Deb N. - Diagnosed Age 26

My name is Deb. After high school, I worked and went to school full time. I remember getting pretty run down during the last year of college; I felt exhausted and disoriented at times. I went to my MD, and after many tests over months, including a bone marrow biopsy, I received the diagnosis of SLE. I remember being relieved because my fears were that it was cancer or HIV. I had 5 of the criteria for lupus including the positive ANA. I remember telling my boss how relieved I was and she was shocked. She said "Deb, this is not a good diagnosis." That's when I started to read and research resources. I thought if I keep my stress down, slept a full 8 hours, take care of myself, and really manage the stress I should be fine for a while anyway.

My MD told me if I was thinking about having kids, do it sooner than later. So, I had my son right away. I've always been more tired than others, and rest more than others, but for the most part managed okay until 3 years ago when I was diagnosed with Raynauds and Sjogrens. I still felt like I was at least above water until this year. My blood work is all over the place, my hair is thinning, I ache every day, the exhaustion is unmanageable. I'm not reliable anymore because I never know how the day is going to go. Most days getting ready for work requires me to sit down after and convince myself to have enough energy to drive to work. I've seen more specialists in the last two months than I have seen doctors over the past 10 years. I cannot get life insurance - I keep getting denied. I am a Director for a non profit agency and am questioning how much longer I can do this, the exhaustion makes it difficult to concentrate in any way. Where I live nobody has heard of lupus. The lupus life is an ever changing journey, but I'm committed to myself and my health. After years of putting everything else first, my body is forcing myself to put myself first.