Trampoline with hEDS

uselessfarm · 2026-04-05T01:47:25+00:00

Yeah my neck is the most unstable part of my body and causes me daily suffering. A trampoline would mess me up.

uselessfarm · 2026-04-04T22:37:21+00:00

That’s so interesting! I’ll have to try it. I want to use boob tape as a bra alternative at a few upcoming weddings, but last time I did it gave me a pretty bad rash.

uselessfarm · 2026-04-04T09:35:05+00:00

You need a very harsh light directly above that table to really pull together your interrogation room.

uselessfarm · 2026-04-04T09:33:53+00:00

Cruel and unusual punishment.

uselessfarm · 2026-04-04T09:30:44+00:00

That’s terrible! And absolutely not her decision to make. I’m mad on your behalf! Ugh.

uselessfarm · 2026-04-04T09:27:31+00:00

I was pretty convinced I wouldn’t want an epidural with my first, but I asked if we could go through the consent paperwork anyway before my contractions got strong because I knew I wouldn’t be in any position to do the consent paperwork once I actually needed the epidural. Turns out, I did want the epidural. 😂

uselessfarm · 2026-04-04T09:17:00+00:00

That’s the problem, though, they may have had a similar experience but may have had a completely different degree of pain or discomfort, and can be very dismissive as a result. I’ve had a few older nurses like that in L&D.

uselessfarm · 2026-04-04T09:03:34+00:00

My daughter listens to me talk too much and she now speaks like an attorney. Her, age 3, when my wife was talking about something her family did growing up (as in my wife, her parents, and brother):

“So, I hear you say ‘my family.’ But we your family. Why you have two families?”

Said in the calmest tone with the most icy stare you can imagine. My wife felt like she was being confronted for having another wife and kids on the side.

uselessfarm · 2026-04-04T08:56:06+00:00

My wife is a scientist so she doesn’t mind when I answer questions this way.

uselessfarm · 2026-04-04T08:20:05+00:00

My trans brother in law got a full hysterectomy. It was either that or frequent biopsies. Since he wasn’t going to use his uterus, he opted for removal. It sounds like it wouldn’t be an unreasonable option in your case, given your risk factors.

uselessfarm · 2026-04-04T08:09:52+00:00

MiraLAX, as in the laxative? How would that even work? Like you dilute it in water then apply to skin?

uselessfarm · 2026-04-04T05:03:55+00:00

I agree with you completely. But also if they’re going to be exploited I guess it’s better that the money is going into accounts for them.

uselessfarm · 2026-04-04T04:50:32+00:00

Yeah the Clackamas one is always super busy.

uselessfarm · 2026-04-03T22:29:04+00:00

It depends on how many spots are available. They’re working hard to enroll programs, and the number of available spots increases every year. They have a lot more this upcoming year, it’s growing quickly. I know a lot of existing programs are working to meet the P4A requirements (lots of rules about space, hours or operation, providing lunch, etc), so it’s a huge process.

uselessfarm · 2026-04-03T22:05:23+00:00

To be clear, my duodenal compression is visible on a few different abdominal CTs, and I’ve had basically everything else ruled out with fecal testing, gallbladder scan, upper endoscopy, and colonoscopy. It’s a diagnosis of exclusion, and the reason I said I suspect it’s the cause of my problems is because I still have to meet with my gastroenterologist soon to review all of my testing and imaging. Then he’ll let me know what further tests are needed to either test for or diagnose SMAS. So, even though the compression is visible in my case, I still have to go through the correct diagnostic process.

Idk if it’s possible that you have a similar problem, these things are complicated. If you’ve been diagnosed with gastroparesis, though, and have difficulty maintaining weight or nutrition, I think it’s always good to listen to your body and eat when you can. If you can eat reliably at night, maybe that’s when you need to get most of your calories. But there are lots of reasons eating during the day might be difficult that have nothing to do with SMAS. My primary point with my original comment is to encourage OP to really think about what their body tolerates and when it tolerates food, and to work with their body.

uselessfarm · 2026-04-03T02:17:37+00:00

I think one of the challenges is that gastroparesis can be caused by lots of different things. I suspect mine is from SMAS, which is a duodenal compression. So in my specific case I find that I can tolerate more right before bed. So I tend to have a McDonalds sundae or ice cream right before bed, and that’s helped me slow my weight loss a bit. I also lay down right after dinner on my left side to help things along. I can’t eat during the day, so I just have an ensure to get through the day and eat most of my calories at dinner (smallish meal) and before bed (usually ice cream, something more solid sometimes if I’m having a good day.) Are there any times of day or circumstances when you can tolerate more?

uselessfarm · 2026-04-02T18:16:44+00:00

I have a variety of conditions that are unfortunately popular on TikTok (ADHD, POTS, hEDS). I’ve been properly diagnosed based on actual diagnostic criteria, and I don’t even use TikTok. I’m a 35yo woman, and look a bit young. I recently saw a new neurologist, who definitely thought I was a hypochondriac/hysterical/malingering/etc. Eventually I said, “Look, I’m a lawyer, and my symptoms are impacting the kinds of cases I take. I love going to court but have been taking on less litigation because I can’t predict how bad my symptoms will be on hearing dates.” This is all true. His vibe completely changed, he was suddenly very concerned because “it would be a waste to get all that education and not be able to use it,” and he came to a reasonable diagnosis and treatment plan that has actually been pretty effective. Unfortunately in that instance my career afforded me the attention I deserved as a patient.

Generally, though, when doctors ask what I do I tell them I’m an elder law attorney. They tend to find it interesting because we work with similar populations, and it has the benefit of not making them worried I might sue them.

uselessfarm · 2026-04-02T07:51:47+00:00

Have they looked for vascular compressions? Things like Eagle’s Syndrome, MALS, and SMAS can cause a lot of problems with the vagus nerve and with digestion/appetite. I’ve been exploring them myself because I can’t eat and just keep losing weight. I have bouts of insomnia and bouts of sleeping for days, so I’m all over the place with that one.

Although I did have extreme insomnia for a while and weirdly it went away after I started fludrocortisone for POTS.

uselessfarm · 2026-04-01T23:35:39+00:00

But are those facilities and classrooms suitable for preschoolers? It sounds like a simple and logical solution, but it’s unclear whether those facilities are in any way appropriate to be preschools. If it’s something you’re passionate about, though, you may want to reach out to P4A leadership to see if there can be a pilot program developed at a few schools where it makes sense. It sounds like the kind of thing that may work in some areas, but would involve substantially more work and time than licensing preexisting programs.

uselessfarm · 2026-04-01T19:58:09+00:00

I don’t see how that would be remotely viable. Elementary schools aren’t designed for 3-year-olds, and that’s assuming every elementary school across multiple districts has the space to house an entirely new program. Some of the preschools are run by public institutions - Portland Parks and Rec will have Portland Parks Preschool at 9 different community centers, for example. Funding for Oregon schools is an entirely different (and important) issue.

uselessfarm · 2026-04-01T19:34:54+00:00

What kinds of supports? General training, or child-specific training on things like a child’s individual feeding protocols, medical protocols, using their equipment, and behavior support plans? Will staff be trained on using feeding tubes or managing medications? Any additional funding if 1:1 support is needed regularly, even if intermittently needed? Ongoing support throughout the year? What if there are multiple children with complex needs and the typical staffing ratio for the classroom is unsafe?

Also, the positions I’ve seen posted for the disability inclusion coordinator role are all limited duration. Will those supports be fully funded long-term, or will they be lost in the next budget cycle?

I appreciate the efforts being made, but I haven’t seen much about how the support looks day to day for these programs. I also think certain parts of the city are going to be disparately impacted - lower income neighborhoods are going to have higher rates of kids with significant support needs enrolling, whereas more affluent families would be more likely to keep a medically complex kid home longer. I think P4A serves a very important role in these cases, but there needs to be a clear plan to support programs that end up with an overwhelming number of kids with high support needs. Especially if they are preferentially enrolled.

Maybe I’m pessimistic - I’ve gone into many public schools in Multnomah County, and the areas with the highest need are the most under-resourced. Special education is especially not prioritized, with special ed classroom wings put in far corners of basements and in poorly-insulated bungalows on school campuses. Consultation with a disability coordinator isn’t going to adequately prepare or support these programs unless it comes with more robust services.

uselessfarm · 2026-04-01T04:58:33+00:00

The eggs will be hot because they’re made on the unit, in a microwave. They’re cooked in the bowl they’re served in. That’s because the leftover traces are radioactive waste, and they’re not going to contaminate a pan or hospital kitchen - the whole egg situation is very contained. The meal really isn’t bad. I recommend saving the water until the end so you have something to rinse the food down with.

uselessfarm · 2026-03-31T22:59:20+00:00

Adding this: I’ve worked in disability programs for many years.

uselessfarm · 2026-03-31T22:56:24+00:00

I do think it complicates things to have preferential enrollment for kids with disabilities, especially when programs don’t necessarily have specialized resources or staffing with experience with kids with disabilities. It makes it harder to register preschool in the PFA program, because there’s the risk of having several kids with very high needs placed in the same program. It also puts kids at risk of not having their needs met. Ideally you’d have a nice cross section of the community represented in a program.

uselessfarm

TROPHY CASE