21 with Lupus Nephritis ( my story )
Hello everyone, I guess I'll start off by introducing myself. I am a 21 year old female college student who was just recently diagnosed over the summer 2013 with lupus nephritis (stage 4) and sjogren's syndrome. It all seemed to hit me all at once. First, it started out with my feet and hands swelling up. But I didn't make much of it because I just thought I was working too hard at work. Then I began to notice how tired I was at work. I never get tired at work and let alone feel tired throughout the day. So I went to go see my university doctor who found protein in my urine and told me that it was one of two things: an infectious virus or lupus. She went with the virus. I was prescribed some pills and went about my life. Two weeks later I was hospitalized due to the extent of my pain. I couldn't walk, my feet were swollen, and I could barely keep my eyes open. While in the hospital, I developed (what I like to call) my leopard prints rashes. But somehow I developed a blood infection and my skin rash on my neck spread onto my face and blistered up to what looked like Freddy Kruger. After about a week and 8 doctors later, they finally came to the conclusion that I had SLE. I was put on plaquenil, prednisone and a bunch of other meds. However, my fatigue didn't get any better and I started to develop extreme side pains. I went to see a kidney specialist, had a biopsy, and was then diagnosed with Lupus Nephritis: Stage 4.
For me, the hardest part was dealing with all the mood swings from my medication and lifestyle change. I went through a really long period where it was just one pitty party after another. I hated the weight gain, the skin scars, and most of all my hair loss. I hated that I couldn't live my active lifestyle of hiking and being out in the sun anymore. I was so angry at nothing and became even angrier because I knew how silly it was to be angry. But mostly I hated that I had this life plan of mine all finally figured out and then BOOM it all had to change. I had to take a semester off school, live back at home, and change almost everything I did. Lucky for me, my mom and my boyfriend have been there throughout this whole process and helped me through the depression. I'm still occasionally struggling with my self-esteem because of the changes, but the knowing that this is temporary (as far as the way I look) and will get better over time, keeps me happy and thanks to my amazing rheumatologist and nephrologist I am now back in school and living on campus again.
I tell you all my story because I hope others read it and feel better that they aren't going through the same situation alone. Because that's what I felt when I read some of these posts. I felt a sense of relief that I wasn't alone in this.