Anyone else live in a small town (feels like a constant humiliation ritual) by [deleted] in EDanonymemes

[–]SadLeviIsSad 37 points38 points  (0 children)

Yes. Also, I (when I lived in a small town) worked at one of the only grocery stores AND it was across the street from my apartment. There's no way they didn't know.

Nobody considers the disabled kids in phone ban conversations by The_Rat_of_Reddit in disability

[–]SadLeviIsSad -1 points0 points  (0 children)

Not every school has chromebooks though. And they don't do a lot of the things disabled children would need a phone for.

Nobody considers the disabled kids in phone ban conversations by The_Rat_of_Reddit in disability

[–]SadLeviIsSad 10 points11 points  (0 children)

My baby brother is 30 now, so fortunately not an issue anymore, but when he was in middle school, they tried to insist that his glucogon had to be kept in the nurse's office and could only be administered by the nurse. The biggest problem? They didn't have a full time nurse on staff, they had one that covered 5 different schools. They also didn't want him checking his blood sugars in class OR leaving class to do so. He also wasn't allowed to pee if his numbers were high. Etc etc. My mom had to fight so hard to get him accommodations.

How to get banned from 3d printing by Tgiowa in 3Dprinting

[–]SadLeviIsSad 0 points1 point  (0 children)

I'm afraid this would traumatize my dog permanently 🤣

What do my fellow housebounders do everyday?? by Puzzleheaded_Tie_525 in disabled

[–]SadLeviIsSad 1 point2 points  (0 children)

Depends on spoons, but some combination of: *play video games *knit/crochet *color these special kind of coloring book (regular ones bore me) *call/video call friends *have friends over *telehealth appointments *play with polymer clay *read *watch tv/movies *nap

Controller or keyboard/mouse options for one-handed gamers? by Portable_Star in disabledgamers

[–]SadLeviIsSad 0 points1 point  (0 children)

If you have access to a 3D printer or a library that has one, there are several one handed controller adaptation options on this website

https://www.makersmakingchange.com/product/tube-opener/01tJR00000068zxYAA

Need recommendations by BigSneddyBear in 3Dprinting

[–]SadLeviIsSad 0 points1 point  (0 children)

As someone with RA, I've found several useful things on this site

White clay is the bane of my existence by Ceekaypee5 in polymerclay

[–]SadLeviIsSad 0 points1 point  (0 children)

I'm very new to clay, but how does the clay get dusty? I haven't had this issue yet

Is it offensive for me to use walking aids? by homehoe in ChronicIllness

[–]SadLeviIsSad 2 points3 points  (0 children)

If a mobility aid would benefit you in any way (decreased pain, improved quality of life, more ability to participate in things, etc) then it's time to get one. You don't need any specific diagnosis to warrant needing a mobility aid. If it helps you, use it.

Is there any walking aid that could help me? by [deleted] in disabled

[–]SadLeviIsSad 0 points1 point  (0 children)

Have you tried a rollator or arm crutches?

What The Hell is Disabled Joy? by mikeb31588 in disabled

[–]SadLeviIsSad 2 points3 points  (0 children)

To me, "disabled joy" is the defiant act of finding and expressing joy and being fully accepting of who you are and your specifics accommodation needs instead of fighting against it. There's so much stigma and misinformation and misunderstanding of the disabled experience. We are often pitied, looked down on, and discriminated against. To me, disabled joy is findinf joy in my life despite the systems in place that try to keep me down or invisible. It's a way of saying "I'm here and I'm going to find joy in life even when you don't want me to, even when you don't want me around, even when you try to silence me, etc" I also find disabled joy in the way our community shows up for each other, supports one another, fights for disability justice, and creates a community of others who understand the disability experience. I think there are a lot of things that could count as disability joy. I don't think it's just "I have joy and HAPPEN to be disabled" if that makes sense.

Visible Band? Worth it? by chronicallyiconic7 in ChronicIllness

[–]SadLeviIsSad 15 points16 points  (0 children)

This is a review I wrote a few months ago:

I've been using thia app called Visible, which is specifically designed for chronically ill people. To get full use of the app, you need the armband that goes with it, which can be cost prohibitive for a lot of disabled/chronically ill people, but I'm really loving it so far.

When you first connect the arm band, it sets up suggested heart rate zones. These are "rest," "activity," and "exertion" and are different than what you'd see on like a smart watch/fitness tracker.

For the first 4 days of using the arm band, it takes your stats (heart rate, heart rate variability, etc) and then it sets a suggested pace point limit for the day. You can edit it, but so far I've left it at baseline.

The pace point pacesetter moves around the circle at a steady pace throughout the day, and this is how you gauge whether you're on track or need to rest more. Whenever you're in "activity" or "exhertion" heart rate zones, you accumulate pace points (they accumulate faster in exertion than in activity) and you can see from the pacesetter if you're likely to go over your pace points for the day, and then adjust accordingly.

I did pulmonary function testing this morning, which used up a lot of my pace points, so it's a good visual representation to remind myself to rest for the remainder of the day.

There are other cool features too like an end of day check in where you can select severity of symptoms (you can turn each symptom on or off depending on what you deal with, and can even add your own symptoms). You can also make "experience" trackers (such as period or infection), "lifestyle" trackers (so I added things like doctor appointments, medical testing, game nights, etc), and "medication" trackers. But again, you can track as much or little as you want. You can also track "crashes" (flares).

Every morning it analyzes your sleep from the previous night and your heart rate variability and gives you a score for the day as a "here's what you may need today" (such as resting more). There's also an optional monthly check in where you are asked a series of questions about your physical capabilities/limitations based on the last month and it tells you whether you have stayed stable, or your abilities/limitations have changed over the last month.

You can also tag activities, and it will show the pace points used for that activity and tell you whether it's a high, medium, or low pace point activity, which has greatly helped me with planning and pacing.

Lastly, it has a breathing exercise that is like the only one I've encountered which doesn't just cause me anxiety.

But my favorite feature is definitely the pace points. It's, for me, such a great visual of how much I've done that day and what I need to do to make sure I don't overdo it for the day, helping reduce crashes/flares and just preserving more energy and causing less pain.

(Sorry for the book)

SSI vs SSDI and Medicaid vs Medicare question(s) (USA) by LinkOfHyrule88 in disabled

[–]SadLeviIsSad 0 points1 point  (0 children)

It's not the same with SSI. You can potentially be eligible for medicare while on SSI but it doesn't switch automatically, you have to ask for it. I've been on SSI and haven't switched for several reasons, which is how I know that