Living with Ehlers-Danlos @chronically-kickass - Tumblr Blog

Arm rash after dislocation

So I’m an unemployed disabled person, who has ehlers danlos syndrome, lupus, and schizo-affective bipolar on top of other severe mental and chronic illnesses,

My food stamps have been cut, and I am in medical debt both to my therapist and to doctors and hospitals as I am in and out of there all the time with no way of paying the copay. I would also need help with transportation fare as due to my illness I cannot drive, and due to the fact I must see specialists, I’m usually going from buses to trains to buses to see my doctors.

If anyone could donate, It would be extremely appreciated

Paypal.me/thechronicchillpill

sunflower-cane

Help if you can, even 5 or 10 dollars helps so much

sunflower-cane

Help if you can- things are pretty bad rn

sunflower-cane

Help if you can please!

weaponizedhorse

Never in my life have I needed so desperately to make a post like is. There was a fuck up with our bank to where we thought we had money than we did, so we spent it on groceries and now that money has been taken out and rents been paid me and my mom will have -5 dollars to last us 2 weeks. I can’t pay our phone bill, I can’t pick up my psych meds, we will definitely need food before then, I can’t buy my boyfriend a birthday present. I am feeling extremely defeated at this point. I am begging for any kind of help. I sell pics and videos over at @weaponizedwhores but other than that all I can offer is my and my moms extreme gratitude and thanks. I feel like crying at this point. Me and my mom have been through some rough times but never this bad and I don’t know what to do. Just please help if you can and if you can’t a reblog is very much appreciated.

Cashapp: $sierrarose111

Venmo: Sierrarose111 the numbers you need are 0886

Paypal: [email protected]

nunyabizni

Help out if you can y'all

chronically-kickass

Please help if you can y'all or if not please reblog it would be great appreciated

#disability #ehlers danlos syndrome #ehlers danlos type 3 #ehlers danlos problems #ehlers danlos life #ehlers danlos zebra #ehlers danlos

black-in-kansas

chronically-kickass

5:22 They start talking about how in tiktok it is set up so that disabled tiktok users moderators are being forced to hard lock disabled users content, disbaled the reach their content, restricting them to under a certain number of views they can get. Usually in the range of a few hundred or a couple thousand. In order to “protect them from cyber bullying or abuse” which is a shallow excuse. He goes on to talk about the real reason and more things and I real suggest you guys watch this.

This is absolutley disgusting and if any of you have tiktok and wonder why your tiktoks don’t do super great this is why.

TW: Pedophilia talk starts at 7:20 but is another good reason as too why tiktok is not a good platform.

#signal boost #disabled #disability #ehlers danlos #ehlers-danlos syndrome #chronically ill #actually disabled #fibromyalgia #pots #postural orthostatic tachycardia syndrome

sunflower-cane

If anyone could PayPal an unemployed disabled woman money to help pay off medical bills, get copays for my therapist and buy food and meds that would be so helpful right now

PayPal.me/thechronicchillpill

weaponizedhorse

Me when I fall and I need my mom to pick me up off the floor

#disability #disabled #ehlers-danlos syndrome #meme

creek-cryptid-deluxe

This needs to be addressed:

I'm on reddit regularly. Today I saw something as I was scrolling that deeply disturbed me & I feel needs to be addressed.

For those not familiar with reddit's format, let me explain. The website is basically a host to multiple forum style 'subreddits' that are based around various interests where you can post photos, videos, gifs, links to websites, links to articles, or just good old fashioned text.

Some subreddits are very broad (r/aww is pictures, videos, & gifs that are adorable & make you say "awww") & some are extremely niche (r/picturesofiansleeping was created by a dude where he just posted random pictures of his roommate, Ian, sleeping because the dude could fall asleep anywhere). Each subreddit is it's own community with its own culture & rules, while also being a part of the reddit community as a whole & abiding by its overall culture & rules.

Below is a screenshot (with the username redacted) from a post in the Ehlers-Danlos subreddit, which I scroll through from time to time just to see what's there, but not regularly because the overarching culture there is not one I want to be a part of (& what I'm about to show you here is a perfect example of why).

So a photo of Joaquin Phoenix filming a scene for the movie Joker is making the rounds with the caption above it, stating that he dislocated his knee filming that scene (not written is that he continued to film after the dislocation) & demanding he be given the golden globe. Given the quality of that performance, even prior to knowing about his knee, I agree that he should have a golden globe for it.

What I take issue with is the fact that that was posted to r/ehlersdanlos with the title "My knee dislocates 5-20 times a day. Where's my reward?"

So let's chat about why this is ABSOLUTELY unacceptable, despite the fact that I see similar sentiments throughout the chronic illness communities.

First of all, this person is 100% exaggerating. I'm not one to doubt anyone's claims regarding their health but as someone who has had knee dislocations since I was quite small, it's not feasible. Subluxed knee 5-20 times a day? Eh, still not really believable. 5-10 subluxations? Sure, maybe. But no way is this person having 5-20 full knee dislocations in a 24 hr period.

Exaggerating like this actually really hurts credibility & not just for them as an individual. I'd be will to bet that if they are stretching the truth that casually in an inconsequential post online, that they do it in real life to medical staff as well. If the medical professionals that we all rely on for care hear enough exaggerations from specific demographic groups (say... women under 25 with an EDS diagnosis), then eventually when they see a patient that fits that criteria, there will be an unconscious bias & assumption of exaggeration. Then it hurts the chronically ill community as a whole.

Second, this person is minimizing & invalidating Mr. Phoenix's (i spelled his first name once & was quote proud, but it is not happening again) injury simply because... why? Because he is able bodied? Because the poster is chronically ill? Those things don't cancel each other out. This is the bit I see FAR too often.

There is this weird line of thinking that is prevalent in the chronic illness community where some chronically ill people think that because other people aren't chronically ill, any illness, pain, or injury they go through isn't as valid as their's is. Lemme just hop up on my soapbox here to say...

📢 THAT LINE OF THINKING IS FUCKING BULLSHIT📢

I've seen it first hand via my aunt. She is diagnosed with fibromyalgia. She has all the hallmarks of EDS, but despite me getting diagnosed & telling her she needs testing, she is weirdly attached to her current diagnosis. Any time my cousin (who is 3 yrs younger than me) is sick or hurting, my aunt says something about how much worse she feels. Cousin says she has a headache? Aunt: "Now you know what I deal with 24/7." Cousin has a stomach virus & can't stop puking? Aunt: "That's literally my life 4 out of 7 days of the week."

When The Spawn was in middle school, right after I had started to trend downward health wise, I noticed her wincing & holding her head a lot. I asked what was up & she said she had a headache & it had been hanging around for 3 days now. I asked why she didn't tell me sooner so I could help & she told me that she knew it was minor compared to what I deal with, so she didn't feel right bringing it up.

I immediately sat her down & had a long talk explaining that just because I am dealing with the dumpster fire I was given does not at any time mean that whatever she is going through isn't every bit as important, painful, or difficult for her & that at no time do i want her to have to handle it alone. I made sure she knew that no matter what was going on with me, I am here for her because what she is going through is important & valid. I've only had to have that talk 2 more times with her.

I've had to have a version of this talk with a few friends & my dad, as well. I'll see my dad wince or hear him do what I call "The Dad Huff" & I'll ask what's up. Dad: "I know I shouldn't complain to you because it's nothing compared to what you deal with but..." BRO i am EXACTLY who you should complain to. I know tricks that could help with a myriad of physical ailments PLUS i have a whole ass Walgreens in my bathroom.

My point is that as a whole, chronically ill people need to stop invalidating healthy, able bodied people's illnesses or injuries. PERIOD. It's not a fucking suffering competition. What? You think if you keep invalidating healthy people & boasting about how much more sick or more injured you are that at some point a guy is going to leap out of the bushes & hand you a gold medal & a giant check for suffering the most?

No.

Also, you'd think if someone was suffering that much, in that much pain, was that ill, that they wouldn't want anyone else to feel even close to the way they do & would be happy to help or be genuinely distressed/concerned for the other person's wellbeing.

So fuck off because people who do this shit just sound like they lack empathy, compassion, and other generally human qualities which implies they have no fucking soul.

Just be supportive of one another, able bodied, disabled, chronically ill, chronically healthy, or whatever. Just be kind to people. Fuck.

chronically-kickass

Things like this have been bothering me for a while. extremely well said

sunnybugz

I don’t think healthy people fully understand the consequences that physical activity can have for those of us with chronic pain/chronic fatigue.

On Friday afternoon, I played badminton in my gym class. A low energy sport, that couldn’t hurt, right? Wrong. It is currently Sunday and I have spent my entire weekend either in bed or on my couch. I have been in pain for two days now.

45 minutes of badminton caused my hand to shake uncontrollably for nearly 24 hours. My arm is still swollen, and my hips and ankles hurt so much that walking down the stairs takes 2 or 3 times longer than usual. Not to mention what the fatigue has done, especially to my memory.

45 minutes of a low intensity sport for you might leave you a little sweaty for a bit, maybe your muscles will be a little sore in the morning. For me, and many others with chronic illness, it is debilitating. Please try to understand where we are coming from when we say we are “recharging”.

chronically-kickass

Hey idk if you are able but you should really look into getting a doctors note for your P.E. class. You dont deserve to be in pain all weekend for a class your post was tagged EDS so whoever diagnosed you should be able to help

jenniferrpovey

I’m mad with Niantic.

No, actually I’m not.

I’m mad with the entire smartphone industry.

See, here’s the thing. I’m a relatively small cis woman. My palm width is 3", just over the female average of 2.91". My hand length is about 6.5", just UNDER the female average of 6.77". So I have fairly typical female hands.

The average width of the male hand is 3.30 inches and the average length is 7.44. So a typical cis man has a hand almost an inch longer than mine.

I have the smallest phone I could get with my carrier in the sub $200 range. It is 5.7" long.

Which means that it is a bit less than an inch shorter than the length of my hand (which is measured from the tip of the middle finger to the point where the hand and wrist meet).

My phone is also just under 3" wide.

That’s when NOT in its case.

It weighs 5.29oz.

This phone is both the smallest phone I could get AND the largest I could realistically use. Not comfortably use…it’s not comfortable.

The size of phones is increasing. I am trying to work out how I am going to use a 6" long phone, which will probably be the smallest available size next time I need a phone.

There ARE smaller phones. They are in the $500-1,000 price range. That’s out of reach for a lot of people.

And.

Who is going to give their child a $500 smartphone?

So, the anger is not just “My phone doesn’t have a gyroscope.”

It’s the fact that a man could buy a $100 phone with a gyroscope, but if I do that I won’t be able to use it with one hand.

Let alone wave it around like it’s a wand. (I tried that with my current phone and got a sore wrist).

Should Niantic be aware of this and create an accessible alternative mechanic? Absolutely.

But there’s a wider problem, and that is the smartphone industry caters ONLY to adult males. We need to fix this before it gets any worse…but I don’t know quite how to put pressure on the manufacturers. I can’t just say “I’ll only buy a phone I can comfortably use in one hand” if they don’t exist in my budget because the industry is convinced we all want larger screens (That’s what my tablet is for, people).

paperwizards

I say that if smartphone manufacturers are going to keep making the things bigger, the pockets on women’s pants need to get bigger as well.

jenniferrpovey

The thing is, it’s not just the pockets.

They’re getting too big for women and teenagers to use as well. Pockets are a major issue for all kinds of levels, including the fact that carrying a purse can physically endanger a woman in certain circumstances.

But I want to be able to use my phone comfortably with good ergonomics. And I can’t even now. If I have to “upgrade” to a six inch phone…

paperwizards

The ever-growing smartphone is yet another example of how men of a certain age are treated as the default customer by companies and manufacturers.

chronically-kickass

This post kind of really irritates me because I am a 5"4 female with extremely small hands, I have met two people in my entire life with hands smaller than mine, and I have what is a normal size phone for today so its pretty big and I have a connective tissue disorder so my joints get hurt easily especially wrists and fingers , now I havent gotten to play wizards unite yet but I have played pokemon go a lot and I have faired just fine, even when out walking with cane so I really only have one hand. Although I dont know what’s stopping you from using both hands. There are 100% accessibility issues apps like these need to take into account for disabled people but having small hands is not one of them

Like the entire smart phone industry is not against you wtf just git gud

Also one thing that would def 100% help you out and fix your problem is getting one of those things you put on the back of your phone so you can use it to have better leverage just put it down a lot lower than you see people normally putting them so you can like throw the pokeball or wave the wand or whatever

rosesandthorns44

Get a LoveHandle for your phone. It’s an elastic strap that adheres to the back of your phone. I like it better than a PopSocket because you don’t have to grip, the elastic grips for you. I have flimsy wrists and fingers from my EDS.

justummsomeguy

@chronically-kickass just because it doesn’t bother you doesn’t mean it isn’t an issue for other people. Do you even know for sure that your phone wouldn’t feel more comfortable if it’s smaller? I’ve been diagnosed with EDS, too, that doesn’t give you a right to dismiss other people’s perspectives.

It is an issue that our world has been designed primary around/for middle-aged white men. Hell, look at medical research studies, most medications are created/tested for men, not women.

This may seem like not a big deal compared to something that big, but when you keep in mind how often most people use their phones, that’s a lot of time. And just because it’s might not always outright painful to use a phone that’s too big for you, doesn’t mean that it should be ok that it’s uncomfortable. Even if it’s not super noticable, it could easily be putting more strain on your joints because of its size, even with accessories that can help. Besides, we shouldn’t have to buy extra accessories just to be able to comfortably use our phones, when half of the population have pretty much all phones designed with them in mind.

Tech can be huge about ergonomics, ease of use, etc. but when their mode of doing that leaves out a large part of the population they’re doing something wrong.

chronically-kickass

I know there are issues with medical studies being mostly focused on men, for example autism and ADHD the diagnostic criteria are basically just for dudes but when your problem can be solved with a dollar and 50 cent piece of plastic, it’s a ridiculous thing to complain about. I’m sure it would be more comfortable with a smaller phone but everyone wants big screens not just men that’s why they are the way they are

When there are much bigger issues with the world this just screams first world problems. Especially when it is really easily fixed without implying the phone companies are discriminating against you.

And I mean obviously she didnt work that hard to find a smaller phone I just googled “small smartphone” and i found this one that is $93

The iPhone 8 is 4.7 inches

There’s tons of phones that are under 5 inches. If I can easily use a phone with one hand and a disability like what’s stopping her, and what’s stopping her from using two hands? It’s just dumb to complain about this when first it’s not even an issue if you look into it, you can easily find a small phone for cheap, and then to insinuate its discrimination is just ridiculous.

jenniferrpovey

1. “Everyone” wants big screens when multiple people on this very post have said they don’t.

2. You can’t just buy any phone with most services, you have to get one from their list. I can’t use an unlocked android with mine

3. It’s $1.50 more than an able-bodied man with larger hands has to pay. It’s the principle of the thing. It is discrimination regardless of the amount. (I specify with larger hands because some men have the same issue).

4. The small smartphones don’t have a gyroscope, which is what I was wishing I had in the first place.

5. I can’t comfortably use a 5.5 inch phone, the smallest I could get, with two hands. Not with good ergonomics. Bad ergonomics are bad for you in the long term.

Why are you so determined to attack people for wanting something that is not being well provided? The point of the complaint is to publicize the problem so smartphone manufacturers can see that it is not true that everyone wants big screens.

Oh, and btw?

I’m autistic. Don’t use autism as ammunition against me.

chronically-kickass

When the fuck did I use autism against you? I said that there is an issue with the medical community focusing solely on men. Especially when it comes to disabilities and autism. The diagnostic criteria is catered to them. That's the truth not using it against you.

1. Everyone as in most people. I'll be more clear from here on. Just like when people say "You" and they mean the general you not "You" personally.

2. What service do you have then? tell me give me 15 min and google and I can find you a phone.

3. It's literally a dollar and 50 cents. So when you say "only to adult males" you didnt mean literally every adult male right? Like how I said everybody but didnt mean literally every person.

4. Yes they do

Google is your friend.

5. What does that mean you hold the phone with two hands for like 30 seconds while doing the little zigzag thing from Harry Potter and you can go back to one hand, or like I said it's a $1.50

It's not "attacking" I'm disagreeing. Because this is such a first world problem and if you can use your 1a rights to complain about something like this I have the right to point out that 1. I dont agree and 2. The things you are wrong about. Especially because this is a "problem" that is already solved. You just didnt look hard enough.

#long post

sunflower-cane

parents not believing their disabled child is actually disabled and forcing them to go beyond their limits is abuse.

parents calling their disabled kid a burden or a problem to them is abuse

parents using the disabled kids story to their advantage and making it more about themselves is abuse.

stop excusing abuse just because the victim is disabled.

should-be-sleeping

If you’re asked to do a thing and you say, “Sorry, I can’t do that. I’m disabled.”

Then they ask, “Oh? What’s wrong with you?”

It is perfectly acceptable to reply, “I just told you what’s wrong with me. I’m disabled.”

It’s none of their business what precisely makes you disabled. The only information you should share is any accommodations you may require, for your own sake.

ithelpstodream

As of Friday, Alaskan businesses will no longer be allowed to pay disabled workers less than the minimum wage, which is currently $9.84 an hour.

“Workers who experience disabilities are valued members of Alaska’s workforce,” said the state’s Department of Labor and Workforce Development Acting Commissioner Greg Cashen, in a press release. “They deserve minimum wage protections as much as any other Alaskan worker.”

https://thinkprogress.org/alaska-minimum-wage-diability-b762e00ab279/

chronically-kickass

ALL 50 STATES! ALL 50 STATES!

nonbinarypastels

disabled adults who are still living at home with their parents because they’re unable to live on their own—whether it’s temporary or permanent, whether they’re working or not working—don’t deserve to be looked down on or made to feel like they’re not doing enough or aren’t good enough. what they deserve is support, love, understanding, and respect. 💜💛

So when I got on my LIFT today I asked for air conditioning and he started to go "uhhh" but I said "if it doesnt bother anyone" so I asked the lady infron of me and she was all " WELL, I'm cold" so I was like okay forget about it then we dropped her off so I was like

"Can I please get air conditioning now" and this fucking prick went

"Uh I don't think so, it's October that's a strange request"

And I was like " I have health issues and have issues regulating my body temperature" I'm literally sweating and he is wearing a jacket. What the fuck. I have NEVER had a LIFT driver refuse me air conditioning. I am reporting this dude the second I get off this bus.

I legit had to take off my shirt and I am sitting her in my tank top cause I'm so hot rn

#btw so everyone knows #LIFT is different from lyft #ehlers danlos #ehlers danlos syndrome