#spoonies unite!

[mami-chaos]

Normalise mourning the life you may have had before chronic illness took over.

[crazycatsiren]

15 March 2023 is the first International Long COVID Awareness Day.

We will not be left behind and forgotten.

We will be strong together.

We will fight for a future for us.

[adventures-in-ibs]

Just checking in...

Is everyone doing alright? Got your safe foods stocked up, your spoons counted, your imodium extra-strength?

Summer fun foods are around the corner, enjoy everything you can and take care of yourself!

[disability-can-be]

E-stim selfie! What's your treatment of the day?

[ID in alt]

[apologyacceptedcaptainneeda]

Oh I remembered when my vitamin d3 level got tested at the hospital. Yeah. They were like so we would like to see like a level of 60 so we’re putting you on a supplement. I asked my level. And. Oof. I was at 3. Yeahhhhhh. I definitely had a deficiency.

That was three years ago. I still take a very high amount daily. Because if I don’t my level drops significantly.

Oh and they gave me a b12 shot. I was deficient in that too

[everydayesterday]

Rx Hell.

various things that are mentally taxing for me with regard to getting prescriptions filled:

auto-refills that don’t refill because you have no refills left and the pharmacy system doesn’t bother to tell you

“Too soon for refill” 

“This Rx will take a little longer to fill”

“We’ll contact your provider”

provider not responding to pharmacy (either within 3 days, or sometimes *at all*)

controlled substance renewals every 30 days (with provider delay in renewing)

controlled substance narrow pickup window (out-of-town trips require extra planning, coordinating provider authorizing pharmacy to fill early if needed)

controlled substances requiring in-person pickup, rendering mail-order pharmacies unavailable to you

trying to get an Rx transferred to a different pharmacy location because you’re out of town

transferring everything to a new pharmacy hoping desperately that this one will somehow be better

30-day refills instead of 90-day

refill dates being out of sync (requiring multiple visits to pharmacy)

rationing of medication because of the various delays across the board in getting refills approved and filled

pills that need to be split because they don’t come in your exact dose

the pharmacy technicians don’t even have to ask my name when I get to the window; they already have that memorized

the pharmacy magically being able to “run it through one more time” when pressed about why they aren’t able to fill the prescription

“Do you have any questions for the pharmacist?” for the same medications I’ve been taking for years (I think they’re required to ask)

durable medical equipment medical necessity forms (in addition to the Rx; renewed annually)

durable medical equipment authorization (in addition to the Rx and the medical necessity forms)

pharmacy not being able to provide certain DME, while providing others

new medications with new side effects requiring new medications

side effects not feeling important enough to complain to provider about (e.g., skin issues, weight gain)

prescription dose increases where effectiveness has “not been established”

putting $0.14 on your credit card because that’s your share of the Rx cost

“Price without insurance”

remembering to take your medication

remembering that you’ve already taken your medication

filling up your weekly pillboxes

taking pills at 3 different times of day

pills that should be taken on an empty stomach, vs.

pills that should be taken with food, vs.

pills that should not be taken with any other pills

medications that taste disgusting when they touch your tongue

always having your medications with you whenever you want/need to leave your house

printing out your list of medications every time you travel, and theoretically having them in their original containers instead of your weekly pillbox

worrying about drug importation rules when traveling to another country

being chronically ill in the first place.

I’m sure that I’m missing a few things.  Plenty of other folk probably have it a lot worse than this, especially with being able to get prescribed by the doctor and afford their Rx in the first place.  The whole system sucks.  

Edit:  

navigating pharmacy phone menus that don't have a direct button for speaking with the pharmacist (and they only use voice prompts instead of buttons) (because there isn’t a way to do what you need to do on the website)  

every month wrongly thinking "surely, 5 days is enough time for everyone to get things figured out" when setting a calendar reminder to get the Rx refilled  

provider: “We sent that form a month ago; please double-check with the pharmacy” vs. pharmacy: “We haven’t received that form; please double-check with your provider”

Another edit:

I can't get my Rx transferred to another pharmacy location, even though it's the same pharmacy chain and they can see all of my information and confirm my identity, because it's a new prescription even though it's something I've been taking for years and is only considered new because technically I have to receive a "new" script every month instead of it just being considered a renewal because it is a controlled substance (and so I can't pick it up early), and that "new" prescription is specific to one particular pharmacy location.

Another edit:

Although I paid for one insulin pen (and they have this transaction amount - $4.60 - on file), and received one insulin pen the last time I picked up, my insurance company has on file that I picked up eight.  So now the pharmacy has to watch security footage to confirm that I only picked up one.  I was only allowed to pick up one last time around because I was late in picking up my previous order so insurance decided they’d only cover a partial amount (I still don’t understand that part).  I even had to pay out of pocket for an insulin pen so that I’d have enough for summer vacation.  This country is fucked.

[dyslexicdreameroriginal]

Sometimes with chronic pain and illness and with the way the medical and insurence worlds work in the US a person has to become creative. We call the things we do to stay sane and get what we need LIFE HACKS. Yet, these hacks can be as dangerous as our diseases. For me, I’ve found over the years that when sleep won’t come for days or weeks at a time and meds won’t be prescribed or approved or can’t be afforded that sugar, gluten, Mucinex Night Shift, or a combination can help knock me out IF I get them right. If I don’t get them right I end up fatigued over fatigued and in whole body agony. See the sugar and gluten they hurt my body, but because of my intolerance for gluten and my diabetes if I eat an excess of either product they can lead to sleep (yes, stupid and dangerous, but usually effective for an hour or two of sleep). Mucinex Night Shift is the only night time product I’ve found that works to help me sleep and doesn’t leave me with a headache or other issues later, but it’s expensive and just like the sugar and gluten does not always work, but when it does it can give 4-5 hours of sleep if my pain is not at a max. These LIFE HACKS are the things the pain community whispers about. They are what you learn in in person conversations with others because nearly no one posts. Posts are evidence. Post lead to people looking at YOU differently and JUDGING YOU instead of judging THE SYSTEMS that lead to these hacks and decisions.

I don’t deaden my world or help myself by using illegal drugs or alcohol. I might have had I not seen issues with those young and held to my abstinence of such products. I can say I understand better some of the reasons my aunt Peggy got lost in drink for so long. Anything to deaden the pain and sleep. Top that with the disease of addiction and coming out of it like she did towards the end of her life is a feat not many would have achieved.

Here’s your little insight that’s not written about. Do with it what you will.

NOTE: This is after the exercise, calming teas, warm/hot showers or baths, heating pads and blankets, epsom salts, SalonPas, regular medications, meditations, readings, and all else used to try to calm the pain and let the sleep take over.

[roseandbee]

...

[daltongraham]

Fellow spoonies in the US, please comment! (by 8 Sep)

It's confusing--it says to read the regulation first, but I couldn't find anything. Go ahead and comment, just tell them that disabled people of all ages should be allowed to get the damn vaccine.

[mami-chaos]

Remember if you meet someone with BPD/EUPD remember that there are over 200 combinations of symptoms that someone can have to be diagnosed with BPD, so don't treat us all the same, or expect the same symptoms as your own. Thanks for coming to my Tumblr Talk. ✌🏻

[thedisablednaturalist]

Got a pair of knee braces and a TENS unit with my Christmas money (they were also both on sale) I'll let y'all know how they are

[breelandwalker]

Sneak Peek - Spoons In Spades

At a little distance he saw a fire, and beside it there sat three giants, busy with broth and beef. They were so huge that the spoons they used were as large as spades, and their forks as big as hay-forks: with these they lifted whole bucketfuls of broth and great joints of meat out of an enormous pot which was set on the ground between them.

- Niels and the Giants (The Crimson Fairy Book)

[img src]

-----

Intent: To give oneself additional “spoons.”

Ideal Timing: This charm can be made at any time.

Materials:

Spoons

Large Jar

Cotton Balls

Herbs: Hyssop, Rosemary, Thyme, Juniper Berries

When I asked my readers what sort of spells they'd like to see in this second volume of fairytale-inspired spells, one of the most strikingly popular responses was, "Is there a spell to give me more spoons?"

If you're not familiar with the term, "spoons" or spoon theory is a metaphor which describes the reduction in mental and physical energy experienced by people who are disabled or chronically ill, with spoons used as a unit of measurement to represent how energy and motivation must be rationed throughout the day to accomplish necessary tasks. Spoons are only replenished through rest or sleep, so once a person runs out of spoons, that's it for their day. 

The term was coined by Christine Miserandino in her 2003 article "The Spoon Theory," in which she uses dinnerware to demonstrate to a friend how living with invisible chronic illness required careful daily planning and prioritization, and how even with the best intentions and efforts, tasks are often left undone due to a lack of energy or an increase in pain. The term has since been adopted by wide sections of the online community in relation to struggles with disability, chronic illness, or mental health, as a descriptor for daily energy and motivation levels, i.e. "I don't have the spoons for this," or "After a full day at work, I have exactly one spoon left, and I need it for laundry, so going out is off the table."

As someone who regularly battles ADHD, anxiety, executive dysfunction, migraines, and depression, I'm a big fan of spoon theory, largely because it makes those invisible daily struggles, which so many of us have, much easier to visualize and explain. So in honor of all my fellow spoonies, here is a spell to help you gain those critical extra spoons.

For this spell, you'll need a fair-sized jar, some healing herbs, and a bunch of spoons. You can use plastic spoons or metal ones, if you happen to have spare silverware lying around. Use as many or as few spoons as you feel you need. If you need more spoons than can readily be acquired, you might draw or print out pictures or spoons and use those instead.

Place the spoons in the jar with a big handful of cotton balls. Apart from their mundane medical and cosmetic uses, cotton has healing magical properties and also represents the comfort that may feel lacking on low energy or high pain days. If desired, add several pinches of Hyssop, Rosemary, Thyme, and Juniper Berries, or a sachet containing the herbs if you'd rather keep things neat.

Close the jar, give it a big hug, and say:

I bless this jar and spoons And ask for the strength to function; And when I need a helping hand, These extra spoons I'll summon,

Set the jar aside somewhere safe. If desired, you might want to label it. You don't want anyone borrowing your magical spoons for their cereal, after all. When you need an extra boost to help you get through the day, simply open the jar and take out a spoon. You can carry the spoon with you, place it on your altar, or discard it to activate the charm.

Please keep in mind that performing this sort of magic should always be accompanied by appropriate medical and self-care measures. Magic isn't going to cure a chronic illness or permanently alter your brain chemistry. But it can help you cope with the symptoms and give you that all-important push to get yourself through the day. Stay strong, witches!

-from the forthcoming book, The Sisters Grimmoire, Vol. II; © 2021 Bree NicGarran

(If you'd like to check out more fairy-tale spells or any of my other published works, please visit the Willow Wings Witch Shop!)

[21stc3nturyd1gitalb0y]

I saw your patch post, and was wondering what "no spoons" mean? if you don't mind <33

i don’t mind at all! spoon theory is a commonly used way to illustrate chronic illness. spoons act as the unit in the analogy, essentially representing the amount of energy a person has for certain tasks. that’s why you will sometimes hear chronically ill people refer to themselves as “spoonies” or state that they are “out of spoons” as a way to say they don’t have the mental or physical capacity on a particular day.

[ghost-mafia]

Hi.

I am à late 30s queer schizophrenic spoonie sw/tattooer, lately afflicted with chronic homelessness... and i absolutely c a n NOT lose the remaining belongings of mine that i have in that storage unit.. all of my deceased family member's urns are in that storage unit, all but ONE of my instruments are in my storage unit. My entire collection of thousands of tattoo stencils, documenting nearly every single tattoo that I have made in the last 15 years.. these are the few treasures I still have left ..

I have only NOT BEEN HOMELESS for LITERALLY TWO weeks and Ive Already lost literally almost everything I owned ONCE ALREADY*

*(in Jan of 22 my ex wife and I were moving back to Oly from LA when our completely packed uhaul truck was stolen, containing our entire combined life's work and worth of treasured art books, inherited musical instruments, irreplaceable family herirlooms and precious sentimental keepsakes) ..

MY boyfriend and I have both been thru absolutely devastating, FUCKIN SOUL CRUSHING traumatic experiences these last three years... We've survived losing beloved family members, pets, deaths of our parents and murder of my very best friend. we survived both of us getting pneumonia and blood poisoning AT THE SAME TIME .

YALL

SHIT HAS BEEN .. SO FUCKING HARD and idk how but I'm still here.

Please help me, tumblr. Draw me close to your understanding millennial/zoomer bosom and let me rest IF ONLY For a moment, knowing the meager accumulates matwrial sum of my rotten life still belongs to me. Please

I know it's .. not a massive fortune, the 232 or whatever I owe for my storage, but if you can spare even a BIT to help me.. I can't.. I just.

I have pixx and content you can buy, I can also offer excellent machine-free tattoo work to anyone local to the greater Seattle metro area. I can also read your tarot cards or draw your natal astrological chart... I am desperate and willing to exchange labor if various and sundry varieties..

Help me, almighty internet, help me

VENMO @ghost-mafia

PAYPAL @HANNAHSATAN or beatricebelialbiggart@gmail.com

MY BOYFRIEND CASH APP $chetstarr360

[eoieopda]

who

name: jade (nickname/pen name)

username: the romanized version of 어이없다, which is pronounced “oy-OPE-da.” listen to hoshi scream it here.

pronouns: she/they

age: 29

what

stars: cap sun, sag moon (it's loud), scorp rising

mbti: enfj-t

queer! my true gender lies somewhere between “just a lil fella”, “hot girl”, and also “¯\_(ツ)_/¯”, which is coincidentally also my sexual orientation

of color! asian baddie reporting for duty.

adopted immigrant! gyeongsangnam-do, r.o.k. born ⇢ u.s. raised/residing

neurodivergent spoonie! there's nothing quite like having an adhd brain that won't stop and a fibro body that won't go.

attorney! see #jade at law for posts re: this.

jew! a vehemently pro-palestine one at that.

writer! for bts, svt, skz, and ateez.

multi-stan! svt (hoshi, woozi, dokyeom + dino), bts (yoongi + seokjin), skz (hyunjin), ateez (wooyoung), wayv (ten), mamamoo (byulyi), red velvet (seulgi), kard (bm), got7 (jaebeom), shinee (4-seat bias carousel lol), the rose, youngji, bibi, etc.

where

united states (derogatory)

main/ writing: exclusively on eoieopda dot tumblr dot com

side/shitpost: @eoieopda-etc

svt fic recs: @hoshi-island (archived)

twitter: @/horanghaegeum

current nets/servers: k-vanity, bts fantasy & fangs

🪦 prev. nets : bts honey hive, bts after dark

when

eastern standard (or daylight) time

not on a strict schedule due to aforementioned adhd, fibro, + career

why

i started this blog on 11/5/22 but have been on tumblr in various forms since, like, 2010-11. i've been writing fanfic since (gulp) 2006.

having grown up in a non-korean family in not-korea, i wanted to explore some of the things i would've been into if i hadn't been adopted out as a baby. i was introduced to k-pop by my older sister in oct. 2022 — specifically bts at ytc busan. flat-earth yoongi is my roman empire. it was a freefall from there, as you can see.

how

bro, you tell me.

check out my faq if you have any questions about the above.

rev. 9/28/24

[roseandbee]

Having to go through hoops every single year to prove I'm still permanently disabled is abuse and should be illegal.