complaining about medical stuff

[rushthatspeaks]

The iron infusions are, I think, working, but are taking up the entirety of my physical, mental, and emotional resources in ways I really wish they weren't. This despite them being at a very good medical facility run by people I genuinely trust and in most cases like.

There are good reasons for all of the ways in which things are terrible, but I wish I could manage to change literally any of said reasons.

For instance: as I mentioned earlier, my blood volume is so low that it is very difficult to get a needle into my vein right now. The nurse who is best at it can manage it in only one location, which happens to be the back of my dominant hand. When I have needles in my inner elbow, it's not like they're comfortable, but awareness of them can sometimes fade for a while, especially if there's something else going on. A hand needle has a moment of blinding pain going in and then is continually obtrusive until it comes out again, with occasional flashes of nauseatingly intrusive wrongness. Forty-five minutes or so of one is a significant endurance test. The nurse is trying to prevent scarring, which I appreciate, so she puts the needle in a slightly different spot every time, and as a result I have about eight overlapping distinct layers of bruise. My skin has also decided to protest the idea of medical adhesive via dryness and cracking, despite copious hand cream. Also, it is my dominant hand, and it is strapped to a whole lot of IV this-and-that while the needle is in, and should not be jarred or moved. I can hold a book and turn its pages entirely with my other hand, but I cannot clean my glasses, pick up anything I drop, do anything at all involving my phone, or open or otherwise interact with my bag. There is nothing that can be done about any of this.

In addition: there is precisely one place in your average medical facility that is set up to give people infusions of things into their bloodstreams in a slow and controlled fashion, and it is the chemotherapy suite.

Therefore: the nurses are legitimately friendly, outgoing, caring and social (they have to be); the entire place is tastefully and cheerfully decorated, and I mean genuinely tasteful, not institutional tasteful; they offer you snacks and beverages and would probably turn my book pages if I needed it; everyone operates with a calm firm brisk optimism which has behind it only the faintest whisper of we are cheerful here because the alternative is unthinkable. I feel exactly as I felt when Fox was in the NICU with an ailment which everyone knew at all times that he would survive.

Every interaction I have had with another patient has been horrifically awkward all around, because they assume I am also there for cancer, and I am not, and there is nowhere to go conversationally once this has been established. Nothing has yet again attained the heights of the conversation I had on my first visit, in which my interlocutor assumed that I had dyed my hair its present color because it was going to fall out anyway. No. I don't have a traditional office job, and this is just my hair, and I understand that (currently) bright magenta hair to the tailbone is a reasonable thing to comment on about a person, but once she had ascertained that I am not going to lose it she had something of a miniature breakdown, and neither she nor I knew how to cope with it in any fashion. I live in legitimate dread of something like this happening again. It is right up there on my list of worst social minutes of my life. I have had break-ups that were less painful. For everyone.

So my natural inclination is to want to park my book firmly about four inches from my nose and emerge from behind it as little as humanly possible. But, and I remember this from the NICU too, the nurses want to talk with me, because I am going to be fine and it's nice for them to interact with somebody they don't have to worry about. It is safe for them to get attached. And, as I said, they're genuinely nice people-- they're lovely! I expect to see one of them again at Arisia! It's just that even in circumstances in which no one is doing anything medically to me at all I find forty-five minutes of small talk a difficult haul; at conventions we are at least all there to convention and there are conversational topics floating in the air if necessary. When I have a needle stuck in my hand and am feeling somewhere between sharply in pain and nauseated, I do not want to spend forty-five minutes talking about our kids and the weather, and there is no polite way to get out of this situation. I mean, I know that if I asked them to leave me alone, they would. I know that! But I don't think they get patients who are definitely going to be fine all that frequently-- I asked how often they do iron infusions and it's really not one of their main things-- and I would actually feel kind of bad. I mean I am the person in the suite who doesn't work there who doesn't have to make a continuous effort at not bursting into tears. So small talk. Which drains my social capacities for the entire day and is honestly overextending.

Also, because I have delayed sleep phase disorder, I get up to go to these appointments between three and four hours earlier than I am traditionally awake, and because sleep disorder, I do not manage to get to sleep earlier beforehand, and there is nothing to be done about this either. They fit in my appointment slots when they have the space, and generally I am in the last slot of the day; by the time I'm usually up the suite is already closed.

Honestly, making myself go to these at this point feels as though I am doing the mental equivalent of wrapping a cat in a towel and forcing a pill down its throat, except that I am also the cat and I have the verbal capacity to explain to myself how upset I am. I offer myself increasingly ridiculous bribes to get out of the house, and then to get out of the car and go into the hospital. At this point, I am at buying myself a Nintendo Switch and about five games when I know I am finished with infusions for good, and I have located a new-to-me gourmet bakery which I drive directly to afterwards and apply chocolate. It doesn't actually help. I am using previously-unknown-to-me entire reservoirs of executive function, and I have absolutely none left for anything else in my life. I have the mental and emotional bandwidth of a pickled herring. I have literally canceled or put off everything else that I do, except going to my therapist, and I spend vast quantities of time in bed pondering how much worse this would be if it were actually chemotherapy, and then I feel like a wimp.

I made it to Fox's preschool's curriculum meeting tonight, even though there was an infusion this morning, because it was an important meeting that was happening when it was happening, and it was a really bad idea in that I will not be getting out of bed tomorrow at all. And then Friday I get to wrap myself in a towel burrito again and proceed firmly despite all the hissing.

I am, slightly, infinitesimally, tentatively, vaguely starting to feel a little better, in terms of stamina and dropping overall pain levels.

In conclusion, everything is terrible. Send distractions.

Comments

[green_knight]

Ugh. I am sorry this is hitting you so hard in a way that nothing can be done about - every part of the puzzle sounds perfectly reasonable, but together they add up to something that's very draining.

I'm not doing Inktober this year, but you might enjoy leecetheartist's AInktober, in which she takes a list of prompts generated by an AI and draws them. With worldbuilding.

[anne]

I have a spare Kindle if it would be at all useful to you.

[mrissa]

I have made myself a distraction note for when I get home.

This does indeed sound terrible.

I also feel like this is why we don't play misery poker. Because you do not have to have the worst situation of anyone in the room there at the infusion clinic. It is okay to note that your situation is miserable without it being the most miserable. And I'm really sorry it's miserable.

[watersword]

Oh gosh, this all sounds so awful, and I am so sorry! I always find zooborns.com a nice thing to put in front of my eyes when I'm miserable, because of the combination of cute baby animals and people working really hard and succeeding at conservation work.

[lydy]

That sounds genuinely horrible, but I confess to being amused at the image of wrapping oneself in a towel and hissing at oneself. I hope the Nintendo Switch brings joy. I covet one, but only for the Pokemon Go aspect.

Wishing you and yours all the best.

[yhlee]

*support support*

[kore]

Oh god, that all sounds so horrible (and trying to make performative nice small talk in that situation would break me). I'm so sorry.

Distractions: The Museum of English Rural Life is pretty amazing! https://twitter.com/themerl?lang=en

[moon_custafer]

That sounds awful in all kinds of ways.

In moderately interesting news, TIL of the existence of Shoji Tabuchi, a Japanese violinist who decided as a young man in the mid-1960s that he wanted to be a Grand Ol Opry country/bluegrass fiddler. So he went to America and became one, touring and opening for a lot of famous country acts. Since the early ‘90s, he’s run his own glitzy, corny, Nashville-style revue, with his American wife and stepdaughter, in a theatre in Branson, Missouri, for busloads of mostly white, mostly senior fans. It’s his dream and he’s living it.

[amaebi]

That is weirdly soothing.

[jesse_the_k]

+1 on the misery poker -- you have every reason and right to feel miserable. Feeling shitty about feeling miserable won't help.

Many people seem to find Untitled Goose Game amusing.

[ckd]

Thinking of you. *support support*

[larryhammer]

Emily Wilson, translator of the Odyssey, writes Homeric limericks.

[ursula]

This sounds universally awful. I'm sorry.

I do really like your cat metaphor.

[vr_trakowski]

This is totally unsolicited, I know, so please ignore it if you like. But you are there for your health, and you don't have an obligation to chat with the nurses. It's great if you feel like it, but that's not why you're there. In fact, it's impeding your recovery.

You can tell them you just don't have the spoons to talk. You need to concentrate on getting better.

If you're into audiobooks, The Guernsey Literary and Potato Peel Pie Society is very well done, gently amusing (though harrowing at one or two points) and relatively short for an audiobook.

[nineweaving]

Seriously. The nurses are there to help you; you are not there to support the nurses. Tell them you appreciate their kindness, but you need silence and space.

Love,

Nine

[vr_trakowski]

Oh! I had a thought - the last time I had surgery, they couldn't get a line in my top half so they put the IV in my foot, in the big vein running across the top. Once they got it in, it was surprisingly comfortable; I could hardly feel it even when I walked.

Perhaps they could try it for you?

[gwynnega]

That sounds dreadful. I hope you feel a lot better soon.

[niqaeli]

Honestly, making myself go to these at this point feels as though I am doing the mental equivalent of wrapping a cat in a towel and forcing a pill down its throat, except that I am also the cat and I have the verbal capacity to explain to myself how upset I am.

This is a terribly vivid metaphor, and communicates very clearly to anyone who has ever done the towel burrito to medicate a cat how utterly exhausting the whole thing is.

Distractions: I don't have the will to fish cute cat photos out of my phone to share right now, so instead here is one of the instructors at my studio being utterly amazing on trapeze with a gorgeous back flag split.

[thistleingrey]

I am sorry that I don't have distractions to offer, but I am glad that the infusions help despite the many ways in which things related to them are difficult. (I've done the "You must be here for something terminal" thing, briefly. It is not great, yeah.)

[boxofdelights]

Maybe everyone but me already knew about Ezra Furman? But I am just loving this: https://www.youtube.com/watch?v=NDOenFQazrA

[nextian]

For distraction purposes, have you read Restoring Ross's Cross House blog? He's been restoring this massive mansion in Kansas from its rotting condition for five years, and it's still got a long way to go because he insists on doing everything (a) more or less himself (b) in a way that will let it last for another fifty years. I was fascinated by the blog when he was talking about the exterior, but I fell in love when he started decorating the parlor and I realized he had an unbelievably camp sense of decor.

Blood on the Bosphorus is-- so do you know what the Paradox games are? they're a series of excessively detailed history simulators. There's a tradition of actual plays on the Something Awful forums where people play as a particular faction throughout history, which usually means going through a few different games (and modding them as they go), and then tell a narrative about them. Rincewitch took this to a whole new level by telling her alternate Byzantine history from the point of view of in-universe historical documents of different kinds. Things got wild fast, and the ultimate result is one of the most interesting alternate histories I've ever read. What's great for your purposes is that it is. Extremely Long. So so so long. Will probably help to have a Something Awful account (they're $5 lifetime or something like that) so you can skip past the ads.

Both are internet only so not the most helpful in terms of During The Infusion Times. Hope this helps for the other times, though.

[landingtree]

I don't have any longer distractions to offer than a kitten picture, but here is one of those:

[asakiyume]

larryhammer blogged this, so if you follow him, you may have seen it, but these lightning strikes in slo-mo (and stormclouds in fast mo), with very dramatic music, impressed me (video is approximately 3 minutes).

[cyphomandra]

I hope something (even a small something) improves for you soon.

I have the opposite of your problem in hemochromatosis, which is a disorder in which I store too much iron to the extent that it will eventually build up in various organs and damage them; it can, however, be effectively treated by being regularly bled, which makes me feel suitably sanguine. At the moment I go to a standard outpatient clinic every 1-3 months, but when I was diagnosed I needed to have 500mL taken off every week for three months - and in order to accommodate that they put me in the chemotherapy suite. So I sympathise, because I used to go in feeling ridiculously healthy (I was training for a half marathon at the time) and sit there surrounded by people who were very much not so. I would refuse the offered tea and biscuits out of guilt, and just sip water.

(my guilt was not improved by the fact that as I’ve been in the UK in the mad cow window period my blood is not eligible to be donated, so it just goes to the incinerator)

[boxofdelights]

Bat ballerina!

https://www.yves.brette.biz/public/gif_et_autres_arts/danseuse_etoile_chauve_souris.gif

[lokifan]

OMG, this sounds HORRIFIC. You poor thing. I'm very impressed though.

[amaebi]

OMG this sounds so hard in so many directions. Reading back over comments to find out about what might constitute distractions.

[amaebi]

IIRC you have issues with Parks and Rec over the Jerry thing. Might you find Black Panther soothing? I do, fairly intensely. I wouldn't have realized that would help me, but Chun Woo intuited it and taught me.

[amaebi]

Superman wheelchair costume.

[amaebi]

Thinking of you, and holding my thumbs.

[ashnistrike]

I'm just catching up on everything after a couple of weeks of very boring health problems (kids back in school picking up plagues, collect the whole set). This all sounds awful, and I'm sorry you're dealing with it. I hope it gets to the point soon where you can at least reduce the stress level of treatment.

I found this novel-length Good Omens fic delightfully distracting while in the throes of bronchitis: https://archiveofourown.org/works/20177950/chapters/47807593

(TW for several things listed in tags--it's about Crowley getting trauma therapy--but it's also funny and heartwarming.)

Is there anything we could do or send that would be helpful (books, chocolate, medical foo translation, etc.)?