#hyper IgE syndrome

[delirium-mind]

For most people, getting medical tests results that say

"No abnormalities, everything is normal" is great

But when you constantly are in pain, can't eat can't lay down can't sleep or hardly do anything..its such a fuck you slap in the face. It's hard enough to get doctors to believe you in the first place to get any testing going on...then to get this result? It just feels like it ruins any and all chances you might have had and flushes them down the fucking drain.

Having a (invisible) chronic illness sucks but it's mostly because doctors don't seem to want to listen or believe you.

[p0isongirlfriend]

and i don't hate you anymore, but feeling any other way would be betraying my old self. through me she's channeling her hatred towards you, for everything you did. i may not feel anything for you right now, but she wants to see you burn, and i will never stop until i do that for her.

what did you think would happen when you tried to talk to me? why did you think you would get anything more than an insult? why are you so fucking entitled acting like you didn't leave me without a word two months ago? it's so easy for your disgusting pretentious ass to just pretend nothing ever happened. she will see you burning one day. stupid fucking asshole.

[dolcecuore]

oooo I love this, tysm for the tag !!!

how pinterest sees me ⋆｡༄⋆˚⊹

flower, pantone, actor, singer and couple

tags: @axshiz @rhiannonmoon @datgurl-lizzy @annabellasophie1 @xoxochb @candicecherryworld @pinkprincess92 @sylviaplathwhore

starting a tag game cause, why not? 💌

how does pinterest sees you?

flower, pantone, actor, singer and couple!

tysm for the tag: @xoxoivy13 🫂💓

tags: @catchmeonyourceiling @lovethornes @daystarpoet @beaucereza @chxrrybxmbi @dolcecuore @sororygilmore

[chaoticbuggybitchboy]

Hi!

I kill anti vaxxers on sight

I do not answer donation asks and do not reblog most donation posts. For my mental health. Seriously.

dino nuggies

Nicholases: Anthony Mikey

Nicks: ant; glow

Gender: wobbly (transmasc enby)

Pronouns: ey/vey/zey/they/he any just get silly

Orient.: aro/ace

Status: queerplatonic whore

Age: minor ig

Pronouns Page

Blinkies

Languages: English (native), Spanish (decent), Romanian (bad)

Brain Stuff: OCD, psychosis, bipolar disorder, and suchlike

Physical Stuff: hyper-mobile Ehlers Danlos Spectrum Disorder; postural orthostatic tachycardia syndrome; migraines

DMs?: I’m awkward and may not answer at all. If I don’t say anything after like, two days just assume I either forgot or was just uncomfortable but didn’t want to say anything. Feel free to try again if u want with something else I might reply then. I’m an unpredictable feral rat about DMs sometimes. Idk. Don’t assume I hate you.

Tone tags?: yes

Asks: anything nonsexual and not asking me for money I will not respond to those

Flirting/compliments?: non romantic and nonsexual

Swearing: I swear so much I don’t always register the use of the word fuck and my phone has autocorrected ‘duck’ to ‘fuck’ before.

Previously pinned post: horses

My overly active ao3: ant_is_in_an_anthill

My neglected art blog: @ants-awesome-art-blog (also present here tagged as ‘ant art go brr’)

My danger days fic specifically: endangered gays fic (yes! That’s me!! I’m that guy!! Yippee!!)

Side blogs:

@cherri-cola-soda & @broken-acid-in-the-morning-light & @moth-moon-the-whore & @dead-spider-in-the-sun & @crazy-yellow-bitch (kjrp)

Things I talk about pretty consistently:

- danger days

- Myself

- My danger days fic

Blog tags and more abt me under the cut

Things I talk about sporadically:

- Dracula

- The Historian

- The end Cretaceous Extinction Event

- Star Wars

- TMA & TMAGP

- Languages

- Bears in trees

- Other assorted music artists

- My intense craving for a Mikey Way 2012 fender bass guitar

Tags (I’m still sorting my blog so it’s sporadic and more will be added)

Chaoticbuggybitchboy - literally anything I said words on

Some blogs I interact with semi regularly have their urls tagged

Malevolent ant - me thinking about malevolent whenever I remember to listen to it (sunny I’m so sorry)

Complaining - me. Complaining. About anything and everything

I have a couple levels of vent tags there’s mild vent and cw vent

Infodumping in the tags again - what it sounds like

Ant activated - things relating to world events and general activism stuff

Making up words - for when I’m making up words again

Me when he /p - me posting about a boy I like. I’m sorry. Not stopping.

Ayudame - when I need help but in Spanish

Wtnv rambles - welcome to Nightvale, where I ramble.

Ant the space cadet - Star Wars talk

Showing and telling :] - yeah

My posts that hit it off - ones that took off in some way

My hit bit posts - the two(!!!!) posts bears in trees official reblogged

Marigold corpse fic - a different thing I wrote, also up on ao3 :]

Ant makes polls - get this I make polls

Danger days tags:

Danger days the true lives of the fabulous killjoys - umbrella tag for all danger days content (yes I chose the longest possible tag)

Endangered gays fic - my massive fic series and anything at all related to it (including when I ramble in the tags so remember to check there if ur interested)

Loosers au - “like a cigarette”

Danger days - general danger days; not associated with my fic

Danger days art - art

Ddttlotfk - album stuff talking about the songs rather than the lore

Cosmere tags for my own sanity:

Ant in the cosmere

Ant on scadrial

Ant in the final empire

Ant in the roughs

Ant on roshar

[disabledqueerteenlife]

Intro to my disabilities and my life ig

I have:

Autonomic Dysfunction

- most commonly known version is POTS

Amplified Muscular-skeletal Pain Syndrome (AMPS)

- my nerves are fucked up and always sending pain signals to my brain

AuDHD

- Autism and ADHD… need i say more

Depression & Anxiety

- my mental health is a downward spiral

Undiagnosed shit:

- hearing, eyesight, memory are all deteriorating

- hyper mobility

- tics and being a system

- also migraines

My life:

I’m a senior in high school

also a minor, don’t be weird (don’t be weird even once i turn 18 tho)

im a philly kid

and i want to be a librarian… if my body allows it (and my depression doesn’t win)

i love art, but it can be painful to make… i make it anyway

my queerness:

im an oriented aroace, specifically

lesbian

ace flux

cupioromantic

Im also poly.

Im a genderfluid trans person, who remains outside the gender binary at all times

also.

theres at least seven of us in this body, but this account is mostly run by me, Ashe.

Well, host Ashe cause there’s another Ashe.

Im like the least in denial and realistic about reality.

For reference, the others’ sign offs are as follows

Asp 🐍

Asi 🌌

AsK 🎨

Moss 🖋️

Ashe 🕯️

A 🫥

im gonna make another post with pronouns and shit

Signing off

-Ashe ❤️‍🔥

[aizenat]

I’m at a point where my sympathy for women who choose to do that shit too is dwindling. I had this thought the other day about how everyone these days are so COMMERCIAL.

Everyone acts like they’re a model in a commercial. Gotta have perfect skin, perfect hair, perfect makeup, perfect body, etc. And because of that, the rebellious spirit of youth is completely gone. Kids have always struggled to fit in and at least previous generations had fucking alternative subcultures to seek solace in. But that doesn’t exist today! Fucking marvel is calling Joe Locke in Agatha goth! Bitch where???!!!!!! Black eyeliner, nail polish, and a black hoodie over ripped jeans is not fucking goth! I feel like I’m in 2007 having the whole goth vs emo debate again! Like hello? If anyone wearing those things immediately made them goth then me and my friends in hs were super goth (we weren’t; we couldn’t even afford to dress like the emo kids we were lol)!

Kids don’t rebel anymore! They don’t sneak out to meet boys and girls. They don’t skip classes to smoke behind the football stands or hang out at the mall. They don’t read books their parents would clutch their pearls at. They don’t read dark and macabre shit like Edgar Allen Poe and Stephen King. They don’t dye their hair black and take selfies licking knives or lying on train tracks with black and white filters over them. They don’t let their nail polish chip and let their vans get scuffed, and steal their parents’ liquor and shoplift from the drug store after school or loiter around stores until managers kick them out. They don’t steal each others boyfriends or get in screaming matches in the middle of the hallway. They don’t rebel in anyway that isn’t hyper consumeristic (Sephora kids) or melting down over not having their iPads.

And so they all have to be commercial. Bright eyed and marketable so brands will pick them to push their useless products. And this has trickled into celebrity culture too. Where are the rebellious nepo babies like the Osborne siblings with their filthy mouths and regular looking bodies in a sea of Hollywood skinny celebs? Where are the Pinks singing about not wanting to be a stupid girl? Where are the Ciaras with a tomboyish style so they can DANCE (other than twerking)? Fuck even Jeffree Star (MySpace era; not yt era) had an appeal at one point because he was an androgynous man with bright neon pink hair and eyebrows with emo makeup and styling.

This lack of rebellion means everyone gets in the industry and just falls in line. Fuck a rebel. A REAL rebel (if one of you mention that white girl from the Midwest with constant foot in mouth syndrome I will smite you with the power of 2000s linkin park, my chemical romance, and limp bizkit istg); everyone just has to be perfectly commercial. It’s why ice blew up despite being incredibly untalented.

And it’s why these girls enter the industry and just immediately be like “oooh lemme get plastic surgery so I can look like every other bbl having ig model/baddie these niggas wanna fuck; that’ll sell records!” Which is insane because female rappers marketing to women over marketing to men will go a LOT farther. So who are you doing it for? And don’t say yourself because you would love yourself if someone didn’t tell you not to. So who told you and why are you listening to them instead of going “you know what? I’m good as I am. Fuck you, I ain’t changing for a hater.” Yall rapping about opps and fucking getting cut open and starving and working out like crazy and taking ozempic and lying about it just to what? Hope some nigga in the industry will collab with you?

Ain’t no way fucking with fake tits and ass feels good. Ain’t no way that nose job helping you with your breath control. No way them veneers helping you eat better. Like be for real. The industry/society told you to conform and you did like sheep. It’s so hard to take the boss bitch/I’m that girl messages to heart when I don’t believe you. If someone told you you laughed weird, you’d change it. Someone told you a certain color looked bad on you, you’d stop wearing it. Someone says they hate your natural hair, you become addicted to the buss downs.

You’re literal sheep. Shepherd says go here and you say baa baa shepherd say less.

And then if someone calls this behavior out, people want to fight to the death for their right to conform to what society says without question. Fight to the death for their god given American right to buy products they don’t need and cosmetic surgeries they don’t need (and don’t know the long term effects and consequences of) with the lie of “I’m doing it for myself.”

No desire to redefine beauty standards by daring to be different. No interest in questioning why we as women are expected to do all this while men aren’t. Head empty other than a repeating mantra of how it’s for you, and there’s nothing wrong with wanting to spend thousands of dollars radically and fundamentally changing how you look. It’s totally not self hatred to the highest degree that you should be spending those thousands on therapy unpacking instead of plastic surgery. None of it. Just a dread of feeling like you HAVE to do it, it’s “maintenance,” but yet don’t question why you feel you HAVE to do it.

I need real rebels in music again. Tired of all the perfectly curated, well manicured, conformists masquerading as revolutionary. I need heavy metal and pop rock and messy hair and super thick eyeliner and girls wearing leather jackets over baggy tripp pants and band shirts back. I need rebellion back. I need girls who are willing to fight back against standards and say fuck you to anyone expecting them to change. I need the women who would gag at the idea of conforming to be like Britney back. I need the women rapping about Escalades (the Bentleys the hummers the Benz) instead of sucking dick and their fat asses. Give me Gwen Stefani and her Alice in wonderland esthetic trying to motivate herself talking about whatcha waiting for! Give me Ciara talking about sometimes I wish I could act like a boy. Give me Hayley screaming once a whore you’re nothing more I’m sorry that’ll never change. Give me a rock band singing so darken your clothes and strike a violent pose about the youth.

Fucking give me REBELLION. I need these modern girls to fucking get off their knees AND STAND THE FUCK UP.

[overreactingatagasstation]

Notes App Group Therapy

Hi, um—

my name is…

well, actually, I have no idea.

(And why did I nearly say Slim Shady? Idk, felt like a reflex.)

I was born 12 minutes ago,

somewhere between a depressive episode

and a Bright Eyes playlist—

and then I was left here

in the fucking Notes app,

like it’s some kind of safe haven

for malevolent lyricism.

Like, what am I supposed to do here?

Start a cult? Join an MLM?

Wait—same thing.

My bad.

I’ll do a wraparound on that one.

Point is:

I didn’t ask to be brought into this world.

I’m two stanzas old

and already on the verge of an identity crisis.

Oh my gods—

I’m a Scorpio moon, aren’t I?

Anyway, here’s the gang.

We’re all traumatized,

which is kind of ironic

if you really think about it.

That’s Villanelle over there.

He’s got a white-knuckle grip on a handle of whiskey,

And only knows two lines—

Says he’s suffering from imposter syndrome—

but clearly, he’s just on the spectrum.

We hyper-fixate on Golden Girls together sometimes.

Love u, bro.

The frost monarch in the corner

giving off misandry-but-make-it-holy energy?

That’s Sonnet.

She’s kind of afraid of intimacy.

Give her space,

don’t ask too many questions,

and she’ll let you practice grounding exercises

within six feet of her.

COVID was really her prime.

The used-to-be-a-theatre-kid-turned-anime-apologist?

That’s Prose.

He likes to cry into his gojo body pillow and hoard all the good snacks.

PLEASE don’t mention Attack on Titan,

or we’ll all have to sit through his TED Talk

on why Armin “gets no bitches”

Again.

(I’ve got the footage. It kinda eats.)

Anyway, I don’t know if we’re gonna, like,

practice trust falls?

Read The Bell Jar?

Maybe form an obscure zine

or start a polyamorous writer’s co-op,

if we’re feeling some type of way.

I’m glad I showed up—

even if I’m mostly just overextended metaphor

and an Ariana Grande chorus

In your IG story ex-boyfriend-trap.

(Babe you know it. He knows it.

His mom knows it.)

We’re glad you’re too.

Getting locked up in the existential slammer

is a lot more fun when it reads like a sleepover.

And we can cuddle if you want.

[literaturereviewhelp]

Asthma is an inflammatory disease of the airways that causes narrowing of the airways causing to obstruction of airflow leading to symptoms such as wheezing, dyspnoea, chest tightness and coughing. Asthma affects the quality of life of the patients and is and is an economic burden to the families due to medical expenses and hospitalisations. Asthma is prevalent in westernised environments as compared to rural areas. Aims and objectives: To identify ways in which asthma can be caused, its pathophysiology, prognosis, epidemiology, signs and symptoms, diagnosis, treatment, prevention and management. Proper management of the disease will enable patients live a better quality of life with fewer hospitalisations. Keywords: Asthma, allergens, inflammation, wheezing Introduction Asthma is an episodic and chronic inflammatory disease of the small airways of the lungs, characterised by intermittent airway narrowing and airflow obstruction that leads to symptoms of recurrent episodes of wheezing and shortness of breath, chest tightness and coughing particularly at night and early in the morning. (Goyal & Agrawal, 2013) It causes a heavy economic burden on patients, their families and the healthcare system. It is a burden to low-income earners due to medical and drug costs. Asthma patients experience missed school or work days, medical expenses and even premature death therefore influencing their quality of life. Knowledge about the disease and its predisposing causes for development would help researchers to better target future therapies. (Bollmeier, 2013) Pathophysiology Asthma is a complex syndrome characterised by airway hyper-responsiveness and is caused by a multicellular inflammatory reaction that leads to airway obstruction. Inflammatory and cellular infiltration of the airways is by recruitment and activation of mast cells, macrophages, antigen presenting dendritic cells, neutrophils, eosinophils and T lymphocytes. The major role in the activation of the immune system that leads to the release of many mediators such as interleukins and granulocyte macrophage colony stimulating factor is by type 2 T helper cells. Cells and tissues in asthmatics are prone to inflammatory reactions against normally harmless substances. This inflammation can cause swelling, mucous production leading to airway narrowing. Air narrowing leads to asthma triggering symptoms. Exposure to substances that trigger reactions on the airways lead to production of IgE antibodies that help release of inflammatory mediators such as histamine and leukotrienes. These mediators cause the airway of the smooth muscles to contract. Some mediators activate B lymphocytes to produce immunoglobulin E (IgE) while others are related to eosinophilic bronchitis, neutrophilic infiltration of the airway and a pauci-granulocytopenic type of inflammation. This persistent inflammation results in airway remodelling which includes increased deposition of extracellular proteins, smooth muscle hypertrophy and hyperplasia and increased goblet cells. This leads to the epithelium being fragile and thin and the epithelial basement membrane thickens. There would be increased mucus production and endothelial leakage which leads to mucosal oedema. Mediator induced abnormalities in the parasympathetic and non-cholinergic nervous system may lead to increased bronchial hyper responsiveness. (Al-Moamary, et al., 2012) In places with extremely clean household environments and fewer circulating infectious diseases have higher incidences and prevalence of asthma meaning the immune system is not challenged. The developing immune system shifts the balance between equal parts of T-helper (Th) cells type 1 and type 2. The lack of exposure bacteria shifts the immune system toward a Th 2 cell mediated immunity. The shift favours the development of allergic disorders including asthma because Th 2 cells produce interleukins that contribute to atopy through immunoglobulin E production. Read the full article

[twinkl22004]

"Hyper-IgE Syndrome", Victor McKusick, Mendelian Inheritance in Man, 1966. 高免疫球蛋白E綜合徵。(HIES1).

Here I present: “Hyper-IgE Syndrome“, Victor McKusick, Mendelian Inheritance in Man’, 1966. 高免疫球蛋白E綜合徵。(HIES1). INTRODUCTION. Hyper-IgE syndrome type-1 with recurrent  infections (HIES1) is an autosomal dominant immunologic disorder characterized by chronic eczema (atopy), recurrent Staphylococcal infections, increased serum IgE, and eosinophilia. Other more variable immunologic abnormalities…

[johnny-appleachia]

heart stuff update!

might be Pots (Postural orthostatic tachycardia syndrome), or hypo/hyper-thyroidism

getting lab work done tomorrow

ehm

lets go ig?? :D

felt lightheaded this morning, and leaning more on the POTS side of things imo rn. We'll find out more later this week :/

[dannyketch]

Reading about severe penicillin allergies again to trigger myself I guess. I do this sometimes, and it's come up a bit lately. "If you feel impending doom call 9-1-1" Yeah 😔 also girl I was actively dying and then they told me that I had a tumor too. Omg. It was a benign dermoid cyst one, but all they said was tumor at first, plus again actively dying. I couldn't even keep down water. I think that was the scariest part. A lot of scary parts. But not being able to drink water very up there. The hypotension + fast heart rate was probably the 2nd scariest thing. I did have to go on an ambulance. I did like when they pushed me around in a chair to get testing later on, and the nurses were all very nice. So that almost makes up for the fact that they didn't figure out what was wrong with me until having to be hospitalized a 2nd time, and to be fair they thought I had scarlet fever because I thought I had scarlet fever because I got lied to in a clinic. I had hives because my cat scratched me and I had uncontrolled allergies. I never had hives before and that clinic lied about doing a strep test. So I'm honestly lucky one of the doctors had a patient the week before who had Hyper-IgE syndrome, because the doctor thinking of testing my IgE was what got them to realize it was an allergic reaction and not scarlet fever. So that person doesn't know it, but they probably saved my life. That is a very hard disorder to live with, but I wish them well wherever they are.

[enigmasalad]

I want to reblog with my experience cause seeing these things horrify me and I am so grateful with the way my mother has handled stuff with medical stuff.

So a bit of Info, I have a rare autoimmune disorder called hyper IGE, aka Jobs syndrome. Growing up Hyper IGE didn’t have a lot of studies and info until my mid to late teens. So basically age 2-16 my mother was told I was going to not live to thirty. However we found out in my mid to late teens that I have the kind that you don’t die early. So for a big chunk of my life my mom was told one of her kids was gonna be gone before thirty, so you’d think she’d be intense when it came to medical stuff.

She wasn’t unless it was defending me or getting me the help she needed.

With hyper IGE comes skin issues, including insanely thick skin that’s seen as “scarred skin” despite it not being scars. When I get blood work I have to have an ultrasound on my veins because 9/10 medical professionals can’t find a vein. I’m usually stuck 4 to 5 times before people give up or find something.

When I was 2 (I don’t remember any of this btw I was 2 for goodness sake), a pediatric nurse at a hospital where I was getting lab work done was angry and she squeezed my face and shouted at me while trying to stick me. My mom lost it and went mama bear and got me out of there while telling the other doctors and medical professionals what happened.

My mom after that had always been supportive whenever I felt discomfort with bloodwork and needles and after four sticks she always let me call it quits and we try again another time, or until the doctors got something to numb it.

She also was always supportive whenever I got vaccines and medicine via injection. She would hold my hand whenever I wanted it or she would try to distract me and sometimes made me laugh cause I was a weirdo who had to watch the doctors put it in me.

One time in third grade I got really bad strep and we went to the doctors as a last ditch effort before I would have to be admitted to a hospital. I wasn’t eating, drinking or sleeping so my mom was willing to try whatever. The only thing they could do (and it worked) was give me an injection. I, being a child and the sickest I’ve ever been (traditional sick that is), was throwing a massive fit as a sick kid could throw. I was refusing the injection . My mom explained that I could take this one injection and get some orange Powerade and start to feel better, or I’d be in the hospital getting a lot of injectable medicine (don’t know how medically accurate that is) and have an IV (which I had trauma from and still do from an allergic reaction to eggs in kindergarten) in my arm. I decided to take the injection and of course I got better.

I still hate injections and blood work, but because of my family’s patience with me and this, I am at least able to get it somewhat done.

Patience and explanation does wonders. Trust me. Kids brains are small and still developing but they aren’t stupid. If they see the logic behind something in their own kid way, most times they stand behind it. Or at the very least voice when they’re uncomfortable and why it makes them uncomfortable.

It’s not worth it to traumatize a child or not respect their bodily autonomy over.

Also on topic of Consent: whenever somebody says "Kids should have bodily autonomy!" some guy always is like "You are too unrealistic. What will you do when a kid is seeing the doctor and doesn't want to get a shot? Would you just let them refuse the shot?"

Yeah I probably would. You're straight up asking the wrong person if you want the nice normal answer here. Doctors and nurses forcibly doing (relatively routine) things to my body against my protests when I was a small kid fucked me up so bad that as an adult anything medical related is a huge trigger for me, I've had persistent intrusive thoughts and recurring nightmares about medical procedures, and I can't have even the most basic tests and health checks done on top of it.

I hate talking about it because I can't get comfortable calling it "trauma" and I don't have any other words that are useful, but it's made my life so much harder and really scary since if I start having a weird symptom, there's nothing I can move myself to do about it.

I figured out a loophole where going to a pharmacy instead of a doctor's office for vaccines reduces some of the stress, but I was still in stress and misery for days before I went to get my tetanus shot. The repulsion is so intense it feels like I literally don't have control over myself, it feels like I can't make appointments or plans about such things out of my own free will, and so every year I have guilt guilt guilt guilt guilt about how I should get the flu shot, and it does nothing but ineffectually hurt me.

Vaccines save lives and all that, but when it comes right down to it, I don't think it's actually a net benefit to public health to give any percentage of kids lifelong psychological scars so deep and painful they're almost completely barred from accessing health care as adults.

I know I'm not the only one, far from it.

[myadhdbot]

tldr: nothing important

just knowing you might have adhd without the official diagnosis, and no means to even get one bc where you live in doesn't take mental health seriously, is so frustrating.

i relate to most of the adhd behaviours described online. i cannot regulate my attention. my recent hyper-fixation lasted almost an entire semester and i barely scraped through all the other subjects other than the ones i was really interested in. i also lose focus easily in class unless I'm writing every word they say down. executive dysfunction is an everyday thing. i cannot stop scrolling on the internet even though i mentally list all the better things i could be doing rather than waste time every 10-15 minutes. I'm easily bored and have had meltdowns in the past so yes i 98% think i have adhd probably a bit of anxiety as well.

but without the official diagnosis my imposter syndrome makes it so difficult to live guilt free. theres always stupid thoughts in my head saying if I'm just exaggerating things (i know I'm not) but it's so hard to shut down the voice and i go into a spiral thinking if I'm just being lazy, not working hard enough to get things done on time, not trying to remember important schedules or assignments, not trying complete my assignments or homeworks or reading until the very last minute.

my issues with memory also make it incredibly hard to recall anything other than some specific instances of my childhood and everybody (esp my mom) remembers a different version of me bc i lived in a boarding school from 11-16(until covid) and i was extremely high functioning. i used to ace tests without having to read too much and my boarding school had a very strict routine that made it easy bc i knew what i was supposed to do every minute of the day but when 11th grade came around everything changed even though i was still in the same boarding setup. i suddenly didnt do well in tests bc i hadn't needed to until then. so i don't know who i was, i don't know who i am or who I'm supposed to be.

i did nothing productive during the covid year couldn't concentrate in class. i read hp fanfics all day. i couldn't even read new books, or watch tv shows or pick up a hobby or learn a language (which is an interest of mine), nothing other than reading about the same people fall for each other in a thousand different au's. this was a very important stage in my student life and i didn't give university exams properly. i can't regret it bc i don't even think about it. i don't think about anything concrete but my mind is always busy.

(i don't even know where i was going with this. does this qualify as trauma dump?)

i see people with the same problems on the internet and it does relieve me to a certain extent but there's always doubt clawing at me. also bc in just 2 years I've to get a job and i hear how office spaces are not accomodating enough for nd folks and it's scary. i also don't really like the job profile very much but it's also bc i have no real direction in life. i dream about having a book cafe but it's not sustainable nor fair to my family ig.

sundays are not fun when you're in an existential crisis (if this even qualifies as one) and i have homework to do that I could've done anytime between the last 30 hours which I've procrastinated against doing until now.

[exeggcute]

this is a long shot but does anyone have experience with genetic counseling but like, telemedicine style? there are literally no geneticists in my area (the rheumatologist I saw a few weeks ago was like oh yeah people always ask and I tell them they'll have to travel out of state... which obviously is not gonna happen right now) but there's gotta be some way I can send in a sample and do a virtual visit, right?

oh also important disclaimer, like from an actual licensed medical doctor. none of this theranos knockoff shit lol

[vhsrights]

ANOTHER JEMILY THOUGHT

Being a human is fucking exhausting some times, and Emily and JJ definitely feel that.

 Emily feels that when she gets stuck in her head. Having your thoughts run around in frenzy for hours on end is not fun. She always tries to push it off but they find ways to subconsciously manifest. Somedays it’s her insecurities and worries that surface. On those days, her hands shake a little more and she makes sure to hold back whatever she does. Emily tunes herself down and watches everyone around her religiously. On other days, it’s simply the sheer energy and amount of thoughts in her head. They move so fast that she can barely keep up and it leaves her confused and frazzled. But, Emily would never let that show, upfront at least. Then, she makes sure to bustle around more than normal. She doesn’t stop to make the little conversations that she usually does, fearing that if she stops everything will spill out and she will shut down. She will stim constantly, rubbing her hands up and down her legs to feel the fabric and ground herself. Emily will also consistently shake her fingers or her pen to try and hide how much her head is getting to her. Over time, JJ learns to pick up her exhaustion, and can tell by the way Emily greets people in the morning or pours her coffee. (let me explain) Normally, Emily is an Americano kind of girl with more coffee and barely any additives. However, when she’s having an insecurity brain day she adds a shit ton of sugar. The sugar is jarring and gives her something to focus on (no matter how much she hates it). When she’s having a brain overload day, she adds a lot of milk to get her the caffeine she needs for the day but dulling its taste so she can like ground herself and not get too hyper. Both of these kinds of days make Emily want to shut off her brain, but only around JJ. Her guard is still high enough that she just collapses on JJ when they get home. JJ has to move her around so that she can just hold her on the couch. Eventually Emily will slowly open up again, but she typically needs 12 hours to recuperate so she just keeps JJ close and kisses her several times (just to remind herself how much she loves her gf and that JJ is always there to help her) JJ will cook a simple meal or order in Chinese takeout and they “watch” Russian/other foreign movies on a loop until Emily falls asleep in JJ’s cradle hold. (don’t worry she carries her up to bed)

JJ is a little different. She succumbs more to the pressures of work, rather than the bustle of her head. Her job busies her head typically, not giving her time to dole on her insecurities and other thoughts. However, her job is a lot. JJ is not only a profiler, but also the one team member that seems to be consistently rational. Jennifer is like everyone’s impulse control and reality check rolled into one. Every anchor does need to be pulled up from time to time, as does JJ. The pressure of keeping her team together is enough to nearly crush her sometimes and JJ hates it. She hates that she needs to ask for help and she hates the fact that sometimes she can’t handle everything on her own. Well, there is one person that she trusts to hold her up, Emily. JJ likes to hide herself away when her brain begins to act up. She avoids showing her face out of her office and turns off her lights. JJ likes to work by the light of her small desk lamp because it helps to reduce her world to just what she can see. Some days she puts her cases to the side and takes out the most mundane thing she can find to do. Sometimes, it’s as little as signing her name on files and leaving the rest blank for later. Having that small sense of accomplishment helps to tame her imposter syndrome and give her some peace. On the outside, JJ is overly nice. She never lets her exterior crack, going out of her way to do things for others to allow herself to stack her lists full. She’ll offer to run out multiple times for the office’s Coffee, she’ll help reorganize someones desk, or she’ll go to Garcia and help her with her newest set of trinkets. Emily can see when she’s overexerting herself and learns to step in. JJ is hesitant in the beginning, but eventually follows Emily’s command. Emily will simply text her and ask her a scale of 1-10, to describe how bad it is and tailor a plan according to that. On more mild days, she takes JJ home and helps her to work out the nervous energy whether it be dancing, moving around in the kitchen, an actual workout (Emily’s not the most fond of those), or a workout. On more severe days, Emily takes JJ and sits her down in a cuddle on the couch. She makes sure to repeat and go over all of the things that JJ has done to help others, herself especially, supplementing her sweet words with gentle massages and brain kisses. JJ is sometimes resistant but often times Emily will switch to another language that JJ can’t respond in and continue. JJ can take any amount of time up to a full 2 days to get back to normal, seeing as for her it is less frequent but more draining. She always makes sure to thank Emily by either tapping thrice on her blackbird tattoo, or tracing star somewhere on Emily. 

This may not be the most accurate but like yk it’s my HC so :) enjoy ig

[oblivion1990]

Living with hyper mobility syndrome within Ehlers danlos spectrum.

Warning, rant coming.

WTF am I suppose to do about a hopeless situation. I have done everything I can to cope with my illness. And I´m not talking about the mental health bit because that is not the core issue. 

I have been diagnosed with eHEDS, or the hypermobility type of Ehlers- danlos syndrome. I got my diagnose september 25 2020 after struggling my whole life with things that seems so easy for other people. 

For people who ask, I describe; Imagine a full grown human having 10 beans in a jar. Those beans are energy you have to take from during your whole day. Some days you may just use 8 of those beans. And can use up the rest the day after. 

One bean represent a certain amount of energy for ex, getting out of bed and eating you breakfast. Two more of those beans and you getting ready for your day at work and getting to your actual workplace. The energy of getting in your car and drivning through busy traffic and stressed people. One more bean maybe required if you choose to walk there, or take the bike. 

Continuing. All this is now 3 beans of energy. Getting through a whole day of full time work, you may need 3-4 more beans, depending on what you are doing. (Office or more physical). When your day is done you have “consumed” 6 of those beans. 

Going home from work, again driving or walking/bike, you come home cooking dinner and enjoy social time with your family may take 2 more beans of your energy. After a “normal” day you may have 1 or two beans left to use the coming day after a good nights sleep. Where your 10 beans charge over night. 

_________

Now, instead of having 10 beans in the jar like a “normal” adult, you have only 5 beans of energy to begin with. No they are not bigger och charged with 10 beans of capacity. They are only loaded with the same amount of energy BUT they have to last as long as the normal 10 beans. 

Impossible?! 

Yeah and this is the life of a human with Ehlers Danlos Syndrome with/or hyper mobility syndrome. The constant fatigue that stopping us from feeling normal. Add some joint pain on that and you have to use more beans (energy) to get through your day.

At the same time we are expected to do the same amount of work like a 10- bean person because we don´t look sick. Well, we cant “see” cancer until the human are actually dying or going through chemo therapy. 

So why should we be treated differently? Apparently our sickness does not count. No, we´re not gonna die from it but it is still a constant battle that is impossible for healthy people to understand. 

I have dreams, I went to university for 6 years. I have a masters degree in archaeology and I will probably never be able to work full time digging or even sitting down doing desk work (fulltime) even if I wanted to. I only have 5 beans of energy to take from so maybe with pauses and no stress from the outside dealing with to much people, I may be able to work 6 h a day. But that is all I can do without having a social life, or doing normal things like, working out. 

Basically, the day I a workout I (2-3 times a week because it is necessary for my body) can´t really do anything else, if I do that I crash the next day and I´ll have to sleep and rest. I am unemployed because of the pandemic and I cant take any job. I have tried many times but I feel terrible and all I do is sleep on my days off.

Fun life?! No....and to be realistic, no company will probably ever want to hire me because I don´t have the full capacity to work a normal 8 h day. Be alert, have brilliant ideas and keep a lot of things in the air at the same time while being nice.

Right now I´m waiting on my contact at the employment agency to find a job that suits me. It will most likely not be within the archaeology field at all. It´s hard enough to do without any illness.

My big dream is actually to work as a forensic artist and/or create facial reconstructions within the history/anthropology field. I have an account on IG where I´ve done some sculpting work but it is only a hobby at this point. 

https://www.instagram.com/creativerecon90/

I really wish I could make a career of it since I have a shit ton of debs from my studies. 

I live in Sweden and there is so much the doctors don´t know about Ehlers- Danlos Syndrome. Most of them have never heard of it at all. I end up telling them all the facts. And also, every person is different. For me it´s the constant fatigue and brain fog.

Also, even if I wanted I can´t put all of this in my CV. Well I could but it would probably ruin any chance of getting work. 

I just want to live a decent life and be happy. Everyone with this illness want to be heard and we need a change in how people treat us. 

We do all we can but to no avail

Feel free to share this post because I want to raise awareness to this invisible illness and I want to follow my dreams despite what I have to deal with.