Living with Chronic Illness: Seeking Advice

I was originally diagnosed with Lupus back in 2009, but last year my rheumatologist updated my medical record to include MCTD. The hardest thing I've dealt with over the years is the wide array of symptoms. Some years were better than others. It's difficult to say how each patient will progress. I haven't found a remedy for the swollen hands and fingers, but I know the heat makes mine much worse, yet the cold aggravates my Raynauds. I have not met anyone else diagnosed with MCTD, but from online boards I've seen those with very mild disease activity to severe complications- though not many. Bloodwork and frequent doctor visits seem to be the only defense we have in monitoring our disease activity. It helps to keep a journal of symptoms and pictures of any swelling/rashes, because its overwhelming to remember everything at visits.