New to this. Talk to others like me

Hey, I'm Jeanine, 20 y/o and I was diagnosed my senior year in high school when I was 18. I lost a good amount of hair when my doctor finally started paying attention. He did the panel and it was lupus.They said it was CLE but the rude doctor said it was a matter of when not if that I would progress to SLE and he put me on plaquinil. He promptly then left lol. I waited for about a year to see another doctor because no insurance company would accept me. I had to get on the SHIP which is awesome. I get tired very easily, and sometimes a bit depressed (but that may be due to my age and stress levels in college), and I know when I'm stressed because I get these terrible back pains on the muscles closest to the spine. I don't think anyone takes me seriously as a patient. I can sleep a lot (if you let me, I could sleep for upwards of 20hrs) but still wake up like I got a 20min nap and be exhausted 3-4hrs later. I am getting to the point where I don't know what to do. My mom tries to be supportive but then wants to take me on vacation to some of the sunniest places. Then gets mad when I don't want to go. I explain it to people but they don't understand. I drink a lot of coffee on a daily basis just to stay conscious. And as if my memory wasn't bad to begin with, it has just become foggier. I am in college, hard-working and dedicated but sometimes I just don't know what to do. If anyone could offer advice or just hear me out. I feel like I'm going crazy with this and it's driving me, not me driving it.

Yeah I just went and bought some clothes that are spf 30+ for the summer. I'm just wondering what everyone does to cope with the amount of sleep they get. Doesn't 10+ hrs disrupt work or school? And I know this is wired but I get hives on the underneath sod my forearms during emotional stress. I have a rhumie who doesn't really think my stuff is serious either is a big problem too. I just wanted to dip my foot in the water and talk to other lupus people 😁

yeah I was on plaquinil till last thanksgiving, I'm still on a ton of vitamins. I think I was a light sleeper to begin with but now it's not good sleep at all.

My future daughter-in-law has Lupus, and Diabetes, plus her stomach is swollen. She has been in the hospital 4 out of the last 6 weeks. My son is discouraged but is staying by her side. It seems she has mood swings and he's not sure how to handle her because he doesn't want her to get stressed out. They are living together. Any suggestions for him? Thank you.