spoonie-living

[spoonie-living]

Spoonie Living is now an archive

Hi folks,

Working on Spoonie Living has been a real honor. The pandemic interrupted my work in a big way and led to a hiatus announcement a few years ago; as the dust settles, I'm finding that this isn't a project I want to continue. My life has changed, and so have I—there's no point in forcing it.

I'll be leaving the website up as an archive in case it can be useful to anyone. If I find things of particular note, I may post here and there. And if I do any related projects, you'll hear about it here too.

As part of my final website update, I have added a directory of some of the tags I use most commonly.

Note: As time goes on, links to outside sites may break; I recommend running those links through the Wayback Machine, which is a great way to find web content that's no longer available.

Thank you everyone, for being a part of Spoonie Living with me! It meant so much to me as I found my place in this community and the world.

❤️, Editor Diane

[spoonie-living]

HUGE quaker oats recall in the US, affecting dozens of different products

quaker oats is recalling dozens of types of quaker bars and cereals due to salmonella contamination with various best before dates in 2024 and all earlier dates. <- YIKES!!! this was not just one or two batches! this has been going on for a while!

check the FDA link to look for the whole list of products but it is long. this is a colossal recall.

this recall is so big that quaker oats has a website dedicated to it. check out the website to get reimbursed.

www.quakergranolarecall.com

check your pantry!

#spoonie #chronic illness #disability #recall #USA #food #the Quakers woke up and chose violence #I'm a Quaker so I'm allowed to make this bad joke

[spoonie-living]

!!!

How do you deal with going to events with catering (that wedding, presumably) with your very strict dietary requirements? Do they accommodate? Do you bring your own plate? Do you just sit there? If you just sit there, do you do it with a plate of food in front of you, or no plate, or empty plate?

It depends on the wedding, but often, I'm too hard to cater to unless it's being hosted in someone's home, and they're cool with me bringing stuff.

Most venues won't let you bring your own food. The last time I asked why, they told me it was a health and safety issue--which, having worked in catering, I get--I just find it deeply funny, considering if I ate their food, I'd be going for an expensive trip in the wee-woo wagon to the nearest ER. (Not even Disney feels comfortable catering to me, and Disney is ridiculously good about accommodating allergies. The last time we went, I brought a packed lunch into the fancy restaurant and got a thumbs up from Mickey.)

Usually, I'll sit with food in front of me and not touch it. If there's a menu, I tend to get the opposite of whatever @mothman-etd is getting so he can sample both dishes. If I'm sitting with people who don't know me, they tend to leave me alone, but if they ask why I'm not eating, I just say, "Oh, I've been ill." or something to that effect. Usually, it's enough to make people not want to ask more.

If they do pry, or they've heard from someone else that I'm "weird" about food, I'll explain that I've got severe allergies caused by an immune disorder, and the venue couldn't cater to me, but not to worry, I ate plenty before I came. If they keep being rude about it, I shut the conversation down as politely as possible. If that fails, I just stop engaging and pretend I can't hear them.

If they do know me, they know enough not to ask and just let me enjoy spending social time with them without making a big deal out of it. They know it's hard to be included in social interactions when so much of our society revolves around sharing food. It's nice to have people not make a big deal out of it.

#spoonie #chronic illness #disability #accessibility #food intolerances #dietary restrictions #ada #usa #legal #special occasions

[spoonie-living]

This is such a great bill, but please be aware of the limits and don't get your hopes up.

Anyway, while you're here, please consider taking a moment to contact your house reps and senators (Text "Sign PMOJLC" to 50409; this is Resist Bot, an easy and free tool) to tell them to support house bill 5408 and senate bill 2767.

More info:

https://www.congress.gov/bill/118th-congress/house-bill/5408

https://href.li/?https://www.congress.gov/bill/118th-congress/senate-bill/2767

there's currently misinformation going around tumblr about what the SSI marriage penalty is, so this is my attempt to explain it in plain language.

when you marry someone who is not on SSI, and you are on SSI, their income is counted as your income. your SSI will be docked according to their income from then on. if their income outstrips your SSI (maximum SSI is $914 a month as of 2023), you will be ineligible for SSI from then on.

if two people on SSI get married, their maximum SSI benefits are reduced by 25%. they no longer get SSI as individuals, they get SSI as a couple, which is 25% less money than individuals are eligible for.

collectively, these two processes are known as the marriage penalty.

some news outlets are currently (September 2023) incorrectly reporting a bill as removing the marriage penalty. this is false. the bill is changing the savings cap for married couples on SSI. the savings cap is the amount of money you are allowed to save in your personal account before being kicked off SSI. this is different from the marriage penalty, and outlets referring to them as the same are conflating two different laws that apply to SSI recipients. please do not assume based on mis-worded news articles that you can get married without losing your income and health care if this bill passes. you may be putting yourself in danger by doing so.

#spoonie #chronic illness #disability #ssi #invisible illness #social security #signal boost #marriage penalty #America #usa

[spoonie-living]

Some really important considerations these days, which I wish were not necessary.

A well informed autism self diagnosis is just as valid as a psychiatric diagnosis. Additionally, under the given circumstances it is safer, most probably less expensive and you don't need to wait for any appointment.

10 screenshots from a twitter thread by @devprice with white text on black background.

The thread reads as follows:

I hear from many trans & nonbinary people who are actively seeking an Autism diagnosis. My advice is RETHINK THIS. Restricting Autistic people's access to gender affirming care is a major TERF talking point. As legal attacks on trans healthcare mounts, a psychiatric dx is a risk

The high overlap between Autism & transness was one of the main "concerns" JK Rowling rose in her "TERF Wars" blog post. Numerous fearmongering anti-trans articles influenced by TERFs have raised the issue since. if youre trans now is not a good time to seek a formal Autism dx.

An Autism dx does not unlock access to any beneficial therapeutic treatment, bc there is no "treating" Autism. Formal diagnosis makes us vulnerable to legal & psychiatric control and gets our competence challenged -- you dont need to subject yourself to this. diagnose yourself

I am close with dozens and dozens of Autistic people, and I have no idea who has a diagnosis and who does not. It does not matter. There is no reason to ask, no reason for others to care how someone identifies and how they arrived there -- all that matters is community support.

also if you cannot afford to pursue a lengthy & expensive lawsuit, it's unlikely a formal diagnosis will actually protect you from discrimination at work, in school or in housing. if you have the means great, but most don't. disclosing disability can be more risk than its worth.

if you need a dx to access resources such as disability benefits or extra test time, by all means go for it, but be cognizant of the potential costs. you could be denied for surgery, lose control of your assets, be found legally incompetent, lose custody of your kids...

Tweet replies to this thread:

By Greysquirrel @/treerat93

My autism dx was forced on me at age 2 and kept me out of the military in my 20s. It’s been nothing but destructive. I was beat up in sped and believed myself to be stupid my entire life because of it. I can’t even buy life insurance.

By Emily Johnson @/emily_rj

In some states, people with autism face being denied organ transplants, are at higher risk for forced sterilization and/or denied contraceptive and reproductive care, and have a higher risk of police brutality I considered this and decided informal diagnosis was best for me

By AK Faulkner is sweet and...

In the UK, an autism diagnosis is already a significant barrier to gender-affirming care. The GICs automatically try to discount dysphoria as autism during your initial assessments with them. If you arrive pre-diagnosed with autism they write your dysphoria off as that.

#autism #ableism #trans #gender affirming care #transphobia #advice #ableist violence #content warning #major content warning

[spoonie-living]

jo reblogged a [video] about pullups from a blog called hybridcalisthenics and someone was talking about how nice it is that they're completely nonjudgemental about starting from actually-zero.

I poked around their page cuz I enjoyed the video and they actually have an entire [video] that's just about hey it's not normal to be tired all the time, the solution is different for everyone and sometimes it's not simple or easy but it's important to remember that being tired isn't just normal. and that fuckin rules? that fuckin rules. that is an absolutely incredible degree of awareness and empathy from like, anyone? especially someone who's running an entire fitness blog.

so that's cool! nonjudgemental fitness blog that actually does break down exercises to a degree that if you've got most of the associated limbs you would probably be able to at least try it.

(they haven't posted since november but they also have a youtube channel they occasionally link to.)

#spoonie #chronic illness #disability #fitness #blog #review

[spoonie-living]

ENTIRELY forgot about this article from before the pandemic, which is probably becoming more relevant with the influx of Long COVID patients into our community. Welcome, y’all, and... sorry.

[Image: a young person with black sporty tee and ripped black jeans lying on the ground with knees bent, looking at the sky. Source: Khusen Rustamov]

So You’ve Got POTS

A Starter Kit For The Newly Diagnosed, Suspecting, and Self-Diagnosing

I’ve had POTS for [checks watch] five years now, and while sending advice to my newly-maybe-diagnosed cousin, I realized that I have just a pile of info, suggestions, and resources! So I’ve compiled them all here for all of those new to the POTSy life.

Right now a lot of this post is from my own experience, with a moderate case of POTS, based on information I’ve gleaned or received from my doctor. I could be wrong, or I could be off-base; this is just what I do or have done.

Folks with POTS, please feel free to give me your input! I will update this post as it is received.

❤, Editor Diane

Keep reading

#spoonie #disability #chronic illness #pots #long covid #repost

[spoonie-living]

Ok so at this point I've had two people roll up to me in manual wheelchairs, well, one of them was somebody pushing somebody who was nonverbal at the time, but it still counts. They asked me why I had zip ties around my tires.

It's winter where I'm living and we have really bad snow. And the snow plow people are really bad at their jobs probably because there aren't snow plow people who clean sidewalks. As a solution I got to thinking about how I could increase the traction on my wheels. And the most redneck thing I could think of was taking a bunch of zip ties and tying them around my wheels. They last surprisingly long, and work surprisingly well. It's basically the same premise as chains for your tires during the winter.

I chose to space them out pretty evenly so there's about one for every spoke. You could probably do more or less depending on how many you want and how much traction you get but I wouldn't go more than three per spoke. I realize that it's a bit later in the winter, and I probably should have made a post about this sooner, but I came up with it about a week ago. So please share this, even if you're not disabled, because there are tons of people I know who are stuck in their houses because they can't get around in the snow. A pack of zip ties costs about $5, which compared to $200 knobby snow tires is a big save, and if you want to invest you could get colored zip ties.

#spoonie #chronic illness #disability #wheelchair #mobility #snow #traction #diy

[spoonie-living]

I’d like to take a moment to boost a good friend’s work, both because I like her and because it’s really good. The main character has EDS and also aspirations of becoming a serial killer, and she struggles with actualizing that because of, you know, the constant subluxations and dislocations and pain.

Here’s my review from Goodreads:

Amazing representation, and a book and protagonist I couldn't tear myself away from! This is a really excellent, high-tension story with a delightful cast. The details are unsettling but all fit together into a coherent narrative; none of the violence and gore is gratuitous or there for shock value. The writing is fantastic. But what really gets me is that I can see my experience reflected in this story. Am I a serial killer? No. Do I want to be? No. But we all know the power of seeing yourself in media, and something about seeing myself in a genre I don't even belong in is amazing. Although I don't struggle with whether I can successfully carry out a murder and the extra, mundane logistics required to do it with a disability, I struggle with other things in my life in the same way. Things I can't do, or worry I will lose the ability to do. Having to think everything through extra, bring medical accessories, cancel on people. There's something amazing about seeing that in a totally different context. It makes me and my experience more real.

Anyway, I really liked it, and I think a lot of us could use a story like this.

(Also a lot of people could maybe not. Be careful with yourself, as this story is really gory and uh... well, it’s about a serial killer, kind of what it says on the box.)

Another Elizabeth on Amazon

Another Elizabeth on Books2Read

...or email Elle directly at [email protected] if you’d like to avoid buying from a large company :)

Elle Mitchell’s Author Page

#spoonie #eds #ehlers danlos syndrome #disability #representation matters #book #recommendation #serial killer #media #spotlight

[spoonie-living]

PSA: US Medicare does not cover IUDs or implants

[ETA: since it's an easy mistake to make, this is MediCARE, the one for people 65+ or disabled on social security. MedicAID is the state one for low income, and also I think coverage stuff is decided at a state level rather than a federal level.]

Hi, folks. I'm coming out of my long-term hiatus to make sure this gets around. From what I just heard, Medicare does not cover IUD or implant birth control. In fact, it was sheer luck that I found out about this ahead of time and not after I had already had the procedure done and gotten a surprise bill.

I have a Medicare Advantage plan (Regence), and they simply follow medicare's guidelines around this. It sounds like maybe a few Advantage plans out there have coverage but it is absolutely not guaranteed.

This news absolutely blew my mind. I'm so shocked and appalled that the rage hasn't set in. But I knew I needed to get this out there for all my fellow spoonies on social security.

The good news is that planned Parenthood, gods bless them, has programs to help you afford your IUD or even get it for free.

#spoonie #chronic illness #disability #medicare #birth control #family planning #insurance #IUD #contraception #psa #United States #usa

[spoonie-living]

Certified funny guy Brian David Gilbert just dropped a fantastic video about American health insurance. It's both hilarious and informative, and worth a watch whether you know about this stuff or don't.

Only reservation is when he talks about Medicare he kinda forgets disabled folks use it in addition to older folks 🥲

Still, a heck of a resource!

#spoonie #disability #invisible illness #chronic illness #insurance #resources #video #youtube #america #american health insurance #healthcare

[spoonie-living]

[ID: text on bright yellow background: "find foods you can eat 😋"]

Folks, if you live in the US*, have dietary restrictions, and struggle to find safe groceries, you HAVE to know about this app.

You can put in your restrictions (and their ingredient lists are extremely exhaustive) and this app will spit out a bunch of products that are safe for you to buy! Or it can scan a product to check for you!

Features of note:

Lets you mark whether an ingredient is safe, dodgy, or unsafe

Scans barcodes and tells you if a product is safe (you know how easy it is to miss an item in an ingredients list)

Lets you search and sort by product type (meat, frozen, etc)

Tells you what stores you can buy them at (most major chains)

Lets you create lists of saved items

Their paid version of the app also gives you access to a restaurants feature, which is small but currently being built out.

This app opens doors in major, major ways. I just ate chicken nuggets for the first time in 5 years, and found some premade meatballs too!

This one is definitely worth checking out. And if you have money to burn, consider upgrading to a paid account or donating a paid account—these people are doing important work, both in making the app and in some lobbying they're doing for ingredient transparency.

Enjoy!

*Looks like they want to expand to other English speaking countries soon.

#spoonie #chronic illness #disability #dietary restrictions #sibo #app #ios #android #food

[spoonie-living]

PSA

If you have an iPhone and other Apple products like iPad and a VP shunt or any programmable brain shunt, your phone has magnets in it that can accidentally change the settings of your shunt and cause medical issues! It can also happen with pacemakers.

My friend recently tested it with her doctor by holding the phone up to her head after they found her settings had be changed unknowingly and the phone changed her shunt settings.

If you have a programmable shunt or pacemaker and use apple products, please consult your doctor.

#spoonie #chronic illness #disability #shunt #pacemaker #vp shunt #brain shunt #psa

[spoonie-living]

Coming out of deep hiatus to share. Full list—they work for a lot of brands:

Lyons Ready Care

Lyons ready Care 2.0 High Calorie High Protein Nutritional Drink: Butter Pecan, Chocolate, Vanilla

Lyons Barista Style: Almond, Coconut, Oat non-dairy beverages

Pirq Plant Protein: Decadent Chocolate, Caramel Coffee, Golden Vanilla, Very Strawberry

Glucerna Original (sold only at Costco, BJ's and Sam's Club): Chocolate, Strawberry, Vanilla

Aloha Plant-Based Protein: Chocolate Sea Salt, Coconut, Vanilla, Iced Coffee

Intelligensia: Cold Coffee, Oat Latte

Kate Farms Pediatric Standard: Vanilla

Oatly: Oat Milk Barista Edition

Premier Protein: Chocolate, Vanilla, Cafe Latte

MRE protein shakes: Cookies & Cream, Chocolate, Salted Caramel, Vanilla

Stumptown Cold Brew Coffee With Oat Milk: Original, Horchata, Chocolate, Cream & Sugar Original

Imperial: Med Plus 2.0: Vanilla, Butter Pecan

If you have any of Lyons Magnus’s beverages, do not drink them, as 53 different products have been recalled due to potential for bacterial contamination of Cronobacter sakazakii.

This applies to, but is not limited to - their Oatly Oat milk, Premiere Protein Shakes, Aloha plant-based protein shake, and Intelligentsia.

This applies mostly to their products distributed nationally in the U.S., with few internationally exported goods - ranging from those with november 2022 to august 2023 expiration dates.

For more details and specificity, I recommend checking the full list in July 29, 2022 FDA recall page of Lyon Magnus Drinks here

#spoonie #chronic illness #invisible illness #disability #nutritional drinks #recall

[spoonie-living]

https://www.tiktok.com/@tylerandhistummy/video/7086509725671722286

Video description and transcription:

Tiktok by Tyler from Fig (tylerandhistummy)

[Tyler faces the camera and speaks to it.]

If this video helps even one person, it was worth it.

So, I've got a ton of ingredients that my body reacts to: corn, citric acid, gluten, chocolate, bananas, peanut oil--I'm all over the place.

It was so hard to read ingredient labels and just find food that I could eat. Grocery trips were unbearable, they took like two or three hours usually.

But I always had this idea on how to make it easier. So I quit my job and helped build an app over the past few years. And that app's called Fig.

[A phone screen showing the app interface, which Tyler scrolls through. Top text reads: "First up: Do you follow any of these diets? Dietary restrictions are complex - it's ok to select more than one!" Underneath is a checklist of ingredients and dietary restriction, including categories with suboptions.]

What makes fig unique is we're trying to help pretty much everybody that has to avoid certain ingredients.

That means we've got a ton of things that you can select from--even really specific ingredients.

[Camera briefly returns to Tyler's face again.]

And like I had dreamed of for so many years, checking ingredients is as quick as this.

[A phone camera scans the barcode on a bottle of spices. Details about the product appear, including an ingredients list and allergen statement. The ingredient "citric acid" appears in red all-caps. There is also an accompanying message that says "This product does not match your Fig."]

And finding food you can eat is as simple as this.

[The app displays a scrollable list of food items, similar to a storefront. Each item has a save toggle and is accompanied by a photo, the product brand/name, and its size. There is a search bar labeled "search for a product." There are also menus for narrowing the search; one is set to "allowed," one is set to "Whole Foods," and another unaltered menu is titled "Category."]

[The camera returns to Tyler.]

So if you know anybody with food allergies, stomach issues, other dietary restrictions, I'd really appreciate it if you shared it with them.

[The appstore listing for Fig: Food Scanner & Discovery.]

It's called Fig, it's completely free, and you can get it on iOS and Android in the US.

[Tyler smiles at the camera.]

Thanks for helping out.

#chronic illness #spoonie #disability #invisible illness #food allergies #food intolerance #app

[spoonie-living]

Oh, so nice to see a good option pop up after the loss of Stimtastic 🥰

FlappyHappy is a small business that has been started. It is run by autistics. Our goal is to make stim toys affordable and accessible to those that need them.  Many places that sell stim toys are focused on the needs and experiences of parents of young autistic children.  Here at FlappyHappy, autistic needs and voices are centred over caregivers. Our stim toys are also great for people living with trauma, ADHD, chronic pain, anxiety, or other needs! 

As a small business, we could use your help to get the word out and get started. 

If you can’t afford to purchase from our shop, you can still help by tagging us in social media (the links to all of them will be at the bottom of this post). You can also help us by sharing our social media posts whether that be on our Tumblr platform or other ones like Twitter, Facebook and TikTok. 

A lot of our success will depend on being able to get the word out. 

We will be using the proceeds of sale to expand our product line to bring you a variety of quality, affordable stim toys. 

Links here:

Our Website | Our Facebook | Our Twitter | Our TikTok | Our Instagram

#spoonie #actually autistic #stimming #stim toys #actually adhd #online shopping

[spoonie-living]

Seeking diagnosis on damage from binding (& dealing with internalized ableism)

hopelesspyromaniac asked:

Hey, I have a problem. I’m transgender and I used to bind my chest in some less-than-healthy ways. This caused severe chest pain and shortness of breath, that I still experience now even though I haven’t bound in years. I’ve seen a doctor about it, and went to the ER over it a year or two later, and I have another appointment scheduled in a couple months. So far, nobody has given me a way to treat it, or even a solid diagnosis. I’ve been told it looks similar to costochondritis but that’s it, nothing more specific. 

My questions are:

How do I find a way to possibly get an actual diagnosis?

If it’s actually not something we have a name for, how do I treat it?

How do I convince myself it’s okay to call myself disabled even though I don’t have a diagnosis, not even a self-dx

Thank you!

Oh, that sounds very sucky, and doctors are really terrible about more niche chronic conditions. I’m so sorry you’re dealing with this!

I’m afraid I don’t have specific advice about this issue, but I’m hoping our readers do. Does anyone have experiences to share?

Some more general advice from my experience, under the cut:

How do I find a way to possibly get an actual diagnosis?

If you haven’t looked for doctors who specifically work with trans clients, that would be a good start.

If you haven’t already done so, join some trans groups online and ask around. The best way to find your diagnosis when the doctors are sitting on their hands is to see what other patients have been diagnosed with.

Check out our Dealing With Doctors tag for ideas and info on navigating this shitty system.

If it’s actually not something we have a name for, how do I treat it?

That’s a tricky one. Although you can’t get to what’s perhaps the core of the issue, you can still use band-aids. That might be things like painkillers, heat/ice... not sure what to do about the shortness of breath, but there may be general remedies out there. I think there’s some empowerment to be had when you make a point of listening to your body and learning what you can do for yourself.

How do I convince myself it’s okay to call myself disabled even though I don’t have a diagnosis, not even a self-dx

Get back to basics! What does the word disabled mean? It means something has caused you to be unable to do something. From a functional and linguistic perspective, it sounds like your condition has disabled you. So yes, of course you can use capital-D disabled!

People go their whole lives with mystery, undiagnosed illnesses. They’re still disabled!

Seriously, try not to let weird internet gatekeeping overshadow these really obvious truths. I know it’s really hard, and I’m definitely not shaming you for it.

When in doubt, please refer to this goofy guide we made.

#spoonie #chronic illness #disability #chronic pain #binding #internalized ableism #ask #reply #audience participation #trans