When the Caregiver Needs Care

At first glance, many might say that our family appears totally healthy. However, my daughter Bella, 13, fights neuromyelitis optica (NMO) every day, and despite being her caregiver, I have health issues of my own.

When Bella got sick in August 2017, I was almost done with the classes required to have weight loss surgery. I had been morbidly overweight since childhood, and none of the diets or exercise regimens I tried ever helped. When Bella was in the hospital, I kept thinking about how much she’d need me now that she was sick. I knew I needed to be healthy for her, as well as for my husband and older children.

So, in December 2017, I received gastric sleeve surgery and was excited to have a new healthy outlook on life. I’d not only be there for Bella as she fought NMO, but could also become a healthier version of myself.

Unfortunately, I began having complications just a few months after surgery. I dealt with an esophageal stricture, bleeding ulcers, and excruciating pain in my stomach. I was rapidly losing weight, but only because I couldn’t eat anything. I vomited back up any food I ate. I couldn’t even keep water down!

My illness and malnourishment made me unable to work. But as Bella’s caregiver, I still had to take her to doctors’ appointments, intravenous immunoglobulin (IVIG) infusions, physical therapy, and school, as well as learn everything I could about NMO. Plus, I had many other responsibilities as a mom and a wife. I was caring for my family, but I needed to care for myself, too.

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Four years later, Bella has made much progress, including relearning how to walk, swallow, and talk. I still struggle with health issues (I’m currently recovering from yet another stomach surgery), but I’ve lost over 160 pounds, gone down 18 clothing sizes, and endured more surgeries than I can count on two hands.

I’m finally learning how to manage both my health and Bella’s health, but doing so has been the most difficult part of this journey.

For instance, there are times when Bella is receiving her IVIG infusion and I have to run next door to the University of Colorado Hospital for my own appointment. While I was receiving total parenteral nutrition through a PICC line last month, Bella became ill with COVID-19, so we were in the hospital together. This week, Bella will have her infusion and her annual appointment at the Multidisciplinary Clinic at Children’s Hospital Colorado, and I will have a follow-up appointment for my stomach.

The most important advice I can give to other caregivers is to keep yourself healthy and ask for help when you need it.

We are extremely grateful for all of the friendships we’ve gained since Bella was diagnosed with NMO. She’s connected with people all over the world, and will have the opportunity to meet many of them in person at the 5th NMO Awareness Gala in Boston next month.

We’ve also received amazing support from friends and loved ones. Caregiving would be much more difficult without their help!

Although being a caregiver with health issues comes with many challenges, I try to navigate them all with love, strength, courage, determination, and positivity.

Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder (NMOSD).