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theparacosmic

show affection by literally just laying on me. you can’t crush me. my need for pressure stimming is too powerful

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spoonie-central:
“I was only confined before my wheelchair.
”

spoonie-central

I was only confined before my wheelchair.

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thebootydiaries

you: *opens my audio biography*

me: hi welcome to my audio biography.. chapter 1.. [begins screaming for 4 hours]

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I read that payments will be given out for ssdi and ssi (because they passed this law making sure we wouldn’t get screwed blah blah) but food stamps would be impacted.

Don’t quote me tho

@anerdykat

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ampervadasz

Be free !

hahahahahahahahahahahaaaaa

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it-is-ok-i-am-ok

I have this same exact thing for my rats and we have talked about getting the second level because they’re little assholes. We always come to the conclusion everytime “theyre gonna find away… they’re just gonna.” WELL HERE YA GO FLYING RAT BUSTIN THROUGH WALLS AT YA

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showerthoughtsofficial

It’s said that 50% of marriages end in divorce, but no one mentions that the other 50% end in death.

it-is-ok-i-am-ok

I quit this site

i had to hold back my gasp/laugh so i didnt wake anyone up  damn you tumblr 

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autoimmuneamy

“Do you want to talk about it or be distracted from it” is honestly the best thing you can say to me when I say im sad/in pain etc.

it-is-ok-i-am-ok

I usually say “would you like to talk about it, just have me listen, validation or distraction?” There’s so many different forms and every person prefers something different. We’re usually just taught that talking about it will make us feel better, but for many that is not true.

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the struggles of being a closet ace

fuckyeahasexual

girl: omg look at this pic *picture of a shirtless boy* mmmm so hOT

me: ??????

girl:

me: ¿

girl:

me: *sweats nervously* uhh yeah very aesthetically pleasing to the eye of the beholder

me: wait what

brain: you aced it

it-is-ok-i-am-ok

Bruhhhhhhhh

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EvWe assume it is, I mean my doctor never wanted to diagnose me with it because “you have enough diagnoses” LOL, but I got my later doctor to write it because she’s like “cfs comes with fibro so obviously you have it” doctors LOL.
That’s why I tend...

EvWe assume it is, I mean my doctor never wanted to diagnose me with it because “you have enough diagnoses” LOL, but I got my later doctor to write it because she’s like “cfs comes with fibro so obviously you have it” doctors LOL. 

That’s why I tend to stay away from any anti-depressants, anti-anxiety, anti-seizure etc. I pay attention to the chemicals. We are usually a lot more sensitive (obviously) to things and that includes medicine. So someone on an anti-depressant may feel a wee bit tired but we’re like out for three months. I finally got adderall for my fatigue and adhd but the side effects holy shit no. So I’m just starting provigil now. 

So, I was originally prescribed vicodin back when I was 18 (little bit before opiod crisis). My pcp gave me 24 pills for my arms being banged up and hurting. I made those babies last me a year and discovered they helped me through my flare. I stopped going to her and asked for vicodin from my rheumatologist (the dude that told me i have enough diagnoseses). He shut my ass down quick. So I went a year with NOTHING which was hell. Finally I set up with a new pcp (after lots of reserach and recommendations) and he gave me 6 pills. Made them last forever again. Then I moved to middle of nowhere vermont and just decided to take a chance and go with the pcp there. 

IMPORTANT FOR ALL SPOONIES:

I went in there completely out of vicodin because im jsut bananas. I said hey I’ve been taking vicodin for years and if you view my history it clearly shows I don’t abuse them (make sure to send along all of your medical history. The proof is always in the pudding and they love seeing your past rather than just a stranger they don’t know if they should give meds to or not). The nurse said,

“We don’t do opiods in the facility.”

I knew she was lying to my face. So I said okay but just have the doctor look over my medical records. After some time the doc came in with like a thousand page book (aka my records) and said aye you’ve done mighty fine, you’ve shown you don’t abuse and you make them last long so sure here ya go.

I had to sign a government paper (wasn’t required before) and do a pee test but then i was on my way. 

I think important things to say, “I mean I’ve been trying every medication I can for in the moment emergency help and I can’t and don’t want to go to the ER every time. I will work with you in any way I can and I just want to help create a better quality of life for myself” 

“Quality of life” 

that’s a big term that really makes a doc listen to you. You gotta pay your dues, unfortunately. They’re gonna guinea pig you and try to get out of it, but in the end they may help. You can usually tell if they’ll help by how they speak to you and if they treat you like a human being. If they aren’t doing that leave them in the dust.

Biggies:

-eye contact (cops and doctors love to use that as their magic key that you’re lying). 

-Make “I” statements. “I really just want to feel better, I really want to work with you, I will do anything, I just want to enjoy life. I feel this amount of pain here and it affects me by…”

-Patience. It’s rare to get it your first appointment. 

-Sometimes when you get these medicines or any that is hard to get, even if it gives bad side effects you’re scared to stop it because what if they nevre give it to you again and it does help a little. But in my experience if you’re open and honest and say (hey, this medicine made me feel like this and I mean I can try to deal with the side effects because of the help it gives me, but do you have any other medication like this that can maybe not give me those side effects (ex. vicodin –> oxy). 

-Just be honest and understanding. Sometimes it’s not the fact that you’re asking for the medicine. It’s the fact of the doctor being scared 1. Giving the med to the wrong person 2. You becoming addicted (which unfortunately they mostly care about that because it can sometimes come back to them). They have to realy trust you to put everything on the line, so sometimes it’s nothing personal. While for the others that it is personal fck em. 

-Show correlation. I got prescribed adderal during a hsopital stay and when i got out i got my doc on board by connecting everything. (”everyone just say oh you’re depressed so lets focu on fixing that. But they never consider why I’m depressed. Feeling fatigued 24/7…ya that’ll make anyone depressed. Not being able to pay attention and the racing thoughts, ya can make you depressed.”) so when he focused on adderal for attention I always wanted him to realize also need fatigue help. “Who can focus when they’re fatigued?” and that’s when BOOM it hit him. 

-Relating things to able bodied people. Like I said above, “It’ll make anyone depressed.” Docs obviously treat us differently and see us differently than able bodied. If you compare stuff to able bodied people’s experiences, or how they may feel it helps them remember “oh ya this isn’t normal, it’s not just because they’re depressed. Anyone would become depressed BECAUSE of this.” Also helps them think about how they’d feel. 

I always think of new stuff and remember tips when i’m actually in appointments so i’ll try to write them down for you guys.

@diagnosed-un

trigger  depressed  spoonie  able bodied  opioids  doctor  fatigue  chronic pain  chronically ill 

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Something to think about,

I wasn’t even born yet when the first known illegal activity from R. Kelly occurred. When the news surfaced of him and the child pornography, statutory rape, and abuse…I was 5 years old (the tape when I was 6). So i didn’t really know much until later. When I did hear more about it when I was a pre-teen/teen…it was said to me as a joke. I remember it a little bit, someone saying to me that they wanna trap me in a closet and pee on me…

(I wasn’t allowed to watch any of those late comedy shows I just saw the videos now)

When I was told about it, the fact of the underage crimes and abuse was foreshadowed with the jokes about the peeing. Until today (after research) I thought his victim was almost 18. Do you know why? I figured if these things were being taken so lightly, and R. Kelly still had lots of people that liked him…it must have been okay with an almost adult (which back then was taught to me as fine). I only knew of the pee victim, no one else. I didn’t know there was so many. It was always “r Kelly peed on someone” not “r Kelly is an evil child predator”

The fact that the victim was underage, (no matter the age) I remember thinking originally how horrible that is and he should be in jail and hated by all. Growing up I was taught by society that someone who commits underage sexual abuse and rape is okay and what they did was funny.

As being a victim of rape (my first time), how do you think I handled it? How did you think I even saw it for myself?

Because my mindset was influenced to change, it helped me think it was okay when a 19 year old and I dated when I was 12. I was told by adults “well…I mean….you guys shouldn’t really be dating” but nothing else was done. This directly was because of R Kelly.

When I was growing up it was the generation that had the mindset that “oh every girl says they’ve been raped” like a joke. Fortunately enough things are changing now, and there are still non-believers when someone comes out that they’ve been raped, but there are a lot of support and believers now. I don’t know if it’s where I grew up but in my day NO ONE believed you. Not even my doctors (I was never given a rape kit when I came forward). I had to leave the school.

I did not start to have the “it’s bad” mindset again until I was 19/20.

Anyways, I am 23 now and it’s shocking to me that people are starting to view these things are bad or finally being against people that support these awful people. Though, I am so greatful it’s happening for the generation after me.

The point of this post is to think of thinks and how they may impact people. As a child I was inadvertently taught that someone can rape minors and sexual abuse and they will still be loved and successful. That everything they did is funny, and that instead of unhappy reactions associated with them doing horrible things, you instead see smiles and laughing. Six months ago with my therapist my time at 15 finally hit me thanks to her help. For almost ten years because of the general treatment with rape and sexual assault, and with this specific thing I always told myself I was never really raped. And if I for a second I thought I was, I had to remind myself that it’s not a big deal and it’s whatever. So ten years of never dealing with what happened and my feelings finally caught up to me when I finally admitted, no I was raped and I can’t let societies views on rape and sexual assault change the fact that it did happen to me and that it is wrong.

So this is why when you say “it’s just a joke” ….it’s not for someone listening. This is why people putting their foot down of sexual abuse, assault, harassment helped me get closure. This is why we hold people accountable for their actions.

trigger  triggering  rape  sexual assault  trigger warning  sexual abuse  r kelly 

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csliceofficial

I’ve been diagnosed with fibromyalgia and there’s no cure for it. Does anyone have treatment suggestions that have worked for them or someone they know?

it-is-ok-i-am-ok

It’s really trial and error. Someone mentioned previously that lyrica is recommended a lot. I know it helps a lot of people. I’m assuming my reaction was extremely uncommon because most doctors think I’m lying 😂 I was wheel-chair bound. The usual medicine also is anti-depressants etc, me that’s a Nono because it makes my chronic fatigue worse. That’s why I do a med that’s less likely to cause fatigue (and also help some mental stuff), and that’s Wellbutrin. I really can’t use anything for every day preventative pain (again my fatigue is worse than my pain so if my fatigue is worse it’s a nono) and most preventatives have possible increased fatigue. So I usually just treat when pain because worse than normal. I use essential oils (I was very skeptical but after I put rosemary on my back once I didn’t need vicodinfor it anymore), I also use Vicodin for random extremely painful flare ups. Regular physical therapy doesn’t help me much but myofascial release and massage is 👍🏻 if you find a place that does “myofascial release” some insurances cover it. Sometimes for those real achey days I take 600mg ibuprofen. The rest of my meds are just management for other symptoms (migraine, pots, fatigue).

I always try to help newly diagnosed people with how they handle things. With being diagnosed real young, I learned a lot on how some doctors are and special ways to talk to them. (A lot of them just think we’re drug seeking so I learned ways to really show them I need help). I would also suggest if possible a therapist. Even if you don’t think you need it, finding someone to listen to us and our troubles with handeling the pain is sometimes hard. Support groups have helped me in the past. I keep up on all my medical stuff, correct when something’s wrong, keep track of my tests, tell a doctor when they’re acting wrong, and changing doctors when I’m not being treated how I should.

Loose clothing is my savor. I don’t wear normal bras I wear sports bras that basically just hang off of me. Big panties, baggy pants (anything touching me hurts), baggy shirt. It’s not always the greatest thing for appearances but you really gotta work on sooner or later realizing your comfort is more important than other people. Took me over 10 years and now I’m the happiest I’ve been. Keep your meds when you hang out the most. Find out if you like a massager that just vibrates or actually moves (shiatsu?) figure out simple self care if you have hard time, dry shampoo, deoterant by hang out place, tooth brush, tooth paste and cup of water by hang out, safe food and drinks by hang out.

Anymore help message me anytime

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heather franzen

it-is-ok-i-am-ok

I’m absolutely okay with how warm my soul feels right now

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insicknessinhealth

Crazy concept; the thing that makes chronic illness so difficult is the fact that we have to watch other healthy people live without pain and achieve their goals.

If being chronically ill was the norm we wouldn’t constantly beat ourselves up, compare ourselves to others, feel like we are missing out.

Suffering from chronic illness has to do a lot with…envy. Which is a tough pill to swallow.

it-is-ok-i-am-ok

“What do you mean you’d rather be working? You get to stay home and relax?”

“OooOOOoOh yeah I much prefer staying at home and getting paid in a month what you get paid in a week, I much prefer “relaxing” at home when I’m actually just trying to survive through the pain during that time. You’re right, not suffering, having independence, not being treated like the scum of the earth, etc etc…fuck that shit!”

It’s ok I didn’t want to get married anyways, to own more than you make in a month, be able to grocery shop, not be suicidal 24/7 etc. so overrated, you’re right.

How can it exactly be “relaxing” if we’re in excruciating mental and physical pain while doing so?

triggering  suicide  chronic pain  chronically ill  spoonie  disabled  ableism  trigger