The Lilly Diabetes Journey Award program recognizes people at milestone years for diabetes management. Glu community managers Anna Floreen and Bill Woods received their bronze 25-year medals recently, and share their reflections on living with diabetes.
Twenty-five years is a long time. Okay, maybe not for some people who have lived decades longer, but for someone who has calluses on their fingers and red dots on their butt and stomach from thousands of infusion sets and finger pricks, I’d say it’s a long time. As a young thirty-something now, and whose friends are starting to have kids, I cannot fathom the thought of knowing a young child could develop a long-term chronic illness. I’m now realizing what my family, my mother especially, endured.
It isn’t normal to count food. I remember precisely 24 Goldfish crackers, 12 grapes, only a half of a Kudos chocolate bar (think 1993) as a special treat. The way we live our lives as people—paranoid about the dreaded complications—is nuts. “Carbohydrate ratio” is now sometimes the first or second phrase a child might learn if they are diagnosed as a toddler, and kids consume calories as medicine. When most children go to a friend’s house for dinner, they don’t have to ask, “Excuse me, but do you know how many grams of carbohydrate are in this meal?” As I’ve mentioned in other articles, the mental drain and pain from the attempt to reach our desired numbers is an entire full-time job in it of itself! I wish more people realized that. The physical stuff for me has been nothing compared to the guilt and aftereffects of a stupid decision like eating a peanut butter sandwich at 2:00 a.m. to treat a low. I can prick my finger in my sleep, change a pump site in less than 4 minutes (trust me, I’ve timed it), but I can’t take away the fear and frustration that has no end in sight.
As I built relationships throughout my college years, my friends often asked me that if there is a cure would I get it. I still struggle to answer that question. My decades of positive diabetes-related activities, such as attending camp, serving on committees, and now a career helping others with type 1, makes me think, why would I? I can’t just erase the strength and motivation my kindergarten diagnosis age onward has brought me to. What happened to the saying, “Everything happens for a reason?”
At the same time, however, there are days where I do want to give up. The other night my fiancé and I had tasting for our wedding reception. Zucchini bread, wines, heavy appetizers, and the best carrot cake I’ve ever tasted sent my sensor in a tizzy, but because insulin works so much slower than the icing on the carrot cake, I had to wait. I had to wait for the insulin to kick in, which it did, and then for it to come back down. The waiting is the hardest part. If in another 25 years there is something like a cure, will I get it? I still don’t know, but until then I’ll wait for it and be thankful and incredibly lucky for the wisdom and inspiration this so-called disease has brought to me thus far…
It’s been 26 years and counting since my diagnosis of type 1 diabetes at the age of eight. I count each year since then as a badge of honor. I have estimated that I have done more than 70,000 finger sticks, 65,000+ insulin injections, worn four different insulin pumps, and, sad but true, I can count the number of diabetic seizures due to severe hypoglycemia I have had on both of my hands. Not one hand, but two. I’m proud of the fact I have lived with a chronic illness and thrived in the best way I could. I competed athletically at the collegiate level and found that the world of diabetes could even be a career path for me. Being able to share my diabetes experiences with other families and people living with diabetes has brought me the most joy. It has given me purpose with a disease state where lows aren’t just defined by one’s blood sugar values.
All the years living with diabetes haven’t been shining moments of diabetic glory and target A1cs. I have lived more of a lifelong journey of contemplating who I really am with diabetes, and trying to live as someone who doesn’t have diabetes. How can I make diabetes have as little impact on my life as possible? I ask myself if it’s a flawed question. Flawed because the hard truth is that my diabetes impacts everything I do every single day. I just need the impact diabetes has to be a positive one.
Do you struggle with the confines of the daily schedule and self-discipline demands of type 1 diabetes?
It’s often easier to ignore your diabetes for hours, days, even months than live a well-managed diabetes life. I have years of experience doing just that. This has been the biggest challenge I have faced in my 26 years living with type 1 diabetes. I still continue to work hard on this balance, and it has given me life experiences I value and implement outside the world of diabetes every day.
Maybe this 25-year medal will be that additional reminder of motivation I need to exert just a little bit more effort each day for my diabetes health. I believe the next ten years are going to be exciting for those living with diabetes, and I have been waiting, like you, for each small improvement to managing diabetes that makes life a little bit easier. To forget you have diabetes is a nice relief, but to live with diabetes is an accomplishment.
To learn more about Lilly’s Diabetes Journey Award program and apply, please click here.