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odinsravendutchess · 2 years

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My anemia…

Is so bad I have to take a total of 130mg of iron a day per my immunologist. The man knows about my bleeding disorder and truly gets what’s up!

In other news, this gif explains how I feel over tasting a pop tart with butter on it after it comes out of the toaster. It’s delicious! I have low blood sugar right now though.

#the dutchess #the dutchess has spoken #chronically ill #type 1 diabetes #type 1 diabetic #pancreas transplant #disabled #disabled mom #disabled life #disability confessions

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thoradvice · 3 months

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you don't have to be glad that it's not worse. that goes for everything. disability, trauma, mental illness, grades, finances, whatever. you're /allowed/ to be upset that things are the way they are. you don't have to be grateful for your situation - bad is bad. somebody else's suffering doesn't make yours less painful. it's okay to be angry

#my mom tells me that my disability could be worse all the time . god i hate it #disability #chronic illness #trauma #recovery #thor speaks

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peggy-sue-reads-a-book · 1 year

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With the holidays coming up this is everyone’s reminder to

Ask little kids if they’d like a hug first

If they say no, verbally affirm the reasonable shit you just heard. “You said you wouldn’t like a hug. We won’t hug.”

You don’t even have to redirect with a high five, even though that’s fine. Touching isn’t for everyone.

Do not say upsetting things like “where is my hug?” Clown, you don’t own hugs.

It is fine to model consent by placing boundaries on touch. “Let’s wash your hands before we cuddle.” “I’m leaving this couch if you continue to yeet your foot into my pregnant belly.” “that was fun but I’m going to take a break now.”

Touchy children are not inherently sweeter. Love languages exist at any age.

Some kids like touch but not eye contact. A hug from behind is a good one or “let’s close our eyes and squeeze really tight. Ready?”

I’m dead f*ing serious there are people who want your physical affection so badly but need you to modify your approach. Just like there are people who want to get into buildings but need ramps.

Don’t comment if a kid shows affection to another adult but not you. They’re weird like that but you don’t have to make it weirder.

#holiday psa #consent #you gotta do it #hugs are cool but not mandatory #disability awareness #mom posting #kindness

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plague-parade · 11 months

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if upon being told about someones illness/condition, your first thought is to say “have you tried X?” i want you to step back for a moment and think to yourself “if i thought of X after hearing about this condition for the very first time, the person who has this condition very likely has thought of this and possibly tried it already”

we are tired of constantly being told to try the same things by people who didnt know our condition existed five minutes ago.

you dont need to offer any solutions or try to fix us. i know it might seem like a polite thing to do or that it shows you care, there are other ways to show us you care.

#thought of saying something about being told ‘get well soon’ too but idk if im ready for that possible backlash lol #my mom (able bodied) gets really mad at me when i say this kind of stuff is annoying #so i just assume all able bodied people would react that way #actually disabled #disabled #disability pride month #disabled pride month #disability pride #disabled pride #physically disabled #chronically ill #chronic illness #actually chronically ill #cripple punk #cripplepunk #cpunk

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autisticcharliecale · 2 months

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Ya know what shout out to butches who wrestle with our butchness because we don’t fit the mold in some way. Butches who aren’t physically strong or naturally caretaking because of physical disability, who need to be cared for, who can’t hold open the door for a femme. Butches with long hair, butches with big hair, butches who express their culture via their hair. Butches who’s masculinity is shaped by their culture, who’s masculinity doesn’t fit the white eurocentric mold. Fat butches, butches with curves viewed as feminine, butches who don’t have skinny, boyish builds. Butches who don’t want to be sexualized, butches on the ace spectrum. Butches who don’t have traditionally masculine interests or mannerisms or whatever. Effeminate butches. Butches who take inspo from gay men. Butches who like the occasional dress or skirt. TRANSFEM BUTCHES!!!!! And any other butches who don’t fit a certain mold!! All butches are good butches and we are all valid.

#I’ve wrestled with butch identity for a long time #Because I’m physically disabled and I am also Jewish and I love my hair and masculinity is Different in the Jewish community #I relate to how gay men do gender and am not traditionally masculine #I am fat and have a “mom bod” type of build #Etc etc #I have put so many standards on myself but why? I know who I am better than anyone. And I know I’m a butch!#It feels right and comfortable on every level #And that is what matters!!! Send post!#Kitty meows #Butch #Butchness #Butch lesbian #Butch identity #butch positivity

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t4t4t · 3 months

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Idk new post bc the last lost traction, no donations in a week. We need 450 for the rest of February, 450 for a deposit, and 950 for March, 50 for the rest of the utilities. We were homeless since Aug 2020 excepting 4 different months whose places fell through for various reasons, have to get rid of the van we were living in because it's falling apart, Collie got FFS December 28th, she's recovering well and maybe could do something with a car if we had a better car, given her ability to drive. I still haven't found much work but I'm still looking. Anything helps.

paypal.me/NoraEstherRose

venmo: nora-esther-rose

venmo: Leah-Esther-Rose

#i wish i could get a loan ? i hate how little my parents have ever helped me. we rely too much on collies mom who can only do so much #we both have various disabilities we still are in the process of understanding.... i hope i get adhd meds soon. :(#we havent been able to afford better anti depressants for over a week now. i hate feeling dependent #i wish it were a prescription.... stupid world. stupid time

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lifblogs · 6 months

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Let’s stop celebrating pain. Let’s stop being proud of chronically ill/disabled people when they “push themselves.” Let’s stop acting like listening to your pain and your body and your needs is giving up. Ableists, just stay out of the fucking discussion. We’re not your trophies to put on pedestals when we do what you want or “act normal,” and we’re not your garbage to be spit on when we have bad days.

#actually disabled #disability #yes this post was inspired by my mom #being an ableist bitch today

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chronic-counter-user000 · 3 months

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PRAISE THE FUCKING LORDS WE HAVE A CANE

CELEBRATION

MY FIRST MOBILITY AID

#although my moms like “we can share it!”#no the fuck #we can't #n she's like “keep it in the car i don't want my parents commenting on it”#bitch do you think I CARE WHAT THEY THINK #chronic illness #chronic fatigue #chronic pain #invisible illness #actually chronically ill #chronically ill #heds #hypermobile eds #disabled

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oneday-yourside · 10 days

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Harry's world/Bad end

Inspired by Christina's world by Andrew Wyeth

#I dont think people talk about the bad end enough #this is the social murder game you guys #i dunno #my health took a bit of a decline recently and my doctor forgot to get me a refill on my meds in time and it got me thinking #disability puts a person in such a vulnerable position #it doesnt matter how well Harry solves the case or how upstanding of an officer he tries to be #one drink is all it takes and he is left to die #he cant even run after them anymore... he doesnt even know where he lives #he's nothing but an addict to them #reduced to an animal... grovelling in the dirt #used for all hes worth and then thrown away once he cant work anymore #ive written about the bad end before and ill get back to it(after my fic about his mom is done) when i get the energy for it #its just so compelling!!#does anybody hear me???#disco elysium #harry du bois #disco elyisum fanart #my art #illustration #also some people in the fandom do NOT see disabled ppl and addicts as people and it shows #ITS THE SOCIAL MURDER GAME

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dumbasswithapen · 4 months

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can we just listen to Disabled people when they say what accommodations they need??? Like it really isn’t that hard to just take someone’s word on what is best for their own body! Whether it’s more or less or different than what you deem they need it really isn’t your place to say!!!

Sometimes, people need more than they show! Especially if they’re used to being in pain all the time, then they won’t always display that discomfort.

Sometimes the accommodations someone needs are different than what you assume. A friend who struggles with noise sensitivity may ask for you to turn on a different type of music, instead of turning it down, and if that is what they express they need you don’t have to say “oh no I can just turn it down!” and ignore them saying that that isn’t necessary because your idea of noise sensitivity is different than their own experiences and needs.

And sometimes people need less than you try to provide! Or simply don’t want that accommodation at the time! And here’s the crazy part: this applies even if what they say to do could hurt them. Obviously this isn’t a rule for every situation*, but for some it absolutely is. If your friend wants to tag along for, say, a hike, and they have joint pain it isn’t your place to add in “oh no but they can’t do [the hike]! They’ll be in pain! We have to do something else to accommodate them!” If that person expressed a desire to go, especially if offered other options prior that wouldn’t hurt them, let them live. Let them do the thing that puts them in pain, because Disabled people don’t always want to be shoved into a little box of safety. Absolutely sometimes they do, and some might always want to, but if they don’t, then let them make their own choices for their body. Just as anyone else does. You go out and get drunk, even if it gives you a hangover. You go skating even if you’re shit at it and scratch up your knees a bunch. Just because someone is Disabled doesn’t mean that they can’t do the same thing and do that fun thing that hurts them.

I don’t know if I’m displaying my point how I want, so here’s my own example: I am allergic to the cold. Anything below 60 degrees (f) I get hives. Any water cooler than a fucking warm shower I get hives. My joints don’t do great when it’s cold out. This does not mean that when I say I want to go swimming, you can say “oh but you can’t you’ll get hives!” Or “no you can’t do that you’ll be in pain!” Because. I know that. I know that. I know my Disability better than anyone else can, and I can ask for accommodations I need. I am not a child to be wrapped in bubble wrap so I don’t get hurt. My body is my body and I can do with it what I want, and face the consequences. Likewise, just because I said I wanted to go swimming doesn’t mean that when I don’t want to go out and muck around in the snow it is anyone’s right to say “oh but you wanted to swim earlier, so obviously it isn’t that bad for you!” Or “oh it’s fine it’s not that cold! Just wear a sweater!” Because at that time I need and want different accommodations and that should be listened to and considered accordingly, as far as it can be in that situation.

Seriously. Just listen to us. We are in our own bodies. We know ourselves. It really isn’t that hard

*a situation where this point would be null is, for example, a situation where the person has been peer pressured into doing something, or one where you know the person well and know that the endurance of pain is a self-harming behavior

#disability #disabled #information #shi rambles #ableism #accommodation #cold urticaria #chronic pain #Like I get that my mom wants the best for me but I really know myself #If I avoided getting hives I’d be avoiding swimming at all. I’d not be having cold drinks or foods. I’d be not going outside #Even if I’m complaining about being in pain it doesnt mean that I don’t want to do the thing. It just means I don’t want to be in pain.#I know that won’t change but it’s not the change that matters it’s the expression of it #idk #actually disabled #ugh I don’t like wiriting that i feel like a fraud cuz im not disabled “enough”#It’s so fucking stupid I hate my brain

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odinsravendutchess · 2 years

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2nd Bariatric Surgeon Fired…

So I had to have a special swallow study done for my bariatric surgeon. It was no walk in the park.

I live 2 hours from the hospital it was going to be done at. So I made the appointment and was told to be at the hospital for an 8am appointment. I was supposed to be mailed paperwork but they didn’t do that.

I drive 2 hours 1 way to be told my appointment was at 11:30 so I had to wait. Not happy, but fine! I was going to at least get my info so I could look at my chart. So I got all the info to do that.

I look in my chart to find the labs I did 2 months ago were low. It was my iron. I have a medical history of a rare bleeding disorder that pairs with anemia. It’s called immune thrombocytopenia purpura aka ITP.

I had a hysterectomy and I’m 37. There is not explainable reason as to why I have low iron other than something is going on that we don’t know about causing this.

I had my swallow study done. Everything was normal.

The bariatric surgeon didn’t think it was a big deal and the surgeon’s nurse lied about what she communicated to me in my chart.

Every call or email is saying I had a call or email with the surgeon. I didn’t talk or email the surgeon. I called or talked to a receptionist or nurse. I have only talked to the surgeon once. The hospital did that to bill my insurance more.

So I told the “bariatric coordinator “ what happened. She disregarded me entirely and was acting like I was the problem so I hung up on her and emailed the bariatric nurse to tell her I was firing them.

Then I filed a grievance with the medical facility explaining everything that happened. They called me back and they want me to report it to the hospital campus, which I am going to do here in a moment.

The bariatric nurse emailed me back and tried to say she didn’t falsify anything even though she did. She also tried to say she didn’t call but emailed it to me, which I didn’t ever get an email over my iron levels.

And now I am upset with the bariatric surgeon because she wasn’t taking my health issues seriously.

If my iron gets any lower I will be in serious trouble, we’re talking being admitted, (I don’t get to be in med/surge, I am a direct admit to ICU), and transfusions. I currently can’t have surgery at all because I have a high risk of complications just from my low iron levels alone.

I got my “Dream Team” of doctors on it though. I have my PCP (internal medicine), Endocrinologist, Gastroenterologist, and my Immunologist looking into it.

My Immunologist will figure it out in like 2 minutes. He is crazy super smart and has worked at a transplant hospital before starting his own practice. My labs indicate low iron due to chronic illness (from my research) meaning my iron needs to be monitored closely for the rest of my life. I see all my “Dream Team” doctors in the next 2 weeks.

Why am I posting this;

CALL OUT THOSE WHO WRONG YOU, ESPECIALLY THOSE WHO HAVE YOUR LIFE IN THEIR HANDS.

As health care professionals, we are human. We are not gods. We are not above you. Every life is worth caring for and supporting. Every life matters. Patients are not pay checks and to treat them as such is beyond despicable and unforgivable.

I am a very aggressive health care professional because I treat my patients like family so if someone tries to give my patients or their families (I’m specialized in pediatric high acuity more specialized in rare illnesses) a hard time, I will have it out with them.

As a patient I am very aggressive to get on top of things and to be compliant because at the end of the day, how can my patients and their families trust me if I don’t practice what I preach?

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sag-dab-sar · 3 months

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DO NOT FUCKING TOUCH MY WHEELCHAIR.

IF IT IS IN THE WAY ASK ME TO MOVE IT.

NO I DO NOT CARE THAT I WASN'T SITTING IN IT.

IF YOU WOULD NOT PHYSICALLY PICK ME UP AND MOVE ME IF I WAS IN YOUR WAY THEN DO NOT DO IT TO MY WHEELCHAIR.

WHY IS IT ALWAYS HOSPITAL STAFF WHO HAVE NO FUCKING RESPECT HOLY SHIT.

I WOULD HAVE SAID "Please don't touch my wheelchair I will move it out of the way myself" BUT SHE DID IT SO SUDDENLY I DIDN'T HAVE TIME.

SHE ALMOST TOOK MY WHEELCHAIR OUT OF MY REACH IN A WAITING ROOM.

YOU ARE TAKING MY LEGS.

I HAD TO PHYSICALLY GRAB IT BACK FROM HER BEFORE SHE MOVED IT OUT OF MY REACH.

SHE DIDN'T EVEN APOLOGIZE.

SHE WAS JUST WALKING BY SO I WOULD HAVE HAD TO ASK STRANGERS TO GET IT FOR ME.

THATS HUMILIATING.

LET ME REPEAT.

THATS HUMILIATING.

FUCK OFF.

#i found some non-injury spikes #seems they can be taken on and off #im also going to see if i can use some dont touch embroidery #i need to be more assertive #with #''dont touch my chair''#instead of #''please dont touch my wheelchair''#i need to be firm #i was so angry i wanted to cry #i text ranted to my mom while i waited #cpunk #cripple punk #disability #wheelchair #wrote this while sitting in waiting room trying not to boil in anger

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ionlytalktodogs · 2 years

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Ppl are always like “it would be so much easier to be disabled if society wasn’t ableist” and in a general sense they’re very very correct but it would also drastically improve my life if my immediate family was just like…ten percent less ableist. Like that’s all I’m really asking for. Maybe just! Don’t make a disgusted face when I use mobility aids! That’s it that’s literally all I’m asking for.

#all the work I’ve done #attempting to love myself #is destroyed every time my mom says “’wouldn’t it be better to just stay home rather than let people see you in that chair?’#literally just. dial it back like 10% please and thank you #that would improve my life so much dude #disabled #disability #mobility aid #wheelchair user #wheelchair #physically disabled #chronic pain #cane user #ableism #my ramblings

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leciraofthewilderness · 7 days

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So, despite some faults, I really enjoyed totk, and on its anniversary I want to say something about it. Other people have said similar things before but it’s really important to me and actually a big part of why the story of totk was meaningful to me, so I want to also say it:

Zelda needed to come back from draconification. The story needed that. It wasn’t lazy and just ignoring “consequences” because (imo) that was the *point*

The point is to feel like there are going to be terrible consequences and then say actually, no. You can come back from this, with the help of other people.

To me at least, that was the theme of the whole story.

If botw was about how the world goes on past loss and grief and starts to heal (how flowers grow in the ruins and the world can be beautiful again, be worth saving, even if it has changed)…then totk was about a more personal kind of healing.

The weight of the world should not be on your shoulders alone…you, alone, should not have to fix everything…you should not have to sacrifice yourself, but when you do, someone will be there to save you from it.

This turned into a really long ramble so:

You (Link) gained so much and now it’s gone. It feels like you’re back to where you started and yet you know you have to do it all again…you were weak and you failed and you’re weaker now…but

You go down to the surface. Monsters swarm across it once again. Other people are fighting them too though. You help, but it’s not just you…

You go to the Rito, the Gorons, the Zora, the Gerudo…just like with the divine beasts, there are friends who help you save each region. But this time, part of them comes along with you when you leave. It’s nice, you realize, the first time one of them protects you from a monster you weren’t prepared for. You’re still weaker than you were before, but someone has your back…

When you go up to the sky you see a strange new dragon there. There’s something about them that feels familiar. You try not to think about it.

You go down to the depths too. It’s terrifying at first. You hate it. You only want to get what you came for and get out of the dark….but slowly, the light grows. You get stronger. The dark feels like a challenge you can face (and someone has your back).

There are spirits down there. You don’t know when they’re from, but some part of you wonders…are these all the people you let die in the Calamity? (You help them find rest from their wandering. The weight on your shoulders feels a little less heavy).

There’s so much gloom. The first few times the sky turns red and hands chase you (a reminder of what you’ve lost, how you failed) you just run. Eventually though, you have to fight. It feels like the (second) worst day of your life again. But you manage to get free of the grasping gloom and stand and fight, as wild and desperate as it is. Beneath the manifestation of your worst fears, there’s another thing to fight, but this time it has a face (a voice in the back of your head says…you know this isn’t all on you and your failure…it’s really Ganon’s fault right?). You get through it.

At every turn in your travels, it seems like something reminds you of Zelda. Her passion, her curiosity, her kindness. You miss her.

At first, the tears you find reassure you. She may be in the past, but she’s safe. She’ll come back somehow…but then you hear the word draconification for the first time. You want to believe she wouldn’t do it but you know her and the fear sits cold inside you. (Zelda is a lot of things. She’s been allowed to be more of them, since she was freed from her hundred year battle, without her father holding her back. But deep down inside her, there’s a vein of self-sacrifice that still runs strong. It’s what saved the world before, after all).

She did it. She really did it. She’s gone from you (from Hyrule) forever, and it’s all your fault. If only you hadn’t failed so utterly in the battle (you can hardly even call it that) under the castle. If only you’d caught her. If only you hadn’t let the sword break. You should have protected her you should have been better it’s all your fault and now she has to live with the consequences, forever. Everything really is on you, you should have been better.

(Zelda POV: you couldn’t call upon Hylia’s power in time, you were too content to let it wither and fade away from you, ready to be free of it. You shouldn’t have. He got hurt, the sword got hurt, it’s your fault…Sonia and Rauru help you channel it again, Sonia helps you learn how to turn back time…but you don’t save her. She dies because you couldn’t save her. Rauru dies not long after. There is no one left to guide you, once again. You could spend years trying to figure it out on your own. But you did that last time. It didn’t work. Self-sacrifice, stepping in front of someone you love, that worked. (You do what you can, to call upon the sages, to help Link in the future, first). And then you swallow the stone. You’ve come a long way, in the past five years, allowing yourself to exist. But in the end, self-sacrifice worked last time. It’ll work this time too.)

You (Link) go down beneath the castle. You were supposed to bring the sages but you didn’t. It’s nice, for someone to have your back. But no one else should get hurt to fix your mistakes.

They follow you anyway. They fight with you, against the hordes, against the greatest enemies you defeated together, along the way. They’ll have your back, even if you don’t think you deserve it.

You fight Ganondorf, and then the demon king, in the hardest battle of your life. You think it’s over and then the demon king decides it’s better to lose himself completely than let you win. You’re exhausted and afraid of yet another battle, but up there in the sky, when you’re falling, the Light Dragon catches you (you wonder why she changed her path to catch you, you wonder if there’s still something of Zelda left in there to save). With her help, you win.

And then you’re in some other realm. The spirits of Sonia and Rauru are there. You remember how the two of them and Zelda channeled such incredible power together. You think about Recall. Turning something back to the memory of what it was before, like Sonia said. You stand with them and you allow yourself to hope. Maybe the Light Dragon can remember the form she took so long ago, the person that she was.

And then you’re falling, and Zelda is falling, but this time you catch her. You catch her. She’s back home with you, finally, finally.

And maybe, one mistake doesn’t have to be the end of the world. You don’t have to be perfect. Sometimes, someone else can stand with you, and it’ll all turn out alright. (You can put the weight of the world on your shoulders, you can sacrifice yourself, but someone will be there to catch you, someone will be there to pull you back to yourself, when all is said and done).