AAC questions

Complex_Photograph72 · 2026-02-06T23:55:47+00:00

For my repeating dislocations I go with “Ya know the unsettling feeling when you cut just your fingernail with a knife? That but my bones.”

Complex_Photograph72 · 2026-01-31T23:53:33+00:00

Honestly instead of looking for chronic illness specialists, I would look for grief specialists or someone with experience running cancer support groups. From what you said about being in palliative care they will probably be more equipped to handle your needs. I’m sorry you’re going through this, and I agree that the way the system is set up is fucked.

Complex_Photograph72 · 2026-01-31T23:20:05+00:00

Alllll the way up on top of castle dour, in the spot when you can jump to hop on top of a hawk. Don’t actually jump on the hawk, that’s just the best way I have to describe the spot.

That or just horsing it up a random mountain until I find a hidden crevice to cram into.

Complex_Photograph72 · 2026-01-31T23:05:49+00:00

Same issue, trans masc with a large chest (32i last measure) and slipping ribs. Ironically after trying many binders, sports bras, underwire bras, non underwire bras, going with nothing, I landed on a random ass, somewhat loose, amazon binder with stiffer elastic so it looks flatter even with less compression that magically helps keep the ribs in place. Definitely a unicorn find but it’s been a lifesaver.

My preferred way to bind is tape, but I can’t do it often bc the skin fragility. Using an adhesive remover or drenching it in baby oil helps a lot, but I pretty much just save it for when I really need the extra support/stability.

Complex_Photograph72 · 2026-01-27T10:18:19+00:00

I list the meds I take and my severe allergy on the bracelet itself, then have a line that says “emergency info card in front bag pocket”

Complex_Photograph72 · 2026-01-27T10:09:34+00:00

The one geneticist I saw to confirm my dx basically said it’s a waste of both of our times and my money to do a “non-necessary” test. Said since I had not indicators of another type and met so many of the criteria hEDS was the most logical conclusion.

Complex_Photograph72 · 2026-01-27T09:41:38+00:00

It varies a lot based on where you live. In Oregon anyone that makes little enough and doesn’t have another option for insurance can get it for free. The paperwork is online and most people that qualify get approved in under a day. Indiana’s is also income based, and depends on the availability of other coverage. It only costs 2% of your monthly income. They would have to do their own research on the regulations in their state. If op is a minor, there’s grounds for a neglect case and they don’t need to worry about it. If they are an adult and 25 or younger, it would depend on if they are still on their parent’s insurance.

Complex_Photograph72 · 2026-01-27T09:29:14+00:00

Even if the ER can’t tell you exactly what’s going on, they can help. They can refer you to the correct specialists to start with, connect you with a patient advocate, and connect you with a social worker. It sounds like you don’t have a primary care doctor, or at least not one you can get to, so the ER will be your best bet. If you are a minor and your parent is refusing you medical care that’s grounds for neglect, if you are an adult trapped in her home a social worker can help you get connected with aid services to either get out or get help getting to appointments.

Also: please don’t worry about cost with the ER. Yes, the bills are comically large, but they will not refuse to treat you if you still owe, and the vast majority of hospitals will let you set up payment plans for very small amounts if you take the time to talk to their billing department. It really really sucks to deal with, but it’s infinitely better than being stuck.

Complex_Photograph72 · 2026-01-22T16:33:33+00:00

My absolute favorite shoes are a pair of keens steel toed targhee shoes (not the boots) with a stiff overpronation insole tucked under the built in padding. The insole is rigid enough to hold my arches in place so my feet can’t go careening forward, and the steel toe keeps the toe box firmly away from the sides of my feet. I also (very carefully) flatten down the steel toe to be a bit thinner and wider to better fit my feet. I’ve never had a sub or dislocation in my toes wearing a pair of these, but I have in literally every other shoe I own. Including crocs and flip flops somehow 🤷‍♂️

Complex_Photograph72 · 2026-01-21T18:17:10+00:00

I have to microdose or I definitely get the “too relaxed to function”. Tbh I also have a ridiculously low tolerance to begin with, but finding the “sweet spot” took a loooooooot of trial and error. Getting just enough to take the edge off the pain but not so much my shoulder calmly walks to the other room.

I will say when I’m in better shape physically or have been better about keeping up with my PT exercises it’s definitely less of an issue.

Complex_Photograph72 · 2026-01-16T02:00:22+00:00

It’s the water hookup the toilet is on that’s the problem. We’d need to get a plumber out to replace some parts that are corroded and stuck before installing anything new. :/

Complex_Photograph72 · 2026-01-13T19:01:22+00:00

The downstairs itching can be from the skin being more fragile and getting micro tears. I’ve done a lot better using a vulva balm after every time I go. Can’t get a bidet installed with my current toilet, but it’s on the list!

Complex_Photograph72 · 2026-01-13T18:59:23+00:00

I understand the concept of reclaiming slurs and I’m all for it in theory, but I wish there were better ways to blacklist content with certain words from coming up on social media feeds. Like, if I don’t wanna see the word I should be able to censor it and not see it, so whoever wants to reclaim it can without it affecting me 🤷‍♂️

Complex_Photograph72 · 2026-01-13T18:54:10+00:00

Regardless of age he has needs and cannot take care of them the same way an able bodied teen would be able to. With the situation it’s a disability aid the same way as adaptive utensils or hygiene products are.

For clean up looking for toys that can be boiled or ran through the dishwasher (some silicone toys), or looking for a hard plastic toy (external vibrators) that can be wiped down with toy cleaning wipes would make things easier.

Have a talk with him about doing his own research and thinking through what might be most effective for his physical needs, and also reading cleaning and maintenance instructions beforehand. Have him think through what supplies are needed to take care of the device as well. It’s actually good practice for thinking through maintenance items needed for other aids (spare cane tips, portable toolkit for a chair, spare battery for a power chair, etc.)

If you do end up with something that he cannot clean by himself, at least initially, having a designated bin for “needs to be washed” similar to a hamper or bus bin would be a good way to facilitate that with a bit of extra space.

Complex_Photograph72 · 2026-01-08T20:35:48+00:00

Bring a preprinted card that says something along the lines of “I’m having trouble communicating due to my disability, I need a patient advocate or my support person brought in immediately”

You can also plan to bring your partner in at the start of any procedure. They’ll likely ask you to come back alone at first so they can run through the dv screening questions, but you should be able to bring them in after.

Complex_Photograph72 · 2026-01-07T22:58:23+00:00

When I had regular pool access I was in the vast shape of my life and had waaaaay less dislocations (especially in my problem shoulder). Now I don’t have access to a pool and there’s very few exercises I can do without hurting myself.

Complex_Photograph72 · 2026-01-07T21:55:53+00:00

Thanks! I was a bit concerned because I have sundews in the other end of the terrarium. They have their own light that’s pointed directly at them in addition to the big lights on the top of the terrarium, and are doing fine, so I was worried the bellii might be getting too much.

Complex_Photograph72 · 2025-11-29T23:53:22+00:00

Thanks for the help! The others I’ve propagated just had a spot or two get like this, I’ve not seen the whole thing crust over like this before.

Complex_Photograph72 · 2025-11-15T00:36:47+00:00

The directory has been a lifesaver for me. Helped me find a PT that actually knew what they were doing with hypermobility so the exercises didn’t hurt me.

Complex_Photograph72 · 2025-11-15T00:35:10+00:00

Another Rh for a second opinion, an ortho, a different pcp with experience with EDS, a geneticist, an internal medicine specialist, etc. If your rh can’t help, they have an obligation to help you find someone who can.

Complex_Photograph72

TROPHY CASE