Ask Lemmy
A Fediverse community for open-ended, thought provoking questions
Rules: (interactive)
1) Be nice and; have fun
Doxxing, trolling, sealioning, racism, and toxicity are not welcomed in AskLemmy. Remember what your mother said: if you can't say something nice, don't say anything at all. In addition, the site-wide Lemmy.world terms of service also apply here. Please familiarize yourself with them
2) All posts must end with a '?'
This is sort of like Jeopardy. Please phrase all post titles in the form of a proper question ending with ?
3) No spam
Please do not flood the community with nonsense. Actual suspected spammers will be banned on site. No astroturfing.
4) NSFW is okay, within reason
Just remember to tag posts with either a content warning or a [NSFW] tag. Overtly sexual posts are not allowed, please direct them to either [email protected] or [email protected].
NSFW comments should be restricted to posts tagged [NSFW].
5) This is not a support community.
It is not a place for 'how do I?', type questions.
If you have any questions regarding the site itself or would like to report a community, please direct them to Lemmy.world Support or email [email protected]. For other questions check our partnered communities list, or use the search function.
Reminder: The terms of service apply here too.
Partnered Communities:
Logo design credit goes to: tubbadu
view the rest of the comments
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.
You're a good 'un. Think we'll keep you around. ๐