the order of the spoony one

Autistic Flirting: You accommodate my stims in public.

You know if I wear headphones, I’m not ignoring you, and if I can’t stand still, you don’t mind if I stand with you and vibrate.

You help bury me in blankets when I’m really upset, and you hold me tightly and tell me how much you love me.

You wait while I try to find the right words in the right order, and you don’t make fun of me if I can’t.

You don’t get angry or disappointed in me when my executive functioning epically fails and things that should get done, don’t.

You stick around during my meltdowns, and you do your best to help me recover afterwards.

You remind me to take my meds, to eat, to drink enough, to make sure I’m taking care of myself, without treating me like a child.

You make the good moments better, and the bad moments more bearable.  

Autistic/Neurodiversity Community Pins

The pins have arrived! They turned out wonderfully. 

For those who pre-ordered the pins all orders will be shipped by Thursday March 2nd. 

For those wishing to buy one of your own you can find them here:

Happy Flappy Pin - $6.00 each
1.5 inch Owl Pin with the text “Happy Flappy”

Neurodiversity Pin - $6.00 each
1.25 inch Neurodiversity Symbol Pin

Spoonie Pride Pin - $6.50 each
1.75 inch Spoon shaped pin with the text “Spoonie”

if you actually think ableism doesnt exist and is just some new tumblr buzzword, you seriously gotta get your head out of your ass and open your eyes.

the simple fact that, despite how awful ableism has been in the past, and how rampant and horrible it is today, and even after so many awful things that happen because of the constant ableism, there are still people who choose to believe it doesnt exist, who think the disabled dont go through as much as another group, or anything at all, shows how deeply embedded ableism is in this world.

why do you think you dont hear about this in history books? or in rallies? why do you think you need to literally search for stories about ableism? Because ableism is so bad that no one believes it exists so they dont include it in anything, even social justice movements that claim to fight for equality and be better than “the privileged” have a very VERY long and toxic history of ableism, a history that is still continued today, because no one calls out ableism in anything, because its so bad we dont think it exists.

so if you actually think ableism doesnt exist, congrats, youre proving that it does, because in order to believe such a serious form of discrimination is just some dorky internet trend made up by whiny teens, you have to ignore and erase every form of ableism ever.

in short, you have to be ableist to think ableism doesnt exist.

Update

The new urogynocologist was awesome! She listened to me really well and asked a lot of questions and did a thorough exam. None of the urologists I saw came close to this.

She thinks it’s interstitial cystitis or another pelvic floor dysfunction condition. I have some thickness, pain, and overly tense muscles in my pelvic floor/vagina. So I got some information the lifestyle changes for i.c. (many of which I already do thanks to the spoonie community). She is also switching me to a daily bladder spasm med rather than as needed when I already have the spasm. Especially since the med I was on causes retention…which is a huge bladder problem of mine. Idk what planet that last urologist was on.

She also ordered physical therapy to help it. The funny thing is she was going on about how awesome this one physical therapist is for pelvic floor pt….and it’s one of the pts I’ve been seeing for my shoulder! So I get to go see her more and the place is only 5 minutes from my parents house. It works out so well.

Overall I’m extremely happy with this doctor and feeling a lot better about my bladder and pelvic problems. I see the doctor again in 3 months.

Shoutout to the spoonies who are struggling to make ends meet.

To the disabled people who have to choose which medical treatments to pursue based on cost.

To the spoonies who are choosing between food and necessary medical care.

To the disabled people who have can’t get necessary medical treatment because of cost.

To the disabled who are constantly worried about how they are going to make things work.

To the spoonies who go to work every day because they must in order to support themselves but can barely function by the time the workday is over.

It’s messed up that we live in a country where medical treatment is so expensive. It’s terrible that you must make the choices you do. 

I see your strength and your bravery. I see how hard you are trying. 

It is my hope that one day soon it will all get easier for you. I hope that you find a way to afford what you need. 

Medication Safety-Net #30

I know many spoonies sometimes forget to order their next prescription until it’s too late. I often don’t realise I’m low on tablets until I’m taking the last one

This spoonie hack is simple. You take a weeks worth of each medication you need and put it all in a box or drawer together. It can be more or less than a week if you like. Now whenever you ‘run out’ of tablets, you can order more, but you don’t need to panic as you can use this backup supply of tablets until the new ones arrive. When you have your new prescription, replace any used tablets for next time. Make sure your tablets are in date if you haven’t needed them for a while (Thanks to creativeonica for reminding me of this). Base how long your backup will last you on how long it typically takes to order and recieve your tablets.

This helps me the most with the tablets that I take 4 or 8 of a day. Because it will look like I have plenty of them, when really I only have a day or two left! Now I don’t need to worry about making that mistake all the time. 

This could be a good idea if you are forgetful, or like me you have tablets that you take a bunch of a day, so it’s harder to tell when you’re going to run out.

Dating Stiles would include

(I’m going to be adding more to this, but for now enjoy! Requests are open to ‘dating ___ would include’)

Originally posted by gold-motel

Dating: Scott McCall

  • The first time Stiles met you, he had to do a literal double take because you were just THAT beautiful.
  • It wasn’t like a ‘who ask out who’ situation, your relationship just sort of happened
  • Your first kiss was awkward because he bent down to kiss you and you looked up too fast making him kiss your chin
  • Redoing your first kiss and having a better, more amazing second kiss
  • Stiles thinking you are absolutely breathtaking, and he doesn’t deserve you whatsoever
  • “Stiles, please stop looking at me like that?”
  • “Like what?”
  • “Like I’m the last slice of pizza and you’re starving.
  • “(Y/N), you’re my slice of pizza.”
  • Assuring Stiles that he deserves you
  • Bickering over practically anything like an old married couple
  • “Alright babe, let’s just sit here and WAIT for him to come kill us.”
  • “Well I’ll just think real hard and maybe an idea will pop in my head.”
  • “Not like I’m gushing blood here at all. Let’s just chill.”
  • “So you ate the last dumpling?”
  • “Yup”
  • “Do you hate me or something?”
  • Making homemade dinner for both Stiles and his Dad
  • His dad loves the fact that you keep Stiles sane… sort of
  • You, Stiles and Scott being like the ultimate friendship
  • THE SARCASM IS REAL BETWEEN THE TWO OF YOU
  • When Stiles has a panic attack, you’re the only one who can calm him down
  • “Listen to me Stiles, calm down. I’m right here, baby it’s okay.”
  • Putting your hands on his cheeks and making him look you in the eyes in order to sooth him
  • Giving each other absolutely absurd pet names sarcastically but eventually growing to like it
  • “Sugar plum, what should we grab for dinner?”
  • “Shmookie, you got a little dirt on your face.”
  • Stiles getting jealous ALL THE TIME
  • Example: When you tutored Liam in math, Stiles’ refused to leave your side and watched Liam’s every movement. He also almost freaked out when Liam got too close
  • “Keep your dirty little puppy paws off my girlfriend.”
  • Stiles is weirdly competitive, doesn’t matter if you two play game boards, video games, hide and go seek, if he loses he will pout and pout and whine
  • “But (Y/N), you cheated. That’s not fair.”
  • “Babe, we were playing Monopoly.”
  • “JUST NOT FAIR.”
  • Getting into your first fight because you were frightfully insecure because of  Lydia, you feared even if he was with you now, he’d still leave you
  • Stiles arguing back that his feelings for Lydia were long in the past and that he loves YOU now
  • “God, (Y/N), can’t you see that I love you now?”
  • “You love me?”
  • “I love you.”
  • Going to every one of his games even if he doesn’t play
  • But also being the first person he told when he was on the field, with a huge smile and a kiss
  • In a sea of people at games, it’s easiest to spot you because you’re the one wearing all face paint, Stiles’ jersey and a huge 24 painted on your cheek
  • *SCREAMS* “HE’S PLAYING. THAT’S HIM HE’S PLAYING LACROSSE. RUN STILES DEAR GOD RUN”
  • Stiles always flailing his arms when explaining something and occasionally smacking you in the face
  • “Sorry (Y/N)”
  • Spending so many nights doing research, it’s not uncommon for the Sheriff to find both of you passed out. You surrounded by papers on Stiles’ bed and Stiles’ face stuck to his desk
  • “I can’t stand you.”
  • “Whats that? (Y/N), I think you said ‘I love you’ very wrong.”
  • Ditching class so many times that there are two pictures of your both faces in all of your classes saying, ‘Do NOT LET THEM LEAVE CLASS. EVER.’
  • Always protecting one another
  • Your fights either go one or two ways
  • One: From all the screaming and anger, you start crying making Stiles’ feel extremely guilty. So you both sit and cuddle all anger set aside, nothing is worse than hurting each other
  • Two: One of you gets so unbelievably turned on, that it leads to pushing into walls and make out sessions and well… ;)
  • Wearing his flannels
  • Stiles loves seeing you in his clothes
  • “Okay, you can have these back now. They don’t smell like you anymore.”
  • Sleeping in Stiles’ bed late into the morning
  • Always being his first call when he has a nightmare because you are the only person who can calm him
  • Switching and fighting over who gets to be little spoon
  • “You got to be little spoon last night!”
  • “Another reason why I should be the spoonIE not the spoonER!”
  • “Sti, that doesn’t make sense.”
  • “I.. I KNOW WHAT I SAID.”
  • Catching each other’s eyes when someone says something ridiculously stupid and rolling your eyes at the same time
  • Having so many private jokes that no one understands and aren’t even funny but makes the two of you crack up
  • Always dragging Scott (much to his protest) into fights in order to gain leverage
  • “Scott. Please tell my WRONG boyfriend, that he’s so unbelievably wrong it hurts me.”
  • “Scott, please tell my girlfriend that even though she’s angry she’s also cute. BUT ALSO EXTREMELY FALSE.”
  • Scott groans and says “Guys, please I hate when you do this.”
  • Turning to Scott at the same time and yelling “SCOTT.”
  • Movie marathons: where every time you watch a film you decide whose which character
  • “Stiles, you’re definitely Ron.”
  • “Yeah, you’re probably… Dobby.”
  • “DOBBY? NOT HERMIONE?”
  • Seeing each other at the worst each other’s worst, but still loving the crap out of one another
  • “Stiles, you’ve seen me with my pants down, running to grab popcorn then spilling it over myself. How are you even still with me?”
  • “Well, babe you’ve seen me with snot dripping down my face that made it look like I was a walrus. Also babe, you without pants=amazing.”
  • “Stiles!”
  • Hardcore make out sessions in his car
  • Stiles’ hand always finds a place on your thigh when you drive
  • Walking down the hallway, you are either holding hands or his arm is over your shoulders; giving each other a kiss before class
  • Stiles’ is in literal awe all the time because you are his, and he is yours
  • Never. Ever. Forgetting Stiles
2

Lost Hospital Glam

So I made these at my first appointment back in February with the woman who’s now my PCP. At the time, I was seeing a horrible, ableist PCP, and through my own research got myself a referral for “joint stuff”. Doctor Ireton is a family practice doctor with an exclusive client base of patients who all have Ehlers-Danlos or related conditions {namely MCAD and POTS}.

Before my first appointment, I’d heard that she has EDS herself, and works part time for the hospital she works out of - something they don’t let their doctors do, but they do it to accommodate her, along with the unusual setup of not having to treat “random rich old coffer filler X”. So it wasn’t unusual when the day before my appointment I got a call asking me to come in early, at 11am instead of 11:45, because she needed to make a meeting at 12:30 and then go home. When I showed up, the staff told me I’d have my intake split into two appointments, and that I wouldn’t get a physical exam that day, so she could make her meeting.

My appointment lasted three and a half hours. The last two of which were unchargeable to my insurance, but I found out her office never bills low income patients for those times. Once she read my chart and took some history, she spent a very long time time talking to me about my symptoms and experiences. She validated a lot of things as not being “normal” that I had never even thought of as symptoms.
She listened to my concerns and fears that even if I ever got a real diagnosis like EDS, that I would wonder if it was somehow wrong, because I didn’t know how to describe symptoms. Or that I would continue undiagnosed and that doctors would never investigate all the “quirks” of my body. Any number of fears.

I’ve waited a very long time to post this because I’ve wanted to keep things chronological - to start back at the beginning of my saved drafts and work forward. But yesterday I was diagnosed with Obsessive Compulsive Disorder. It’s shed some light on detrimental behaviors, one of them being this way I procrastinate when I feel like I have to do things in order, when it really doesn’t matter much.

eta: made this post a month and a half ago, but never finished the last sentence. So the OCD isn’t brand spanking new, but I’m still wrapping my head around it, little by little.
Lemme tell you guys about some fuckery...

So mid last month I was admitted to MUSC in a pretty bad flare. While I was there, as they normally do, they did a ton of tests, mostly blood tests. There was talk of doing an antibody test, I informed them my previous GI did one not even two months ago, to pull his results. So they did, my antibodies were a bit on the high side, but I guess not enough to pull me off my meds. Well, someone misconstrued the order to NOT DO ANOTHER TEST. They did one. No one knows who did it or where the results were sent initially.

So I have an appointment today with my GI (which was my previous GI at MUSC, long story, I stopped seeing him because insurance and because when I told my new GI I needed to be admitted and needed fluids he pretty much told me he had no power over that and to just go to my PCP or ER.) Doctor looks me in the eye, asks, “So how have you been feeing?” And I respond with an “Eh” and a shrug. He goes, “Don’t lie, you feel like shit, and I know why” He proceeds to explain to me what happened with the test, and between Dr Snyder’s test and theirs I had developed antibodies to the Humira. This whole time I’ve been on two shots every week…and I’ve had antibodies. Lemme tell you what’s happened like the last month…

A kidney infection. My eyeball decided to swell up and give me lazy eye to the point where my husband told me I looked like Forrest Whitaker…and proceeded to call me that for two days while said eye was swollen to hell and back. I had a weird rash/hive on my head. A large lump in my neck that turned out to be a swollen gland. My whole body hurt and it felt like something was protruding from my rib cage at one point and I legit thought I was gonna die. I ran a 101.1 fever a couple days. I had NO EXPLANATIONS FOR ANYTHING. Even went to PCP when gland swelling, fever, body hurt thing happened because I thought I had the fucking flu…he had no answers for me.

So GI tells me I need to come off the humira, because being on it with antibodies can cause bad things. He does not go into detail, but I can chalk up everything to THAT. Puts me on prednisone, wants to switch me to entyvio, but at a higher dose…here’s the kicker, i don’t even know when my appointment for that infusion will be. He told me my appointment for July 5th is to check to make sure I don’t need to be admitted, so it will clearly be AFTER that. I’m gonna get worse…and I’m supposed to go back to work Monday. How do you just tell them “I’m not any better, but here I am, and it’s all gonna go to shit from here!” Also, DISNEY. Like, I cannot deal with being sick for Disney because I want it so bad.

But here’s another kicker, after doing research, I’m almost 100% all these bad health things from antibodies to humira, were humira induced lupus…which can take 6-8 weeks to disappear. Doctor just said bad things, and never specified, but he did put me on prednisone, which is supposed to suppress all this mess. So now I’m praying for that to kick in and for everything to be fine…but I’m terrified. 😩

I’m also thankful that someone fucked up and did the test instead, because I wouldn’t have known otherwise. I also wanna know…how long did my GI know the results to this test?!

About Me

i am like the death card in tarot, signaling change. i am never the same. i am infinite. i strive toward patience, the temperance card. i am learning to embrace everything, myself included. i get lost, but i have found my way every time before, but i forget.

logos is the word, the sword, and truth. chaos is balancing order and disorder, dynamic equilibrium. together they are the interconnectedness of everything, a transparent web in the womb of the universe, and each one of us our own universes experiencing this one in a co-creative process.

About Me

she/her or they/them (idc) 24 FL bi polyamorous (i have a bf<3) and i’m healing (spoonie/recovering from chronic mental illness)

here you can find a mix of snakes, flowers, tea, quotes, advice i like, otherwise giving my two cents, cats, psychedelics, ramblings, my spiritual beliefs and practices

my spiritual beliefs are quite complicated, rather unique, and changing lately; ask me for more information

please feel free to drop by to talk about anything or ask me anything

[Image description: an Amazon Dash button with the Tide detergent logo, and the logo for the Amazon Dash button.]

Amazon Dash Button

If you use Amazon much, you’ve probably run across ads for these little things–but past the initial “oh god, not another piece of unnecessary tech” reaction, have you considered how useful it could be?

At first, the variety and quality of brands was fairly low, so this didn’t really hit our radar. However, Amazon has expanded and is now carrying a whole slew of brands (107 in all, here in the States!), including more eco-conscious ones that intersect with spoonie allergy and health needs.

Here’s how it works: set up the button, put it near the product it’s coded for, and then press it when you’re running low. This creates an instant order for that product, and it’s on its way to your home! If you’re frequently brainfogged, low on executive function, or just need a step or two taken out of your “I’m out of something” process, this is a fantastic solution.

Worried about cost? To get a button you pay $4.99, and then get a credit of $4.99 after your first press. So, each button ends up being free. Shipping is something to take into consideration, but is probably worth it for the convenience. We super recommend Amazon Prime if you can afford the up-front cost–or ask a family member with Prime to share their free shipping (yep, that’s a thing you can do)!

Some might call these buttons lazy, but we know the true value of accidental accessibility 💜

  • I had a coworker of mine ask me to try and describe how treatment for lupus made one feel.
  • Me: Okay. Imagine Superman got sick. So sick that he needed to be exposed to small doses of kryptonite in order to gain back any semblance of his life.
  • Coworker: ...but kryptonite is bad for Superman?
  • Me: Exactly. But it's the only way for him to still get up and save the world.
  • Coworker: That's really shitty, dude.
  • Me: You don't have to tell Superman that. He knows.

anonymous asked:

what are some of your favorite self-help blogs?

Ah these are always the hardest questions because I’d hate to leave anyone out and it’s so hard to remember everyone! But here are a few good ones… I’m not really sure what type of self help you are looking for so I’ll just give a random group I like to reblog from, in no order whatsoever 

Here are some that just have a good vibe- not necessarily long form advice, but lots of small positive affirmations that help me to see on my dash all the time & remind me to follow the advice I already know. I follow a ton of amazing blogs like this, so this is by no means a comprehensive list but here goes:

4

hi everybody!! i hope you’re all doing well!! 🌺

i was really nervous to post this but i really wanted to share with you guys how far i’ve been able to come. the photos on the right are of me at my lowest point, emaciated and in the hospital six months ago (feat a lovely therapy dog) and the photos on the right are of me today. 

last october i was hospitalized because i was pretty much unable to eat anything due to my gi conditions, i was vomiting, i couldn’t sleep, my hair was falling out, i could barely walk, I was in constant pain, and i had lost a dangerous amount of weight. i was 89 pounds and honestly felt worse than I ever had before. i missed months of school, and was forced to partially drop out, and had a complete emotional breakdown.

after being on an nj feeding tube for 4 months, going on and off a dozen different medications in order to find ones that work for me, and finding a great team of doctors, I am finally at a healthy weight that I have been able to maintain without a feeding tube and i am in significantly less pain! im still struggling a lot but for the first time in a very long time i actually feel good about myself.