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Thursday, August 28, 2014

My Story

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”. 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 toddler who is as smart as he is cute. I, however, remained sick, very sick. 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. 

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