#mctd

[chronicillnesshumor]

[disabledsysboxes]

Autoimmune - 6

[partykillervibecrusher]

Ugh my lupus is so itchy, nothing is helping ease the rashes or hives

My body is so blistered and swollen but my insurance dropped and I can't afford to pay for any meds to treat it

I've tried every over the counter solution I can think of but I'm just writhing in agony here

[abirdepisode]

it’s 50*F and raining outside. my window is completely open and i’m not wearing a shirt. WHY AM I SWEATING

[crimeronan]

god i'm so relieved about my test results i'm so relieved i'm SO relieved. i was so disappointed to see everything come back very close to normal ranges yesterday because i was like "damn, i really thought i'd test positive for SOMETHING since i've felt like such dogshit lately. i guess maybe i was making up how bad i feel?? i guess i have to go get sunburnt and eat a bunch of food that disagrees with me and get Really sick to get answers"

and then today's results came in like "no girl. this one antibody is so high that we apparently stopped counting*. that is indeed why you've felt like such dogshit lately." i feel like i just won the lottery like the impact on my quality of life is SO ENORMOUSSS.

*this is tongue-in-cheek i'm not sure exactly how the numbers are counted. i just know that this abnormal result just says "more than X ridiculously high amount" when all my normal results just say "less than X very normal amount."

[starlettu]

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

[chronicillnesscollector]

absolutely love your url, just thought you should know.

thanks I like yours too, straight to the point 😂

[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.

[grendel-menz]

I’ve missed a few days of work due to MCTD if you’ve enjoyed my work consider buying me a kofi or looking at my shop!

[does-truth-matter]

The CDC has quietly changed who should AVOID the MMR vaccine.

https://www.cdc.gov/vaccines/vpd/mmr/public/index.html

They now state that ANYONE that “Has a parent, brother or sister with a history of immune system problems” should AVOID THE MMR VACCINE!

What exactly is an 'immune system problem?" Every autoimmune disorder.

* Achalasia

* Addison’s disease

* Adult Still's disease

* Agammaglobulinemia

* Alopecia areata

* Amyloidosis

* Amyotrophic lateral sclerosis (Lou Gehrigs)

* Ankylosing spondylitis

* Anti-GBM/Anti-TBM nephritis

* Antiphospholipid syndrome

* Autoimmune angioedema

* Autoimmune dysautonomia

* Autoimmune encephalomyelitis

* Autoimmune hepatitis

* Autoimmune inner ear disease (AIED)

* Autoimmune myocarditis

* Autoimmune oophoritis

* Autoimmune orchitis

* Autoimmune pancreatitis

* Autoimmune retinopathy

* Autoimmune urticaria

* Axonal & neuronal neuropathy (AMAN)

* Baló disease

* Behcet’s disease

* Benign mucosal pemphigoid

* Bullous pemphigoid

* Castleman disease (CD)

* Celiac disease

* Chagas disease

* Chronic inflammatory demyelinating polyneuropathy (CIDP)

* Chronic recurrent multifocal osteomyelitis (CRMO)

* Churg-Strauss Syndrome (CSS) or Eosinophilic Granulomatosis (EGPA)

* Cicatricial pemphigoid

* Cogan’s syndrome

* Cold agglutinin disease

* Congenital heart block

* Coxsackie myocarditis

* CREST syndrome

* Crohn’s disease

* Dermatitis herpetiformis

* Dermatomyositis

* Devic’s disease (neuromyelitis optica)

* Discoid lupus

* Dressler’s syndrome

* Endometriosis

* Eosinophilic esophagitis (EoE)

* Eosinophilic fasciitis

* Erythema nodosum

* Essential mixed cryoglobulinemia

* Evans syndrome

* Fibromyalgia

* Fibrosing alveolitis

* Giant cell arteritis (temporal arteritis)

* Giant cell myocarditis

* Glomerulonephritis

* Goodpasture’s syndrome

* Granulomatosis with Polyangiitis

* Graves’ disease

* Guillain-Barre syndrome

* Hashimoto’s thyroiditis

* Hemolytic anemia

* Henoch-Schonlein purpura (HSP)

* Herpes gestationis or pemphigoid gestationis (PG)

* Hidradenitis Suppurativa (HS) (Acne Inversa)

* Hypogammalglobulinemia

* IgA Nephropathy

* IgG4-related sclerosing disease

* Immune thrombocytopenic purpura (ITP)

* Inclusion body myositis (IBM)

* Interstitial cystitis (IC)

* Juvenile arthritis

* Juvenile diabetes (Type 1 diabetes)

* Juvenile myositis (JM)

* Kawasaki disease

* Lambert-Eaton syndrome

* Leukocytoclastic vasculitis

* Lichen planus

* Lichen sclerosus

* Ligneous conjunctivitis

* Linear IgA disease (LAD)

* Lupus

* Lyme disease chronic

* Meniere’s disease

* Microscopic polyangiitis (MPA)

* Mixed connective tissue disease (MCTD)

* Mooren’s ulcer

* Mucha-Habermann disease

* Multifocal Motor Neuropathy (MMN) or MMNCB

* Multiple sclerosis

* Myasthenia gravis

* Myositis

* Narcolepsy

* Neonatal Lupus

* Neuromyelitis optica

* Neutropenia

* Ocular cicatricial pemphigoid

* Optic neuritis

* Palindromic rheumatism (PR)

* PANDAS

* Parkinson's disease

* Paraneoplastic cerebellar degeneration (PCD)

* Paroxysmal nocturnal hemoglobinuria (PNH)

* Parry Romberg syndrome

* Pars planitis (peripheral uveitis)

* Parsonage-Turner syndrome

* Pemphigus

* Peripheral neuropathy

* Perivenous encephalomyelitis

* Pernicious anemia (PA)

* POEMS syndrome

* Polyarteritis nodosa

* Polyglandular syndromes type I, II, III

* Polymyalgia rheumatica

* Polymyositis

* Postmyocardial infarction syndrome

* Postpericardiotomy syndrome

* Primary biliary cirrhosis

* Primary sclerosing cholangitis

* Progesterone dermatitis

* Psoriasis

* Psoriatic arthritis

* Pure red cell aplasia (PRCA)

* Pyoderma gangrenosum

* Raynaud’s phenomenon

* Reactive Arthritis

* Reflex sympathetic dystrophy

* Relapsing polychondritis

* Restless legs syndrome (RLS)

* Retroperitoneal fibrosis

* Rheumatic fever

* Rheumatoid arthritis

* Sarcoidosis

* Schmidt syndrome

* Scleritis

* Scleroderma

* Sjögren’s syndrome

* Sperm & testicular autoimmunity

* Stiff person syndrome (SPS)

* Subacute bacterial endocarditis (SBE)

* Susac’s syndrome

* Sympathetic ophthalmia (SO)

* Takayasu’s arteritis

* Temporal arteritis/Giant cell arteritis

* Thrombocytopenic purpura (TTP)

* Tolosa-Hunt syndrome (THS)

* Transverse myelitis

* Type 1 diabetes

* Ulcerative colitis (UC)

* Undifferentiated connective tissue disease (UCTD)

* Uveitis

* Vasculitis

* Vitiligo

* Vogt-Koyanagi-Harada Disease

Wonder how many doctors are paying attention?

~shared from Jodi Wilson

[chronicillnesshumor]

[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.

[techni-kolor]

In about a week I've heard get tested for atypical cystic fibrous ... yeah this is probably Lupus or MCTD ... and you're fine. Stop whining. You're very healthy

[decompose1]

nevermind MCTD sucks i hate it actually i want my joints and hands to stop hurting really bad . what the fuck is even the point why is the disease just "multiple different autoimmune disorders" why am i avatar the last cripple

[xxtowardsthesunxx]

I haven't posted much here in a while; wanted to post an update.

recently, my dr told me he now suspects I do have eds, rather than mctd. so now we're trying to get me into a rheum and have genetic testing done. the gp suspects ceds, while the np has some suspicion it could be veds. it feels really weird to have this curveball suddenly thrown at me, five years into my journey.

I'm trying to engage more in the online community, so this is my official introduction post for edsblr. so. hi 👋

[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.