PATIENT STORY I am a Mom with Lupus

By Kimberly Wright

I was at the hospital the night my niece was born. Unfortunately, we weren’t at the same hospital! I was five months pregnant with my daughter Avery, and that week at work had been stressful. It was 2008, the height of the housing crisis, and we were facing layoffs. I was exhausted, and my chest hurt when I tried to breathe. Because my pregnancy was considered high-risk, I was admitted immediately to Ohio State University Hospital for an overnight stay and observation. All this happened while my niece was being delivered at a hospital across town! This was just one of the many times since I was diagnosed with lupus that I missed out on important events.

I was 22 when I was diagnosed with lupus; and thankfully, I only had a mild case. Symptoms included joint pain, chest pains, and some fatigue, but they were all very manageable. (I wasn’t new to having health issues. When I was 13, I’d been diagnosed with Spondylolisthesis and had back surgery). My lupus always felt like my back issues; they were annoying but minor inconveniences. This was true until I got pregnant, and then my diseases both came back to haunt me.

I was diligent about preparing myself for pregnancy. I worked out and kept myself strong; but even with my preparation, I had to schedule a c-section two weeks earlier than my due date. The doctors wanted to avoid the contractions and added stress and pain it could cause. When I was suddenly rushed to the hospital because of my lupus at five months, it occurred to me that this was a big deal. I realized that day that not taking care of myself, both physically and mentally, didn’t just affect me anymore but the life and health of my soon-to-be daughter. I’d find out very soon how serious this illness could be, and how quickly it could be much more than a minor inconvenience.

During my pregnancy, my doctor kept me on all my medications.

He said it was a greater risk to my health and the health of my baby to be off them. Synthroid for Hashimoto’s and Plaquenil for the lupus - my autoimmune diseases came in twos! Avery was born at a tiny 5 lb, but thankfully, she was healthy and happy. I wish I could have said the same for myself!

Shortly after Avery was born, I suffered from debilitating fatigue and serious joint pain. During this time, my mom and my husband were my sounding boards, but guilt set in on how much I was burdening them. My mom is the best support person anyone could have. Being the mother of a new mom with lupus is tough, and I am extremely lucky because I could not do this without her! However, I knew then that I needed to seek additional help.

After 10 years, I still hadn’t met anyone else with lupus. I felt like I was on an island, even with the support of my family. I knew I needed help in searching for other forms of treatment, but didn’t know who to turn to for help. Thankfully, I found the Lupus Foundation of America, Greater Ohio Chapter. The chapter sent me information about a clinical trial for Benlysta. I was enrolled in the trial shortly thereafter.

My labs immediately improved, and it was like I had a new life! I could play and have fun with my daughter with less fatigue. It made all the difference as a mom to have energy again! The trial lasted for a year and a half. But after it ended, we couldn’t afford the treatment, and I had to stop taking Benlysta.

The next year or so, I tried so many different medications. These medications didn’t work, or they worked but reduced my white cell count to dangerous levels. I continued to suffer and so did my ability to be the mom I wanted to be.

One night after picking Avery up from daycare, I had to pull over on the freeway because I was too tired to drive home. I heard my toddler say to my husband when he arrived, “Mommy can’t get up, she’s too tired, Daddy; she had to take some naps.” It was heartbreaking.

We are so lucky to have this perfect child, but we were faced with tough choices because of my lupus. We decided not to risk my health or ability to care for her, by not having more kids. However, we did see a light at the end of the tunnel. The drug company, who made Benlysta, removed income requirements and, after a change to private insurance, I could now get the treatment that had become a life saver! I could have more energy to be the mom I wanted to be.

Fast forward to today, I am a happy mom to an extremely skilled 14-year-old World Champion Irish dancer as a member of her Junior Figure team! She is amazing, and she is both empathetic and understanding of me and others around her. She understands I have a limited number of spoons (energy), even with Benlysta helping me. That is why we surround ourselves with people who get what it means to have an autoimmune disease and a finite amount of energy to spare.

Being a mom to an Irish dancer means a LOT of travel. The number of spoons it takes to drive! My best dance friend frequently offers to drive because she understands my condition. I trust her with my child when I just can not manage anymore. My friend has taken Avery to competitions when I have been sick; and she is her other mom when we are traveling, and I need to rest. Avery has accepted that I can’t always do everything everyone else can.

She has her other dance mom who gladly does “all of the things” in my honor to make sure Avery doesn’t miss out on the fun stuff!

Being a mom with lupus means surrounding myself with people who care and understand. I am extremely lucky to have a husband, parents, and friends who understand and support me.

I am grateful to the Greater Ohio Chapter and how they helped me find my people and my treatment. I am grateful how they allowed me to be an advocate by facilitating a support group for others like me! Avery has been my greatest supporter! She has joined me for every meeting, as has my mom.

I have a wonderful supportive community! It takes a village to be a mom with lupus, and I found mine through the Lupus Foundation of America, Greater Ohio Chapter!