• 10 months ago


    My mother had lupus and so did I. It did end my working life early because it forced me out on permanent disability, gave me a hard time for 10 years or so; then went into remission. However, along the way, I also picked up epilepsy and 2 diseases: Sjogrens and Raynauds. For the rest of my life I will be on seizure meds. Within the last year, S & R (I call them my evil twins) have come back and likely will haunt me for the rest of my life. Sjogrens makes every orifice dry, as in dry mouth, dry eye, very dry skin etc. I drink a LOT of water every day to help offset it. Raynaud's makes me quite sensitive to cold - even in the middle of summer, going by the freezer section in the grocery store is uncomfortable. In the winter, I am known for and teased about how many layers I wear.

    Just recently, my internist found a spot on one lung. Had all kinds of tests and finally got referred to a pulmonologist. He zeroed in on S & R, telling me either one very possibly could have caused the spot.

    Life wasn't too bad when my lupus was active, but I sure DON'T LIKE the side effects it left me with. Overall, I try to avoid taking any long-term meds. IMO, taking meds for the long-term messes with Mother Nature. Obviously, there are times when something in your body goes wonky and you need to take a med for a while. For me, epilepsy has been an exception. I have tried not taking seizure meds and been convinced that I need them.

    I'd love to hear from others who have lived with S & R for a long time and felt the evil effect.