I Would Probably Have Way Less Diagnoses If The Doctors Had Explained To My Parents And Properly Documented

I would probably have way less diagnoses if the doctors had explained to my parents and properly documented things when I was a baby.

Like, I have some unspecified hip condition, I was born with it. That's all my mom knows. I figure it's bilateral, and that might be why my gait is weird and gods know how many of the other problems I have with my legs, like how one's longer than the other. The TBI I got as a baby was, according to my mom, complicated. All the doctor really bothered with was saying I'd be fine, he didn't tell her a lot of details. Again, gods know how many of my things that could have caused. There was whatever happened when I was five, when a severe allergic reaction (to something I had only been slightly allergic to before and have only been slightly allergic to after) and asthma we hadn't known I had put me in the PICU for days and the hospital for two weeks, then a nebulizer for months and an inhaler for year but never an Epi Pen, which I have questions about now. Apparently I also have something up with my heart.

And we don't have any of this information because the doctors weren't explaining it.

More Posts from Theravenflies and Others

8 months ago

Heads up: If you consistently CANNOT do tasks unless they are at the “Must Happen Right Now” stage, then you have a disability. 

Most people CHOOSE to put stuff off sometimes, but abled people do not consistently feel UNABLE to complete tasks without threat of consequence.

Maybe it’s an executive dysfunction issue, maybe it’s fatigue, maybe it’s chronic pain– doesn’t matter why, what matters is acknowledging it so that you can move forward. Reach out to resources that are there to help disabled people! Ask for accommodations! They’re there FOR YOU, BECAUSE YOU NEED THEM! Understanding and accepting that you have the limitations you have, and learning what can be done about them, will lead to a much more fulfilling life which you absolutely deserve. 


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8 months ago

the way people can stay on their feet for as long as several HOURS truly baffles me, like i can't even sit up for that long without getting exhausted!


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8 months ago

people lots lots lots say " can not control situation but can control reaction " … so want shout out for people who can not , actually .

people who have meltdown because " small " thing go wrong - always bigger than people believe .

people who get angry and defensive when someone try bully and hurt - can not " just " ignore like everyone say .

people who feel actually violent when something upset - who need time and place to go hit things , so that not hurt people .

people who can not understand how stay calm and walk away - who instead get frustrate and say shut up go away .

and anyone else who relate to this - that can not control how react , not so easy like that .

is not bad person to not be able control reactions how people expect .

there is benefits in have skill , but , not deserve to beat self up for not have skill . people should support if or when try learn , but also , should support even before learn , give outlets and patience .

some people will forever have less skill , because brain physically can not adapt and learn right . some people have episodes and crises where control impossible . still do not make bad person . still deserve support .


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8 months ago

wish for smart autism people to STOP saying things like "most autism people actually smart ! ". is not true! is just so erase big part of autism community ! of people like Pixie, and intellectual disability autism people !

STOP say , is not okay ! people like Pixie, people with intellectual disability , are BIG part of autism community ! we deserve be part of own community !

STOP try push out of community, is ableism !


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1 year ago

what's the most upsetting ask you've ever received?

The one from last night where someone who claimed to be pro choice not only approved of aborting fetuses with Down Syndrome. In fact, they thought it should happen with every Down Syndrome pregnancy. I don't even want to post a screenshot of the ask.

There's also the death threats, suicide baiting, and rape threats, but those were for another blog.


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8 months ago

Fuck it I'm taking back the pyro tags and flooding them with info posts myself I'm tired of this shit.

Ask box is open for questions, shared experiences etc


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3 months ago

Hi there! Can you give any advice on how to write someone becoming disabled through a traumatic injury? The Transition phase particularly, the emotional aspect and things to consider and pay attention to? I've been disabled since birth so my journey is completely different to the one my character will have. And while I went through transition phases too they were never going from being abled to disabled but from my condition worsening over the years. I've done research but I figured maybe you have a mod who'd be willing to share some thoughts on this? Thanks!

Hi, you might find this and this post by Mod Faelan useful! You can also check out our #acquired disability tag :-) (smile emoji)!

Mod Sasza


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8 months ago

Reminder that people who compulsive liars/stealers are not bad people. As a recovering compulsive lier and stealer I had to do that to fucking survive. I lived in a horribly abusive household and needed to steal, lie, amd cheat the game to be able to exist in it. Most of us just need help/ are just like that due to trauma. Stop using us as an insult.


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8 months ago

if you’re able bodied pls give up your seat for us cripples if there aren’t any open. you can’t even comprehend how difficult and painful it is to do even so much as stand for extended periods of time


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8 months ago

Activities to cope

Activities To Cope

There are many ways to cope with pyromania.

A few activities one can try that are relatively harmless are:

- watching fireworks

Be it watching videos, or watching them at any events near you

- watching chimney fires

There is always, if you have it, a channel on tv just for a chimney fire, there are plenty videos on YouTube for just that, and if you have one yourself that's even better. Of course this can extend to bonfires and campfires as well.

- watching candle flames

Safely lighting candles in your own home is a very easy accessable activity. Tea lights and other candles are pretty inexpensive and easy to find at dollar stores along with lighters and matches. I recommend scentless candles.

- watching flame art

There are many videos on YouTube around artists who involve fire in their craft, from flame eaters to charcoal artists or match artists and more.

- burn paper scraps or old homework

Safely burning small bits of paper or papers that no longer surve a purpose to you like years old assignments, preferably doing so over an ash trey or better yet in your backyard, and watching the flames eat away at the paper can be fine.

- igniting a lighter

I mentioned this one in a few previous posts and it's one I do frequently myself, turning on a lighter and watching the flame it creates. Be careful not to ignite it around anything flammable and if you try touching the flame do not let your fingers linger on it long, a short motion over or through the flame is relatively harmless. Though the slower you are and the more you linger a surface burn on that spot will show up. So be very careful.

- watching fire on the news

There are (sadly) always reports of house fires and forest fires, you can always turn on the news and see if there's a report that day or search for old recordings of such online.

- the gas stove.

This one only works if you have a gas stove, and it's one I urge you to have a lot of caution with. But turning on the gas stove and watching the blue flames on the burner can be alright. In fact you can cook something with it like popcorn or eggs if you feel like it. snack bonus!

- hot coals

Hot rocks, hot packs or anything that heats up if you don't have access to hot coals can be fine. While none of it is actually fire, you do get to feel the heat and warmth of something and for some this can be an okay fix even if temporary. Please be very careful with what you put in the microwave or leave out in the sun.

Activities To Cope

Are there any activities you do? Do you have a favorite?

What other ways do you cope?


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theravenflies - Listen To ALL Disabled People
Listen To ALL Disabled People

Raven, he/him, 20, multiple disabled (see pinned for more details.) This is my disability advocacy blog

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