Living with Type 1 Diabetes: Our New Normal

November 15, 2014 Providence Health Team

In part 2 of our post about diabetes, Angela (Providence employee and Type 1 Diabetes mom), talks about leaving the hospital after Evan’s diagnosis and how he’s doing almost two years later. Read part 1.

On Our Own

After those three days at Children’s, we were on our own. It felt a lot like bringing home our first baby: we felt somewhat ill-equipped to do what was required of us. My mind spins when I think of those first days. We had a child with a chronic, lifelong disease … but we also still had lives and jobs and had to move forward with our “new normal.”

The medical staff assured us the idiosyncrasies of the disease would become second nature to Evan and to us. They were right. It’s been almost two years since Evan was diagnosed. He’s amazed us – since day one – with his strength, courage and understanding in dealing with Type 1 Diabetes. Early on, he was able to do the math in his head and figure his insulin dose – sometimes before we’d even totaled up the carbs he was about to eat.

World Diabetes DayNow he has an insulin pump and continuous glucose monitor (CGM) he wears 24 hours a day (unless he’s swimming or bathing). Together, these devices act more like an artificial pancreas than any other technology available.

The CGM tells the insulin pump what Evan’s blood sugar was 15 minutes ago and predicts blood sugar highs and lows. When Evan eats, he enters the number of carbs he’s about to consume into the smartphone-sized pump and it doses and delivers insulin. A small tube (called an “infusion set”) connects the pump to Evan’s body. We change the infusion set every three days. He still has a few finger pokes each day (to test blood sugar and calibrate the CGM), but no more injections. That makes us all happy.

A Day in the Life

 A few key items, daily milestones and long-term priorities for a person living with Type 1 Diabetes:

The “kit”: We don’t leave home without it! Evan’s kit contains a blood sugar meter, test strips, hand sanitizer, finger pokers, glucose tablets and glucose gel (to counteract lows), carb-counting book and log for tracking carbs, blood sugar and insulin. He has extra supplies in the health room at school, too.

Blood sugar checks: Even though Evan has a continuous glucose monitor (CGM), he still checks his blood sugar several times a day to make sure his CGM is calibrated properly. Each check involves a finger poke, a test strip and his blood glucose meter.

Snacks: High-protein/low carb items like string cheese and beef jerky are considered “free” (as in we don’t have to cover their carbs with insulin).

Exercise: Helps bring down a high blood sugar count. It can also affect a normal blood sugar count. During half-time of Evan’s soccer games, we often do a quick blood sugar check to make sure he’s in his normal range.

Awareness: Nearly everyone involved in Evan’s daily life – teachers, coaches, friends – has to be aware he has Type 1 Diabetes. And, he has to be constantly aware. He can’t mindlessly pop a piece of candy in his mouth. If a classmate brings birthday treats to school or if Evan goes to a friend’s house, he has to be mindful of the food he’s consuming and give himself insulin as needed. He needs to pay attention to how he feels and try to recognize a dangerous blood sugar low or high.

Education: We read about diabetes constantly. We learn about new studies and new technology. We attend educational events. We network with other families.

Support: We are lucky to have the support of extended family. We know a number of single parents or wives whose husbands are deployed who are on their diabetes journey alone. We are so thankful for all the help we get from family and friends.

Advocacy: We take part in fundraising events, networking events and more. Like Evan, we hope for a cure for diabetes in his lifetime. We want to look back and say: “Remember when Evan had diabetes?”

Diabetes Doesn’t Define Evan

He (and we) haven’t let diabetes define him. It is what it is: part of Evan’s life. We continue to move forward with new diabetes education and technology, plus deciding what to wear to school, doing homework, playing soccer and Minecraft – all the same things your 9-year-old juggles.

But, Evan’s long-range priorities have changed. He wants to cure diabetes. And, given the enthusiasm and determination he shows in keeping himself healthy, interacting with his endocrinology team and teaching other people about Type 1 Diabetes, we have no doubt he can and will change the world. He’s our little hero, for sure.

For More Information

To learn more about Type 1 Diabetes, talk to your Providence Medical Group primary care provider, visit the Providence online health library or visit the Juvenile Diabetes Research Foundation or American Diabetes Association website.

If you’re a Providence Medical Group patient who’s been diagnosed with diabetes, you have an expert resource in Nancy Churchill Lowell, our Certified Diabetes Educator. Nancy is a registered dietitian and works with patients at Providence Medical Group clinics throughout the county. Her services are referral based, so be sure to talk to your primary care provider or endocrinologist if you think you could benefit from her expertise. And, read her blog post about how diabetes care and treatment has changed since her grandmother was diagnosed in the 1940s.

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