nancyvener
Supporter

What do you want others to know about lupus?

I am doing great now, I have had 3 bad flares, but have been in remission for about 25 years with no complications. The last flare I had I was 34 was in the hospital for 2 months, it affected by kidney function and had to have 3 dialysis treatments, then was on alot of steroids and other medicications, and was very bloated. I had had excellent treatment since

Why is lupus a cruel mystery to you?

I did have a baby, she was premature, but a healthy child, who is now a strong woman, 29 years old and a Captain in the army in Kandahar, Afghanistan. I owe alot to my parents, especially my mom who stuck by me and helped me raise my little girl as I was a single mom. I have learned to stay out of the direct sunlight and when I go out I wear a big white hat and lots of sunscreen and cover up, I dont go to places like the beach during the day but have been on cruises and have managed. I am on meds for blood pressure and diaretics and my doctor constantly checks all my numbers and especially my kidney function. My kidneys are not perfect but they are good and much better then when I was sick. Most of the time I dont even know that I am a lupus survivor, I have learned to manage my life and live normally but eating well, exercising daily, walking, and trying to avoid stress. I get a flu shot every year because that is how I got my last flare. I watch my weight carefully, my sugar levels are low, especially since I was on steroids for so long. It is managable, it is doable but you have to always get rest and take care of yourself above all. if anyone wants to talk to me, you can email me, My life the past 25 years has been healthy, happy and well, but if I am tired I know that I cannot push myself.

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