About Me - Amy Gonsalves
Both my emotional and physical struggles with diabetes over the past two decades have made me who I am. I have moments of frustration with my blood glucose levels, rare moments of sadness and anger when I feel different than those without diabetes, and many many more moments when I live my life and enjoy it to the fullest.
My goal is for you, your child, and your family to feel the same as you live your life with diabetes outside a doctor’s office.
“Amy, you have a disease called diabetes. Have you ever heard of that?”
- Hiding numbers.
- Lying about meter readings.
- Eating packets of Equal on the sly.
- Breakfasting on Diet Pepsi and Reese’s Peanut Butter Cups from the high school vending machine.
Doing things on my own since, inconceivably, my pediatrician told my parents I should.
I was diagnosed with insulin dependent diabetes in 1988, weighing 56 pounds and standing 5 feet tall two months before my eleventh birthday. After four days in the hospital learning how to give myself a shot and watching an educational video about insulin, I went home with follow-up doctor appointments scheduled in the coming weeks and some balloons from friends and family.
Then came my life with diabetes outside the hospital and doctors’ offices. We had all talked about the way I needed to do things now, but what about birthday parties? And dance class? And holidays? What about my friends and people I didn’t know?
Diabetes is unlike most other diseases—you can’t simply take the medication your doctor prescribes every morning at the same time and go on about your day. Diabetes must live with you, breathe and move with you at all times. You must constantly evaluate your past, present, and future while making decisions: Do I need to check right now? What happened an hour ago? What am I going to eat? What effect is that food going to have over the next few hours? What am I planning to do in the next few hours? What am I putting in my mouth? How much insulin should I give myself?
- Diabetes is a double-edged sword: telling someone they have the power to keep their diabetes under control can often result in that person feeling like a failure when it doesn’t stay there.
After going on an insulin pump in 1995 during my freshman year of college, I enjoyed the perks that come with a pump after years of shots: sleeping in, staying up, and being flexible. The flexibility was great, but I still wasn’t dealing with my disease. I didn’t check my blood sugar very often and still had an HbA1c ranging between 10%-13% eight years after my diagnosis. I knew I wasn’t doing a very good job at dealing with my disease but wasn’t sure where to turn.
It wasn’t until 1998 when I feel I changed my life with an honest talk with myself and a simple decision. I had just left college (my third attempt in as many years—always looking for a place I belonged) and I knew now was the time for me to deal with my diabetes—and make my life better as a result.
I applied to work at Bearskin Meadow Camp as the Arts and Crafts counselor and began that summer after I turned 21. What an amazing experience—diabetes in the open, in the dirt, fresh air, diabetes jokes and songs; diabetes as a part of life in an unemotional and incredibly freeing way.
- Sometimes it is as simple and elemental as making a change from calling it a “test” to calling it a “check”.
At camp, I met and fell in love with the Camp Cook. We spent years going to great dinners, dates of all kinds, eating and enjoying life. I had someone now sharing my life that does not have diabetes himself, but lives with it just as he lives with me—mindfully accepting my disease and understanding some of what I think about in terms of my activities. I can speak in diabetes shorthand without explanations. I am fortunate to know him as a person and am so lucky to share my life with him as my husband.
As a result of our many fun dates and fantastic meals, in 2001 I weighed an incredible 175 pounds. At 5’2” I knew I needed to lose the excess weight. I called a couple places for help and looked online. Of the different weight loss options I found, Weight Watchers was the first organization to accept me and my diabetes into their plan.
A year and a half later I had lost 45 pounds and gotten back into moving my body. We got married in 2002; running helped me deal with a lot of wedding stress and I rediscovered how much I enjoy the freeing monotony running provides. I didn’t run intelligently, however, and developed a stress fracture in my leg in 2003. I had to then find creative ways to keep myself a healthy weight.
- Workouts became a valuable tool for my physical and emotional well-being.
I kept up my workouts through law school and the bar exam. During my second year of law school I began leading morning bootcamp classes at a local park. Never a morning person, it’s amazing that I now wake up at 5am or earlier every day to lead two classes each morning before sunrise!
The year after I passed the bar exam, I had the opportunity to meet a teen recently diagnosed with insulin dependent diabetes. I saw how important it is to have friends and experienced people with diabetes serve as touchstones for you as you learn what living with diabetes is like and as you learn how to become as emotionally and physically healthy as possible. I realized how many awkward hours I spent in waiting rooms as a child, teen, and young adult.
Diabetes Outside grew out of those realizations; I know that I make the most of my life with diabetes when I am outside the doctor’s office and staying active.
I felt like I was on top of the world in 2012: I had completed my fifth marathon, was running several times a week with a running team, my A1c was where I wanted it (under 7.0% which always surprises me I truly can accomplish), and I was progressing through the various life chapters of work, play, and friendships. And then “Diabetes Outside” had to temporarily become “Diabetes Inside Every Doctor’s Office You Can Think Of”!!!
I learned I was pregnant in January 2013 and kept up my workouts, even running my sixth marathon midway through my first trimester. Pregnancy threw my diabetes into a whole new ball of wax. I was so fortunate to assemble an amazing diabetes team and relied heavily on the support they provided. I wore two Continuous Glucose Monitors for the majority of my pregnancy and saw my CDE every two weeks. On average, I checked my BG 17 times a day.
I was the only T1 patient my OB had; I had to educate myself, fight for what I knew was right for me and my baby, educate my doctor, and endure and rise above the scare tactics the medical professionals I saw used to “educate” me about a T1 pregnancy.
Being pregnant with T1 diabetes is one of the hardest things I’ve done. So much was at stake! Everything I ate and did was affecting someone else… my little baby didn’t deserve a T1 mom! But that is what he got. And he is amazing, so I figure he is okay after all.
Two months after he was born I was back to running. I’m certainly not yet back where I was a year ago, but that’s okay… I’ve been busy. My diabetes continues to be a constant companion. I credit my physical fitness, my fantastic support team, luck, and love to be at this point. I’m an official grown up now, and I need to be here and help my baby grow up, too.
Life throws everyone curveballs, but for those of us with diabetes it can feel like we are Little Leaguers facing a Major League pitcher—we don’t stand a chance. But I think we all do stand a chance, and an amazing one at that!
We need emotional strength and flexibility of legendary proportions. Asking for help is one of the ways we can each reach a point where we live well, are fit, and can really have fun. How can I help you reach your goals in your life?
