Mommy, My Knee Hurts

Growing up, I learned early on that some families are plagued with health problems. When I was five years old my sister was diagnosed with Type I Diabetes, and our family was never the same again. Middle of the night emergency room visits followed by ambulance rides to the nearest children’s hospital 70 miles away became all too frequent for my mother and sister, and going days and sometimes weeks without seeing them became a common reality for me. The following year I had to be kept out of school for three months due to a very low, yet inexplicable, white blood cell count (I’ve since wondered if this is related to the rheumatoid arthritis symptoms I would later develop). When I was eight years old my sister, who wouldn’t become a veterinarian for another 20 years but who was already at that young age a diagnostician, noticed a prominent bulge in my throat and said she thought it was a goiter. She had recently developed hypothyroidism, and thought I might have it as well. I went to her endocrinologist, who did indeed diagnose me with Hashimoto’s disease, the same autoimmune condition she had that causes our thyroid glands to not make enough of the hormones we need to thrive. So at eight years old, I had my first diagnosed autoimmune condition.

Fourteen years later I would be diagnosed with rheumatoid arthritis, and a couple of years after that I was diagnosed with my third autoimmune condition, psoriasis. A few years later my sister, already contending with Type I Diabetes, was diagnosed with rheumatoid arthritis as well. It was no surprise to me when I read a study that found that people who have an autoimmune condition are more likely to develop an additional autoimmune condition than the general population, as are siblings of people with autoimmune conditions. (The most recent study I’ve seen with similar findings was in 2013.¹)

Coming from this perspective, I wasn’t always sure whether I wanted to have biological children. Shortly after my diagnosis, I was dead set against it. However, as the years went on, the desire to have a child became stronger and stronger. While my husband and I gave serious consideration to adoption, not only because of the genetic implications of autoimmune conditions, but also because I wasn’t sure that I would physically be able to handle pregnancy off of my RA meds, in the end we decided to have biological children. We were blessed with two amazing little souls, and I discovered an unconditional love so powerful that I felt like a new word needed to be invented to describe it, as the term “love” didn’t come close.

That overwhelming feeling of love and protection began when I was pregnant with my first child. When she was born, blue and still, I experienced a fear more raw and urgent than any I’d ever known. She was resuscitated by the NICU team, and quickly rolled out of my hospital room so that they could continue to work on her. My blood pressure was so low that it made it risky for me to visit the NICU to see her, so I relied on updates from the NICU doctor and nurses, who said my daughter was stable, and that they were searching for answers to what had gone wrong. When they brought me a photo so that I could at least get a glimpse of my daughter, and I saw the tubes coming from her nose and the IV in her arm, I began crying. As my doula cradled me in a hug, I sobbed, “Is it because she’s mine?” While the doctors searched for the cause of her distress, I worried that it was in the genetic makeup I’d passed down to her.

Fortunately, my daughter rallied, and beat everyone’s expectations of how long it would take before she could leave the NICU and then the pediatrics unit. Since her rocky start she has been incredibly healthy. She comes down with the occasional colds and flus that all of her little classmates pass around, but nothing out of the ordinary. However, my fears have never been able to completely dissipate.

My daughter was about two and a half years old the first time she said the bone-chilling words, “Mommy, my knee hurts.” If she complains of a tummyache or a headache I don’t get overly concerned, but when she reported pain in her joint, and I couldn’t find a corresponding boo boo to explain it, I worried that the culprit might actually be Juvenile Rheumatoid Arthritis. She has continued to thrive, tall for her age and very active. Yet, every few months she will complain of knee pain. It hasn’t been frequent or sustained enough for me to make an appointment with a pediatric rheumatologist, and the pediatrician thinks she’s fine. Still, I can’t shake the fear that I’ve given her the genetic blueprints for a lifetime of pain, swelling, and fatigue.

Living with rheumatoid arthritis is full of fear: fear of the next flare, fear of letting down loved ones through unfulfilled promises, fear that I’ll need a joint replacement(s), fear that I won’t be able to maintain the lifestyle I want, fear that I won’t be able to continue earning my current salary due to RA activity, fear of the impact the drugs I take to treat my arthritis will have on the rest of my body. Yet, the fear that I may have bequeathed this illness to a person I love most in this world is the scariest by far.