"The purpose of a system is what it does" implies fascinating things about my digestive system.
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@recalledrobot
"The purpose of a system is what it does" implies fascinating things about my digestive system.

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@bjornlanen after the Rick Owens SS26 fashion show in Paris, France June 2025.
this fit goes insane. matching the matte silver of the moroccan style bangles to the body chain and the aluminum crutches is a level of crip drip that didnt actually seem achievable to me prior to this photograph appearing on earth. and of course its a rick fit like that makes sense for this more than any other designer
my me hurts
ouch ough ouch. #MyMe
morning/night person is a false dichotomy because its impossible to have any energy at any point of the day
I wish I could go to a doctor and just list every single symptom I ever experienced no matter how small and unconnected they seem and the doctor is nice and patient and knows everything and they nod and smile and explain that every symptom I ever experienced is connected to like one rare and often overlooked issue that's sooooo easy to fix with like. a pill. and then I never have to worry about anything ever again.

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i understand its chronic pain but every day seems a bit excessive
body horror? uhh yeah having a body is horror
my body hurts in lots of different ways
12x16 in. acrylic on canvas. 2023.
Aaron Taylor Art provides original paintings, art prints, pins, tshirts, hoodies, and 3D work made by independent artist Aaron Hutts.
poor memory is a huge deal and i wish people wouldn't diminish it by saying "oh yeah i can't remember what i had for breakfast lol."
i can't remember the first 10 years of my life. i can't remember entire days, weeks, months at a time. i can't remember entire people, i can't remember names or faces. i can't remember when things are scheduled for, my calendar app on my phone is booked to the max with reminders and task checklists. i can't remember when i moved into what home when, i can't remember important milestone dates like when i got or lost certain jobs, or when i started a new hobby.
that's what i mean when i say i have poor memory. poor memory is so scary for the person who has it. it's not a quirky thing, everyone forgets small details. memory problems are scary because you can go through entire events or days with no memory, or plan for things in the future that you can't recall ever even looking into or scheduling. it's not a funny haha kind of thing, it's serious, and it affects a lot of people in very unavoidable ways.
not being able to plan for appointments or work schedules, not being able to remember people's names or faces, not being able to recall whether or not you were present for something or whether or not you met someone, not being able to keep track of what's happening on what dates and losing track of items because you can't remember where you put them are all very real problems, and anyone dealing with them deserves to be taken seriously, and not diminished when they choose to speak up about it.

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I think some of us ambulatory wheelchair users are getting pretty close to (or already are) throwing full time users and higher support needs disableds under the bus. And that shit needs to be shut down NOW.
It's the problem of: "how dare they treat us like those people!"
The problem with ableists isn't that they assume we can't walk The problem is they assume we don't need our wheelchairs if we can. That we don't need our handicapped placards or transport vehicles. That we are taking advantage of other "actually" disabled people, that the ableists also don't give a shit about unless they're using them as an excuse to be ableist.
The problem with ableists isn't that they assume we are intellectually and/or developmentally disabled. The problem is they assume that every intellectually/developmentally disabled person needs to be treated with baby talk, dismissal, and ignorance. That they don't see them as people and refuse to listen to intellectually and developmentally disabled voices without making fun of them.
Stop throwing people with higher support needs under the bus. Stop doing what the abled neurodivergent community did to all physically disabled people. Us cripples gotta stick together and fight for one another, not push one down to make ourselves somehow look better to ableist fucks.
Things my body canāt tolerate:
- Heat - Cold - Humidity - Rain - Extreme Dryness - Over exertion - Mild exercise - No exercise - Standing up - Sitting down - Lying flat - Lying on my side - Lying on my back - Lying on my stomach - Sleep - No sleep - Eating - Not eating
If thereās one thing I feel I can unambiguously brag about, itās that Iām great with patients who are in pain crises. Iām tenacious and stubborn about lowering 10/10 pain to something more manageable. I got a patient in ā25 out of 10ā pain at start of shift down to a 4 by midnight and it only took opioids, Tylenol, muscle relaxants, ice packs, warm blankets, fresh coffee, repositioning, an abdominal binder I scrounged up, a phone call to the surgeon to get lidocaine patches ordered, and some serious chit chatting with the patient while we waited for all that to kick in. We didnāt end up needing IV medication, we didnāt have to increase opioids, we didnāt need to add any medication that would potentially delay discharge, and the majority of what I did is all stuff she can also do at home so itās a sustainable pain management plan. This is my absolute favorite thing with nursing, I love love love managing pain, I know I talk about it a lot but itās the most satisfying thing in the world. I love watching someone emerge from a horrendous haze of pain until they feel like a person again. Also Iām scheduling this to post well after my shift is done so that I donāt jinx anything, also while I was writing this post I had to take a quick break for two hours half way through because someone started having a seizure. My job is wild. I used to be a barista.
@irrellavant oops you activated my trap card of asking about something I care about, please enjoy this monologue. Also itās not comprehensive, canāt stress that enough, this is a just a lil long tumblr post made by a just some nurse who isnāt a palliative care expert and is also writing this on her cell phone on break. Some of this stuff is gonna be pretty obvious! I just would feel remiss if I left it out. And also please anyone who has pain or addresses pain, please feel free to add on. I'm always looking for new ideas and new insights, especially from the patient side so please please do chime in if you like. Okay SO
For me, the biggest thing is conveying to the patient that you care that they are in pain and that you are trying to make it better. I remember I had a patient who was in horrible pain all night, we never got it down, we never got her comfortable, but at the end of the night she thanked me so sweetly for trying and she said that knowing I was taking her pain seriously helped her feel better even if it didn't make her hurt less. Just because someone is in pain, it doesn't mean they have to suffer, if that makes sense. I think one of the worst things about pain in the hospital is the feeling that you've been abandoned to experience it. Someone gives you a pill (or not even that) and says "okay bye" then you go back to writhing in agony. I make sure that before I leave the room of a patient who is still in a pain crisis, that I let them know what the plan is and what the next step is. "You just got 5 mg of oxycodone, which will take up to an hour to take full peak effect. If your pain doesn't get better after that hour, I can give you another dose" or "I'm going to go page your doctor to see if I can get you an additional dose" or "I need to step away right now, but I'll be back in 20 minutes to see how you're doing and if the heating pad is helping." I tell the patient "we're gonna try X, which should do Y, but if it doesn't, the next step is Zā and then I make sure to follow up with them.
I also try to be honest. I never promise that they'll be pain-free, just that we'll keep trying. We aim for small but achievable goals. If it's acute pain, like you just had a surgery or something, I try to contextualize it for the patient. "We're not gonna get you pain-free ten hours post surgery, but we can get you more comfortable than you are right now." Patients are usually fine with being a six outta ten pain if theyāve been otherwise sitting at a nine. Since Iām night shift, I often tell them my goal is for them to get at least a couple hours of sleep and ask them how that sounds.
Then pharmacologically, I look at the meds I do and don't got. If a patient is having incisional pain, lidocaine patches on either side can be great for just numbing the area up. If the patient can get oxy every 6 hours but routinely gets very painful again just three hours after taking the med, then maybe the dose or the timing is not right. Maybe under prns we've got so many opioids and not a single NSAID, and there's not a contraindication. Maybe their pain is caused by muscle spasms, in which case a muscle relaxer could be a great addition. Maybe the pain is nerve pain that would respond much better to gabapentin instead. Or maybe you need IV dilaudid to quickly get the breakthrough pain down to a manageable level so that the other meds have a fighting chance to do anything. If meds arenāt available, these are things you can page the doc about and discuss with them.
I'm also a big fan of around the clock medications for patients that have had poor pain control. Ask patients if they want to be woken up for pain meds (again, patients that have been that painful usually say yes). Explain how it's easier to keep the pain low than it is to play catch up after pain spikes. Pain control works best when you avoid the spikes in the first place. There's no point getting someone out of a pain crisis if you then withdraw all your cares until they're in a pain crisis again.
I also try plenty of non-pharmacological methods of lowering pain or enhancing comfort. (Sometimes you can't lower pain! Sometimes all you can do is enhance comfort!) Does the patient have a topical cream that helps with pain? Could it be applied while gently stretching the muscles and really going to town with a foot massage? Has the patient just thrown up and would like a bed bath to feel clean again? Would they benefit from heat? Or ice? Or warm blanket? Ice and then on top of that a warm blanket? Do they want some pudding? Do they need a little candy from the nurse station candy drawer? If their lower back hurts from being in bed so long, can we get them out of bed? Even if it's three am and we need to lift them with a Hoyer to their recliner, that might still be the best intervention. I had a patient where the only thing that helped her hip pain was going on walks so over the night we went on a bunch of walks. Worked better than any meds.
What about conversation? Do they need someone to cry with? Do they want to talk about pets or their diagnosis or the bizarre TLC show that's playing on the TV? A lot of this is feeling out conversation, and I don't have great advice for that besides if you make yourself obviously available and interested in people, they tend to open up to you.
Also Iām a big fan of asking if thereās anything I can do while we wait for the meds to kick in. Thatās usually when I do a bunch of those non-pharm interventions, because itās efficient (we are in fact waiting for the meds to kick in) and it makes the waiting less miserable. I think it also makes the waiting feel less helpless. We arenāt just waiting an hour for the dilaudid to do something, weāre also tucking you in with a warm blanket and giving you the finest jello I could scrounge up.
And obviously, I ask the patient if the pain they're currently feeling is uncommon for them, either in the type of pain or the intensity. This is good for general assessment stuff and to figure out if the pain itself is the problem to be managed or if there's something new causing the pain. If the cause of the pain can be managed, that's my priority with pain medication as a supportive therapy because like if you're a paraplegic and suddenly you're complaining of an intense pounding miserable headache, giving tylenol isn't the right intervention when what I should be doing is assessing for autonomic dysreflexia.
And I ask them about the type of pain they're having and if they know what works for them to manage it. Plenty of chronic pain patients can tell you what is and isn't effective. Maybe at home they're on 50 mg of oxycodone a day, but right now in the hospital they're only prescribed 40 mg. Or hell, they're still getting 50 mg but they're here because theyāre sick so their baseline level of opioids isn't gonna be enough because that's to manage their every day pain and not their new super hell hospital pain. Or they know aspercreme works like a dream on their legs but not on their back. Or patients know that ibuprofen works better for them for this type of pain than a fentanyl patch does, or they don't want to take dilaudid because it makes them nauseated, in which case you can try premedicating them with an antiemetic.
Also when your shift is done, write down all the stuff that worked to control pain in your nursing note so thereās a record of it in case someone needs to do it again.
If thereās one thing that I have found successful though, and I know this might sound cheesy, but it is CARING and showing the patient that you care. You care that they are in pain, you are working with them to get them more comfortable, if something doesnāt work you will keep trying, because pain sucks and you care that they are in pain. Even when you have to leave their room, you let them know that you will come back. They arenāt left totally alone to suffer. Again, sometimes you canāt decrease pain but you can increase comfort. I believe there is genuine comfort in knowing that someone is trying very hard on your behalf to make you feel better, even if they donāt make you feel better.
Iāve had chronic pain for 16 years, and this is most reaffirming perspective on pain Iāve ever heard from a healthcare worker. Thank you for caring and doing everything you do; it seems like such little things but to those with chronic pain, it means the world.
shout out to people with unclear or unknown prognoses.
For people whose condition is under researched. For people whose condition is rare. For people whose condition doesnāt react to typical treatment. For people whose condition interacts with other comorbidities in unpredictable ways. For people without access to specialists.
It can be exhausting not knowing how your future (weeks or decades) will look. And it can be exhausting trying to explain to people that you donāt have the answers, that you donāt know if youāll get better or when. It can be scary not knowing how to move forward, and what treatments to seek.
Look after yourself best you can with the uncertainty. Youāre not alone.
I don't think people understand how much energy it takes every day to be mentally and physically ill and just⦠keep everything on track.
Every day, several times a day, I work to make sure I am drinking enough water. If I don't. It will affect my chronic illness. I will feel ill and everything will be harder.
Everyday I try to make sure I eat two to three meals. Sometimes it's hard because I feel ill, sometimes it's hard because, mentally, food is repulsive. If I don't eat I will end up feeling more ill.
When I am standing I have to make sure I don't stand for too long. If I don't I will feel faint.
When I am sitting I have to make sure I am not sitting the wrong way. If I don't I will strain my joints, I might pull them out of place. I will be in pain for days.
Sometimes a change in the weather will make me feel ill.
Sometimes a change in the air quality will make me feel ill.
I have to check the ingredients of everything I eat or I will be ill. I'm not just looking for one thing. It's dozens of things. Some things only become a problem depending on the amount. Some things only become a problem depending on how they are processed. It's a constant struggle to remember everything. If I make one mistake I will have digestive issues.
But if I get too stressed or am having other chronic problems flare up I might have digestive issues anyways.
When I am stressed I try not to tense up my muscles. If I do, I will be sore for days. It might affect my joints.
But it's easy for me to be stressed. Small changes to my routine are painful. I get overwhelmed by people, by noise, by unexpected change. I work hard to manage it but it's hard.
Sometimes something very normal happens but I have trauma so it feels incredibly not normal for me. It might take days to figure out what exactly happened and how to dig myself out of my emotions.
My memory is poor. There is so much I have to remember to stay mentally and physically okay. Not even good. Just okay. It's so hard to remember everything. There is almost always something falling through the cracks.
I get tired easily. Even just maintaining my mental and physical health is exhausting. But if I don't do it it is even MORE exhausting.
And it starts all over every day.

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I think Tumblr will enjoy this image
[ID: A raven perched atop an accessible parking sign. It appears to be pointing to the sign with one toe.]
i started doing things scared and doing things alone years ago the real challenge is doing things tired