My name is Kathy. I have SLE Lupus and have had it for years. It is a hard illness to deal with at times. I hear where you are coming from about others not helping out a lot. I think a lot of times they just don't understand how bad we feel as they do not have this illness. This is a really hard illness to deal with. I understand about what it is like to be outgoing and energetic and then all of a sudden that is gone. It is upsetting big time. As time goes on you will figure out what you can and can not do. As far as the housework and grocery shopping, I finally had to tell my husband and kids that either they could help out or it would not get done. They got the message quickly and they all started helping out more. Sometimes you have to speak right up and be rude about it to get the message across. There are a lot of good folks that comes in here and they may have some better information that can help you out. I hope that you keep posting as we all care and we do definitely understand how you feel big time.
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.