#spoonie nurses

[thedisablednaturalist]

Tw for weight loss mention

The whole exercise will cure your disability thing is a fucking joke. Yes exercise is beneficial for your health, but only if you aren't already on shaky foundations. You need to be on a treatment plan that WORKS before going into the maintenance phase. You wouldn't do regular maintenance on a broken item, you'd work on getting it up and running first. And maybe it would even need specialized maintenance afterwards if it's especially fragile.

I have fibromyalgia and acute degenerative disc disease. My immune system attacks my nerves and discs in my spine are slowly calcifying and causing the bones to constrict and damage my nerves (i think thats how it works). I have days where it feels like my body is on fire from nerve pain and days where it feels like my spine is about to rip from my back. And days where I have both (like today!). I get numbness in my hands and feet. I have horrible migraines. I can no longer walk unaided more than maybe 5 minutes without severe pain. I have something wrong with my knees and hips but the doctors don't know what yet.

You'd think I live an obviously seditary lifestyle correct?

Hell no.

I walk aided on average 6 miles a day over difficult terrain OUTSIDE of regular activity almost everyday. My legs are muscular and strong. I get my heart rate up and a good sweat, like all the gym rats swear on. I am often doing physical labor such as weeding, digging, sample collecting, pruning trees etc.

I'm not saying this to make other disabled people feel bad or prove that they can do anything if they just tried harder. This is an extremely painful lifestyle I've chosen that takes a lot of lifestyle management AND BOUNDARIES to keep up with the work. I also have an extremely forgiving boss who is also physically disabled and knows what I'm going through (deciding between your passion and your health and having to do so each and every day) No one should ever be expected to do what I do. I'm not even sure if I should be doing this myself.

This is to prove that exercise? Has not cured me. My muscles are strong but still hurt as if they're broken and I have to take more breaks than my coworker. I am constantly getting out of breath and I flare up regularly if I'm not careful. I am in excellent physical condition outside of my disabilities. I go to different doctors several times a month to get checked out.

I previously went through a diet program and lost a lot of weight (basically starving myself and got off my depression meds which cause weight gain but are also the only ones that work) and guess what? That didn't do shit either!!! I still felt horrible!!! I've since gained back the weight anyway after switching to focusing on adding more nutrient dense foods than taking stuff away from my diet (also muscle weighs more than fat, and fat helps cushion my aching joints and spine).

The muscle doesn't do shit for my disabilities outside of maybe some stability. Exercising everyday doesn't make the pain go away. Without my medications and aids and nutrition plans and steroid injections and spinal adjustments and physical therapy (that takes my fibro and spine into account) and alternative work methods I WOULD NOT BE ABLE TO DO WHAT I DO. Exercise alone is like trying to make a car run with no oil. Yes it'll go but it'll get more and more damaged till it can't and will need its entire engine replaced!

And yet I see new doctors and they look at me and the first thing out of their mouths is do I exercise? I should try doing a little every day :) and then i fucking blow their minds when I tell them about my job. No longer can they use that fucking cop out on me. I've been through this rodeo. Ive tried their suggestions. If you are in pain and nothing is helping? Exercise ain't going to do SHIT. You need to get to a point where you can move without severe pain first (if that's even possible). Then and only then should you consider implementing regular exercise if you can. Also weight loss talk is a red flag and a cop out. They made me lose 50+ lbs before they would look into the reasons behind my pain. Weight loss did nothing for me and exacerbated my pain.

I am living proof that all that shit is a lie and a cop out. That is the point of this post. I cannot believe people with serious medical conditions are being forced to put their bodies through extreme duress just to be believed. You are not disabled because of laziness or because you sit a lot. Plenty of people live seditary lifestyles and do not live in constant excruciating pain (they may develop disabilities later in life due to this however, and should be doing preventative exercises to maintain their health)

Please, share my story with doctors. Use me as an example. I am proof that "exercise first treat later" does not work. I should not have had to wait years to have my pain validated. I'd rather hundreds of fakers get (what? A blood test? An MRI?) than one chronically ill person get told to try yoga and go away by a doctor.

[plague-of-insomnia]

WIP Wednesday: New AU, Sebagni Sickfic

This excerpt is from a new self-indulgent AU I’m working on. It’s set in modern Houston, like many of my fics, with a human Sebastian with a rare chronic illness, a heap of medical (and other) trauma he hasn’t processed, and his new live-in nurse, Agni.

Over the course of the story, Agni gets Seb to heal and accept his intentions as genuine, and the two of them become closer.

Here’s an extra-long snippet to hopefully get you as excited for this as I am, lol.

[No real TW here, but it does deal with medical issues, chronic illness, with minor references to PTSD/panic attacks.]

“This is Agni,” Tanaka said as they approached. “Agni, this is Sebastian.”

Agni smiled. In another life, Sebastian may have appreciated how incredibly handsome he was. He’d always been attracted to tall men, but that was behind him now. No one could look at him like this: stuck in bed, barely able to shift himself, a shell of who he once was, and see him as anything but an object of pity at best, or someone who should be euthanized at worst.

A stab of physical pain as a muscle spasmed in his side, blending with the emotional anguish these thoughts brought forth, the brief image of him that almost made Sebastian choke on a breath. He grunted, then did his best to shove it all out of mind. No way he could let his guard down around a new nurse. No matter how bad he was feeling.

“They outsourcing now?” Sebastian spat bitterly. He watched for Agni’s reaction. He didn’t even twitch, but continued to smile. They always seemed so nice and helpful and friendly when Tanaka was around. But as soon as he and Seb were alone—

“It is a sincere pleasure to meet you,” Agni said formally, without a hint of an accent Sebastian could detect. He felt a tiny sting of guilt for what he’d said, but he dismissed the thought before it could blossom. “Do you prefer I call you Mr. Michaelis, Sebastian, or something else?”

Eyes narrowed with suspicion, he replied, “Sebastian is fine.”

Agni nodded. He took a hesitant step closer. It hadn’t escaped Sebastian’s notice that Tanaka had unconsciously placed himself between them. “Can I ask how your pain is right now?” Agni took a tiny notebook from the pocket of his bag, along with a pen, and began to jot some things down.

Tanaka nodded as if to urge Seb to be honest. But what would that solve? It’s not like Agni could really do anything about his pain. Sebastian was used to it. He hadn’t had a single pain-free day in more than ten years. Unless Agni had a magic wand hidden in his bag, the best he could do would be meaningless platitudes. Like “the new anti-inflammatory medicine will start working and relieve your pain soon,” or some shit like that.

“Why the fuck do you care?” Sebastian spat, not in the mood to make nice.

A small frown crossed Agni’s stunning features before he shifted into what was presumably his sympathetic face. “I would like to make you as comfortable as I can. I’m not here only to attend to simple medical needs like giving you medication. I want to improve your quality of life as much as I can.”

Sebastian scowled. It didn’t help that breathing was harder, the pain magnifying, perhaps exacerbated by stress. If he’d had the strength, he’d have hurled something at him and yelled for Agni to just fucking leave him be.

Agni didn’t need to be a mind reader to gauge Sebastian’s mood, but he was either a very good actor or more patient than most, because he didn’t crack yet. “It seems like you’re uncomfortable right now. Could I examine you quickly?”

No. But behind Agni, Tanaka whispered in Japanese, “Behave. I have a good feeling about this one.”

Subduing a growl, Sebastian nodded. Braced himself for rough handling that would aggravate his pain.

Agni set his bag on the side table and removed some supplies, including antibacterial gel he used to clean his hands before pulling on a pair of blue gloves. His forearms were muscular without being excessive, and Sebastian found himself watching as the man worked, apparently not the type to make meaningless chitchat. That was good, at least.

He hated the ones who felt like they had to constantly fill the silence with their babbling, talking to him like he was a toddler and not a grown man in his 30s.

“Let me slip this on your finger,” he said, not reaching and forcefully grabbing Sebastian’s arms like most nurses would have, but instead waiting for him to offer an index finger for the little oxygen meter he clipped onto the tip. “And now I want to listen to your heart and lungs, if that’s all right?”

Sebastian sighed, winced when it pulled and spiked his pain, but quickly pushed his face into neutral. “Fine.”

Tanaka walked around to the other side of the bed, adjusting the curtains so the shifting sun wouldn’t be in Sebastian’s eyes.

Agni was delicate. He warmed the head of the stethoscope with his hands before slipping it under Sebastian’s T-shirt and listening intently in various spots before asking him to breathe deeply and slowly. He even managed to slide the stethoscope between Sebastian and the bed to listen to his back without him yanking him up and away from the mattress like a sack of potatoes. If Sebastian didn’t know better, Tanaka had told him exactly where his pain was bad today, and he was actually taking that into consideration. Had to be for show.

“How are you feeling right now?” Agni asked as he removed the stethoscope and replaced it in his bag.

“Well, I was going to the opera tonight, but I’m a bit tired, so I may have to cancel my plans.” Sebastian glared at the neglected electric wheelchair in the corner of the room. The one he’d been so excited for when he’d first received it, believing he would have newfound freedom with it, that he’d be less encumbered by his disability and illness. That he would have accepted him—

A wave of nausea overwhelmed him and he had to cup his hand over his mouth.

Agni worked quickly, grabbing a kidney-shaped emesis basin from the table and quickly placing it beneath his chin, deftly sliding a hand behind his back to support him without causing him pain.

But Sebastian was able to swallow it down and shove Agni away as well as his limited strength allowed.

But Agni didn’t seem to mind. He nodded, checked the monitor, and said instead, “Your oxygen levels are a little lower than I would like. Are you having any trouble breathing?”

Sebastian glared, but the jerking of his stomach earlier had caused his entire rib cage to feel like it was aflame, and it was easier not to breathe until the burn got so bad he had to inhale. Despite doing all he could to stay focused and in control, he could feel panic setting in. No. Not now. Not with this new nurse he didn’t know from Adam.

Gasping and gripping the sheets, Sebastian felt darkness swirling in on the edges. He struggled against it, fighting himself, fighting his body, fighting traumatic memories that tried to yank him further away from control.

A warm hand on his head. A mask placed in his face. A soothing, deep voice urging him to breathe, to relax, that he’d be OK. Someone held his hand.

With the machine’s assistance, despite the pain, his lungs filled and emptied due to the shifting pressure, and the dizzy, swimming sensation faded to clarity. He hated relying on this thing. The bipap machine. But it helped when his muscles were especially weak, or in moments like this. Let him rest. Without fear he’d stop breathing.

Agni pulled something else from his bag. A small tube. “Have you ever used this ointment before? It’s a topical anti-inflammatory, and I’ve had many of my patients swear by it. I could put some where your pain is worst, if you’d like.”

Go fuck yourself, Sebastian wanted to say, but he was too drained.

Tanaka squeezed his hand as if to encourage him to accept Agni’s help.

“It absorbs quickly, so you don’t need to use too much. I’ll be as gentle as I can.”

Sebastian offered a small nod and pointed lazily to his torso and back. His heart was still racing, and he would have preferred Tanaka do this, but that would take more energy to explain than he had right now.

Over the next few minutes, Agni carefully applied the medicated cream to Sebastian’s sides and back, Tanaka letting Seb lean against him to ease the strain as the nurse coated his back with it. Sebastian was almost stoic through it all, and yet somehow Agni seemed to have a sixth sense for where his pain was worst, concentrating his ministrations there while keeping his touch feather-light.

Then, with Tanaka’s help, he shifted Sebastian onto his side, layering pillows to support his most painful areas. Agni worked slowly so as to minimize spiking his pain. No nurse had treated him so gently or with so much consideration. If he hadn’t had dozens of bad examples, he might have been tempted to believe Agni actually did care.

“This’ll take some strain off your ribs,” Agni said in a low, rich voice.

Now that the adrenaline crash was hitting him, and the cream was dulling the pain, exhaustion began to pull Sebastian so strongly he struggled to keep his eyes open.

“Get some rest. I’ll check on you later.” Agni slipped the call button into Sebastian’s hand, petting it momentarily as if to give him reassurance, though it felt patrionizing. Still, it was considerate enough. Meant if he woke up in agony he wouldn’t have to move to call for help.

Tanaka stroked Sebastian’s arm soothingly before pulling the blankets up around him. “The heated blanket will help,” he whispered. “Sleep for a while.”

Sebastian gave up fighting and let his lids slide closed.

I hope you enjoyed this! If you do, let me know..!

I’m really hoping I’ll be able to post the first chapter of this this month.

Reblogs are always appreciated !!

Special thanks to @apocalypticromantic666 for all their encouragement and support!!

[x22817]

Hekate in her Bean Formation at our 8am cardiologist appointment (making me hella jealous)

[puffyrice]

Hey guys :) I haven’t been active on here lately, but I did make an Instagram account for nursing, studying, and chronic illness content. If that interests you, check it out!

@thelupusnurse on ig

https://www.instagram.com/thelupusnurse?igsh=cmwyNzkzazZqbzlp

[spacedocmom]

Doctor Beverly Crusher @SpaceDocMom If medical appointments freak out you even when you have kind, supportive health care workers, communicate with them in advance to come up with strategies to mitigate your stress. Good HCWs want to set you at ease, and it's easier if they know what's needed in advance. emojis: black heart, blue heart, masked 1:44 PM · Aug 27, 2023

[this-is-me19]

Thousands with disabilities subjected to segregation in these three states

Michael Loria

USA TODAY

A family wonders how a cousin “slipped through the cracks” and wound up in a state nursing facility not long after her 18th birthday; a mother wonders how she lost her daughter to the same system; and a woman in her late 50s longs to leave a state facility to see her family again.

These are among the findings of an extensive Department of Justice investigation into how three states – Missouri, Utah and Nebraska – illegally segregated people with mental health disabilities. Federal prosecutors found that the states are unnecessarily institutionalizing thousands of people in state facilities, cutting them off from family and the rest of society.

The investigations date back to March 2021 based on numerous complaints.

“I have a dream that one day I will be free. Free to live on my own, free to live within my community, free to have overnight visits with my grandchildren,” says Angela, the woman in her late 50s, in the Missouri report issued by the DOJ. The federal report quotes people by their first name only. “Free to not be told who I can associate with, free to not have someone place me in a nursing home and leave me, without any regard to my well-being mentally and physically, most of all just free to live my life.”

The investigations found widespread violations of the Americans with Disabilities Act, which says adults with disabilities must live in as integrated of settings as possible.

"This is about weaving people with disabilities into the tapestry of American life," Assistant Attorney General Kristen Clarke of the Justice Department’s Civil Rights Division told USA TODAY. "This is about bringing an end to the unnecessary segregation and isolation of people with disabilities in our country. And it's about recognizing their dignity, their autonomy and their independence."

The investigations were published around the 25th anniversary of the 1999 Olmstead v. L.C. Supreme Court decision which upheld the principle that public entities must provide community-based services to people with disabilities to prevent segregation.

"Our work is about breathing life into the ADA's integration mandate," Clarke said. "We hope that our enforcement work sends a loud message to jurisdictions about the steps that they must take to comply with the law, and specifically to comply with the ADA."

The office of Missouri Gov. Michael L. Parson did not respond to requests for comment. The state cooperated with the Justice Department’s investigation, according to the report.

The report from the DOJ is one in a slew of investigations that have also gone after Utah and Nebraska for similar practices.

A federal investigation into practices in Utah found that the state is segregating people with disabilities by placing them in isolated “warehouse-like” facilities for day programs; an investigation into Nebraska’s practices found the state was also placing people with disabilities into segregated day programs and segregated living facilities.

In a statement, Utah’s Department of Health and Human Services said it’s committed to improving state treatment of people with disabilities. Nebraska’s Department of Health and Human Services said it was disappointed with the Justice Department’s "allegations,” adding that Gov. Jim Pillen’s administration had already shown its commitment to improving care for people with disabilities.

'Highly restrictive and controlled' in Missouri

The 45-page DOJ report on Missouri’s treatment of people with mental disabilities details how the state systematically funneled people into state nursing facilities, even though almost none needed even short-term stays.

The facilities come with skilled caregivers and are commonly known as nursing homes. But more than half of the people covered in the report were under 65 and didn’t require the care offered. The people covered in the report had been inside them for at least three years on average, and around half were clustered at just 39 of the state’s 500 nursing facilities.

The people interviewed in the report describe prison-like conditions at the facilities.

“They are highly restrictive and controlled settings that isolate and segregate residents by severely limiting or entirely cutting off their relationships with loved ones and their community,” the report says, “preventing them from interacting with non-disabled people.”

The isolation inhibits residents from pursuing work or education, which the report called “hallmarks of a segregated institution.”

“My son had a life before they took him there and now, he has nothing,” the mother of a man named Kelvin is quoted in the report as saying.

The DOJ investigation was based on reviewing state documents, data and interviews with dozens of state officials and county officials who are appointed guardians for people with disabilities, plus 130 interviews with people directly impacted by the state’s practices. Investigators inspected over 60 sites, including psychiatric hospitals and sites housing people with mental health disabilities.

Rules, according to people who described the facilities as like jail, included no telephone use, mail, freedom to leave and just one hour outside per day.

How do people end up there?

Federal officials found Missouri relies on state institutions more than almost any other state. Nearly 3,300 people without Alzheimer’s or dementia have been in such institutions for over 100 days as of March 2023, according to the report. They hold an average of 95 residents but range in size from 47 to 225 people.

Missouri places people with bipolar disorder or schizophrenia in its facilities at one of the highest rates in the country. At 10 of the 39 facilities, adults with either bipolar or schizophrenia diagnoses account for 82% to 90% of the population in 2021.

The people covered in the report have “low care needs.” Nationally, low-care residents account for 9% of people in nursing facilities; in Missouri, they account for 25%. The rate of people under 65 is more than twice the national rate of 18%.

The report attributed the widespread practice to the state’s court-appointed guardianship system, which it called a “pipeline to a nursing facility.” The pattern in Missouri is that people with mental health disabilities cycle in and out of psychiatric hospitals; they get assigned a guardian, either family or a public administrator because they’re found to be unable to care for themselves; and then, frequently, the guardian places the person in state facilities.

Thousands have ended up in nursing facilities as a result of guardianship. One unnamed person cited in the report called the court-mandated oversight a “sentence to be locked in a (nursing facility).”

Guardians are also allowed to set limits beyond those set by the actual facilities.

“Prisoners have more rights than a person under guardianship has,” said a resident named Angela. “Anything I do or have pleasure in, like smoking, can be taken away (at) the whim of my guardian.”

Alternatives to institutions

The people in Missouri institutions instead need community-based services, according to the report, which allow them to live in their communities in compliance with the Americans with Disabilities Act. All are offered in the Midwestern state but not widely.

The alternatives, the report says, include:

◾ Assertive community treatment: an evidence-based model where people with mental health disabilities are treated by people trained in psychiatry, social work, nursing and other fields.

◾ Permanent supportive housing: another evidence-based model where the person with a disability is limited to spending up to 30% of their income on rent for housing that’s in a community or building not reserved for people with disabilities.

◾ Peer support service: A type of mental health care provided by people with experience with mental health issues.

◾ Mobile crisis services: Mental health providers respond to mental health emergencies like 911 intending to divert people from psychiatric hospitalization.

◾ Crisis stabilization services: These community settings serve as an alternative to emergency rooms for people experiencing mental health crises and aim to connect them to lasting care.

Utah investigation

The DOJ found Utah was “segregating” people with disabilities, a clear violation of the Americans with Disabilities Act.

The federal investigators found the state has a practice of funneling people with disabilities into programs in “warehouse-like” settings in isolation from people without disabilities. In such settings, they aren't allowed to choose how to spend their time and cannot partake in typical community activities, including shopping, exercising, or meeting friends.

At the warehouses, they perform repetitive tasks like sorting through recycling, shredding paper, or folding laundry, often for less than minimum wage, the report says. The programs tend to target young people with disabilities who are transitioning out of school.

The report found the wait for state vocational programs providing long-term job support for people with disabilities is over five years long.

The Utah investigation began in March 2021 and was published this week.

Joe Dougherty, a spokesperson for the state’s Department of Health and Human Services, issued a statement in response.

“While nobody likes hearing that their programs still have barriers for people to receive services, the state of Utah sees people with disabilities as critical citizens in our state and is committed to improving our service system,” he said. “The benefit is reciprocal, as people in the community benefit from the talents, perspectives and experiences of people with disabilities.”

Nebraska pushes back

The DOJ’s investigation in Nebraska focused on people with serious mental illness. It found the state was also funneling people into segregated day programs and living facilities, rather than programs aimed at promoting integration.

State law, according to the report, mandates there be enough community-based programs to ensure people with mental illness can work and live independently. But around 5,000 people live in nursing facilities, many exclusively for people with disabilities.

Nebraska’s Department of Health and Human Services pushed back against what it called “allegations.”

Spokesperson Jeff Powell touted the creation of Certified Community Behavioral Health Clinics where anyone can get mental health care; the development of better programs to help people get disability accommodations; and the fact that it already offered employment and supportive housing programs.

“Pointedly, the DOJ concedes that the programs desired by the federal government already exist in Nebraska today,” Powell said. “DHHS intends to resolve this matter as expeditiously as possible and in a manner consistent with law and the best interests of the people of Nebraska

[chronicallyillandcoping]

I had my implant replaced today and i have to say the nurse and doctor i saw were wonderful. They saw that im classed as a vulnerable patient and asked questions to make sure it was 100% my choice and i was okay (which it was and i am). I complain about the system and some of the people working in it a lot but genuinely for every asshole there is a lovely healthcare worker doing their best and im very thankful for that.

[fynneyseas]

THIRD MONTH IN A ROW I HAVE SPRAINED AN ANKLE I WOULD LIKE TO FILE A COMPLAINT.

[godlesslostsoul]

Something I’ll never be over is when I was at in-patient rehab after surgery someone put my pizza on top of my mashed potatoes and expected me to eat it

[neurotichousewife]

Finally did the food shop. Post 3 12 hour shifts is not the time to be carrying a rucksack full of tins up a hill.

I am now forcibly horizontal.

Wonder how long ima need to recover from this 🙄😭

[thedisablednaturalist]

So for at home care do you have to need like, nursing home level care? The nurse I talked to made it seem like that was the case which is why I thought it wasn't for me. I technically can bathe and dress myself but it's hard and I don't bathe as often as I should. I wear mostly overalls and sweaters. It varies though. I can't really do much during a flare up but I'm mostly ok outside of those. Cleaning is super difficult and usually causes a flare up and I rarely am able to clean. Cooking is also difficult as I can't stand that long and my mom doesn't allow chairs in the kitchen (the counters are too tall anyway). But the nurse said I needed to require help with bathing and dressing? Also I'm kind of nervous about having a complete stranger bathing me, as that's super intimate and I have sexual trauma related to that. Could my partner be my aid? He's pretty much the only one I'll let see me in that way.

[plague-of-insomnia]

Synchronize

Read on AO3

Pairing: Sebagni | Rating: M | Words: 5506

Summary: Agni, a home-care nurse, has had his share of difficult patients, but now he's up for his biggest challenge yet. Sebastian is young, seriously ill, and angry, but Agni is determined to help him anyway. Will the two be able to synchronize and move forward, or will Sebastian forever let his bitterness over his past trauma hold him back?

TW: This work will depict chronic illness and have medical procedures, as well as medical trauma and PTSD will be explored, but no major warnings.

~#~

Huge thanks to @apocalypticromantic666 for helping me with this and encouraging me to share it <3

Reblogs appreciated !

[drsanjeevdesai]

Head Surgery in Nashik : Dr. Sanjeev Desai

[quietly-collecting-spoons]

I’m tired of pediatric doctors oh my god

[mortuaryworm]

x

[treemaidengeek]

covid as a person with chronic pain & other chronic illness is wild, y'all.

me: I mean, yeah, I've got body aches, low-grade pressure headache, mild chest tightness, variably severe fatigue, & some digestive upset... but that's within my baseline, soooo ¯\_(ツ)_/¯

advice nurse: (Concerned) I'm putting in a high priority request for a paxlovid consult, here's specific emergency instructions if you get worse overnight. Do you have a humidifier? That can really help & it's something people don't think about as often.

me: yeah, we pulled it out of the closet yesterday

Partly I'm posting this out of a probably-misdirected sense of humor about spoonie life. Partly, as your daily reminder for fellow spoonies that our normal is not others' normal & we should explicitly take that into account when talking to medical practitioners.

good health, y'all ❤️🥄🥄🥄