Hi Cdn Grl,
Welcome to the site. I also have Lupus and have had it for most of my life. I hear where you are comming from, because this is a hard illness to deal with big time. Often times we don't look ill, but indeed we are. I think the hardest thing for me was having to give up going to the beach when my children were young. I could not in any ways tolerate the sun. I still can't and I had to come to the realization that there are a lot of things that I had to give up reluctantly, but it is just the way that it is. Please keep coming in and posting we all care very much for you and about you.
Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.
Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.