By nature, I have always been a very math and science minded individual. I like things to be black and white, literal translations, and the ability to be analytical and break things down into logical little buckets. I like things clean and neat.
That’s why when our Certified Diabetes Educator (CDE) gave us this little chart when our daughter was diagnosed with type 1 diabetes (T1D) that showed us how much insulin to give her based on what her blood glucose was and how many carbs she was eating, I thought, “I got this.”
I also had a corresponding Excel document I created where I would log every blood glucose check, carb she ate, insulin dose and make comments about why the results weren’t what we expected:
“Carb counting may have been off for last meal.”
“Played outside for 2 hours without having any carbs.”
“Was late giving Levemir dose.”
I wanted and needed for there to be an explanation for when my actions didn’t get the desired outcome.
I remember emailing the CDE once time when I was positive that my calculations had been correct, but her blood sugar didn’t do what I expected. Her response back was simply to tell me that sometimes I could do everything “right” and it just wouldn’t work – furthermore, that I could do the exact same thing under the exact same circumstances two days in a row and get different results.
She told me that managing diabetes was a balance between math and science … and art.
My heart sank.
I can’t do art. It’s practically a four-letter word.
I don’t understand the color wheel, I can’t blend things, I’m not good with things that are left open for interpretation. The fact that I had to bring an artistic touch into our diabetes management caused me to panic.
Once I stopped hyperventilating, I tried to continue with our math and science approach, but it continued to fail me. What I learned was that there were a lot of factors that worked against a math and science approach to diabetes management.
I’ve talked before about how diabetes impacted our eating habits, and in that shared that for a brief period of time, I thought about only eating things that came out of boxes simply because it made carb counting easier.
But the reality is this simple: nutrition labels are allowed to have a degree of variance and still be “accurate”. According to the FDA, the calories on a food label can have a variance of up to 20% in either direction and still be considered accurate. While we aren’t calorie counting, the calorie count is based off of the protein, fat, alcohol and carbohydrates contained within the food. So while the food label may indicate a certain amount of carbs is contained, it may be off every so slightly. It’s not going to be a huge amount, but it was just the appreciation that it’s also not necessarily exact.
I also learned not every carb is created equal. Her body needs more or less insulin depending on what she’s eating and we may decide to use her Omnipod to deliver the insulin all at once or over an extended period of time.
Also, carbs aren’t the only component of the food that impacts how much insulin she needs. A beef burger and a turkey burger have the same number of carbs because the carbs come from the bun – but the fat content of the food also impacts how much insulin she needs.
A Dexcom is a continuous glucose monitor that my daughter wears. It takes a reading of her glucose levels and transmits the data to the cloud so I can monitor it from an app on my phone.
For those of us who use them, we all know it and have probably experienced it: Dexcom is sometimes “off” compared to a finger stick. Again, there is a percentage that the sensor can be off by compared to the actual reading and it can still be considered accurate.
Personally, our experience is that it is on point more than it’s off and our experience has taught us when I need to be double checking with a finger stick. In the course of the last three years that we’ve been using Dexcom, I’ve probably pulled five sensors off and thrown them out because the accuracy was too far off and I couldn’t trust the data.
I figure we’ve used in the neighborhood of 150 Dexcom sensors in the course of those three years and I’ve thrown away five because I felt they were too inaccurate to use. But the other 145 or so have been pretty amazing.
Blood Glucose Meter
One of the “ah ha” moments I had when we were starting to integrate diabetes technology into our life was a time that I was double checking a Dexcom reading with a fingerstick and they didn’t match as closely as I would have liked.
I realized I trusted the glucometer as golden because that’s what they had taught us to do in the hospital.
But then I started to think about it a little more than that.
I remembered a time when we were in the hospital and she used her new glucometer for the first time. The nurse then double checked with the hospital glucometer. They were off by over 50 points from one another. The nurse kind of shrugged in the moment and said we were going to use the number from hers.
I also had experienced times when we would do back to back finger sticks and use the same glucometer and get numbers that were off from one another. Was it 150 or 225? Or 183?
Each of those numbers requires a different amount of insulin. I had come to trust the glucometer as gold because that’s the technology that they had provided for us in the hospital, but even the glucometer has a certain percentage that it can be off.
My little chart that showed me how much insulin to do based on blood sugar and carbs suddenly became a little bit open for interpretation. I transitioned my mind from carbing counting to carb guessing, and really began to look at the data on the Dexcom to make decisions based on the trends of about where I thought it was and where it seemed to be going.
I no longer held myself to feeling like I had to be so exact. I no longer always believed that the Dexcom number was the one that was “off”. I started taking some artistic license in how I approached management.
Numbers vs. Symptoms
I was talking with a friend whose child had recently been diagnosed child and the conversation turned to low blood sugars. She asked me what number made me worry.
By this point of time, I can tell you – numbers don’t cause me to panic.
I’ve already decided that the numbers are really subject to interpretation and I don’t look at any of them as being exact.
Which should cause me to worry more – a glucose reading of 75 where she’s sweating and shaking or a 55 where she is surprised to see she’s hypo because she doesn’t feel symptomatic at all?
We’ve had a couple of lows recently that worried me. In one instance, she said she was blacking out – she was able to drink two juice boxes to help treat it and eat a snack, but that’s a scary symptom. In another, she actually woke up in the middle of the night. That one was in the 50’s, a number that generally doesn’t cause me to worry, but it was the fact that it woke her up. She generally sleeps through finger sticks, juice boxes and sometimes bananas.
The math and science side of me says it doesn’t make sense that a 55 sometimes can be asymptomatic and other times she feels all of the symptoms.
My newly embraced dia-artist says if you only see the number, you miss the greater picture.
The reality is that with diabetes, if you can make the the numbers always add up, you probably would have been a good accountant for Enron in the late 1990’s.
I’ve learned to love my inner dia-artist, too. I find painting her Omnipods to be relaxing, whether I am by myself or with my girlfriends. I’m not too awful on that tiny canvas.