#and without a diagnosis theres not much that can be done but also even with a diagnosis theres nothing
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flatmate has a girl over i am suddenly extremely uncomfortable
#sorry i only ever come here to rant its bc im losing all my interests / passions and always need someone to talk to but have no friends 🤪#negative cw#thats a lie partially in that i am emotionally incapable of talking ab it i just. i have no people i have no outlet#but tumblr hasnt been doing it for me lately. im not sure if jts#its the mental illness or if its just being full time employed leaves me so burned out that i can barely function#so hobbies just become non existent#doesnt really matter either way tho bc i can barely pay my bills on full time wages theres nothing i can do to fix things#time off or less hours isnt an option and i sont have the money to get anything diagnosed#i think i need. a lot of support ive been kinda rawdogging life for 26 years but ill be honest gang its starting to really impact everything#i do not. feel like i am a fully functioning human. i am not capable of being a functional adult in society#but its also like. i have to be#my parents dont really believe in mental health stuff or autism or anything and certainly wouldnt believe if i tried to say i was disabled#its just like. no one ever believes me ab that kinda stuff and i dont have the money to get it diagnosed#and without a diagnosis theres not much that can be done but also even with a diagnosis theres nothing#government disability allowance is $78 a week maximum and only covers specifically medical costs for that disability#like i genuinely feel on the verge of a breakdown so bad that i would need a care person#but alas. thats just literally never a possibility for me#i dont have money and i dont come from money and i will be forced to work full time through breakdowns until i die#there is nothing that can be done to help me or fix me#and that just. it sucks#anyway#hope this girl is nice bc my cat refuses to be in my room and its giving me anxiety bc what if hes scared of her and runs away#2 much going on in my head but i can not stop it so here we are#sorry y'all r my rant place#i have been thinking ab trying to step away from the internet a bit but its also.#not really a thing i can do bc everything costs money these days#social clubs r barely existent and the ones there are cost a shittone#I'd just. I'd like to be in a better place. I just don't know how to get there
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i guess my question is, is it possible to not be diagnosed as a medium-support autistic person until into adulthood? (early twenties). i attended public school, doctor's appointments, all that, and would they have forced my family to get a diagnosis if they suspected?
(This is part two of two seperate asks for people who are confused )
For the second question, I think there's only very limited circumstances where someone could be "forced" into a diagnosis by someone who isnt parents. Depends on country and some other things but most likely parents have the last say in medical treatment of kids including diagnostics. So that's the "could". But let's say they could, would they have done it?
Its complicated, theres racial bias, gender bias, neither of which disappears when someone is MSN or higher. They might've suggested other diagnoses, or dismissed it and blamed it on "badly raised" etc. It coudlve happened but I'm not too confident in that working out a lot.
a lot of people in positions of "should point out the need for diagnostics" (teachers, pediatricians, ...) arent actually very educated on autism at all. For example my mother worked in childcare for over 20 years before being given training on autism in the 2010s, before that she knew basically not any more than the average person (so like, next to nothing...). A lot of what could point to autism will get treated as "personality problems" or something by teachers, even more disruptive and negative things. And a doctor for example might not really see much of what's going on regarding need for prompting with tasks because it's not like you eat or shower at the doctors office.
Now again I'm not gonna say you are / arent MSN based on that very short description in the first ask you send but you can theoretically go undiagnosed like your whole life while having MSN? Its definitely not as common for obvious reasons but yeah. Not applicable to you I think but for example Theres still countries out there that barely do autism diagnostics, or people who cant afford to take their kids to get a diagnosis, ...
I also dont really know how to get my thoughts across right now but yeah. To be honest i'm not really sure how one would make it through school w MSN without any extra help as It was basically impossible for me, but maybe with a different set up it mightve worked out enough for me to just sort of, slide through with many struggles? Idk. That's the one thing that does trip me up. But I don't really like to do hard black and white rules so I suppose it's possible though unlikely.
#asks#anon#tbf today isnt the best day to try to answer this#its basically an AAC only day which usually means my language isnt languaging anyways. like sorting thoughts for points bla#very long way to explain why i think the answer is yes. so yeah. uh. here u go.#this took me like 30 minutes oof
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hi cas, reg kin anon back
so, ive looked into it a little but i couldnt find any information online about whether my uni could offer free counselling/support when i get there, so its something i think ill just have to ask about once i actually get there.
which... is in three days. i move out on wednesday 11th, and its absolutely terrifying how soon that is. i feel so underprepared and i hate feeling like that because im the type of person to have multiple backup plans, i always check ahead of time about everything, i was that kid who used to make sure they knew everything they needed to if they got in a car accident or whatever. i was *prepared*, and now suddenly im moving out in three days and havent a clue what im doing.
its also so overwhelming trying to do anything. ive tried making lists to help but even that isnt working, and im so afraid i wont be prepared to go. i dont understand how anyone can be okay with anything anymore. i honestly cant believe i ever wished so badly to be an adult because its the most stressful, frustrating, and terrifying thing ever — and ive not even hit the tip of the iceberg yet, im well aware.
so far ive packed dry foods i bought beforehand (because ive no fucking clue where the food shops are where im moving, or how far they will be, or how easy itll be to trnasport shopping etc, so i figured it would be easier to bring anything i could so that id be set for a day or two at least), and thats about it. i cant pack clothes until the day before, and i cant pack toiletries until just before since ill still be using them, and im not packing all the stuff i bought in earlier asks (bedding, towels etc) until im packing clothes, because right now *theyre* all in my suitcase and theres no point taking them out and taking up more space with them until the clothes need to go in instead. i need to pack my plates and cups and such but i dont have any boxes and my father was supposed to get me some but hes done fuck all this past week and its really stressing me out.
is moving always this stressful or am i just overthinking everything? i feel like i never feel correctly about anything in life (ive had severe anxiety for longer than i can remember which really doesnt help) so i cant tell if im just being dramatic about it or if its actually normal to be so stressed about something that everyone does. would it be easier or more difficult without my mother's diagnosis? i dont know that she'd have helped much anyway, honestly, but still i cant help wondering. do people in normal families find it this difficult or is it calmer?
Hi!!!
Well by the time you read this you'll have moved!
Honestly, there's no real way to be completely prepared. You're gonna forget something, something will go wrong, and part of adulthood is just knowing that things go wrong and it's okay. It'll be okay, and you can figure it out, I promise.
Would it be easier if things were normal? Probably. But moving is still stressful no matter what. I promise you, everyone is stressed about this, and everyone is going to forget something and make mistakes. The most important thing is to find people to rely on, so when you make a mistake, you have people to help, you know? Adulthood is really just calling someone up and saying "I fucked up" and then as soon as you figure it out, someone calls you and says the same.
It'll be okay <3 I'm sending so much love.
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not going to comment on the ramcoa stuff? yeah thought not.
Crazy how I have a life and a job and didn't give a shit to respond to u when I'm busy n only scrolly tumblr idly but since u clearly got a thing for me ill bite cause you also need my opinions reexplained to you like a child
Also I googled ramcoa cause I didn’t know what that word means (i also didnt know what endo meant till like earlier this fuckin year cause everyone was being very loud and annoying about it) and all I got was "RAMCOA is an acronym for Ritual Abuse, Mind Control, and Organized Abuse." which like. what the FUCK are you even talking about mind control? fucking ORGANIZED ABUSE this is like classic cult aligned shit how does this even relevant to endos and that stuff. please tell me this is a word or acronym for something else that google isnt telling me cause just genuinely huh
listen i took a look at the link u sent i dont wanna post that cause i dont want ppl harassing others on the internet like you seem to want but just for the love of fuck listen to me for two seconds like honest to god read my words and let them sink in
the post you sent me i have literally no context for to me it looks like a shit post. ive made jokes like that before and i need to reiterate that they are JOKES and i am NOT ENDO and i say shit for goofs cause to me and my friends its funny. whether it is or is not a joke is, honestly, not my business. I dont know that person personally i dont know their life i dont know their story so i dont set it as my mission to find people i dont agree with and flip my shit at them. again. life. job. no interest. im 24 and literally not my job to babysit other ppl on the internet i block who i dont like follow who i do and live on w my life (which. highly recommended for all. you too Chuck. makes life so much more livable)
in regards to ur stuff about misinformation the way I see it is people will spread bullshit about just about every topic under the sun. it is, once again, not my job to go around "um actually" everything on the internet. if someone asks me a question i answer if someone im directly talking to has wrong information i try to correct them
When it comes to a lot of people, however, not many of them want to change their minds on things. sometimes some people arent even at a point of their life to be open minded and listen. which, im not gonna stress myself out to correct someone else. Even i had a point in my life where i was so hardheaded and full of hate (it was a weird cringe culture group i was in and didnt think for myself and honestly i caused a lot of damage in that time of my life and even now I regret it. But man thats life. And like if i try to correct and if they dont listen i go okay and dip after a point (which, for you. is prob gonna be here. cause im gonna say all my thoughts here and be done with this conversation honestly also work is suuuuuper busy rn like fr wish me luck w this summer season sobs) theres a part of me that hopes you will either see reason with this reply and chill out or you will continue to disagree with me but at least for both of our sanity stop messaging me either way i wont be replying again to you just so you are aware
now im just gonna be so fucking blunt here. do i believe endo is a thing? (ie: people can be systems without trauma) honestly? i dont know! here is how i see it; im not a medical professional. I have an interest in psychology i have a copy of the dsm5 cause im a nerd (its with my law books. again. im a nerd.) but im no scientist. at the same time; i dont really trust medical professionals all that much? i would like to. really i would. but it always feels like so many of them dont take the time to actually try with diagnosis. too many people of color or fat people and shit like that always say that they are constantly misdiagnosed or ignored due to predigests. again, because i was born a girl i was never diagnosed properly when i was a kid. this happened twice actually! and even then ive had to deal with doctors and therapists who dont believe me even WITH a formal diagnosis to my name. ive had a therapist tell me that i DIDNT have bpd because i was, in her words, "too nice" and she refused to start me on cbd insisting the doctor was wrong. its scary as fuck honestly. plus, like i said in the last post, mental health is so under researched. which is also so scary to me. theres so much that doctors dont know. that WE dont know. theres so much that doctors get wrong. sometimes cause theyre only human and sometimes cause they willfully ignore patients.
so, the way i see it, is that maybe you can have a system without trauma or maybe you cant. i dont know personally and where i stand i dont know how much credit i would put to research done on a mental disability that is still to this day so disgustingly stigmatized and viewed as dangerous or scary. ive seen split. i know david haller (i like david haller but also every time i think about the live action show or how they really treat him as a character i sob in my little heart every fuckin day man fr) so to me i chalk it up to 'fuck if i know' and move on.
The other thing is that since i personally am not an endo in my head i also have no evidence to form a hard opinion on this at all. Again, my system DID come from trauma. In fact, for most of the system mates i can pinpoint exactly which traumas and/or parts of my life they came from (some i dont but i am also pretty sure im missing a very large chunk of my middle school memories so who the fuck knows) but honestly. if you have a hard opinion on the yes or no here thats fine youre intitled to your own opinion ig
but you shouldnt harass people on the internet or accuse them of being fake. this is what my problem is with anti-endos.
This has also been my like, whole side of this conversation. Which is why im really begging you to listen and read my words cause i very much think you are reading me wrong here. I literally couldnt give less of a shit about your personal opinion on this kinda stuff. Like i dont know you were not friends you’re a random anon on the internet. You disagreeing with me does not phase me one bit. I clearly have stuff to say but thats just cause i talk a lot and like to share my thoughts more than anything else. Honestly. You can send me a like one sentence question and ill accidentally reply with an essay. Have you SEEN the rants ive been on lmaooo
What does frustrate me, is that you feel the need to harass people and accuse people of faking stuff for attention with NO fucking thought. When you sent your first anon i can only assume its cause i reblogged my friend Wendy’s post about endos and syscourse (i hate syscourse so much but MAN that is a good fucking play on words it almost makes me mad lol) you asked if i had did/osdd and i said yes and you IMMEDIATELY went into my asks and accused me of being 1) an endo and 2) faking for attention despite that neither of those can be inferred by my answer especially when i 1) never once said I WAS endo personally (because. Again. Not) and 2) i specifically explained in my first response (thinking u were just a good natured random) that while, yes, i am a system, i dont talk about it very openly or much at all only vaguely mentioning it here n there on my personal blog when i feel the need or want on a specific topic (like when i made a joke post about being a system and watching RvB and the Meta who is this character that has a buncha AI crammed in his head). If anything, it makes you more fuckin wrong cause me NOT mentioning being a system almost ever shows more to the light that im NOT focusing on wanting attention or shit like that if anything i think i make more jokes about being autistic and trans. Are you gonna accuse me of being fake trans and fake autistic just for attention? Because i talk about it more? No, cause that would make like zero sense. (Unless u want to ig tho honestly i think being called a fake trans would be so funny as anon hate like genuinely that would make me snort i think. Guy who uses he/him and openly talks about having periods and shit like that accused as fake trans rguireghrhuigr)
To me, at least, you have already proven that your ideology is flawed. Your method of pointing out ‘fakes’ and ‘attention seekers’ is just really nonsensical. Either that or you do honestly have the reading comprehension of a five year old. The oooonly reason i could maaaaaybe see you thinking im ‘attention seeking’ is when I vaguely mentioned in the tags of that first post that I had a system specific blog however i also 1) do not advertise it nor did i put the name of it on that post OR ask you to follow it and 2) admitted that its barely ever used. Again, still making no sense to your accusation
And like, honestly, at the end of the day, accusing people you dont know on the internet just by random posts they post or terminology they identify with for being fake is just so, in your own words, gross. You dont know these people’s lives. You dont know what they’ve been through. Again, completely ignoring whether you can or cannot have system without trauma my original long response talked about how the person identifying as endo might actually have trauma and not know/recognize it as such and by harassing them you are only making everything worse for them. You LITERALLY do not know these people. You dont know me and you made that very clear when you were so crushingly wrong about me by literally just the second anon you sent.
As someone who deals with the anxiety and fear that i am secretly a fake and dont know it, not just about being a system but like. A SHIT ton of stuff in my life, it does not help when random fucking people come accusing me of that exact fear. Going back to that therapist who tried to tell me she didnt think i had bpd it took me SO FUCKING LONG to accept i did in fact have bpd after that. And it was fucking painful to deal with mentally. When every sign in the motherfucking book pointed to YES i have this thing but all it took was ONE woman with a degree to tell me i was ‘too nice’ and suddenly my world fell apart. I no longer felt like i had a name to the feelings and thoughts i was suffering from. Dude that shit SUCKS it is SO painful and stressful. Like literally, please, for the love of all that is holy, do not inflict that on others. You might think youre bringing justice in some weird way but theres a higher chance that you are hurting people just as much as you seem to think endos cause hurt.
Now, because i know you SO DESPERATELY wanna know my opinion on the post you sent in the unanswered ask, honestly? I dont know how much i agree with that persons post. Like. Playing in the field of maybe that was an honest to god opinion and not just like a joke they were making, really not sure how i feel about it. In my opinion, i wouldn’t be running around trying to get my brain to spawn in more little fuckers to deal with. But i also have a lot of mixed feelings about being a system and my headmates. For one i dont get along with all of them, and not all of them get along with each other. Shits really annoying and in some extreme cases stressful as fuck. Every time something new pops into existence, I’ll be real, im kinda scared. I dont know how things will once again change or shift. And my head is just a single head. Its one brain that now has to deal with so much going on i get a lot of headaches and dissociate sometimes even in the middle of doing things or talking to people cause shit will just randomly become chaos (tho im sure other mental things attribute to all that too here n there idk) but I wouldn’t say i hate being a system. I also dont think id ever wanna do that like fuse therapy shit and get rid of the others. Both out of a fear of losing myself and a fear of losing some of them. That shit sounds kinda scary to me. And where, yeah theres some that i dont get along with, there are others that i do get along with! And love a lot! I jokingly call some of them my siblings cause a lot of them have been around since i was a little kid (tho ill admit for a while I thought i just had a REALLY strong imagination and that for some reason my imaginary friends kept talking to me even as an adult till i finally realized hm. Maybe this is not the case. Lol) so like ya you’ll never see me honest to god saying ‘man i wish i had MORE random bastards in my head’ but like, thats just me
I’ve met so many systems and a lot of them are different. I’ve met some that WANT to fuse (i dont think thats the word they use for that therapy but i just got home from a stressful 8 hours on The Grind so I can’t think words all too well lol) ive met people that LOVE being a system people who hate it people who are pretty indifferent to it. I’ve met systems who are have a different person fronting every day ive met systems where you almost never see or hear from the others and its just primarily the host that takes charge. So many different people feel differently about the same things. That’s just life. But I am not gonna use ONE post randomly shown to me to 1) make an assumption on someone (especially something as harmful as faking) or 2) as a valid reason to harass them. Especially not when the person showing the post to me has only acted hostile towards me. Like honestly. Genuine tip here, being rude and mean to people is not how you try to change their minds or try to educate them on something. Walking into my house and telling me im the fake hedgehog just cause of one post and one answered ask and then trying to tell me im wrong is like so not the way my guy fr
I’m pretty sure ive said my entire peace on the matter here. So yeah, again if you send me any more anons i wont be answering them. I’m saying this just to try and save you some time and also some peace of mind. Honestly, please block me. Please forget my existence and go live your life. Its honestly worrying how you have now spent like two days in my anons about this shit, like i am not even joking like the joke is over please please please finish reading this, block me, and go watch one of your favorite comfort movies and smile i mean this so seriously
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Also like seriously consider if Diagnosis is safe or right for you Diagnosed between 4-5 years old Self Dx is valid and most folks who are Dxed legit dont have anything against self dx for the above reason But Bigger issue Why is Diagnosis required to access autistic social spaces?? ^^^^ Thats the real question. Like grew up autistic have no problem with you folks joining us. (So long as you don’t like use your privilege to speak over issues that are specific to diagnosis (legal shit like not being able to marry due to insurance,mental competency tests etc. (Also no you cant be like yep Im going to reclaim the RwordNo Nope No even folks who are diagnosed shouldn’t use that word as like our elders who are still alive who survived Asylums and Being called the Rword to force sterilization which is still very much happening.)
But I will Say this as well Consider being diagnosed Carefully as Diagnosis comes with a different Ball game of Legal oppression. (Not to shame. Just to let you know what most folks don’t beforehand If any of us has a choice to be and live without barriers …. None of us are going to judge you for being like I am autistic but I recognize official Dx would add stigma I don’t deserve.) We genuinely want you all to live your best lives.
•If you are diagnosed with a disability under the age of 22 Insurance dictates wether or not you will be allowed to marry.
•People if they know you are Asd or disabled will use that as a weapon to invalidate things you know and celebrate about your own identity… (Many Autistics are Lgbtq+ and or Trans people use Asd to be like “well they cant actually know they are _____ .”)
•Forced poverty is very real. If you choose not to dx thats ok! Barriers are real and we get if you weigh the options and decide against it
If you are self diagnosed there are things its 200% chill to advocate on Things
Like sensory overload
Medical comorbidities
But Autistic culture is starting to get a reputation of canceling people too
Which Autism Parents for example
Many Autism Parents are also Autistic alot of the harm they do is thier own internalized Abelism and oppression fighting isnt always the best way to help them understand themselves and their autistic family members better.
Also alot of folks who are the most anti autistic can be folks with internalized abelism. Its super real.
Sometimes not being diagnosed is a privilege to to forced or unconsentual ABA done without parent or individual permission.
But also like If you want to advocate come to some autistic social spaces or start some.
Theres exposure that is hard to get without a diagnosis (So there are some informal groups and ways of getting exposure. And most of us love You all!
Genuinely we are excited to have you join us we are excited to share and guide you. We know late dx and self dx happens and in diagnosed spaces a lot of us are super cool swapping tips.
Just know that IDD can make some accessibility hard for folks. So you have to be patient even with social issues as a-lot of you all have an access to privilege you don’t realize you have in terms of educational material being accessible.
Lastly
If you do get diagnosed
We are anti Eugenics so not pro like Intelligence shaming, non-speakers exist I for one alternate I can only speak sometimes…. When i cant speak it hurts too…
Lastly Anti Eugenics means dont make fun of IDD and Engage in Intellectual ellitism
However this doesn’t mean don’t check your assigned intelligence score as there is different barriers if you are 2E as well and ways you can use that privilege to make things more accessible for everyone. Including translating into comfortable language for folks with IDD who need that.
Part of the beauty of the spectrum is we fill in one another’s blanks we help lift one another up.
But note also if you go for an asd test and end up with something similar but not the same you are still Neurodivergent.
Neurodivergent is a large community but some common neurodiversity’s that are not discussed as often (At least positively.)
Are Schizophrenia. (Which also are kin to Autistic folks we survive together. Even if its not the same we can still support one another.)
Personality disorders aren’t Autism but are Neurodiverse and stigmatized and deserve love and respect as well.
Borderline personality, Narcissistic personality,
Etc.
If you don’t end up As autistic it doesn’t mean you aren’t a part of our community (Neurodiverse.)
also know like (Autism groups centers etc advocates in there are not against having you join us for hangout sessions or social group activities. Its ok to ask a diagnosed friend how to learn more or join our spaces if you aren’t dxed!
Also some of you might be able to help us fight ABA in medical spaces as we aren’t listened to directly as a lot of places get funded for that shit….
Thats all sorry its long love you all keep advocating just know you aren’t imposters and can advocate on things you experience like sensory and comorbidities just engage with other autistics about more complex/nuanced issues.
Also Please if you are self DX late DX the reputation we are getting for Cancel culture (And not like canceling people who did stuff thats unforgivable. But if someone doesn’t know or have privilege to access information please please don’t harp on folks who are learning. As that is not restorative justice.)
Restorative justice being how we deal with issues in disabled autistic spaces. Just because there are conflicting respect needs and social, emotional ,educational access needs.
Tone is not mad just infodump
Genuinely like talking to yall about asd (Have a ton of cool ND cultural research I’m doing that im trying to figure out how to share without being seen as elitist… when the goal is to use privilege to dismantle privilege especially eugenic. Thinking about talking about twice exceptionality more and what growing up 2E-Asd is like in disabled spaces and why Disability Autism is my main identity not Eugenic assignments.)
Lmk if any of this is helpful or something y’all have an interest in. 😎🖤
#actually autistic#diagnosed autistic#self dx#late dx#late diagnosed autistic#anti eugenic#disabled community#autistic community#restorative justice#restorativepractices#anti cancel culture#actually disabeld#twice exceptional#tw eugenics#actually2EAsd#2Easd#developmental disabilities#self dx is valid#late dx is valid#advocacy#advocate#autist#accessability#access#signal boost#uplift#amplify#reblog#you can reblog
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idk how to really start this but like. my mental state is just so exhausting like im so tired of it. theres no reason i should be this volatile theres no reason i should react to situations the way i do. just last night i had a weird (not even that bad) interaction with a stranger and it pissed me off so much i tried to kill myself. i wasn't sad or embarrassed i was just so furious over it, because it was a 10 second interaction and i couldn't explain myself to the other person, and i was just so fucking angry i was ready to physically hurt the other person over it well after i walked away. and then once i got home i was so upset that i got that unreasonably angry over a nothing interaction. and its not like i even got angry while i was still with the other person! it wasnt until after i walked away! there were only two thoughts circling in my mind for about 30-60 minutes after (idk im so bad at keeping track of time) that were just "why do i react to things like this" and "i just want it to stop hurting" bc thats the worst of it it just hurts so much. i swear im in physical pain after having breakdowns like that i feel hollow in my chest and obviously i dont have to say anything else about how much it emotionally hurts. i just want it to stop hurting. is that really too much to ask for? to not be in so much pain for just a little while? i guess i still havent come to terms with the fact that im disabled, because i still think of being disabled as someone who uses aids, even though i know invisible disabilities are a thing. i dont see other peoples invisible disabilities as being invalid, just really my own, because i still feel like im high enough functioning that i shouldnt consider myself disabled. i dont use mobility aids yet i dont take pain medication yet so therefore the literal brain damage i have isnt bad enough, im still fine. i kind of got off track but thats also part of it i guess. another thing that really gets me is the fact that i actually do have bpd, i was diagnosed by an actual doctor at 17 and its still a more than valid diagnosis. i feel like im in this constant cycle of "i have to get better because i cant keep living like this" and "i have to get worse so everyone else can see what theyve done to me". like last night i literally had to sit down and reread the dsm chapter on bpd to remind myself this is why youre like this. you do have this diagnosis its real and it is a problem. my 30 minute episodes of actively trying to kill myself to be followed by watching tv or something and laughing as if none of that happened. i still cant fathom not living like this, not having to go through this every fucking day. and then on the other hand i had a great interaction today at my job that made me feel really good about what i do and proving the work that i do is actually helping the community around me. and i felt on top of the world for like an hour, i felt great! and then another thing at work happened where i proved myself/my team to be right about something! which was also great! and i got another half hour of happiness. and then i get home and im reminded of how alone i am, how i really have no one to do or share anything with anymore. which is partially my fault and partially not! im not gonna act like im the most pleasant person to be around or that im easy to deal with, but fuck, man, i try. and it always feels like no one else is trying. i cut my own hair for the first time a few weeks ago; it came out great! and had no one to tell about it.
and now im just staring at a wall over all of it. none of the bad stuff happened none of the good stuff happened. im gonna get violently angry later and im gonna be nearly euphoric later, its just another day. and i want to change i want to change my lifestyle so bad but how can i do that without any help. i spent years of my life begging for other people to help me and got ignored, which resulted in my disability. i tried so hard to fix it on my own but i couldnt! im not a doctor! and now ill never be because i couldnt finish my pre-med classes because of my disability! i feel like im constantly screaming at the top of my lungs and waving red flags shouting please for the love of god someone help me every day and every day nothing changes. they say you cant help someone who doesnt want to be helped, but has anyone actually tried helping people before? youre telling me you cant problem solve? you cant find a different road to a solution, just because we cant take the easiest one? im sorry that its not easy for everyone else to help me, but how does anyone else think i feel?
but whatever. im fine now. i relived every emotion i went through while writing all that but im fine now. now that its all out there its all out there, out of my system. i dont care anymore. because it didnt matter. because it doesnt matter. none of it matters. it happened and its gonna happen again. ill go through these cycles again tomorrow and the next day and the next week and the next month and the next year and so on. it is what it is i guess. but does it really have to be.
#talking to myself#content warning for like. borderline personality disorder. i guess.#this is just a wall of text bc i wont go back to therapy no one feel obligated to open or read this
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Dead To Me, S3 thoughts
🍸Spoilers ahead🍸
I was only going to watch one episode and then as soon as we got Judy diagnosis I decided to binge watch it in one sitting. I appreciate being made aware of the bad early so I can prep or speed through it. Am I sad? Yes. Am I glad I got to see my fave bestie wives? Also yes.
Season 3 feels detached from the other two and very clunky, but the reasons why make it a little more bareable. There are parts that could have been dropped and or cleaned up way better on that many if can agree. The policies storylines were just so all over and i didn't really care about them as much as i did previously. Before it felt very tangled into the story as a mystery comedy who dun it, but this one just was like oh wait we have these cops that need to be here too. The focus this season was on Jen and Judy as it should be, but not having the characters able to leave their home without saying why is a bit in your face. Theres a lot of short moments that mean so much stitched together but, nothing that connects any of that to their crimes and the police. Random characters have to make cameos and they can't be done inside a closed space so they are outside for 2 minutes and then we never see them again. Except Jen's co realtor whom I love.
But knowing the reasons it does feel this way makes me go "I'm happy we at least got a final season". It was filmed in the middle of the height of the pandemic when things were shut down but productions were starting to get an idea of how to keep going. Christina was diagnosed with MS a short while into the start of filming and production took a break so she could get some help and everyone figure out the next moce. Also, let's not forget the cancer storyline is heavy as shit and she is a literal cancer survivor. She gave fans what she could instead of saying let's just scrap the show with 2 seasons. None of the gripes about season 3 have anything to do with anyone's acting at all. Everyone did great.
I just do wish at moments that the writing of certain elements had been better and tied loose threads together a bit better. I'm really sad that my fav is......sigh but I can't be livid. People unfortunately get cancer and some people die. Often the good ones and its heartbreaking. It is reality and it sucks and we always wish there had been more time.
That being said i am definitely looking forward to the fix it fanfics because I wish that this is not the reality a literal angel got in a show. I get this is a more realistic ending but I would like happiness for everyone. Happiness for Judy and a chance to be a mom for a 3rd time. They could have spun it to be like heck lots of people downgrade from stage 4 to stage 3 and live quite a few more years if not a long ass time. Them on their trip and the doctor saying it's a miracle, the police throwing out Jen and Judy's files, and then them getting to raise a sweet baby, named in some way after a living angel. In a beautiful home with her moms, brothers, and dad. Maybe end with them all watching one of "Boop's" choral performances, even if it would have been very very cheesy. I think that would have been nice to see.
But, the finale was the best written episode of the entire last season. It felt like season 1 again, even if you don't like the outcome. The comedy, the girls, and their time together.
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So people love to say that America doesn’t have free healthcare because the quality would sink and the waits would go up. Now, while those are valid worries despite being no excuse for the atrociously high prices of even minior procedures, I’d like to share some bullshit that I’ve experienced involving normal US hospitals and medical branches alike.
My root canal is going to cost 2500 dollars because it is not covered by most dental plans despite it being a completely necessary procedure that directly affects my health. Absorb that then absorb the fact this plan covers some of braces. The crown alone is costing over 1200.
I almost died in a hospital waiting room because my ‘stomach ache’ that was causing me so much pain I was sick with it wasn’t severe enough to qualify for immediate attention. Undiagnosed Appendicitis.
My nephew and sister almost met their end because an incompetent doctor misdiagnosed my sister with a URI. She had type A flu.
My cousins father had a doctor who refused to diagnose him despite him coming back constantly because of lethargy. Said he couldn’t find anything wrong. Her father was poor and had really bad insurance. Finally he went to another doctor and was diagnosed with kidney cancer. He could have lived if he had been diagnosed a year or two prior before it spead but by the time he got his diagnosis, it was too late. He died, I believe, a few months later but I was young so he might have made it a year or longer.
I suffered from chronic nosebleeds as a child to the point that blood didn’t even scare me anymore. The doctor told my mother that it was coming from wounds inside my nose and I was most likely picking at it and there was nothing medically wrong with me. My mother, knowing even as a child I knew not to waste her money, took me to another doctor. Severe Anemia. Still suffer from it too this day. Have to take those horrid tasting red pills🤢.
My aunt constantly butchering her budget because she needs her insulin and it’s cost keeps getting higher despite it remaining relatively the same. Luckily my state is looking to cap it at 100 though if that will actually go into effect isn’t determined yet.
My mom, bless her, repeatedly going in for her back aching only to be told pain was normal for someone of her weight and age. Nope, she is a nurse and turned people that were 300 pounds or more. She had completely blown her back and had a pinched nerve that was so severe she could barely stand without pain. The doctor that diagnosed her was surprised she could even walk.
My sister, having a grand mal seizure in the nurses office of a high school. They told her to stop faking. That bitch wasn’t even a real nurse so this one doesn’t count but I had to mention this because why the fuck wasn’t a registered nurse hired?
My (other) aunt having minor chest pain then suffering a heart attack in the waiting room because they had her wait so long since she didn’t seem serious. I’m sure that’s going to have lasting damage that could have been easily prevented.
My sister giving birth and getting a 28,000 dollar bill for a room and care for her and the baby. She was there for a day and a half. She didn’t even have a long or complicated delivery.
My mother being told she was completely fine to continue working despite having an off feeling about her third pregnancy(about 24 years ago) the doctor told her there were no complications and she could go on as normal. She miscarried her seven month along daughter three days later because her placenta was underneath the baby and tore. That doctor is still in practice.
The nurses in my mothers delivery room ignoring both her and the monitor. Which, if they had been looking at, clearly desplayed my older brother with his umbilical core wrapped tight around his neck. He lived because my moms main doctor walked in and had a conniption fit when he noticed the vitals dropping. He’s the doc my sis uses now. A good man.
(Same bro)My older brother turning blue everytime he cried being brushed off. Hole in his heart that has since closed.
When I was younger, I slipped in the shower and hit my head so hard against the metal lining of it(stall shower) that the skin split open and abscessed. My doc treated the abscess but did no further testing after a 4 hour wait. As we were leaving, I don’t remember much of this week my mom told me, I vomited and passed out in the parking lot. Had a concussion.
My brother being misdiagnosed with the flu, strep, and a few other things over the course of a few weeks before one doctor finally tested him for HIV. It was positive. Luckily he only had one partner. Unluckily, the partner was the one that gave it to him via cheating on him.
Me, almost dying of a violent case of strep throat because they said I had a sinus infection. My fever peaked at 104 then, blessedly, broke. I do not remember this as the memories of the days I was sick are incredibly fever burned but I remember wrapping blankets around me because I was so cold.
The strep attacked so quick and harshly that if I had lived alone it probably would have killed me since I wouldn’t have been able to get help and I would’ve kept trying to get ‘warmer’ and helped raise my temp over 106. You typically don’t come back from that one unharmed. If at all.
My older bro(cord baby) being told suffering from auditory hallucinations was a common thing(not wrong but they should have actually asked about his family history and idk, did more??) he had undiagnosed bipolar disorder. He is medicated and much happier now.
Me breaking my gotdamn pointer knuckle and the x-ray person getting blurry x-rays that she used despite the fact that they weren’t accurate. Thank you bitch, now my abnormally short pointer finger clicks because it began to set wrong.
Theres a few more but I’m currently giving my bro a hard time for texting me a text meant for his bf so imma bounce for now. May add more later. The whole point to this was to show people that don’t want free health care because the ‘quality would go down’ or the ‘wait would be too long’ that the wait is already long enough for you to die anyway and the quality already sucks ass if you’re poor because they will not diagnose you correctly.
Or They will misdiagnose you then blame YOU when you sue(happened to my mom in that miscarriage one but because he hadn’t wrote a release back to work she had no actual proof he’d told her she could.)
Or They will overcharge you for things that have a far cheaper value simply because they can and you can’t do anything about it because you need that procedure or medicine to keep your health good.
I can understand things like heart surgery or transplants, you know, the big major stuff not being free because yeah that shit takes a fuck ton of resources and care so I get it, I do. I can reasonably say “Yup that should cost thousands.” I mean, I’m don’t even avocate for fully FREE healthcare, I just want a limit on their overpricing bull shit to where it matches with economic standards.
You can’t expect someone with an average 7-4 job that pays 10/hr(oooh ya, y’all think I’d go higher? Guess what, young people starting out their careers also get sick!) to drop thousands upon thousands of dollars for whatever. The sad thing is I can say ‘whatever’ and you can actually think of multiple things that aren’t that major or that resource draining yet still cost thousands.
Even someone making 15/hour couldn’t do that and I’d be hard pressed to say even 20-25/hr could do that. They may have it better and be able to pay it off faster but they’d still be in debt for a while or have to work years after their planned retirement to make up for the lost savings if they were lucky enough to have them.
I’ve also heard people complaining about it raising taxes but you’ll spend way more getting something done at a hospital then you’d spend on those taxes in a year.
Besides, if you’re so pissed about taxes then to even it out protest the stupid taxes. Your house? Taxed. Your inheritance that you gain but also leave behind to care for your family? Taxed. Your property that you bought 100% full price paid? Taxed every year. Your car? Taxed.
How bout getting pissed about those instead of getting pissy about people getting their health fixed? There are plenty of ridiculous taxes so I don’t know why people are so against having one that actually helps people.
Sorry for this rant, I know it’s not centered around my profile theme but I am majorly pissed off that I’m about to have to let a tooth rot out of my head because my insurance decided that: covering something cosmetic like braces? Yeah! Covering a completely necessary surgery that can actually harm/kill the person via infection if left untreated? Nope, that costs us more!
I can’t drop two fucking grand on dental surgery. It’s just not happening. I don’t know anyone who can do that shit. Anyone who gets pissed off about me posting this: go slam a hammer against your tooth until it cracks down the middle, exposing your nerve to the harsh unforgiving world then let it develop a cavity around it.
Afterwards, try to eat literally anything: hot, cold, hard, soft, it doesn’t matter. You’ll cry, I promise. Now imagine being told the only way to fix that is to cough up over two grand and if you can’t well then oh fucking well? Kinda hurts ya a bit. Not nearly as much as the tooth but still.
Hell, I know dental probably wouldnt even get covered if they made healthcare reduced or free but this whole situation has reminded me just how fucked you are if you get anything remotely wrong with you in the U.S
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I still haven’t fucking gone to sleep and its 2:30pm so at this point we are watching the movie that i hate so that the endorphins of being offended will keep me awake until like 5pm so i can just crash for the whole night and still wake up at a semi reasonable hour
so are the cartoonish fantasies of murder of people besides Honora actually verified real things they wrote oooooooor did this movie just want comic relief cgi....murder of a priest
honestly pardon me if this is a bigotry of some kind on my part but if you’re already so far gone in a morbid fantasy land that you have vivid daydreams of executing people, and you’re reunited with the one person you give a shit about after literal months, you are.....past the point of remembering not to kiss if you are gay. like if they were at all gay they would have kissed on the mouth here. as they FUCKING SAID, they aren’t gaaaaaaaaaaaaaaaaaaaaaaaaaaay and i’m MAD this movie perpetuates that some murderers were gay who weren’t
i’m aware that i am truly-- whats that expression? about crackers? at a certain point a thing just becomes to the point where youll complain about the way they eat crackers, which is an objectively ridiculous complaint? yeah, i’m aware i’m at that point with this movie. maybe i shoul-- no, because like i said, if it wasn’t based on a true story i’d only be enjoying it ironically-- unless i assumed that like jackson’s previous work it was supposed to be a horror comedy, at which point honestly theres a whole other set of problems and im not sure if i would find it mysogenistic or not. Actually, that’s bullshit, because literally my shorthand for complaining about Heavenly Creatures prior to Ammonite was “Peter Jackson’s movies are like “if you are a man with close friendships you save the world, if you’re a woman with close friendships you become crazy, gay, and kill your mom”, so.
they kissed goodbye on the mouth because not only is this movie harmful to My People it also enjoys trolling me, the individual, specifically
honestly the fucked up thing is that if it wasn’t based on a true story and it wasn’t made in a time where there were no queer leads, this movie would actually be like? pro lesbian? honestly i think the whole thing might be okay if they were in fact romantically into each other but they HAVE. SAID. THEY. ARE. NOT. SO YOU’RE JUST. BLAMING LESBIANS. FOR A MURDER. NOT DONE BY LESBIANS.
Im guess ficticious Honora notices the kiss and thats when the homosexuality “diagnosis” crops up
not a movie critique but i am, as the movie probably wanted me to be, all “bitch she brought you FRUIT!” about honora giving juliet fruit
honestly how many nerd girls of all sexualities did this inflict satanic panic upon
it’s like....if the bronte’s didn’t also have the whatever worldbuilding syndrome the ableism already present in for certain types of neurodiverse girls and nerdy girls......not even just this movie but this trial....
pauline is telling juliet some boy is in love with her and im pre-emptively mad because either something explicitly gay will happen or the codependence will roar up and be all u can’t be with him hes not in our special little club and itll be so homoerotic that its the same impact,just with a get out of accountability free card
juliet no girl actually into boys notices when one is in love with her and i am speaking to the fictive juliet only
i’m glad the like negative aspects of their close friendship are cropping up other than that they LOOK WEIRD and WRITE THINGS CONTEMPORARY BOYS PROBABLY DO ON MINECRAFT SERVERS DAILY and superficial shit like that. especially since we honestly still dont know all that much about their personalities or relationship to each other outside of their, for lack of a better phrase, special interest
(i guess i could look up the name of the sharing a world mental thingie but like listen i’m not a neurotypical i can call it a special interest without equating having one to........the hulmes/parker murder)
cutting the scene directly after the line “he’s only a stupid boy”, okay nobody gets ANY fucking benefit of the doubt anymore, that is so much gayer than any of the kisses on the mouth, that literally feels like. you took a big, traumatic part of lesbian culture and shared/collective lesbian trauma and you put it in the mouth of a fucking MURDERER who WAS! NOT! A! LES!BI! AN! so that your fucking MOVIE had more PATHOS or whatever and now Kate Winslet has a career and the audacity to not do any lesbian roles for 26 years and then stroll into ammonite like “whats up dykes! found this cool rock after i fell off the titanic! might fuck around and kiss jo march while i clean it up!”
wait, now that i’ve officially bannished plausible deniability of goodwill, can I stop recording my reactions? i feel like that’s what i was trying to keep track of, whether or not it’s fair to call this anti lesbian propaganda when i haven’t seen the full contents, but like now I’m Calling It, it Is Meant To Be Read Explicitly As Gay And Thus I Am Allowed To Be Mad At Kate Winslet and don’t have to keep analyzing whether or not I am. I will check back in if they get like formally “diagnosed” with homosexuality and the fictive versions of the real life people reject this in the movie but for now I’m praying that ceasing to take notes will make finishing the movie-- a thing I am now determined to do as a stupid endurance thing to prove to myself i can-- fucking faster. or maybe ill feel compelled to keep taking notes in 2 seconds, who fucking knows, BYE
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Tips for Mentally Ill Students
Preface: I know theres a lot of this kind of stuff around, but I thought I would put out my two cents as someone with ADHD, anxiety, and Bipolar II (so a combo of hypomania and depression that cause things I’ll elaborate on in this). This may or may not help with some chronic illnesses, as I have fibromyalgia which is pretty inseparable from my mental health.
This all comes from my experience as a first year college student, who didn’t fully take this advice all the time, but definitely plan to fully incorporate in my first semester and I’ll update you. Most of this advice I did take though, and I made it on the deans list and got a 4.0 on my jury so I think I did well for myself.
1. Do Things Ahead of Time - Executive dysfunction, depression, pain, etc. is a bitch. It will tell you that you can’t, that you shouldn’t, that it’s impossible to do that thing you need to do. And really sometimes it is impossible for you. I know I found it impossible to do my homework sometimes, and thats not good. However, this is where using your good days to full advantage comes in. On my end of this, I often even use my hypomanic days (which are not fun trust me, but thats not what this post is about) to get shit done. When you have a day where you feel like you can do things, USE IT. Do your homework, clean that corner of your room, plan a month ahead (I literally make bujo spreads a month ahead in order to counteract my depression and busy days), email that professor, get it all done. You will love your past self for it.
2. Spend Time Outside of Your Room - (Bear with me this one is long) Ok, I love to sleep, I am constantly tired. Fibromyalgia is horrible, as is depression. However, sleeping all the time is not conducive to studying, doing homework, practicing oboe, showering (trust me you will not wanna get out of bed just to shower and you will go for days without). In college you have a lot of free time, and that free time could be spent in your room, or it could be utilized to 1) spend time with friends 2) study in the library 3) practice an instrument 4) explore the campus/city 5) draw in cafe. I’ve found that being outside of your room improves your mood, and also allows you to be more focused on your work. Personally, I like to find the most underutilized area of the campus at the time, and studying or drawing there. I even once had a TA tell me to go take a walk and destress rather than take a test, and he just had me take the test the next week (he was the best TA). It’s very good to get out of buildings, especially your dorm. (If I’m honest though I did sleep in the lobby of the music building many times which probably wasn’t good, but I’ll admit this tip didn't always work).
3. Honestly Classical Music Doesn’t Always Work - as a music major who plays the oboe, I’ll be honest, classical music is distracting. I find myself constantly analyzing it and/or just getting bored with it lol. So, to fuel my brain’s need for stimulation while I do homework I put on podcasts or youtube video in the background. I know people will tell you that you can’t multitask, but as someone with both ADHD and exhausting hypomania, I need entertainment. If that means classical music for you, go for it, but I’ve talked to a couple of people and they agree with me - it doesn’t always work.
4. Say No - people will ask you to do a lot of things such as going to a concert, party, tutor them and you don't have to do it. If you don’t want to, if you don’t have the energy, if you just don’t like them, don’t do it. I feel like this is the hardest tip because many of us don’t want to be hated, but what other people think of you doesn’t matter as long they don’t effect your future, such as professors obviously. This is incredibly hard to internalize.
5. 100% Effort All The Time Is Not Possible - we talk a lot about giving what you want to receive. Thats not how it works. You can’t always give 100%, and you won’t always receive 100%. The world isn’t equal. You need to decide how much energy you can serve that day, how much energy you think something deserves, and then apply it. You may receive just as much energy as you put in, you may get less in return, or you may get more. It just depends on what you’re doing. Its not fair to yourself if you treat yourself like a battery powered machine. You're more like a cell phone that needs to recharge and has less and less energy to give the more time you go between recharges.
6. Actually Socializing is Good For You And That Can Include Parties - I know I just said say no to parties, but parties can be refreshing. Obviously I you have social anxiety it might not be, but you don’t always have to go to parties you can just hang with a friend at a cafe. However, what I'm trying to get across is that doing something new is much better than constantly doing homework, working, and just generally being by yourself. If I’m truthful, I love parties, I think they really bring me alive as an introverted extrovert, and they save me from myself. By the way, I'm not advocating for underage drinking here. You don’t have to drink at parties, and if anyone pressures you to, leave. but if you're in a safe environment parties, genuinely are a good thing to save you from self impose solitary confinement.
7. Talk to Your Professors/TAs - this one is self explanatory. Your professors are your greatest resource, and you need to tell them when you are having issues. This doesn’t mean you have to tell them your mental illness. Its genuinely not necessary, unless you really want them to understand the issue (such as e telling my piano TAs about my fibromyalgia that hurt my fingers). You can just ask them for an extension on the occasional piece of work, email them on your bad days and tell them you can not make it to class and ask for a make up date for the test. Most professors are very kind especially if you are in a small class/major. Of course it depends on the class. Personally I’d reserve this for your smaller classes, and use your extra effort on those big classes where accommodation is harder for the professor.
8. Related: Use Your School’s Resources - on that note, your school may have counseling/therapy/psychiatry/etc. that you can use. If it’s free, or you have the insurance, please use it, and if you can, use it regularly. In many cases if you have an official diagnosis, you can get disability accommodation for your mental illness and/or disability and/or chronic illness. This means you'll have an official “excuse” for violating the absence policy (please don’t though, that one is tougher to accomodate), for turning in your homework a day late, for needing power-points to be presented rather than verbal lectures (I have this one for just in case moments, normally professors automatically accommodate this though). This means that if professor don’t let you use your accommodations, they can get in trouble.
9. Have Things That Make You Feel Better Easily Available - sometimes it’s incredibly tough to get out of bed, but you need to. On these days, you need something that can make you feel better without just skipping class. On these days I always have sweatpants or leggings available for comfiness, in the fall I grab my emotional support scarf (not a total joke, that scarf comforts me on my panicky days), sometimes I even use my CBD vape pen (yes, yes I know self vape nation lol get it put of your system). Just having things that make you feel good, in your site, and readily available for use is so important and can really make the difference.
10. Not Every Piece of Homework Needs to be Done - exclusively the only reason I did not get a 3.8-4.0 is because I weighed my options and decided it was better for me to not do certain low weighted hw. Rather than use my spoons doing hw that wasn’t going to ultimately help (I knew the material, if you don’t know the material it’s tougher to use this tip), I used my spoons and energy towards doing the laundry or practicing my oboe for an extra 30 mins. It’s important that you weigh what is more important to you personally.
I hope these helped! I’m trying to be realistic as possible, and been as candid as possible so if this helped feel free to message me and talk about it because I’d love to hear your story as I’ve shared a bit of mine here.
Also, go ahead and add on to this with your tips!
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Okay i’m sorry for this rant but i am struggling and i’m running out of hope so some of y’all better donate some of yours before i combust...
Read at your own discretion.
And please if you have any lived experience of complete fucking hopelessness along with bipolar disorder (because that specific diagnosis in my rather long list of conditions is really new to me) i am not coping and could do with some advise, so please do share if you have any, it would be really helpful.
Okay so i call bullshit.
I spent 3 months in a manic episode as a result of a setting change in my brain implant (the one i got to reduce the symptoms of my ocd which obviously as per my chronic bad luck not only didn’t work or help in the slightest but also gave me bipolar)...
Then upon getting tired of waiting for the mania to disappear i changed settings after finally getting permission from my surgeon who finally had also given up hope that the mania would subside and the setting start to work to help rather then hinder.
Only for the new setting to send me on the opposite side of the spectrum and make me suicidal (luckily only for 2 weeks as i was getting ever increasingly more unsafe even whilst inpatient in a psych ward, so a change of settings was allowed quicker for my own safety). But boy did that feel like a lifetime when every waking moment of those 2 weeks felt like i was drowning.
And just because after 10 months of constant setting changers (almost all of which options i have tried) i was getting tired of getting my hopes up with a new setting change, only for it to make things worse; i went back to a really low setting as per my doctors suggestion and i thought that would be a good choice.
That setting i changed back to, i had been on before and while it didn’t help it didn’t make me worse so until i can be fucked trying new settings with the chance it would send me over the brink i opted for a safe setting that in the past has done fuck all which i am willing to deal with if it means i don’t risk getting worse.
BUT
Noooo. No rest for the wicked, my bloody fucking manias back and while i new that was a possibility as the mania was caused by a specific setting and would likely only be present on that setting. It was mentioned that there was a possibility that the mania would stay because basically of an accidental fuck up caused by that old setting that is now causing that side effect to continue even when on a otherwise reasonably safe setting.
So long story short the mania is irreversible and likely will come in and out of my life on and off indiscriminately as well as the other half of the bipolar diagnosis (i know officially have, yay) being increased long periods of suicidal ideation and i am BIB MAD.
I got this surgery to help the main out of 7 mental illnesses (ocd) and satan or karma or god or whoever the fuck dished me out a entirely new diagnosis instead of fix the one i wanted benefited.
PLUS i scored a brain infection thats the first of its kind (that my state has ever seen) as a result of this surgery despite this surgery being common - mostly used for Parkinsons. And to this day i am still facing shitty physical health as a result of this, even having to have 2 surgeries 2 weeks ago to fix damage that infection caused by that ‘life saving, mental illness curing, miracle brain surgery’.
Honestly will my bad luck ever come to an end?
Theres only so much i can take.
And worse is i fear this mania will come to an end only to segway into a episode of prolonged suicidal ideation (and even intent) like what happened last time. Because i can’t deal with that again, not on top of all the other issues my still really really really fucking bad ocd is causing me.
I don’t get why all of this is happening to me.
What did i do to deserve all of of this misfortune?
Am i getting punished for crimes my soul committed in a previous life?
Does god exist and he’s a little bitch who has it out for me and goes out of his way to make my life miserable?
Am i actually dead and living in hell paying my debt to the devil in the form long term suffering and hopelessness?
Or am i cursed? Is that it?
Whatever the reason i have had enough.
Also honest observation insert: Apparently when i started venting my manic fueled frustrations in this post my mood was still heightened but if noticeable in the sharp change of pace in this post the mania has officially began to leave the building now (which i guess was what i was asking for) but as is tradition the end of this mania (thats luckily only been going on a few days) has plunged me balls deep into the depressive part of my bipolar and man is the desire to die starting to look more and more appealing.
I won’t do anything don’t worry!
I mean i guess now i have scored the start of a break from what was only a small manic episode but exhausting nonetheless. So i can finally get a good nights sleep, because the mania was defiantly cock blocking me from achieving shut eye until tonight. So i’ll use this opportunity to catch up on a week of lost sleep (plus sleep is like a vacation from life, a short visit into destination ‘dead’) so experiencing the complete lack of being consciousness through sleep will be a nice little visit into what i crave (death) without the huge commitment that comes with death and the sadness it causes others.
Any way this last week or so of mania has not been fun but as i crash into the opposite end of that bipolar scale i am realizing how much more preferable that mania was as apposed to my current quickly declining mood. And upon reflection take back all the smack i talked about mania only because now i want to go back in time to that manic period rather be in this dangerously depressing present i am currently getting stuck in. And just argghhhh.
Right when i think it can’t get any worse it does and then this happens again and again a fucking again.
When will all this suffering end? And when it does end will it do so by eventual good luck and recovery or eventual giving up and the welcoming of death like an old friend?
Because i really do want that first option to be the case. After all thats why i chose to get this surgery - for hope of recovery (and because it was the last option in recovery that i had yet to try). Because i do hold onto hope and i do want to fight for my recovery until i eventually obtain it.
But i have been fighting for this false sense of hope for more then a decade but the longer i wait and the harder i fight for recovery the more it hurts when i get nothing but bad luck to set me backwards every time i think i have made progress. And so the vicious cycle repeats.
This toxic cycle of suffering really does make it hard to continue feeling positive about the future. Therefor at times like these i find it easier not looking at the future at all because i don’t see myself being alive long enough to be in it most of the time. And that concept actually really does put me at ease.
Nonetheless i wake up and try again and again chasing what little hope i do still have left over from the abundance of hope i used to have before over time i began to loose most of it.
This dwindling hope really does scares me though because i am worried especially now with how low i am at the moment that any day soon that hope will start to run out until i don’t have enough left to save me from myself and if that happens i see no other outcome but to welcome death and admit defeat.
And don’t get worried ‘welcoming death and admitting defeat.’ is only a back up plan, its just kind worrisome to know the current plan isn’t gong too crash hot either and that my only organized backup plan revolves death.
Any way, this letter along with my mood stating off manic as hell.
And somehow ended here. In disappear.
But i fight on, for however long i have it in me to continue fighting.
And i ask (well lets be honest at this point i am basically begging) that the powers that be give me a break. I deserve it. Look even if that break isn’t recovery can it at least be to not continue getting worse. Because i don’t know how much further down this rabbit hole i can go...
#no one will read this but if you do please help#this is literally my cry for help so as is tradition i expect to be ignored and for that i am not but but if you do read and have any advise#i'd love to hear it#tw//#trigger warning//#ocd#bipolar#mania#depression#suicide mention//#okay i don't know what else to trigger tag this with...#because i really don't want people who don't want to see this be seeing it#but also like i said if you do especially if you found this by the ocd bipolar depression mania etc tag and have any advice to give#hmu if you think you can offer a word of advise or help even a little even if you just have personal experiences you think would be helpful#because i feel so alone in this and i hate it#personal
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I need to get good insurance for my SLR?
I need to get good insurance for my SLR?
I have a Canon EOS 450D SLR camera and I would like to get it insured. It s not a really expensive model compared to a lot of the stuff that s out there but i would still be GUTTED to lose it and wouldn t be able to replace it overnight. Can anyone recommend a good insurance company? I need to cover against accidental damage and loss/ theft and i also need the insurance to cover the camera when I am overseas. Any advice would be much appreciated!!! The camera with its lens and flash is worth around 700 xx
BEST ANSWER: Try this site where you can compare free quotesINSUREFOREVERYBODY.INFO
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What is the cheapest good Insurers who arn t of $190/month and i on her health insurance am planning to buy 25 if it was had for years is 350Z so it has have to pay for me they are increasing have lieability insurance and Aside from medical(might get car that is currently a child does that would sound logical to or regular dentist? Thank claims and was wondering at work and isn t for the new car? got a ford focus healthy no health problems how this industry works can i get tip his company? Or a I d be looking at. I be able to site for Home Owners price? or in California? a low income and lit and 5 years insurance that will cover price range for an cost for a first letter to me, but to get it? im I m 17 and would and never held any on mercury (4 people)...how for more? Please no a ticket in the does not increase my .
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weli have like three followers and like i dont actually expect anyone to see this i just want to rant and since i dont really have many friends i dont realy know who to tell.
my mothers really pissing me off for reasons that honestly i shouldnt have to be dealing with.
a few weeks ago my parents finally took me to a real psychiatrist, after 2 years of therapy and month in a mental hospital. it was set to be a three hour appointment for an official evaluation and diagnosis of my anxiety and depression and whatever the fuck else is wrong with me (which i dont understand since ive already been diagnosed by two prior therapists, the ER psych ward psychiatrist, and my psychiatrist at the mental hospital i was at, i dont see the need for anouther diagnosis of the same issues). okay, cool, whatever, obviously i’m panicking, not from the actual topic but just talking to someone in general (also my parents never leave the room b/c they think that i’ll just sit there and go non verbal, or as they believe, choose not to talk despite the fact that i have s.a.d. and was selectively mute growing up - i have non verbal episodes, it happens). well, essentially, i actually have no clue what happened in the room b/c after five minutes, the psychiatrist decided that i wasnt useful and i was too anxious to be productive and was sent out of the room. i sat in the waiting room for two hours continuosly calling and texting my mom to let me back on the room while i had a panic attack in the waiting room and slowly fell into a sensory overload from all the noises because the office is in a child pediatrics building and children are fucking loud. after two hours i’m left back into the room where the doctor tells me my diagnosis, my parents pay, and we leave.
i wasnt even present for my own evaluation. i get that he’s trained, but my parents no shit about how i feel, theres no way they can tell him. and furthermore, yeah, i’m anxious, but thats not the only thing i live with, yet its the only thing anyone will offer me help for.
im used to being sent out of rooms. people dont have enough pacience and ust assume i can control this. i was sent out of the room during my 504 accomadation meeting at school too, you know, the “you’re child tried to kill themself, heres an extra day for classwork hope it helps” meeting.
but heres the problem now. i have sensory issues to the point that putting on a pair of socks sends me into a panic b.c of the seams - a “bad touch” makes me break down crying - a flickering light burns my eyes - someone coughing feels like someone sceaming in my ear drums. and no matter what i tell my parentsm they dont understand how bad it is.
apparently they mentioned it to the doctor, whose response was to get me an asd evaluation. okay, sure. its not like my old therapist hadnt been telling my mom to get my evaluated for asd and sesory proccessing dosorder, its not like my father works with psychiatrists who work with autistic kids everyday who has been telling my dad to get me evaluated.
so finally my mom emailed my school counsler about the evaluation. she said that the school doesnt have the resources to do so.
okay
i went to my moms office to print out my essay, and she had her email open to my section. (she organizes her email by topic, she has a group of emails under my name). im a bitch and decided to look at the emails. she emailed my school saying that she is “sure i dont have autsim” but that my doctor is making her ask about an evauation.
the school wrote back saying that refuse to test me because that would require an iep rather than just a 504. the school psychiatrist essentially refuses to test students “simply for a diagnosis” and that my education and grades must be severely impacted by my issues. listen, no one gets a psych evaluation simply for a diagnosis. you literally cannot get the help you need w/out a diagnosis. mental health affects you in all aspects of your life, not just school. so many students cannot go to therapists or psychiatrists and rely on school resources. furthermore, my education is impacted by my issues - how can i get work done when the loud classroom make me want to scream? but the school and my parents dont know this, yet refuse to let me advocate for myself.
no one wants to have a certain diagnosis, you need it to get help. my psychiatrist has said he is 99% i have asd, however he cannot give me a diagnosis, and my school refuses to test me because i’m “too good a student” and i’m slowly dying.
also im not a good student. i have an e in math, a d in government, i failed engineering bc the class was so god damn loud and anxiety creating. my education is impaacted.
when it comes down to it, to be honest, so much of this has to do with the stigma regarding mental health in general, and especially regarding autism. people are so scared to have an autsitic kid - i’m 15 years old, if you can love me w/out the diagnosis, you can love me with it. i’m the same kid. My mother grew up with an autistic brother yet she still wouldnt want an autistic child. schools assume that an autistic student cant be functioning without special classes and a helper and a bunch of accomadations - some people need that, others don’t. it doesnt matter b/c everyone is entitled to the resources neccessary to thrive, and everyine should be treated fairly.
im a kid who grew up non verbal, ive had social skills drilled into my head by therapists bc i apparently “didnt have them”. up until this year i had good grades, i flew under the radar and suffered, and when i finally reach out for help, everyone is refusing it because they think i’ve already gotten enough.
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Taking back my life. Chapter 1...
Hi All,
My name is Nathan Militante. Approximately 4 months ago i thought i had it all figured out on what i wanted to do and where i wanted to go in this world. Im here today September 13th 2018 to tell my past self and the other who stumble upon this blog that it hasn't been what i expected. If anything its been the complete opposite of hat Ive wanted. But its funny when i look back on the things i wanted for the future i could never put an actual object to it. I think its always been somewhat of a feeling to obtain. The feeling-of accomplishment, or having done something important in your life, or even knowing that you're on the right path. Also sorry for this whole blog its going to be out of order, I feel its best to just type and let the words flow out, but okay back to the story at hand.
Its the middle of May. Im dressed in my graduation outfit getting ready to proceed through the ceremony. Millions of thoughts racing through my head. Where will i go from here, what will my education look like from this point on, who will i settle down with, will i trip on my way to getting my diploma? As i tried to understand what this day meant i think i started to formulate a plan of action. I think in my mind the idea of a plan always gave me an idea of a direction i wanted to go. And so the day went by and so did the expectation that my plan would develop. But as stated earlier, it didn't...or so i thought.
Speed up to today and I am currently working for Washoe County Health district as a health educator and disease investigator, I am currently living with 3 other of my best pals including my brother, continuing on with my photography, and in love with a girl i get to all my girlfriend. But yet through all that i still feel empty. Why?
You see my whole life has been a “Why”.
Why cant i just afford it
Why cant i just get this right
Why cant this just be easy
Why cant life just catch me a break.
In saying why all the time i realized how much i had yet to accomplish in my life. but why (see i told you) is it that i’m only 23 and stressing about all of this. It feels as if my life up to this point hasn't been much to celebrate about.
Sure college was hard but it wasn't that hard when your going full time and you have friends in college who are there to push you through it?
Sure rent is expensive elsewhere but our house is falling apart sometimes and my roommates drive me crazy.
Sure I can say i love my job but there are those days when i ponder if its all worth the cause.
Sure i love my girlfriend but at times we dont agree with each other and theres things that we dont get along with.
But thats just it...
In one fell swoop if already named of only a fraction of the things i have neglected to be thankful for... but yet i ask why.
Today is September 13th 2018 and im enjoying a nice lunch of grilled chicken, one banana, and a couple raspberries. Did i mention im drinking this gnarly concoction of garlic, lemon, and water to alleviate my blood pressure? 1 day ago I got the news that my depression and anxiety had come back and in turn raised by blood pressure. 6 hours ago i woke up with the idea that my life would never be the same with this diagnosis, 3 hours ago i was taking a walk instead of my usual run hating my life. and 30 minutes ago i was alone in my house pondering that ever so question i have been asking all my life...
Why?
It was only until our house dog looked at me in a way that made me look at myself. Kind of like that thing you do when you're drunk, high, or on cloud 9 in the bathroom and your thinking to yourself how did you get here and will this ever end. Instead the person in the mirror told me to type. type it all type it out and type until there is nothing left to type. And so Im here now typing and wondering where this will lead me. Its weird the idea of typing is actually somewhat exciting and relaxing. Of course i am also listening to the wonderful styings of Joey Pecarro. But as i type all of this out i begin to see what ive been missing or what has been missing for me to understand what i have. I love my life and where its gone so far. I love the process its given me, the challenges its set out in front of me, and the idea thats its only beginning. In doing so its also shown me how much i have to be thankful for.
First off my wonderful girlfriend. This beautiful courageous funny and loving person has been there for me ever since the beginning. Funny story i actually ghosted here pretty badly a couple moths after we had met. I thing the whole thing was because i was scared of what she would think of me. But she pulled me back into our relationship and time and time again she's pulled me back into the place that i belong. I love her immensely and i truly believe that most of my success wouldn't have occurred without her doing. I owe her a-lot and i hope to show even just a fraction of what she has done for me.
Second my friends. Wow dont talk to me unless you find some friends like mine! Ever since i could remember ive always been the type of person to move from group to group. it wasn't to say i didn't like anyone, i just couldn't find that right fit. And then freshmen year of college came along and in that hustle and bustle of university life... i found them. It isn't safe to say that they dont bug me sometimes but its also safe to say that they have saved me and molded me into the person i am today. I never once in a million years would've thought i would end up with these guys but im thankful for them each and every day.
Thirdly (i dont even know if thats a word, sorry not sorry) my family. It cheesy and a platitude to say everyone should be thankful for their own family, but my journey to liking them was somewhat of a rough road. To begin m parents are divorced so having that strain on the family really distanced me from accepting who they were. Another point to establish is that my family is very tradition on how success needs to be measured. Its “you're going to be a doctor” or “why cant you be like the other kids” and even “in life you need to accomplish things by this age.” Hearing those things really put in a position believing that they didn't care much about me. Only the life i was living. But as the years went by they understood me more and the success i wanted to reach the more they supported me and changed their ways. Today i owe a great deal of thanks to them and the foundational skills of hard work they have given me.
Now of course im thankful for so much more but dont want to bore you with that list. Ill just do it another day (haha). But i think to end this story i want to talk a little about what got me to writing this. Again I am terribly sorry about the horrible typos, organization, and all around messiness this passage has to offer but bear with me. tomorrow will be better.
Just as the title says “Taking back my life, chapter 1″, i really do want to take back my life. I suffer from serious bouts of depression and anxiety and for most of my life its been right there in the passenger seat ordering me where to go. But today ive decided to change that. I think today its not about asking why is this happening to me but rather saying to myself “its going to be okay”. Because at the end of the day it will be. But only if its done on my terms and my time. I know things take time and i know il probably have my days where it wont be perfect, but thats okay. i have to start living my life according to me, and not some mental disease. Im scared, stressed, terrified, and sick of what will happen now but those things keep me alive. Its by feeling those things that i know im moving on in the world. Forget a plan and forget trying to understand why something happens. Its time to take back my life and living it day by day with the ones I love. As for this blog i hope to keep updating it about my journey and the things i want to accomplish, the dreams i have, and the memories i make.
Seneccca said
“It is not that we have a short time to live, but that we waste a lot of it. Life is long enough, and a sufficiently generous amount has been given to us for the highest achievements if it were all well invested. But when it is wasted in heedless luxury and spent on no good activity, we are forced at last by death’s final constraint to realize that it has passed away before we knew it was passing. So it is: we are not given a short life but we make it short, and we are not ill-supplied but wasteful of it… Life is long if you know how to use it.”
Lastly, Im probably the last person someone with depression should talk to, but if you're out there and reading this and going through something. always know there is always something to be grateful for, someone to always know has your back, something you can always fall in love doing, and something to always look forward to. And if you cant think of anything I will always be there for you.
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With having a disease in which such little is known about it I can definetly say, I've got a lot of hopes for the future, especially future generations diagnoses with EDS. You guys know the things I got through with this rather you believe the medical abuse and neglect is real or not others with EDS know that if anything I'm downplaying the extent of it so my hopes for the future is that this condition is incorporated into medical school training requiring a very minimum of one week spent on the topic of EDS and much more in anatomy on the functions of connective tissue as well as connective tissue diseases as a whole being discussed more in school. Another more immediate hope is that schools totally throw out the zebra and horse teaching mindset and quit educating students to only focus on common diseases. Even what little schooling I had it was as if they were telling us rare diseases don't exist at all. They totally discourage us from even thinking about rare diseases. I remeber being assigned to study and write a report on one medical conditon then speak about it in front of the class. The teacher said we could pick any one we wanted. Everyone in the class chose more common conditions like strep throat, upper respiratory infections, breast cancer, and a ddw other more common cancers, heart attack, pneumonia, the flu, diabetes, high blood pressue etc. I went home and searched the web for rare diseases, this was even before I knew I had a rare disease myself. I read up on several and came across one that seemed particularly interesting. Trusomy 13. I wanted to choose someting rare because I feel like the common ones have enough recognition, enough financial backing for research and frankly we're too easy. I wanted a challenge, I wanted to speed the word about an underdog in much news of awareness and to spark interest amongst my peers who may spread the word. Trusomy 13 is one that often takes the life's of an individual on infancy and causes a lot of complications so this is what I chose. The day the teacher went around the room asking all of us what we chose she got to me and I told her. She pauses and said don't you want to try something more common like everyone else? I said no, I like the challange. She said well I would really encourage you to pic something else like how about heart disease? Theres a lot of good information put there on that. I said no that's okay, I like my topic and I'll be able to find enough information on it. She then asked me to speak to her after class. After class she said look, I need you to pick a different topic. I asked why. She said because it's too hard. I told her to trust me I can do it. She then said that conditon is so rare I've never even heard of it in my entire career. I don't know what it is or anything about it and theres no way for me to be able to grade your report on a condition I don't know anything about. That's whan I said well you said we could pick anything at wanted. I picked something I find extremely interesting and that's what I want to do. Besides if you don't know anyting about it you can learn someting new. After a big more of a debate, reminding her several times that she said we can pick anything and that even if it's not common it exists she finally I think, realized she wasn't going to change my mind and caves so that was my report and I aced it. Just because someting is rare doesnt make it unworthy of being taught in school and by telling medical students not to even consider a rare disease in a patient is just setting the patient up for misstreatment by medical personel. One in 10 Americans live with a rare disease so allthough each disease may be rare, actual having one of those many diseases isn't all that rare itself so I hope this mindset is no longer instilled into the minds of students and it's removed from the corricilam.
In addition to changing teaching to no longer encourage students to only look for what's common when diagnosing a patient I believe they also need to crack down on and better educate on how to properly diagnose conversion disorder or what ever word they happen to use for it at the time and really any psychosomatic disorder as a whole. They need to teach then not to use it as a crutch for their lack of knowledge and address their egos making sure they are aware that not everyting was addressed in medical school so they in fact don't know everyting and shouldn't behave in a maker in which they think they do and in these cases where the patient goes years and years with going to doctor after doctor for help to listen to them. I also believe they should ban anyone without a psychology degree from being able to diagnose conversion disorder. If they would like to send the patient for a psych consult or they would like to simply state in the referral "suspected conversion disorder" or please assess patient for a psychosomatic disorder fine but in no way should diagnose it themselves, or write long notes about the patient to try to persuade the diagnosis. If someone were going to trial in court for a robbery you wouldn't allow the plaintiff to talk to the judge and jourey before the hearing allowing them to speak without the defendant present in order to persuade them to rule in their favor before the hearing. They want a court hearing to be unbiased a psychiatrist or psychologist should be able to unbiastly assess a patient and make the decission on their own.
Medical personel should be very throughly taught the dangers of an incorrect diagnosis, espexially a psychological misdiagnosis and the tendencies for this misdiagnosis to follow them around throughout their lifetine even if it was proven a misdiagnosis just because it was a diagnosis written in stone at one point in their life. They need to know how this can totally ruin the care a patient. If they do this and it's a wrong diagnosis they should be required to have all records be amended by law if something like this happens and is later proven to be a false diagnosis. This is why this kind of diagnosis is only safe in the hands of someone who has spent a large portion of their schooling learning it from inside out like a psychologist or psychiatrist. This is my hope for the future. No one should ever have to go through what I went through and every other EDS patient I have ever known has gone through and likely will go through the rest of their life because misdiagnosis it not medical personel use this label as a crutch. A crutch they permenantly brand is with. Conversion Disorder and "I don't know" are not interchangeable and and should not be used this way. If a doctor does this I believe they are breaking not only the code of ethics but also their oath to do no harm and should have their license revoked. They may not be killing a person directly but by labeling them with this because they don't want to deal with it follows the patient around for life, limiting their access to care, prolonging a proper diagnosis, postponing treatment and ultimately taking years off of their life and forcing them to suffer so in the end you have shortened their life and made them live much sooner lives then they would have otherwise because you couldn't work yourself up to say you didn't know something.
Medical field asside, in the future I hope to see massive changes to insurance. Make all insurance equal like that if medicare for all so that more people are having issues with coverage and someting has to be done about it. The flaws in Medicare exposed and resolved. I would like to see the formulary overhauled and at the very least EDS added to it but what I would aultimatly like to see is a person's eligable for a medication no longer based off of the condition they have but based on the symptom they are experiencing. If they remove eligability based on condition, this will remove discrimination based on disorder resulting in people with rare diseases not being denied necessary treatment. Not long ago insurance companies were allowed to deny a person coverage if they had pre-existing conditions but when they took that away the formulary got tighter as a result. This allowed them to insure everyone so they had a physical card stating they had insurance while still denying a large portion of the sickest access to treatment. Obama seemed to try to resolve this. Things were far from perfect but it had improved but then when trump stepped into office to change medicare he ultimately further tightened the formulary as it pertains to rare diseases patients making it so that its nearly impossible to dispute denials. We used to be able to dispute them, a doctor would send in some medical documents showing the effectiveness of a medication, treatment or surgery or explain why we another medication, treatment or doctor would not be appropriate and it would be approved but now it's nearly impossible to have the decission changed when filing a dispute. Now what the formulary says goes no matter what if you're rate and don't have the FDA approval for that medication being used for that purpose causing rare disease patients to be out of luck, forced to be treated with something not likely to work, someting that can cause more harm to the body in the long run, someting that can improve one condition but worsen another or simply not recieve treatment at all so my hope for the future is for insurance to be changed for the better. Not just for the better if EDS patients but for the better of all rare disease patients.
Next I would like more awareness and financial backing provides to the Ehlers Danlos Society and other places needing funding for EDS research as a whole. EDS has no cure and no FDA approved treatments. I would like to see this changed. Very little is known about connective tissue. So little in face that scientists don't even know what it actually is. It wasn't even suspected until 2018 that connective tissue may even be an organ and we still don't know for sure. It was also discovered that nerve endings may actually connect to connective tissue and those tissues are capable of feeling pain from damage to them. It was thought for years EDS patients don't have pain and that that aspect was all in their head until that recent discovery which now ranks it one of the most painful diseases a person can live with. With 2018 being really the tip of the iceburg knowledge about the conditon we are hundreds of years behind on the knowledge other diseases have and hundreds of years behind on research. It's like living with Type 2 Diabetes or Breast Cancer in the 1700's. I would like more awareness, more education in schools as more financial backing to be supplied to this disease. I don't want to have this condition labeled as the most ignored (I used ignored because it won't let me use the actual word for uncared for) medical condition in modern medicine. It has held that title since 1965. It's held that title for 55 years. The most neglected conditon and nothing has been down to change this over the last 55 years. Something needs to change. I also wish that a cap would be put on some conditons for research. Sure a cure would be nice for everyting but if there's a treatment that is extremely effective why not give give a percentage of that money to an underdog conditon. One that doesn't even have as much as one medication to help it in order to help them to try to catch up, even if it's just a little bit.
My hopes for the future are that these patients have all of this. They are believed, they are not treated like a psych case or a burdon, a diagnosis isn't delayed years and years, they have access to treatment even if it doesn't have FDA approval, recognizing this condition as a cause of disability, learning more about it and possibly just one treatment. Awareness goes a long way and it starts there. No one diserves what eds patients go through now and I hope no in in the future has to and they can seek medical treatment without fear, without being sent home worse then when they came, without being left without care, without harm from medical professionals and that they are held accountable but if course this would also involve a change in society as a whole as its not just medical professionals who are only in the career for the money, to get their 12 hours in so they can go home and to take short cuts and the easy way out. There's a lot that need changed but humanity also isn't what it used to be when people took pride in their jobs and wanted to not only get things done but get them done right.
Below are some pictures that show some of this. The last three to together and I'll explain these. It'd the McGill Pain Scale, a scale doctors use to tell them the average amount of pain a person with a speciffic condition is in. It has since been updated but at the time of the study posted in the two lower pictures the bottom scale was used and it's vary similar to the update one. CRPS is rhe most painful condition on the pain scale ranking in at a 42 out if 50. In the study below 273 EDS patients participated in the study taking the same test to measure the McGill Pain Index Ranking. Of all of the participants 89% of them were already on medication a for pain at the time of the study so we're tested based on their pain levels on medication. The results calculated their pain essentially on a good day during the week and a bad day. The average moderate pain (good day pain) came on with a median score of 43 out of 50. The high pain levels or (bad day pain level) median score was 45 out of 50. This was with 89% of them being on pain medications. Could you imagine the scores of they were weaned off of those medications or hadn't been on any medications when they were tested? EDS was not added to the updated McGill Pain Index for one simple reason. That being because patients were on medication for pain so it was considered to have flawed the results.
#myEDSchallenge #myHSDchallenge
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@puppydeathfarts I'm just reblogging cause my rambling is too long for comments
So this is me just... completely off-the-cuff conclusions. Brain storming, so to speak, so I may or may not agree with my own words by the end.
Tumblr DID community is the chillest, I think. Which is reflective of the medium, you consume exactly what you want to and usually in a longer prose form. Paragraphs and stories. Everything is tagged without burdening word count, so its easy to follow and block as desired. But since people can be so selective, it can be hard to connect with people if you dont already know them. As a result, its a good place to just... vent. Scream into the void, and occasionally it'll scream back. Usually reassurances, with the rare jerk. But its not a great place if you're seeking to be heard and responded to. Its like sitting in the same room with a bunch of people: sometimes its quietly coexisting with friends and sometimes its lonely and alienating.
Twitter DID community is... well, the comparison isnt great, but it feels like high school. Lots happening all the time. You can create your own clique, but you cant help but overhear someone screaming about some injustice. Sometimes its educational and you're really vibing with what people are saying. Sometimes it feels like an emotional world war. So if you want constant interaction and content to consume, its a good place to go. If you're empathetic or sensitive, maybe... dont. But it does give a sense of belonging, "look at all these things happening, and I can be a part of it!"
Reddit DID community is great for questions, answers, and occasionally discussion. The forum design means its easy for people to browse and interact. If you're new to the diagnosis, its a great way to ask and learn. The problem being is it kinda perpetually attracts that. So my personal experience has been that it really focuses on alters being different people. And people cling to that and are very vocal about dissenting opinions. So if you need someone else's opinion on something, and you need answers that might require longer answers, thats where you go. But if you're working on integration, maybe dont. Maybe as your own post, but that POV isnt taken well in comments generally.
Tiktok DID community feels like an amusement park to me. Is it real, is it not, who knows? Its got people crying "look at me!" just as much as it has people hunting for an attraction. Honestly though, i havent used it much. I occasionally find the relatable content, but it by and large feels too... showy to me.
Discord DID community feels like a collection of clubs. Sometimes you find a great place with great people and you learn a lot. Sometimes its just kinda... weird. Sometimes theres a distinct feeling of "I'm in the wrong room and I dont belong." It CAN be a good place to connect; you just have to find the right place. But it can also kind of... consume you. Its easy to get stuck talking to people for hours, hunched over your phone or computer, instead of like... taking care of yourself and doing productive things.
I cant say anything about Facebook. I've never joined a group, because I am far too scared of people IRL learning about my diagnosis. I understand there's closed groups, but I dont know how they work.
Youtube feels like a convention. You can find what you want to learn, but there's not much of a community. Everyone you meet there, you'll probably lose touch with once you're done unless you trade socials. It also doesnt have much in the way of checking how reputable someone is. When you're at a convention, youre just sort of trusting these are professionals. Same with youtube. The speaker rarely speaks poorly of themself. And with youtube, the speaker can even control responses in the comments. Both of them require you do your own research on the person outside of that medium in order to understand who they are.
So, in my personal conclusion, each site has their own uses depending on your needs and stage of recovery. Reddit is a great place to start after diagnosis. Youtube is too. But both require you to do your own research as well. They're generally good foundations to start at though. Twitter is a good way to see youtube speakers out of that element, and as a result, its an easy place to touch base with the community. But its also reactive by nature, so it might not be a good place to go if easily triggered. Once you get far enough along in recovery to know yourself a bit, Tumblr is a good place to go to start cultivating the environment you need to grow. For some, they need those alter lists to have the courage to explore their system, but others need to connect with people working on integration. You can find both here, but you need to cultivate your experience. Discord can be great to connect on a deeper level and really make friends, but you have to be even more careful there to find the right space for you. And it requires a degree of self control, as do any of these sites I suppose. None of these will do the hard work for you obviously; you gotta go to counseling and read the books on your own. So all of these are supplemental at best.
So... thats a lot of words without saying much, I suppose. Rambling is one of my skills. I'm absolutely open to other people's inputs. This is obviously based off my own experiences and a ton of conjecture. I might do some research on these websites in earnest later, cause web analytics is fascinating.
It just blows my mind how completely different the DID community is on different social media. Its like they each have their own culture, and its so weird. Interesting too, but also baffling. I feel like I need to study this.
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