The First Two Years & My Diagnosis

The first year was full of typical life with a newborn--lack of sleep and round-the-clock feedings. Both sleep and feedings slowly transitioned to longer durations. In addition to the regular baby check-ups, we had pacemaker and cardiology appointments.

Due to the steroids circulating through my body and the placenta, Grace had to be weaned off the steroids after birth. She was also initially on Lasix (http://en.wikipedia.org/wiki/Furosemide) and Digoxin (http://en.wikipedia.org/wiki/Digoxin) for her heart, but within a short period, she was taken off of those too. Over time and positive feedback on her appointments, my outlook on her future became more positive. Grace was still quite thin. She did not have the stereotypical healthy baby look about her—no chubby cheeks or legs. Strangers often commented on how little she was. I did not admit it, but I was sensitive about it. I knew she did not look healthy.

The Army gave Bill an opportunity to move to Fort Benning, Georgia (we were living in Washington state), and I asked him to take the position. With family in North Carolina and Georgia, I knew I would not feel so alone. We made the move when Grace was ten-months-old. We had a huge first birthday party. Grace was walking, and life was much better.

Over the course of time, my exhaustion did not go away. I attributed it to a host of things: having an infant, the move, and a new job. When Grace was about eighteen-months-old, I started experiencing mild dizziness as well. I finally went to a physician. Two-months later I discovered I had developed Primary Sjogren’s Syndrome. This diagnosis was not a complete surprise, and now I knew the source of my symptoms. For more on Sjogren’s Syndrome, please read http://www.sjogrens.org/home/about-sjogrens-syndrome . With medical treatment and lifestyle management, I began to feel better over the next year. The road to some recovery contained a good deal of trial and error. I came to the realization I could not do some of the things I used to do; my stamina was not the same. Life had been altered, but over time we all adjusted.

Grace continued to grow and progress as a normal toddler. She brought much adventure and laughter into our lives.