Here's Why I'm Eager but Cautious About Trying New Diabetes Technology
By Diane Scherer
diaTribe’s own Diane Scherer shares why she is both eager and hesitant as she navigates various diabetes devices over the years and offers tips for trying new technology.
As a person living with type 1 diabetes, I often feel like my medical technology is one of my best friends. As with any friend, it takes effort and time to build trust and emotional resilience. The difference, of course, is that this friend is attached to my body.
We live in a world where we’re constantly hearing about the newest iPhone, Fitbit, or other digital gadget that promises to help us live better, more efficient, and productive lives. Like everyone, I am tempted by all the latest breakthrough technologies, but living with type 1 diabetes for 38 years has taught me how to balance that excitement with a healthy dose of trepidation. While fear can be paralyzing to anyone with a chronic condition, I try to think of what it has taught me — to learn how to have a strong and resilient character when things aren't so easy and not to stay with the status quo.
I try not to let my nerves and my past disappointments dampen my desire to try new diabetes technologies. To do this, I remember what I have used over the years to weather the ups and downs of chasing the latest and shiniest products that always promise a health breakthrough.
Many experts rightly consider the last few years to be an age of great advancements in diabetes care. I am continually grateful to the medical and engineering leaders in the diabetes space who work to make my life better. But it can get overwhelming, and it is OK to feel this way! It’s OK to not want to start a new program or device while at the same time feeling tempted to rush forward; this is where my current emotional state is.
For the past few months, I have been staring into my bathroom closet where my shiny new Omnipod 5 automated insulin delivery (AID) system was waiting for me. Unlike the sensation of leaving the Apple store and rushing to turn on that newest iPhone, it takes a lot of mental energy and courage to start a new medical device. This is something that will be attached to my body, and it has the potential to make me feel great — or awful — for the next few weeks while I tweak the settings.
I’ve experienced this hesitancy before; however, this time feels different. Harder. I have been trying to understand why I feel this way.
The early days: Elation mixed with stress and stigma
I started on my first insulin pump — the Animas — 17 years ago. It was the first time I had something attached to me 24/7. I was so excited that I could have a different basal rate for those pesky early morning dawn-phenomenon hours (when blood glucose can rise). A pump often helps because you can set an increased basal rate leading up to those hours. I knew that this cumbersome device — larger than today’s pumps and the first time I wore one — would help me manage my diabetes, yet it also caused me immense stress as I tried to use it properly.
Three things stick out in my memory:
Faxing my diabetes educator every two days with 24 hours of settings and blood glucose meter (BGM) readings to fine tune the settings and the amount of time that took away from my job;
Wondering where I should wear my pump, especially because I just got engaged and was worried about how to wear it under a wedding dress; and
My first encounter with stigma related to wearing a pump. At the beach, someone thought my pump that was hanging from my jean shorts was a beeper and asked if I was a drug dealer. While this was upsetting at the time, it taught me how to answer such questions in a straight-forward and confident manner. “Yes, right, I’m a drug dealer,” I might have joked, and then would have said, “If you want the real answer, I have had type 1 diabetes since I was 3, and I am wearing an insulin pump to keep me alive.”
I started my first Dexcom continuous glucose monitor (CGM) a dozen years ago. I was elated to try it; no hesitation at all. I hoped to become pregnant, and the Dexcom gave me a back-up (back then, a CGM was only approved to replace a BGM) and in-between readings and night-time sleeping trends, in addition to the BGM finger-sticks I was doing. Also, as it was my first CGM, the experience was novel.
Perhaps most importantly, trying a new CGM (at least 12 years ago) didn't affect my dosing, so my physical well-being wasn't at stake, as compared to if the CGM was connected to an automated insulin delivery system. I slapped it on, my new best friend, right away and was hoping for clear benefits of getting glucose values every 5 minutes that would yield positive results in my own real-time insulin, food and other decisions. It was then that I knew I wanted to be a person living with diabetes who was not afraid to try the next new thing on the market. I thought, at the time, bring it on!
About 10 years ago came my trial with the Omnipod. Again, it was a thrilling moment for me to try a non-tubed pump because, as a new parent, I was constantly moving; my 1-year-old daughter’s squirming legs and arms would sometimes rip off my infusion set. Until I was a mom, I never thought about how kids could affect pump-wearing.
While I was looking forward to wearing this un-tubed pump, it also meant I had to watch out for different insulin sensitivity for different places on my body. So, here I was tweaking settings again and not feeling great on some days.
The arrival of “space-age” diabetes tech: AID and DIY Looping
Then, when the Medtronic 670G launched in Spring 2017, I couldn't wait to get on the waitlist. Because it was the first automated insulin delivery (AID) system, my endocrinologist (and perhaps most others) required in-person training, so there was a waitlist to complete it. I thought, “Wow, a CGM that could link up with my pump and automatically give various dosing!” I felt like I was living in the time of the Jetsons.
For example, if my blood glucose changed during sleeping hours, the Medtronic CGM would pick that up and automatically re-calculate my basal-rate dosing; and the same with exercising. While AID is now widely accepted, five years ago, it felt like space-age diabetes health care had arrived.
There were still stress points, including insurance coverage and the time required to get special pilot training sessions from Medtronic. Nonetheless, I remained enthusiastic about trying it. In the training sessions, I found it comforting to be in the same room with others who were being trained on the same new insulin pump and CGM. It took a few weeks, and I was so grateful (especially during sleeping hours) to have more time in range and flatter CGM lines.
The harder part of this new technology was the amount of beeping and alarms, and then having it kick me out of the AI delivery mode (670G auto-mode). I became annoyed with the pump. It would beep during the night and during work meetings, and I sometimes wanted to give it up. And just as I got the hang of it, another life transition emerged: I became pregnant again. The 670G auto-mode wasn't approved for pregnancy, so it was back to the Omnipod, with no AID.
After delivering my son, I started following the DIY (do-it-yourself) Looping community. “Wow,” I thought, “I’ve entered The Jetsons part 2!” I was ready to dive into another technology learning adventure.
Granted, now I had three children to balance, a full-time job, and other community involvements, but something kept pulling me toward taking the immense time to learn about Looping. I have always considered myself proactive with my diabetes management, so I started reading articles about DIY Looping (now often called open-source AID).
For example, the Facebook group “Looped” is an international community of 30,000 followers. When I started reading their documents and comments, I thought this was a group of some of the smartest and most diabetes-savvy people anywhere; so, I trusted the algorithm builders. The Loop algorithm is very transparent and a user can change all the target settings, whereas in my previous experience with AID, the target glucose was set by the manufacturer and could not be lowered.
After 10 hours of reading the Looping document and sifting through comments on the Facebook Looped community, I told myself, “Diane, just do it. Buy the Riley Link (an antenna that enables the Dexcom G6 to ‘talk’ with the Omnipod, see image), and once you buy it and put money toward it, you will feel compelled to go through with setting up the looping system.”
Looping also required purchasing a Mac and an Apple Development Account. I am grateful for both, but it's a reminder that diabetes is expensive. It took another 15 or so hours to build the Loop App, and then weeks of tweaking my settings so that the algorithm suited my needs.
At this point in my diabetes journey, I realized how very important a globally connected community is for sharing tips and tricks, as well as frustrations. On the flip-side, the over-consumption of social media is also difficult. I try to seek out information on these groups but also not compare my own management or time in range with others, as it can become all-encompassing.
Preparing to take the next step
I am now two years into Looping with my Riley Link, Dexcom G6, and Omnipod. I truly get amazing sleep, and my time in range has been very good. Looping also enabled me to run my second half-marathon in February 2022, and I raised funds for camp scholarships for Florida Diabetes Camp.
Looping has been life-changing, but maintaining a mental balance is one of the greatest challenges in that I have to have my iPhone within 5 feet of me at all times for looping to work. It may not seem a big deal to most people, but I am also trying to model to my children that we don't have to be attached to phones and screens all the time, so I have to explain this dichotomy to them that “Mommy needs it for her medicine.” I am constantly juggling four pieces of technology that are either in my purse or attached to me, and making sure that they are all working properly and charged (Iphone, CGM, Omnipod, and Riley Link).
What I have learned throughout my years is that nothing is constant; just when you get used to a technology, something else comes up and you have to be flexible enough to pivot.
As I write this article, my iPhone is telling me that I have 0.5 GB of space left, and this could drastically affect Loop’s ability to perform. Now I have to consider the idea of buying an iPhone with more space and a newer Mac with more space to build the newest Loop — or to open my bathroom closet door and try my new Omnipod 5, which really seems to have many benefits.
Why am I hesitant to try Omnipod 5? Looping is working very well; why fix what isn't broken? Yet, there are aspects of the Omnipod 5 that could be better for me. I am busier now with a career and three kids. At the time that the Omnipod 5 box came, I was planning to travel internationally, and my children had just started school. I have been afraid to try the new technology, and frankly, I just don't have time to read the user's manual, tweak settings, and not feel physically well. Diabetes is a part of my life but not my life.
All that said, I will take it one step at a time, one day at a time. I am resolved to try the Omnipod 5, compare and contrast, and reflect within the first few weeks. People are saying that Omnipod 5 takes about 4-5 weeks for the algorithm to learn your body as your total daily insulin affects the algorithm, so I believe I am most nervous about not having a good time in range and not feeling my best physically. I have to remind myself I have been through this before and if I don't feel good for a few weeks, I will resolve to determine what pump regimen is best for me and change things.
My tips for trying new technology:
Find a support group (there are many!) or just one diabetes buddy (I actually have one that started Omnipod 5 four weeks ago). Ask your questions but balance that with not letting others' experiences influence your own. We are all very different with how we manage a complex disease. Don't compare yourself to others and try not to become obsessed with reading all social media comments.
When trying new technology, I try to keep everything else the same. I try to eat the same things during the first few days so that there is a baseline of comparison, without the influence of different carb counting and other factors. Of course, this is hard because there are 42+ factors that affect blood glucose levels and you can't control hormones, etc., but I do try to eat the same and have the same schedule.
Clear your calendar of activities that don’t have to be done. If I am trying a new technology, I try not to take on too much, and I try to clear my social calendar. Although I am open with some people about the unique challenges of living with diabetes, I am not open with everyone, and I often want to show that I live a normal life.
Take it one day at a time. If you are feeling frustrated, do a hobby you enjoy and take your mind off diabetes. Tomorrow could always be a better day. Be proud of how far you have come in learning and growing within your own diabetes journey.
With all the frustrations and difficulties, I am grateful for the opportunity to have these new technologies. It's truly amazing that we live in a day and age where people with diabetes have so many options to help them live their happiest and healthiest lives.