I was diagnosed right after my third child was born, and I had a few sore joints. But then I developed a strange very bright red rash across my cheeks, known as a Butterfly Rash. It was so traumatizing for me, I never wore make-up back then, so when I would go out kids would stare at me ... I know how terrible it looked … I saw it every morning.
I started to lose my hair about two years later. It would cycle ... I would lose it on top then it would grow back. It happened at the beginning of summer the whole time we were in California, I know now it was the sun and of course I didn’t wear a hat. So now I occasionally get a face rash and I live with pain daily. I know when my lupus is flaring cause my hands or wrists will hurt so bad I can’t either make a fist or I can’t open my hands. I am in a serious flare at the moment. I started prednisone, but it doesn’t seem to be helping. I will see my rheumatologist Monday, and hopefully I can get some good drugs to dull the pain. I worry that I will have to quit my job. Even though the thought of not having to work is nice, I would miss it. I just lost my mom the end of February—she also had lupus that affected her kidney and she was on dialysis for six years. She also developed vascular dementia, and in eight months she declined in health and finally passed away very peacefully in my home with me beside her holding her hand. She didn’t even know I was there. I’m scared every day that I will also lose who I am and be a strain on my family. I see it already when I am having a flare like now and I can barely walk down the stairs, or I need my daughter to towel dry my hair cause my hands hurt so bad I can’t hold the towel. It’s not always this bad, most days it’s just minor aches. I love my life and love my family, and am so thankful that we are as close as we are. Feel free to contact me if you have any questions. I won’t have all your answers but maybe someone to talk to that is going through the same would help you.
