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Joined 11 months ago
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Cake day: November 3rd, 2023

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  • 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.