#mctd things

[birthdau]

living life with an autoimmune disease is so frustrating because an event one day can wipe you out the entire next day. people think im just lazy, but no :-) im chronically ill

[crimeronan]

now that the elation of being on-paper sick has worn off i'm back to getting my feelings hurt by innocent posts. anyway someday within the next few months i'm gonna be on a bunch of prednisone or other steroids and then i'm gonna do all my dishes and clean my whole house and go swimming and do my job and fix my life and it's okay that i fucking suck at doing any of those things now because i have a debilitating physical disability.

snide posts about how depressed people need to put on their big-boy pants and take care of themselves are not actually about me because what i am contending with is not depression. what i am contending with is a progressive disease that destroys my muscles, skin, joints, and potentially lungs kidneys and brain. that is not the same as being too sad to get up and wash a dish.

generalized spoonie advice and outlooks feel too optimistic or out-of-touch or non-applicable to me because they aren't applicable to me because what i am contending with is not an average spoonie experience. it is a specific progressive disease that destroys my muscles, skin, joints, and potentially lungs kidneys and brain.

if i feel bad and need to rest and don't pull my weight in my relationships it's because i need to wait to be treated with steroids and in the meantime i just need to hold on. i am not required to do anything else to take care of myself. my body is eating itself with a condition that has a high rate of fatal complications and literally my only job is not to die.

my only job is not to die. that is the only thing i need to do right now. any posts saying that people need to do anything else for self-care or for being a good person or for having healthy relationships are not applicable to me, because my circumstances are highly specific. healthy people need to take steps to better their lives. people like me need to rest until our doctors can help us because overtaxing ourselves might kill us.

a depressed person being too sad and hopeless and miserable to get up is being lied to by their brain. my brain is not lying to me when it tells me that i need to rest because my body is on fire.

my only job right now is not to die.

[scythemichaelfaraday]

I am once again realizing that engaging with anything JTHM related while actively struggling with many mental illnesses is in fact bad for my health.

Under the cut: a love letter to JTHM with a side of divorce papers. Also an apology to anyone in the community who I've hurt directly or indirectly.

I think I’ve come to the conclusion that I found a space for JTHM in my life when I really needed it to find me. It helped me find my best friend, my spouse, and many cool people who have made all sorts of impacts on my life.

It helped me feel seen when I was struggling with coming to terms with the "darker" and "scarier" symptoms (homicidal ideation, delusions, paranoia) of my disorders. It helped me feel like I wasn't alone in my despair and my anger and angst.

It helped me process when I lost my sister to suicide. It helped me explicitly write out my darkest fantasies of violently killing the people who kept my sister from coming home from the morgue. It helped me take out all of my pain and trauma out on a single individual that already was hurting so deeply, so why not hurt him more. But as time has gone on, I've realized that I have distanced myself farther and farther from the source. I've created a Johnny of my own- one different but cut from the same cloth of Jhonen's. It became unclear to me where I started and Johnny began. I integrated so much of myself into my version of how I wrote and drew Johnny that it started to seem more like a mirror than a self-portrait.

I cut my hair like him. I wore similar clothes. I acted in a similar manner. I imagined myself looking like him when people perceived me, despite being... 5'1", filipino, and not-at-all thin.

I had a dilemma, I wanted to be him, but I also wanted him to be more like me.

I styled his hair to be more like mine: less spiky, more soft, rounded, full with my current (constantly changing hair color) to match. I gave him my glasses. I put him in my clothes. I gave him undiagnosed chronic pain, then MCTD, then fibromyalgia. I gave him a cane. I gave him self harm scars in the exact same places mine are. I later gave him my "sexuality" (both in terms of orientation and otherwise) and my gender identity. He has my Bipolar, BPD, PTSD, ADHD, ED, Anxiety, etc. And finally, I gave him my partner, or at least the characters that my partner also furnished for themself.

At this point in my journey of mental health, I can say that I've turned Johnny into quite the projection. Even before I met my current partner, I gave him a spouse and kids, things that I vehemently denied wanting, but secretly desired to be stable enough to have. Well... less so the kids.

I wanted him to recover in the same way that I wanted and still want to. Not to be "fixed." There is no fixing mental illness, just treating it and learning how to live with it. Fucking up and fixing along the way. Just like I gave him those other things, I inserted a support system into his life; I gave him a family; I gave him a purpose outside of the one that Jhonen made him for and... it felt freeing but it also felt scandalous. Sacrilegious. Forbidden.

I was so afraid that people would see the Johnny I "created" and shun him and by extension, me. "He's out of character. He would never say that. This is who he is. This is who he is only allowed to be."

As someone with Borderline, I internalized the outcry of OOC as an attack against my constantly fractured sense of identity and kept myself stuck in the ways I always were. I believed that in order to stay within the community/fandom, I would have to stay as sick and as disordered as possible or else I'd be an outsider someone who just "doesn't get it." Someone who "doesn't get Johnny."

And maybe I do, maybe I don't. Maybe there really isn't "getting" Johnny in the same way for everyone, but this isn't about that.

On the opposite hand, when I became more secure in my recovery (or at least during a phase of it) I was more defensive of my depictions. That other people were talking about me behind my back, that I was pariah of sorts that dared to think differently. I thought: these people want to stay stuck, they want Johnny to stay stuck. They engage in these things that are so sickening and awful. Why can't they be like me and just hurt themselves?!

Then, someone's response to it made me realize that I was no better no different than them. What gave me the right to judge people for how they coped with their trauma and disorders? My cutting, my vent art, and interaction with the same exact media was just the same as them engaging in a community that while I still wouldn't become a part of, I have newfound respect for. We are all just trying to fucking cope with our awful lives and experiences and I had and have NO RIGHT to judge them for it.

So to be crystal clear without naming names: I am sorry for what I've said about people who engage with the TCC. I am sorry for what I've said regarding people liking Jimmy. I have not sent anon hate or any hate to people who like Jimmy, but I have made comments such as "liking X is like you being the Jimmy" and thus have contributed to the fandom's hostility towards people who like Jimmy. It is through these people that I've discovered that there is a lot more nuance than I can personally appreciate for the character. I may not like him still, but I do respect and admire anyone who can find comfort in him or otherwise.

Since then, it's been a journey of accepting that from the start, I have engaged with the community from a standpoint of mental illness. Much like someone forms a trauma bond with a friend or acquaintance, I trauma-bonded with JTHM and have been "married" to it for 7 (heh heh) long, complicated years. It's been my personality, my identity, my story, my thoughts, my everything. I didn't lose myself in JTHM, because I never knew who I was, and I still don't. But remaining married to it has severely impeded my ability to learn who I am.

I did character analysis after character analysis. I combed through every last page, read every last note Jhonen wrote, turned the book over and over to read the hidden messages in the borders. I tried to parse who Johnny is, who he wants to be, his likes, dislikes, his dreams, nightmares, fears, everything. I asked him everything about himself, but I didn't once turn those questions towards myself directly.

I want to learn who Zzy is. What Zzy wants. What Zzy likes, dislikes, fears, aspires to, everything. And with this final step towards freedom from JTHM, I think that I am ready to learn who they are. Or at least, try. I want to try for them.

This doesn't mean that I will be leaving behind the Johnny I've built, but rather that I will work towards making him something of my own rather than the extension of something that was never mine to begin with. I love the world and story I've built with him too much.

So thank you, JTHM, thank you Jhonen, for giving me some serious pain food to chew on. My monster's teeth have been continually sharpened and worn down all these years thanks to your help, but I think I can take it from here. I will never forget the awesome people you've connected me with, the experiences you've granted me, and the relief you've offered.

However, we also have not been good to or for each other. I made you into everything about me. I forced you into every corner of my life. You convinced me to abandon all hope of wellness and manipulated me into the temptation to stay with you even when I knew it'd be better to distance ourselves. You kept me from discovering myself in some of my most formative years. These are things that will take a while to recover from. And these are things that cause me to tell you that we are done.

This isn't goodbye forever, but this is sayonara for now.

[spacejammie-eimmajecaps]

1, 5 and 7?

1. what disability/ies do you have? (and are they mental, physical, or both?)

Mental: autism, adhd, anxiety, depression, ptsd, insomnia

Physical: postural orthostatic tachycardia syndrome, inappropriate sinus tachycardia, superventrical tachycardia, migraines, fibromyalgia, ibs, mild asthma that only bothers me when I'm sick or in response to certain medications, and cfs/me (which is the most recent dx and I got that from having covid last summer). And then I don't think I'm officially diagnosed with this yet, but my rheumatologist is monitoring me for MCTD, like I have to get labs done every 6 months to make sure it hasn't fully developed or something like that.

Feel like I'm forgetting something, but yeah, it's a lot to keep track of. I'm being held together by duct tape and desperation at this point.

2. if you have multiple disabilities: do they affect each other? how?

They all affect each other in different ways. Honestly, I feel like it was all carefully balancing out for a while, but CFS has really screwed me over and thrown everything off. For example, exercise improves a significant portion of my conditions, but I can no longer exercise at all without it triggering a CFS flare up (which basically feels like having the flu, like being really tired and achy and feeling like you have a fever without actually having a fever).

Also, if I'm having a fibro flare up, it makes my insomnia way worse, and not getting enough sleep is one of my migraine triggers. Not sleeping enough also makes my anxiety worse.

Mental health wise, I think my depression stems almost entirely from my physical illnesses. Like from the isolation, pain, and slowly losing various capabilities.

7. what's a struggle you wish more people talked about?

How hard it is to believe that things will ever get better.

[accipitae]

Found out last night that my mom was diagnosed with mixed connective tissue disease a while back. Reading through the symptoms is like "oh. This is familiar". So definitely gonna ask my rheumatologist about it when I see him in two weeks.

The weird thing is I can't find anything about hypermobility in MCTD, and I'm definitely hypermobile. Of course it's always possible I've got multiple joint ailments lol.

[lilynight]

Wait is this a thing with MCTD I thought this was just me

Gotta love when my bladder does the thing where I have every single symptom of a uti but don’t actually have a uti so instead of taking antibiotics and having it gone in a few days I just get to suffer through it for however many days/weeks 🙃 and I do have the weird orange pills but I have to use those super sparingly because otherwise my kidneys will start their fuckery

[ultraviolencced]

being the oldest sister is a fucking curse

[ebbiemunson]

Verse: Synecdoche

I don't usually make actual posts for my verses but this one is a little closer to my heart so here we go.

Disabled Eddie

This verse will be based on my own PHYSICAL disabilities.

Diagnosed with:

Multiple Sclerosis

Cyclical Vomiting

Diabetes Type 2

Mixed Connective Tissue disease

Frequent Symptoms Eddie Experiences:

Chronic Extreme Fatigue (MS, MCTD, Diabetes, CV)

Memory issues (MS, MCTD)

Brain fog (MS, MCTD)

Inability to focus (MS, MCTD)

Chronic Pain (MS, MCTD, CV)

Cluster Headaches

Migraines

What is Cyclical Vomiting and how does it present in Eddie Munson:

Cyclical vomiting is a Migraine disorder, and presents in the abdomen! It is a disorder that causes frequent and intense bouts of vomiting, ranging from an hour to several days. It also can cause severe diarrhea and intense abdominal pain.

There are several things that can trigger an episode, but Eddie's episodes are triggered mostly by food.

His triggers:

Coconut

Pork/Ham

Carrots

Dark Chocolate

Colored sodas that have red or blue dye

Avocado

Turkey

Being over heated can also cause Eddie to enter a cyclical vomiting episode, as it causes a heat migraine, which makes the rest of his body fall out of whack. He takes medication for this disorder.

Eddie's Multiple Sclerosis:

Eddie's MS first presented in his right hand going numb through the index and thumb, losing sensation. Doctors thought he had carpel tunnel syndrome, and since Eddie was a guitar player, he was taking this seriously. He went to the doctor, and they found abdnormal activity in his nervous system consistent with a neurodegenerative disorder by conducting a Nerve Conduction test. With several MRIs, and a trip to a neurologist, at 17, Eddie was diagnosed with Multiple Sclerosis and failed his senior year of high school.

Shortly after his diagnosis, Eddie experienced what was known as the MS hug, in which he experienced extreme squeezing around his chest, and abdomen, making it difficult for him to breathe. He spent 3 months recovering from this MS relapse, and during his second repeat of Senior year, Eddie experienced his third major MS relapse, in which the entire side of his body on the left side went completely numb and lost sensation.

Eddie had issues with walking, holding things, talking, using the washroom, dressing himself, showering, and had major impacts on his quality of life. This relapse lasted about 4 months, and his body was able to recover from it to almost full function again. He still has sensation loss in his finger tips, but has regained full dexterity through physical therapy.

Eddie is heavily Medicated for this disorder.

Common symptoms Eddie experiences:

vertigo

heat sensitivity

sun sensitivity

memory loss

memory retention issues

concentration issues

brain fog

insomnia

chronic pain

stress incontinence

trouble with speaking at times

trouble with writing at times

Eddie's Diabetes:

Eddie is an insulin dependent type two diabetic. He has a hard time keeping on weight because he tries to stick to a lower carb diet, which is difficult to balance with his cyclical vomiting.

Eddie's Mixed Connective Tissue Disease:

While searching for answers regarding the numbness in his hand, Eddie spoke to his doctors about some of the extreme chronic pain he had been experiencing for years. With several blood tests, he came back with Lupus markers, and showed some symptoms related to Reynauds, and Elhers Danlos. Since he didn't meet any diagnostic criteria for any single connective tissue disease, Eddie was given the label of having Mixed Connective Tissue Disease. He is medicated for this.

[jonathan-cranes-mistress-of-fear]

I have the headcanon that Jonathan Crane has EDS(or another MCTD). Was reminded/validated about this in your post where he’s able to escape from a straight jacket- as non-trick/medical-grade straight jackets can only be escaped from, without prior set up for a trick, through A. Hypermobility and or B. Dislocation. Both symptoms of EDS. Plus fits into his rag-doll/scarecrow aesthetic. Also things like insomnia, near sightedness, swan-necking we see, and more.

Oh wow that’s really interesting of a headcanon you got there, I’ve never heard of it and had to goggle a little but I get the jist now! I’m glad my post could make you happy, I’m all here for Scarecrow having hyper mobility and double jointed-ness. I think it really suits him.

It’s really cool learning about medical conditions through Scarecrow. :)

[whereflowersbloom]

Hey, are you okay?

Hello, Uhmm I apologize in advance, some people are worried. I have received several messages from people asking if I’m alright.

I don’t know if all my followers know this but I suffer from an autoimmune disease. I was diagnosed with MCTD two years ago. It changed my life drastically, I used to be a runner, I was about to move to Germany to study my master degree. Unfortunately, my illness has affected my muscles, joints and organs. And my digestive system to the point I can only keep down around 30% of the food I eat. During 2020 my health has deteriorated badly. Writing is pretty much the only thing I can do now and I have a hard time typing so that’s probably going to be taken away from me at some point, that’s the reason why I’ve been writing a lot lately. And sadly, someday I’ll have to leave this blog.

I don’t talk about this with everyone because I constantly feel like a burden to my family and friends. I’m conscious what’s happening to my body, so I’ve decided to spend my days writing and reading fan fiction, playing with my nephews and what not. Joining the fandom was one of the best things ever happened to me this year. Everyone’s so kind and passionate. One of my dreams was to publish a book, but I don’t see that happening , at least I’m leaving my contribution to the fandom with my stories. So I apologize if I can’t update all the time, even if my mind is restless thinking about the next chapter or update, my body can’t keep up.

Anyway, I’m okay but deep down not really. I suppose there isn’t an easy way to explain it. But I appreciate your sincere concern and thank you for supporting me. Please don’t think I’m abandoning this blog and the fandom voluntarily though. Have a great day/night ❤️

I’m terribly at explaining my delicate condition. Sorry.

[lifewithchronicpain-original]

I wrote an article years ago titled "Humiliated by a Pharmacist" about how difficult it is to be a chronic pain patient and to get prescriptions filled for pain medicines.

I would love to report things are better now, but sadly the truth is they aren't.

I was diagnosed with Mixed Connective Tissue Disease (MCTD) in 2001. Having MCTD basically means a person has two or more overlapping autoimmune conditions. Mine are dermatomyositis, rheumatoid arthritis and psoriatic arthritis. These are all very painful conditions to have.

Since I've been dealing with MCTD for so many years, I've dealt with a lot of different pharmacists and learned a few things. Whenever I enter a pharmacy for the first time, I like to speak with the manager and explain my conditions and what I need from them. Then, I ask what they need from me and if they are willing to work with me. I just want to make sure we understand each other and are on the same page.

Picking up my prescriptions went smoothly for awhile. It was still stressful and scary to approach the dreaded pharmacy counter and hand over my prescription for an opioid. They still look at the Rx and up at me with judgmental eyes. They still have an attitude and no empathy whatsoever. (Read more at link)

[crimeronan]

Hey, i just wanted to say that my thoughts are with you. When I was a child, my mother got very sick and underwent a long, long period of testing until finally they realized she might have lupus and then finally realized she has rheumatoid arthritis. there are times she has been very sick and times she has been very well, and getting her to accept that she has a disability and that she needs to listen to her body was a long fight, the latter still ongoing. it’s so good that you are already conscious of that. i know you know that life can be lived just as thoroughly with a chronic illness as without one, but i’m hoping that hearing it from someone who’s seen it for over ten years can be helpful in some way. sending you strength & hope. I hope things get easier as soon as possible for you <3

thanks so much! it helps that i've had a lot of chronically ill people in my family and friend circle. if i start treating myself like shit after saying "listen to your body" to them for ages, they will KICK my ASS.

it's hard to be in the in-between period waiting for treatment -- since the doctor's office isn't open today, i won't hear back about whether i can be seen sooner until tomorrow at the earliest. and since i've already messaged the doc and can't do anything proactive, i find myself just laying in bed googling things like "survival rates for MCTD" and then being like girl. don't do that.......

i'm antsy to get treatment and i hope i won't have to wait a full two months before that happens. but mainly i feel really validated and relieved. it's hard to explain to people that you can kind of feel things going Badly Wrong in your body, especially when there aren't specific symptoms or test results to point to. i've been getting progressively sicker over the past few months but there was a very real part of me going, "is this just because i'm not exercising enough, though?? am i just making up excuses not to exercise or do chores or do my job because i've gotten too comfortable burdening my partners??"

so i almost can't believe i have on-paper confirmation now i feel SO lucky and blessed. turns out i've felt sick because i AM sick and the choice to laze around making life harder for people was in fact a lifesaving one! who knew.

[whitewolfofrivia]

I haven’t been able to write a lot lately. I still have quite a few things in my drafts and I have not forgotten any of the people I have things going with. I will try to answer some of the asks I have sitting in my inbox, because a few of them can easily be shorter stuff. If anyone wants to send in more conversationy stuff, even if we have a long thread going, please don’t hesitate.

Reason for lack of writing under the cut. Mention of physical ailment.

Winter is a rough time for my arthritis and MCTD and pressing keys has become actively uncomfortable between joint aches and stiffness. I used to be able to type very quickly and having to slow down so much and constantly misstyping is grating on my ego :D Add to that the fatigue that comes with many autoimmune diseases and you may see where the low activity comes from.

I don’t need pity. But I have been getting some messages about if I am still interested in RPing and yes, I am. I am just having to ration it a little.

[autoimmuneal-blog]

Decided to start small. Maybe spread a little awareness and maybe help those who are going through a hard time with their own stuff. It took a long time for me to be "okay" with what was given to me... No, I do not have cancer. The baldness is from an autoimmune disease. I was diagnosed with alopecia areata when I was 7 years old. I still remember the day. It was picture day when I was in 2nd grade and my mom had braided my hair into 2 pigtails and was drying my bangs. She then said, "it looks like you hair is thinning out." Fast forward too many doctor's visits, blood tests, and experimental drug treatments... still bald and 25 now! It hasn't stopped me from doing anything, but you'll here more of my story as I go about this whole thing. Be back soon! #mctd #mixedconnectivetissuedisease #autoimmunedisease #tattoo #girlswithtattoos #cancer #bald #alopeciaareata #alopecia #autoimmune #disease #diseases #awareness #wigs #selflove #lupus #sle #rheumatoidarthritis #arthritis #beauty #flowers #poppies #spreadlove #story #baldgirl #fitness #health https://www.instagram.com/p/BvHXFQQlESQ/?utm_source=ig_tumblr_share&igshid=1scy3njmmj692

[depphead-neverfeartruth]

#Repost @spondymom (@get_repost) ・・・ In today’s society we know first hand what it’s like to be diminished for what we can no longer do. There are times we’re seen as ‘less than’ and made to feel like a burden. My opinion~ let the haters hate and the doubters doubt because that’s on them, NOT YOU! Never let anyone diminish your worth! You didn’t choose the chronically ill life, this life was thrust upon you without your consent. If anything, we as a community are more valuable because we know what it’s like for life to change in the blink of an eye. Therefore, we are more kind and compassionate to others because we’ve seen defeat. We appreciate things in life that most take for granted because we no what it’s like to do without. We tend to put others happiness above our own because we know what true darkness is. See, we as a community are what this world needs... more caring and compassionate individuals looking out for each other, instead of tearing each other down. So always remember how truly awesome you are and never let anyone make you feel otherwise!💙 #disability #disabled #youareenough #chronicallyawesome #ankylosingspondylitis #spondylitis #psoriaticarthritis #rheumatoidarthritis #fibromyalgia #lupus #arthritis #chrons #multiplesclerosis #chronicillness #chronicdisease #invisibleillness #autoimmunedisease #MCTD #chronicpain #fatigue #brainfog #butyoudontlooksick #spoonie #chronicpainwarrior #ASwarrior #spondymom https://www.instagram.com/nobblebonce_morningstar/p/BuwOuCEBUGQ/?utm_source=ig_tumblr_share&igshid=vqiftastp69q

[tesserts]

I am a spoonie that suffers from Mixed connective tissue disease, hashimoto's thyroiditis, cardiomyopathy, left ventricular hypertrophy, chronic fatigue, a few other things that were caused by MCTD. It's extremely hard for people like me to push through a regular day but as a budding entrepreneur it's indescribable. I try to focus more on the things that I can do instead of the things that I can't do or I will sink back into depression and that's not something that I want or need. So I just wanted to take time out to say to all my spoonie brothers and sisters. I see you ... you're doing a great job. Keep going! ♥️♥️♥️♥️♥️ #spoonie #autoimmunedisease #invisibleillness #heartdisease #hashimotos #mctd #lupus #glaucoma #entrepreneur #keepgoing https://www.instagram.com/p/Chu1iYsudFF/?igshid=NGJjMDIxMWI=