#spoonie lyfe

[krakenartificer]

Has anyone made a "So You're A Spoonie Now" pamphlet

for friends/family who have never been disabled before, and need to be informed of basic chronic illness tenets like

"accepting help is good, actually"

and

"seriously, anyone pressuring you to socialize when you're unwell can fuck right off"

?

I've had two of those conversations today, and I'm starting to wonder if someone's already made a resource I can point them towards

#chronic illness cw #coronavirus cw #long covid cw #spoonie lyfe #request

[maas-feels]

Art I did a few weeks ago. Its a pain pump, a pain pill, the CRPS ribbon, a pacemaker, a wounded heart, and spoon.

#chronically ill #chronically online #chronically sick #chronically fabulous #chronic community #chronic illness art #chronic pain #crpswarrior #crpssucks #crps/rsd #pacemaker #pain pumps rock #spoonie lyfe am i right fellas #spoonie #spoon theory #pain medicine #my art on tumblr

[irisbleufic]

Just FYI: I responded to a bunch of lovely comments yesterday and a few private messages/asks this morning, but I am officially so burnt-out that all I can do is lie here and try not to spill the tea I’m too exhausted to sweeten. There might be some delay over the weekend re: me getting back to comments and other messages. My spoons are g o n e.

(My version of autistic burnout is, when my body and mind have had enough, they just go on strike. It’s so near-instantaneous that it’s actually comical. Just like, nope. We are flop.)

#asides #autism spectrum #spoonie lyfe

[jxpper]

Friend: [sees my bag full of pill bottles] damn, you must like to party

Me: hehe no, those are for my issues

#im a mess #anxiety #chronic illness #spoonie #spoonie lyfe #depression #ocd #shitpost

[chronicforlyfe]

That moment when Google calls you out on your bullshit

#mental illness #spoonie #spoonie lols #dysautonomia #chronic illness #pots #postural orthostatic tachycardia syndrome #chronic for lyfe #chronically ill #chronic fatigue #spoonie problems #chronic pain #invisible illness #potsie #disabled #heds #hypermobiltity #neuropathy #actually bpd #actually hypochondriac

[stitch-n-time]

Topic of Conversation

The setup: I have ehler-danlos syndrome. My primary care physician (PCP) is the one that finally agreed to have the test run, after my seeing like 6 or 7 other doctors that just totally dismissed the idea. I love her. She's fabulous. Would recommend to at least most people. She's also gotten used to me over the past 3-ish years. She's told me in the past that she knows it's going to be an "interesting day" when she sees my name on the patient list. Everything from "my foot folded in half" to "I need you to help slice my toe open to fix this particular thing" to "I touched my leg and the skin split" to the latest one - "I woke up and my thumb was dislocated". All while having conversations that range from "we're going fishing tomorrow" to "haunted museum tours, you should totally bring your kid!" to "no no no... If you're still pregnant on Halloween, you should TOTALLY do the chestburster!" and a little bit of everything in between. So yesterday I go see her because... well, my thumb dislocated in my sleep. Like 2 weeks ago.  It hasn't been quite right since. It keeps subluxating (not quite dislocated, but not quite in the right spot), my grip strength is nonexistent, and it's becoming a problem. While there, I show her a ring brace that I think may help and ask her opinion. (Also about some supplements made specifically for people with conditions like mine, and she’s all gung-ho about my being a guinea pig for this particular one. Will update after they come in, and after taking them for a while.)

“I don’t know. I think it may help? But they’re also really expensive, and I don’t want you to have to spend that much without knowing more. Would you mind going and getting some x-rays? Maybe seeing a sports medicine specialist at the building I used to work in?”

me: “Sure! I would actually feel a little better getting a third* opinion on this, and having the images might help. It doesn’t feel like there’s bone chips or anything but still...”

Dr B: “OK. Let me print out a referral for you. And I’ll get the order for the blood test, so after you’ve taken those supplements for about a month, go ahead and get the bloodwork done. I want to see what happens there.”

me: “Yeah, great. That’s totally doable. And if anything happens with those, I’ll let you know and discontinue use.”

A little later yesterday, I get a phone call from her assistant. “Dr B told Dr D about you over lunch, and he said to go ahead and get just an over the counter soft brace for now. He’ll confirm when he sees you.”

Which... great. Now I know these two are friendly. Cool cool cool.

I call this morning to see if Dr D has openings for some point within the next couple of weeks. “Yeah, we’ve got an opening in about a half an hour. Can you be here?”

“Sure! I’m on the way home from work and haven’t passed that turn yet. Let’s go ahead and do it.”

Now, some important information here: I met Dr B while she was at the teaching hospital. I followed her from her observation, through where she was doing the observations, and into the new building where she works now. Dr D is currently at the teaching hospital, where he is doing the observation of upper level students who are working through their rounds and getting practice before being sent out into the world.

So I get there, go through the weight/height/blood pressure thing again, and go sit in a room. Student doctor comes and does an exam. She’s really taken aback by the whole “Yeah, Dr B had no idea either. But she was the first person to take me seriously. Mostly because she admitted that she had heard about ehlers-danlos but had never seen it, so she looked it up on the internet and essentially ran down the checklist while I listed off symptoms. Immediately ordered the test. Which, really? Just a simple blood draw? That could have been done years ago!” thing. Then we get to laughing about it.

SD: “Can you do that thing where you touch the ground, but with your hands flat? I can’t even touch my toes.” She demonstrates.

I laugh. “Yep!” Stand up, smack my hands flat on the floor and keep walking them back until my shoulders are behind my knees. “Want me to keep going?”

At this point she’s laughing, too. “What else can you do?”

“Touch my nose with my toes. Put one arm up and one arm down and grab my wrists behind my back. Before I had kids, I could bend backwards and put my heels on my chest. From behind. But I can’t do that anymore.”

Student doctor leaves. I can hear muffled conversation through the wall adjoining the exam room to Dr D’s office. Student doctor comes in. Dr D comes in, with a really amused look on his face. Introductions are made, he repeats the exam, checking a couple of things that student doctor didn’t know to check. He’s explaining why as he’s doing the exam. I’m nodding along, because this is familiar territory to me, thanks to previous work experience.

Dr D is doing the “Does it hurt here? Here? Here? What about if I do this?” thing while poking at the thumb and wiggling it around.

me: “No, not there. Pain receptors don’t quite fire correctly because of the EDS. The pain is specifically here, here, and here,” said while I put a finger on the spots.

Dr D: “Oh yeah. I forgot about that.” He leans back against the counter. “Honestly, you’re the first person I’ve ever actually seen with EDS. So a lot of my knowledge is more theoretical. What did you do that might have caused this with your thumb?”

me: “Slept?”

They both blink at me a few times. It takes a minute. 

Dr D: “No, no. I guess that makes sense. With your condition and all.”

me: “Yep. It just kinda happens. Now I know you talked to Dr B yesterday and approved a soft brace, but I want to show you something and get your opinion. Because I research everything. It’s what I do.” 

I pull out my phone and show him this:

“I’m more worried about the lateral movement than the hyperextension, since the hyperextension is something that’s happened ever since I can remember and has never been a problem.”

Dr D: “Oh yeah, that will do everything I would hope for. Probably a little more. That looks better than anything I would have been able to recommend.”

me: “Perfect! I’ll see about ordering one, then. I was reluctant because of the price.” I stare at it for a minute. “Or maybe I’ll see about getting some sturdy wire and just making it my own damned self.”

Dr D: “I’m still going to send you for x-rays. I don’t think there’s anything there, but it’s a safety precaution in case of bone chips.”

me: “Yeah, Dr B and I talked about it yesterday, but I thought it would be a good idea to see you first. I don’t think there’s anything in there, but...”

Dr D: “You know we’re having lunch with Dr B today, right?”

me: “Yeah, I kind of figured. She fan-freakin-tabulous. Just don’t tell her I said so.”

Dr D laughs at me. “Yeah, we’re best friends. It may just slip. That happens sometimes. You already know we’ve talked about you, since her office called you yesterday.”

me: “More power to ya. Hell, if you want to talk about me to more people, let me know. Especially if there’s a new doctor you want to freak out a little bit. I’m an interesting case, and will absolutely tell them when they’re wrong.”

Dr D: “Oh. We are definitely going to be having a talk over lunch today...”

*third opinion, as she is confident that I have stupid amounts of self awareness, and actually know if something isn’t right before test results would show anything, so her confirmation counts as a second opinion when it’s just the two of us in the room

#ehlers danlos syndrome #chronic illness #spoonies 4 lyfe

[mediocrefuckingbeing]

i am so genuinely distraught over the fact that my vision just started to suddenly go on me. It’s so bad that I can only see things directly infront of me which is shit timing since I’m starting my fucking job next Monday. I fucking hope it’s not any underlining health issues causing it because that would really be a bitch.

#spoonie things #spoonie #the spoon theory #shut up k #fuck ma lyfe #UGHSNXBDVXHBE #FUCKING SUXX MAN #vision #eyesight #im already having a fuckton of anxiety about work and inwanna fucking D I E

[deliriouscomfort]

yooooooo

NOT ONLY DID MY INSURANCE APPROVE MY APPEAL TO BE ABLE TO SEE A HIP PRESERVATION SPECIALIST (who normally wouldn’t be covered), but I WAS ABLE TO GET IN TO SEE HIM *this* MONTH!!!

This is a spoonie dream come true.

#spoonie things #chronic illness #chronic pain #eds #ehlers danlos syndrome #bursitis #personal #medical stuff #disabled #af #what a lyfe

[bee-girlfriends]

I've been cold and sad and tired for weeks now

#personal #chronic illness #mental illness #spoonie #out of spoons 4 lyfe

[thedrawingduke]

Ahh you’re one of the first blogs I ever followed on here and I’m low key emotional to see your posts again. Idk if tumblr was being weird or you just haven’t posted in a while. Either way, love seeing your work again!

Aww thank you so much! This is...such a sweet message. It wasn’t tumblr, I have not been posting here at all. I’ve been unable to keep up my duties on social media, sadly. Spoonie 4 lyfe.

But I am hoping to get back into a routine again! Thanks for the encouragement

#Anonymous

[krakenartificer]

Hey yo, fellow spoonies --

I have an ergonomic setup for my desk that encourages good postural alignment and keeps me from getting migraines, and that's fantastic ... as long as I have enough energy to work at a desk.

If fatigue only lasts a day or two, I can get back to pain-free relatively easily. But this bout is in its *checks notes* third week, and I can't keep pretending it's going to pass any day now.

SO

who has good ideas / products / systems / tools for working in bed or in a recliner, that still allows me to keep my shoulders straight, my neck muscles unstrained, and my wrists un-repetitive-motion-pained?

#request #spoonie lyfe #chronic illness cw #chronic fatigue cw #pls help

[maas-feels]

Why does Kronk remind me of Markiplier?

And Yzma is Ethan lol 😆 😂

#chronic community #chronically ill #chronic pain #chronic illness #spoonie lyfe am i right fellas #spoonie #i hate it but i love it #crpsproblems #crpssucks #crpsfighter

[jxpper]

Taking my vitals before bed

blood sugar : WHY YOU SO HIGH THO?

Heart rate: WHY YOU SO HIGH THO?

blood pressure: WHY YOU SO HIGH THO?

Heart Rhythm: WHY YOU SO IRREGULAR THO?

SpO2: THANK GOD YOU'RE NORMAL

#spoonie lyfe #spoonie #chronic illness #fml #bruh #tags for days apparently #diabetic

[chronicforlyfe]

No one:

Not a soul:

Nothing in the vast emptiness of the universe:

My body: PUKE!!!! FAINT!!! FEEL GOOD BUT KEEP PUKING!!! CONFUSE DOCTORS!! SLEEP!! SNAP CRACKLE POP!! NO FOOD FOR YOU!!! CONFUSE MORE DOCTORS!! EVERYTHING IS FAILING BUT APPEARS NORMAL!!

And most importantly,

KEEP FUCKING 🎶PUUUUUKING 🎶

#third day hospital stay #dysautonomia #chronically ill #postural orthostatic tachycardia syndrome #hypermobiltity #neuropathy #chronic for lyfe #chronic pain #spoonie #spoonie lols #pots #chiari #chiari malformation #hypermobile ehlers danlos #dysautonomia probs #gastric emptying #regurgitation

[stitch-n-time]

beansthekid replied to your post “Topic of Conversation”

Me too! ^ I'm always afraid of speaking up at the doctor's because of like, trauma. But it doesn't make it easier when doctors are flat out disrespectful, especially when you express an idea of what your own issue is. Not all doctors are like that of course, but many I've encountered.

It’s a huge problem. But thank goodness there are at least a few that are willing to actually pay attention to their patients, and are willing to  go out on (short) limbs to find out what’s going on.

And really? When you DO find those rare ones that listen? The floodgates open and they learn so much about everything and it just feels good to have somebody listen, especially since they’re in a position to be able to help. And it’s just something that non-spoonies don’t understand at all. Not for lack of trying, but just because there’s absolutely no sense of what it’s like.

#beansthekid #spoonies 4 lyfe

[44faced]

Spoony Rachi & Smoke Skywalker - Playas Klub

Spoony Rachi & Smoke Skywalker's "Playas Klub" is a strip club anthem. Hailing from the NorfSide of Atlanta representing the prestigious Rachi Lyfe Entertainment, Spoony and Smoke just released their smash album the SS RACHI Project. Playas Klub is just one hit off the album.

https://soundcloud.com/user-776661181/playas-klub

Spoony Rachi & Smoke Skywalker’s “Playas Klub” is a strip club anthem. Hailing from the NorfSide of Atlanta representing the prestigious Rachi Lyfe Entertainment, Spoony and Smoke just released their smash album the SS RACHI Project. Playas Klub is just one hit off the album.

Stream Spoony Rachi & Smoke Skywalker – “Playas Klub”:

SoundCloud: https…

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