Tryna Thrive Not Survive

34, she/her, ME/CFSer, Mom, wife, slowly figuring out life…I love to chat and meet new people. Say hey if you’re up for it.

[consider-your-potatoes-mashed]

Y’all, what’s the benefit of getting a hEDS diagnosis? Every Doc I’ve seen has brought up that I probably have it but none will actually evaluate me for it (based on the criteria to my understanding I definitely fit it) and I keep getting told there’s no point in actually getting the diagnosis so they don’t want to do the evaluation. They’ve offered genetic testing which is nice but that shits expensive and I know technically necessary for the diagnosis but if they won’t even do the in office evaluation what’s the point of it (I mean unless I have one of the other types)

Can I claim it for myself? I understand if not since I’m not formally diagnosed but I’m just curious.

[beakstwopointoh]

So there are some risks of hEDS that are worth having checked out/knowing if you have them. When I was evaluated my doctor concluded I had HSD, not hEDS, but ordered an echo of my heart to make sure there was nothing wrong with my aorta. It’s definitely important to know if there’s any vascular involvement.

[scretladyspider]

I cannot stress this enough: queer people don’t care if kids aren’t queer. What we do care about is queer children becoming queer adults and not dying before they get there. It really is that simple. Any additional context you’ve added to justify your bigotry is your own fiction.

[crippled-peeper]

If your diagnosis didn’t relieve you at all, well, that’s perfectly ok. There is no singular disabled experience.

[crippled-peeper]

Some people don’t have answers for years about what is wrong with them and need the relief that comes with a diagnosis to cope with the mental anguish they’ve endured

Other folks (like myself) expected something more benign to be wrong and were blindsided and unprepared to cope with a massive, life-altering medical condition, and had to work on that trauma and overcome it

And sometimes it’s both

[beakstwopointoh]

I experienced both. Relief that I wasn’t dying, followed by the growing realization that I have an untreatable incurable illness.

[beakstwopointoh]

I use an Apple Watch to help me pace during the day, and to track the quality and quantity of my sleep. Recently a research study I’m participating in sent me a free Fitbit (charge 5) to wear for part of the study. I got it all set up yesterday and wore both my Apple Watch and my Fitbit to sleep last night. My Apple Watch logged 8hr 43min of sleep with 43 minutes of deep sleep. My Fitbit logged 8hr 52min of sleep with 2hr of deep sleep! Which do I trust?! I feel like I can’t trust the data from either watch now for sleep stages given how different the results are. Anyone out there used both and have an opinion for me?

[voidnoisesmp3]

i'm still learning to knit and I cannot for the life of me understand half of the patterns

[voidnoisesmp3]

I think I got it? I don't know. but I will trust the process

[voidnoisesmp3]

I have not. and I am now frogging it

[voidnoisesmp3]

this has consumed me

[beakstwopointoh]

What a relatable rollercoaster this was

[mamakay93-deactivated20190129]

Just an FYI for those in the US with insurance issues

[teratomarty]

Important information! Insurance coverage decisions are made by medically ignorant bean-counters. Until we can dismantle the whole shitty system, know how to scare them into submission.

[nerdgasrnz]

This is like that procedure Mr. Incredible told that old lady

[help-my-ocs-breached-containmen]

Reblogging for visibility

[capricorn-0mnikorn]

[Image Description: Text: Medical Hack: So, your doctor ordered a test or treatment and your insurance company denied it. That is a typical cost saving method. Okay, here is what you do:

Call the insurance company and tell them you want to speak with the “HIPPA Compliance/Privacy Officer” (By federal law, they have to have one)

Then ask them for Names as well as Credentials of every person Accessing Your Record to make that decision of denial. By law you have a Right to that informantion.

They will almost always Reverse the Decision very shortly rather than admit that the committee is made of low paid H.S. Graduates, looking at all “criteria words,” making the decision to deny your care. Even in the rare case it is made by medical personel, it is unlikely that it is made by a board cerified doctor in that specialty and they Do Not Want You to Know This!

Any refusal should be reported to the U.S. Office of Civil Rights (OCR.gov) as a HIPPA violation. Description ends]

[iamrainbowbrite]

Reblogging for visibility!

[supmynameisuseless]

I’m so fucking sick of diabetes jokes. They’re everywhere, like people somehow think it’s ok to make fun of a disease like that. 

“that’s got so much sugar, it’ll give you diabetes!” 

first of all THATS NOT HOW ANY TYPE OF DIABETES WORKS. 

Second of all, even if it was, and people ‘gave diabetes to themselves’, it’s just not funny! Who gave you the right to make fun of a literal disabled person just because you think they deserve it because they ‘brought this onto themselves’? that’s fucked up! All types of diabetes have a genetic component, and specifically for type 2 diabetes, you don’t know that person’s circumstances. Recent studies are showing links between type 2 diabetes and poverty, as sugary overprocessed food like fast food is cheaper and sometimes more accessible. And once again, there’s still a genetic component. 

‘that’ll give you diabetes’ jokes are just not funny. They’re insensitive, and as a type 1 they’re just a constant reminder that I have a disease that is heavily misunderstood and weighs on me every day. I’ve heard like 10 in the past week and just now heard another one and it was the last fucking straw. DON’T MAKE THEM. 

[supmynameisuseless]

This is 100000% ok for non diabetics to reblog I would appreciate that very much 

[beakstwopointoh]

Good lord is there a genetic component. I’m currently prediabetic and I haven’t eaten sugar since 2020.

[giantkillerjack]

Today my therapist introduced me to a concept surrounding disability that she called "hlep".

Which is when you - in this case, you are a disabled person - ask someone for help ("I can't drink almond milk so can you get me some whole milk?", or "Please call Donna and ask her to pick up the car for me."), and they say yes, and then they do something that is not what you ask for but is what they think you should have asked for ("I know you said you wanted whole, but I got you skim milk because it's better for you!", "I didn't want to ruin Donna's day by asking her that, so I spent your money on an expensive towing service!") And then if you get annoyed at them for ignoring what you actually asked for - and often it has already happened repeatedly - they get angry because they "were just helping you! You should be grateful!!"

And my therapist pointed out that this is not "help", it's "hlep".

Sure, it looks like help; it kind of sounds like help too; and if it was adjusted just a little bit, it could be help. But it's not help. It's hlep.

At its best, it is patronizing and makes a person feel unvalued and un-listened-to. Always, it helps reinforce the false idea that disabled people can't be trusted with our own care. And at its worst, it results in disabled people losing our freedom and control over our lives, and also being unable to actually access what we need to survive.

So please, when a disabled person asks you for help on something, don't be a hleper, be a helper! In other words: they know better than you what they need, and the best way you can honor the trust they've put in you is to believe that!

Also, I want to be very clear that the "getting angry at a disabled person's attempts to point out harmful behavior" part of this makes the whole thing WAY worse. Like it'd be one thing if my roommate bought me some passive-aggressive skim milk, but then they heard what I had to say, and they apologized and did better in the future - our relationship could bounce back from that. But it is very much another thing to have a crying shouting match with someone who is furious at you for saying something they did was ableist. Like, Christ, Jessica, remind me to never ask for your support ever again! You make me feel like if I asked you to call 911, you'd order a pizza because you know I'll feel better once I eat something!!

[drtanner]

It's incredibly frustrating when someone does this. My mother used to be awful for it before I moved out; with the best will in the world she would constantly undermine me in exactly this way and then get indignant when I dared to point out that she wasn't really helping me at all. It wasn't until I started using kid gloves to explain things to her that the situation improved at all and thankfully I have managed to teach her that yes, doing exactly as I say when I ask her for help is the best way to support me, and because I know she loves me, I also know that she would want to be told how to help me in the correct way. It's not criticism of her as a person, just me explaining to her the best way to help me, which is information that she wants because she loves me and wants to do right by me.

Should I have had to explain that to her? No! Was it enormously tiring to have to teach her something on top of everything else, when I was already in need of help? Yes! But it's done now, and it's better.

Anyway, if you love a disabled person, listen to us and help us as we ask instead of second guessing us. Thanks. ( b ._.)b

[consider-your-potatoes-mashed]

Who the FUCK decided that insurance companies get to decide what’s medically necessary????????

[beakstwopointoh]

Did you know in the 1960’s you could order a live monkey from an ad Boy’s Life magazine?

[prof-grace-aspen]

"So YoU'rE sAyInG mEn HaTe OtHeR mEn?"

Yes. Yes I am. And you can ask literally any marginalized man and they will tell you American Patriarchy hates them, too, specifically because they are being men in the "wrong way".

Like fuck, this is feminism 101.

Edit: it's non-radfem feminism 101.

[weirdlittleguy]

Just look at the way that manosphere wierdos talk in reference to other men: they are competitors to be dominated either socially or with explicit violence. The whole grift is built on selling men the idea that they can climb their way to the top of the pile

[prof-grace-aspen]

^^^ This. It's like a pyramid scheme of abuse. "If you throw fifteen men under the bus and convince five of your friends to throw fifteen other men under the bus, you can Win at Patriarchy, we promise!"

[copepods]

coworker told me he “hates all mollusks” today. and to each their own obviously but like… theres 100k species of mollusk… you really hate all of them bro? nautiluses and oysters and snails and nudibranches and chitons and thousands of animals youve never even heard of???? what did ammonites even fucking do to you

[mallsharks]

he hates sea bunny?

AND leaf sheep??

[myalgicencephalomyelitiscfstom]

Warning: Contains the F-word

[discodeerdiary]

Something that I first applied to working with children, and have applied in a limited form to working with adults: you don't need to tell someone when they read your instructions wrong. Sometimes it's enough to point out what they did right and then whatever they didn't do? You ask them to do it in more precise words, and you make it sound like it's a new request. Remarkable how fast things get done this way.

[discodeerdiary]

This is also a habit I built up from emergency response training. If I say "I need you to bring me a first aid kit and an accident report" and you bring me just a first aid kit, it's so much more efficient to say "thanks now can you bring me an accident report" than "I asked you to bring an accident report why didn't you bring me one".

[discodeerdiary]

Once you've internalized "a person bleeding out is one of the worst times to start an argument" you start to wonder what other tasks could get accomplished without arguing

[entomologize]

Crochet barbel beetle pattern by Julia Kalmykova

[andhumanslovedstories]

I know this is the only thing we talk about when we talk about blue people Avatar movies. But I just remembered the second one came out last year and presumably it didn't flop because I think I actually would have heard more about it if it flopped, and I could not tell you one single solitary thing about it in the slightest. Fascinating. An absolute lacuna of media that has made billions

[andhumanslovedstories]

AVATAR 2 MADE 2 BILLION DOLLARS??? IT WAS THE TOP GROSSING MOVIE OF LAST YEAR??????? BY A MARGIN OF A BILLION DOLLARS??????????????????

??????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????????

[andhumanslovedstories]

This movie franchise to me is like the inverse of Riverdale where I knew nothing about that show because it’s so balls to the walls unhinged that everything about it sounds like a lie, therefore learning about Riverdale is a horror and a delight. I don’t wanna watch it, but I do want to always know more about it. Avatars movies I also know nothing about but in a super boring way. Learning things about these films have all the scintillating interest of reading someone else’s weekly innocuous grocery list and the only interesting part is that the bread and eggs they need to buy $100 million dollars.

[andhumanslovedstories]

I had a patient last night who was watching Avatar 2 when I came in to say hi at shift change, so when I come back a couple hours later do a full med pass and all that, I asked how the movie was, and the patient said, "it turns out I was rewatching the first one but since I didn't remember anything about the first one, I didn't realize it was the wrong movie until I was nearly done with the film."

[voidnoisesmp3]

would anyone be interested in a CAL (crochet along) with a free pattern? I'm wanting to get more into the community here and I <3 seeing how differently people do patterns.

should we do a cal (crochet along)

yes

no

Voting ended onJun 25, 2023

[herdaz-deactivated20250625]

That sounds fun!! I’ve actually never done a CAL before, and I agree, I love seeing how different people do the same pattern!