It may have taken years but I am coming back!

When women with Rheumatoid Arthritis (RA) get pregnant, their RA goes into remission. At least that’s what my doctor told my husband, Robert, and me when we went in to discuss the possibility of having a baby. At that time we both were professors with busy careers. I was 28, and according to my doctors, my RA was on “cruise control” with the help of Humira. Thus, we were given a big “thumbs up” from the medical community to get pregnant. I would not trade our son for the world, but boy were they wrong!

There was no remission for me, not unless remission means running head first into kidney failure and an abrupt pause in my career. After many months of baffled doctors, biopsies, and blood tests, I was diagnosed with Essential Mixed Cryoglobulinemia Type II – a complication of my RA that was causing kidney failure. I was officially the complicated, rare case “only found in medical journals”. In other words, my bewildered doctors and nurses all but labeled me a freak of medical nature. After being in the hospital for two weeks with out of control edema, swelling, that resulted in 50 pounds of excess fluid filling my body, I had to have a C-section just 28 weeks and two days into my pregnancy, and our son, William, was born at an astonishing one pound 15 ounces, a micro-preemie who fit in the palm of my hand.

The days that followed were like living a triathlon loop of professional obligations, myriad doctors’ appointments, and timed visits to the Neonatal Intensive Care Unit (NICU). All of this kept my husband and me on the verge of collapse, tears, and, in the good times, utter and joyous thankfulness that things had not gone as badly as they could have. While our son suffered a few setbacks, he remained in good condition and slowly grew stronger by the day. I will never forget the first time I got to actually hold him. For most mothers, holding their newborn child is a reward granted soon after birth. I, however, had to wait two weeks before I could hold my baby, and then I was only allowed to for thirty minutes a day. Those daily thirty minute doses of motherhood became the center the whirlwind of my life revolved around.

Then finally the day we had been waiting for came. Sixty days after William was born, he came home from the NICU on my 30th birthday. The best gift ever! Fortunately, he had very few complications after coming home and has grown into robust, happy four year old who is as smart as he is cute. I, however, remained sick, very sick for years. This is why I am on a mission to find every possible tip and trick to make chronic illness and motherhood as joyful as healthy mothers who do not have to juggle medical issues as well as motherhood and careers or simply motherhood, a full time job in itself.

My mission has been a roller coaster but I am pressing forward and with the help of a solid medical team and a combination of Remicade infusions every 5 weeks, Cellcept daily, and a relatively small amount of other medications (opposed to over a dozen when Will was first born). I have been able to write a practical book to help other moms with chronic illness titled How to Be a Good Mommy When You’re Sick: A Guide to Motherhood with Chronic Illness (MSI Press) and am preparing for my re-entry into academics as an Assistant Professor of Reading at a State University in August. My struggle with RA is daily but despite setbacks, I will continue to fight for the life I want to live as a loving mom, wife, and professional.

Emily Graves

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