#having autoimmune disease sucks

[doctorweebmd]

ok my OTHER reflection:

on the one hand its really frustrating to see the posts about docs and healthcare in general on here be so narrow-minded. bad experiences with certain providers have lead to a huge spread of misinformation and mistrust with the whole system. which can and HAS lead to people avoiding 'evil' doctors for perfectly treatable illnesses and dying from them (the vaccine bullshit, anyone?)

but on the other hand. it is TERRIFYING how some of these docs practice medicine. at times i think 'are you just burned out and don't give a shit or are you straight up just stupid?' and i work in critical care. where quite literally every case is life or death. even in the academic sector where there is supposedly a standard of excellence, some doctors i would not let touch my loved ones with a ten foot pole.

and that sucks. i know this is the no nuance piss on the poor webbed site but 'the medical system and people that work for it are fallible and aspects of it are morally questionable at best/unethical at worst' AND 'the field of medicine exists to help people first and foremost and mistrusting/avoiding it can be detrimental in the long run' can and DO co-exist

[arttsuka]

I think my body hates me

[mizugucci]

soooo i may have an autoimmune disease ?

[citrusandrottefruit]

Part 1 | Part 2 | Part 3

TW: Chronically ill Steve

In a world where Hanahaki is a rare autoimmune disease that is triggered by long periods of emotional distress. There is no cure, it lasts a lifetime and makes the person very susceptible to infections and can cause cardiopulmonary problems, organ lacerations, pulmonary fibrosis, liver fibrosis, esophageal varices, thrombosis, etc. In short, a disease with several complications.

Although these complications can be treated, Hanahaki itself only has palliative care and symptom control.

Steve's mother developed it when he was just 5 years old. Even though he was very young, he remembers seeing his mother coughing up blood, he remembers seeing an x-ray that showed something that looked very much like twisted roots in her chest. He remembers how she spent days in the hospital and how his father became much kinder after that. They took a trip to the coast at the time and his mother got better.

So she got worse and better and worse. She never seemed to get well enough, but they found a good treatment that made the roots dissolve and vomit them out. There was only one time when she got bad enough that the doctors had to open her chest and remove the roots.

His father was out of the country when it happened, and he didn't even have time to get back before Mrs. Harrington gave up on staying in Hawkins and decided to travel with her husband.

Steve stayed. At age 9, he wasn't sure who had triggered this disease in his mother: him or his father. But he knew he had to be a good boy, because once the disease was active, anything could make it worse.

So he never complained. Not when he started getting tired, not when his chest started hurting, not when he got a lump in his throat, not when he started having trouble breathing.

His parents only found out when he ended up in the hospital. So he started the same treatment as his mother, who stayed by his side for almost half a year before traveling again. His father stayed home more, too, and when he was away, he would call three days a week, but eventually he stopped caring, as he always did.

Growing up with Hanahaki was tough, but Steve managed. He took his medications religiously, keeping the disease at bay. When it took hold, Steve would take a cocktail of medications that made him weak and nauseous, but helped control the Hanahaki. When things got really bad, he would spend a night or two in the hospital, having whatever was compressing his chest sucked out.

He'd needed surgery to remove the worst of the tangle a few weeks after he'd found out about the Upside Down. Because he'd lost Tommy and Carol, because he was lonely, because things between him and Nancy were weird, because Jonathan might be better for her than Steve. Because his parents hadn't shown up, even though they knew he'd been in a fight and needed medical attention.

(He shouldn't have been surprised. His parents knew he was always in the hospital, of course they wouldn't notice this incident amidst a pile of medical bills. Steve realized they probably didn't even check what they were paying for. Like they only cared enough to keep him alive, nothing more.)

It was an easy surgery. His organs weren't collapsing, there wasn't much scar tissue, the medication had dissolved some of the roots… It was just the deepest parts that were still there. Steve could have lived with them, but he preferred to be safe than to risk letting them dig deeper into his chest.

They were only in the hospital for four days and Nancy showed up for two of them, even though Steve hadn't even told her the truth. He didn't even bother to make up some silly accident and a lacerated lung after he had already had surgery. Probably if she hadn't been so wrapped up in finding out what happened to Barbara and dealing with her own traumas, she would have realized the truth.

He didn't want her to know, but he was sad when she didn't ask him.

When Nancy told him their relationship was bullshit, he went home and inhaled so much scar-dissolving medicine (which Steve swore he could feel forming on his chest) that he passed out. He didn't regret it, because he woke up the next morning fine, if a little groggy, and convinced that maybe she didn't mean it.

After fighting the demodogs, he felt light, because he barely knew those kids, but he felt more liked than he had in a long time. So, okay, he thought he might die when Nancy left with Jonathan, but he was medicated and the kids… He had to protect them. Maybe his body knew that, maybe one feeling overrode the other, maybe that toxic air from the tunnels had killed the roots better than any treatment could have done. It didn't matter why, it just mattered that he hadn't needed surgery this time.

Lots of medication, frequent trips to the hospital, some aspirations, sure, but he was fine.

“If it weren’t for Hanahaki, you could get a sports scholarship,” the coach had said. That revelation played over and over in Steve’s mind for weeks, like the promise of a future he would never have. So instead of college, he went to Scoops Ahoy.

The first person to learn about the disease was Robin, weeks after the mall fire, when he ended up in the hospital again and needed another surgery. It was torture, he said, that was impossible to forget. And his parents still hadn’t come back. Billy and Hopper’s deaths… There was so much going on and he was so overwhelmed, but it wouldn’t happen again, so she didn’t need to worry. It was an exceptional situation.

After that, Robin was everything he never realized he needed. It was a little suffocating, but it felt so good to feel suffocated by love for the first time in his life.

He would never be completely well, but with Robin and the kids… It was easier. He was happy.

Eddie Munson, who had never interacted with him, caused some attacks when he became such a big part of Dustin, Lucas, and Mike's lives. Especially Dustin, who seemed different at times. Steve resented Eddie.

That all changed when they actually met, after all the Vecna ​​scare.

For a moment during those days, Steve thought he might end up getting involved with Nancy again, and he hated himself for it. Because it always felt like there was something unfinished between them, but he didn't want to get back together, because they were never good together and she just seemed confused. In '83, she had leaned on Jonathan and ended up with Steve for a miserable year, in '84 they only broke up after she and Jonathan were already together. In '85, she had been through the worst with Jonathan again, so it was okay, but in '86, with Steve being the only one around, she seemed torn between them again. Like Steve only mattered because the gates were open and Jonathan wasn't around.

They couldn’t be together again, so he got the closure he wanted, telling her about how he had dreamed of a future with her, but that wasn’t what he needed anymore.

It was like healing a little bit.

In addition to Nancy, he also thought a lot about Eddie Munson, who was great with the kids, funny, a little goofy, and much more human than he seemed when he walked around the cafeteria tables. Who walked beside him through literal hell, showered him with compliments, eased worries Steve hadn’t even told him he had, who encouraged him to pursue love.

Who could blame him for falling in love?

[walsuf]

hey I wanna make a character with narcolepsy and I've been doing my own research but I also felt like maybe asking someone who has it and stuff and since you made that comic headcannoning SM with it (really neat btw <3) I thought that you may be comfortable sharing some experience with it (as much as you feel comfortable ofc!) so I could better understand it so I may fit it into a character myself. OBVIOUSLY YOU DONT NEED TO ACCEPT IF YOU DONT WANT TO! this is coming out of nowhere and stuff so apologies if you feel uncomfortable!

[LONG POST] Yeah! Let's talk narcolepsy! Some things that might help (ft. Shadow Milk)

First and foremost, I want to say that my experience with narcolepsy is going to be very different from other people's, and I'm mostly just going to yap about my own details. Everyone experiences their symptoms in a unique way, kinda like how every bag of fruit snacks is different. You anticipate the same stuff inside (symptoms), but one bag will have all of the colors and another might have all orange ones.

I think my biggest advice here is to not dogpile all the symptoms, just focus on what heavily affects a character the most. Sometimes that's going to be nightmarish hallucinations, sometimes their sleep attacks; for Shadow Milk, I fixate a lot on cataplexy! (Weakness is a huge thing that I struggle with personally.) Regardless of additional symptoms, excessive daytime sleepiness will always be present :p

This one might be hard, but do something that you resonate with the most. Most people have experienced sleep paralysis at least once; a lot of people with narcolepsy get sleep paralysis very often, usually accompanied by visual/audio/tactile hallucinations. Then, it becomes a matter of changing the frequency and intensity rather than making something up.

When it comes to hallucinations, they can sometimes be horrifying (and are exacerbated by sickness, lack of sleep, and general unwellness). I find that a lot of people with nightmares and frightening hallucinations tend to have those in excess; I personally almost never get those. My hallucinations are usually very minor, like seeing the lights flicker when I close my eyes, or feeling like my body is surrounded by water or gently rocking back and forth. My most frequent one (and by far the most annoying) is that coming out of sleep I hear my alarm going off or my name being called. Neither of which are actually happening.

Excessive daytime sleepiness (EDS), like everything else, presents differently in everyone. Sleep attacks are only one aspect of it---which gives a person the nearly irresistible need to sleep for seconds to sometimes hours. Some people thug them out (often they can be resisted) because they find themselves losing way more time succumbing to it. Some people fall asleep very quickly, and can be in the middle of an important thing while doing so. I've personally fallen asleep mid-lecture while writing notes, and looking back at them is... interesting (there's a thing called "automatic behaviors" you might want to look into). Personally, I don't get sleep attacks often, but they are exhausting to deal with, and make me pretty much appear and act drunk without the fun part.

My normal experience with EDS is just a general level of sleepiness following me throughout the day, like that same feeling you get while working on an essay late in the night. It's manageable, but sucks. This isn't to say I never feel alert, there are good days and bad days, but most are in this sleepy middle ground that forces me to nap twice a day (noon and afternoon) lest I get all grouchy and my speech starts to slur.

From the outside perspective, sometimes people can guess that I'm having a sleep attack or just generally sleepy before I even know. I'll be told, "you sound tired," which is almost followed up with an, "...I do???" I crash within the next ten minutes almost every time.

Cataplexy is a symptom specific to N1 (which is actually an autoimmune disease, fun fact), and also happens to be what I struggle with frequently. It has strong emotional triggers (think anxiety, anger, surprise, laughter [doesn't have to be all of those, just pick a few]) and causes a degree of weakness. This can be anything from eye twitches and difficulty holding up the neck to full body collapses. For the most part, I feel it in my hands. When I laugh, I can't write or clench my hands any more. They become useless floppy limbs until a few minutes pass and they're back to normal. I am (unfortunately) a very giggly person. Personally, my slightest attacks make my head fall forward. My most severe one had me collapsing 6 times in the course of 15 minutes, hitting my head each time. Cataplexy attacks can cause subsequent attacks to come easier, and it's difficult to break the cycle. I avoid stairs for this reason.

If you've ever experienced morning weakness, or a few minutes in the morning where its slightly more difficult to hold things and get around, that's a lot like what minor cataplexy feels like, except condensed into a short, spontaneous episode. Oh! And it's often accompanied with blurred vision (look up ptosis) and speech difficulties as well!

I don't fear any of my symptoms because that's just how I experience the world. I've always felt weakness with laughter, so I thought that was always normal. I've been frequently sleepy and assumed that I was somehow lazier than everyone else. Now, I try to listen to my body. It takes a lot of effort to stop a conversation and go to sleep because my body needs it, and it sometimes sucks to forewarn my lab partners not to tell jokes around me. Sometimes I lay down in the middle of nowhere and have random people asking if I'm okay (hate this, I'm usually too weak to respond).

All in all, just try to make it a set of circumstances that someone else lives with rather than a set of symptoms that constantly put a character into crisis mode. People with narcolepsy don't need to be babied (I sincerely hope my comics don't come off that way because they're rooted in personal experience), they can manage their symptoms just fine on their own. Self-accommodations can come off as strange or funny (bringing a blanket everywhere, wearing sunglasses to manage minor cataplexy, wrist strap on the phone so as not to drop it), but they're there for a reason.

Sorry for the tangent, I've actually been on a heavy uptick educating myself. A good place to go for life experiences would be, of course, the narcolepsy subreddit. It's a good resource for people talk rather than medical jargon. If you need any examples for how to write or depict certain symptoms, though, I would be more than happy to do that on request! (I loove writing drabbles, and I know there's almost 0 narcolepsy fics, much less any written by people who care about accuracy. I'm begging to be asked here [will probably cookie run-ify everything though])

Thank you for reading if you got this far, and I hope this helped!

[justkidneying]

Why the Spleen Sucks

The spleen is a really shittily placed organ, making it prone to injury. This injury is usually severe and can lead to death if not properly managed. We're going to look at the function of the spleen, what happens when it is damaged, and how to write about.

Where is the spleen? It's in the upper left quadrant of the abdominal cavity, nestled right against the ribs (typically 9-11) at the midaxillary line. It's behind the stomach and is considered intraperitoneal. The main thing is that the spleen is very vulnerable. It is literally right up against the ribs without much protecting it. It's shaped like a little bean and is purple in humans. It is fed by the splenic artery, which comes off of the celiac trunk (which sticks off of the abdominal aorta).

What does the spleen do? Its main job is to filter out old and malformed red blood cells. It also holds immune cells. Certain diseases can cause the spleen to enlarge, including cirrhosis of the liver (it's connected to the hepatic portal system), sickle cell anemia (RBCs are stuck in it), and autoimmune disorders. The spleen also holds about 250 mL of RBCs in reserve in case you need them.

What happens when it is injured? The spleen can be ruptured and lacerated kinda easily. Blunt trauma to the ribs can cause it to rupture, and this is seen in contact sports and car accidents mostly. Because of those giant gaps between the ribs, it's also prone to injury from knife attacks. Gunshot wounds are another common cause, as well as broken ribs penetrating it (broken ribs are very sharp, like way sharper than you imagine). Rupture is more likely when someone has splenomegaly.

When the spleen is damaged, you're going to get a lot of intraperitoneal hemorrhaging. The spleen filters a lot of blood and has blood in it, so there's going to be a lot of blood in the abdomen (obviously). This will lead to distention, guarding (abs are tense), and hypovolemia. The left upper quadrant will be painful, and there can also be referred pain to the left shoulder (Kehr's sign).

If the patient has a small laceration, the symptoms aren't always as dramatic. Sometimes they'll just have low hemoglobin (which is on RBCs), maybe some thrombocytopenia (lots of platelets in the blood).

How do you fix this? If the injury is small and the patient is hemodynamically stable, they can usually be given a blood transfusion and the spleen can heal itself. Sometimes surgery is also performed to clamp a vessel or repair the outer layer of the spleen.

If the injury is major, then surgery will be performed. If the patient is less critical, they may go in and try to fix the problem. If it can't be fixed, they may do a splenectomy (remove the spleen). In a critical patient, they might forgo the nice pretty incision on the left side, and instead just split the patient down the middle. In these situations (in my experience), there isn't a lot of time to waste. One thing that we aren't going to waste time on is anesthesia, for example. This is with a lot of very critical surgeries, at least from what I have seen. Like the surgeon will start cutting as they are working on knocking out the patient, but usually they are in so much pain that they don't even register it.

If you remove the spleen, the patient is more at risk for infections, but with modern medicine and vaccinations, it's not as much of a big deal as it used to be. The patient will probably be fine.

Writing tips: (new section idea, hope you guys like it, lol) As with any injury, you have to make sure that you are giving them an acceptable mechanism of injury. With the spleen, this is either blunt trauma or penetration/laceration. Getting tackled, getting stabbed, getting shot, all great MOIs.

Second thing, present the appropriate signs and symptoms. A sign would be like bruising, hypotension, tachycardia, etc. A symptom would be LUQ pain, Kehr's sign, etc.

Next, figure out what you're going to do and where you're going to do it. In the field, there probably isn't much you can do. The most would probably be a laparotomy and clamping the splenic artery, but I mean, when I was an EMT, we were not doing this. There's a lot of stuff you can theoretically do, but never gets done. But I mean you can write it. If the patient makes it to the hospital, I think it would be more fun to do emergency surgery and just split them right down the middle. There's going to be a lot of blood in the greater omentum, very high stakes and exciting.

Anyways, hope you guys liked this, please let me know if I got anything wrong. I wrote this off of my personal experience and a few good textbooks, but there can always been mistakes in things.

[prettypinkporkchop]

EMBRY CALL X FEM READER

Warnings: mentions of body issues. Health issues. Hospital visit.

Autoimmune diseases plague your life. You are the only plus sized girl on the rez. You feel so down about yourself. Embry makes life worth living.

The beeping of the heart monitor next to you is starting to piss you off. You sigh and move the arm without the IV over your forehead. You feel Embry next to you grab your hand. "Just waiting for the results, baby." His voice is soft.

You started taking new medicines for the inflammation in your body. You haven't had any difference. In fact, it's worse. They had to do x-rays on your back, knees, and hands. They had you twisting in all angles! Your heart is palpitating, which because of your health problems, it scared them. They put you on an IV for a bit.

"Do you need anything? I can go to the vending machine." Embry offers. You move your arm and look at him. You smile and squeeze his hand. "No, baby. I'm sure once we get home, Emily will have food made." You giggle. You glance down at your stomach and think about how skinny Kim, Rachel, and Emily are. It hasn't bothered you too bad since being with Embry, but occasionally, it hits you. Especially when you are told you are going to be around them. You love them, and they love you, absolutely! It's just hard being the only plus sized girl.

The door opens, and the rheumatologist steps in with a clipboard. She pulls the small rolling chair toward you. She keeps her mask lifted up, but her eyes are telling. "Alright, y/n. The medicine was only making your heart race. It was causing some arithmetic issues. Your joints are about the same as last time. You are just in a flareup." She looks at you and then Embry. A flareup sucks but that means there's nothing WORSE and nothing new to worry about.

"I'm going to give you a list of treatments. You can choose one that you'd like to try. I will up your plaquinil, though. This go around, no prednisone." She starts writing stuff down.

The visit took a lot longer. Emily had called Embry to let him know that there's a dinner over there tomorrow with your favorite food. You feel bad when she does this every time you end up going to the hospital for something. She does this for everyone on their birthdays, but that's once a year. For you, it's a few times a year.

You walk inside your and Embrys house, your phone and charger in your hand. You yawn, tossing it on the couch. Embry reaches for your waist from behind. He pulls you into him and presses kisses on your shoulder. "Baby, you tired?" He asks. "Mhm." You nod. At the moment, your fingers are hurting, and you just want to sleep it off.

You guys wake up. Pick an outfit for the get-together!

Even though it's a dinner, you all usually spend the day there. You grab your purse and have painkillers and nausea pills on hand. "Embry! Come on!" You call out.

No answer.

You cock your head to the side and drop your purse on the couch. You walk back into the bedroom and see Embry dressed, but he is leaning over the bed with his face covered.

"Honey, no." You coo and sit next to him on the bed. You pull an arm away from his face to see he's teary-eyed. You pull him into your chest. He loves it when you do this. He calls them his pillows. "I just feel so.. useless? I feel so out of control of your situation. I want you to feel better. I don't want to make you feel bad. I just hope you know I'll always be here. I love you." He plants a loving kiss to the middle of your neck before moving up. You smile at him and caress his cheek. "I feel better today. Having you next to me makes the pain feel more tolerable. I feel like I can keep going. You do control the situation more than you think. I love you." You kiss his lips softly. He holds onto your wrist, rubbing his thumb over your hand. He kisses back so softly and slowly. You pull away and stand up. "Let's go eat and hang out with friends!" You pipe up.

You guys make it there and step inside. Emily and Sam are sharing a few kisses. Quil, Leah, and Seth are on the floor playing twister. "Damn it!" Leah hisses as Quil's arm makes her fall, causing everyone to fall. "Dude, that was nearly impossible! I'm a wolf, not a contortionist!" Quil yells out. Seth rubs the back of his neck because two strong bodies landed on him. "What does that even mean?" He side eyes Quil with a look of hurt.

Quil jumps up and hugs you and then Embry. "It's so good to see you y/n! I would say Embry, but he's up my ass." He laughs. Embry rolls his eyes. "Wolf duties, Quil. Don't make things awkward." You burst into laughter. Leah steps up to you with a huge smile. "I'm so glad you are okay! You feel okay today? No pain?" She wraps her arms around your neck, pulling you in. You giggle and pat her waist. "No pain today." You reply. She pulls back to hug Embry. You turn to Seth, who looks worried and has his hands in his pockets. "Seth Clearwater, what is wrong?" You ask amusingly and then give him a hug. "I'm scared for you and Embry." He sniffles and wraps his arms around you. "Hey, kid. We're okay. You guys will always kick vamp ass and I'll kick the disease ass too." You giggle.

"Surprise!!!!" Kim pops up and engulfs you in a hug. You hug her back and laugh. "Kim!" You call out. She pulls back and checks out your fit. "Goddamn! Beautiful!" She gushes. "Hey, you're the pretty one." You argue, internally feeling self-conscious and envy. She looks at you, her face contorted with 'come on, now'. "Seriously, Kim! I'd love to be skinny." She backs away and points at her body. "Y/n, JARED HAS NOTHING TO SQUEEZE!" She laughs. "I am beautiful, but you are too." She sits back down next to you. "Plus, everyone talks about how Embry calls your boobs his pillows." You both laugh.

The group of your friends in the kitchen pull up in the living room with you two. Embry stands behind the couch behind you and rubs your shoulders. You look up at his pretty face and pucker your lips. He leans down and pecks you. Quil puts Embry in a chokehold and pulls him away from you. You roll your eyes, and all the imprints sigh. "Here we go.." Emily giggles.

After your whole get-together, you and Embry get back home. You lay on the bed with your shoes still on. Your back is hurting so bad. You are trying not to cry. You roll onto your side. Embry comes up and takes off your shoes, kissing your ankles. "Baby, you need anything?" You shrug, unable to speak at the moment.

"I'm gonna get you comfortable." He unbuttons your pants and pulls them off effortlessly, as he knows all your curves perfectly and has done this many times. He kisses your lower back. "I'll get you some heat." He leaves. You roll onto your back and sigh. He comes back in with the heating pad. He plugs it into the wall and turns it on. "Lift up, baby." He says. You lift as high as you can, and he places it down. You flop down, and the heat instantly feels good. Embry kisses your forehead. "I love you." He smiles. You smile back at him and pat the bed next to you. "I got you." He walks over to his side and lays next to you. "Together." He says, grabbing a hold of your hand.

[pokophobia]

imagine being 18 and needing a bunch of tests done because you might have an autoimmune disease 💀 #flop anyway you can support me here! any help is appreciated, prices are listed there, any questions you have send em here!: gilbertcocteaus (discord)

(i also draw nsfw/suggestive art! as long as you're over 18 i can draw your faves kissing sloppy style)

more details/a rant below the cut, i had to cut these off twitter due to the character limit and because people can't read a thread to save their lives so ... yeah lmao

those who know me know two things about me:

- i am very normal about my favorite characters

- i have weird health issues that went undiagnosed during my childhood and teen years due to what's essentially neglect

i can't walk for long periods of time, and it's gotten harder recently, i have stomach issues, difficulty breathing, joint pain, i got the whole pack! and no diagnosis other than really bad allergies.

and i've TRIED to get my family to get me to a doctor, a good one, and get me tests and whatnot, but now i am 18 and can earn my own money so i am doing just that. i fear i can't even buy shit that makes me happy now because i am busy trying to take care of my rabbit and myself, both very expensive. i am officially stopping my mental health treatment so i can save up for some tests i have to get (a tomography and blood tests, and if i can get a hold of a cardiologist i might have to get more)

and that's not counting the possibility of treatment. which i might not be able to afford anyway but we'll see! i wanna work a formal job eventually, one that gives me constant income, because commissions are unreliable no matter how HARD i work, trust me. it's never enough. lmao.

it sucks that i have to worry about this at the ripe age of 18 when i should be at the club but whatever if i have to draw until my hands fall off then so be it because i am tired of being stuck at home with barely any energy to even enjoy myself 💀 like even if i went out to have fun it'd be annoying as fuck because i'd be in pain shortly after, so why even bother lmao

i am just very annoyed man i should be buying stupid yaoi merch and going to the club and having hashtag fun BUT NO!!!! I HAVE TO WORK!!!! IT SUCKS!!!!

[hellyeahsickaf]

"My body hates me" "Ugh I hate my lousy ass body always holding me back" "I'd hang out but my stupid body's too fucked up to let me" I know it feels like your body's working against you but it isn't- it's doing its best to protect you and keep you alive

If your chronic illness is post-viral and/or autoimmune your body's doing everything it can to fight a constant battle against what it believes to be a threat. Sometimes it develops because an infectious disease has interfered with the functions your body carries out. And some illnesses develop symptomatically as a survival response because your cortisol production indicates that constant fight or flight isn't working so it forces a freeze response. If you're in pain, fatigued, have brain fog, etc, you can't exert yourself and are forced to conserve your energy. That way you don't overdo things and possibly compromise your survival. It feels like a lousy survival response, it really sucks, but it's still an indicator that your body's doing its best

You can hate your symptoms and vent about how much they suck, I know they truly suck balls and some days I just wanna scream and break things while I'm in bed struggling to keep my eyes open. Just don't forget that your body doesn't "hate" you and you should treat it kindly. Many symptoms like pain are there to tell your brain something's threatening it- even if your nerves are misinterpreting sensations like strong temperatures and sending pain signals to your brain. Billions of little cells and microorganisms are working 24/7 to keep you going. Those little guys carry out so many functions and none of them are for the sole purpose of making your life harder. It always comes back to your body trying to survive

[basilsnotemo]

Vent ig

I’m so fucking cold man. I’m so sick of being sick and having a fever every goddamn day and I’m tired of my knee hurting, and the rest of my leg hurting because of it. I’m so tired of this.

The worst part of it all is that I don’t know why or what’s causing it. It used to be that I would get flare ups whenever o got really sick and like one of the random autoimmune diseases that’s part of my main autoimmune disease would act up.

I don’t know why my arthritis has chosen now to act up, I haven’t dealt with this since I was 5 years old and it’s really frustrating because I haven’t been sick, I haven’t hurt my knee or anything like that, I wish I did, because then it would be over with by now at this point.

Chronic illness sucks. I’ve dealt with it my whole life pretty much I got diagnosed with UCTD when I was 5 years old. And I’ve been pretty lucky, it’s been managed pretty well up until the last few years which is odd because nothing has changed and it’s so frustrating.

Anyway sorry to get all deep and personal on yall, I just needed to get it off my chest and it’s easier to talk to strangers on the internet then it is to talk to people in real life sometimes.

[chronically-ouch]

Welcome to the Premium Autoimmune Package

Hi. I’m not new to being sick, but I’m very new to being taken seriously. That only happened because my body is currently collapsing fast enough that doctors couldn’t look away anymore.

I live with overlapping autoimmune diseases, but recently I got upgraded to the “CNS involvement” tier. Think brain inflammation, spinal pressure, hallucinations, cognitive fog, and one healing spinal fracture I didn’t even realize I had. I thought it was just my usual back pain. Turns out it was… a broken bone.

I’ve been hospitalized twice in the last month. A spinal tap showed my brain pressure was way too high, 32 cmH₂O, where normal is typically between 10 and 20. My spinal fluid was full of immune cells , 40% of them, when 0–5% is normal. My MRI has white matter lesions. It’s not MS. It likely neuropsychiatric lupus. It might be a weird intersection of multiple things. No one’s totally sure yet.

What I do know is I’m on IVIG now, possibly headed for a brain shunt, and trying to stay out of the hospital. Also, I’m trans and had to pause testosterone because of clot risks from treatment. No, there’s no workaround. Yes, it sucks.

This blog is my space to document what it’s like to be visibly declining after years of being invisibly sick. No pity required. Just here to tell the truth about what it’s like to have the Premium Autoimmune Package, full access unlocked.

Current Working diagnoses:

• Neuropsychiatric Lupus (NPSLE)

• Myasthenia Gravis

• Psoriatic Arthritis

• Intracranial Hypertension

• Ehlers-Danlos Syndrome

[foldingfittedsheets]

I saw your post and I'm so sorry. Elimination diets suck.

Can I ask how/where you buy the French flour?? 👀👀👀 as an autoimmune disease haver myself, this could be incredibly helpful for me. Thank you and good luck on your GF month 💛

I was gonna try through here this time. I’ve gotten a different brand through Amazon and really liked it but would like to avoid going through Amazon.

Only issue is they talk about needing to fridge the bag to prevent flour moths so I guess I need to look into that… didn’t have that problem with the other import I used.

[chronicallyonlinewriter]

This was a weird experience, so I just wanted to write it out somewhere.

I got tattooed yesterday. That in itself is not weird; I love tattoos, have many, and am no stranger to long sessions and the pain that comes with them. This tattoo was on a whole other level, though. We blasted my entire elbow with color, to connect two larger pieces making up my sleeve. If you have never gotten your elbow tattooed, 0/10, terrible experience, do not recommend. But whatever, beauty is pain, love the design, and the tattoo artist is a friend of mine (who is also related to me by marriage, via my spouse). We spent a good four hours just torturing me, then we finished, and everything was fine. It's normal to feel shaky after multi-hour sessions, so I didn't think much about being kind of out of sorts. After we finished I even walked to the upstairs of the shop to chat with the two girls working up there, then walked back downstairs, and then my artist had me stand still in her room so she could take some photos of the tattoo.

I remember standing there and thinking, "Oh, I feel weird. Oh, I feel really weird - oh, I might actually be about to pass out, I should say something to her." And then I woke up. I opened my eyes, and was staring at the ceiling. I didn't know where I was, I did not recognize my friend (who was standing over me telling me, "It's okay! You're okay! But you passed out and you hit your head - don't move!") but for some reason my brain was convinced that I was in a restaurant, being attended to by a stranger. And my brain also convinced me that this was real life: I was in an unfamiliar restaurant, with no idea how I got there. In my head, my actual, real life was only a dream, and it was one I was waking up from. Everything I had experienced in my life - my family, my job, my marriage, my friend, my hobbies, my goals and my interests - never actually happened to me, and therefore I could never go back to those things and those people that I loved. And in that moment I was struck with a terror so momentous, and a grief that was so profound, that it was like I couldn't breathe. It was absolutely something that altered me as a human being. Slowly, it did all come back. Everything eventually clicked - I remembered where I was, who my friend was, I recognized the other girls who ran downstairs to help me out. I was very shaky, but I was okay. I vaguely remember sitting on the floor while my friend called my husband to come get me - and then it was like my body caught up to the grief that my mind had conjured, and then I started sobbing, like some weird delayed reaction (which wasn't embarrassing at all). My husband came and got me, brought me home, made me dinner, and eventually we went to bed. It's strange, that those lingering feelings of grief are still with me today. And I feel very odd in general (I have an autoimmune disease that always flares up after I get a tattoo, and I have to think that at least some of this is because of that.) So yeah. Tl;dr: elbow tattoos fucking suck, and I passed out in a tattoo studio and gave myself an existential crisis, which was not very punk-rock, black-clad, tattooed maneater of me.

[maemaybe]

My autoimmune disease causes brain fog and the brain fog leaves me struggling to find words. It just keeps getting worse. It feels especially painful as I've always been a very verbose person. Now I struggle to find very simple words. Sometimes I struggle to find words that I used just minutes ago.

Today, I was chatting with a woman and I noticed that she was struggling with a very similar impairment. I noticed how similar her speech pattern was to my own, but not in a judgemental way. I was actually thinking, "Well I guess it's not that bad, this lady is struggling as bad as I am and she's probably about my age. Maybe it's just part of getting older."

And then she made a comment about having "MS brain" and hearing that shocked me so much that I became so scatter-brained that I messed up what I was doing, tripped over my words, and embarrassed myself. I ended up saying, "Actually I've got some brain fog today too. RA." And we briefly commiserated about how much it sucks to have an autoimmune disease.

I sat there for a few minutes afterwards just thinking about what a struggle it is for me to accept that this really is a disability that makes my life harder.

The last couple of days have been hard. I've been forced to wrap a couple of my joints in support tape, which means I'm more visibly disabled than typical. I'm noticing the way people react to me and it's uncomfortable.

[stargirlie-sharon]

autoimmune disease/chronic illness talk:

autoimmune sucks, :( my diet is limited and i hate it man. can't eat gluten, dairy, red meat, shellfish, like wow my body is a real asshole to itself. like once i was born i was automatically destined to have a body that hates the preciously mentioned stuff and if i have too much of it my psoriasis kicks down the door and comes to torture my body and my mental state (but THANK GOD i'm not experiencing that rn and am in remission and asymptomatic of psoraisis)

and a ton of the foods i like are all made from things i can't eat because if i do give in and eat stuff with gluten, (however if i do eat a little then it seems to be fine... but still) it's literal torture and the foods i love are restricted to me because of my fucking condition

even when i want to find a snack in the pantry every one of them that i like contains something i can't eat

i know that it's better for me to stick to not eating it but i don't like it. i wanna go devour all the things i love regardless if they can trigger my disease, but then again if i do my condition will flare up and i'll go back to being in both physical and mental pain, and i never wanna go back to that hellhole again it's traumatizing

i wanna have a normal immune system dammit >:(

[windienine]

soulsov prelude is such a fucking darkly hilarious story from alma's perspective like

okay so you left the big city and moved out to the sticks when you were in your thirties to run a bed and breakfast, because a new industry popped up and is keeping your business fresh and nourished. you have lots of friends and regulars, including this bright-eyed archaeology student who you're pretty sure is getting scammed by his boss. you become fast friends with him and determine that this guy is decently bright and really kind but he's the biggest mark on the planet for people who want to take advantage of good folks.

he just thinks he can fix people. you worry about what his relationships might end up like.

twenty years later and business fucking sucks. the industry that fueled tourism to your town petered out not long after the weird student left and you're going bankrupt by keeping your doors open, usually to disabled and sick folks who don't have the funds to drop on a room. you start to hate your life, but you don't hate the town, so you keep your stupid b&b in zombified business and your cooking and cleaning abilities start to suffer for your depression. nobody's left in this shithole but you and your dozen half-dead regulars. no repairs, no utilities, no cable.

and then, a familiar face: it's the weirdly scammable student again. he's got to be like forty now and he's giving you the same kind smile you remember, but something is wrong; something clearly happened to this guy. so you offer him a room and board with no fee and he's like, no, i'm going to help you maintain the b&b.

what.

like this is still in-character for him, but what. why is he even back here? last you heard he runs his own flower shop in the big city. so you ask, and he finally says that it's because he's a single father and his daughter is dead.

sick, rather -- extremely sick, in a coma, on life support -- but the way you hear him talk about it it's like it's like an extended courtesy of a hospice. it's cancer, or heart disease, or something autoimmune. there's no real cure. so he's here to research one!

you see in his eyes that he doesn't think he'll find anything.

okay.

so he lives at the b&b with you in bugfuck nowhere for the next few months and talks to you lots and makes things easier on you, sweeps up and does the dishes and grows a bunch of herbs in the hallways that liven up the place a little. (him and his flowers.) and you kind of realize that you're both here to die very slowly. you because you're old now and you made bad choices that seemed like good choices and invested years and years in a dead industry in a dead town in a dead part of the world, him because he lost everything worth living for. and you and your b&b survive a little longer than either of you might otherwise.

and one day this blonde girl nearly falls through the entrance, looking half-dead. neither of you recognize her, but as soon as she opens her mouth, you smell scam on her. or cult, or grift, or scheme, or something. she has big blue eyes and a wavering voice and the worst stage cough you've heard in your life and you look at your friend and try to psychically beam the concept of how bad an idea it is to go to the woods with her alone like she's asking. your friend has bad survival instincts and an overflowing sense of generosity that you're trying to learn how to suppress in yourself and he is going to get turbomugged out there. but he has to, on the off chance that she's putting on this act because she's too scared to admit what she really needs help with (abuse? finances? living situation?), and you're not his fucking mom so you're like okay fine don't die.

and he doesn't come back.

and he doesn't come back.

and the cops come back in the morning with his unconscious body and he has a bullet hole in his shoulder. mugged! what did you tell him?? and he's dazed for most of a day and when he wakes up after you've patched him up you lay the fuck into him. why do you let yourself be scammed like this. you used to stand up to people when you were younger. what changed? he should be at home tending flowers.

and he looks at you, when you mention that his kid might get better.

and you realize all at once that his grief overrides all common sense and he's not really acting with the urge to protect himself at all anymore, from anyone. he wants to make something better for someone. anyone.

and that's not kindness. that's stupid. and you tell him to rest and recuperate and hope he listens, tells him he'll have to talk to the police (who you both hate) about the scammer girl, who vanished without a trace.

and then, not half an hour later, you realize your fucking vehicle is missing from your garage. in perhaps the first dickhead move you've seen from the man (cool that he took your words seriously), he took your keys. he took your fucking keys and booked it.

you feel something like the other shoe dropping in your gut, realizing that he left to find the girl who shot him point blank and you're probably never going to see him again. that was that. epithet: died as he lived. you sit for a long time.

and you hear the loudest fucking noise of your life somewhere overhead in the distance. you look up. something is on fire. the clouds are haloed in the kind of light they talk about in the holy books you don't believe in. you feel the hairs on the back of your neck stand up and static fill the air and you think that this is what they were talking about in regards to god striking fear into the hearts of men.

something bright stands up above the horizon.

it's her ass. again. of course it is.

somehow you just kind of know that whatever freakshow is occurring here is your friend's fault. you're correct in that assessment. but you also get that weird, uncharacteristic, shoot-the-moon, one-in-a-million feeling that you'll definitely see him again.

he can probably keep the keys, if you do.