Cynthia's Story
Please welcome Cynthia to the Sugar Surfing Blog. She asked us a few weeks ago if we would consider sharing her story with others and why not? Today you can read how she transformed from poor control to normal blood sugar levels and how she did it. If you have a story to share please send us a message using the form at the bottom of this page and we'll see how it fits into our publishing schedule. Thank you!
Hi, everyone! My name is Cynthia, and I have lived with type 1 diabetes for 26 years. My A1c is 5.4, and I show no signs of diabetic complications. But if you had met me 16 years ago, you would never have believed that my A1c would be normal today. Sixteen years ago, when I was a teenager, my A1c was 13.5. As a result, I started to develop kidney disease by the time I was 18 years old.
I was diagnosed with type 1 diabetes at age 8 in 1990 in Children’s Hospital of Orange County, California, down the street from Disney Land. In the days leading up to my admission, I was extremely thirsty. So thirsty I couldn’t stand it. My mom said the dry desert air was getting to me. I would sneak out of bed at night and drink glass after glass of milk because my throat was sore and the milk made it feel better. I felt like I was starving. I ate a whole pizza and drank a whole pitcher of soda pop in one sitting at a restaurant. I had to use the bathroom all the time, every five minutes. But that was hard because I was extremely weak by that point. We took a drive one Sunday afternoon by the Pacific Ocean. My parents stopped the car again and again to take me into gas stations to use the restrooms. The next morning, my mom called my dad at work and told him to come home right away—“Something is really wrong with Cynthia.” Everything was slow and foggy. My stomach hurt, and I threw up. When my mom dressed me to leave the house, she gasped. I was so skinny, she said afterwards, that I looked like a prisoner from a Nazi concentration camp. I was diagnosed 5 minutes after being wheeled into the emergency room. My blood sugar was over 800. I was in diabetic ketoacidosis.
My stay in the hospital started out in the Intensive Care Unit and lasted two weeks. There were a lot of needles. I tried not to cry. Everyone said how brave I was. The phlebotomist told me he was looking for a “big mama vein” in my hand. I thought that was a funny thing to say. Winnie the Pooh played on the Disney Channel. I liked the songs. I got popsicles every day, but then they also made me drink this nasty purple drink. We watched “The Adventures of Milo and Otis,” about a dog and a cat who were best friends, in the play room. Someone gave me a rag doll that was almost as big as I was. I named her “Josie,” and they put a hospital wrist band with Josie’s name on it on the doll’s arm so that we could match. At the end of the stay, I sat with my parents at a table with a nurse, who explained that I had a disease that I would have for the rest of my life. It could cause blindness and kidney damage and could mean that I could have a shortened life span. I decided not to worry about this. Then she presented us with a large binder with lots of different colored paper. There were all kinds of instructions about how much to eat, and what to do if you got sick, what to do if you went low, what kinds of blood sugar ranges to look for, how to test for ketones, how much insulin to give, and how to make up an emergency pack for school. The nurse slowly went through each section, taught us how to do injections and blood tests, and finished by telling us that we could go to a support group. Soon after I was diagnosed, we moved back to where we were originally from, Ohio. I didn’t realize it then, but until I turned 18 years old, that was going to be the only good diabetes care I would receive.
Moving back to Ohio meant a new house, new neighborhood, and new school. It also meant a new endocrinologist. I remember Dr. B as being extremely smart, chatty, and laid back. Almost too laid back. He would talk at length about his adult sons, the opera, and the Teenage Mutant Ninja Turtles, which, coincidentally, was also the theme of his office decor. Finally, he would get around to doing the examination and asking about my blood sugar levels, which were never good. I was also too skinny. Probably because the blood sugar levels were too high and kept me from gaining weight. What my mom really wanted help with, however, were those scary low blood sugar levels where I would become combative, sometimes convulse, sometimes go unconscious. “Well, did you test her blood sugar?” Dr. B. would ask my mom. “No,” said my mom. “Well, then how do you know she was low?” My mom always left those appointments fuming.
When I started high school, Dr. B. retired and was replaced by Dr. H. For me, a perfect storm was brewing. The innocence and carefree living-in-the-moment mindset of childhood were being replaced by questions I couldn’t answer, a deepening dread about my life and future with diabetes—the loss that I felt it was. One time in my ninth grade religion class, in an effort to make a point about the brevity of life, my teacher told a horrible story about how his older brother met this great girl and took her out on a date. The next day he called her to chat but was told by the girl’s father that she had died suddenly overnight from type 1 diabetes. “I’m sure you could explain to us a little better what happened to her, Cynthia,” he confidently stated. I was horrified. How the heck would I know what happened to her? Could type 1 diabetes just kill you in your sleep? Worse, I already felt like a freak, eating my snack of cheese and crackers every day at 10 in the morning in front of everyone, which was the only way the teacher had even known I had type 1 diabetes in the first place. I gave a helpless shrug, slouched down further in my seat, and thought I could feel the eyes of all the cool kids just boring through my skull. Another time a girl in study hall asked me why I tested my blood sugar. “I have diabetes,” I told her. “Oh, cool! My aunt died of that!” she chirped. “Oh, wow,” was all I could manage. Another teacher would corner me in the bathroom and tell me how her husband was having such a terrible time with his diabetes, and how he had also just had another heart attack. I felt like no matter where I went I became a lightning rod for people’s latest terrible diabetes stories about their loved ones.
Those stories might not have bothered me so much except for the fact that I was struggling miserably in my diabetes care. I wasn’t stupid. I knew what was going to happen to me as a result. Complications. I had a time line. Probably by my mid-twenties, I would develop complications and then be dead before age fifty after years of kidney dialysis and leg amputations. I would never be able to have kids. The truth was I was angry. How could I of all people end up getting type 1 diabetes? Of all the diseases out there, this was the worst possible match. I hated needles. I had no tolerance for pain. I hated the sight of blood—I couldn’t even watch Jaws for gosh sakes. I loved food. I loved to eat. I loved to cook. I was the type of person who would “Grandma cook”—a pinch of this, a pinch of that. And it always turned out scrumptious. I watched cooking shows religiously and read cook books for fun. Type 1 diabetes for me was like Beethoven going deaf. I struggled with routines, with keeping track of time, with details like measuring food and checking to make sure I would not run out of supplies, with record keeping. This disease walloped me on all my weak points.