Hey, Lisa, I'm glad you had a good day today!
Regarding exercise, I'll be honest-- I struggle with it. The more I use my legs, the more they hurt, and that makes me hesitant to really get moving like I used to-- running, all day hikes, long bike rides etc. So, I walk. Every day. For at least three miles. That's my baseline. If I'm feeling good, I may go hike some hills. I used to do a lot of yoga, but I've lost some strength in my upper body, which makes yoga harder. After talking with my (super-awesome) primary care doctor, I've decided my goal for the summer is to (a) get back into a gentler form of yoga and (b) to start swimming for exercise. My doctor thinks swimming might cause me less leg pain.
Regarding Plaquenil (generic name hydroxychloroquine), it's a funny drug. It was developed as a treatment for malaria, and at some point, someone noticed that when people with lupus took it, sometimes their symptoms would get somewhat better. Though no one knows exactly how Plaquenil works, I think the favored theory is that it modulates or interferes with how our immune system cells communicate, and somehow, this controls autoimmune diseases. From my research, Plaquenil is one of the most gentle of the disease-modifying drugs, so it's less likely to leave you at risk of infection. One known serious side-effect that happens to something like 1 in 5,000 people after many years of use is that it can cause retinal deposits, which can affect vision. So, when you're on Plaquenil, you have to get regular eye exams. It can also commonly cause stomach upset when you first start taking it, but for me, that went away after four days.
I've only been on Plaquenil for less than a month right now, and it can take three or four months before you can tell if it's having an effect. From what my rheumatologist told me, if it works, I'll likely realize in a few months, "Hey, I haven't had a rash in a long time, and my muscles are feeling a little better!" Right now, I don't feel much different than I usually do, but because I am experiencing zero side effects from Plaquenil currently, I'm happy to stay on it for a bit to see if it works for me. Many people I've talked to, especially folks with lupus, consider Plaquenil their "miracle" drug because it can keep a disease under control with fewer side-effects than some of the stronger disease-modifying drugs. That's why rheumatologists often like to start with Plaquenil before they try stronger drugs that might be more expensive and have higher risks of side-effects.
Trust me, I know how intense all this is to deal with. There are lots of folks here with a wide range of experience -- like Bill, who is a wealth of information on MCTD and polymyositis -- so keep asking questions if you have them, and we'll do our best to help. Oh, and venting is encouraged, too, if you need it.