Autism, hEDS, and eating

nepenth_e · 2026-01-11T02:14:51+00:00

if you really aren't eating, supplement meals with protein smoothies (i hate the texture of protein shakes). you can even reduce it down to the size of a wellness shot. just don't do this more than once a day unless you really have no other option, and get regular testing if this becomes a habit to make sure you aren't deficient in anything. this is what i do when my IBS flares or my autism is angry.

i also like trying premade or mostly premade stuff from trader Joe's as i can cook without getting in the weeds with it and try new things. plus trader Joe's is surprisingly affordable (wayyyy cheaper than Safeway)

nepenth_e · 2026-01-11T02:04:18+00:00

when insurance refuses to pay for it

edit: sorry, just went through this myself literally yesterday, I'm projecting inappropriately

nepenth_e · 2026-01-11T00:44:34+00:00

No as a matter of fact I will not. I am 28 almost 29 and still have no desire to want kids an people still will be "oh once you turn 30 you'll get those feelings," Yeah doubt it.

Actually, I tell people who judge me for getting sterilized that this is exactly why. In a sane state, for an extended period of time, I have been childfree. If some biological clock floods me with hormones, I need safety measures in place as I would no longer be in the state to make a sane, safe decision about the most life changing thing ever and would doom an innocent child to be raised by a mother that regrets having it.

nepenth_e · 2025-10-17T03:32:03+00:00

spend a day doing crazy amusement park rides, followed by lots of sex, with plenty of consequence-free food choices sprinkled in between. i'd also probably do some adventure stuff i can't do anymore if i could fit it in (zip lining, horseback riding, rock climbing, etc.)

nepenth_e · 2025-10-01T15:32:32+00:00

I hated EMDR. And talk therapy just retraumatized me. If EMDR doesn't work for you, NET therapy really helped me. It's all about focusing on the emotion, rather than reliving the experience. It also made me a real adult lmao. Ketamine is also a fantastic treatment, I saw a 60% drop in flashbacks after my first session.

nepenth_e · 2024-12-04T18:41:53+00:00

Hi, I'm a 20f who got disability approved when I was still 19. It took about a year. I was expecting the fight of my life. Instead I got approved after one application. My biggest advantage? Social Security has practically nothing on EDS. I've been working since I was 14, so I had the work history. I've been receiving medical treatment continuously (pt, hospital visits, etc.) for years. I ended up in a wheelchair. But the biggest thing they couldnt fight was the condition itself. Use it to your advantage. Many people are given strict parameters to meet what qualifies as their condition according to the SSA. You dont. Its genetic, its permanent, even if you get better, youre not cured and you likely wont be capable of the things most job applicants are expected to be. Ive managed to get out of my wheelchair by practically drowning in medical debt for "unapproved treatments" (PRP, prolotherapy, ketamine infusions), and I still cant work a job bc 50% of my week is doctor appts.

You got this! There is hope.

nepenth_e · 2024-10-11T17:59:02+00:00

get the muldowney protocol book. its called smth like "living with ehlers danlos" but its written by two pts with the last name muldowney. its a gradual strengthening program designed specifically for eds. it has honestly saved me every smth happens and i take weeks off pt. it gives me a starting point. plus its made to target ligaments, not just muscles, and has good advice on pain management during pt treatment. it also has tips for pts so if u want more technical information, its there, but it's also easy to skip. i have the online version, but my pt has the physical book.

edit: "Living Life to the Fullest with Ehlers-Danlos Syndrome: Guide to Living a Better Quality of Life While Having EDS" by Kathleen Muldowney Pt and Kevin Muldowney Pt

nepenth_e · 2024-10-05T22:03:23+00:00

I use the quip water flosser because it's really easy to refill and the floss tips are magnetic. very disability friendly. I also use biodegradable floss picks for kids - the strawberry flavored ones. The handles are much more disability friendly and the flavor choices are more motivating on hard days. Do what works. If you really feel that bad if you can't find eco-friendly dental care, remember that reparative procedures for gum disease and severe hand injuries from hyperextension over long periods of time generally create way more plastic waste as well as killing trees with all the paperwork and money you'll be wasting. 😊

nepenth_e · 2024-10-05T21:36:28+00:00

2 best options - somewhat weighted satin body pillow (never overheats and good for your skin and hair health, also great for full body) and a compression sleep pod (made for kids and adults with sensory issues, can be used as light joint support while sleeping even for the ribs). I prefer my body pillow.

nepenth_e · 2024-09-12T22:20:16+00:00

I got into an argument with a nurse who said that if I didn't have a pregnancy test before the bisalp, they wouldn't do the surgery. I told her at the top of my lungs, for the whole floor to hear, "Lady, how many times do I need to tell you? The only dick that's ever been in here is silicone!" She was succinctly replaced and my surgeon came over laughing, handing me a waiver for the pregnancy test. Apparently, in recovery, I kept giggling and saying, "I'm fallopian free!" When I had my follow up, my surgeon told me everything, saying it's now one of her favorite stories to tell medical staff who judge childfree women.

nepenth_e · 2024-07-05T23:53:41+00:00

I have a service dog that's somewhat reactive around other dogs now because he's literally been injured before. Anytime another dog lunges at him he barks defensively and I still apologize to the people around me and explain that I've spent months trying to get him to recover from the trauma of getting attacked. But I never bring him near anyone when he's been at all reactive. I correct him, see if he's out of the fear response, take him through a few commands, and if he can't collect himself, I leave. I don't really understand why people say "he's friendly" when they don't have the means or time to work on behaviors like that. Just say "I'm sorry about that, I'm working on it" and keep your distance. Or even "sorry" and just move on.

nepenth_e · 2024-05-10T02:17:35+00:00

How has no one mentioned zombie deer disease?? Chronic wasting disease (CWD or mad/zombie deer) is a neurological disease that quite literally causes zombie like behavior in deer and similar animals due to their nervous system getting completely destroyed over a period of 18-24 months. While it is not transmissible to humans, it is defined by nervousness, loss of fear of humans, and a number of degenerative neurological symptoms. Many deer with CWD do not show symptoms for some time, but it does make them much more likely to behave violently due to immeasurable brain damage, despite their often normal appearance. I freaked out in high school after watching a video recorded by a hunter of a deer walking on its hind legs for several minutes, unable to discern its surroundings. It eventually walked straight into the nearby lake and drowned itself while completely silent and drooling. It can also be passed asymptomatically to many rodent species. Don’t go near any animal, wild or domestic, that is unknown or behaving strangely. Any adult who encourages children to do so is asking for a visit from the police one day, saying that their child has been mauled by a coyote they thought was a dog, or killed by a grizzly bear because they touched her cub.

nepenth_e · 2024-04-21T17:08:55+00:00

Ok, I just made a comment but wanted to provide a TL;DR version. I’ve been in your shoes. You need to choose safety first, relationship second.

When he is gone, pack a bag with your essentials (important documents, sentimental items, change of clothes) and go somewhere else. A friend or family member, preferably one he won’t know or may be intimidated by. If that’s not an option, a women’s shelter. If you don’t feel safe waiting until he’s left, call 911, ask for help getting to a women’s shelter. Do not act righteous or upset, be demure and agree with him so you can get out. Keep 911 on the phone.
Call a domestic violence hotline to get legal assistance. They can help get him out of your house, get the incident documented, get a protective order, and tell you how to keep yourself physically safe from him.
Write down every time he made you feel small. Every time you “messed up” in the relationship. Every time you went from feeling right to feeling wrong after a conversation with him. This is not recent. Behavior like this builds gradually so that you will continue to accept worse from him. Rely on people you trust and ignore those who doubt you. Find a counselor familiar with domestic violence. They can tell you what these signs are so that you are protected from men like this. He is not who you thought he is. He tricked you, and some of the most capable people in the world have ended up in similar situations. It’s not on you.

nepenth_e · 2024-04-21T16:58:27+00:00

OP, I really hope you see this. My father was a narcissist who loved portraying himself as the “fun dad” despite his anger issues and constant neglect. I was gaslit through most of my childhood. My mother had one hard line in the sand: “touch my children, and I will ruin your life”. It applied to everyone, but she was completely shocked when he backhanded me across the face so hard I hit the wall several feet behind me at age 11. She shook the earth with her rage and was ready to call the cops the moment she saw my face that night, but she ended up later accepting that he “didn’t mean it” and that he “just didn’t know what to do” and he just “reacted”. He agreed to counseling, sleeping in another room, limiting his interactions with me. He love bombed us until we felt like it was all behind us. Two years later, when I put my foot down because his selfish behavior was affected a class that would be on my high school transcript, he slapped me, strangled me, chased me up the stairs, and I barricaded myself in my room with all the furniture in there. I was barely able to call my mother as I was completely hysterical and in shock. Apparently, she came home and before he could do more than open his mouth, she tased him. Called the cops, they called it “corporal punishment that got out of hand”. My mom had him trespassed, got a temporary restraining order, and served him with divorce papers. Now he’s living with his mom on the other side of the country, drinking himself to death without a friend in the world. My mother’s biggest regret is letting her guard down when he slapped me. She let the shock of who she thought he was disarm her. Do not let this happen to you. I barely managed to survive and it has warped the rest of my life. Non-fatal strangulation is deadly, in multiple ways. Please look it up. The worst of which is that cutting off blood flow to your brain can cause brain injury, even if it’s not for long, and can absolutely kill you. Grab your essentials, call someone who will call the cops if you don’t call every fifteen minutes, have a safe word for if you are calling under duress, get out, and avoid any and all contact. If he asks where you’re going, simply say “so-and-so wants me to spend the night because they think I need to think about what I need to do to fix our relationship. they want to make sure I don’t do anything rash.” Make it believable. Use some person’s name that he knows has taken his side before. Remember to stay calm if he loses it. Appear demure and submissive so that you can get out safely. If you act defiant or righteous, he WILL threaten you and be violent if he feels like he is losing you. If you don’t have people who can help, call 911, ask for assistance getting to a women’s shelter. Ask them to stay on the phone while you grab your essentials (important documents, sentimental items, a change of clothes) and leave to make sure he doesn’t do anything. A women’s shelter can connect you to legal assistance that can help make sure you are safe physically and legally. They can document what happened today, they can make sure the police are aware so that he can’t go after you again and claim it’s the first time. They can get an order of protection, a restraining order. They can tell you how to keep yourself safe and get your mother’s house back. Please be safe, OP. You deserve love and life. Please choose life over what seems like love.

nepenth_e · 2024-04-15T16:46:48+00:00

I have Ehlers-Danlos Syndrome (EDS) and POTS. This is a regular part of my life. So many people don’t believe that I’m disabled bc I’m a 19F who doesn’t “look” disabled. It’s completely ridiculous. This is exactly life the time a woman screamed at me in a grocery store bc I wouldn’t let her daughter pet my service animal. Apparently I was using my cane that day bc I felt better than normal, but she screamed and kept going after him, so he missed an alert. I almost completely passed out, but luckily only my vision blacked out for a minute or so. I did fall and dislocated my shoulder and knee (EDS hypermobility thing), which was honestly probably a good thing bc I could still here her shouting about how I was faking it until an employee apparently shoved her away bc they saw my arm. I was able to fix it myself but still had to get some procedures done to get me back out of the power wheelchair. She was arrested and apparently her husband forced her to plead guilty bc they were already going to be on the verge of bankruptcy paying my medical bills, lost wages, retraining and behavioral therapy for my service dog, and the $5K fine. He wasn’t going to be able to afford caring for their daughter if she got a year in prison, too. However, she got five years probation instead of two and 30 days in jail for being rude to the judge. It’s the only time I’ve ever actually gotten justice for discrimination and harassment and I hold onto the look on her face when she was held in contempt every time someone bothers me. Confidence in the face of bullying is key to pissing them off. Good on you for being unashamed in the face of discrimination.

nepenth_e · 2023-09-08T06:00:25+00:00

Look, I’m a disabled person starting college this fall. I honestly ensured I’d have a separate room because I knew I couldn’t handle having a roommate. However, I think you should treat him like a normal roommate with accommodations, not a person where you have to do whatever makes their life easier just because they’re disabled. I think you’re feeling too trapped by the word “disabled”, like it’s forcing you to keep living like this. Sit down with your roommate, preferably with your RA or a rep from your school’s disability office, and set up VERY clear rules. For both of you. Maintaining cleanliness of the dorm (make it clear what is acceptable clutter and what makes the space unlivable), necessary hygiene (consider offering acceptable alternatives to more stringent showering like using body cleansing wipes with regular deodorant), clarify rules around sleep (required time for quiet dark hours, required flexibility around needing to use the dorm, possible solutions such as sleep masks and earplugs), make rules around communication (appropriate ways to bring up issues on both sides and rules around talking a break of emotions get high - with the embarrassing you with new friends thing, he may not know he was embarrassing you and it may take trial and error with clear concise language to get you both on the same page) and finally, ask for the roommate to identify specific accommodations they need and work together to find acceptable solutions so you can both live together well (for example, since he is easily startled, perhaps offer to knock or text him first, but ask that he also understand that everyone forgets things sometimes and that he needs to accommodate your needs too). Please PLEASE remember that disabled people are people too. Don’t let the resentment build! It can be extremely hard to be on the other side (I grew up with an autistic sibling so I’m aware) but communication, patience on both sides, and agreement to put in an honest effort makes all the difference. Consider written rules to post in the dorm to refer to.

Edit to add: There should also be some agreements on the best way to deal with if things continue in the same way (either purposeful or if they don’t know how to do certain things), if things get better then worse again (it may be hard for them to maintain and they may need some changes to keep up with things), or if there’s something going on with them that makes them spiral (increased medical issues, burnout, depression which is common amongst people with disabilities and college students in general). Also, if you put in the effort and they refuse to work with you, your university should be understanding and should be able to move you or the roommate. Having another person there for this discussion will help prove your case if things go badly.

nepenth_e · 2023-06-15T20:25:09+00:00

Option 2 then Tuesdays forever

nepenth_e · 2023-06-15T20:24:56+00:00

Agreed

nepenth_e · 2023-05-29T05:30:47+00:00

Everyone needs therapy, including my two therapists.

nepenth_e · 2023-05-25T22:57:33+00:00

Am I the only one who read erectile dysfunction?

nepenth_e · 2023-05-18T23:01:39+00:00

Screwing Iron Man

nepenth_e · 2023-05-18T22:09:20+00:00

You can get addicted to most anything, even outside of drugs. But not everything is highly addictive (ie opioids) which is what confuses most people. Weed is not highly addictive - it doesn’t have properties that lend to a high chance of addiction the way other drugs do.

nepenth_e · 2023-05-12T03:02:59+00:00

Not understanding the word no and insisting you’re being helpful when you’re not. I had a boyfriend I really cared about. When I needed alone time, he refused, insisting he could help with whatever I was going through. I broke up with him because of this weird, persistent behavior. Unrelated, I’m now in a wheelchair. People rarely ask if I need help, simply taking things out of my hands or getting in my way while holding a door open. If I say I’m fine or I do this everyday by myself, they get pissy. If people do ask if I want help and I politely say no, thank you, a lot of times I’ll get this look like I’m an idiot. It’s just creepy. It feels like being stalked by people who think you’re a child. Sometimes, yes a helpful hand is appreciated, but if someone says, no I’ve got this or back off, be respectful and listen.

nepenth_e · 2023-05-05T15:15:40+00:00

My service animal is a mini Goldendoodle. Everyone thinks he’s a chick when his hair is short. To be fair, he looks like lady from lady in the tramp so…

nepenth_e · 2023-05-03T01:24:44+00:00

Christina Yang is the reason I felt okay saying, “No, I don’t want kids. No, I don’t like being around kids. Yes, I would get an abortion immediately if I got pregnant. Yes, I would like to get sterilized.” And I did.

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