My bones are bound to break me

Hi there! My name is Blythe, and I'm a twenty-one-year-old with Postural Orthostatic Tachycardia Syndrome, chronic headaches, Benign Hypermobility Syndrome, insomnia, anxiety, and dysthymia. This is my health-only blog--my main is aknightlight.

[bigskydreaming]

So, I’m a dumbass and should have made this post way before now but in my defense, I was really hoping not to have to this time and also, I’m an established dumbass, this is canon. Anyway, I have my appointment for my last CT scan this afternoon. Its the last step of the process before actually getting the prosthetic joint they’ll use for my joint replacement surgery, it’ll decide whether we can use a premade one or need to order a prosthetic. It’s also the third time this appointment’s been scheduled, cuz I’ve had to reschedule twice already because I couldn’t get the money for the scan together in time (my insurance doesn’t cover this one and this particular doctor won’t take payment plans or installments on a CT scan).

Like I said, I was really hoping to be able to get this all taken care of myself, but I’ve been up for a day and a half, maybe two days, I forget, look I refer you back to the previous part about me being a dumbass, moving on, point is yeah I didn’t make it in time. Haven’t been able to finish the job I was banking on finishing before this cuz the revision process and emails back and forth with the client have drawn out longer than expected and like….I need to sleep now because I only have five hours before I absolutely HAVE to be back up in order to a) make it in time to my appointment if I can actually get what I need in time or b) need to reschedule again before I miss the actual appointment and piss them off by being a no show.

I know this is a longshot and last minute and all that, but figured hey what the hell, tumblr’s surprised me before so worth a shot. If I have to reschedule again, I have to reschedule again. Won’t be the end of the world, just really frustrating cuz I’d really hoped to be done with this part of the process like…a month ago already. And even if I don’t make the rest of what I need in time today and have to reschedule, like, any donations I get will still be super incredibly appreciated and put to good use because I’m still way behind on rent at the motel here and trying to catch up and also, my super fun really damn high insurance premiums are due again in like five days so yaaaaaaay everything is awesome.

No, I mean, its not that bad, and I see so many of you guys reblogging and signalboosting donation posts I reblog from other people all the time, so I KNOW how many of you are tapped out from giving everything you can spare already to me in the past and other people in far more dire straits than I am currently, so again PLEASE do not feel like I’m like, screwed if people can’t help out in time. It’ll be eh, but nothing I won’t bounce back from per usual. My needs are like, there, not gonna lie, but they are not as dire as others and I don’t want to pretend otherwise. Just like…if you can help and would like to, I’d really freaking appreciate it as always, but if not, like….its more than all good.

I’m gonna go try and grab some zzz’s for a few hours real quick and I’ll post an update when I wake up to let people know where things stand and if I’m making it to the appointment today or rescheduling, but again, no expectations just a lotta love and gratitude for how many more people I see in my notifications regularly reblogging donation posts from me and others than I did a year ago. I don’t know if its just my little corner of tumblr or tumblr in general, but it genuinely feels like there’s a whole lot more signalboosting of donation posts in general than there used to be and that’s just really cool IMO and I love you freaking nerds, you’re the best.

https://paypal.me/bigskydreaming?locale.x=en_US

[lostindaydreams-gemz]

*fuck my entire life!* long post

Tuesday, March 26th: Hi everyone, my name is Gemma and I’m so sorry to ask this again so soon from my last post, but I’ve exhausted all my options and I desperately need help.

As most of you are aware, I have been struggling financially for quite some time due to my welfare benefits (Universal Credit & Housing Benefit) being revoked, under the UK’s controversial changes to how benefits are assessed and assigned. And due to my mental health and some unfortunate DWP mess-ups, my benefits have been on and off sanctions for over a year now and I am currently waiting for the DWP to send me for a medical, I’m hoping that this will fix my benefits and offer me more assistance.

However, the process and paperwork for a medical can take weeks and often months to go through. And so far, I’ve been managing to get by with the help of some of the kindest people in the world but right now, I’m living off partial benefit payments of just over £100 P/M. The payment that I received earlier, went towards my rent, leaving me with nothing to pay off my overdrawn account (£172.81) or get groceries. 

I know that I have asked so much of everyone already, and all the previous help I’ve received has literally gone to preventing me being homeless and helped pay my most urgent bills and as much as I despise making these posts, I have absolutely no one else to turn to.  

If anyone could spare any amount to help me, even if it’s just £1/$1/€1, it would literally save my life and keep me warm and sharing definitely helps just as much as donations. Nobody is obligated in any way to donate if they can’t or don’t want to, I know we’re all struggling. Thank you for your help 💖

PayPal • Ko-Fi ☕

[john-marshall]

hey if anyone has a few dollars to send me i’d really appreciate it

i was recently diagnosed with anorexia and i’m looking to be treated for it. i’m using a personal loan to pay for treatment and while i’ll deal with that later, in the meantime, i have to take a leave of absence from my full time job. i do have some savings but with rent, bills, and suddenly needing to buy food regularly (lol), i’m not expecting those savings to last

if you’re at all able to help me out, links are below. i just really don’t want to die because of an eating disorder or get evicted because i’m trying not to die because of an eating disorder.

cash app: https://cash.me/$gaiuscalpurnius

thank you if you can send any money my way and either way if you could reblog this i’d appreciate it

[mad-dyspunktional]

Thirteen-year-old activist with autism wants to close seclusion rooms at schools

"When I asked for help or asked if anyone was still there, nobody would answer," said Alex. "I felt alone. I felt scared."

Nov. 23, 2018

POWHATAN, Virginia — Alex Campbell was just 7 years old when, he says, his principal dragged him down the hall to the school’s “crisis room.”

Administrators reserved the room, a converted storage closet, for children who acted out. He still remembers the black-painted walls. The small window he was too short to reach. The sound of a desk scraping across the floor, as it was pushed in front of the door to make sure he couldn’t get out.

Alex, who has autism spectrum disorder, says he was taken there more than a half-dozen times in first grade, for behavior such as ripping up paper or refusing to follow instructions in class. The room was supposed to calm him down. Instead, it terrified him.

“When I asked for help or asked if anyone was still there, nobody would answer,” Alex said. “I felt alone. I felt scared.”

According to the latest data collected by the U.S. Department of Education, public school districts reported restraining or secluding over 120,000 students during the 2015-2016 school year, most of them children with disabilities. Families and advocates have documented cases of students being pinned down, strapped to their wheelchairs, handcuffed or restrained in other ways. Both practices, experts say, can traumatize children, and may lead to severe injuries, even death.

Alex is determined to close the seclusion rooms for good. Last week, the 13-year-old told his story to legislators, congressional staff and advocates to mark the introduction of the Keeping All Students Safe Act, a bill that would bar the use of seclusion and significantly curtail the use of restraints in schools that receive federal funds. No federal law currently regulates the use of such practices on students.

“We believe schools should have a safe environment for students to learn and grow,” said Rep. Bobby Scott of Virginia’s 3rd Congressional District. Scott sponsored the legislation with fellow Democrat Rep. Don Beyer of Virginia’s 8th District.

“It’s a civil rights issue,” added Scott, who serves as the ranking member of the House Committee on Education and the Workforce. “Children should not be subjected to practices that are counterproductive, endangering their safety or health.”

Alex tried to keep the “crisis room” a secret.

No laws required school administrators to tell his parents what was happening. Alex says the principal warned him that if he said anything, he would spend the rest of the year locked in the room.

But Alex’s parents said they could tell something was wrong. They noticed unexplained bruises on his knees. He became increasingly anxious. His father Sean Campbell, who works as a data specialist in a public school system, thought it was especially strange when Alex visited the school where he worked and asked where the children got “locked up.” He stopped wanting to go to sleep.

“That’s when it hit me,” Campbell, Alex’s father, said. “He doesn’t want to wake up because he doesn’t want to go to school.”

Eventually, Alex broke.

“He started babbling like crazy,” Campbell said. “‘I can’t go back to that room. I can’t go back.’”

The idea of the school not notifying them appalled Alex’s mother, Kelly Campbell, who has taught in public schools for 11 years. “If a child falls on the playground and bumps their head, I’m obligated to call the parents,” she said. “I’ve been told that in every school I’ve worked with. Something like that could happen to Alex, and nobody has to know about it? Like it’s some dark secret?”

While a landmark piece of federal legislation called the Individuals With Disabilities Education Act, or IDEA, mandates that all students with disabilities are provided with a free public education tailored to meet their needs, regulations governing the use of restraint and seclusion in schools vary from state to state. Many states don’t require school administrators to notify parents when their child is restrained or secluded. According to a recent analysis published by the Autism National Committee, only 28 states provide “meaningful protections against restraint and seclusion” for children, including those with disabilities.

[saintjohnswell-deactivated20190]

guys this is so fucking important. The usage of “crisis rooms” caused me long lasting trauma as a child and are SUPER widespread. nobody notices. nobody cares. its a very quiet kept practice and nobody cares because its in the name of “helping”. I would be locked in an empty classroom for the entire school day on many occasions. godspeed to this kid. 

[noping-out-deactivated20241117]

What the actual fuck.

[amasriel-rose]

This shit still scars me to this day. Should be outlawed nationwide.

[skinny-goose]

key thing to note, some schools actually have a calming room where you can read and play with putty, listen to music and stuff. so we should replace seclusion rooms with actual calming rooms. they helped me so much just to sit and read until my meltdown was over

[mad-dyspunktional]

100% agree, voluntary calm down rooms would be so much better than involuntary seclusion rooms.

[maraeffect]

hi friends. this is gonna be a donation post, fair warning.

(march 21, 2019) so, i’m an 18 year old trans kid with debilitating chronic back spasms. i’m disabled and it’s suspected i have eds (ehlers danlos syndrome). the past two to three months have been a quick decline for me. this morning, my back pain landed me in the emergency room with my fiancée. due to my consistent pain, i am most likely going to have to quit my job. i also had to call out of what could be my last two shifts this weekend because of my pain crisis. i am virtually bed bound at this point in time. so, i really need help affording basic necessities and medical expenses rn, as well as fees associated with leaving college due to my disability. my fiancée and my parents are helping as much as they can, but ultimately i need help in order to survive rn and not drown in medical/school debt.

i don’t want to drone on. but i’m desperate for at least any sort of help, even just a reblog or a commission.

for commissions, my ko.fi is here, as well as in my bio.

for direct donations, my paypal is: https://www.paypal.me/originofsky

thank you if u read this far, pls reblog if u can. thanks pals 💗

if u want proof, here’s my fiancée and i at the hospital this morning:

[low-on-spell-slots]

Low on Salt, Low on Spell Slots #12: Capitalism

I’ve been jumping from pharmacy to pharmacy the last two months to have enough of my meds as I take it every day and the last time I stopped taking it for tests I could really only walk around my house and even then I spent much of my time laying down and feeling gross and dizzy. Unfortunately, capitalism is trying to mess up my school year so I feel like I did over winter break. Wonderful.

[hate-kill-repeat]

I had more I wanted to do with this, but my body hurts and I gotta rest! Fuck!

[communistbard]

DON’T SKIP PLEASE

Hey what’s up, I’m Rab, I’ve been REALLY out of it this week because I’m dealing with family death as well as a slew of other things. I’m gay, trans, disabled, and pretty fed up with life and hopeless. I really really need help. Rent is due in 3 days, on Friday. I need to raise $805 or I could lose my housing.  PLEASE help me. I don’t want to be homeless.

Paypal: [email protected] (link) Cash.me: $RDonations (link) Vemo: @RHelpers (link)

[communistbard]

Honestly I’m very worried about this. I haven’t made even an eighth of what I need to to keep my housing, my rent is due Friday (TWO DAYS FROM NOW) and like of course I don’t want to be homeless but I’m in mourning and I just don’t have the fucking energy to keep with it. I mean ofc I don’t wanna lose my housing but I feel like I’m barely keeping myself together rn.

[communistbard]

Please help me if you can… I’m sorry I’m not interacting much I’m just in grieving and having a hard time with it….

[sporks-and-spoons]

Yeah….that about sums it up

[femcassidy]

hey folks—im will. im a 20 year old jewish trans man living in the south. i like people, places and things. making this post is deeply embarrassing but as many of you know: im disabled and among my worst problems is endometriosis. i am in stomach-adjacent pain constantly, to the point where ive been about 40lbs underweight for the last two years.

at the beginning of this month i went to the ER in worse pain than usual, and was given shockingly good treatment as well as a referral for a doctor whos going to help sort out a problem that has been destroying my life since i was a teenager (finally!).

problem being my insurance said “fuck ER visits!” and slammed me with this bill. so far, ive already managed to pay off $130 of it and plan on keeping up with $70+ payments each month. but i have two important doctors appointments coming up this week (one for HRT/endocrinology, the other for my progressively more screwed up eyes) and we just paid rent. for reference: this medical bill isnt much higher than my rent.

im certain i can pay off most of the bill myself, but i could really use help so im able to pay it off sooner and stop worrying about how ill afford my upcoming doctors appointments. after rent i have about $30 in my bank account. my HRT/endocrinology appointment isnt covered by my insurance at all, and while the clinic has offered me reduced fees for most things, im afraid of not being able to afford my hormones.

im hoping to raise around $500, which would allow us to still consistently eat, pay our other bills and get this sorted out more quickly.

my husband is currently selling a poetry anthology of 60+ pages for $16 (you can message me for a discount code!)

weve written a gay holmes adaptation that costs $10. a preview is available to be read at that link.

additionally, my venmo is @cabwaylingo and my paypal is https://www.paypal.me/warene

if you donate please feel free to message me. currently i dont have a commissions page but plan on putting one up soon, and in the meantime can provide examples of my professional work upon request. i would love to write you something. (even fanfiction, yes.)

edit: $429/$500! thank you folks 💙🧿

[kipplekipple]

“I’ll take the bus home,” I said. “It’ll save me stressing about the state of the pavements,” I said.

[doorfus]

[Image description: screenshot of a series of tweet from @Robotorium". they reads,

Tweet one: “I have offended a woman with a pram, ostensibly by not forcing the bus companies to also make a space for a pram.”

Tweet two: “Regrettably, I didn’t consider bus design when I made the frankly shortsighted decision to become #disabled”

Tweet Three: “Only a few stops to go. I sit here, callously occupying the wheelchair space with my equally callous wheelchair, and frankly I am steeping in my shame. / If only I’d thought this through, eh? Bloody typical.”

Tweet four: “Fortunately she is dramatically apologizing every time someone edges past the pram, which she refused to fold down. Thank goodness for her persistence, lest I forget my crimes and, I don’t know, relax or something.” /end image description]

[theplantqueer]

at this point i’m barely looking for ~disability inclusion~ i’m just looking for u to Get Out Of My Way

[mini-e]

I made a meme about my disability

[lun4r-fl4r3-deactivated20201205]

The Same Illness Can Effect People in Vastly Different Ways

Nearly all the women in my family have Hashimoto’s thyroiditis. We all have such drastically different symptoms and severities, though, that even doctors had a hard time telling that we all had the same disease.

My mom didn’t know she had it until she was in her 50’s. She picked it up on a routine blood test and never felt many of the symptoms. Medication works well for her, and the only effect is she feels a little sluggish at times.

My aunt, on the other hand, had it pretty bad. I don’t know the specifics, but she needed her whole thyroid surgically removed to save her health. She’s going to be on hormone replacement medication for the rest of her life.

I have it too. I first started getting severe symptoms when I was 5. Pretty unusual considering this disease generally just effects older people. I had hives all over my body for months, all my joints had swollen painfully, and I was always sleeping and barely eating. I’ve only ever found one person that experienced it like I did, and it was in a rare case report from the 90’s. Thankfully I’ve been mostly under control with medication, but sometimes my hair falls out and I sleep for 15 hours a day. I’m doing better than I was, though.

So when someone tells you they have an illness, don’t judge their experience from what you’ve heard before. Don’t even judge based on your own experiences with a condition. Every person has different problems and different severeties of their chronic illness. Heck, my moms current symptoms are so far from my own that we have practically no shared experiences. Listen when someone tells you why they hurt, and never tell them they’re wrong for not experiencing it the same way you know.

[waroverdeadroses-deactivated201]

“Stop making me laugh, I’m trying to filter and I’m going to fall off my stool!” (Yes, I’m not wearing a lab coat. It’s hot in here and this isn’t a lachrymator so 🤷🏻‍♀️) I have so many thoughts about disabled people in STEM fields. I currently work at a University as a post grad organic chemist. As a disabled person (Hypophosphatasia and co.) I’ve noticed that a lot of accessibility issues are not only workspaces but research and science as a whole. Our education system is flawed and results in scientific research being available, but unreadable and incomprehensible to the average person. The lack of diversity in STEM, results in the lack of accessibility when it comes to being able to read and understand not only relevant research, but sparking passion and creativity in young diverse youth. So much of healthcare is learning to advocate for yourself, but if you are blocked from research despite it’s availability it creates a roadblock to progress, resulting in wasted time with healthcare workers that could be used to help people find solutions and treatment options. Healthcare starts with privilege but doesn’t have to end there! My goal as a research scientist is to create new science, but also contribute to the conversation about making science accessible. Help people understand it, and help them contribute to the conversation. Science starts with knowledge and curiosity, it’s not easy. I’m here to break down barriers, so that more disabled people of color can be part of the conversation and contribute. The more diverse voices we have, the more progress will be made. Both sides of the conversation of healthcare need to not only understand each other, but listen and take action. I encourage everyone no matter your education, no matter your place in the world, to ask questions. Educate yourself on how things work. Put yourself out there. Science needs you!

[killbaned]

My Own Feet

Hi, I’m Reese. People that have followed me for a while know about what my life has been like for uh, a long time. For those that don’t I’m going to sum it up as quickly as I can:

I started getting sick when I was 14. When I was 16 I got my first job. When I was 17 I had to leave that job because of it getting to the point that my store manager was sending me home because I was near passing out and he was actually terrified I was going to go down at my register and end up hurting myself or something. (Which yeah was mostly just ‘oh no I’d be liable’, but still.)  My parents got a divorce. It’s been six years and it’s now to the point that my abusive father’s new a wife, a woman I don’t even know, is stalking me across the internet and using anything I say or do against my mom in court to try and get it so my dad doesn’t have to pay alimony.  I finally found a new job after submitting I don’t know how many applications in the beginning of 2018. I had to leave that job after a few weeks because of the same reasons as my first job. I’ve filed for disability 4 times but I’m not going to get it because none of the doctors I’ve seen in two states can ACTUALLY state what is wrong with me, because literally no one seems to know.  I have a swollen lymph node in my neck, a cyst on my thyroid that is getting bigger and a cyst on my right kidney that I do not know the current condition of, PCOS, Interstitial Cystitis/Bladder Pain syndrome, chronic gravel kidney stones; all of which leads to chronic pain, fatigue, insomnia, constant battles with UTI’s etcetc. 

Because of things that have happened in my life I’ve pretty much been paralyzed by fear and scared to move on, scared to try and stand on my own two feet. 

But, for whatever the reason I’m not anymore. 

I’m going to be starting GED classes sometime this month, which I’m in a program with the college for financial aid for, and after I finish classes and get my GED the college can help me or point me in the direction I need for some sort of job training so I can perhaps find something I’m capable of doing with my health. 

I know people are unwilling to help those ‘that don’t help themselves’ and I’m writing this whole post to say I’m finally getting over it and helping myself. What I need right now is some help financially so I can start trying to be more independent while I’m going to classes and looking for a job. I’m uninsured and do not qualify for medicaid in my state, and the free medical clinic I go to can only do so much. 

This is one final cry for help while I’m working towards being able to fully stand on my own. I’m going to need help with gas, I need help with medications and medical care, I currently need tires on my car desperately. I had a tire explode on me back in November 2018 and I had to replace it, and the other three tires are not far behind. 

If there’s anything any one has to spare, 

I have a PayPal, (deadname) a Venmo, and a Ko-Fi that I try to update to show the content I do create when I can.

Any funds go directly towards things I need to survive while I’m sorting my life out. If you can’t donate, please, please just boost this. 

In closing, I just want thank everyone that has stood by me throughout everything that has gone on in my life, and thank anyone that even just reads this all the way through. Here’s to hoping by the end of 2019 I’m in a much better place all around.

[killbaned]

[finger guns] i STILL haven’t heard back from EBT about my benefits getting fucked during the shutdown and my uhhh how u say ramen reserves are getting low lmao 

[barbiesglock-deactivated2020041]

i’m black i’m trans and i broke my fucking arm

i slipped on black ice during the aftermath of the polar vortex and ended up with a distal radius fracture. it’s going to be hell for me to try and recover from this injury while in the freezing cold, and on top of that i have to take unpaid time off from my job now. i don’t have health insurance so with the money i have to spend for the cast, pain killers, doctors visits, and the ambulance – and the hours of work i’m going to miss – i’m going to need at least $4,000. i’m about to have a panic attack right now and it’s hard to type, so i’m leaving my links here if anyone can help me through this. paypal.me/eemanee venmo: @barbiesglock