So, you've just been diagnosed with a chronic disease -

[hedgehog]

My rheumatologist wrote down a web address on the lupus brochure - (he was out of the Sjogren's brochures) and said he's see me in a few months unless I had a flare before then. he suggested I might be going on prednisone. The guy meant well, but he's a specialist. I think he'd be great for stiff joints, but my impression is that for anything else, he drops the ball.

So - I got out every book the library system has on Sjorgen's and found out that yes, fatigue is a major complaint, that my GERD was probably due to Sjorgren's, that my dry cough was likely a symptom ( and that the Singulair I've been taking for years has been shown to be effective!), that the salmon oil and Vitamin E I've been using are recommended, etc. I've made an appointment with my optometrist to be evaluated for dry eyes and to see what he recommends for now. (Having lived with allergies all my life, I'm used to ignoring minor complaints, so I want a professional opinion on this!) I have the special toothpaste sitting up on my sink counter right now, and a glass of water at my desk.

I showed the rheumatologist a problem with my eye, and he indicated he didn't treat eyes. I took it to the dermatologist, who suggested an opthamologist. My optometrist may be able to solve the problem when I see him next week. I'm 99% sure it's some aspect of Sjorgren's.

I'll be seeing my Family Doctor and asking him about planquenil vs. prednisone and how to bring that up with the rheumatologist.

I'm doing all this having raised several kids with autoimmune disorders. I know that generally there is a main symptom and then a cluster of secondary symptoms that may themselves be the more serious problem. I also know that most specialists just don't have the time to do the proper patient counseling on how to live with a chronic illness.

The point is - the best way to take care of a chronic disease is to be your own advocate. Get out there, get educated and be proactive!