PhD in Crohn's

I have no actual blood left, it's just caffiene and Remicade.

[ladyshinga]

“lol the only people mad about the tumblr announcement just want porn lol”

Yeah, no.

Tumblr blocked the tag “chronic pain” in this mess for no reason

They’re flagging commonly used tags by queer people, sex educators, and artists who make their fucking LIVING on tumblr

They’re gonna take down genuine sex workers because they didn’t curb the problem with spamming porn bots YEARS ago when tumblr users REPORTED OVER AND OVER AND OVER AND *OVER* that it was a problem

Tumblr IGNORED the bots, IGNORED the problems, and honestly treated it like NOTHING until their app was taken off a store due to it.

They’re fucking over a shit-ton of REAL PEOPLE who rely on tumblr for community and/or income because they ignored users’ complaints about shitty porn bots for YEARS until it had financial consequences

I can no longer even talk about chronic pain without the post being blocked from searches

I have drawn one or two nude pieces on my art tumblr which is 99% safe for work but now I’m worried the blog will be taken down entirely because Tumblr won’t bother differentiating between spam and REAL PEOPLE just trying to live their goddamn lives

And god forbid I want to talk about bisexuality or sex or kink in just… MY LIFE. As a normal-ass human being who just wants to TALK ABOUT HUMAN THINGS

No, their solution to nuke a problem they’ve ignored for years is to take us all down at once

So maybe don’t laugh about “oh no not my pornz” because 1. plenty of that ~porn~ is made by actual humans making their living and 2. WAY MORE than “just porn” is being targeted

This along with Facebook continuously upholding white supremacy by letting nazi shit fly by while they ban people for speaking out against their oppressors and it’s basically like we’re running out of truly free places to just… BE

[phdincrohns]

wow ok so i just searched chronic pain on mobile to test this out and its true, there’s just nothing in the tag

sooo i guess i’ll be considering moving platforms? thoughts?

[undercover-crohnie]

I’m seeing a lot of alternatives (aside from “standard” social medias, Twitter etc) floating around but I haven’t had a chance to check them out yet.

[phdincrohns]

I already use Dreamwidth for personal stuff, so I'm considering just moving my public disability blogging there and hope that things pick up? The communities feature would be amazing to rebuild the spoonie network, and I'm willing to set it up since I am old and well-versed in the platform, but I would need help to moderate and maintain it. Discord is a great option, though the one spoonie serve I'm currently on is unfortunately pretty quiet. Everyone, please feel free to contact me directly regarding either of these options.

[ladyshinga]

“lol the only people mad about the tumblr announcement just want porn lol”

Yeah, no.

Tumblr blocked the tag “chronic pain” in this mess for no reason

They’re flagging commonly used tags by queer people, sex educators, and artists who make their fucking LIVING on tumblr

They’re gonna take down genuine sex workers because they didn’t curb the problem with spamming porn bots YEARS ago when tumblr users REPORTED OVER AND OVER AND OVER AND *OVER* that it was a problem

Tumblr IGNORED the bots, IGNORED the problems, and honestly treated it like NOTHING until their app was taken off a store due to it.

They’re fucking over a shit-ton of REAL PEOPLE who rely on tumblr for community and/or income because they ignored users’ complaints about shitty porn bots for YEARS until it had financial consequences

I can no longer even talk about chronic pain without the post being blocked from searches

I have drawn one or two nude pieces on my art tumblr which is 99% safe for work but now I’m worried the blog will be taken down entirely because Tumblr won’t bother differentiating between spam and REAL PEOPLE just trying to live their goddamn lives

And god forbid I want to talk about bisexuality or sex or kink in just… MY LIFE. As a normal-ass human being who just wants to TALK ABOUT HUMAN THINGS

No, their solution to nuke a problem they’ve ignored for years is to take us all down at once

So maybe don’t laugh about “oh no not my pornz” because 1. plenty of that ~porn~ is made by actual humans making their living and 2. WAY MORE than “just porn” is being targeted

This along with Facebook continuously upholding white supremacy by letting nazi shit fly by while they ban people for speaking out against their oppressors and it’s basically like we’re running out of truly free places to just… BE

[phdincrohns]

wow ok so i just searched chronic pain on mobile to test this out and its true, there’s just nothing in the tag

sooo i guess i’ll be considering moving platforms? thoughts?

[staff]

A better, more positive Tumblr

Since its founding in 2007, Tumblr has always been a place for wide open, creative self-expression at the heart of community and culture. To borrow from our founder David Karp, we’re proud to have inspired a generation of artists, writers, creators, curators, and crusaders to redefine our culture and to help empower individuality.

Over the past several months, and inspired by our storied past, we’ve given serious thought to who we want to be to our community moving forward and have been hard at work laying the foundation for a better Tumblr. We’ve realized that in order to continue to fulfill our promise and place in culture, especially as it evolves, we must change. Some of that change began with fostering more constructive dialogue among our community members. Today, we’re taking another step by no longer allowing adult content, including explicit sexual content and nudity (with some exceptions).  

Let’s first be unequivocal about something that should not be confused with today’s policy change: posting anything that is harmful to minors, including child pornography, is abhorrent and has no place in our community. We’ve always had and always will have a zero tolerance policy for this type of content. To this end, we continuously invest in the enforcement of this policy, including industry-standard machine monitoring, a growing team of human moderators, and user tools that make it easy to report abuse. We also closely partner with the National Center for Missing and Exploited Children and the Internet Watch Foundation, two invaluable organizations at the forefront of protecting our children from abuse, and through these partnerships we report violations of this policy to law enforcement authorities. We can never prevent all bad actors from attempting to abuse our platform, but we make it our highest priority to keep the community as safe as possible.

So what is changing?

Posts that contain adult content will no longer be allowed on Tumblr, and we’ve updated our Community Guidelines to reflect this policy change. We recognize Tumblr is also a place to speak freely about topics like art, sex positivity, your relationships, your sexuality, and your personal journey. We want to make sure that we continue to foster this type of diversity of expression in the community, so our new policy strives to strike a balance.

Why are we doing this?

It is our continued, humble aspiration that Tumblr be a safe place for creative expression, self-discovery, and a deep sense of community. As Tumblr continues to grow and evolve, and our understanding of our impact on our world becomes clearer, we have a responsibility to consider that impact across different age groups, demographics, cultures, and mindsets. We spent considerable time weighing the pros and cons of expression in the community that includes adult content. In doing so, it became clear that without this content we have the opportunity to create a place where more people feel comfortable expressing themselves.

Bottom line: There are no shortage of sites on the internet that feature adult content. We will leave it to them and focus our efforts on creating the most welcoming environment possible for our community.

So what’s next?

Starting December 17, 2018, we will begin enforcing this new policy. Community members with content that is no longer permitted on Tumblr will get a heads up from us in advance and steps they can take to appeal or preserve their content outside the community if they so choose. All changes won’t happen overnight as something of this complexity takes time.

Another thing, filtering this type of content versus say, a political protest with nudity or the statue of David, is not simple at scale. We’re relying on automated tools to identify adult content and humans to help train and keep our systems in check. We know there will be mistakes, but we’ve done our best to create and enforce a policy that acknowledges the breadth of expression we see in the community.

Most importantly, we’re going to be as transparent as possible with you about the decisions we’re making and resources available to you, including more detailed information, product enhancements, and more content moderators to interface directly with the community and content.

Like you, we love Tumblr and what it’s come to mean for millions of people around the world. Our actions are out of love and hope for our community. We won’t always get this right, especially in the beginning, but we are determined to make your experience a positive one.

Jeff D’Onofrio CEO

[zerachin]

[phdincrohns]

So my take on this after talking to some friends is that it will not affect written content. However, I have critical issues with the way this is being presented and practiced, so I will be taking some time to think on what to do. I don't want to abandon my spoonie community here, but I also don't want to feel like I have to police what I am writing about based on arbitrary rules (eg. only "female-presenting" nipples are considered nsfw, even if breast feeding imagery is still allowed). How long before things like discussing sex work and drug use are considered "adult content" and banned as well? Tumblr is not known for making well-thought out decisions beneficial to the diverse community, as we have seen over the years.

[daggerfall]

Back pain? Have you tried:

[liberalsarecool]

Please spread the word that enrollment for health care ends Dec 15. #obamacare

[phdincrohns]

my eternal dilemma: central heating is unbearably dry in the winter resulting in sinus and lung problems, but humidity promotes growth of dust mites resulting in sinus and lung problems 🤔

[phdincrohns]

ps praise jesus or whatever for cough suppressants ✌️

[phdincrohns]

update: have purchased a humidifier and a jug of distilled water at least i can control my reaction to dust mites with medication shruuuuug now the question is, did i sleep through the night last night because of the humidifier or was it a fluke?

[newyorker]

Porochista Khakpour’s deliberately unheroic “Sick” raises questions about what we expect of female patients with chronic illness.

[phdincrohns]

my eternal dilemma: central heating is unbearably dry in the winter resulting in sinus and lung problems, but humidity promotes growth of dust mites resulting in sinus and lung problems 🤔

[phdincrohns]

ps praise jesus or whatever for cough suppressants ✌️

[phdincrohns]

my eternal dilemma: central heating is unbearably dry in the winter resulting in sinus and lung problems, but humidity promotes growth of dust mites resulting in sinus and lung problems 🤔

[phdincrohns]

Heard about this audiobook on Bitch Magazine and got it with my public library account on hoopla - thought others my be interested! It's about a professor with late-stage Lyme.

[phdincrohns]

Simulation of brain fog - Nicole Brown

Brain fog is difficult to explain. So I tried to create a simulation of an episode of brain fog.

This is super interesting. I absolutely get the zooming out feeling and my vision will unfocus. I’ve never experienced being unable to hear someone talking, though - for me it’s more like I can’t hold on to the words that are being said long enough to comprehend the meaning.

What are some other brain fog experiences you’ve had?

[undercover-crohnie]

When brain fog hits when I’m actively trying to think about something, it feels like I start to become less receptive to my own thoughts. I can feel that they’re there but they just start to get further and further out of reach for me to process. If I’m talking about something, it’s more distressing than when you just lose your train of thought. Brain fog is indeed difficult to explain. 

[phdincrohns]

Simulation of brain fog - Nicole Brown

Brain fog is difficult to explain. So I tried to create a simulation of an episode of brain fog.

This is super interesting. I absolutely get the zooming out feeling and my vision will unfocus. I've never experienced being unable to hear someone talking, though - for me it's more like I can't hold on to the words that are being said long enough to comprehend the meaning.

What are some other brain fog experiences you've had?

[phdincrohns]

i am literally procrastinating by giving myself a b12 injection, that’s how much i don’t want to work on my dissertation right now

[thorffour-deactivated20190920]

[nbeenary]

[lauralot89]

Hey everyone, so you know organizations like UNICEF and whatnot that allow you to buy the kind of gifts where you donate mosquito nets or something in a person’s name?  Well a lot of those organizations will let you donate vaccines, as it turns out.  Like, right now on UNICEF’s site, providing 100 polio vaccines to kids in need is 19 USD.  And I’m not saying you should buy it and then send a card to an anti-vax relative saying you’ve provided lifesaving vaccinations in their name, but actually that’s exactly what I’m saying

[phdincrohns]

How to Get Medical Care With or Without Insurance

Crucial questions about mental health, abortion, trans and gender non-binary care, and more—answered in a way you can understand.

Some good shit about difficult healthcare topics, including advice on navigating care for recovery from opioid addiction from someone in recovery.

[airlesscell-deactivated20151002]

Up in the club like

My stomach is not feeling well can I have a ginger ale please