This is the October 2018 edition of this post, and hopefully the final version.
Dessie is now ten years old. Yay!! For the last two years, she’s held steady at 22% total kidney function, in Stage Four Chronic Kidney Disease. At her last nephrologist visit, her creatinine has gone up. She says she’s tired all the time.
We think she’s tipping over to Stage 5 CKD/End Stage Renal Disease. Her next visit to the nephrologist is in December, and I’m expecting to get the diagnosis then. If not, great! But I’m not hopeful.
I think we’ll need to make another trip to Seattle Chikdren’s Hospital then, so they can run their own labs and make her active on the deceased donor transplant list. Normally, I’ve been told by them, once a child is active on the last, they typically receive a donor kidney within six months to a year. So I think 2019 will be her year of the transplant. Possibly dialysis before then — I know her local nephrologist wants to avoid it if we can.
The transplant itself requires we stay in Seattle for three to four months, with frequent follow ups afterwards. (First every month, then every two months, then every three months.). Each trip by car takes 6.5-8 hours each way, and usually two tanks of gas. Special Mobilty Services can help with gas, and lodging, if we can give them two weeks notice.
The transplant will be a journey in every sense of the word. I would love it if this could be fully funded before then.
If you have a spare kidney and want to try to be her living donor, here’s the Donors need to between 21-45, in reasonably good health, and O+ blood type. No smoking or drinking alcohol, not even occasionally. If this is something you’re interested, please contact the University of Washington’s living donor program at 206-598-3627, and mention you’re interested in donating to Dessie McAdams. That begins the process.
I’m a single mom, with three kids. To deal with my hideous finances which have put us in the negative regularly since May of 2017, to get us back on our feet, we are moving in with my mother for at least the next year. Perhaps longer; she hasn’t put a deadline on it. I think I’m going to have to declare bankruptcy to get our from under, which will tank my already bad credit score. So I’m not sure of our prospects afterwards; if I could, I’d rather buy a place than rent, but even renting will be hard, with bad credit and high rents.
In the most immediate future, we need about $300-500 through October to either rent a dumpster or hire a junk hauling service to clear out the backyard, garage, and basement. There’s a lot of heavy stuff my mom and I can’t handle.
This move to my mom’s also gets us away from my ex and his family, and Imbin the process of getting the parenting agreement modified to supervised visitation. He molested Dessie, by her account, sometime while we were married, around when she was 4-5. (I reported it to CPS and the police as soon as I learned of this, but as it was some years after it occurred, there was no evidence and they did nothing).
He’s also verbally and emotionally abused all of us.
His family may decide to bring in a lawyer for him with the requested change in parenting plan; I don’t know.
I guess what I’m saying is, once we move we’ll be doing better than we have in a long while. But help is still needed. A miracle, even, if it could be so, to get us through her transplant and from there to a safe place to live independently. Please get this fully funded (or more) as soon as possible, if it can be done.
If you don’t want to use the GoFundMe, that’s fine. We also have
PayPal.me/kerryren
Venmo@KerryRen
SquareCash $KerryRen
And CirclePay at kerryren@yahoo.com
If using these, please let me know who you are and if you’d like to be publicly thanked. Not all the apps are conducive to interactions, I’ve noticed.
We are incredibly grateful for all the help we’ve received through tumblr so far. You guys have literally helped keep us alive.
If you can’t donate, don’t worry about it. If you don’t want to, don’t bother me about it. Boosts and reblogs still help, though!
Here, have a cute pic of Dessie with a plush kidney a mutual sent her!
On 12/18/18 we’re going to see her nephrologist, where I fully expect to learn that she’s tipped into Chronic Kidney Disease, Stage Five/End Stage Renal Disease. Then I’m pretty sure we’ll need to make another trip to Seattle Children’s Hospital to activate her on their deceased donor list. (She’s on it, but st on-hold status).
As they prioritize children as donor recipients, typically once active in the list, a child receives a needed kidney within six months to one year. So it’s quite likely 2019 will be her kidney year.
If there’s any way we can get this fully funded before then, I don’t know how I’ll express the depth of my and my family’s gratitude.
I’m planning to stick around here until further notice, at least.
But, if anyone wants to add me on Twitter, it’s @Urocyon
I haven’t been spending much time over there for a while, though that will likely change. If/when I get active accounts going elsewhere, I’ll try to update this. Please let me know in replies if you’d like tagged on that.
Pornhub’s entire business model revolves around stealing content made by
sex workers without their consent and profiting off it with no
compensation to the workers who generate the content they steal.
Sex
workers are an incredibly vulnerable and stigmatised class of workers, mostly women,
mostly younger, mostly not rich, with little recourse, socially or legally, against a massive
corporation like Pornhub.
Pornhub relies on this, on how little you care about sex workers, to maintain a business
based on stealing their livelihoods.
Stop applauding a
corporation that literally exists to steal from marginalised workers just
because they have a competent PR department.
Fucking thank you
I’m not defending them but isn’t that true of all porn sites?
Yes.
This is going around again because Pornhub have apparently been billing themselves as an alternative to Tumblr for artists and sex workers and it was made originally because as they say, Pornhub has a very clever PR department (I’m thinking in particular of the snow plowing stunt last year) and people have a tendency to fall for it.
Pornhub pays 69 cents per 1k views while Youtube pays $7.60 for the same amount of traffic.
If someone steals your porn and uploads it, Pornhub requires that you doxx yourself to the uploader.
We believe it is of utmost importance for users to have control of their content and how it is accessed. Tumblr’s structure encourages users to think of other people’s content that they reblog as partially their own, but we think that that mentality leads to a lot of the harassment and plain rudeness that has grown on Tumblr over the years. The fact that a post can be reblogged by others, ridiculed, and passed around endlessly after the original user has already decided they don’t want that content to exist and represent them anymore has always struck us as a massive design flaw. On Pillowfort a user’s post is always their post first and foremost, and all reblogs and comments to that post are still under the control of the original user. So yes, while it may be unfortunate to have a post you like disappear from your blog or lose a comment you left, we think it is still more important for a user to be able to delete their own content when they choose.
I can’t think of any benefits to non-destructible reblogs that is worth having a
user’s control over access to their own content taken away.
It’s worth noting that users can also delete any individual comments left on their post, because we want to encourage the notion that when you comment on someone’s post you are in THEIR space. It’s a bit of a shift from the way that Tumblr and Twitter have forced users to deal with anyone and everyone putting their own thoughts on your content, but we don’t think users should have to deal with the responses of people who may only be trying to spread harassment or otherwise exploit users’ lack of control over responses to act in bad faith, as we have all seen happen quite often.
I just want to make sure people thinking about migrating to pillowfort see this one, because this is an incredible example of a policy that was clearly not thought through by people who have ever tried to keep abusers from doing their thing.
This is a great policy, if your primary goal is to ensure that abusers cannot be challenged or disputed, ever. It is a great policy if you want to actively punish people for putting in any effort at all in conversations.
Yes, we think of things that we write in response to other people as “partially our own”, because we wrote some of the content in the post. When people put effort into responding to me, that effort is theirs. If I make a silly shitpost and someone responds with a 2,000 word essay, their post was more effort than mine.
Fuck’s sake. Look at the writing prompts blog. Think about how this plays out in Pillowfort’s world: You post writing prompts which are a sentence long, other people write multi-page responses, and you get to delete any of those responses any time you want leaving them with no record of the work or effort they put in, no way to retrieve the data, nothing.
Conclusion: If you go there, do not attempt to interact with other people. If you want to comment on something someone said, do it by starting a brand new post with no trace of direct connection to theirs, so it will probably be safe.
But really, just… Don’t. This is not sane.
“We designed a reblog system that discourages people from ever substantively using the reblog system.”
The maddening part is that I get it. That first paragraph does lay out real ways in which Tumblr is uniquely good at making sure that the dumbest thing you ever said on a social blogging platform becomes an unbanishable ghost that haunts your notifications forever. Clearly that’s not ideal.
But this doesn’t seem like a solution to me.
Why not, say, keep the content but divorce it from the original poster? Any deleted comments show up in reblogs with no attribution, or just a grey “deleted” icon, while disappearing from the OP’s blog.
That’s one thing that Twitter gets closer to right, from what I’ve seen. It even seems much better to just show that any particular post no longer exists, through the reblog chain, rather than making it possible to also delete what other users have written.
Pillowfort is not a clone of tumblr, and does not have a reblog like tumblr.
Pillowfort reblogs are shares that point to the original post. You can’t add commentary to them.
Comments all take place in replies to the post, like livejournal on the OP’s blog. You’re not pulling them into your own space. Anyone who wants to read the full comment chain is going to the OP’s blog. Replying happens in OP’s blog. Again think of livejournal.
Abusers creating echo chambers or loosing your replies on the internet isn’t a uniquely pillowfort thing. This happens everywhere on the internet, and it existed before social media as we know it was a thing. Acting like it’s the fault of a one site’s policy is silly.
Thanks for the clarification, as someone who hasn’t yet used the site.
I understood that the basic setup was more like LJ/DW, but wasn’t sure how the reblogging function was implemented. If all responses are going directly onto the OP’s blog, that’s a bit different.
So I made a tweet about how Maciej Ceglowski (aka Pinboard guy) should consult with fandom on how to build a new fandom platform inclusive of not just text, but images and multimedia.
And then Maciej DMed me and said if fandom (I realize this does not include all parts of fandom) can get a consensus spec of what this platform should consist of, he’ll see what we can do. I have split the document into requirements and nice to haves. I know I’m not going to get everything, but hopefully this is a good enough start to get the ball rolling.
I kind of laughed like “Haha, what hubris, my tech friends say it’ll take a couple million dollars to create a platform like this, one does not simply walk into Mordor” but then all my tech friends were like, “Uh, hon? It’s Maciej Ceglowski. He either HAS a couple million to spend, or can talk his friends into fronting the money.”
Nomination: Tumblr’s set up but with functional black and white lists. X-kits features. AO3s tagging and tag wranglers.
Keep the basic format of tumblr but make it more functional. First keep the dashboard, following system, multi-blogs, image sharing as well as plain text and audio/video posts, etc.
Then make blocking work, include a more robust search function, and have a real content policy that prevents Nazis from setting up shop. Set up a spam reporting function that works, to prevent the porn blog apocalypse we had here (to where you couldn’t follow the notes anymore because they were so full of spam). Include a hate speech reporting function that will actually be enforced. Plus incorporate the features that xkit already designed.
>Industrial waste pollutes water >Filter feeders process waste and store toxins in their bodies >People harvest shells for art >Artist suffers from exposure to toxic materials, suffers for years with debilitating mental and physical symptoms.
She will NEVER recover.
People act like environmental pollution is always something happening “somewhere else” but we’re all breathing and eating and drinking it and it should really put some shit into perspective that just having a hobby around seashells turned this woman’s household dust into a death trap.
“Hobby” ?????
oh wow i didn’t even catch that (wasn’t reading the reblogs as carefully as i should have been).
Gillian Genser’s art is incredibly intricate, time consuming (she spent 15 years on these sculptures, often working on them up to 12 hours a day) and evocative. She gave years of her life and sacrificed her health to make these sculptures, working on them even after she became ill. It’s not a hobby around seashells, and characterizing it that way is a disservice to the incredible work this artist has put into her craft.
She writes, I’ve experienced the suffering of so many creatures trapped in their polluted habitats. I now hope their voices can be heard—that my art might create a sense of awe, a sense of connectivity and reverence for the natural world.
I often think of Beethoven, who suffered from lead poisoning; he lost his hearing and producing his work became an angry struggle. In the end, he had to create his music from the memory of sound. I was creating my art from the memory of joy. When I look at Adam, I feel grief—both for myself and our planet. But I also feel satisfaction because he is magnificent. That’s how I find my hope. I call him my beautiful death.
This is a really good clarification and I’m glad you wrote it!
I’d also like to add that the dust produced by grinding down shells is not “household dust”. There are many artistic practices/fields that involve working with hazardous dust (for example, ceramicists need to take precautions against silicosis, an incurable, potentially fatal condition caused by inhaling ceramic dust which contains tiny tiny glass shards). Artists like Genser are aware of this; this woman is someone who went to work aware of these risks, took the workplace precautions she believed were necessary according to the accepted standards of her field, and is dying because those standard precautions (which countless artists in numerous fields rely on! Seashells are just one material artists use that comes from the earth!) are no longer adequate due to environmental degradation. Framing this as a “hobby around seashells” that produced toxic “household dust” not only is a condescending, minimizing, and frankly misogynistic way of talking about an extremely accomplished creative professional, it undersells the nature of this problem on a larger scale; this is a workplace hazard for many, many people, and it is directly tied to workers rights and safety.
Urocyon's Jaunts 2.0 
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