Last month, my family and I had the opportunity to attend the Children with Diabetes Friends for Life Conference in Orlando, FL. A conference originally geared toward children with type 1 diabetes and their parents, it has evolved into a meeting of over 3000 attendees including people with type 1 diabetes of all ages, parents, children, siblings, grandparents, and even friends. The nearly weeklong conference offered a variety of sessions, including a session on Women & Diabetes, presented by our Founder and CEO, Brandy Barnes, as well as insulin pump trials and focus groups from companies wanting to learn more about what patients are looking for in diabetes management. My family and I are grateful for the opportunity to attend, thanks to those who contribute generously to the Diabetes Scholars Foundation.
“Having support is as equally important as having information.” Dr. Richard Rubin 1943-2013
One of the greatest aspects of attending this conference was the sense of community I felt as soon as I entered the conference center. I ran into others in the diabetes world that I have met through my work with DiabetesSisters but have never actually met in person. As I walked down the long corridor toward registration, I hugged at least three different people that quickly embraced me and gave me a great sense of belonging. Yes, I was overwhelmed, but that feeling quickly turned into excitement when I realized how much I could learn in only a few days.
Over the last several years, I have been privileged to meet amazing people, all living and thriving with diabetes. These are many of the people I count on for support, education and encouragement in living a life with diabetes. While I arm myself with medical information, I have found that I am always better grounded when I have a support system. I have found this support through my husband, son, extended family and friends, and my DiabetesSisters. Now, I have added to that support system with friends I met at this conference that share the same successes and failures as I do in managing diabetes.
“The doctor is there to serve you. If they don’t, it’s time to seek other medical advice. YOU are your biggest advocate.” – Henry Anhalt, DO
For a long time following my diagnosis, my visits to specialists were not pleasant. The doctor would tell me what to do and then I would either do it or not do it. There was no dialogue. Over time, I learned that the only way to manage my diabetes was to take ownership of it. Today, I have conversations with all my doctors, especially my endocrinologist. We tackle diabetes head on and we make decisions about my care together. When something goes wrong with my insulin pump or my blood sugar is abnormally high, I search for reasons why this could be. I no longer wait three months until my next appointment and wait on the doctor to tell me how to change things. I’ve learned that by expecting a relationship like this with my doctor, I am a better patient. And as a better patient, I put my health and treatment ahead of anything.
“Even if you have diabetes, you can still be anything you want to be.” Patrick, age 5
My son has always known me to have diabetes and in the last two years, my husband and I have started to explain more and more to him, from understanding what diabetes is to knowing the signs of hypoglycemia. However, I was not prepared for this bold statement from him. When I dug a little deeper, I realized he had learned it from the childcare staff at CWDFFL where he spent two days with other children his age, some with diabetes and some without. Further, I was not prepared for his follow up question: What did you want to be, Mommy? With tears in my eyes, I replied, “Your mom.”
When I was diagnosed with type 1 diabetes, I was immediately told that I would never have children and that I should remove that thought from my mind and focus on other things. It wasn’t until many years later that I realized that I *could* have children, as long as I was focused on managing and controlling my diabetes. To date, having a complication-free pregnancy is my biggest diabetes accomplishment. I realize now that my ultimate goal is to lead a long, healthy and informed life with diabetes. Ultimately, though, I walked away from this time wanting to educate and advocate even more on not only my behalf, but on the behalf of others with diabetes. As patients and advocates, it’s our responsibility to ensure we can all be “anything we want to be.”