Hello from Mississauga, Canada
I have been diagnosed with having SLE since January 1999.
It all started for me one crazy day in January of 1999. We had just had an overnite blizzard and I stayed over at my in-laws for the night. When I awoke to see the tonnes of snow, I began shoveling my in-laws' driveway. Then I left for home... I got stuck a couple of times on sidestreets and had to shovel my way out... when I got home.. you guessed it.... I had to shovel my way into my driveway... I was, neeedless to say, very exhausted and decided to take a shower and go to bed... That evening I started not feeling so well. I wasn't sleeping well, I had lost my appetite and vomitted a few times... I wasn't sure what was going on. I let it go a few days.. and then I found myself very fatigued to the point I was falling asleep at my desk in my office... I couldn't understand it.. So I decided to go to a walk in clinic. The doctor listened to my chest and immediately sent me for X-rays... He found that I had one lung completely filled with fluid. He sent me right away to emergency and I ended up staying in the hospital for a month while the doctors tried to figure out what I had. It started with the pleural effusion... then I got pericardial effusion and I had constant fever. They first mentioned lupus and then for some reason ruled it out... thinking maybe it was TB... I went through many tests and even a bone biopsy and nothing came of them.. Then they sent in a rheumotoligist to review me.. He ran some more tests and discovered I did indeed have SLE. They put me immediately on IV prednisone and like a miracle my fever was gone. They then stuck a needle in my back and sucked out 3 litres of fluid from my lungs. It was crazy...
I ended up on the full dosage of prednisone for months and gradually reduced. Now I am on Plaquenil. My lupus seems to have been in some sort of remission until last year when the extreme fatigue and bone/muscle pains were constantly kicking in.... but now I think its back more than ever because I am suddenly developing the butterfly rash (which I never had before). I called my rheumotologist and explained this but he won't let me come in until September... not sure if I should be okay with that though.. I don't want to cause more problems..
I hate this disease as it has taken over my life. I now have a 4-month old baby boy and I can't spend more than 5 minutes at a time playing with him. I find it very difficult to even help my wife with him and to do basic house chores....
Hopefully spending time here will help me cope.. as it also seems difficult getting people to understand what I am going through.