My first piece of advice: You need to be a P.I.T.A. By that, I mean you need to be a Polite, Insistent, and Thorough Advocate for your own health. Prior to 1998, I was not a P.I.T.A. And, in my non-M.D. but not so humble opinion, my lupus was dramatically under-treated. 1998 was a complete and total disaster with the sole exception being the birth of my daughter. (Consider, too, that beyond not being much use to my wife through a difficult pregnancy, I was also a significant burden.) From 1999 through the present, I have been treated far more effectively. If I'm scared about something, I let the doctor know. But I use common sense. I won't wake a doctor at 3 a.m. because I ate too much and have indigestion. If it's 14 days past a dose of Cytoxan and I seem to have an infection, I will insist that I be seen by a doctor at my primary care physician's office that day. Bear in mind that in my version of P.I.T.A., the P is for Polite, not Pain. Honey versus Vinegar and all that.

My second piece of advice is that if you don't have a totally traditional insurance plan (who does anymore?) you find a PCP (Primary Care Physician) that is willing to work with out-of-network specialists. Staying in-network could be the difference between life and death. I'm not kidding. Your PCP should have a reasonable understanding of your illness. The extra out-of-pocket expenses for the specialists are worth it. If you're close to a top-notch specialist, great. If not, find a competent specialist within a short drive of where you live or work and then find the BEST specialist within about a 2-3 hour drive. See both of them and don't wait to make the appointments. Top notch doctors often can't see new patients for months. Simply by establishing a chart with these two specialists, your primary care physician will have people he or she can call on when things get complicated. And if things get hairy, you'll have much more immediate access to the specialists than a "new patient." Keep in mind that from patient to patient and over time lupus can vary from mildly annoying to deadly.

Finally, get yourself a (big) 3-ring binder and page protectors. Insist on copies of all lab and diagnostic reports. Keep them in the binder and bring it with you whenever you see a doctor. Don't rely on different doctors to foward your results to each other. You're faster and more reliable and trends are important. By having all your results with you, any doctor you see can look for trends with relative ease. This can also help prevent unnessary duplicate tests.