In my middle school years, I developed tremendous joint and muscle pains and fatigue so bad that I would fall asleep in class. My medical care at that time came through the Emergency Room. My parents were told that I had juvenile arthritis. The situation worsened when I developed blurred vision, excess thirst and frequent urination. On April 4, 2004, I was so thirsty, that I drank 10 bottles of iced tea. That was the last thing I remember until I woke up from a coma more than a week later in the hospital. I learned that I had type 1 diabetes and lupus. I was only 13 years old and didn’t understand what was happening to me. No one around me understood the seriousness of my situation, and I was too young to follow doctors’ orders on my own. For a while, my life was a series of hospitalizations and stays at rehabilitation centers to manage my blood sugar. I received my formal education through home schooling, but finally I had to abandon even that, as I was too sick.
When I was 17, the worst SLE flare of my life came out of nowhere. I ballooned up with excess fluids. I learned that I had severe lupus nephritis, and I was put on a waiting list for a donor kidney. For a year and a half, I dealt with this situation, making frequent trips to the hospital via ambulance because I couldn’t get up and move on my own due to the tremendous amount of fluid in my body. Finally, one of my doctors administered rituximab, and within five days, I was half the size I had been. I could finally resume wearing shoes and clothing and abandon the bags on my feet and the hospital gowns. It took me about a year to get completely down to my normal size. I often wonder why those doctors who were taking care of me at the time waited so long to give me this medicine.
Eventually, I met the man who would become my life partner. When I got pregnant with my now nine-year-old son, I sought care from the high-risk pregnancy group at Weill Cornell, and that group of doctors strongly advised me to establish care with a rheumatologist at Hospital for Special Surgery. Dr. Michael Lockshin at HSS, who took my case, was a wonderful physician to work with at that time in my life and given my pregnancy. I credit him with the medication management that brought my lupus under complete control. Even my kidney function returned to normal, and I never did have the transplant that had been recommended. I felt like a normal pregnant woman and gave birth to a healthy baby boy. I was the happiest woman on Earth that day! Dr. Lockshin has stayed interested in my well-being over the years, even in his retirement.
The year before I got pregnant, I realized that I wanted to resume my education. I felt there was so much beyond my understanding, and I didn’t have the ability to ask questions of my doctors. I wanted to be able to take care of my future family and myself in a way that was not possible for my immigrant parents, who had done the best they could with what they knew. I got my GED and did a vocational program and went on to work in EMS. Over time, I have learned a great deal about my own medical condition through resources at HSS and elsewhere. In fact, doctors often ask me if I am in the medical field!
Three years ago, I transitioned to the care of Dr. Kimberly Showalter at HSS. I love working with her. She is amazing, and I trust her. She listens to my ideas about my care and follows up on what I ask. She is always available via phone or messages on the medical portal, even when she is not actually on duty. I feel safe with her. For any little thing that bothers me, as soon as she has results, she communicates with me and changes my medical regime when it seems appropriate. I credit her with keeping me out of flare. She helps me know immediately what to do if I have an issue, and she is patient and understanding. I feel that Dr. Showalter and I are partners in my health care.
I am now planning a second pregnancy. In the past, several doctors had told me that I would be risking my life with a pregnancy. However, the care that I have received at HSS enabled me to deliver a healthy baby and to stay healthy and strong enough to raise him through his early childhood. I know Dr. Showalter will be there with me over the next years, managing my care as my family grows.