Welcome to our family. Lupus effects all of us in different ways; which makes this disease and it's cure a mystery. Everyone on this forum is supportive and informative. In Lupus, our good cells start attacking our good cells.
So . . . Do you have SLE or DLE or both? DLE means you have a rash usually on face and/or arms/shoulders of body. Have you seen a rhumatologist? Did they put you on any meds? If so, what? Plaquenil is very good to start out with, though you will need a baseline eye exam prior to beginning the medication. Check-up exams are suggested every 6 months to 1 year. Kenalog shots are great for relieving pain in the muscles and joints. I think of it as the "miracle shot." lol.
I would suggest Dr. Daniel Wallace's book "Lupus" and "Lupus for patients and families." You can find his book on amazon very reasonably or on ebay. It is very informative and helps in understanding this disease. I still reference back to it when new symptoms occur.
I am sorry to hear you have had such a rough time. We are here to listen and comfort. If we haven't had the symptoms, we will possibly have them at some point. Please share your experiences.