Original
Learn about your condition, and know your limits.
Don't let this horrible disease take over your life, find ways of working around your SS and learn how to adapt some things (like work/medication etc).
Be open and honest, know enough that you can teach others...
Don't get tied up with keeping track of dates etc for your doctor... keep photos on your smart phone and keep track of elevated temps... look for trends in your health and see if you can figure out if any, what your triggers are.