Spoonfuls of Grace

I'm Michaela, and I've got EDS, POTS, fibromyalgia, and CFS. Other labels include Christian, nerd, artist, and musician.

[spoonie-living]

Spoonie Planner & Medical Diary Giveaway

Hey, everybody, we’re thrilled to announce this super neat giveaway!

As you might remember, Jessica of Our New Healthy recently crowdfunded and launched her beautiful Spoonie Planner and Medical Diary set. She’s generously provided us with a set in blue to give away to one lucky reader.

This is an absolutely beautiful product, both inside and out. The planner has daily pages with a guided structure to keep your life balanced, with encouraging quotes, worksheets, and more. The medical diary has lots of space for medication history, doctor info, symptoms, and all sorts of other things. You can check out the details and features on her site.

Want it? Enter here!* You can submit up to 7 entries via different tasks, so be sure to catch ‘em all! Entry period ends March 29th.

May the spoons be ever in your favor 😆

*Heads-up: we’re only able to mail to a US address, and minors will need an adult to sign off on things if they win. You can find more info on the entry page.

[spoonie-living]

Just a few days left, loves! 💜

[fuzzyspork]

When I saw this article I was like this is what happens when you build something in the Sims for the first time but don’t quite have a grasp of the scale. You start with a big box and fill it with rooms. Then you move a Sim in and it takes them two hours to go from the front door to the refrigerator.

[xazuhira-deactivated20180701]

I didn’t know something as terrifying as this could count as a house

[themintycupcake]

@mcmansionhell

[27-teacups]

imagine how shitty those 72 rooms have to be for it to only be 3 million

[vorked]

It’s been marked down well over 20 times due to no one wanting it. Cleaning costs would be so fucking high that no one would ever want to deal with it.

[daggers-drawn]

We should collectively buy this and turn it into a commune.

[lesbian-moon-gf]

this is disgusting

[steviemcfly]

On the one hand, the mortgage would be just over $300 a month split between forty-six people, which would almost be worth living in Texas with forty-five of you nerds

On the other hand:

[spoonfulsofgrace]

Okay but spoonie mansion?!

[postitforward]

Color me!

Tumblr Creatr Josh Lafayette (@joshlafayette) designed this patch for the Mental Health Quilt. This is just one of 8 squares designed by our Tumblr Creatrs. Pick your favorite and join us in building a big, beautiful digital quilt. You can submit it here, or tag it #postitforward and we’ll reblog it.

[spoonfulsofgrace]

@agent-hardass, this looks like something you'd like!!

[indoorcattt]

Don’t be a salty bitch 💁🏼

[spoonfulsofgrace]

@indoorcattt: *sends 40 snapchats in a row* me: what did Gary do now

[anundeadspoonie]

#merwitch hair wooo

[justlindseymorgan]

[condensedposts]

“Despite their disability” reasoning separates disabled people from their disabilities.

Many disabled people, such as Steven Hawking (who has ALS), have said that their disabilities are the reason they have done such great work.

Many artist’s and musician’s work is unique because they did not use colors they could not see or notes they could not hear.

Blind musicians like Stevie Wonder had to use one hand to read Braille and the other to play piano, which also shaped their music.

Saying disabled people did something “despite their disability” treats them as abled people with a flaw. It ignores that many of disabled people’s talents are because of their disabilities.

Original post here

[mcdyke-deactivated20171112]

being a female means needing to see 10 different doctors to get a proper diagnosis because they always think you’re exaggerating and/or lying

[leftiesneedrights]

define proper diagnosis. I mean, does that just mean the diagnosis you want?

[mcdyke-deactivated20171112]

no :) it means going to 10 different doctors who disbelieved your symptoms until the 11th found cysts on your ovaries :) which may mean infertility :) sit on a cactus :)

[cobra-23-deactivated20151224]

I call bullshit

[40yodater]

Of course you do. Like the first 10 doctors. 😒

[cobra-23-deactivated20151224]

I call bullshit on the story. If you think you have an issue you should see a specialist not just your PCP.

[40yodater]

Like the 4 “specialists” I saw for the crippling numbness in my face and legs I had for over a year while they told me it was “stress”? When it was finally found that I had scars on my brain and spine? Those “specialists” we’re male neurologist who wouldn’t give me an MRI because “women stress too much”. Go fuck yourself.

[beesplosion]

MY SPINE WAS BROKEN FOR 2 YEARS BECAUSE MY DOCTORS TOLD ME I JUST HAD BAD CRAMPS AND REFUSED TO TAKE XRAYS. FUCK YOU AND YOUR ENTIRE LIFE. WHEN WILL BOYS REALIZE THEIR EXPERIENCES ARENT STANDARD???? I ALSO LOVE THIS IDEA THAT YOU CAN JUST GO TO A SPECIALIST WHENEVER YOU WANT LOL IF OUR PCP DOESNT BELIEVE US WHEN WE TELL THEM OUR SYMPTOMS THEY ARENT GONNA REFER US TO A SPECIALIST YOU FUCKING MOLDY WALNUT

[proudly-pro-choice]

My parents began noticing something large in my throat, saw a specialist….Guess what? Told me to lose some weight..even though I wasn’t overweight. I would have my period for weeks at a time. Was told that it was teenage hormones and stress.

Two fucking years later I attempted suicide they ran a battery of tests as required and bam! They find out that I have untreated Hashimoto’s. The “thing” was a goiter. Possible symptoms of an untreated thyroid disease is the goiter, unexplained weight gain, and depression. All they had to do was test my blood, but they said young people don’t have thyroid problems. 😒

-Allie

[tikkunolamorgtfo]

Ten years ago, my mother—who is a pretty tough cookie—started feeling both ridiculously wired, anxious, and incredibly emotional. Every doctor she saw told her she was going through early menopause, even though she was still menstruating. Her health declined to point where she was barely sleeping, losing weight, and crying constantly, which was a huge red flag because my mother never cries. Finally, she went to see another doctor 2.5 hours away who referred her to an endocrinologist. And what did the endocrinologist say? He diagnosed her with one of the most advanced cases of Grave’s Disease he had even seen, and said if she had gone just a few more months without being treated, she could have FUCKING DIED. 

Also, it turned out that her thyroid levels had been moving out of the normal range in a progressive pattern for years, but nobody bothered to look at her past test results until after the diagnosis. They would just do a test, see that it was “in the normal range” and leave it at that. She could have caught it before she even had symptoms, instead of basically being accused of having hysteria. 

[celestial-cat-prince-deactivate]

i had a brain aneurysm/hemorrhage ten years ago, doctors still tell me im faking my disability BECAUSE YOU CAN TOTALLY FAKE LIMITED MOVEMENT OF THE LEFT SIDE

[symphonicsadness]

My sister had intercranial hypertension which was causing headaches, dizzy spells and loss of vision, and you know what the hospital told her? She was being a hysterical girl and making it up. A few weeks later she spent roughly a month in hospital and had several lumbar punctures to relieve her RECORD HIGH spinal pressure that was causing so much strain on her brain and optic nerves she was being sent blind.

[fail-sage]

Everytime I see this post (and it’s been a good 5/6 times), it has different stories and experiences of women who have been horribly mistreated by doctors and it just blows my mind that this is so big. It’s absolutely disgusting how terribly women are treated in the medical world and something needs to be done about that.

[kirawords]

my friend lea had back pain, then pain in her legs and feet, and then numbness. despite seeing 7 different doctors over 2 years, by the time they found the cancer it was inoperable. chemo and radiation didn’t work. the cancer spread. she died and left behind a 5 year old daughter.

[kaijuno]

A few years ago I would go through spells where I literally could not stand on my own and I couldn’t get out of bed. I would be freezing and too weak to eat. I would keep having heart palpitations as well. I got up the money to go to a clinic and they told me it was just stress and to basically just work on chilling out. I saved up money for a few weeks to do this and I pretty much get a “chill out” from them. As time went on it got worse, most noticeably the heart palpitations were happening almost constantly. I went again to a different clinic and was told it was normal and that it was probably stress. They did no tests, and they told me it would “just go away”. Two weeks later I ended up collapsing going down some stairs, and at the hospital it was discovered that I had such severe anemia that my heart could barely keep up with trying to get enough oxygen to my body. I had developed left ventricular hypertrophy (my heart muscle is too big) and because of them ignoring me and dismissing me I’m at a much higher risk of heart attacks and stroke now.

[spacebabenumber-25]

I went to the doctor with severe intermittent pain in my upper right stomach area that was so bad I had to miss school. Despite the fact that my period has been on a regular 3 month cycle for years, and I still had two months left until my period, my doctor told me it was period related cramps and or indigestion. 2 months later I’m in the hospital getting my gallbladder removed. It was so obstructed that there was gangrene developing my my system.

[words-writ-in-starlight]

So…everyone who’s given me shit for that one post (about medicine and equal treatment and shit) can just read this because I’m sick of defending my case.

[hypergoomba-deactivated20171103]

i know this post is already long but here’s a pretty good article about how gender bias in medicine is quite literally killing women. it focuses a lot on heart attacks but it applies to all areas of medicine

[magic-and-moonlit-wings]

One of my sisters went to the hospital with sudden and severe abdominal swelling, such that her roomiest sweatpants barely fit. She got sent home. About three hours later she was in so much pain that her husband called an ambulance. I don’t remember what was wrong (this was about ten years ago) but I think she needed surgery.

I overheard her comment to my parents after the fact (we went to their town to visit her in the hospital) that she’s pretty sure that, when she first went in, the ER people thought she was “just a fat chick with a stomach ache” (her words), what with the medical system being prejudiced against women and the overweight. (She’s not overweight, or maybe she’s just over the line, but abdominal swelling made her look fat - and even if she were obese, that doesn’t justify withholding medical treatment!)

[humanityinahandbag]

Went to the doctor and said my lungs hurt too much to breathe. They said, “you’re smiling, though! That must mean that you’re fine!”

I was like, “naw, man. Listen. I know me. And I know that this isn’t fucking normal.”

“You’re fine!” they said. “Just take a day off!” they said.

“Take. An. X-Ray.” I said.

When they figured I wouldn’t actually leave unless they gave me what I wanted, they grudgingly (and a little snobbishly) took an X-Ray expecting to find nothing and hold it in front of my face and sing nah-nah-nah-nah-nah-nah to their hearts content.

Turned out there was something.

Both my lungs were filled with fluid.

I had double pneumonia.

Just sleep on it, my ass.

NOTE TO DOCTORS. JUST BECAUSE WOMEN ARE CONDITIONED TO SMILE AND BE POLITE AND NICE (but shouldn’t everyone be polite, I mean jeez) DOES NOT MEAN THAT WE’RE NOT IN EXTREME PAIN. LIKE, FUCK- YOU SHOULD BE IMPRESSED AT HALF THE SHIT WE SMILE THROUGH!

[spoonfulsofgrace]

I had a constant headache that didn't go away for like four months and I couldn't fall asleep till super late so I'd sleep super late and the neurologist was like "eh, you're homeschooled. You can sleep all day and do school at night, it's no biggie"

And I went to the ER and they gave me glorified tylenol for the headache that obviously I'd been taking tylenol for with no results

Finally went to a different ER and got admitted, and they were like, "woah, your electrolytes are WAY out of balance" because literally everyone was like "drink more water" and I finally got diagnosed with the first of several chronic illnesses

Then at my first (and only) appointment with my first rheumatologist, he basically popped in, poked a few spots, said "yep, it's fibromyalgia" which we already knew, but claimed I didn't have Ehlers-Danlos Syndrome, just "benign hypermobility syndrome." I have to wear braces on most of my joints and it's difficult to walk, does that sound benign to you??

First appointment with my second rheumatologist was the first time I got the "it's all in your head" treatment. "Oh, you're Christian, you live in the middle of nowhere... It's obviously in your head, because depression can cause pain." She admitted she was wrong after the physical examination, and said that I have plenty of physical reasons to be in pain. But so many doctors just jump to the conclusion that you're making it up, or it's in your head, or you're a drug seeker— there's no way you could know your own body and what it needs, right?

[shit-abled-people-say]

Shit Abled People Say #70

“I work with people who are handicapable, so I know what I’m taking about. You need to do your research before you speak.” I’m disabled. I was talking about my experiences as a disabled person.

[mioxenoblade]

pseudo intellectual asshole: “everyone’s taking too many pills. they don’t like to feel, so they take pills. we need to stop taking so many pills and live life.”

my pill taking ass: “i can’t wait for the pill that makes me unable to hear you.”

[vaporize-employers]

dont ever talk to me or my 47000 medications ever again

[seaofdreams-moved]

tbh if i was given the chance i’d trade my uterus for a bag of Doritos and a cool looking rock

[spoonfulsofgrace]

@indoorcattt

[fibro-larious]

[okwowcool]

fruit pill case | $2.42

[softshirringsound]

You know you're a spoonie when

Your pharmacy calls to let you know a medication is ready for pick up and you have no idea which medication, when it was called in, or why.

[pixelatedboobs-blog]

Patients is a virtue.

[northmiamigoon-deactivated20150]

maybe she a doctor

[disabilityhealth]

If the zombie apocalypse happens I’m going to have to hit up a pharmacy first thing