January 1, 2009

As I wrote in my introductory column, the first question I asked my doctor when I was diagnosed with type 1 diabetes at 14-years-old was,

“Does this mean I don’t have to play sports?” I was hoping that one benefit of having this disease was that I would be permanently excused from running sprints and doing drills for field hockey. Of course my doctor told me no, I would still play sports and that in fact, exercise was one of the most important tools to manage diabetes. At the time I was disappointed but before long I started running on my own, even on the weekends when we didn’t have practice.

I think I started running because I knew it would bring down a high blood sugar but I eventually discovered that running allowed me to have more freedom with my diet, if I ran, I might be able to have some of the popcorn with my girlfriends later that day. I discovered that I enjoyed getting outside and feeling the sun on my face as I ran along the dirt roads of high school, the mountain trails in college and along the beach as a grown woman. I began to enter races, first a 5k, then a 10k and eventually a marathon. Training for the marathon was one of the most challenging tasks I’ve ever undertaken and I remember how frustrated I was with the lack of information about diabetes and exercise available to me. Thankfully all that has changes and there are wonderful websites and books about the benefits of exercise such as: The Diabetes Exercise and Sports Association at www.diabetes-exercise.org, and The Diabetic Athlete and The 7 Step Diabetes Fitness Plan among others by Sheri Colberg. (http://www.shericolberg.com/books-publications.asp) We have positive role models such as distance runner Missy Foy and Olympic swimmer Gary Hall Jr. There is a wealth of information and I am just giving you a place to get started....

It’s been nearly 25 years and I am still running. Running has helped me re-connect with my body in a positive way, and over the years I’ve began to see my body as healthy instead of sick, strong instead of weak. If you are new to diabetes and are wondering if this means you get to sit on the bench for the rest of your life like I wondered, I’m here to tell you no. Exercise is one way you can take control of this disease, one way to make yourself feel good and strong and fit and healthy. Here is to a healthy 2009!

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12/24/2008

 

I will never forget watching the movie, Steel Magnolias. It came out in 1989, the year I was a senior in high school. I’d been living with diabetes for 4 years at that point, and went to the movie with a friend. I remember sitting in the dark theater and feeling my throat tighten as I watched the scene where Julia Robert’s character Shelby is at the hair salon and starts to get low. Everyone rushes around; I think her mother (Sally Field) brought her a cup of orange juice to drink, and Shelby drooled and fumbled with the drink, slumped in the chair. I hated that scene. I hated the way Shelby looked and acted and thought, they’ve got it all wrong, that’s not how I look! But how did I know that I didn’t look like that when I was low? I’d never seen myself. I’d seen my sister get low a few times and her eyes didn’t roll back and she didn’t look like she was convulsing like they made Shelby look in the movie. But still, it was never pretty.  In the end, as a young mother, Shelby died. When the lights came on in the theater I grabbed my coat and hurried outside into the cold air to catch my breath. I don’t think I said anything to the friend I was with, but I can’t remember. I do remember that I went home and cried to my mom about being scared that I would never be able to have children. In all the horror stories I’d heard about diabetes, no one ever said anything about dying as a young mother.

When I was diagnosed nearly 25 years ago, one of the only diabetes magazines was Diabetes Forecast and I never wanted to read it because whenever I did, I saw photos of older people and advertisements for diabetic socks. The magazine did not speak to me, a 14 year-old girl. I wanted to read Seventeen, not Diabetes Forecast. The only other person I knew who had diabetes was my younger sister (who at 10-years-old drove me crazy!) and the head nurse at school-an older woman in a white dress and hospital shoes. I wanted to see someone with diabetes like the girls in Seventeen Magazine, someone who could help me change the way I thought about the disease.....and as the years went on, I wanted to see a young mother.

Thankfully media stereotypes have changed since 1989, but they still have a long way to go. Today we have Halle Berry (although she’s not sure if she’s type 1 or 2), Nicole Johnson, Miss America 1999, Elizabeth Perkins of Weeds, Michelle McGann and Kelli Keuhne of the LPGA. We have Diabetes Health, a great magazine that is honest, educational and inspiring and features photos of healthy, active young people. But we still need more. We need young women having healthy pregnancies, we need to see more faces of young, healthy women on the front pages of diabetes magazines so that the newly diagnosed can see themselves that way too. It’s about time.

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12/02/08 (Amy)

In October of 1985, I was living away from home at a private, boarding school. I’d only been at school for six weeks when I got sick. I was thirsty, tired and my eyes were blurry. I went to the infirmary, and they told me I had the bug that was going around campus. But back at my dorm, I was so thirsty I began to dream about water. So I returned to the infirmary and when they realized their mistake, they called my mom to come and pick me up. At fourteen-years-old, I was diagnosed with type 1 diabetes.

“Does this mean I can’t play sports?” I asked my pediatrician. Mom had taken me the hospital close to our home in Vermont. I was in a room in the children’s ward where the walls were painted with Sesame Street characters. I wanted to know how my life was going to change; would I be like Deenie, the girl who had scoliosis in the book by Judy Blume? I needed to recognize how I would be different from the others. I remember feeling almost excited, as if this disease that didn’t seem too bad, and would make me special, the girl who couldn’t play sports. I wanted to know if I would I be like my friend Laura who had pins in her hip from a drunken driving accident where she’d been thrown from the back of a station wagon through the front windshield of her friend’s car. Laura wore the field hockey uniform but sat on the bench, she helped with the equipment and water barrels. Would I be someone who sat on the bench? How would anyone know that I was different? How would I know my own differences?

“No,” my pediatrician said. “It means you have to watch what you eat, give yourself insulin and exercise every day to control your blood sugars. It won’t keep you from doing anything your friends can do.”

 

“Oh,” I said and pulled my knees close to my chest.

 

I remember all this like it was yesterday. I remember the room with Grover’s smiling face and feeling embarrassed but comforted to be in the children’s ward, as if nothing bad could really happen in a room with Sesame Street characters watching over me. But the next morning when the diabetes educator came in to teach me how to give myself a shot, how to test my blood glucose and how to eat, I knew something bad had happened. My younger sister was diagnosed with type 1 diabetes six months earlier, and so I’d seen her perform all these same tasks, but I’d ignored them too, not really wanting to understand what she was dealing with. (I was a teenager after all, too cool to spend any time with my sister.) So when the nurse spread the plastic foods across my hospital bed tray and began to talk about starches, food exchanges, carbohydrates and free foods, I wanted to put my fingers in my ears, close my eyes and make her go away. I wanted to know why me. Why me?

 

Over the next few months, I struggled to figure out how to eat, give my shots test my blood sugars, exercise, manage my highs and lows and act like everyone else. Eventually I stopped asking why me. This October was twenty-four-years with diabetes, and I am still learning. The thing with diabetes is that you never get to the top of the mountain. You never reach your goal of perfect blood sugar control. Some days are good and some days are bad. The cure my doctors promised I would see has not arrived, but the isolation I used to feel has shrunk thanks to support groups like Diabetes Sisters, Tu Diabetes and Yahoo groups. Even though my sister is still the only other woman with type 1 who I see face to face on a regular basis, I have countless women I can reach out to with the tips of my calloused fingers. Remember that the frustration comes and goes like the tide, but you are not alone.

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11/18/08

This fall is my twenty-fourth year of living with diabetes. I have been a type 1 diabetic for longer than I lived without it. I can’t remember what it feels like to eat without thinking, counting, pricking, and injecting. I can’t remember what it feels like to run without carrying candy or drive without testing my blood glucose first. Last night on the evening news Brian Williams spoke of exciting new research for type 1 diabetes. I raced from the kitchen where I was cooking dinner because I wanted to be excited. However, I was skeptical of the title, “New Hope for a Cure for Type 1 Diabetes Cure” for many reasons. After living with this disease for almost a quarter of a century, I have learned to become a skeptic when it comes to promises of a cure. I would love to believe that there is a cure in my lifetime, but I’ve been let down before. I remember sitting on the bed in the children’s ward of the hospital after I’d been diagnosed and my doctor told me I would see a cure sometime in the next ten years. He may not have realized how tightly I held on to that promise, but I did. And those ten years have come and gone.

I remember the first thing I asked my doctor was, “Does this mean I can’t play sports?” I was fourteen-years-old and wanted to know how my life was going to change; would I be like Deenie, the girl who had scoliosis in the book by Judy Blume? I needed to recognize how I would be different from the others. I remember feeling almost excited, as if this disease that didn’t seem too bad, and would make me special, the girl who couldn’t play sports. I wanted to know if I would I be like my friend Laura who had pins in her hip from a drunk driving accident where she’d been thrown from the back of a station wagon through the front windshield of her friend’s car. Laura wore the field hockey uniform but sat on the bench, she helped with the equipment and water barrels. Would I be someone who sat on the bench? How would anyone know that I was different? How would I know my own differences?

“No,” My doctor said. “It means you have to watch what you eat, give yourself insulin and exercise every day to control your blood sugars. It won’t keep you from doing anything your friends can do.” Over twenty-four years, I’ve learned that my doctor was right and wrong. Diabetes has kept me from doing some things my friends could do, and diabetes has inspired me to do things I probably wouldn’t have otherwise.

So in this column, I will share honest and valuable information about managing this disease. I will not be negative or unrealistic. I will share my story with you about navigating my way through the beginning stages of this disease with the perspective of someone with experience because too often, when you are first diagnosed, the people you talk to who tell you how to manage your disease are not diabetics themselves. As a newcomer, you want to talk to people who are like you, who have been there and speak from experience. That’s why Diabetes Sisters is so important.

In this column, I’ll discuss how my attitude towards diabetes has changed over the last 25 years of living with the disease. In this column, I will share my feelings and work to dispel myths, stereotypes, and misunderstanding about diabetes to those newly diagnosed women.

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