After being diagnosed I was put on prednisone (steroid) 20mg/day and Plaquenil (anti-malarial) 400mg/day. I became very sick from these medications. My stomach was in knots all day long, I couldn't sleep (which really doesn't help when you're exhausted all the time anyway), and my hair started falling out more rapidly. There were more symptoms from Lupus too. I was freezing cold all the time and I remember on my days off work I'd take 3-4 hot showers a day in order to warm up. And remember, I wasn't in a cold climate, I was in Santa Barbara in May! I started to not be able to remember things too. When I was at work one day, I joked with my boss (who apparently was not a joker) about how I must be going senile because I needed to make lists of all the things she wanted done before I locked up at night. She didn't think it was funny. I also was itching from head to toe and could not stop it no matter how much lotion I put on. The rash on my face was quite unpleasant and, unsurprisingly, really hard to conceal with make-up. I trucked on for a month this way while working 40 hours a week at the animal hospital until I realized it was more than I could handle. I made the most heart wrenching decision of my life and told my parents I was moving back in.
I struggled with what to do with my life for a while after I moved back to Wisconsin. I had my heart set on being independent, not needing help, and becoming a fashion photographer all on my own. I wanted to change the way that women were portrayed in fashion ads from behind the lens, but I guess it just wasn't meant to be. I had to give up all of that and find a new dream, a new passion, and it wasn't easy.
That year in Wisconsin was particularly difficult for a few reasons. #1) I had no health insurance #2) I had a rhuematologist who didn't really care (but really, how many of them do?) and #3) it was freezing cold in the winter, literally below zero and my hands and feet were in SO MUCH PAIN. To put it mildly, it sucked. So for many reasons, one of them being my Lupus, my parents and I moved to Tucson.
1 comment:
I am so glad you are letting everyone know what it is like to live with Lupus. I think it would be hard for anyone to understand what it is like. I wish you would go into remission or better yet that the lord would heal the you from the Lupus. It is hard for a mother to watch their child going through something like that. It breaks my heart. You are and inspiration to any one that has the same problem or one like it. Keep up the good work. I love you
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