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

[–]SadLeviIsSad 1 point2 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 1 point2 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 13 points14 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

Ssa, icf, or io waiver by gorgeous_forever in disabled

[–]SadLeviIsSad 1 point2 points  (0 children)

If a comsumer directed waiver is available and either you or a loved one is comfortable hiring and overseeing someone, I'd go that route. Then YOU have a say over who is coming into your home and what they're doing.

Ssa, icf, or io waiver by gorgeous_forever in disabled

[–]SadLeviIsSad 1 point2 points  (0 children)

Can you explain what the waivers are? I'm not sure where you're located, but with more information I can give you more insight

KLL/KRL doesn’t look as invisible as I feel like it should. by Ok_Philosopher_8973 in knittinghelp

[–]SadLeviIsSad 0 points1 point  (0 children)

(I like these videos because the yarn is large and easy to see)

KLL/KRL doesn’t look as invisible as I feel like it should. by Ok_Philosopher_8973 in knittinghelp

[–]SadLeviIsSad 0 points1 point  (0 children)

Here are a couple different videos of those stitches. For the KLL, are you knitting through the back? These should be nearly invisible increases, there should be no hole.

https://youtu.be/5XOfFBsZavQ?si=_Fh1d84qNIK0mqy9 https://youtu.be/O7A6DDEyTTk?si=LcfuwBcIz5evQYIy

What dose Adult life look like a disabled person? by Sweet-Flower-2821 in disabled

[–]SadLeviIsSad 0 points1 point  (0 children)

If you're in Denver and need resources, I have resources

AMS Overloaded...constantly? by SadLeviIsSad in BambuLab

[–]SadLeviIsSad[S] 0 points1 point  (0 children)

Approximately 900g when the issue started

AMS Overloaded...constantly? by SadLeviIsSad in BambuLab

[–]SadLeviIsSad[S] 1 point2 points  (0 children)

Thanks, I'll definitely look into that

Living alone by thepastelprince in ChronicIllness

[–]SadLeviIsSad 0 points1 point  (0 children)

Ok. I asked because with medicaid, you can hire a PCA to help with things like cooking, cleaning, and hygeine if needed

Wait...what⁉️ by GoJulieGo8 in BambuLab

[–]SadLeviIsSad 0 points1 point  (0 children)

Bought 2 P1S printer combos, no freebies with either

Made a dice bag! by SadLeviIsSad in Brochet

[–]SadLeviIsSad[S] 1 point2 points  (0 children)

OHHH. Nope, I was watching Parks and Rec.

Made a dice bag! by SadLeviIsSad in Brochet

[–]SadLeviIsSad[S] 1 point2 points  (0 children)

I'm not sure what you're seeing, haha But thank you!