roll… And she turned on her fastest speed and started trying to run people over. Which I would do too if anyone hung a sign around my neck saying”MEATBALL” in huge letters as my entire “costume’

12 notes

9:48pm November 28, 2014

Amazing butternut squash broth.

12 notes

4:52pm November 27, 2014

It is perfectly possible to make unsalted food flavorful and tasty.

These people didn’t bother.

So I’d gotten three kinds of vegetable bouillon cubes, all by the same company, all with the same basic cube, just slightly different ingredients. One had no salt, one had sea salt, and one had herbs and presumably regular salt.

The one with no salt wasn’t totally disgusting, but it wasn’t good, either.

The thing is… I lived with my father growing up when he, and thus the rest of the family by default, went on a low sodium diet. And there are things you can do to make food not taste like cardboard, besides add salt to it. There are all kinds of spices. Even garlic powder can work wonders.

But these people apparently didn’t care that much about making sure that their low-sodium-eating customers were getting something tasty, because that was… not tasty. At all. I had to force myself to finish it. I will be quite happy when it drains into my bag in a minute, just to literally get it out of my system as fast as possible. Yuck. I think I’ll have to literally add salt from a salt shaker if I eat it again.

8 notes

2:19am November 27, 2014

UMAMI Midnight snack, gastroparesis edition

Broth is completely safe for me as long as I drink it in moderation. It goes right in me and right out my g-tube just like when I drink ginger ale to help drain my stomach (long story, you don’t want to know while I’m talking about food).

So yesterday I went out to the store and bought:

* Vegetable bouillon cubes without salt
* Vegetable bouillon cubes with sea salt
* Vegetable bouillon cubes with herbs
* Beef bouillon cubes
* Chicken bouillon cubes
* Miso soup mix (I’ll strain out any solids and drink the broth)

All this time with a feeding tube, the one taste I’ve craved above all others is umami. Umami is my favorite flavor hands down. If all the food I had to eat for the rest of my life was umami, I would not have a problem eating it.

And the preparation is so simple that even I can handle it, on a good day executive function-wise (and I know even this can be hard – it can for me too – but sometimes it is relatively easy):

1. Put bouillon cube in cup.
2. Put water in cup.
3. Put cup in microwave.
4. Press “Beverage”
5. Wait for microwave to bleep.
6. Take cup out.
7. Break up remaining bouillon cube parts with fork
8. Stir vigorously
9. Wait until temperature is right (this is the hardest part for me, the physical impulse to grab the cup and drink is stronger than the rational impulse to wait).
10. Drink.
11. Don’t lie down for quite awhile, wait for it to be drained from my system a bit first.

In the time it’s taken me to write this post, a quarter of what I just drank has been drained into my drainage bag, and it’s still going. So aspiration risk is low. And as I said, I’ve already drank this amount of liquid before, just not flavored in this form. So this isn’t new territory except for the amazing wonderful umami taste.

BTW, so far my favorites are the vegetable herb cubes and the beef cubes. I think the miso may end up being my favorite (and if it is, I might want to look into getting that miso paste that people make miso soup out of) but I haven’t tried that yet. I generally like red miso, and I think that’s what I got from the picture on the cover, even though it didn’t specifically say.

15 notes

2:37am November 24, 2014

I am craving koshary so bad right now…

…and there’s no way I could ever, ever eat it. I’m discovering the only things “safe” for me to eat are very clear soup broths with no solids at all, not even tiny solids. Everything else screws up my tube or my lungs or both. But koshary…. oh WOW does it sound good, every last layer of it. Also, chicken paprikash. And corn bread (the real kind, not this weird sweetened cake-like stuff they serve in the North). And Hoppin John. And the Vegetarian Combination platter at Shebele’s Ethiopian restaurant. And just about anything heavily umami.

5 notes

9:21am August 13, 2014

karalianne:

piggieproblems:

Look at my baby girls getting along!  Yay!!! ♥ ♥ ♥ 

Cookie still can’t quite get over how hyper Biscotti is, but they both get excited when it’s hang-out time.  If Biscotti is in the cage, she’ll start biting the bars from the inside and Cookie will bite them from the outside lol (like in the middle photos).  I found that the way to Cookie’s heart when it comes to Biscotti is to surround her with food while ‘Scooti runs around and popcorns.  They both love to eat together~

However, not everything is perfect.  Biscotti is, how you say…a total idiot.  She insists on eating whatever piece of food Cookie is currently eating.  The dork will actually stick her head in Cookie’s mouth, and then wonder why Cookie bites her.  I’ve deflected some of Cookie’s wrath (and by deflected I mean I took the bite full-force on my fingers), but ‘Scooti is just driving me nuts.  Cookie got her once tonight on the head pretty good, but ‘Scooti is gonna have to learn if she’s gonna live with her.

That’s actually totally normal baby behaviour. It’s how they learn what’s safe to eat! :)

Bandit used to do it all the time but stopped after Bubble bit him in the eye (Bubble isn’t partial to being around other piggies to begin with). But the older boys mostly just put up with it until then. It was really sweet how nice they were about it since they’re all such boogers to each other. I figured it was because he’s two years younger than they are, so until he was well over a year old they treated him like a baby. :)

Too bad Cookie doesn’t know it’s normal baby behaviour… :P

57 notes

2:30am August 12, 2014

So when I was a teenager, I went to this recreational day program thing.

It was mostly for developmentally disabled people.  This wasn’t like a sign they posted on the wall or something.  They just said it was for people with disabilities.  But pretty much everyone there had autism, an intellectual disability, or both.  It encompassed a really wide range of abilities, too.   Anyway, I felt like I fit in pretty well, all things considered.

I had this shrink… he was the same shrink who later tried to tell me that I wasn’t actually an adult.  If you want to read about that entire mess, read my post On (Not) Having A Guardian.  

But anyway, there was one day that we were making some sort of holiday food.  It was one of those things where you use icing as glue to sculpt gingerbread house type things together.  I don’t remember the details.  I do remember that one guy there kept eating the icing to the point he eventually threw up.

And anyway, I told my shrink about it, and his response was, “You deserve better than having to be around people who eat sugar until they spit up.”  Or something along those lines.  He was always saying things like that to me, and I was always very angry with him for it.  But I could never put into words why he made me so angry when he said things like that.

This was a group of people I’d gotten to know pretty well.  We didn’t just sit in that room and color and play games.  We also went out to the mall together, endured being stared at together, and did a lot of things together in public.  And he was basically saying, “You’re too good for them.”

I didn’t feel too good for them.  I didn’t feel different from them.  I didn’t feel like there was a “them” that I wasn’t part of.  I have never felt that in groups of DD people.  But there have always been people who have assumed that I can, and should, feel separate from other DD people.  Possibly because I’m exgifted (but somehow I doubt it, it’s not like gifted status or lack thereof is incompatible with DD).  Possibly for other reasons.  

Whatever it is, I find it insulting.  I find it insulting to me as a person, and as a DD person.  I find it insulting to other DD people and especially ID people.  And the way he was always reducing it to “people who drool” (guess what, I drool too, you asshole), or “people who spit up their food” or other things like that, as if that was an entire type of person that I was too good to hang around with.

It wasn’t just in DD settings that he said this stuff, too.  He was just as likely to make these remarks about people in the psychiatric system.  It was like he was always trying to keep me from making connections with other people.  Always trying to make me see myself as magically separated from whatever kind of people I was spending time with.  So that I wouldn’t want to spend time with them.

He was always saying stuff to the effect that I was too good for something, though.  I remember showing him a picture of myself in a rocking chair that they’d bought me at a group home so that I could rock in a “socially acceptable” manner.  And he totally missed the point of the whole explanation of the origin of the chair.  And he started going on and on about the picture itself.  And how “There were all these people who saw that as the best possible outcome for you, to be out rocking in the yard of a group home, and I knew you could be more than that.”  As if sitting in a rocking chair meant something more than just sitting in a rocking chair??

He was the one, by the way, who had made the prediction that in a best-case scenario, by my early twenties I’d be living totally independently in the Santa Cruz mountains with a bunch of cats, writing books for a living.  He never understood why I was so hostile to that projection of my future.  He never understood why I didn’t think that future was even possible, let alone likely or desirable.  And it was his idea of what was desirable for me.  It was his idea that I could, and should, just become the town eccentric somewhere and somehow stop losing skills and stop being who I was, and become someone totally different, someone he could handle.

I still get angry with him when I think about the way he manipulated me, the way he treated me as if I was better than other crazy people, better than other DD people, somehow above all that despite the fact that there was nothing at all separating me from the “people who drool” and all that.  And he also constantly equated physical side-effects of medications with craziness.  I remember once he talked about how he “found me in a psych ward clutching my jaw and screaming” as if this was evidence of how far I’d sunk in life, that I was so crazy I would clutch my jaw and scream.  Except I knew, and he knew, that I was having a bad reaction to Haldol, and that the first part of the reaction was for my jaw to clench shut so tightly that my teeth ground each other to bits.  So like other patients in the same unit, I’d stick my fingers in between my teeth and scream.  It was excruciatingly painful.

So he’d take an excruciatingly painful medication side-effect and turn it into “Look how crazy you were, haha.”  This is why I found it so hard not to hate him sometimes.  And there’s some connection there.  There’s a connection between “Look how crazy you were, you were clutching your jaw and screaming” and “You don’t belong with people who drool”.  Because to him, clutching your jaw and screaming, and drooling, were both evidence of being a type of person, either a crazy person or an intellectually disabled person depending on how he used it that day.

I can’t explain why I loathe this so much.

And by this I mean his entire outlook on the world.

His feeling that he had the authority to tell me what kind of person I was, and what kind of person I ought to hang out with.

His feeling that he had the authority to determine anything about my life at all – remember, this is the same guy who told me that by virtue of being in the system I was not an adult, would never become an adult, and would have to do whatever he said for the rest of my life, because I was not an adult.  And then set impossible goals for me to “prove my maturity” – like overcoming a circadian rhythm sleep disorder.  (He insisted that my irregular sleep-wake pattern was a sign of immaturity and that real adults can control their circadian rhythms on cue.)  More on that in the post I linked to above.

But what on earth gave him the right to tell me what kind of people I should hang out with?  Or rather, what gave him the feeling that he had that right?  What gave him the feeling that he knew, where other people didn’t know, what sort of people were “good enough” for me, and what ones weren’t?  What made him think that I was better?  Even though he knew I rocked, he knew I drooled, he knew I threw up more than that one guy ever had.

It just pisses me off that he ever thought he could make these declarations about who I was and who other people were.  It still pisses me off when I hear people saying things like this – whether about me, or about other people.  Because I hear it a lot.  I hear people in the DD system being compared to each other.  And it’s used as a tool of control.  It’s used to make one person feel special, or another person feel bad, or both.  It disgusts me.  I wish I could make it go away.

All I can say is: this is ableism. Holy crap is it ableism.  But I can’t explain the whys and wherefores.  I can only say it’s wrong, it’s manipulative, it’s hurtful, and nobody should do this to anyone else for any reason whatsoever.  Why do people do this?  Why do therapists do this?  This was a particular therapist who was very prone to doing this.  I can’t believe I once thought him “one of the better ones”.

53 notes

2:55pm July 27, 2014

So my favorite overall flavor of gum…

…has to be Cinnamon Roll (in Wrigley’s Dessert Delights series), followed closely by Lemon Bar (in the same series).  Combining them is also really good.  Problem is that that series has texture problems (it often comes out rubbery and hard to chew), and rapidly loses its flavor.  But I love the way both of those flavors have an element of bread to them, unlike just about any other gum flavor anywhere.  Anne bought me those ones and they’re wonderful despite the texture issues.  And even when it loses its flavor, it usually retains just enough of a faint “bread” flavor to make it worthwhile to keep chewing it, as long as my jaw doesn’t get too sore.

But my favorite regular sorts of gum is cinnamon combined with mint.  (But I don’t like the Orbit “Cinnamint” flavor.  I mean, I’ll chew it, but it’s not something I would deliberately buy.  Especially with the texture Orbit has.)  

Usually for the cinnamon/mint I use some combination of Trident (both mint and cinnamon), Five (mint), and sometimes Dentyne (cinnamon usually, sometimes also mint).  I like the light but chewy texture of Dentyne and Trident (and the flavors are good), and the flavor of Five RPM especially, plus adding Five lets me regulate the level of chewiness better.

In other words I’m getting gum down to an art form.

8 notes