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.
I began to despair. And then I rebelled. This disease just happened to me. I never did anything to get it. No disease was going to force me to do something I did not want to do. I was done with the shots. Any kind of life which required shots that hurt was no life I wanted. If I died, so be it. I used to go for sometimes up to two days without doing a single blood test. I would wait to give myself my insulin shot hours past when the last dose of insulin ran out. I remember sitting on the edge of my bed, weak and nauseated, the strong smell of ketones in my nose. Only when I felt like I was struggling to breathe, would I give myself a shot. It was always a gargantuan dose. I reasoned that it would both take care of the high blood sugar and also cover the whole box of cereal I was about to eat because I was so hungry, and maybe even delay the next dose a bit. This was how I handled the diabetes every day. The irony of all of this was that in the other areas of my life, I was the quintessential “good, responsible kid.” I didn’t party or hang out with the wrong crowd. I didn’t smoke, didn’t drink. I worked hard in school and regularly got good grades. I even won an academic scholarship to college. I had a part time job. My parents knew I was upset about the diabetes, but I don’t believe they realized how much harm I was doing to myself.
Whenever I went to see Dr. H., he always did a quick physical and checked my thyroid. We did not discuss diabetes. We did not discuss anything. That was handled by the nurse practitioner. She would look at my machine and its paucity of blood sugar readings and then tell me I should test my blood. “I know that!” I snapped at her one time. She gave me a polite smile and then turned to my mom. “Is she depressed?” she asked. “No,” said my mom. “She’s very silly at home.” Another time she tried to tell me about what I now know is the Diabetes Control and Complications Trial. She told me that if I could just “do better,” I could maybe reduce the chances of diabetes complications by 50%. But this only backfired for me in every possible way. I thought that even if I were to figure out how to “do better,” which to me simply meant getting more shots, there was still a 50% chance I would get the horrible diabetes complications anyways. It might be worth it to “do better” if there were a 100% guarantee that I would not get the complications. But with stats like this, the chances of developing complications appeared to be just as arbitrary as getting the disease itself. I sank further into helplessness. At this time, my mom heard about the insulin pump from my cousin who also had type 1 diabetes. My grandparents offered to pay for it out of their retirement savings, as our insurance didn’t cover it. My mom asked if Dr. H. would put me on the pump. We were told that he “didn’t do insulin pumps.”
Finally, I began my senior year of high school. My eighteenth birthday was quickly approaching. Our health insurance gave us the option of either continuing on with a pediatric endocrinologist until I was 21 years old or switching now to an adult endocrinologist. My mother found an adult endocrinologist five minutes away from us at St. Thomas Hospital. “I think we should switch to this new doctor,” she said. “I don’t think Dr. H. is really helping.” “Sure, whatever,” I said. But I knew that in the end, it didn’t matter.
Shortly after my birthday, I found myself sitting in the hospital exam room at St. Thomas. It was drab, worn, and displayed the gray, industrial skyline of Akron through the giant window. The room looked like how I felt. Suddenly, the door burst open, and to my mild surprise, the youngest doctor I had ever seen briskly strode through. He dropped down onto the rolling stool, wheeled closer, and immediately asked for my blood testing machine. I turned it over. Dr. S. looked at it for 2 seconds and then waived it in front of my face. “Okay! This belongs in a museum!” What followed was like nothing I had experienced before. A lot of very detailed questions. Questions I didn’t know the answers to. Questions like what were my blood sugars before breakfast, before lunch, before dinner? What exactly was I eating? How many carbs per meal? How much insulin per meal? How many times did I test a day? How much insulin did I give for a high blood sugar? What did I do for a low blood sugar? I stumbled through the answers as best I could without having any. Finally, Dr. S. gave me a look I couldn’t quite decipher, paused, and then picked up my Smithsonian Museum relic of a blood testing machine. He flipped through the memory function and set it down. “You are going to get me some labs today, downstairs. I will call you as soon as I get the results. In the meantime, see this?” He held up a sheet of white paper with what appeared to be some sort of graph covering the whole thing with the days of the week written in on the margins. “You are going to test your blood sugar before breakfast, before lunch, in the afternoon, before dinner, before bedtime. You are going to write these all down. At the end of the week, you will fax these over to me. Here is my fax number,” he tapped the top corner. “I’m going to go over all of your readings and determine what you need to do.” I looked at him blankly. “I’m going to help you.”
I didn’t have long to wait before Dr. S. called my home. My mom took the call and told me that he had done something called a hemoglobin A1c test and that the result was 13.5. I had never heard of a hemoglobin A1c test before. My mom said that Dr. S. told her that a 4 or 5 result was what people without diabetes had. 4 or 5 was normal. “He told me to order you a book called “Sugar Busters.” He said you should read it. He also said you need to test your blood whenever you are curious about what it is. He said to be curious all the time.”
I’d like to say that I perfectly complied with Dr. S.’s requests to test my blood sugar regularly and fax in the results, but unfortunately, my efforts, while better than before, were still hit or miss. Dr. S. told me he wanted me to have an insulin pump but would not authorize one until I actually tested my blood sugar consistently. Several months later, I received a call from Dr. S. regarding the results of some new lab work he had ordered for me. My kidneys were leaking protein. This meant kidney damage from the diabetes. I was floored. Kidney damage? As in kidney disease? I mean, I knew I would get complications, but I was only 18! Dr. S. told me he was going to put me on a medicine called Zestril, which I would have to take every day for the rest of my life. I was distraught. I was going to die sooner than I thought! But then it hit me, and I realized—I didn’t want to die! Even if I did have to take shots that hurt, I wanted to live! I started to take the blood testing and record keeping and faxing every week to Dr. S. seriously. Within a few months I started the insulin pump. It was such a relief to eliminate all of those shots. The insulin pump put a stop to my pattern of putting off insulin injections until the last possible moment. Now, I didn’t have to do a new injection every time I needed insulin. There was nothing stopping me from taking as many doses a day as I needed to manage my blood sugar levels.
As time passed, however, I fell back into old patterns. I grew comfortable with using the pump and gave insulin haphazardly without testing my blood sugar first. Nothing too bad had happened yet, especially when compared to how things used to be, and anyways, I had Zestril to protect my kidneys, so why test as much as Dr. S. wanted me to? It all came to a head a few years later at an office visit. By now, I understood that I had to have the blood sugar results written down on Dr. S.’s blood sugar log so that he could review it as soon as the appointment started. The only problem was I had barely tested my blood sugar. I didn’t want to lie, so the blood sugar log reflected how little I truly tested. “Where are your blood sugar readings?” demanded Dr. S. I looked down at my hands. I think we both knew “where” my blood sugar readings were. “You know,” he said more quietly, “I am doing everything I can do for you, but…” He went silent. I looked up to see him standing against the examining table on the other side of the room, arms folded, looking at me and frowning slightly. Finally he shook his head and shrugged. “I just hope the light switches on for you before it’s too late.”
In that instant, his words burned themselves deep into my brain. I knew that I had been given a precious second chance. I now had a doctor with a problem solving mindset, who believed that not only was it possible to do better in general but also that I personally could do better, and who was willing to do what he could in order to help me achieve that. I was blessed to have insulin, an insulin pump, a blood testing machine, and blood testing strips. I had Zestril for my kidneys. But as much as all that was, it could only go so far. No one was going to drive to my house and test my blood sugar for me. I had to do it myself. I had to master Type 1 diabetes so that I could live. That was science. That was a fact. But to do this, I had to master myself. I had to be better than I am. And I knew deep down that I was the only one who could make that choice. And so that day, I chose to try. And then I chose to try again the next day. And then I chose to try again the next day after that.
A whole decade passed before I figured out how to get a normal A1c. My kidneys healed. I no longer take Zestril. It was a lot of work, but I feel wonderful and look forward to the future with optimism and hope. I was blessed to meet a wonderful man who married me. And then we were blessed with healthy twin boys, who will turn 2 this October. As for Dr. S., he is still my doctor. When he discovered my A1c result had improved to 5.3 a few years ago, he smiled and exclaimed “Superstar!”
Getting a normal A1c—you can do it!
I wrote the above to show that I am a very normal person with type 1 diabetes with all of the normal struggles that other people with type 1 diabetes have. That being said, it is very possible to get a normal or near normal A1c, even if you have type 1 diabetes. One of my favorite quotes about this is from Dr. Richard K. Bernstein, who himself has had type 1 diabetes since age 11 and is 82 years old—and his A1c is 4.9! He says, “Diabetics are entitled to the same blood sugars as non-diabetics.” I really believe that.
I want to emphasize that there is an immediate pay off to normal blood sugars beyond your peace of mind about the future. Once achieved, I started to feel awesome! You feel so great, it is addictive! If your A1c is 7, for example, you do not feel good. And you don’t even realize how bad you feel because it is what you are used to. Non-diabetics in the medical profession who tell you that an A1c result of 7 is fine don’t know what they are talking about. If they had diabetes, they would never say that because they would feel so terrible. For example, with an A1c result of 7, you are hungry all the time. You are hungry when you are high, even if you just ate. You are hungry when you are low. You are hungry when you are dropping from high to low. With a normal A1c, you are much less hungry and don’t think about food as often. With an abnormal A1c, your mood is affected. One of the ways I can tell if my blood sugar is at 150 or higher without a continuous glucose monitor is if I suddenly feel depressed. Being low makes me feel very sad. I am happier and more even-keeled with a normal A1c. Another huge point about an abnormal A1c, even one as low as 7, is the total lack of energy you have. I remember sometimes feeling as though I was too weak to pull on my socks in the morning. I also used to get brain fog. When my A1c is clinically normal, I feel mentally clear and have energy to burn. Another important point is sleep quality. You cannot get a good night’s sleep and wake up feeling rested and refreshed if your blood sugars are high all the time, low, or fluctuating from high to low and low to high.
I also want to tackle the common objection that people have to what it requires to get a normal A1c, which is, “Isn’t that a LOT of work and sacrifice?” Short answer: yes. But have you ever considered how much more work and sacrifice it is to have an abnormal A1c? The truth is, if you have diabetes, you think about it all the time, no matter what your A1c is. The difference is that with an abnormal A1c, you are thinking about it because you are reacting to how bad you feel, how much it is interrupting your schedule, whether it’s safe to drive just now, or go to sleep, or how you will have to call off work again because you just had a catastrophic low blood sugar and feel like you got hit by a freight train, or even how your kids are going to have to hang tight for a few more minutes, because you are too ill to help them. Having a normal A1c does not completely eliminate these realities of having diabetes. But it vastly improves them. With a normal A1c, you make a decision to put all of your work and effort into pro-actively heading off bad situations before they start, and certainly before you develop complications in the long run.
One other quick point. I’ve heard a lot of people say—even medical professionals—“Isn’t that a bit extreme, to do all the things you do to get a normal A1c?” I hate this objection. Have you ever read what Hollywood movie stars do to get those perfect figures and look like they are 20 years old when they are really 50 years old? And they do these things for their careers! Or what about athletes? No one says, “Gee, LeBron James, you are really too extreme. Stop exercising on your vacation for several hours a day, and while you are at it, just eat whatever you want.” No! Everyone knows that LeBron James works hard to win for Cleveland, and the fans think it is worth it. How much more important than a career or championship trophy is your health? And not just for you, but also so that you can continue to be an important part of the lives of your loved ones. Do it for your loved ones.
O.K. so what does getting a normal A1c require?
The following is what I do, every day. But don’t take my word for it. Experiment on yourself and find what works for you. As a person with type 1 diabetes, you are a walking laboratory for scientific experiments. That sounds horrible, I know. But over time, as you study yourself, integrate that information, and make improvements, you will have successes. And you will start to realize how interesting type 1 diabetes is and how interesting the human body is. I have noticed that people with type 1 diabetes who have normal A1c results also take a very keen interest in th