First let me say what was echoed in the blog section about what a wonderful brother you are. "why" is a question I no longer allow myself. This disease sucks. Sometimes it is worse than others but it does suck. It sounds like your sister is going through a very severe bout with Lupus since you mentioned CNS involvement (Central Nervous system). Not everyone has seizures and organ damage but when you draw that straw it is an even more difficult disease to handle. The good news is that most of these things can be controlled with meds however it takes awhile to get them sorted out and figure out what works and what doesn't. There is no cure but the meds do work to keep it under control but it takes awhile to get there. The bad news is that sometimes the meds that work stop working and they have to be changed again. It is all just part of the process.
You said something that is often said by younger people and although I understand it completely it still worries me to hear it. "They never give her a break from Lupus". While I understand what you are saying and we have to learn to live as normally as possible within the confines of our disease, we can never forget that we have it and we can never forget that it is our meds that keep us alive in most cases. Too often in the search to be "normal" people look for things that they think will allow them to stop their meds and be young and healthy again. Please, Please remember that it doesn't work that way. We all wish it would but it doesn't. 40 plus years ago almost everyone died from this disease (except for a few lucky ones) but now we understand what meds will help keep our disease under control. Not gone, but under control. Never let these facts escape your head. It is temping but these facts, above all, will keep your sister alive.
Don't think think that what I said above means that we don't get to enjoy the life we have. We do! It is just a "new normal". We have to have things that we enjoy or it isn't worth living. Our dreams may have to have changed but that doesn't mean we can't find new dreams and make them a reality. With the help and support of family like you your sister will be able to get beyond the initial hurdle of getting this under control and she will be able to have a long, prosperous and happy life!
Welcome to our WHL family! It is ALWAYS wonderful to have supportive friends and family join us! Please make yourself at home. Ask questions, tell stories or just do whatever it is that you need/want to do. We are really glad to have you here!!