Lupus can wreak havoc on your life, especially if you are a busy, working mom. One of those busy moms shares her story with us here.
Lupus is a very tricky disease. At age 14, I didn’t think waking up with a stiff neck was a big deal until three doctor visits later (including a trip to the emergency room), I was told I had lupus. I was in 9th grade, trying to manage schoolwork, lupus, AND a social life! It was a struggle just to get up and make it through a whole day of school. I passed my GED and after that, received my medical assistant certificate. About that time, my doctor put me on a chemotherapy drug called Cytoxin. Even though it was my only option at the time, it was a hard decision, considering I was only 17 years old and this drug would leave me with only a 30% chance of being able to have children.
I did get pregnant, but lost the baby at 36 weeks. I worked hard to move on and two years later, I was pregnant again and showed no signs of lupus. Not sure what to do, I came to The Women’s Health Group and they helped me through the pregnancy (and two more!); all healthy pregnancies. After my third baby, my lupus ‘flared’ again. A flare is when the severe symptoms start to ‘flare up’ and remind you that you have lupus. Now I was struggling with a fulltime job, raising three kids, AND the lupus! The hardest part is when I am in pain and trying to carry out life’s everyday tasks and deal with the side effects of the medication. Kids think moms are unstoppable and have no pain; moms heal the pain and scrapes; they don’t have them. One of the hardest days was the day I had a severe leg cramp and my husband had to drop everything and run to help me. I had tears in my eyes from the pain and fear, but my heart broke when I saw how scared my kids were, seeing their mom in such intense pain.
Knowing my children may develop lupus is frightening, but with the support of my husband, my mom, family, and friends, I manage to deal with the lupus, my children and my fulltime job. I try to remember I have lupus; lupus doesn’t have me…and some days I forget I have it at all. Those are the best days.
Addendum, May 2012: Since we first posted this story on our website, this mom is trying a new drug, Benlysta®. This is an infusion drug (administered by IV) given monthly after the first three closely spaced doses. As with any drug, there are many scary side effects, but she is starting to feel better and life will be as normal as possible with a busy family life and hectic job.