Resources-and-reminders - Resources

i’m getting my drains out tomorrow and i’m sure things will be different after they’re gone, so here’s my observations about top surgery recovery as of 6 days post-op!

(click here for my first post, from 3 days after)

something i forgot to mention in my last post is that if they tell you a medication has to be taken with food, do not fuck with that. absolutely do not. my antibiotic had to be taken with food and on day 2, i thought “well, i just had breakfast not too long ago, surely that’s close enough and i’ll be fine” and my parents agreed, but guess what? i spent the next hour in hell. the meds made me nauseous so i had to eat, but eating still hurt a lot because of the sore throat from being intubated, so trying to make it better just caused me more pain. and both the sore throat and the nausea (which i guess was as much a heartburn sort of situation as it was nausea) were both very chest-adjacent feelings, so that on top of the usual pain and discomfort from surgery was just a perfect storm of horrible things all centralized to one part of my body. it was awful, and i will never fuck around with something like that again. that being said, if you do find yourself in that situation or are just looking for something light that will still do the job because you’re not that hungry, 10/10 would recommend oatmeal and apple sauce. apple sauce is what finally got my body to stop rioting against me and my bad decisions, and after that i started always taking it halfway through a bowl of oatmeal and that worked perfectly.

on day 4, i was able to sit up and get out of bed by myself for the first time! i still can’t do it just by using my core muscles, but if i hold onto my legs and lower them, i can sort of roll myself up into a sitting position without using any of the affected muscles too much.

on day 5, the sore throat from hell that being intubated gave me finally went away! cheers to not gripping my pillow in pain every two seconds while i swallow my spit anymore. it lasted a while, but it honestly went away pretty fast — on day 4 it was a bit better than it had been, and then the next day it was just gone.

also on day 5, i really started to feel the bandages digging into my armpits. i’m not sure if it’s because the bandage has been slipping up over time, if my armpits have some extra swelling now, or if it’s just been wearing my body down over time, but it feels like it’s starting to cut off circulation at a certain point and it makes my arms ache sometimes. that’s probably not great, but the surgeon will be redoing everything at my post-op anyway so i’ve just been riding it out until then. in the meantime, i can tell it’s definitely worse when i’m sitting back and kind of slouched (because that position pushes it up more), so i try to sit up or walk around when i feel it. having pillows on either side of me to put my elbows up on definitely also helps a lot — that’s how i’ve been sleeping, but it would be good for just sitting too.

also also on day 5, i started getting this weird fluttery feeling in the spot where the left side of my chest and the meat of my left armpit connect. it feels like it’s probably some sort of muscle spasm. it’s not painful at all, but i honestly wish it was because it’s just super weird and uncomfortable instead and i hate it. it genuinely might be my least favorite out of any pains or sensations i’ve had so far. luckily, though, it seems like it’s already died down and only happened a couple times today.

my energy has been all over the place. i’m at the point now where mentally i’m much closer to my normal state so i’m once again having the adhd urge to constantly do stuff, but my body’s ability to keep up is far less consistent. sometimes i get restless and can just get up and pace around for a while, but other times i try to do that and get really quickly exhausted. i’m definitely more able to have conversations and feel more like myself now though, even when my body is tired out.

i’ve been thirsty as all hell the past few days. i feel like i’m constantly asking my boyfriend to refill my water for me because i drain it so fast. it’s a very specific kind of thirst, too — like it never quite goes away even when i’m definitely very thoroughly hydrated, and like anything but water can’t even touch it. it’s not a bad thing, getting lots of fluids after surgery is important and i wouldn’t be surprised if that’s exactly why my body is doing it, but it is a bit frustrating to just be incessantly thirsty for days at a time.

my walking posture is getting straighter every day. i still have to hold my chest to walk because of the bandage feeling like it drags things down, but if i’m walking with my mastectomy pillow, it mostly just looks like a typical slouch and not the deep hunch i started with.

at this point, my chest is super sensitive to any kind of movement, and that’s the other thing the pillow has been really good for at this stage. if the bandage shifts at all, if my body moves at all, basically anything — i feel it all in my chest really intensely. it’s not always painful, but it isn’t comfortable either. holding the pillow to my chest helps stabilize things so the movement doesn’t reach the sensitive parts as much, which is really great.

walking up stairs is easier than walking down stairs, which is the exact opposite of what i would’ve guessed. from what i can tell just from moving around, i think it’s because bending your legs up to a higher step pretty solidly relies on your legs and lower core muscles to make it happen, while reaching your legs down to a lower step requires stretching your body out (which is famously not your body’s favorite thing to do after top surgery). it often feels like i almost can’t reach the step below and have to just barely catch it with the balls of my feet. it’s also just generally been good to take the stairs super slow going up or down because you really can’t use the railing — putting enough weight on it to really rely on it at all requires using chest muscles, so the best i’ve been able to do is just rest my hand on it in case of emergency (because i’d rather hurt my chest than crack my head open if it comes to that).

one of the things that makes the stairs hard is that my center of balance is off from hunching, and that definitely affects my walking too. it’s less pronounced now that i’m in the habit of using the pillow to walk straighter, but i have to take shorter strides and sort of shuffle around because longer strides need better balance, and even with the shuffle i’m stumbling more than usual. i already have some balance problems so i’m pretty used to the feeling of it, but it has freaked my parents out a couple times to see me start listing to one side before i catch myself.

fuck reflexes. reflexes are the actual worst. something i didn’t anticipate is that no matter how careful you are to not reach your arms too far or move them too fast, you can never totally account for what you do if something starts falling. a few times now, i’ve definitely reached too far or fast before stopping myself because i saw something about to go down and my brain instinctively told my hands to catch it. i’m not sure if there’s anything you can really do about that, but it’s worth being aware of because it caught me by surprise the first time i did it.

one side of my chest has been consistently more swollen than the other. that side has also consistently drained less, and the fluid it does drain is darker and redder. we asked my surgeon if that was normal and she said there’s almost always one side that drains more than the other, but it’s still something we’ve been keeping an eye on. hopefully i’ll be able to get a more concrete answer at my post-op, once she can see the swelling up close and look at the drainage numbers from the past week.

as i’ve been getting some use of my body back, the pain in my chest has gotten a bit more obvious. it’s milder pain, and when i’m not doing anything it’s mostly painless to the point where i’m going a lot longer between tylenol doses, but when i’m using my body, i can definitely feel it. the fact that i’m not avoiding physical activity like the plague as much means i’m noticing more pain even though objectively my pain levels have gone down — the things that hurt now didn’t hurt less before, i just didn’t even attempt them before because i knew they would hurt so much. now that the pain is down, i can try more things, which means i’m more likely to try something that ends up hurting. of course, you should always try to follow the if-it-hurts-then-stop rule, but you can’t avoid the pain altogether as you learn your body’s boundaries, so i ended up getting to a point where getting better feels like getting worse.

on that note, i’ve also learned that there’s a pretty distinct difference between milder “i should proceed with caution” pain and intense “stop what you’re doing right now” pain. as much as avoiding things that hurt is ideal, it’s not always realistic, but my body has definitely been very clear in telling me what i can and can’t compromise on. in the beginning i was really paranoid about doing anything that caused any pain at all, but now i’m more familiar with where i can push a bit further if needed and where i really need to hold off.

i’ve been getting chills much more easily lately, and they’ve also been SUPER strong. i’ll be watching a show or listening to music and something will give me chills, and it’s a really intense feeling all across my ribs, and even thinking about the thing that caused it brings on a whole new wave. i’m super curious to see if it’s just a temporary result of my nerves doing their thing or if it’ll stick around long-term. it’s not unpleasant at all, i honestly really like it.

i got some food for myself for the first time today (day 6) and it just involved slicing some pretty soft cheese, but wow, it was a workout for my shoulder. i’m guessing it’s because i haven’t really used my muscles in that way for a week, and because not being able to use my chest muscles means i was relying on my shoulder a lot more to do all the work of moving my arm. by the time i was done, just holding the block of cheese to put it back in the fridge felt like lifting weights.

i didn’t change my shirt the first few days but i’ve changed a few times now, and we’ve perfected the art of getting a button up shirt on me without overreaching my arms at all. basically, you want to put both arms into the sleeves before you lift the shirt up onto your shoulders, because once the shirt is on one shoulder, you have to reach back a lot farther to get to the other sleeve. once you have both arms in, you can lift it onto your shoulders and button it. ideally, whoever’s helping you should do most of the work to pull the sleeves over your arms so you don’t have to stretch your arm out to get them on. i’m sure that’ll be overkill once i have a bit more mobility, but for now, it works great. it definitely would be tough if the shirt was fitted though, so i’m glad i went up a size.

i hope my posts like this have been helpful, or at least interesting to read! i’ll definitely keep updating as time goes on and things change, and i’m also going to work on a breakdown of my experience at the hospital pre- and post-op, as well as my post-op appointment experience once that happens tomorrow.

y’all are getting the good, the bad, and the ugly of my recovery experience. i know a lot of this has been very focused on the bad and the ugly so far because surgery is generally rough, but i’m going to see my chest again tomorrow so stay tuned for some good!

beep beep sometimes when you have been in survival mode for a long time the parts of you dedicated to Wanting Things atrophy and you forget how to envision a future that feels rewarding because you are busy with the business of staying alive, and it can seem like your life must be pointless because you can’t imagine any long term goals. sometimes even when you leave survival mode you can’t remember how to Want Things. that doesn’t mean you need to give up on having a good and fulfilling life, it just means that Wanting Things is a muscle you need to gradually strengthen. the part of you that has dreams and aspirations is still there, it just fell asleep, but if you wiggle it enough it can and will regain feeling. it’s okay to start small

In the age of automation and artificial intelligences, I suspect people would rather change 1 & 2 to a universal basic income and a 20 hour work week, but it certainly is a start.

weird anti ideology finally leaking out into the mainstream

This post is your reminder that you are not obligated to blog about current events.

Things are bad. Really bad. Do not let people guilt trip you into tormenting yourself even further over the fact that things are bad. Doomscrolling is not activism.

If you're just on tumblr to blorbopost or reblog pretty pictures, you are not harming people by inaction.

You are not a bad person for not dedicating every aspect of your life and leisure space to whatever disgusting mask-off attack on human life and dignity some government has decided to enact.

Take action where you can, but don't confuse doomscrolling and digital self harm for action.

If you need to lose yourself in blorboposting, go for it.

If you need to log off for the day, whether it's to take irl action or to protect what little sanity any of us have left over the past 7 years, then by all means, do.

Morale is important. Hope is important. Small joys keep us from burning out completely in times like this. Do not let any "if you don't reblog this I'm judging you" guilt trip convince you otherwise.

So a free tool called GLAZE has been developed that allows artists to cloak their artwork so it can't be mimicked by AI art tools.

AI art bros are big mad about it.

Activism is not cold-calling.

Activism is not cold-calling, and this is critically important to understand.

I'm seeing a lot of posts on here about 'building bridges' and 'finding community,' and then (extremely valid) response posts saying "BUT HOW??" And I'm going to explain something that can be very counter-intuitive: there is strategy involved in community.

As a longtime volunteer labour organizer, I’ve taken and taught many trainings on the strategy of talking. Something that surprises a lot of people is the very first thing you do in a union campaign. You sit down with your organizing committee, take out pen and paper, and literally map it out. You draw a physical map of the workplace: where are the entrances, exits, break rooms, supervisor offices. Essentially, ‘where is it safe to have a union conversation.’ Then you draw another physical chart of your coworkers. You sort out who is union-friendly, openly hostile to unions, or somewhere in the middle, and then you plan out very deliberately and carefully who talks to whom and in what order.

Consider: If Vocally Leftist Jane walks up to Conservative David and says "hey what do you think about unions," David is going to shut down immediately. He's not inclined to listen to Jane. But if Jane talks to Moderate Jason and brings him into the fold, then Jason is a far more effective strategic choice to talk to David, and David may actually hear him out without an instant reaction.

IMPORTANT CAVEAT: If Conservative David turns out to be Alt-Right David, and could be dangerous to follow organizers, we write him off. We are not trying to reach Alt-Right David. We are trying to reach Conservative David, who may actually be persuaded to find solidarity with other employees as fellow workers. Jason is a safe scout to find out which one he is. It does no one any good if Leftist Jane (or even Moderate Jane who is a visible minority) talks to Alt-Right David and puts herself on his radar. Not only has she done nothing to convince Alt-Right David to join a union - she's probably actively turned him against the idea - but now she's also in danger and the entire campaign is at risk. NOBODY WANTS THIS. Jane was NOT a hero for doing this. The organizing committee was foolish and enacted a terrible strategy to everyone's detriment.

Where you can make a difference is with people who will listen to you. You having a conversation with your well-meaning but clueless Centrist Democrat Auntie, and maybe gently helping her understand some things the media has been glossing over, is way more strategically useful than you marching up to MAGA Neighbour You've Met Once and trying to "build community" or "understand" them. They don't care. They're impervious, dangerous, and cruel. But maybe your beloved auntie will think about what you said, and then talk to her friend Anna who IDs as "fiscally conservative" but didn't vote because she can't bring herself to get on board with Trump. Then perhaps Anna talks to her brother Nic who has MAGA leanings but isn't all the way there yet. Proto-MAGA Nic would not have listened to you, nor would he have listened to Centrist Democrat Auntie, but he might absorb some of what his sister is saying.

This is not a cop-out or an echo chamber. This is you spending your time and energy strategically and safely. You are not a useful activist to anyone if you’re dead. Anyone who is telling you to hurl yourself directly at MAGA assholes like cannon fodder has no understanding of the strategy behind community building, and you should feel comfortable writing them off.

Last point: If you are tired, emotionally devastated, and/or in danger: take a break. This post is for people who would feel better jumping into action, not for people who are too overwhelmed to even think about it right now. You are worth so much even if you’re not actively Doing Activism, and your rest is worth more than “a break period so you can recharge and Do More Activism.” We all deserve the individual dignity of being worthy of comfort, rest & safety just on the basis of being human, outside of whatever we're doing for others' benefit. To deny ourselves that dignity is to devalue ourselves, and that’s the absolute last thing any of us should be doing right now.

Doing things you like is not a waste of time. Watching series, playing video games, listening to podcasts, being creative etc. If it makes you happy, it doesn't matter that you're not productive during that time, what matters is that you are enjoying yourself, generating happiness. Those are the BEST moments. Chilling, relaxing, having fun. Don't let people guilt you into not enjoying the best parts of your day.

King Arthur Baking

Tips for baking with arthritis and other hand-related chronic pain

With some changes to techniques, a careful selection of kitchen tools, and tips from fellow bakers, the joy of baking can live on.

I luckily haven't had to deal with much chronic pain or hand pain yet, especially with regards to baking (crochet is another story). That said, these look like some pretty solid tips! There's also some in the comments section.

The sign of high quality is the fact the book was banned by the government. Trash literature NEVER EVER had any troubles with the law.