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 Iāthere'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. I will also be closing the contact email for the spoonieliving.com domain, but you can find me through my professional site!
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.
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.
The Quaker Oats Company today announced the recall of specific granola bars and granola cereals listed below because they have the potential
this recall is so big that quaker oats has a website dedicated to it. check out the website to get reimbursed.
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.
Hey Joy, I'm sure you know this already, but for anyone who doesn't know:
If a venue cannot accommodate your disability-based food and drink needs, it is a violation of the ADA for them to refuse to allow you to bring your own food and drink.
I have a stock letter/email I send to venues ahead of time for things like conventions saying, basically, "I have looked at your menus, you can't feed me without making me sick, so I'm going to need in writing from you that I can bring my own food, in compliance with the ADA, as well as a name and phone number for someone I can contact if security gives me any grief."
Then, I print out a few copies of the email and their response, and it goes into the Convention Binder with all the other event paperwork. I take it with me and have the number in my phone already.
"You can't bring this in."
"Actually, I can, because there's no safe food available for my disability here, and it's a violation of the Americans with Disabilities Act for you to try to stop me. I've already spoken with [name], and here's a copy of our conversation. Is this sufficient for you, or should I call them to confirm?"
In the US, you have a legal right to bring safe for and water into events or locations that cannot provide it for you. You do not have to present a doctor's note or other medical verification. They don't need your medical records or even the name of your specific disability and they're not allowed to ask. You can choose to say "I have celiac disease" or "I have an autoimmune disorder" or "I am diabetic" or whatever but you don't have to and you shouldn't be pressured to do so.
The right to safe food and drink is ABSOLUTELY covered under the ADA. Don't let places bully you.
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.
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.
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. Itās been nothing but destructive. I was beat up in sped and believed myself to be stupid my entire life because of it. I canāt 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.
I've frequently encountered people who are like "well I want an autism diagnosis because I'll be more comfortable calling myself autistic if I have it confirmed officially" and while I'm not going to tell other people how to live their lives (I strongly believe in letting people make their own risk/reward decisions even if they choose what I think of as the foolish option) I do want to caution anyone who thinks that way to please check to make sure these feelings aren't bleeding into the way you treat other self-diagnosed autistic people
This is something to keep in mind with diagnoses in general. Having official recognition is important in cases you are seeking accomodations, disability, or certain treatments. But a lot of cases are like this where there aren't treatments, or the treatments are over the counter/diy friendly.
Sometimes if you have a good doctor they'll even let you try medication without it! My PCP was actually willing to let me try meds for ADHD without an official diagnosis! I am really grateful for that, especially since they ended up not working out, so if I had gotten the diagnosis just for the sake if trying them, I'd be subjected to additional ableism with no positive trade off! Not everyone will be that lucky, but it's worth a try before resorting to painting a target on your back.
missouriās trans healthcare ban specifically stipulates that someone needs to be screened for autism. fake it. mask as best you can. lie. do whatever you need to avoid a diagnosis unless you absolutely need accommodations to live.
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.)
[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 Youāve Got POTS
A Starter Kit For The Newly Diagnosed, Suspecting, and Self-Diagnosing
Iāve 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 Iāve 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 Iāve 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.
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, yāall, and... sorry.
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.
First image: a picture of a wheelchair tire from above. The wheel has five white zip ties spread out mostly evenly. The zip ties are situated on top of the tread.
Second image: A picture of the same wheel from the side. The zip tie knobs are pointing down towards the ground. They have been trimmed down.
Third Image: A picture of the same wheel, from a top down side point of view. There are zip ties all around the edge of the wheel, and knobs of the zip ties are all positioned to be on the inside of the wheel, away from the edges.
Here are some pictures for those that are asking! You wanna make sure that the zip tie knobs are facing to the inside of the wheel otherwise you WILL cut up your hands trying to move.
@spacecripple Wanted to make sure you saw this!
@bangtansboyfieyfies I'm not sure with a power chair but depending on the kind of wheels you have, you might be able to use larger zip ties. Anything can help! If you have an extra set of wheels, I know that some bikers will install their own studs (essentially screws) into their wheels, which might be useful for you!
Though many inclusivity trends and tropes have come and gone, I still crave to be seen as human, flawed, boring, horrible, funny, mean, smart. I crave disabled characters that are interesting for something other than their disability. I crave people. And so, I wrote Another Elizabeth.
Iād like to take a moment to boost a good friendās work, both because I like her and because itās 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.
Hereās 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, itās 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 youād like to avoid buying from a large company :)
[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.
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 š„²
[ID: text on bright yellow background: "find foods you can eat š"]
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 accountāthese 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.
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.
Oatly Barista Edition oat milk, Premier Protein shakes and Stumptown cold brew coffee are just a few of the recalled products
If you have any of Lyons Magnusās 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
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.
Fig is the fastest way to find food that works for you: Gluten Free, Dairy Free, Low FODMAP, Vegan, Food Allergies or just avoiding additive
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.Ā Many places that sell stim toys are focused on the needs and experiences of parents of young autistic children. Ā 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!Ā
As a small business, we could use your help to get the word out and get started.Ā
If you canāt 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.Ā
A lot of our success will depend on being able to get the word out.Ā
We will be using the proceeds of sale to expand our product line to bring you a variety of quality, affordable stim toys.Ā
Seeking diagnosis on damage from binding (& dealing with internalized ableism)
hopelesspyromaniac asked:
Hey, I have a problem. Iām 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 havenāt bound in years. Iāve 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. Iāve been told it looks similar to costochondritis but thatās it, nothing more specific.Ā
My questions are:
How do I find a way to possibly get an actual diagnosis?
If itās actually not something we have a name for, how do I treat it?
How do I convince myself itās okay to call myself disabled even though I donāt 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. Iām so sorry youāre dealing with this!
Iām afraid I donāt have specific advice about this issue, but Iām 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 havenāt looked for doctors who specifically work with trans clients, that would be a good start.
If you havenāt 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 itās actually not something we have a name for, how do I treat it?
Thatās a tricky one. Although you canāt get to whatās 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 thereās 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 itās okay to call myself disabled even though I donāt 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. Theyāre still disabled!
Seriously, try not to let weird internet gatekeeping overshadow these really obvious truths. I know itās really hard, and Iām definitely not shaming you for it.
When in doubt, please refer to this goofy guide we made.
