#tw auto-immune illness

[lostlittle-star]

My psoriasis story

I have been thinking for a while to write something down about this. To give it a place, because let's be honest, it fucking sucks and it's ugly.

So here is my struggle, my journey:

The journey until now has been one with a lot of doctors appointments just to figure out what was wrong.

My story started last year when I noticed some sort of rash on my legs. In the beginning it were 3 spots, a couple of days later it were 10 and the next week they appeared on my other leg too, so first appointment at my general practitioner.

First diagnosis: folliculitis (infection/inflammation hair follicles). Remedy: washing myself with disinfectant soap and treat the spots with an antibacterial ointment. It should be getting better at the end of the week.

Wrong. So second appointment.

Second diagnosis: scabies. Fuck! Seriously? Me?! This made me feel ashamed, dirty. I immediately went to the pharmacy and hopped into the shower. Still washing myself with the disinfectant soap, which is making my skin extremely dry, and afterwards the prescribed ointment. New pj's and fresh sheets on the bed, every day. Again, it should be getting better within the week.

Wrong.

Little note, I had a lot of doubts with this diagnosis, I have also a medical background from my time in college (not anymore though). But who am I to go up against the doctor?

The general practitioner is still convinced with the diagnosis. So second week of extreme measurements, fresh clothes and sheets every day, still showering with the disinfectant soap and treatment with the ointment. It should be visibly getting better in days. If it wouldn't, this time I could call.

Well guess what? It was still not getting better. I had now patches on my legs, arms, torso and back. And the diagnosis made it all itch even move. So on Friday I called my general practitioner for the update and miraculously got an appointment with a dermatologist the very next Monday (normally it takes at least half a year to get one).

The appointment with the dermatologist was finally there and I finally got answers. He first checked my fingers for little burrows and smiled a little immediately. Well, I got wrongly diagnosed for four weeks. Finally the right answer I had been waiting for.

The definitive diagnosis: guttate psoriasis. A rare form of psoriasis, less invasive, probably caused by a throat infection. And of course always diagnosed late. Treatment? The same as the typical psoriasis, a corticosteroid foam.

After four weeks, treatment finally started. Since it started so late, the patches on my legs will need a lot more time to heal.

A little flash forward. The most recent patches had disappeared easily after 2 weeks of treatment, it has been 4 months since since the first signs. But those on my legs had healed a lot, the discoloration was still going to be visible for months. Because it needs time, too much time for my liking. It is good it was winter when all this started. At the moment I am writing this, it is already spring and the new batch of patches on my legs are still very visible. And I am struggling with it.

I don't think the dermatologist keep the mental factor in mind. After the diagnosis it's all about the treatment, where and how to apply. For someone who has always been bullied, this is one other blow to the self-esteem.

There are days when it easy, apply lotion in the morning and put on some long trousers and I ignore it for the rest of the day. But there are so, so many days I find it hard to look at my body. And I onow shouldn't be complaining, since it's not as invasive as the typical psoriasis. But I can't help it to struggle with my self image. Will I be able to wear dresses or shorts this summer? Is it going to disappear? Will it come back if all the spots are away?

So, will this story have and end? Will it be like a thread through my life?

This auto-immune illness is one I will have to live with and honestly I get it why no one talks about it and hides it. We all shouldn't.

[skullingwaydraws]

A recent illustration I made to submit to a show about disability

I wanted to depict pain and work. It wasn't selected, but I still wanted to share for any who relate 💕

[hotgrrrlgross]

had an appointment today

CW// vent post lols and honestly as much as i want to be hopeful and look forwards having a doctor turn to you, you desperately needing help and them going "well, what do you want to do about this?" I DUNNO??? IMPROVE MY QUALITY OF LIFE??? A LITTLE??? what else am i gonna say?? "oh yeah i actually plan on not getting better i want to get so bad i die thanks!" like....yeah please make me do all the decision making here. i am turning to *you* for help. please help me?? give me mobility aids??? a physical therapist?? pain management???? something??? you looked at my list of symptoms and went "well that's not good" and then ask *me*??? what i wanna do?? please. just help me. just fucking help me that's what i want.

[waywardvictorianconfessions]

Implying her auto-immune disorder isn’t real is kinda fucked up, y’all. She’s posted about health issues and surgeries for years. I know she lies about other things, but the countless hospital pictures, surgeries, and trouble with eating seems like plenty of proof for me. As someone with an invisible chronic illness that gives me digestion issues, I worry that people see me and think I’m lying too. Invisible illnesses are real.

[void-tiger]

Benefit of thunder thighs:

Sure they destroy clothes “intended for curves, anyway” (that cost like. $70 average. Esp for Tall&Otherwise Scrawny.) buuuut hey. They give me an area to jab myself with needles that isn’t my belly

…I really don’t wanna jab myself in the stomach thanks. Nevermind that I only store any fat to cushion my organs vs “count the ribs” or “oh wait…that’s inflammation. Whoops” when the stars align.

[sashi-ya]

Hello! I'm curious about something if you want to talk abou it. Could you tell me more about lupus? How did you get it and which symptoms do you have? How you get through your days when you have them? You stay at home?

Sorry for the many questions but I don't know physically nobody that has it and I'm curious. Hope you are well!

Hello hello!! of course! It's always a good moment to spread the word and inform about certain illnesses, so thank you for asking!

TW: This is MY personal experience and my medical knowledge (rn nurse uni degree, med school student). However if you have the following symptoms DO NOT assume you have the disease, BUT VISIT YOUR DOCTOR. And, if your symptoms get underestimated don't be afraid to visit others. YOUR SYMPTOMS ARE VALID, YOU ARE NOT LAZY, YOU HAVE A REAL PROBLEM.

What is Lupus or SLE? So, basically Systemic Lupus Erythematosus (aka Lupus) is what we know as an AUTOIMMUNE DISEASE. What it means is that basically your own immune system attacks the body's tissues because it recognizes your own body parts as "threats" (like it would consider a virus or a bacteria, like something coming from the outside to hurt your insides). When your tissues get attack, that means your organs and body parts will suffer damage. And, unfortunately being "systemic" means that it can attack any tissue, such as skin, kidneys, brain, eyes, lungs, etc.

How did I get Lupus? I have no idea, as a patient nor as a future doctor or as a rn nurse. This little shit comes with you since the day you are born inside your dna, however not always it manifests. Some do not have symptoms until one day, others have symptoms and signs all throughout the years (me) and never get diagnosed until it becomes REALLY visible (let me make a little note here: even if the majority of lupus patients are female, we often get misdiagnosed because of the misogynist look that the medical field still has. Women often get called "lazy" or "dramatic", until you have eye or kidney damage like me).

Symptoms So, it varies. Lupus is not just SLE. There are a lot of different types (4), from cutaneous, to systemic, to neonatal, and even there is another type that can be induced by certain medication (this is one of the reasons why we should never auto medicate).

Important note: all autoimmune disease gets triggered, awakened, crazy when we are under high stressful situations. The outburst of the symptoms are often (if not always) triggered by a stressful situation and these are called "LUPUS FLARE UPS". So, in my case some symptoms are:

fever with no apparent reason (while being totally "healthy". This I had it since I was a kid, no fucking doctor EVER give a fuck about it. My mother got told that "I was probably having a tooth infection" spoiler: no, i didn't).

skin rash and what looks like "eczema". Sometimes over the bridge of my nose and cheeks, this is called "malar erythema" or "butterfly rash" and it looks like you have a red butterfly on your face.

joints pain / muscle pain (it hurts like a bitch, sometimes you can even move your legs) and muscle weakness. I had my right knee cartilages degenerated, also because of Lupus.

Shaky hands (and sometimes I can't even open a bottle of water cause I don't have muscle strength).

cognitive problems (i can't remember shit, sometimes I can't study, anxiety attacks, etc)

Last year during this month I got something called "ANTERIOR UVEITIS" for which I am still paying the consequences. My right eye got super inflamed and red and some parts didn't receive enough blood (like a stroke) and I lost some % of my visual capacity.

Renal problems (p a i n, stones, etc)

weakness, tiredness, sleepiness (I also have hypothyroidism, which causes me to have 0 energy so I live off energy drinks: DO NOT DO THIS)

A lot of sadness and depression.

What do I do when these symptoms hit? unfortunately there is no much you could do. I learned that nobody in the "adult world" gives a fuck about you being sick and nobody will wait for you. University don't care. Jobs either. So, what do I do? I try my best and work/study as "i can". Sometimes I just can't stand from bed, so I am lucky (and at the same I am not) to live with my family who often helps me to even go to the bathroom. I try to do stuff until I can't stand in two feet and that's when I call my doctor to ask for a permission to rest (Argentina is a country where is pretty difficult to leave your parent's house earlier like the rest, we are kinda poor and rent is EXPENSIVE)

I hope I have answered some of your doubts, and I am very very open to answer more if any wants to ask! 💖

[imreallynotokaybutimtrying]

so, im not in a good place rn.

tw for various things, just keep scrolling past if you're not great yourself, this is a vent and update, just do what y'all need

uhm so we start with uni. im in my first semester of education and i want to be positive bc ive wanted to be here for so long but im falling behind and it's awful. i got myself appts to hopefully sort something out but i need help and need to get an adhd diagnosis so i can get proper help in that space

then medically im falling apart. recently found out im hypothyroid, have pots and reynauds say investigating auto immune problems and whatnot but it's getting worse and standing for ten minutes is enough to make my heart make my entire body end up in heavy pain. which sucks. but uhm- gotta wait like two weeks for that to go through properly

and then we have the fact my psychologist just left. technically ive only had counselling until her but ive had five through one organisation, two at school, and now counting beyond for this group. if there's a way to hurt a bpd patient its leaving when you're the only person left to give counselling or dbt

and getting put on meds soon for mood stabilising and anxiety/depression as well as anti psychotics, soooo will be interesting with side effects as someone who already has heart issues (teehee)

and then my mental health is just. so far gone. im trying to hang in for these appointments but if they don't go well ill either be hospitalised or dead at this rate. i don't want to die but i don't want to live either

so yeah, idk what else to say, just. bleh

[chronicallyfckd]

It baffles me every time when I remember how the people around me mock me all the time for my neurodivergency and my illnesses alike, despite knowing I have/suffer from them. How can neurotypicals and abled people be so cruel all the time? To people they’re supposed to love unconditionally, no less. To people they mean a lot to. It just really sucks to never be able to say something about the things that bother you, because there is a 99% chance you’ll get a nasty comment in response, rather than compassion.

[stargazer-sims]

Journal Entry #14

Yuri

Hello, everyone! Greetings from Kiyomatsu!

I know it's been a while since either of us recorded anything in our journal, but it's been a very busy ten days. There's been a lot to do.

I'm not quite sure how we managed it, but we moved out of the old house exactly on the day we'd aimed for. It was before the end of the month, and Mrs. Ito seemed more than a bit surprised when I phoned her and asked her to come over and collect the keys.

We're officially moved into our new house now. We've been here for three days, and we're settling in nicely. It really is my dream home. Before this, it was only in my wildest imaginings that I could've seen myself in a house like this. Sometimes, I catch myself marvelling at the fact we're here.

Victor's mom is still with us, and from start to finish, she's been a true blessing throughout the entire dramatic story of our move. She'll be leaving at the end of the week, but she said she'd like to come back to stay with us again for a while in the winter.

When she first arrived, if anyone had asked me if I'd be okay with that, I would've told them a resounding no, but I've gotten closer to her over the course of her visit. We need to make a bit more progress before we'll be entirely comfortable with each other, but I think we understand one another better than we did when she arrived, and now I'm looking forward to having her come back so we can continue building our friendship.

Oh, I nearly forgot! we promised you the rest of the house tour last time, didn't we? Let's do that first, and then I'll tell you our other news.

Here's one of my favourite features. Our mountain has several natural hot springs, but the one on Uncle Kaz's property may be one of the very few that has a private home built next to it. The other one here in Kiyomatsu, for example, is on the property of a public bath house. It's much bigger than this one, so it makes sense that someone several generations ago had the idea to build a community gathering place next to it.

We really like not having to share ours. Victor and I both love it, and we've been in it for a short time each day. Dr. Nelson isn't such a fan, though. She tried it once, and then declared that it was, "not appropriate to be sitting around half-naked outdoors in the middle of winter." It's still summer, but neither of us bothered to point that out to her. I guess it's easy to forget what season it is when one is surrounded by snow all the time.

In any case, we don't mind if she doesn't want to join us. If she isn't watching us, we're free to cuddle in there if we want to, and maybe a little something else. I really don't like letting Victor kiss me in front of his mother. She tends to look for longer than is polite, in my opinion.

I could go on about the hot spring, but I'd better not. Let me get around to the areas of the house Victor hasn't already told you about. I wanted to get my work space set up before I shared that part of the house with all of you, and there was no bed in my room the last time, so it might've been premature to show it like that.

Here's my room. I'm in love with how big and bright it is. I'm very comfortable in it, and I may not want to sleep in Victor's room as much now that I've got a beautiful space like this. I'd rather see if I can convince him that he needs to be in here more often with me instead.

Another thing that makes me happy about my room is that I don't have to work in it. Separating work life and home life is challenging if you don't know whether you're working in your bedroom or sleeping in your office.

This is my cute little dedicated work corner, so now I can leave work out of my bedroom, as it should be. It's got plenty of natural light, and it's upstairs, so it's out of the way of the higher-activity areas of the house.

i think Victor may have mentioned our formal dining room last time, but I'm not sure if he showed you what it looks like. On our first official day as occupants of the house, we decided to celebrate by having dinner in there, and it was so lovely that I kind of want to eat in the dining room every day now.

Victor made a stew with black beans and tofu and big pieces of different vegetables, and he made some sort of chicken dish for himself and his mother. I baked a vanilla cream cake for dessert.

I put on some music, and we all sat down at our cozy kotatsu —our low, heated dining table — to enjoy the occasion and each other's company. Everything smelled so good. I couldn't even remember the last time I'd been that enticed by the scent of something edible, and I could hardly wait to try the stew.

The only real difficulty of the evening arose when I let Dr. Nelson fill my bowl for me. When I say filled, I mean there were barely two or three centimeters of the inner rim of the bowl visible.

I stared at it for a second or two. I’d never have put that much food in a bowl for myself, and I knew Victor never would, either. He'd never have expected me to be comfortable with that much in front of me.

Victor clearly noticed I was having this small dilemma. Across the table from me, I heard him say softly, "Yuri," and when I looked up at him, he silently formed the words, "You okay?"

Was I? Doing my best to tell myself that a too-full bowl was a silly reason to panic, I nodded. Victor smiled.

Unluckily for me, Dr. Nelson must not have caught this exchange, because the next thing I heard was, "Yuri, sweetie, at least take one bite before you start making that face."

"I'm not making a face," I said.

"It's fine, Mom," Victor said. "He always makes that face."

"It's not very complimentary to your cooking."

"Mom, you don’t—" Victor began, but then seemed to think better of whatever he’d been about to say. He sighed and tried again with, "You know what usually works better than criticism? Encouragement.”

“I wasn’t trying to be critical,” Dr. Nelson said. “It’s just that you put a lot of effort into this, and—“

“Mom. I said it’s fine.”

“I really want to eat it,” I said, embarrassed. “I didn't know I was making a face."

"It's okay," Victor said. "I know you really want to, and I know you can. You've been doing so good with your eating lately. I haven't had to coax you or nag you at all this last couple weeks."

"I don't remember you ever nagging me," I said.

"Well, whatever it is I do when I'm pleading with you not to let yourself slowly starve, then.”

“When you make your mealtime face, you mean?”

“Do I make a particular face?”

“Yes,” I said. “It’s that dramatic sad face. The same one you make when it rains and you can’t go on the trails.”

Abruptly, Victor snorted with laughter. “Yuri Okamoto, you’re making that up! I do not look all dramatic when I can’t snowboard.” Then, pausing with his chopsticks halfway to his mouth, “I don’t, do I?”

At that point, Dr. Nelson was laughing too. “Oh, Victor… I’m afraid you do, sweetie. I should know. I’ve seen that one a lot more than Yuri has.”

And, just like that, the little moment of tension had passed, and the remainder of our official welcome home dinner was wonderful. The stew tasted every bit as delicious as it smelled, and I surprised myself with how much of it disappeared from my bowl.

I have to say, I've been feeling really well lately. I'm not sure what the reason is, but I'm not about to question it. I'm just grateful for the reprieve, because everything in our lives has been so hectic during the past couple of weeks that I couldn't have done even a fraction of the things I needed to do if I'd been fatigued and in pain. I need to be careful not to overextend myself, since I still tire more easily than a normal, healthy person, but it's amazing how much more energetic I am when I'm not in near-constant discomfort.

Victor keeps teasing me about putting on weight. I'm never going to love food, like he does, but recently I've been waking up hungry and wanting to eat something. That hasn't happened for a long time. I think Victor's probably trying to create some momentum for my newfound appetite, because he's been cooking all the things he knows I like, and he's figured out that if he gives me very small portions, I'll succeed in eating everything on my plate. Like he keeps telling me, if it's not enough, I can always ask for seconds.

I can't even begin to tell you how much of a psychological boost it gives me when I actually finish a meal. It helps me feel confident and less anxious about the next one. And who knows? At this rate I may very well put on a kilogram or three. I'm sure my doctor would be pleased if I did.

I wish things could stay like this. It would be amazing if I could get up every day for the rest of my life and enjoy breakfast with my soulmate, and have plenty of energy to do what I want to do. Sadly, though, it won't be this way indefinitely. I'm living with a chronic digestive system condition, an auto-immune disorder that can only be managed, not cured.

The medications I have to take to suppress my mutinous immune response and prevent my body from literally attacking itself unfortunately also make me susceptible to every contagious illness that goes around, so even when my insides are more or less behaving themselves, it's not always smooth sailing. The meds effectively weaken my body's ability to fight, so I never get just a little bit sick with a cold or the flu or a stomach bug. Even the most minor illnesses can end up being a big deal for me.

Last winter's cold, for example, evolved into a respiratory infection that put me in the hospital for eight days. That was... not fun. I seriously thought I was dying, and poor Victor was so exhausted from stress and lack of sleep by the time I was finally able to go home that I had to ask my mother if she'd come over and help us out a bit, just so he could rest. Even after I was technically better and no longer taking a cocktail of antibiotics, the reality was that I spent the rest of the winter recovering.

But, enough of that. It's all behind us for the time being. Right now, I'm feeling strong, and I'm determined to make the most of it while I can.

I have things i want to accomplish here at home, and of course Victor and I are planning our first international voyage together. We're hoping to travel during the Winterfest holiday. We’ll only be able to go for a week or ten days, but I think I'm okay with that. Plus, at that time of year, I know Victor won't want to be away from the mountain for too long. We're tentatively considering Selvadorada, although for my first trip outside my home country, I'm kind of leaning toward someplace a little less... unpredictable. Wherever our destination is, I'm keeping my fingers crossed that I'll be feeling as good as I do now and that I'll be prepared to embrace our adventure to the fullest.

In other news, things are going amazingly well for me at work. Do you remember my company's newest client? The one I had to prepare a sales presentation for a few weeks ago? Well, it's the sports equipment company GnomeSports, and among other things, they make skis and snowboards.

My boss, Mr. Tanaka, said I'd get a bonus if we succeeded in getting them to hire us for their marketing and communications. I'll be honest; I was hoping the bonus would be money. It wasn't, but I was far from disappointed when i found out what it was. My bonus turned out to be a credit to purchase something from the company's range of products, and it was a significantly large enough amount that it covered the cost of two pro-class snowboards. One for Victor, and one for me.

I haven't told Victor yet. All he knows so far is that I needed the car today because I had to go into town to pick up something related to my work.

His new board is exactly the one that he's been drooling over for months on the company's website. It's even the colour that he said he wanted. I half thought about putting it away and surprising him with it for his birthday, but I don't think I'd be able to keep it a secret from him until winter. Besides, he'll need time to break it in if he's going to ride it in competition this season.

I can't wait to see the look on his face when he gets home from work and sees it.

Yes, that's our other big news. Victor got a job. He's a personal health and wellness coach, and he's working right here in Kiyomatsu at the fitness center. Today was his first day.

He was so nervous this morning before he left. Ever since he was offered the position, he's been worrying about his language ability and his social etiquette and whether or not he'll fit in with his co-workers and get along with his new clients. I've told him over and over that his manners and his language skills are fine, and Victor is a people-person, so I have absolutely no doubt that everyone will like him.

Doesn't he look adorable in his uniform? He can be my personal wellness coach any time.

Sorry... that's our inside joke. Essentially, Victor is my personal wellness coach, and he's very good at it. The only difference now is that we get to take advantage of a lot of the fitness center's services for free, and so he'll be able to help me change my exercise program and start teaching me how to lift weights safely. I can also get therapeutic massages for a reduced fee, due to the fact that I'm Victor's 'spouse'.

We laughed about that yesterday when he came home from his work orientation and told me that he'd added me as a beneficiary to his new insurance benefits, and had put my name on the center's list of immediate family members of staff.

"I had to tick the box for 'spouse or partner'," he'd said. "It didn't have a box for 'soulmate'. I hope that's okay."

He was so earnest, I just wanted to hug him and ruffle his hair. "Of course it's okay," I'd told him. "We're partners, aren't we?"

"In every way," he'd agreed.

Another perk of the fitness center that we can access for free is the pool, and my personal wellness coach has promised to teach me how to swim. I'm a little scared, but also excited. It's something I've wanted to do for a while, but never had the opportunity and the stamina at the same time. Now, I've got both, and it seems like the perfect moment.

I'm going to end this entry here, because I have to pick Victor up from work soon. I'm sure he'll be bursting to tell you all about his new job next time, and his new snowboard as well. Don't be surprised if he's more excited about his board than his job. Knowing him, he'll want to try it out as soon as the rain stops.

When we take our new boards up to the trails for a test run, we'll try to remember to give you the full tour. See you soon on the mountain!

[femstyles]

X

[therevengeoffrankenstein]

*youtuber voice* helloeverybodyand Welcome Back. I am, Once Again. probably getting sick!!!

[fighting-shit-with-sass]

I’m a wee bit traumatized

I ended up in the cardio thorax ICU early this morning...and a little bit ago the patient in the next room died after being revived 3 times throughout the night...I don’t know how to feel.

[chronic-confessions]

Confession #3,348

Death is just a tease. No one around me understands what it’s like to have a disease that causes your body to attack itself for no reason at all. Every time it flares it feels as if I get closer to death but I’m forever staring on the edge gently entangled in its pain-inducing grasp but the cold silence never comes. It infuriates me that no matter how bad it gets and how intense this pain is, I’ll always barely bounce back from oblivion and have to relive it all again.

[nicejewishgirl]

Last night, I was kind of liveblogging through The Big Sick and although those posts reflect how I felt about the film, I decided that a detailed review was needed and really quite necessary for people with moderate to severe chronic illness/disability. I have to qualify with “moderate to severe” ever since a certain aspect of tumblr has hijacked the chronic illness and disabled community but that is another post for another time. Upon greater reflection and having the evening to digest the film, I have grown even more bitter towards the films flippant depiction of Still’s disease and it’s romanticization of internalized racism. I know so many of my mutuals recommended this film to me because it was a heart warming romantic comedy but for someone with my disease state, it was far from comedic. More than anything, the part where Emily makes a “full recovery” broke me for a variety of reasons that I will try to explain to the best of my ability so watch out for it. 

[waywardvictorianconfessions]

As someone who suffers from an auto-immune disease myself, and whose weight has fluctuated greatly because of it, I do sympathise with her latest blog post. On the other hand, it feels… dare I say it, tacky and almost crass, to bring her ill health into the AI heat. It's bad enough that her stans use her mental health as a valid excuse for her awful behaviour but now they're going to be using her physical health as an excuse too, and anyone who disagrees will be seen as a heartless asshole.

[ahhscheisse]

“stomach ache” is something that happened because i’ve had UC since i was seven years old, and after having pretty severe anxiety for about ten years now, i may have developed IBS as a result (apparently, i’m lucky it didn’t happen sooner. thank). so. that sucks and i’ve been in daily pain for 12 solid months now (started sometime just before last october, and is still happening now).

for a print of this (without the signature), click here! buying my artwork helps me pay for top surgery! which i just started the process for yesterday! ahhhh!

i also have a website lol