What Do You Do When Everything Goes Wrong?
By Amber Clour
Amber Clour has been living with diabetes for almost forty years, and she is no stranger to the many curveballs diabetes can throw your way. She shares how she navigates the unexpected and what resources she draws on – and what people she leans on – when everything seems to go wrong.
Living with type 1 diabetes for decades has given me plenty of unusual “think on your feet” scenarios, whether it’s having my blood sugar plummet while strolling the aisles of Target, having my continuous glucose monitor (CGM) fall off while on a weekend getaway, or my alarms going off during a business presentation. My mid-40s philosophy is to take things in stride and adapt when my diabetes becomes a challenge.
When things take a turn for the worst, you need to get creative and take action. Thankfully, the diabetes online community is strong, and it’s the go-to place for input. People living with this condition aren’t shy, and many have given me valuable tips and tricks to tackle almost any situation. And let’s be honest, the medical community isn’t going to have a “how to” guide for each diabetes roadblock.
A few years back I was visiting friends in San Antonio, Texas, and my schedule was jam packed. One morning we set off on a long bike ride, but throughout the ride, I kept watching my blood glucose climb, which was the opposite of what I was expecting. We returned home, and I went to give myself a few units of insulin and realized my backup pen was empty. Upon further inspection, I saw it was cracked and I hadn’t noticed while throwing it in my suitcase.
I started to panic. But then I took a deep breath, rallied and put a plan of action into place.
The plan was:
Post on Facebook: Did anyone in the area have an extra vial I could “borrow?”
Contact Novo Nordisk’s helpline.
Contact my general practitioner about calling in a new prescription.
Contact CVS about purchasing syringes to pull the last bit of insulin out of the pen.
Don’t eat any carbs and consume plenty of water.
As time passed, a CVS pharmacist, my general practitioner, and someone on the Novo team communicated with me while the diabetes online community blew up my phone. People living with type 1 and parents of type 1 kiddos were willing to drive hours to bring me insulin. I couldn’t believe the generosity of these kind souls.
I was lucky that day to be able to secure insulin from the pharmacy within five or six hours, but I stayed in communication with the people close by who reached out to me, just in case the process dragged on.
When the baby is too small for the pump
The online community does a fabulous job sharing tips and tricks, many of which can be kind of funny. I came across this Instagram post and reached out to the parents to get more details on their quirky solution to keeping their daughter’s insulin pump on.
Kayla Moses of Fayetteville, North Carolina, posted this photo of her infant daughter Scarlett, who at 9 months old and just 14 pounds, was too tiny to wear her pump. I can’t imagine having to solve this problem, but she and her husband knew there had to be a solution.
Moses shared on her Instagram post: “The doctors/medical suppliers didn't have many ideas for Scarlett's pump because of how small she is.”
Moses told me how she fixed the problem: “We tried the pump clip that came with her pump, but it didn't work well for Scarlett. My husband, Donovan, went to Walmart to find a solution. He quickly realized a belt/backpack would not work for her size. His next idea was using a dog collar around her waist to hold the pump clip. We have been using it for three months, and it has worked better than anything else. She is crawling, climbing, trying to walk, so sometimes it falls off and we must reattach it. Other than that, it has worked well.”
Life lessons from the field
These parents are not alone and, like many, are solving diabetes dilemmas every day.
Even though social media is great for connecting, sometimes you just need to talk with a friend who “gets it.”I have a handful of people I reach out to whenever a diabetes debacle arises. My dear friend, a fellow friend with type 1 and a guest on the “Real Life Diabetes Podcast,” Kelly McKeever, is top of the list and thankfully still takes my call. You can listen to his two podcast episodes here and here.
McKeever not only lives with type 1 but is also a camp counselor, RN, and CDCES. He has dealt with plenty of scenarios and shared a few stories and pieces of advice.
Scenario #1: CGM falling off
“If you are still getting solid readings, anything that can help secure it will work,” says McKeever. “I know someone who just placed Band-Aid after Band-Aid on to keep their sensor on. Anything offering light compression, just enough to keep it in place, should work, but if you have no backup or way to keep it on, it’s old school time.”
“I know you don’t like that answer and neither do I, but this is why we preach that you absolutely have to know the basics of diabetes management. I also want to mention from personal experience that surgical tape, painters tape and saran wrap have worked…”
Scenario #2: Alarm about to sound during an important event
“It really depends on the event,” he says. “If it’s your daughter's recital, you might get some sour looks, but if it’s a work meeting, people tend to be more understanding than we give them credit for. It’s awkward, but honestly if you know it’s coming, take control and let everyone know it will alarm and that you are fine to continue until the event/meeting is over. You can also excuse yourself and ask for a quick break to deal with it. There is no harm in asking.”
Scenario #3: Power outage
“Luckily, power going out overnight wouldn’t cause your insulin to go bad instantly, but to be cautious, let’s assume it was unsafe,” says McKeever. “It’s important to have a network of people with diabetes. Not everyone has the same access, and certainly people in small towns would struggle with this more than others.”
“I have been a part of the diabetes community for almost 20 years, and I’ve never seen a group of people more willing to share some of the most expensive stuff on the planet, from insulin to pump supplies to sensors. We get it. Sometimes things happen and you are the one in need, other times you are the one that can provide for others. So many people are willing to make a sacrifice to help someone in need.”
Should you not have that circle of diabetes friends, here are a few things to consider in a power outage:
Keep the refrigerator door closed.
Pull out a cooler and put a few ice packs in it. Please note, you don’t want your insulin to freeze so be cautious.
Call a close friend or family member to see if they could make room in their fridge until power is restored.
To learn more, read, “Be Prepared: Surviving Natural Disasters with Diabetes.”
As one of my past podcast guests said, “Diabetes doesn’t always feel manageable, it is survivable.” There are days when this message really resonates with me, but I try to remember this is just one very small part of my journey.
A few things you should consider when everything goes wrong:
Stay calm. This can be difficult, but freaking out isn’t going to help and will most likely spike your blood sugar.
Ask for help. The online community is incredible, and while patient helplines may take time, they are worth contacting.
Contact your healthcare team and/or endocrinologist’s office and keep them informed.
I don’t believe in the cliche “misery loves company,” but hearing other people’s stories about how they overcame diabetes-related issues is a reminder that I’m not on this journey alone. Whether we connect on social media or bond with our medical team – finding your people is crucial to living your best life with this disease.