David, my father-in-law, is dying

Yesterday (Friday) evening he collapsed and though they got his heart started again, he was without oxygen for about 20 minutes and based on that and other indications the ICU doctor has predicted massive brain damage. We do not expect him to come back from this and have summoned the extended family to say their goodbyes.

Given David’s age (78 I think) and state of health, this wasn’t unexpected. But it really sucks. We’re all very sad. He was a very good man. I had known him for 22 years.

Every Friday my in-laws have lunch with my husband. I don’t usually join them but yesterday I did and we had a very pleasant meal and got on very well. We talked about books and politics and fixing the roof and the upcoming trip to Wisconsin. Ten hours later we were talking about end of life decisions for David.

I’m really glad I went to lunch with them yesterday.

I will miss him very much.

[EDITED TO ADD]: Everyone who could come arrived so we pulled the plug. He officially passed at 12:53 p.m. today.

Tired. Trying to get stuff done.

Though the hospital helped a great deal I feel like I’m still trying to recover from having two episodes of cyclic vomiting in under a month. I’ve been very tired and haven’t gotten much done.

This past weekend I remember I had to wash my hair and comb it out afterwards. When your hair is long enough to get down past your hips and is in a post-wash tangle, it takes a few minutes to comb out, and you can’t sit down cause it piles in your lap. I had only been standing for twenty minutes or less — long enough to undress, shower, dry off, re-dress and begin combing out my wet hair — but I remember being desperately tired and wanting so much to lie down and take a nap. So tired I wanted to burst into tears. Just from standing for twenty minutes.

I saw my nurse practitioner today. Chief complaint: fatigue. She thinks it’s mainly cause I’ve been on and off my psych meds and they’re interfering with my sleep. It’s hard to fall asleep at all — I find myself drowsing for hours and nodding but not quite going under — and when I do fall asleep it’s hard to sleep for longer than two to four hours at a time. And four hours, plus four hours, does not really add up to eight hours when it comes to your body. It may add up to eight hours in numbers but not in sleep.

I feel like a lazy useless person. I’m just trying to explain why the updates I anticipated making have not been made yet. But I will update today if only a little.

I have to get this CVS (cyclic vomiting syndrome) under control. It’s ruining my life.

Feeling much better now

Woke up yesterday morning feeling even worse than I had the day before and the day before that. I wound up going to the hospital even though I had said I don’t like doing this when this episodes happen. No one wants to become a frequent flyer especially as I know I’m not dying, just rather feeling as if I am.

Anyway it actually went very well and they did exactly as I asked and got me on the IV drip that actually works and now I feel human again. Even managed to salvage some Valentine’s Day with my husband.

I will be updating today and much has happened.

Got the pukes again. Second time in under a month.

So much news has happened in the missing persons world and I hope I’ll be well enough to update tomorrow but I am down and out at the moment.

Pretty much all I can really do is read, watch TV, groan, drink water, and run to the toilet to throw up everything I just drank. Lying absolutely still, or sleeping, is best. If I can drink some water and then force myself to fall asleep for a few hours, for long enough to absorb that water, that’s the best thing. But any kind of movement starts the nausea off and sometimes I’m struggling not to vomit cause I know I am dehydrated and am trying not to lose any more, and sometimes I am actively trying to throw up, just to ease the nausea, even if there’s nothing left.

A person is utterly incapacitated. Of course people say “go to the hospital” where I could get put on a drip and be more comfortable but in the meantime I’m lying there in ER for hours catching all sorts of diseases while they test me for a bunch of things I know I don’t have. To say nothing of the cost.

I just woke up feeling thirsty and as I typed this into my phone I drank ten ounces of water. I know cause my water bottle has the measurements on the side. I would love to just suck the entire bottle down but as it is I have likely already had too much and it will go into the toilet later.

We will see how things stand tomorrow. Nothing to do but wait.

The dog is worried about me

Sorry, spent the last few days lying in bed groaning

I’ve had another cyclic vomiting episode again. I actually hadn’t had it happen since November but it showed up again.

Arguably this one wasn’t as bad as it usually is. I only threw up ten times. Most times it’s a lot more. It’s just the nausea is agony. It’s constant, overriding everything else. My whole body becomes a stomach.

The docs have got me on a different medication for it. On this medicine I didn’t have a vomiting cycle from November until late January when before it was happening every month or so. So I’d call it an improvement but wonder if the cycle is going to return in another month as it did before.

I’m feeling a little better today. I ate for the first time since last week. I’m still pretty weak and am going to take it easy today but I am hoping to get an update in if I am up to it. My apologies.

Too hot for Reddit. A fugitive from multiple platforms now. The other side of my online life: an unfortunate victim of mathematics and automated content moderation and also my own choices.

False reporting, AI moderation and the law of averages have struck again. I’m not being persecuted, I’m just mathematically guaranteed to wind up getting banned from more social media platforms than a certain politician in February 2021.

I have made myself intimately familiar with Reddit TOS because over the past couple of years since I began posting medical case reports and photos. I developed a following of over 2700 people and became the queen of a 300,000 member medical subreddit. I started out just posting the occasional interesting medical case I found, and discovered people liked it so I began posting it on a daily basis. I created a list on my phone of links to medical journal articles and selected some each day to post.

Looking for new stuff to post, reading it and discussing it with others was a really fun hobby. I learned a lot about medicine from the reports and the discussion they inspired. I used the opportunity to educate against ineffective and harmful quack medicine (two words: “bonesetter’s gangrene”). Multiple Redditors told me they were medical students and used my case reports as a study aid. In one case a woman recognized her own undiagnosed disorder in a case report I put up and said she was delighted cause this medical problem had been bothering her for years and now she finally knew what it was and how to fix it.

And now it’s probably over, at least over as it was, and I’m not surprised.

As far as I am aware, although it was extremely graphic at times, none of my content violated Reddit TOS. The medical subreddit I posted to also had its own rules for what could be posted, rules I followed to the best of my ability. All of it was presented in an educational context, the genital area was covered if the patient was a minor (even in the cases of autopsies and fetuses) and the general atmosphere of that subreddit is very respectful.

But my content had a tendency to get reported a lot, something I know cause I was able to monitor reports as I was a sub moderator. Some people just like reporting things to cause trouble. Some people were truly shocked by the content: the content in that subreddit, due to what I am assuming to be a Reddit glitch, apparently isn’t blurred by default like all the other NSFW subreddits and so many people who prefer to keep NSFW images blurred saw more than what they wanted. I could do nothing about this but, in my capacity as sub moderator, clear the reports from the inbox since I believed my content didn’t violate TOS and the other moderators were fine with it too.

So my stuff accumulated reports a lot and some posts were especially famous for them. Which brings me to the law of averages:

For each report a decision must be made whether to remove the content and give the poster a violation. And each time there’s a slight chance (let’s pretend it’s 1 in 100) that the decision will be wrong. That a post that didn’t violate Reddit TOS will get removed, or a post that does violate it will stay up. No one is perfect. I’ve made incorrect moderation decisions before and so has Reddit.

And so when you’re posting content every day and half of it generates at least one report and some posts generate dozens of reports, this guarantees, mathematically, that eventually you will accumulate sufficient violations to get permanently banned. The risk increases exponentially because any post you add can get reported and removed even if it’s been up for years. I got a violation once on photos that had been up for two years.

To Reddit AI (artificial intelligence) moderation the injuries on the child in the photo looked like images depicting child abuse, which is disallowed under certain circumstances. In fact the child in question had been attacked by a wild animal, specifically a jackal. I’d made many previous posts about attacks from dogs and bears and big cats but never before by a jackal until that day and it got me permabanned.

Reddit AI only saw the photo and not the medical journal article I attached to the post explaining about the reconstruction done on the child’s face after the jackal attack. A lack of context is the cause of a lot of moderation errors. The truth is, even if the child in my photo had been injured from child abuse, the medical context (how to do reconstruction for this kind of injury in a resource poor area with a very young patient) would have made the photo permissible under Reddit TOS.

But under AI moderation nuance seems to be impossible.

It’s happened to me on two platforms right now. Last time was Facebook and the posts weren’t medicine related, they were Holocaust related mostly. Facebook AI moderation can’t tell the difference between content meant to educate about the Holocaust and World War II (which is ok under TOS) and white supremacist promoting content (which is against Facebook TOS) because the same imagery (such as the swastika, a gentleman with a certain type of mustache, etc) used in both. The last straw was a SpongeBob meme. I did manage to get a Facebook account back but it took awhile and I lost all my old content.

Sucks but that’s what things are like for people who make posts like mine at the rate I do in this Wild West era of social media platforms and artificial intelligence. I have to kind of accept that this will happen.

I use Reddit for medical education and Facebook for Holocaust education and got banned for doing this. I don’t know what topic to educate people on next. What platform to get banned from.

If I can’t figure out how to get back on Reddit (and I appealed the permaban and I have some plans but it will take some time to see how this spirals out and I am assuming it’s gone) I might make a second WordPress blog referencing my Reddit username and post my medical journal stuff and photos there. Or I might find another social media platform to land on.

Fortunately I do not need a Reddit account to access content. Only to participate in discussion and post my own material. I do need a Facebook account to access material so I need that for the Charley Project.

So apparently I’m not getting any better

In my most recent therapy session, my therapist said she wanted to refer me to some program the clinic offers that would offer more support. I can only think this is cause I’ve seen seeing her since spring and remain very depressed.

She was a bit vague about what this program involves, but I said go ahead and refer me. So now I wait on that.

I saw a specialist about my stomach problem. He wants to see what my current medications do—since they were recently changed—and if they are not helping he has a plan as to what to do next. I felt like he was taking the problem seriously anyway.

I don’t really like writing about this stuff on here because it seems like the story never changes, but I know people have asked. If all goes as usual I should be sick later this month between Christmas and New Year. What fun.

I know I’m being a lazy slacker and not updating like I should. It’s just kind of hard to move right now. Hard to think. Last weekend I was lying in bed groaning, not from pain but from anxiety. Over something that I know I shouldn’t have been all that anxious about and couldn’t change in any case, but I was completely swamped by it.

I hope I don’t have a meltdown like that during Christmas. It would be terribly embarrassing.

Depression not much improved but one must go on. Also: a postwar disappearance.

So I’m somewhat less exhausted but my depression isn’t really any better.

Of course the geopolitical reality right now is not helping. We’ve got major conflicts now in two parts of Eurasia and there’s fascists involved and Jews too and the guy in charge of Russia has dreams of a Soviet reunion tour and let’s just stay it’s starting to look a bit like World War III is on the horizon. While we’re slowly drowning in oceans we ourselves put on the boil.

Under such circumstances it is difficult to keep one’s chin up.

I had a horrific panic attack about it. I had just read this editorial called something like “Sleepwalking to Apocalypse” about how climate change might turn into an extinction level event for humans. I started thinking about all the history I’d read, the long-dead people I’ve never met who seem very alive to me because I’ve read about them. Like, there was a really awful copper merchant in ancient Mesopotamia with a house full of complaints from angry customers he’d cheated. In 13th-century Novgorod there lived a little boy named Onfim who was learning to read and write. They were people of no importance at all and they died long ago but they are alive in human historical knowledge today. And I started thinking: what if that doesn’t happen to me? What if hundreds of years from now there won’t be historians and archaeologists writing books about people like me for others to read, because there is no one left to read them or write them? I’m an atheist and history is the only immortality I know. I wound up sobbing and hyperventilating and just generally freaking out, at the prospect of complete oblivion.

Yesterday I read Holocaust book #800, which had been on my online to-read list for twelve years. Basically for as long as I’ve had an online to-read list. One of the guys in the book survived the Holocaust only to disappear in the months after the war.

In those 800 books this is the third time I’ve encountered a named person who did that. Four if you count Raoul Wallenberg. A lot of people went missing in all the displacement, everyone being on the move. It was easy for identification papers to get lost and from my understanding to get new ones was easy: produce witnesses who had IDs and would swear under penalty of perjury that they knew you before the war and you were so-and-so.

In the case of missing man in Holocaust book #800, his name was Lustig and he was in charge of the Berlin Jewish Hospital which by some turn of fortune managed to outlast the Nazi Era. A Soviet car pulled up outside, and they said he had to come with them. He did. He never came back. No one ever saw him again. Everyone the author of the book interviewed said they’d heard Lustig had been taken to Sachsenhausen, a former Nazi concentration camp now being used to warehouse Soviet prisoners, but the author checked and Sachsenhausen has no record of him.

The most likely explanation is that Lustig, like Wallenberg, got swallowed up in the black maw that was the gulag archipelago. (That is, sent to Siberia and died there.) But the book suggests the “arrest” might have been staged and was either a kidnapping and murder by Lustig’s enemies (he had a lot of them) or Lustig faking his own death because he was probably going to wind up facing charges of being a Nazi collaborator.

You see, in capacity as head of the Berlin Jewish Hospital Lustig had obeyed a Nazi order to select half his staff for deportation to Auschwitz. He’d shut himself up in his office with his secretary and his two assistants and they stayed up all night arguing and in the morning they had a list of names of people. You can see why the postwar authorities might have had some pointed questions about this and why he might have wanted to make a discreet exit or why some people might have wanted him dead.

Bizarrely, Lustig’s wife filed a false compensation claim with the German government claiming her husband had died in the Holocaust in 1943 when she knew perfectly well he was alive until at least 1945. Maybe he was just dead to her: he’d been womanizing all over the hospital during the war and sexually harassing the nursing students. I don’t think there was much love left in the marriage by the time he vanished from the historical record.

Speaking of the historical record, I could not add him to the Charley Project even if he were American because the author of the book could not find a photograph of him despite searching high and low and no one seems to recall what he looked like really. He was a shadowy flickering figure long before he went missing.

So really, no one can say what happened to Lustig. He was born in 1891 so he’s definitely dead now. I probably have made him sound like a monster, and he was an unpleasant man by most accounts. But the fact is he kept the hospital functioning until the very end and it was the very last Jewish community institution still running in Nazi Berlin except the cemetery and it saved hundreds of lives, and all that could not have been an easy thing to do. Maybe you had to be a bit of a bastard to do it.

What do you guys think happened to Lustig?

I hate getting sick like I have been lately

So I’m finally feeling better and yesterday I got a small update in and started to get my energy back and eat a proper meal. At first I could only eat a few bites at a time.

And I was so tired. The nausea went away but now I had to do things like the dirty dishes and I had to sit on a kitchen chair turned backwards to do it and then had to sit in bed for a bit after. It went like that.

But I feel much better now. Got an update in, will put in another one.

I don’t know why this happens. It’s like I was normal as a kid, as far as I know, in terms of how often I got nausea and vomiting like this for any reason at all. Then as a young adult I started getting a bit of what I thought was a delicate stomach, and it got increasingly delicate, and now here I am with a CVS diagnosis on six weeks a cycle. I’ve been blogging since like 2008 when I was 23 and I’m 38 now and you can actually see it happening there, if you look back.

I am seeing a nurse practitioner about it. What we are trying doesn’t seem to be working so far.

Was sick again, same old CVS

On Monday I started puking and was more or less incapacitated for a few days. The constant battle between nausea and thirst.

This morning I woke up feeling so thirsty I felt like I was going to die. I drank half a bottle of water, then the other half, and lay there panting still feeling horribly thirsty, until about an hour later when it all came back up.

But! I’m getting better. This afternoon I tried a handful of dry cheerios, a few at a time, and kept them down. At dinner I was actually a little hungry. My husband made barbecue sesame chicken with noodles. I ate a little bit, like three chicken pieces and a two or three forkfuls of noodles. And I’m not nauseated and feel like eating more.

I’ll try to get back into work tomorrow though I may be too tired. These episodes are very fatiguing.