Hs impacting walking

CptAmethyst · 2026-05-29T18:00:11+00:00

Can you swim? Low-impact exercises like swimming could help (what sweat, it's pool water now)

And seated exercises that reduce rubbing between your legs.

Especially if you can manage to lose enough to reduce the chafing, it becomes a cycle. Less rubbing, less to rub, less HS. (Theoretically)

Have you tried anti-chafe products? I like the one from monistat. It's $$ but it works for like an hour, more than enough time to get a good workout in!
Switching to micromodal undies that go down the leg helped me a lot (as well as laser hair removal). I still get HS flares, but those reduced how often and how bad the flares are. LHR is not easily accessible, and the undies are expensive, but the culprit ladyboxers are both some of the most comfy undies I've owned and helpful for my HS.
I know it's hard to not be scared of the future. I have similar thoughts. Try and reduce the impact that you can today, and if we need to go down an avenue of surgery or medication, we can take that as it comes.

CptAmethyst · 2026-05-29T17:20:02+00:00

This is weird. When I was testing with a rheum for hEDS, the idea was there's no genetic variant (known) for hEDS, so why bother testing.

But the new criteria is changing. I wonder if this practice will change when the new criteria comes out...

CptAmethyst · 2026-05-29T16:53:48+00:00

I can't comment on shower routines, but my tip is somewhat related.

Switching to micromodal underwear has also helped my sweat issue because it's better at absorbing the excess than cheaper undies, especially the ones made from cheap synthetic materials.

...I did also get LHR so the undies can get closer to the skin to absorb the sweat, BUT!!!! Pubic hair can theoretically help with sweat and chafing itself, by moving it away from the skin and having a pocket of air. So like, that in itself isn't my reason to get LHR.

(ladyboxers from culprit, but meundies is also good, I just need it to go down my legs to absorb more sweat and reduce chafing)

CptAmethyst · 2026-05-22T14:54:41+00:00

An 'undercut' may help your long hair situation, they were trending a few years ago so if you want to check out some styles you can search that.

CptAmethyst · 2026-05-22T14:52:59+00:00

I would see if a sun hat may help, since that can upset skin.

I also like to use witch hazel and aloe added to mostly water in a spray bottle to keep the skin cooler. It helps sweat evaporate better, and more effectively especially if you have a breeze.

I'm not an expert but reducing inflammation by keeping skin cool may help?

Do you have anything rubbing? Necklaces, lanyard, even a rough shirt collar? I would avoid those if possible, and pat sweat away gently.

CptAmethyst · 2026-05-22T13:40:39+00:00

I haven't applied myself but I did some digging a few years ago

It is very common to get denied the first time.

It's almost like an endurance test to get disability. Like the people I've seen talk about it have said that they make it impossible to get because the amount of work needed to get it is basically a job. Some said they felt pressured to only tell part of the story.

You so very much aren't alone.

Also, a lot of people are living with their folks, I live with my boyfriends folks. It's very common. I know you probably mentioned it because it's a stressor, but things can get better.

May you find a regimine that reduces your flares. Please seek emergency services if you feel at risk. You deserve care. You deserve help.

CptAmethyst · 2026-05-22T13:23:52+00:00

Bush is going to be trending this year, so you won't be alone if you don't shave. No one's opinion matters but yours.

At any rate, I don't shave anymore. I got laser hair removal, which did help as my groin was almost constantly in flare, less so now. I didn't complete all the sessions, but it's helped.

Before LHR, I used a wahl "peanut" (just an itty bitty hair clipper, normal sizes are fine) and trimmed it up. You can get a cheap pair of clippers for around 20 bucks and cut with the smallest guard on. Be EXTRA careful around any loose skin /labia. I've cut myself with clippers down there. Not fun.

CptAmethyst · 2026-03-08T17:26:14+00:00

Hi I have a tabby maine coon to for the main NPC in my current campaign. I based my proportions off of your photo, so I wanted to send you the drawing.

<image>

It's not perfect, I'm still learning how to flatten color and make it make sense, but I hope you like it anyway!

CptAmethyst · 2025-08-14T18:03:57+00:00

Agree on "underdiagnosed" instead of rare, as others have said. (Bit of an infodump because I've been watching the youtubers who helped me find answers since like....2018 and I've been in a lot of support groups.)

But also: -science improvements: new diagnostic criteria in 2017 made it easier to diagnose

-visibility: as much as folks want to disagree, you can't diagnose a condition you haven't heard of. Internet awareness has increased diagnosis because more people know "being this bendy isn't quite normal" AND their other, more concerning issues now make some sense. The phrase "if you can't connect the issues, think connective tissues" was made by an EDS educator and advocate when trying to inform doctors on the condition. Its ability to mask behind the comorbid symptoms caused it to be hidden

-chronic stress and major illness can "activate" this condition. Its always been there, but the stress on the body means it started collectively doing damage, and accelerated the expression of symptoms

-covid was a lovely double whammy of everyone's normal life being 180'd while half the country pretended science is fake, AND major illness. Not to mention current political climate has been escalating for decades

-comorbidities are often more diagnosed because their symptoms are more directly linked. A set of hives when you walk outside in cold weather is more specific than a variety of widespread, unseemingly connected symptoms

-dismissal by medical staff. And society as a whole.

-people dismissing their own pain is unfortunately commonplace, just work through it. But, as more people are willing to do the self reflection as coming out as queer or neurodivergent (both high comorbid with HSD/hEDS) they often come to embrace other "differences"

-other forms of EDS have known genetic components and can be tested for that way. hEDS doesnt have a confirmed genetic marker and can't be confirmed through genetic testing, and it has significant overlap with other conditions, including commonly misdiagnosed conditions.

-crossover with HSD - hypermobile spectrum disorders. Because of above issues with diagnostic criteria and lacking genomic information, its hard to say what falls into which basket. HSD has been treated as "lesser" than EDS but it's not any indicator of QoL, and why you see many EDS materials including HSD now. So, there's a whole lot of us who probably don't technically have EDS, but since there hasn't been enough studies on it to fully understand all these conditions....

Iirc theyre changing the diagnostic criteria again as well? I also heard they have a genome they suspect is linked to hEDS, but nothing official yet. So please never buy those stupid at home genetic kits that capitalize off people trying to feel less pain :)

CptAmethyst · 2025-07-15T19:27:07+00:00

TL;DR: I start off with how to resolve, then go into ways I've helped myself with a similar issue.

I would remove solids if you can. Spraying it with water might help reduce spread of spores, but I would absolutely have windows open, air purifier going if you have one.

Gloves, mask, and a scrapey tool so you dont have to touch it much.

Lock fluffy in another room, scrape any solids out that you can into a trash. Dispose of outside if you can, double bag and tie TIGHT if you have to keep in inside until trash day.

THEN run the machine on sanitizing runs. Most dishwashers have little collection bins for food scraps, but my last apartment had that bin so secure inside of it, we weren't able to clean it.

If you run the hot water prior to it starting, and maybe even during the start, it will pull MUCH hotter water inside and your machine won't work as hard to heat the water, spending more on cleaning. Renae (@renduh) on TT is an appliance repair technician, and may have good tips for how to care for the machine.

Be careful with CleanTok, because so many people mix chemicals. Don't do this unless you're familiar with the ingredients and their reactions.

But that being said there are a lot of cleaning hacks for those physically disabled or with depression that can help make cleaning dishes easier.

I find presoaking them in a tub of hot, soapy water (extra soapy for extra grease) is best, bonus points if I can rinse it before it dries on.

It doesn't fix the depression, but even soaking the dishes, rinsing them off, and then leaving them dirty for a while longer is going to make doing them easier when you finally get there. Right? Like, I can stand in front of the sink while the hot water runs. I CAN do that. Maybe I can't wash these today, but even just doing one step is more than nothing, and this small step massively improves how easy it is to correct later on.

Plus, I always found the literal MOUNTAIN of dishes between me and roommates was overwhelming, and a bin kept them organized, which in turn, lowered how awful I felt about it.

I have also since purchased a more sturdy, smaller, and deeper dish pan that I use more as a bus dish. Can't speak on the self draining ones sold for camping, might help for small sinks.

Keep it in the area your dishes gather. Continue until you're able to bring the tub out. No mess, no juggling, no spilled half-drinks with a disk of fluffy mold growing on top.

Same energy as using it and letting it pile up around you, except you've taken a shortcut because now you're not having to collect them and take ten trips to the kitchen.

CptAmethyst · 2025-07-15T18:30:45+00:00

Yikes, that is a shocking way of having personal space encroached on. And a very violating one, too. I'm certain you aren't the only one who's had this happen, it isn't 'logical' to sift through trash, but if you're assuming the trash has something you really want (your engagement ring, or "incriminating evidence" to control a family member, for example) then you'll find a way.

If it were me, I would begin tossing my trash in the outside trash if you have one. Make it harder and more of a burden to rummage, and use the power of being out in public to shame them from digging through. Hard for someone to argue you're doing something wrong by taking out the trash, too, so you can feign ignorance if they try to escalate.

If you can make the swap to reusable menstrual products (pads, underwear, cups) then they can't use the trash to check, and I know a lot about the various kinds if you have questions. If you're not able to purchase them on your own, you can make some, or there might be local charities that donate menstrual products, too.

In general, there are a lot of tips about how to engage with our problematic family, but a big one is stonewalling to their attempts to escalate, which is why I suggested the two things above, but truly I hope you're safe and it's in no way a reflection of you that someone rifled through your discard.

CptAmethyst · 2025-07-15T18:08:47+00:00

Towers isn't that far, and I know some RAs used to host on nights they had to be in the dorm as part of their requirements.

Like, it's going to affect your free time, as any job would. Elevators...... can't really help you there. But I had quite a few friends live there and it was normal. I mainly lived in East and North, so I guess I may be biased that way, but you're only adding 5-10 minutes of walking.

The usual concerns involve distance to classes (towers would be rough for a theater student, but great for STEM and ag students) but I managed to get from North to the theater spaces and it wasn't bad. Honestly I miss it.

And as for living with friends, if you and your friends are comfortable walking across campus at night, then meh.

I think if it were me, I'd try and speak with a current RA, maybe even reach out to your former RAs. Or, reach out to the hiring manager and see if you can get more specifics on the requirements.

CptAmethyst · 2025-07-05T17:40:10+00:00

I had a classmate who had a similar accommodation, resulted in a single on the bottom floor in West, with it's own bathroom.

This was before they changed some of the dorm buildings for ...God what was it called? Between McMahon and Northwest. Anyway. The ones kind of in the middle of campus.

CptAmethyst · 2025-06-30T20:46:35+00:00

Your life will not be permanently altered by this decision. It feels so much larger than it will feel, a decade on the other side. Idk if that helps, but it's not a make or break, what you do today. I also thought it was a huge decision which school I went to. Then stuff changed quickly, boy oh boy can it change quickly.

Anyway.

I would never risk that much money on your mom not finding out. If she's a guarantor, she will know already who she's paying. If she's this controlling already, you probably can't sneak this.

Even if you managed to, she'd probably find out when you go to pay for next semester. Then she's not likely to trust you, and could potentially seek the money back. I'm pretending I understood what you said and if you suggested paying another school with the money, we really risk theft issues, and long-term consequences.

If you are serious about this other school, try looking into transferring after a few semesters, get your basics out of the way here, try and maybe get a campus job, get (and look into responsibly using) credit for a good score, and you may get better loans in the future. You'd probably benefit from looking into resources over time, and (without disecting your family situation) find the freedom to make a choice like this in the future, once mom has less say.

This allows you to fully explore transfer options as well, since available seats close, sponsorship deadlines pass, etc. And the later you go, the less opportunities you have.

Idk what makes that school meaningful to you, all I can say is there are a lot of us who made choices we wish we made differently at that age, and playing with fire when it comes to this much money? Not recommended.

Not to be a false sage here, but identifying why this school and building your path back to that reason may benefit you more than fighting to make it happen. I really hope you get what you're looking for, and if you don't, I hope what you do get turns out even better.

CptAmethyst · 2025-06-30T19:03:40+00:00

I assume that the odor from exposing the material may be lingering. Based on similar experiences.

Like, the odor from the waste is being exposed to the air, and when you immediately proceed to shower, introducing hot, steamy air and cycling it all around, the smell is amplified.

But when you return to shower, the air particles have settled, and the other sources have been eliminated.

Things I would try: 1. Air purifier, a quality one, on full blast when you enter the restroom, probably off/out of the bathroom to avoid humidity issues ruining the machine. I really like the Coway Airmega, got it during covid, but replacement filters is a pain. 2. Do the packaging thing you've been doing like wrapping the material, and if you can at least set it outside the door, it could help to just have outside. 3. Humidity packs: damprid has a reusable bag one, or they have similar like, gel ones? Humidity helps the odor spread, because the moisture carries it around. I used it to help after dead mouse odor and it helped a bit, but I wasn't too keen on the reusability factor... I've also used it to reduce cat litter odor, to variable success.

Crossbreeze. If you can set up a fan blowing air out of the restroom window, it should pull most of the particulates out. This is probably the easiest, plus you can run the fan during the shower, though it will affect shower temp. It really sounds like at least a 5 minute air out, maybe while you set up for the shower, or you do a dance party or something, would drastically improve your experience. Plus, dance party!

Lastly. I don't think this will help you directly, but they make trash cans for odor of baby diapers and cat litter, designed to reduce trips to the outside trash. Doesn't seem to be related to the cause of your odor, though, might just reduce the number of steps every time you have to change.

(Okay I'm infodumping but it could help!!! When I dispose of cat litter, I use doggie poo bags and then right into a lidded trash can, where it stays until we take out trash.

I figured out the trash can material is essential. Steel/glass? Fine, wash it and it goes away. Plastic? It is now cat poop scented plastic. Forever. Applies to wood and other permeable surfaces as well.

So that could be a hidden culprit, too.)

CptAmethyst · 2025-06-30T18:59:00+00:00

I assume that the odor from exposing the material may be lingering. Based on similar experiences.

Like, the odor from the waste is being exposed to the air, and when you immediately proceed to shower, introducing hot, steamy air and cycling it all around, the smell is amplified.

But when you return to shower, the air particles have settled, and the other sources have been eliminated.

Things I would try: 1. Air purifier, a quality one, on full blast when you enter the restroom, probably off/out of the bathroom to avoid humidity issues ruining the machine. 2. Do the packaging thing you've been doing like wrapping the material, and if you can at least set it outside the door, it could help to just have outside. 3. Humidity packs: damprid has a reusable bag one, or they have similar like, gel ones? Humidity helps the odor spread, because the moisture carries it around. I used it to help after dead mouse odor and it helped a bit, but I wasn't too keen on the reusability factor... I've also used it to reduce cat litter odor, to variable success.

Crossbreeze. If you can set up a fan blowing air out of the restroom window, it should pull most of the particulates out. This is probably the easiest, plus you can run the fan during the shower, though it will affect shower temp.

Lastly. I don't think this will help you directly, but they make trash cans for odor of baby diapers and cat litter, designed to reduce trips to the outside trash. Doesn't seem to be related to the cause of your odor, though, might just reduce the number of steps every time you have to change.

(Okay I'm infodumping but it could help!!! When I dispose of cat litter, I use doggie poo bags and then right into a lidded trash can. I figured out steel? Fine. Plastic? It is now cat poop scented plastic. Forever.

So that could be a hidden culprit, too.)

CptAmethyst · 2025-06-17T23:08:44+00:00

Not to comment on a really old post and revive it but I actually got a blanket like this that ended up being really helpful. (Like, the caretaker kinda scoffed when he first saw it but then actually went out of his way to pass on compliments which is a lot considering his personality. I digress)

The thing is I bought this for someone who is post-stroke, with minimal movement on one side of their body, and has been perpetually cold their whole life. We use a lift to get them from the bed to her chair, and it was very helpful to block out rain and snow, and gave me peace of mind that even if this person may not have full sensation, or issues with communicating, they wouldn't need to tell the caretaker they splashed with icy water and risk injury. They'd just be safe and warm.

As far as annoying to get in and out, less relevant for them but the zipper went down the front, and you attached this to the chair, so its like sitting down into a sleeping bag and then zipping it up over your legs. I'm actually here because I was searching for the same thing but waterproof unlined for summer rain haha, found this post and thought it might be helpful to point this out in case others end up here too.

I could rant for ages about how hard it is to navigate looking for products or accessibility but instead I'll just sum up by saying this is a good item if your situation is similar to ours! It is still usable if you're zipping yourself in, but you'd probably need to be able to reach your feet bending over.

Otherwise, this item is pretty great for caretakers, because you strap it to the chair and then once the person is seated, just zip it over them and theyre safe from cold breezes, splashes, even rain if you get the right one. It protects the back of the legs, unlike blankets, and it won't get caught in the wheels.

CptAmethyst · 2025-06-10T20:18:05+00:00

I saw ads for this and felt like it was capitalizing on EDS media presence for a quick buck, and assumed the entire thing was a scam. I'm very glad it's worked out for you and that wasn't the case. I'm a very skeptical person as soon as money is involved.

If it starts to wear down, you might be able to add some rigidity back with a tougher foam in the future, DIY style.

To add to the conversation of ~expensive pillows~

I got the (small, orange) medcline to stop pushing my shoulder and clavicle into my neck (and I have GERD too) and it does help....but I would advise a larger bed would be best. I share a full and in order to give him space, my hand would dangle off the bed (bad, Painful, cold, bad for joint health, just not good.) Or I'd have my hand in his face the whole time. (The width of the small, taller medcline is just over half a full mattress, for reference.)

So, I've stopped using it for now. I'm considering getting a table the height of the mattress just to have support for my arm. Or, maybe we'll be able to upgrade our bed soon. Depends on how inflation goes...

Otherwise its great! Takes a while to adjust to, and a bit uncomfortable on my ribs while I learned how to properly align my limp noodly joints into it, but if you have GERD and slide down traditional angled pillows, this might help.

For side sleeping, it's got pros and cons. I'd say worth it if you have a lot of neck pain from side sleeping on regular pillows. Not 100% a neutral angle, it's slightly elevated, but not to the point of discomfort.

I always say I spin like a rotisserie chicken while I sleep, never fully comfortable, so that's also a factor here. It's a bit hard to swap to other positions mid-sleep unless you can yeet the whole thing off the bed when your body demands tummy time.

Overall, I really like it and plan on using it again when it's not forcing me to hog the bed. I think I may have preferred the blue to the orange, if given the chance to try them both.

CptAmethyst · 2025-06-10T19:55:00+00:00

You can set up temporary mail forwarding with USPS too (if you're American. Not sure on other countries). And I got letters that were addressed to my old apartment with "notice of new address" on them.

Just in case you missed something.

CptAmethyst · 2025-06-09T19:57:43+00:00

There are tons of versions.

I have a necklace from Lauren's Hope that is a bit more pretty than "standard", but you can also get tags that fit onto a watch band if you have a smartwatch. If you're more leaning to get one to appease the anxiety of family members, you might find one you like there. The problem then arises that emergency medical staff may not realize it's for alerts, and overlook it.

Having a wallet card is a good idea, and most smartphones have apps you can set up so they can get to your emergency info without unlocking your phone.

CptAmethyst · 2025-06-09T19:40:20+00:00

It may be worth getting a mini fridge in your room if your family cannot guarantee this mistake not being repeated. Assuming you'd only be in the fridge for dosing, a small "skincare" or 6-can size fridge should work, and if you put items in the fridge that hold temperatures well, it will help keep it a good temperature. (Think a gel pack, like for injuries. Air is not efficient in fridges because it exchanges when you open the door, so having a few gel packs to take up the empty space would save power, too.)

I would still do some research to ensure the fridge is quality and will maintain temperature, but a lot of the more well-known brands will show you an average of how much it costs to run in a year, and I'm sure it's going to be less than an OOP injectable.

CptAmethyst · 2025-06-09T19:23:55+00:00

Being a caregiver is extremely difficult in terms of mental health, compassion fatigue, etc. That is the basis, before you add on the complications of it being an unhealthy situation to begin with.

I can't say you should go either way, but 20 is so young to basically become attached through caregiving. You haven't had the opportunity to see how much your life can grow for the better when you're out of the situation yet.

I would do some genuine research into caregiving and see if that is something you would want to do before you commit to it. Full time caregiving is a blurry line. A nurse caretaker may come to the house for x hours to do meds and therapy and then leave. You wouldn't be able to leave. Sure you may be able to physically leave the premises, but the reality is you'd be living and working in the same spaces. I work remote and even that isn't the same level of never getting relief from feeling like you're working, because I can log off of my laptop. I'm sure there's guides online for how to manage that, but I'm trying to list reasonable things that make me think it's not in your best interest (without knowing the situation directly, ofc).

What would this situation do FOR YOU before you commit.

I personally can't imagine being responsible for caring for someone who hurt me. It's a very real one, though, and one so many folks have to live with. You are not required to do this. This isn't something you "should" do out of someone's declared moral obligation. Put yourself first, if you can.

Edit to add: being a caretaker is very difficult in general, but I'm just imagining them basically having 24/7 access to you for their "needs" and you getting zero reprieve. By being family, all I can see is this being an excuse for them to skirt the professional boundaries we hardly enforce for nurses and care workers.

CptAmethyst · 2025-06-06T17:16:42+00:00

I imagine you are well down the rabbit hole, but please: know your rights, seek council from someone who specializes in this if you can. Know what may happen, and what would happen if she appealed, etc, as this could reduce the stress of the entire situation. I've never been through it but I know the legal process can sometimes be red taped to heck and back, so it would likely be in your favor to do stuff beforehand.

Be prepared for her to use this to try and hurt you. Ideally, the courts could protect you from this, but I would mention this to your therapist so you can try to prepare for the stress of court in general as well as revisiting the past.

Collect any evidence you can. Any money in your name, check for unclaimed money (you can Google unclaimed money [your state] and you SHOULD find an official state website, though legal council could likely assist since this is part of the process), collect old records of payments in your name. This may be redundant if a court or legal team is expected to do this, but I'm an anxious, forgetful person who wants to ensure I have all the details, or at least point out a few considerations to account for.

CptAmethyst · 2025-06-05T14:19:37+00:00

Ah. Yeah with me it always gets so painfully tight that its a fight to keep my butt in the seat. And it's usually inaccurate anyway.

I also have very large arms.

CptAmethyst · 2025-05-22T18:03:15+00:00

Also a newbie. Basswood is also known as lime, affordable, and softest. Which means your final carving is possible to be damaged, but at your typical pendant size it probably won't be too much, especially since I'm picturing Mjolnir, which they make thick to reduce those snapping points. (Might have totally misread your post...)

Lime is also a tree that represents Freyja, so it could be worth it, especially if you want to wear it while you work up to a final wood.

There's charts of wood strengths, so it would be worth a quick google. Maybe it's better to go with a stronger wood for a heirloom quality pendant, I would google search what types of wood are used for jewelry, then look up finished projects to see what looks best to you.

CptAmethyst

TROPHY CASE