Comments
Sep18

irocklobster said: Ive got some chronic problems too but eds sounds scary as shit man. Like, I’ve got blisters growing on my organs and I projectile vomit blood but like…. idk being afraid of knocking your bones and shit out of wack… aren’t you guys afraid to move?

See but what you go through sounds absolutely terrifying to me! I guess once you’re used to dealing with something it just gets less shockingly scary. There’s actually this thing with EDS I’ve read about where people get “kinesiophobia” which is sometimes a complete phobia of moving, and sometimes just the seemingly logical thought that “well if I don’t move they can’t dislocate, right?” But then apparently not moving doesn’t actually help at all because sometimes I can run up a few stairs and be fine, and sometimes I’m in my wheelchair and I turn too hard and sublux. It’s just unpredictable. 

irocklobster

Comments
Sep18

Rant #1: Literature to Practice Inconsistency in Medicine

you know what really gets me? you read all these pubmed studies from doctors, doctors you’re going to see, and there are always lines about EDS patients like

  • "it should not be underestimated how hypermobile these patients are,"
  • "extra care should always be taken in surgery or invasive procedures because of various fragilities," 
  • "high risk of complications in procedures or dangerous side effects to medications that are more common in these patients should be taken into consideration." 


And then you go see these doctors WHO WROTE THAT LITERATURE, and they’re like

  • "Are you sure you’re having dislocations? Maybe it’s just regular joint pain?”
  • "oh you’ll be fine we don’t need to worry with this procedure” 
  • "Nah, side effects with this are rare, I’m sure you’ll be fine.” *proceeds to think you’re making it up when you complain about side effects*


Like these people are supposed to be at least reasonably intelligent, do they really not see a problem with this?!

like Dr. H is the one who does the literature on 'patients may need future fusion surgeries down the road' 'things can progress quickly in this degenerative illness' but then in practice he's like 'meh i'm sure that first surgery fixed it all' 'nah it couldn't degenerate THAT fast' UGH someday if i get some respectable degree i will try very hard to point this out to the community

Comments
Sep18

14 hours to go! sorry not sorry for all the pumpkin online posts

Comments
Sep15

PUMPKIN ONLINE IS FUNDED!!!

helloelloh:

image

LETS GET THE STRETCH GOAL!!!

image

Stretch Goal: Spoonie Island will have its own special quest line for Chronic Illness Awareness!!

Come on friends, only 5k to go to bring awareness to a whole new (playable) level!!

(via chronicillnessmemes)

Comments
Sep15

chronicillnessproblems:

pumpkinonline:

VERY IMPORTANT ANNOUNCEMENT!!
We have a backer who gave to the $3000.00 tier. And while that is exciting and great for us, this is really important what she wants to do with her reward. She wishes to remain annoymous but this is what she wanted to say.

One in ten Americans has a disability. And yet one of the hardest things to deal with, being disabled or ill, is isolation. The people in your day to day life suddenly don’t understand, or maybe you can’t leave the house, to reach those that would. So you turn to the internet, and social media, where you can talk to people dealing with similar issues, and find a place for yourself.

Even in support groups, sometimes, it can be hard, because the only thing you have in common, the only thing you talk about, is illness.

I had an idea. I wanted to create a haven, a place where everyone could go, sick or not, able or not, and exist together. A place where people can gravitate together, and share similar interests, with no pressure. With no judgement, not a place just for us, but a place that we could be, and relax, together, and also with others. I saw Pumpkin Onlines Kickstarter, and I wanted to play the game immediately. The more I thought about it, the more I realized – maybe we could join forces, and bring my dream into Pumpkin Online, a perfect platform for us all to play and be together.

Thanks!”

—-

Wait but that’s not all she also said this.

You have no idea how much this means to us. Personally I have Chronic Fatigue Syndrome and Fibromyalgia. I am on the severe end of things and I am on bedrest 23 hours a day. It is hard for me to sit up for any length of time most days. So all of my social interaction is done on line. Most of the people I know aren’t in such an extreme place, but many are not far behind.”

Her village seed reward allows the backer to create their own village, with 4 NPC families with shops. As well as be a producer with an active role in the game development. 

Her idea is to create an island in the game inspired by the Spoon Theory

The spoon theory was created by Christine Miserandino which explains to able-bodied people what it’s like to live with a chronic sickness of disability. You have to read the article in the link to understand.




SO GUYS if you read all that. We need to make this happen. Like we need to make this backer’s idea come alive because her tier makes her apart of our team now. If we can make our goal she can create this place in our game. The team is already discussing ideas and concepts for this place in our game map that will created by her. And will also bring awareness in our game for chronic illness. 


So ONCE AGAIN. We have 2 weeks left in our Kickstarter. If you want this happen any kind of amount would help push us further. We’re so close. We can do this. The teams is ready and willing to start working and go forward. 

image

Pumpkin-Online is a Harvest-Moon / Animal Crossing inspired mmo currently in development by indie game company, Pumpkin Interactive, we need a lot of support to make this happen so please follow, and spread the word about us
PLEASE SUPPORT OUR KICKSTARTER! IT ENDS SEPTEMBER 18th.



Hey have you guys heard about this? They have over $18,000 of the $30,000 goal, and 9 whole days left to fundraise. Please share this with anyone and everyone, if a lot of us spoonies on tumblr could donate just a tiny bit, I bet we could get them there in nine days, and then we can have our own spoonie island!! 

GUYS THEY’RE SO CLOSE LOOK!!

(via chronicillnessproblems)

Comments
Sep13

chronicillnessproblems:

pumpkinonline:

VERY IMPORTANT ANNOUNCEMENT!!
We have a backer who gave to the $3000.00 tier. And while that is exciting and great for us, this is really important what she wants to do with her reward. She wishes to remain annoymous but this is what she wanted to say.

One in ten Americans has a disability. And yet one of the hardest things to deal with, being disabled or ill, is isolation. The people in your day to day life suddenly don’t understand, or maybe you can’t leave the house, to reach those that would. So you turn to the internet, and social media, where you can talk to people dealing with similar issues, and find a place for yourself.

Even in support groups, sometimes, it can be hard, because the only thing you have in common, the only thing you talk about, is illness.

I had an idea. I wanted to create a haven, a place where everyone could go, sick or not, able or not, and exist together. A place where people can gravitate together, and share similar interests, with no pressure. With no judgement, not a place just for us, but a place that we could be, and relax, together, and also with others. I saw Pumpkin Onlines Kickstarter, and I wanted to play the game immediately. The more I thought about it, the more I realized – maybe we could join forces, and bring my dream into Pumpkin Online, a perfect platform for us all to play and be together.

Thanks!”

—-

Wait but that’s not all she also said this.

You have no idea how much this means to us. Personally I have Chronic Fatigue Syndrome and Fibromyalgia. I am on the severe end of things and I am on bedrest 23 hours a day. It is hard for me to sit up for any length of time most days. So all of my social interaction is done on line. Most of the people I know aren’t in such an extreme place, but many are not far behind.”

Her village seed reward allows the backer to create their own village, with 4 NPC families with shops. As well as be a producer with an active role in the game development. 

Her idea is to create an island in the game inspired by the Spoon Theory

The spoon theory was created by Christine Miserandino which explains to able-bodied people what it’s like to live with a chronic sickness of disability. You have to read the article in the link to understand.




SO GUYS if you read all that. We need to make this happen. Like we need to make this backer’s idea come alive because her tier makes her apart of our team now. If we can make our goal she can create this place in our game. The team is already discussing ideas and concepts for this place in our game map that will created by her. And will also bring awareness in our game for chronic illness. 


So ONCE AGAIN. We have 2 weeks left in our Kickstarter. If you want this happen any kind of amount would help push us further. We’re so close. We can do this. The teams is ready and willing to start working and go forward. 

image

Pumpkin-Online is a Harvest-Moon / Animal Crossing inspired mmo currently in development by indie game company, Pumpkin Interactive, we need a lot of support to make this happen so please follow, and spread the word about us
PLEASE SUPPORT OUR KICKSTARTER! IT ENDS SEPTEMBER 18th.



Hey have you guys heard about this? They have over $18,000 of the $30,000 goal, and 9 whole days left to fundraise. Please share this with anyone and everyone, if a lot of us spoonies on tumblr could donate just a tiny bit, I bet we could get them there in nine days, and then we can have our own spoonie island!! 

Comments
Sep13

chronic illness articles

Comments
Sep8

pumpkinonline:

VERY IMPORTANT ANNOUNCEMENT!!
We have a backer who gave to the $3000.00 tier. And while that is exciting and great for us, this is really important what she wants to do with her reward. She wishes to remain annoymous but this is what she wanted to say.

One in ten Americans has a disability. And yet one of the hardest things to deal with, being disabled or ill, is isolation. The people in your day to day life suddenly don’t understand, or maybe you can’t leave the house, to reach those that would. So you turn to the internet, and social media, where you can talk to people dealing with similar issues, and find a place for yourself.

Even in support groups, sometimes, it can be hard, because the only thing you have in common, the only thing you talk about, is illness.

I had an idea. I wanted to create a haven, a place where everyone could go, sick or not, able or not, and exist together. A place where people can gravitate together, and share similar interests, with no pressure. With no judgement, not a place just for us, but a place that we could be, and relax, together, and also with others. I saw Pumpkin Onlines Kickstarter, and I wanted to play the game immediately. The more I thought about it, the more I realized – maybe we could join forces, and bring my dream into Pumpkin Online, a perfect platform for us all to play and be together.

Thanks!”

—-

Wait but that’s not all she also said this.

You have no idea how much this means to us. Personally I have Chronic Fatigue Syndrome and Fibromyalgia. I am on the severe end of things and I am on bedrest 23 hours a day. It is hard for me to sit up for any length of time most days. So all of my social interaction is done on line. Most of the people I know aren’t in such an extreme place, but many are not far behind.”

Her village seed reward allows the backer to create their own village, with 4 NPC families with shops. As well as be a producer with an active role in the game development. 

Her idea is to create an island in the game inspired by the Spoon Theory

The spoon theory was created by Christine Miserandino which explains to able-bodied people what it’s like to live with a chronic sickness of disability. You have to read the article in the link to understand.




SO GUYS if you read all that. We need to make this happen. Like we need to make this backer’s idea come alive because her tier makes her apart of our team now. If we can make our goal she can create this place in our game. The team is already discussing ideas and concepts for this place in our game map that will created by her. And will also bring awareness in our game for chronic illness. 


So ONCE AGAIN. We have 2 weeks left in our Kickstarter. If you want this happen any kind of amount would help push us further. We’re so close. We can do this. The teams is ready and willing to start working and go forward. 

image

Pumpkin-Online is a Harvest-Moon / Animal Crossing inspired mmo currently in development by indie game company, Pumpkin Interactive, we need a lot of support to make this happen so please follow, and spread the word about us
PLEASE SUPPORT OUR KICKSTARTER! IT ENDS SEPTEMBER 18th.



Hey have you guys heard about this? They have over $18,000 of the $30,000 goal, and 9 whole days left to fundraise. Please share this with anyone and everyone, if a lot of us spoonies on tumblr could donate just a tiny bit, I bet we could get them there in nine days, and then we can have our own spoonie island!! 

i keep seeing this and wishing i could do more than donate like $5 then i remember that i have a blog that gets a lot of view s so EVERYONE SHARE LETS MAKE THIS HAPPEN

Comments
Sep7

theshriekingsisterhood:

Things I’d like to see more of in media

characters wearing medical alert bracelets

characters taking medication with their meals

characters mentioning that they have a therapy appointment

characters with reminders to eat in their phones/calendars/planners

characters using stim toys

characters asking if an event is accessible

characters using noise cancelling headphones

characters who are disabled all the time, not just when the plot “calls for it”

characters who are disabled all the time, not just when the plot “calls for it”

(via chronicillnessmemes)

YES TO ALL

Comments
Sep1

i-need-that-seat:

iapollogise:

I love pirates because they have no concept on albeism. oh you have no leg? here have a peg leg. no hand?? well guess we gotta put a hook on that, give those sons of bitches a surprise. Blind in one eye, put an eyepatch on no one fucking cares, youre deaf??? go man the canons you glorious bastard.They dont care if youre disabled bcus as long as you can fuck shit up they literally dont fucking care.

I never thought about it this way. This is beautiful.

(via hermionesharrypotteressays)

Comments
Aug30
talledschick:

#ALS #icebucketchallenge #chronicillness #invisibleillness #eds #crps #raynauds #lupus #CFS #FMS #fibromyalgia #fundraising #awarness #illness #challenge #learnmore #ehlersdanlossyndrome #thinktwice

For example This Video in which a woman with dysautonomia does the ice bucket challenge, bravely, to show us what temperature change like that can do to someone with POTS. (Postural Orthostatic Tachycardia Syndrome.) In the video, the ice causes her to pass out, and have a seizure, which is pretty frightening to watch, and which her husband says happens 6-7 times per day normally. Her video very clearly raises the awareness for both ALS and POTS! (Not that I in any way advocate for the rest of us who have problems with ice buckets to cause themselves to suffer for awareness, but Ruth’s video is definitely worth watching and sharing.)

talledschick:

#ALS #icebucketchallenge #chronicillness #invisibleillness #eds #crps #raynauds #lupus #CFS #FMS #fibromyalgia #fundraising #awarness #illness #challenge #learnmore #ehlersdanlossyndrome #thinktwice

For example This Video in which a woman with dysautonomia does the ice bucket challenge, bravely, to show us what temperature change like that can do to someone with POTS. (Postural Orthostatic Tachycardia Syndrome.) In the video, the ice causes her to pass out, and have a seizure, which is pretty frightening to watch, and which her husband says happens 6-7 times per day normally. 
Her video very clearly raises the awareness for both ALS and POTS! 
(Not that I in any way advocate for the rest of us who have problems with ice buckets to cause themselves to suffer for awareness, but Ruth’s video is definitely worth watching and sharing.)

(via eenymeenypia)

Comments
Aug29

vaporware-femme:

stimmyabby:

people complain about people “faking disabilities”
you know what happens way more often than people faking disabilities?
people pretending not to be disabled so they won’t get treated like shit

so they won’t lose their jobs

their relationships

so they won’t be abused or beaten

so they won’t be denied access or care

so they won’t be killed.

or they have internalised what society has told them for so long. what their peers have told them. what their loved ones have told them. i am not sick enough to warrant help. it’s not worth it. i don’t need help. if i need help, i am weak, and there is something wrong with me on the inside that makes me bad. that makes me less.

or they have tried to get help, and it’s failed. the people around them have been untrustworthy, the medical community has been untrustworthy, they don’t have insurance or the money to get proper care or continuing care, they need the job they have because they have to support their family. a lot of disabled people are poor. are homeless.

i don’t know a single human being who wishes that they had a crippling disability. but i know a whole lot of people who fear for their very lives to speak out about what’s disabling them.

(via paradife-loft)

Comments
Aug26

People with power wheelchairs- how do you deal with getting through rain? I just moved to Tucson and it’s the end of monsoon season, which means there was a big flash flood and the roads get totally filled with running water a foot+ deep for at least an hour or so, and if you need to cross streets in your wheelchair to get to your car, what do you do? Is it safe to go through that much water with a power chair? Today was okay because I managed to get to a garage that my dad could pick me up in, but he’s leaving tomorrow, so I don’t have any idea how to handle that situation on my own. Ideas?

disability monsoon season wheelchairs power wheelchair

Comments
Aug26

I think Tucson seems to have a high disability population, which is kind of awesome (compared to living in a place with a low percentage of people with visible disabilities, anyway.) So far in 3ish days I’ve seen 1 other person in a power wheelchair, 8 different people in manual wheelchairs (6 of them my age-ish,) 1 girl with a cane, 2 people with service dogs, and 2 people in scooters (both young people.) 

it's great because then it's not an out of place thing and no one stares at you in public or asks you your whole life story when you're just trying to check out at the store repost from my other blog

Comments
Aug22

nvllify:

Please please please stop saying things like “If I had a physical illness instead of a mental one you’d take me seriously!” or literally anything to that effect. 

This is a really common misconception but I have no idea where it comes from as the reaction pretty much all chronic illnesses get, mental or physical, tend to be roughly the same. Some illnesses have more stigma  or are treated with more ableism than others, yes, but as general categories the way they’re treated are the same.

I’ve gotten the exact same comments about both my mental and physical health, including

  • Aren’t you too young to have that?
  • Are you sure those meds wont turn you into a zombie?
  • Did you try yoga?
  • Have you tried sleeping better?
  • Try this diet it’ll totally make you better! 
  • I’m pretty sure thats not a real thing
  • You’re just using that as an excuse
  • no, you’re just lazy/[insert ableist slurs here]. 

Additionally, I’ve been physically sick literally over 5 years and do not have any diagnosis, which is not uncommon. Being physically ill is not some magical difference from being mentally ill where doctors suddenly aren’t ableist towards you, know exactly how to diagnose you, and do so immediately.

Its also not a magical land where people take you seriously, ever. Believe me. I can’t even count the number of times I’ve been told I’m too young to be chronically ill, and I’ve been chronically ill since I was 13 so its like, clearly it can happen a lot younger than 18. and yet I get those comments constantly anyways. 

if you’re mentally ill but otherwise abled PLEASE don’t make these kinds of statements anymore because its just not true. They WOULD and they DO act the exact same ways to ppl who are physically ill. unless you’ve had experience being treated as both physically and mentally ill please stop comparing the two as if you have any idea what its like. you clearly don’t because no, it wouldn’t be different if you were physically ill. it wouldn’t be different at all. 

#ableism #medication 

(Source: n-ll, via paradife-loft)

not to shame anyone with mental illnesses who have said this but having a physical illness isn't really magically better to society mental illness is still getting over the 'shouldn't you be institutionalized' stigma but physical illnesses never seem to get past the 'you're not really sick/it's just diet/you're useless to society' society is just ableist in general i think i'll have more trouble getting jobs because i show up in a wheelchair than because i have anxiety on record or making friends at parties because people don't think disabled people are real people

Comments