#I very genuinely have not been this sick since I had Covid almost 5 years ago

[corynm]

Some links and things, because I might need a little help right now 🩷💫

I’ve been sick for a week, which means no work at my hourly job, which means no paycheck this week. Which is…not the best spot to be in.

If anyone can/would like to help me out a little bit so I’m not at a total net loss, here are some links for art and books and things!

⚡️ETSY : for stickers, keychains, enamel pins, and art prints

⚡️KO-FI : for signed copies of my books

[shoutyourporpoise]

Genuinely figuring out that you’re likely super allergic to to a common cosmetic dye feels like the opposite of that post about The Vitamin.

After months of nail polish suddenly and inexplicably sending you into days-long fits of fevers, you try painting your nails again with a new base coat and are down with a fever in just an hour. You look at your Lacquergram and realize it all started to get really bad around June, when you bought a new top coat. You pull up the ingredients lists for that and your previous top coat, and the lists are nigh identical save for...hey, what's "Violet 2?"

You have a sudden fevered hunch, and start to hunt through your nail polish collection. None of your old polishes have this ingredient, and nearly all of your new ones do. You'd been thinking it was acetone poisoning because sometimes the fever would happen, and sometimes it wouldn't. But even that shouldn't shut you down for 5-day stretches...? Looking back over your mani pics, you realize that every time you failed to have a reaction was when you used a polish free of Violet 2.

You remove your polish and your fever goes way down within 30 minutes (though you will continue to have spikes as you recover over the next several days). You look up this "Violet 2," which has apparently wrought such havoc on the past few months of your life, and the color looks....very familiar. With a sickening lurch, you head to the shower to find your hair custard, into which you'd mixed a protein color filler to keep your base cool. The product itself has been discontinued, so it takes about 10 minutes of focused searching to find the ingredient list and...yep. Violet 2.

You remember that you've spent the last two years telling your friends that you get more sick, more easily, and for longer since you got COVID in November 2022. That may be the case but...looking at the timeline, you started using this color filler in October of that year, too.

Another hunch leads you to your semi-permanent hair-dyes, which are, of course, mostly cool, vibrant purples, because that's your favorite color. An easy two thirds of your hair dye have Violet 2 in them. You started using this brand in the summer of 2023, when your menstrual cycle suddenly and inexplicably became 70 days long. Your doctor couldn't figure out what was wrong, but said with your weight it must be PCOS ("Really?" you'd asked sarcastically. "Was it the last pound I put on?"). Then, just as suddenly, your cycle went back to normal. Selfies indicate that this is when you cut your hair and went dye-free for a while.

So now you're facing the possibility that almost every major inexplicable health issue you've had over the past two years might be due not to lack of The Vitamin but because you have been unknowingly ingesting The Poison basically twice a week. All this time? You were slathering The Poison on your scalp and nails? And yet you persevered?

[gingerbravecookie]

it sure has been a year: cursor's kind of retrospective (or resume idk) on 2022

happy new years everybody,, or new years eve depending on where you live at the time of reading this

I'll go straight to the point 2022 has been one of the most mixed bag of a year I've had since i have the memory

The start of the year was kinda cool honestly,, the weather in my country was great and i was starting to get new interests,, of course also expecting you know what games near the end of it,, going back to normal class was weird and tiring but i got to make new friends and recconect with old ones i hadn't talked to since the start of the pandemic,, i got to see the coolest fucking movie at the start of april and i loved it,, i had also met kit and joined pocket home and i met good people in there shout out to everyone,, the start of the year seemed pretty good

and then things started going downhill

for starters right at my birthday i started feeling kinda weird,, specially my nose felt funny,, the next day at school i was barely on my feet,, with my entire respiratory system in shambles,, with an awful fatigue and trembling every single moment,, i wanted to go to the nurse's office but i persisted due to having to show a cosplay i worked hard on that same day

long story short the next day arrived and i got positive for covid,, i spent two weeks at home

it didn't help that i missed multiple tests due to quarantine and had to do 5 the same day,, my stress level was on the god damn clouds

in that next month i caught colds and stuff way more easily but hey,, it was june!!! pride month!!! Gay month!!!! also i had finally decided to get into artfight and was ready to make refs for my oc's

Also i had made my very own server and got to meet cool people!!! shout out to kino,, harp and jaz

and then right before winter break started and got time to work on them and the event itself my knee snapped off

yes it did hurt like hell,, i went to the hospital and luckily i didn't need surgery but it was still awful,, i got out of the thing at 3 am and i couldn't even move

I spent the first few days of july on bed,, when i finally was able to barely walk again i got to do a few art fight attacks but then my family from the capital arrived and i couldn't access my laptop for two weeks,, i was pretty bummed out i barely got to do attacks AND that i had to be almost every single day to the doctor in order to heal my leg

also i joined ballcord and then maincord as my cookie run interest started coming back to me

anyways september came along and of course it was independence day for chile,, cool date tbh,, and i decided one of the most drastic meassures i took on my irl image,, i cut my hair

"what's the great deal with that" thing is i've had my hair pretty long and i didn't like cutting it at all,, but as i grew i pretty much realized i was growing out of it and it also became more tiring after it getting tangled everywhere,, best desicion of my life tbh it felt great

I got the funni squid game 3 as well

well i also continued getting sick as a downside of things,, which was weird as fuck since years prior i only got sick at least once a year

my school situation became worse every day,, my grades started lowering and to top that. i started getting bullied. again

i had been on that school since 10 fucking years and they still fucking bullied me,, none of the teachers did shit about it

my mom got an interview at school where they took account of my anger issues and fucking guess what happened there

after years and years of asking i finally got therapy

proper therapy as i had a meeting with one of them before and he just said i was a spoiled child lmao

so news!! I'm pretty much part of the autistic spectrum,, with very minor traits according to my therapist but yeah pretty much that

she's a cool person,, she really helps me and i mean that in a genuine way

my family. well,, they're trying,, our relationship has gone two sides and sometimes made me feel kinda shitty tbh,, anyways back to topic

even if my teacher knew about the bullying it still got worse and worse from heavy verbal abuse to almost physical attacks

the school said they would talk to the bullies and me to get to an agreement and then. never talked to me again

it would all come to a close in early november,, after i snapped in front of the whole class about it

i had a massive panic attack

i had to ask my mom to come get me early and i had to talk to the teachers where it turns out. they talked to the bitches but never to me.

if i had known that then i could have told them so they would actually stop

and then they started twisting the blame onto me for staying quiet when they didn't fucking tell me shit to start

anyways,, my mom decided i wouldn't go to that school again,, i have been home ever since,, we are hoping another school accepts me in the meantime

As of social media well. i have gotten into a few projects i want to really get through,, i still need to do owed art and i apologize for making it so late. i really really do

my first comic project,, a game (RPG maker Is a bitch sometimes btw) and of course my askblogs and au's,, I'll try to get them fully moving in 2023,, i really want for everyone to see what i have to tell storywise

also i hope i stop getting sicker lmao

i guess this Is going nowhere tbh,, kind of a long resume of the shit that happened to me this year and an excuse for why i barely post decent art and ideas here nowdays (sorry),, but hey at least i met cool people

thanks for sticking around Is pretty much what i have to say

2022 has been kind of a bitch,, here's to hoping 2023 Is at least a little bit better

happy new years everyone,, happy to still be here

-cursor

[theblotsays]

“We’re all just doing our best, threaded to a hospital bed” Timed Edition Screen Print by Daniel Danger x Bottleneck Gallery

Yesterday, Bottleneck Gallery put together an epic new release to aid the lost boy-king of Ghost Island, Daniel Danger, with all proceeds from the sale of this print going to the beloved artist to help with the health issues his family has been dealing with lately. This is an art print of a gig poster for a recent Primus concert designed by Danger. “We’re all just doing our best, threaded to a hospital bed” by Daniel Danger is a 24”x36” signed and numbered 7 color screen print. The run size for Version A and Version B will be set by the number of prints purchased at BottleneckGallery.com from now through 11:59pm ET on Thursday, April 18th. Each print will retail for $75 or you can purchase a matching number set for $145. As BNG explained, “Daniel Danger is a legend. Initially beginning as collectors before creating Bottleneck, we’ve been mesmerized and drawn into Daniel’s brilliantly melancholic art for almost two decades. Daniel’s long-spanning print career has always orbited around gig posters, and despite having one of the most riveting and successful years of his artistic career recently, Daniel and his family have also been dealing with serious and severe health issues. It’s been a genuine dream working together with Daniel, and we want to give back to an artist that gives this corner of the art world so much of himself. We’re teaming up with Daniel to release an art print edition of his recent Primus gig poster – an absolute stunner, we should add – and 100% of the proceeds from this release will go directly to Daniel and his family.” From the artist, Daniel Danger: “I’ll avoid getting into specifics, but my wife Rebecca has been very sick the last few months. 48 hours after I was discharged from the hospital from my own two month battle with septic level post-covid pneumonia and the discovery of a pulmonary embolism, I was suddenly carrying her into the ER one Sunday night. Our life since has just been hospital stays, a half dozen ERs, a couple ambulances, endless specialists, and a confused five year old. She’s currently a quarter step above outright disabled, unable to do much of anything, and it’s been an intense, engulfing and terrifying experience for our family. My wife and I are both small business owners; she’s a freaking saint and works with people largely on the autism spectrum, and I obsessively draw weird houses and ghosts because of the autism spectrum. We’re by no means financially doomed by this, but back-to-back completely debilitating illnesses have pretty much annihilated our savings, as being sick in America is very very expensive, and two businesses were left hemorrhaging money in our absence. Simply put, if you can, now would be an extremely good time to pick up a Daniel Danger print. There’s an old house in Florence, MA on the way to our doctor’s office that someone’s been slowly gutting, and I’ve been watching this play out in real time as we pass it, which has been a regular thing since I was near death a few months back. I’ve been thinking about our failing medical system, about Hygieia the goddess of health, angry about prayer, about the fun trip to CA we were supposed to take with our 5 year old daughter, about the fast food I stress eat in the car, about this beautiful person in my life threaded to a hospital bed, to an ambulance, to a failing house that hopefully gets rebuilt, and all I can do is stand atop it all and try and do my best to keep it together. A looming forgetting of being carefree, of youth; existing in the shadow of the happiest place and feeling overwhelmed by its absence. This started as a gig poster for PRIMUS, I was sketching but I didn’t even really think about the band, other than knowing Primus of all bands would be OK with me doing what I *needed to* creatively, what my brain had to get out. The band would be the temporary carrier of these feelings. I spent the last few days reworking the piece to a larger format, expanding the colors, and doing a lot of cleanup work on this bizarre illustration I did while deliriously tired, and… http://dlvr.it/T5qWGf

[zashamalkin]

Translation of Anna Kasterova’s live interview on 5/29/20.

Thanks to my amazing Gino Anon, the entire interview is translated below the cut. Final word count, btw, is 2405 so like, send big thanks their way. Holy shit! 

Anna got sick few days before the interview. Not covid, just a cold, that later turned into otitis. It was very painful, but now she’s feeling way better, though she still has some trouble hearing with her left ear. They talk a bit about the weather in Miami (it’s been raining there for a few days, but it’s still pretty hot). Igor asks if they’re allowed to swim during the quarantine. Anna says that the 1/ 

beaches were recently open, but there are obviously rules about keeping the safe distance. “Is Zhenya a good swimmer?” “Yeah, he’s great. He’s spending a lot of time with Nikita, teaching him how to swim. More in the pool though, than in the ocean.” “How do you and Zhenya feel about the latest news in NHL?” “I think, the idea is pretty good. Everyone has been waiting on some news about this season. I asked Zhenya if he preferred for the season to be cancelled. He said, he wanted to finish it 2/ 

properly. This season has been great for him, he’s in a great shape. And even though he hasn’t been skating for 2 months, he’s still been training pretty hard, running, roller skating and he didn’t lose his shape.” She thinks everything is turning pretty good so far and it’s great that the teams will have a time for training camps and a chance to go to playoffs.“In your opinion, were the players mentally prepared to continue the season?” “I think, those, who genuinely want to go to playoffs, 3/ 

have been working very hard to be ready, when the time comes. But, for sure, there are some players, who spent more time relaxing, rather than training. A lot of teams are asking their players to come back and start training on the ice and not all of the players follow their instructions.” “What are the rules about practice right now? Are they allowed to train in groups or…?” “There are no details about it yet. It haven’t even been decided yet, what cities will be chosen as Hub cities. So far 4/ 

the coaches are asking players to stay in shape. They have video calls together, where they go through different footage every time. But, as far as I understand, the organization and the coaching staff are ready for the players to come back.” “How do the players feel about the new rules for playoffs this season?” “No negative feelings. They’ve been under a lot of mental pressure, not knowing anything about the season and the playoffs. Everything seems pretty logical and they’re very happy to 5/ 

get back on ice and to have a chance to fight for SC.” “Is there any inside information about what cities will be chosen as Hubs?” “No one knows anything for sure. But I know that they’re very carefully considering epidemiological situation in the cities and will choose the safest options. ” *I SUCK at translating hockey terminology from Russian to English, so I’m sorry if anything is incorrect.* “Do you think it would’ve been fairer to include the numbers of “play-in” (I have no idea what he 6/ 

means by “play-in”) as well as the Robin Rounds into the statistics of regular season? Because it would give the players, like Ovechkin and Panarin, and Malkin to gain more points.” “It’s a very difficult question. But I’m sure NHL and NHLPA have gone over all the possible scenarios and have chosen the best one.” “How has Geno been handling the quarantine?” “He’s been very calm and collected. He’s been doing great mentally, smiling and cracking jokes, and keeping us safe and happy.” “Why did 7/

your family (meaning Geno, Anna and Nikita) decide to do a covid testing in early April?” “I had a pneumonia in November and wanted to find out for myself, if it was covid-induced, if I had any antibodies for the virus. But all the testing came back negative. None of us had it.” “What books did you and Zhenya read during the quarantine?” “Zhenya likes to read fantasy books. He’s been reading “Quantum Warrior: The Future of the Mind” by John Kehoe.” “Does he read in English?” “No, in English 8/

he’s mostly watching TV shows.” “I was very impressed by the story, that after his 1st season in NHL, Zhenya hired Russian language and literature teacher.” “He’s had a lot of free time these past 2 months and he’s hired 2 tutors: English language tutor to work on his grammar and Russian language tutor. (*Sorry, I don’t know if I need to explain this, but Geno obviously knows how to speak Russian. What I think Anna means here, is that the pronunciation of the words in Russian changes depending9/

on where the person is from. Every region has its own accent. I think, what Geno is trying to do, is lose his Magnitogorsk accent and start to speak clearer Russian, like ppl in Moscow of St. Petersburg do.*) He has classes with his tutors Monday to Friday. I’m very happy for him.” One of Geno’s friends in Russia has been robbed recently. Igor is asking Anna, if they ever considered buying a gun, since it’s allowed in US. Anna says no, they feel safe and they live a good neighborhood. She 10/

doesn’t think it necessary or appropriate. They talk a bit about Ovi’s second child being born recently and if Geno and Anna are planning on having a second child any time soon. “Of course, we wouldn’t mind having another child. If it happens, we’ll be very happy. I would like to have a girl, though.” “What’s the best way to describe Zhenya’s and Ovechkin’s relationships today? Are they friends or rivals” “Both. And healthy rivalry is very important in order to reach their personal goals.” 11/

“When Caps and Pens play each other, is it possible for them to go have dinner after.” “No.” “What can you say about the relationships between Zhenya and Sidney Crosby? When we talked with Zhenya last year, he said very nice and kind things about him. Even though Zhenya is in Sid’s shadow a lot of the time.” “I can talk about it for hours. They push each other and make each other stronger. But they also can step in and do more than anyone, when the other is hurt and not playing. Off the ice, 12/

they are very good friends and they support each other. Have I ever thought about what his life would be like, if he was the only star player in a team? I think, he’d be the best player in the whole NHL. He’s very intelligent in terms of building a game, always plans 2-3 steps ahead. He’s very fearless in his game, very talented and vey multilateral player. He’s very unique. They won together THREE STANLEY CUPS! No one's saying Crosby is less talented. He’s an incredible player, he works very13/

hard every day. They are 2 number 1 players in this team. If Zhenya ever asked me if I’d like him to play in New York, f/e, I’d say, no. Pittsburgh is his city, his home. And management and coaching staff are also a very important part of team success. The relationship inside the team is very important. And Pens are the best in that, imo.” “You two watched Super Bowl at Sid’s place. What’s it like there?” “It’s a tradition. Every year Sid invites the team with their wifes/gfs/kids to watch 14/

Super Bowl. His gf Kathy does all the cooking. She’s a very geart person, very hospitable. *omg, this is the first time I hear any1 talking about Sid’s gf 😀, aww* Everyone on the team is very open, very kind, they are great guys. It’s the best thing about Pens. So we’re always happy to accept Sid’s invitation and we always have a great time.” “Do you want Nikita to become a hockey player?” “We’re not gonna push him to it. If it’s something he wants, sure. But I have big plans for his 15/

education. I’d like him to know 2 languages, (English) and Russian, especially grammar, not just being able to speak it freely. I’m studying with him and for an almost 4 yo he already knows quite a lot. And it’s always very hard for a child of a parent, who has achieved so much, to surpass that kind of success. And I don’t want my son to have this kind of pressure on him. I don’t want him to be known solely as “Malkin’s son”. For me it’s very important for him to get a good education and to 16/

choose his path in life.” “Talking about the tv series about Michael Jordan, would you like a bio series to be shot about Zhenya?” “I know he wants to act, in a tv series or in a movie. He talked about it many times. As for a biopic, of course I would like that. He has a huge success story. A man from a simple, working class family. It’s very expensive to play hockey. And he was so talented even in a young age, that his coaches would sometimes bring him a puck, or a stick, or a uniform, for 17/

free. Add to that a story about him finally getting to NHL.” “Zhenya said once in an interview, that you fight sometimes about him not being open enough w/ you, not sharing his problems etc. Has it changed during the quarantine?” “Everything’s been great during quarantine. During the season, he’s under a lot of pressure and always takes it hard if the team loses or if he doesn’t score. Right now he’s very calm and happy, and everything is great.” A question about a conflict around Geno having18/

a USA passport (a lot of people in Russia, his celebrity friends especially, weren’t happy with that, and judged him for that). What does Anna think about it? “He’s a patriot. He loves his country and his city. We were in a hopeless situation, when I needed to get all the documents ready ASAP, and we needed to get married, and him having a US passport would speed that up. You could say, he did it for me. On the other hand, America is his 2nd home. He spends here more time than in Russia. He’s19/

been working here for years. Why is that such a big problem? It’s not like he turned his back on Russia or anything.” Then she talked about Geno’s donation to families in Magnitogorsk, who suffered bc of explosion that happened there in December 2018, and how much he gives to his community in Russia, that ppl don’t know about, bc he prefers not to advertise it. Then Igor keeps asking political questions and Anna is getting more and more irritated by them. Geno publicly supported Putin’s 20/

reelection whenever that was, and interviewer is asking whether him having an American passport is appropriate, considering that he’s a part of Putin team? “Why is it inappropriate? America and Russia are not enemies. Yes, there are some unresolved political issues. They are 2 huge countries, of course they will always feel threatened by each other. But I don’t see any serious political confrontation. Maybe bc we’re in US right now. But Zhenya has a great respect for his president. *bleh, I 21/

don’t like Putin. I know, she has to say nice things about him, bc as long as Geno is a part of Team Russia and wants to have a life in Russia, they can’t be openly against him. But both Geno and Anna don’t strike me as ppl, who will support Putin’s ideals. Sorry for me butting in w/ my opinion*” Question about Geno’s new diet after 18-19 season. “He never drinks alcohol during season. He doesn’t eat potatoes anymore. It’s very hard to cook him a soup w/o any potatoes in it. No sweet things,22/

no gluten. Now before games, he eats gluten-free pasta.” “Is he very superstitious? Do you try to wean him off some of them?” “No, if it makes him feel comfortable, why would I do that?” She declined to name any of them, bc it’s a personal thing for Geno. “Do you put in any work in Zhenya’s image and style?” “I think so, a bit. His sense of style has become better, his taste in literature.” “Zhenya’s favorite music?” “Russian pop-music mostly.” Question about Geno’s gaming habits. Anna 23/

doesn’t try to control him or tell him not to play, bc for him these computer games are a way to relax. She doesn’t mind. It’s his personal time. He doesn’t have his computer in Miami, so he found another way to spend time – studying with his tutors. Question about Olympics. “Yes, he’d like to win a gold medal with Team Russia, when the time comes.” He doesn’t feel jealous about Datsyuk or Kovalchuk, who have an Olympic gold. “Do you think, Zhenya’s last hockey season before retirement will 24/

be in Magnitogorsk?” “Sure, I don’t see why not. He’s very grateful for everything Metallurg gave him and it would seem logical for him to come back there before retiring.” “What is Zhenya’s biggest motivation right now?” “He’s very self-critical (she means Geno’s words about his skills in 18-19 season). He always has a high bar for himself and je always tries to reach it.” Question about Geno reaching 1000 pts. “It was a very big moment for us and a big win for him. He was very inspired 25/

by it and it gave him a lot of self-confidence.” ‘Was Zhenya mad about not making NHL’s 100 players list?” “I was. I was very angry. But he knows his value and what he’s achieved as a player. But it was very strange for me.” “Who do you think Zhenya wil be after his career ends? And how will your life together change? Will you spend more time in Russia or in US?” “It’s a tough question. I imagine a house by the lake, in Russia, with kids and, later, grandkids. With a big fireplace. I think, 26/

after finishing his career, we’d like to travel a bit. But I don’t know. It’s something you should ask him.”

[autisticstarseed]

👐 Hand washing guide when you have sensory issues 👐

tbh. we shouldve been talking abt this a long time ago for many disabled ppls sake but ive put this post off for like a million years out of pure solidified fear of ableist harassment/kneejerk ignorance and also generalized cringe idiots but now that we got so much covid-19 fear and autistic ppl actually tend to have weaker immune systems than most people lets jump the shark;;;

i have autism and i physically struggle with washing my hands as often as i want to, having wet hands, drying them, the temperature difference, bad soap smells/textures, etc. are all genuinely painful. the good news is that ive dealt with water aversion shit since birth (its a common sensory issue), so ive had time to figure out alternatives and coping skills that still help reduce risk of disease and spreading it in ways that i can personally manage. (ie. not lazy or selfish or gross. genuinely putting more effort into this every day task than most other people would even think about. just disability lads) so heres the guide i have to offer if you’re in a similar boat, with some keypoints about hand hygiene and tips addressing the most common sensory struggles ive noticed with it;;;

1. hand sanitizer

i love hand sanitizer, i can get it in almost any scent i want and it dries down very very fast. the problem is; hand washing and hand sanitizer do different things. it only kills certain types of germs. which is all fine and dandy, but because of this, using only hand sanitizer wont actually keep you from catching or spreading many illnesses. so what its good for is times you cant wash your hands (out in public, sensory overload, no spoons, etc), thats fine, but it should not replace all hand washing if at all possible. it is supposedly effective to covid-19, but so little is currently known that it should not be considered your go to for this, and the only unanimous statement straight from the CDC is that hand washing works best at preventing its spread.

temperature - if you have trouble with it being too cold, conveniently keeping it in your pocket or closely against your body in some way warms it up and makes it much more comfortable. 

scent - they come in almost any scent you can imagine, but if you have trouble with strong scents, there are ‘scentless hand sanitizers’. they usually have a faint chemical smell, so if there are any testers available, you should check to make sure it can work for you before you buy it.

texture - if gel doesnt cut it, they also make foamy hand sanitizers and liquid sprays, but theyre harder to find and might be a little more pricey.

and remember; always buy hand sanitizer that says it contains AT LEAST 60% alcohol, the higher alcohol content the better, but try to keep track of how high it is and how much you apply it so you dont dry your skin out. and right now price gouging is pretty bad, so dont be surprised if you cant find any for a while, and dont buy any small bottle that costs over a couple dollars, its a rip off.

2. hand washing 

so what does hand washing do thats better than sanitizer??? soap and water lift up the dirt and oils that are carrying the germs and actually wash them off, and not only that, it also gets rid of all the things sanitizer cant, such as dust/dirt, spores, chemicals, and the previously mentioned viruses that are harder to kill. ik to an outside perspective it might not seem that hard, but obviously when you have autism and these tasks are split down into bigger ordeals and sensory nightmares, it can feel impossible. 

soap - there are so many different kinds of soap! scentless soaps exist, and they very rarely have any lingering chemical smell! theres also soap for sensitive skin, and baby soap also works well for that issue. bar soaps can come in all different shapes and sizes, with many different ingredients and additives to choose from (independent soap makers are an amazing source for customized soap btw), and liquid soaps can be pure gel, frothy, mousse-y or even have tiny exfoliating or moisturizing beads in them if thats a sensory experience you enjoy. this is my number one rec for people struggling with hand washing bc of sensory issues;;; mix up the soap. finding one that gives you an okay or even a GOOD sensory experience can completely turn around an otherwise meltdown inducing task

temperature - this is the one thats always been hardest for me. cold water straight up hurts me, and our plumbing is Terrible, so the trick i have for slow pipes is to run the hot water on high as Soon as i get into the bathroom. leave it going and by the time you’re done there should be at least lukewarm water. if this still takes too long for you, try out the various sinks in your house, usually one is able to get hot water faster than the rest (for me its the kitchen sink) and that can become a designated station for you if need be.

texture - some ppl just hate water. if thats the case, it rly doesnt change much abt the process if you use less water, ie work the soap into a lather, and then only use as much as you need to rinse it off. you dont have to keep your hands under the whole time, the soap clings to the dirt, the water takes it off all together, as long as you scrub well and rinse till you see no suds, you’re good 

If it really comes down to it, a washcloth with water+soap, a disinfecting wipe, or even literally just a rinse with plain ol water is better than nothing, but the stream of water and act of rubbing the soap in is the most effective combo against disease. soap/disinfectant wipes and hand sanitizers are your second best option. if theres a time in your life where an issue is so disabling for you that you truly cant keep any of this up, rly the most important thing is to limit your direct physical contact with your face and commonly used objects as MUCH as possible until you can figure smth out. (you kno those old ladies that grab a wipe and open the doorknob with it between their hand and the knob? become that old lady) and if push comes to shove, if a safe and accepting therapy setting is something accessible to you, hygiene struggles are actually something many mental health professionals understand Very well and can help you cope with personally and directly, without shame.

3. hand drying

this is also. my personal hell. and what most people say is the hardest part of the sensory experience. but ya cant just walk around with wet hands right

towels - the obvious choice for most, but to me they actually dont dry enough. i always end up damp and with lint stuck to me. this kills the man. but hand towels do have some variety to them, you can find em with really long fibers or really short/flat, really fuzzy or really stiff, etc. sounds silly but its smth a lot of ppl dont think about that can change a lot. you can also try super absorbent towels (yes like a shamwow), and again baby bath towels are also an option if you want something gentle.

paper towels - yeah a little more wasteful and expensive, but imo much more absorbent. theyre also pretty thin so you can get between your fingers (MY BANE), and under your nails if you use a corner. 10/10

blow drying - ik this is the kind of shit you only see in like movie theaters and malls and they are definitely LOUD AS SHIT, but if you happen to have the money, and struggle more with Textures than Noise, ie a stream of warm air seems worth the sound, you Can actually find a small basic one of these items for your own home. 

4. public restrooms

everybody hates em!!! but you can make em more tolerable;;;

soap - bring your own! little travel soaps you can keep in your bag are a godsend for ppl with sensory issues, sensitive skin/allergies, and if you just prefer not sharing soap.

temperature - most public places i notice actually do get hot water pretty fast (like,,, too fast,,, like,,, it bur ns me) so if there are no faucets and its too hot or too cold, once again you can try different sinks and one might be more comfortable. if there are faucets i recommend grabbing a paper towel to turn it off, so you dont have to touch it again with your clean hands.

sound - WHY R AUTOMTIC FLUSH TOILETS SO FUCKEN LOUDD..... honestly if you have noise cancelling earmuffs or earplugs or w/e pop em in. if you dont have any of that i just literally plug my ears with my fingers when i stand up. if you struggle with the sound of the blow dryers, they almost always have paper towels as well, but its a great idea to carry something like that around in your bag with you just in case. if its really packed and people chattering is getting to you, sometimes the ‘family’ bathrooms are actually smaller and less full. if its bad enough and you feel comfortable asking, an employee might be able to direct you to a single stall bathroom or at least a different one than that.

and though its convenient, try not to use your sleeve to touch things like doorknobs, toilet handles, etc. instead use something disposable like a paper towel or wipe, bc the germs will simply transfer to your sleeve and still risk infecting you. 

5. schedule

the number one suggestion is to wash your hands literally as often as possible during a time like this but like. even for allistic/nt/abled/ ppl thats just not always an attainable schedule so the Best times to wash your hands are;;;

after using the bathroom - the most important time and generally the easiest to get used to. its smth you have to do multiple times a day that already has a schedule, and if you were to forget or go into sensory overload its usually immediately accessible as soon as you can. as i mentioned earlier, if you need help remembering, you can turn the water on when you first get in and leave it going.

the doctors - ANY KIND of health facility should be avoided right now unless really necessary, places where sick people would frequent is the quickest way to get sick but like. ya rly cant help it sometimes right. you cant stop dealing with your own illnesses just bc theres another one floating around. so, this is time to go apeshit on the handwashing. if your health issue involves coughing and sneezing, ask for a face mask. bring a scarf in case they dont have any, its not as great but better than nothing. otherwise, you honestly dont need it, face masks are more for these people bc they keep germs in better than out. whether you’re worried abt getting sick or infecting others, this is a time to use hand sanitizer, avoid physical contact like shaking hands [autistic cheering], and when you first arrive and right before you go to leave are the most important times to remember to wash your hands. 

preparing food - not as commonly spoken about, but also easy to work into a schedule. i personally dont care unless its food for somebody else or if im going to be putting my hands on it a lot, but if thats the case, a lot of the time thats produce you already want to wash in the sink, so you can kill two birds with one stone there. dont just get the germs off your own hands, get em off the fruits and veggies before you eat em. carpool

after grocery shopping - not very common. most ppl just slap some sanitizer/a wipe on there or dont think abt it at all, but if you just got home from walmart thats a great time to wash. you just touched a bunch of items other people touched, including the cart, money/credit cards, and all the products people will pick up and put back, so its prime germ time babey. But again, sanitizer or a wipe will help if its all you can manage after a trip out like that.

before self care - also uncommon. ppl always say ‘dont touch your face’ and ‘apply this product with clean hands’, and what they mean is that one of the fastest ways germs get into your system is through your mouth, nose, eyes and ears. if you’re simply washing your face theres not as much concern, but applying a mask, moisturizer, makeup, etc. should all be done after a gentle rinse of your hands (and face). very hard to get into the schedule of, but if you consider it a Part of your ‘self care’ or use a special fun cleanser, it can stick a little easier.

6. stim items

STIM ITEMS!! if you have stim items, its a good idea to clean them regularly, but even moreso during an outbreak like this.

rubber/plastic - if it goes in your mouth, hot water (not hot enough to melt!) and dish soap, if it doesnt, look up how to safely make a diluted bleach solution.

silicone - silicone is usually dish washer safe.

fabric - if its light, add bleach to the washing machine, if its colored, you can use white vinegar or hydrogen peroxide which are less likely to discolor any dyes. lysol detergent is also super great. small items you’re worried about losing, or items with details/loose parts, you can usually wash inside of a sealed pillow case. 

‘squishies’ - for ‘mochi’ squishies aka the rubbery ones, soap and water + some dusted baby powder or corn starch (optional) to keep it from grabbing lint for a while. for foam squishies, they can rarely be deep cleaned without the risk of growing mold or taking paint off, but a disinfecting wipe every now and then should keep it clean for a while.

slime - cant be disinfected, sorry. also a breeding ground for mold if you arent careful, so its always best to cycle through these quickly.

technology - cant really be completely sterilized, but there are many places to get sprays and cleaning wipes for the devices you use that can at least keep the areas your hands frequently touch a little cleaner.

BUT of course if your item comes with instructions on how to wash it, always follow that instead. this is just a general idea.

and as a final note;;; disabled ppl should not feel guilty or dirty for struggling with this. like. man idc abt ur cringe feels or your ignorant blame or your lack of understanding/sympathy for what goes into these tasks for us. if u dont wanna get our struggles and sensitivities when we’re working twice as hard on functioning tasks which personal ease you take for granted, thats on you. @ disabled people if you struggle with maintaining the same standard of hygiene as nts you arent gross or bad fucking person, you’re disabled and by definition that means your level of functioning will be different, and you deserve sympathy. its just that germs dont discriminate, they wanna cause problems for everybody involved (especially you!!!), so Anything you can manage is Great and if anything from this post can help make it a little easier for people in any way, i feel its absolutely necessary to talk about with respect and dignity. people with autism/adhd/sensory processing disorder/similar neurodivergencies/literally anybody else this could benefit, pls feel free to add on any tips you might have or send me questions. let disabled ppl help disabled ppl do our personal bests

[nettheworldonfire]

If the Genes Fit, Test Them.

It’s been 2 weeks since I’ve last posted.  Somewhere between the drama and chaos that was diagnosis, first treatment, and weaning my 6.5 month old external tumor, and now the end of life as we know it (also known as COVID-19), I just didn’t have much to say, or much time to say it.

So while Charlie is sleeping, and Olive is screaming at me in her typical zombie-esque growl and tossing each toy I give to her on the ground, repeatedly, I’ll painstakingly stop and start this post, until I’ve given a short update about all that has been going on.

Genetic Counseling Update: On Wednesday I spoke to a genetics counselor over the phone.  I was supposed to go in, but the appointment was modified due to COVID-19 and we took care of everything via phone.  The counselor’s name was Stephanie and she was extremely kind and informative.  She called me promptly at 8 am and the call lasted almost exactly one hour, like she said it would.  (I kind of wish all appointments were this easy.)  They are sending me out a saliva swab kit to test my DNA.  The kit should arrive within a week, I’ll send it back out, and I should have those results within a month.  Easy peasy.

Stephanie said that about 10% of neuroendocrine tumor patients are genetically predisposed to getting cancer.  While only about 1 of those percents are people with my type of neuroendocrine tumors, due to my family history, they think it is smart to check.  On my mother’s side, I have a second cousin who also has pancreatic neuroendocrine tumors and liver metastasis (she recently started Lanreotide injections, too).  Additionally, my mother’s father had a neuroendocrine tumor on his spine, near the nape of his neck, which they assumed was was not cancerous, even though it was fatal. He was diagnosed in the 70s though, and then Neuroendocrine tumors were thought to not be cancerous because of how slow-growing they are.  When I was diagnosed 8 years ago, we tried to access his records from his more recent Jefferson hospital stays/surgeries (he passed away in the early 2000s) but we were not able to obtain them.  Anyway - that is enough to make this a fishy scenario. And in the words of the counselor, “reasonable to think there is an underlying genetic predisposition.”

While the most important reason for genetic testing right now is to find out if my immediate family may also be at risk for these type of tumors, it can also be helpful to know what treatments may be beneficial.  If an underlying genetic cause is found, it would trigger two things - testing for my mother and brothers, and testing for my children.  A genetic predisposition has a 50/50 chance of being passed to your children, so therefore, if I have it (presumably from my mother, since it’s on that side of the family) it would typically indicate that she does and my brothers and children have a 50/50 chance of having it, too.  There is yet a third consideration though - which is that it is a NEW genetic predisposition started with ME.  Apparently, there are 10 new genes in each baby, that did not come from either mother or father, meaning that issues like these can start with anyone, at any point (crazy, huh?).  

They told us that this testing, if not covered by insurance, costs $250 per person - something I think is worth it, in the long run.  I don’t think they would test my children now, but they said they would fairly early - and if they also have the gene - they would be followed/scanned regularly to ensure there are no tumors.  Definitely not the sort of thing you want to have passed down to the kids (I think they would prefer a family fortune, or a shorehouse) - so fingers crossed that I don’t have this gene and it’s all just a horribly shitty coincidence.  

Adventures of Olive in Formula-land Update:   My (adorable) hungry, hungry hippo is now taking 25-30 ounce of formula daily, from a regular medela bottle with a disposable enfamil nipple (go figure), like a freaking champion.  This girl can eat.  She is so proud of her bottle-loving self, that she gets up three or four times a night to show me how much she loves her fancy formula.  Luckily, she is four months away from regular old milk (or an abundance of yogurt and cheese, the route Charlie opted for) and we can stop spending $30 a week on her elitist beverage of choice.  I joke, but really I am thrilled that the horror of weaning is over.  That nearly killed me.  And in more personal news, I didn’t even have to pump that long, didn’t really get sore, and have pretty much stopped producing much at all - so that is a literal relief.

University Update:  After learning I was locked into paying for the course I had started a few days before my diagnosis, I was annoyed and anxious about what was the best course of action.  I decided that it would be better, for the purposes of my sabbatical (and needing to complete a certain amount of my program to meet the requirements of my district and not owe them back what I’ve earned this year) to struggle through the course, versus withdrawing, if we were paying for it either way.  So that’s what I did.  But, but rather than struggle through the course, I just kind of didn’t do anything.   I felt overwhelmed even thinking about it, so it was easier not to.  And I didn’t.  This past week, as week 8 (the final week) of my course began, I discussed my options for salvaging the course, so that I might at least “pass” with my chairperson.  She was accommodating and understanding, and now with even more craziness in the world, sympathetic.  She and I discussed a minimalist approach to completing back-work and hitting the milestones I missed in the last few weeks, so that I could still get some late credit.  I felt like so many of my students, basically asking, “What is the very least amount of work I can do and still pass your class?”  I suppose what goes around, comes around?

I started working my dissertation proposal again Thursday and will have more to work on this weekend - but should be able to pull off a small miracle.  I did send a crass email to the finance department and will likely be taking a hiatus from the program, as I am not sure where to go from here.  While I want to finish this dissertation and accomplish what I set out to -- I also just don’t give an eff at this point, and may want to spend the tiny bits of spare time I have doing things that make me genuinely happy.  After all, you only live (or die) once, and If the last two months say anything about life, well - that’s enough to scare anyone into treating each day as your last.

Side-effects Update: After my first injection, I felt okay for awhile, then got extremely tired for about two hours.  Later that night, I was quite nauseous and vomited a couple times.  By the next day, I felt a little wonky and sick - but overall, not terrible (more like a bad hangover).  Within two or three days, I think I felt normal again (what is normal anyway?).  Even now, almost three weeks later, I can still feel a bulbous spot in my upper butt cheek and from time to time it is sore.  I can definitely see why they recommend doing the injection on alternate sides.  The specialty pharmacy called me this week and everything is set up for my shot to arrive at Dr. Rose’s office sometime next week. He should be back to work on Monday and I am hoping he calls me with next steps/ideas.  The only thing I know for sure is that I need to get blood work next week and I am not looking forward to sitting at Labcorp and germ swapping with my Abington area neighbors, but I will be careful.

Anxiety Update: I started a daily dose of 5 mg of Lexapro about the same time as I started the Lanreotide - I think I have been on it for 25 days maybe.  I can’t really tell if I feel a difference because everything has calmed down a bit, and we have a plan of action to tackle this cancer and I am not actively writing my dissertation - or if the medication is working?  Hard to say.  I do feel better(ish), minus the impending shitstorm that is COVID-19 lurking around every corner.  My doctor, however, didn’t think I was any more susceptible than a normal 37 year old, so that was the good news.  The bad news is, that if they start making triage decisions based on health - metastatic cancer is one of the things that means you don’t get a ventilator - so I better watch my back (and wash my hands, and not touch my face, and all that jazz).  We’re socially distanced though, and other than my appointments, we will remain that way until things are less deathy out there.

Options Update: I am assuming that the whole COVID-19 thing has changed his thoughts on doing the embolization in April, and since Dr. Teitelbaum felt it was something we could hold off on, I think that may be the route we go now.  I don’t even know if they would do it, or if it would be considered elective.  Not that anyone would elect to go through this, but you know.  Hoping I will have a conversation with him on Monday to sort this all out.  Til then...

* Dark side: Quarantine, still, and maybe forever.

* Bright side: A lull in posts means a lull in “activity” means a lull in bad news - I’ll take it! * Next steps:

3/30/20 - Conversation with Dr. Rose about the plan of action

4/1/20 - 10:00 a.m. - Bloodwork at Labcorp

4/6/20 (tentatively) - next Lanreotide injection (I forgot to write down the time!)

* Sciencey GIF: