Hi, I'm Lewy, 28 year old male with relatively active SLE....I've had pretty much all the problems one would expect since I was around 13....rash, nephritis, repetetive infection, pericardial effusion (sp?) and all the problematic side effects associated with medications. At the moment mainly that of chronic steroid use...so I've developed cataracts, become osteoporitic and have struggled with my weight for years.
However, despite all the problems that lupus has thrown at me, I've fought to overcome them. I've had pulses of chemo to knock it back. Take regular exercise to keep my weight down, perform weight bearing/resistance exercises to stimulate bone growth, apply sun cream and steroid cream to keep the rash at bay and generally feel lucky to be alive and safe in the knowledge I have a great team of doctors and nurses listening and supporting me.
Although my disease is active constantly and there isn't a week goes by where it doesn't throw me some sort of problem I take control and completely refuse to let it win. But that's not to say I've never felt desparate, low and alone...hey I almost lost the plot just before christmas thinking it had attacked my stomach and after 6 hours in a and e I was only constipated!
So I'd like to hear from anybody, young people, old people, male or female who battle every day and manage to get to work (and get irritated by other serial sick takers!).....but dispite everything believe they have a life, with a problem they manage daily, not a problem they manage daily that has taken a hold of their life!......