On the post where I mentioned an old blog post on a deathling blog. I think I attributed it to Caitlin Doughty because it was her twitter I found it on. It turns out not to be her after all. Someone posted a full correction to all the things I got wrong about who wrote it, who actually died, and so on. I feel really bad about this on many levels. One, that I got it wrong in the first place. And two, that all I can do even now is post this I can’t go back and correct it. I can’t respond to the correction directly — but thank you for telling me! I just lack the spoons right now cognitively and physically. And this sort of mistake is part of the combination of being cognitively disabled and pushed to nearly my breaking point lately. I know everyone makes mistakes. But mistakes happen for different reasons and that is the reason for my mistake here. And this kind of mistake will keep happening because there’s not a lot I can do to prevent it. It has nothing to do with being careful, or how much I care, or anything about motivation. It never has had anything to do with that and it’s not going to start having to do with it now. I’m just going to mess up in certain areas, over and over again. So I’m posting a correction. But know that i can’t always post my correction, I can’t always screen comments, I can’t always post comments, and I certainly can’t avoid this particular kind of mistake. So these things are going to happen and I’m not even always going to be able to do this much, so I wanted you to know it’s not because I don’t care. Hell, I can’t even do categories or tags on this post. All I can do is this. What I’ve done, what I’m doing, right now. This is the most I can do.
So I’ve been struggling to keep my potassium at normal levels even with supplements. I’m losing fluid continuously out a hole that has to wait a long time to close naturally. Combined with the fact I had cellulitis and ended up on antibiotics (yeah this surgery has sucked donkey balls with the complications, it was a simple surgery that went awry in a million ways) which did… things… to my digestion, I’d been losing so many fluids I went alkaline and all my electrolytes ended up askew because of that. Even after the antibiotics stopped, still losing lots of fluids, still going alkaline. (I have other risk factors for that but never actually go alkaline except when losing a lot of fluid.)
So my potassium was going low and staying low. Not as low as it’s been in the past. No stopping breathing, no seizures, no lab results marked “LL” for super-low instead of low, nobody telling me it’s critically low like at my last hospitalization. But low potassium is too low potassium, and even with supplements it wasn’t staying up.
The nutritionst learned I like to go to the cafeteria and grab things like V8 to get some nutrients that aren’t in my tubefeeds. She thought this is great. (She seemed thrilled to have a patient whose main food craving is vegetables. She must not get that a lot.) Anyway she told me that they wanted to see if adding food sources of potassium would help me in addition to the supplements So she gave me a list of high-potassium foods, which happened to mostly be foods I was already getting. She also said I should try kombucha as a probiotic because it’s easier on my guts and on my tube than yogurt. I’d never heard of kombucha but it is easier to digest and it smells good.
And she also gave me this nifty pass that allows me to buy anything in the cafeteria for free as long as I am a patient here!
My free food cafeteria pass!
So I go in there and the highest-potassium food in the cafeteria is coconut water. Which comes in the most ridiculous hippie-oriented packaging. So I’ve been stocking up on coconut water, kombucha, V8, and whatever other random liquids they have that are on her list. But mostly coconut water because it has the highest potassium.
And it works, my potassium is up.
But I feel ridculous someimes with my cafeteria tray filled to bursing with hippie food:
Kombucha, coconut water, and V8. The kombucha and the coconut water feel like I’m eating hippie food.
But my potassium is up and indeed this morning my electrolytes were totally within normal range for the first time since I got here. So the hippie food works!
So I guess I will be eating lot of hippie food for a while. If the hydration and potassium help keep me out of alkalosis, I’ll eat damn near anything.
But the hippie food… wow. My friend wanted to go to the gift shop and get me some kind of stereotypical hippie items to go with my new food preferenes, but she couldn’t find any tie-dyed scarves or anything so she gave up. She has been attempting to tell me that my plan to eventually create a prebiotic and diabetes-friendly vegetarian diet using regular food (i’m high risk for diabetes because steroids and my tubefeed diet is not good for that, and the prebiotics help prevent c diff which I’ve gotten already this year and am high risk for, meamwhile vegetarian because easier to hang in feed bags without worrying about rapid spoilage) proves that I have been a closet hippie all along who believes in natural organic everything and thinks my food choices make me one with the earth and karma and all sorts of ridiculousness. (She gets very elaborate with her teasing but it’s all friendly.)
But in this case the hippie food is working, so I’ll put up with any jokes. I find it kind of funny myself.
SERIOUSLY look at the packaging on that coconut water…
Click for full article by Cal Montgomery on stopping skin shock as torture at the Judge Rotenberg Center, an institution in Massachusetts. Spread this around.
Excerpt below:
2 years after the McCollins trial, the FDA took testimony on the practice of contingent electric shock as a way of controlling disabled people. Advocate after advocate urged them to ban the discredited and abusive practice, pointing to the fact that the United Nations regards the practice as torture. And the FDA seemed to be listening. In 2016, it was reported that the regulations needed to stop JRC from doing this to people had been drafted.
And then … nothing. The Obama administration declined to stop this. The Trump administration has so far refused to stop it as well.
Today disabled advocates and their supporters are continuing to demand that the FDA release the regulations, ban what happened to Andre McCollins, and move toward a world in which people with intellectual and developmental disabilities who need supportive services are able to access services that they themselves find supportive and that promote their ability to live the kinds of lives they want for themselves.
The FDA can be contacted by telephone at 1-888-INFO-FDA (1-888-463-6332).
