• 1 Post
  • 164 Comments
Joined 11 months ago
cake
Cake day: November 3rd, 2023

help-circle









  • If they are actually exploiting people… I know this sounds like exploitation but this issue is pretty complex and there may actually be no “jobs” for a lot of differently abled people if there isn’t a carve out for certain scenarios. I say jobs in quotes because there are some places that are more or less daycares where adults of certain ability levels can go to work and do end up making less than minimum wage. But they are doing so because they are receiving a level of care and supervision at the same time. These are people who you could not just teach a job and leave to their own devices for any amount of time without endangering them. But they are capable enough to complete certain tasks. I have known adult aged people who’s elderly parents would not know what to do if they had to care for them every day all day.

    That said, why in our society are some people put in this situation where the only thing they can do with their adult child is send them off to a menial job for daycare? It’s great that some people get the option to work, but they should also be able to receive care and not have to work menial jobs for sub minimum wages.

    Like I said, the whole thing is way more complex than the no nonsense sound bite. If she were to just waive a regulatory hand and eliminate this exemption, without making more comprehensive changes, it might put some families in a very tough position. Having to suddenly pay for daycare for adults who previously were earning some amount of money.

    But the places I’m talking about are usually non-profits employing these people to do work for other for profit businesses. It’s not the person at your local movie theater or grocery store working mostly independently and getting paid less than everyone else.


  • The only side I’m going to come down on is that a lot of the home assistant maintainer community have a serious attitude problem.

    They want to outwardly act as if they want to build a user friendly home automation system for all. But there’s a lot of self important snark in the forums when devs cause problems and users complain. They still act as if they are building this software for free and if anyone doesn’t like how they are doing things they can sod off. But now they have a decent sized paid staff and a mission statement to make the software for every day users.

    Their documentation also leaves a lot to be desired and they don’t seem to have any procedures in place for getting it updated before breaking changes.










  • First things first, treatment is way way better than when your grandmother was diagnosed. We have lots of off label meds and even now have an on label lupus medication. I was diagnosed at just before my 22nd birthday, I’m 38 now and I’m doing great. You can get through this. It gets better.

    One thing you are going to have to learn is your new limits. Chances are you’ve already experienced what it’s like to exceed them, but now you know why. Stay out of the sun, take vitamin D, when your body demands rest, listen. Get a consistent sleep schedule and stick to it. If you are not already off alcohol it’s worth considering but not necessary (depending on your meds.) Cannabis is also worth considering, but again between you and your doctor(s).

    Listen to your doctor(s). Make sure you keep up with your Rheumatologist and your GP. You may have to add in an opthalmologist depending on your meds as well (don’t worry about that, eye complications are rare). It may take time to find the medications that work for you, be patient. It’s probably not going to be just one medication, most people do best on combinations. Be sure to get off Prednisone as soon as you can tolerate, it’s only meant to be temporary and it can have long lasting effects. Find a local support group, the lupus society has them all over. https://www.lupus.org/

    Feel free to DM me or add me as a friend. This isn’t the end of your life, but it is the start of a big change.

    This is all less medical advice than it is lessons I learned the hard way.