Diagnosed just before her junior year of college, Alex has embraced life with T1D to empower and inspire others. In addition to working as JDRF’s Development Coordinator the for Greater Chesapeake and Potomac Chapter, Alex ran for Team JDRF in the 2017 New York City Marathon. She shares her T1D experiences with a dose of humor on her awesome blog: Iced Coffee and Insulin. Here we (virtually) sit down with Alex to pick her brain about living with T1D, empowerment, and advocacy.
First things first, congratulations on a successful finish at the NYC Marathon! What was the process like finding a T1D routine that worked well for balancing blood sugars on a 26.2 mile run?
Thank you so much, Courtney! It was an incredible experience. I was able to really track how my blood sugars reacted to running through my training. Every time I left on a run, I would make sure that I knew how much food was in my body, how much insulin I had “on board,” and what my blood sugar was at the moment I left. Having a Dexcom CGM was so helpful because I was able to see when my blood sugar was going up or down. I was able to figure out (through trial and error), the best foods to eat before, what time to run, and how to prepare for a low during the marathon. I was able to figure out my bread and butter for race day.
My tips for someone who is about to start a race is that it is absolutely possible, but it requires figuring out how your body is going to react, and preparing yourself for anything that is thrown at you. Of course, T1D is sometimes unpredictable, but you can always prepare as best as you can.
As someone who is so involved in the T1D community, how would you suggest someone get involved for the first time?
I have to admit that I was not one to get involved with the T1D community when I was diagnosed. I really wanted to keep my diagnosis a secret from everyone. Eventually, I came to a point where I realized that I was feeling very isolated living with an invisible disease, and I needed support. For someone else, I recommend first reaching out to your local JDRF chapter and volunteering for a walk or a gala. Bring along a friend or a parent for support. That way, you can really get an up close and personal look into the incredible community of T1Ds. Additionally, use social media for support. There are TONS of Facebook and Instagram accounts of T1D’s are incredible role models. They are refreshingly honest, and have helped me find a virtual community, as well as a place where I can really vent about how frustrating T1D can be. You will be able to find people all over the world who are doing amazing things with diabetes.
I look at advocating and volunteering for JDRF as a way to use my diagnosis as a way to empower, inspire, and motivate others. I think of the parents who are struggling to cope with their newly diagnosed child, or the teenager who is trying to navigate transitioning to college with T1D, and I know that I can lend a helping hand. I challenge you to use your platform as a way to help and support others. You will be surprised at how your small dose of generosity and support can change someone’s life.
If you meet anyone (in history or presently) with T1D, who would it be and why?
I would definitely have to say Sonia Sotomayor. Sonia is the first Hispanic woman to be a Supreme Court Justice of the United States. The story of her diagnosis is incredibly inspiring, and she is now serving as such an amazing role model at a powerful position within our country. She is a true vision of an individual who is relentless, powerful, and independent. She has never let T1D get in the way of following her dreams. You have to check out her book, My Beloved World. She has a few chapters about living with T1D.
Funniest/craziest T1D story OR favorite T1D memory:
My favorite T1D memory is the JDRF One Walk in Washington, DC. This was the 3rd and final walk of our walk season in 2017. I had never felt a greater sense of community, love, and strength during those hours of celebration. I was able to converse and laugh with our amazing network of families and companies, and stand back and watch such a powerful community join together for just a few hours. The energy throughout the crowd was electric and inspiring. I saw families make connections with each other, kids compare pumps, and parents being able to meet others who are going through this same journey. I’ll never forget it!
What do you think is the hardest thing about living with T1D?
The hardest thing about living with T1D is the mental and emotional distress that it carries. I have days where I am doing everything right, and my blood sugars are still on a roller coaster. There is the anxiety about carrying all of my supplies everywhere I go, the stress of leaving something behind, the frustration when monitors break and stop working, and the constant battle with trying to get more medication and supplies. The highs are exhausting, and the lows are terrifying. The constant anxiety of wondering what my blood sugars are can really take a toll on me. The worst part is that I sometimes keep all of this anger, sadness, and frustration inside because most people cannot really understand how I am feeling. On the outside, I look completely fine. On the inside, I am usually extremely run down, overwhelmed, and frustrated. Most people shy away from talking about the depression and anxiety that type 1 diabetes can bring, but I truly believe in making those uncomfortable conversations comfortable. That was part of the reason that I started Iced Coffee and Insulin. I talk about things that are uncomfortable, and I strike up conversations about real issues. I have really dived into transitioning to college, drinking, burnout, and my mental struggles with T1D.
What advice would you give someone who is newly diagnosed?
You are not alone, you will be okay, and you can do this.
-You are not alone. Being diagnosed with diabetes is completely daunting and an emotional roller coaster of sadness, anger and confusion. Feeling isolated and alone is normal and expected. You do have to realize, however, that you are not alone. There is a support system here for you, whether it be through your family, friends, JDRF, or the online T1D community. Take the time to reach out and make those connections.
-You will be okay. As I discussed earlier, the mental and emotional burden of T1D gets to you. The emotions will come, and the negative feelings will be there. Accept them, but realize that you are stronger than you think. You are capable and able to take care of yourself. You will be okay. If you find yourself needing support, don’t be afraid to reach out to your doctor about how you can better cope with T1D.
-You can do this. There are T1D’s everywhere who are doing INCREDIBLE things. There are professional athletes, successful businessmen and women, entrepreneurs, famous musicians, award-winning actors, toddlers, kids, and adults who are living, and thriving with Type 1 Diabetes. Don’t let this diagnosis stop you from achieving everything and anything that you want to accomplish.
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