with Eden G-H (my younger sister, and T1D of 4 years and counting)
T1D is an autoimmune disease. The immune system in a patient’s body attacks the beta cells in the pancreas, the cells that create insulin. As such, someone with T1D can no longer produce insulin. The blood sugars in that person’s body are not regulated by this incredible hormone, and they must act as their own pancreas. Luckily, smart scientists exist, and they have figured out a way to produce all types of insulin using bacteria.”
— Type 1 Diabetes explained for a twelve year old (by Eden)
Almost four and a half years ago, this is the explanation I wanted, the explanation I needed. But that’s starting in the middle—so let’s jump backwards.
My sister Eden and I are writing this together— for the past 1,564 days, since her diagnoses, Eden has lived with Type 1 Diabetes (T1D). When she was diagnosed, 5 days before my 12th birthday, with the H1N1 scare in full blow, I was left at home with my grandmother as my sister and parents rushed to the doctors office, and, when the results came back, headed to the hospital for training. I had no idea what T1D was, and neither did Eden. At home, a quick Google search for “diabetes” revealed almost nothing. I wasn’t allowed in the hospital because of the outbreak of H1N1, and that I was still under 16. Twelve, which seconds ago had felt old (I had just been celebrating an early birthday party) was no longer good enough.
Even now, googling “Type 1 Diabetes” results in a Google sidebar, which tells me “Type 1 diabetes is a lifelong (chronic) disease in which there are high levels of sugar (glucose) in the blood.” Useless, especially for a twelve year old. Also, and I think Eden will agree with me, doesn’t really give you any understanding of what T1D is. It also isn’t particularly accurate. Yes, T1D’s can have a high level of glucose in the blood. In fact, this is almost always what leads to diagnosis. Eden herself was 554 mg/dL (a high blood sugar) when diagnosed, a number that, at the time, meant almost nothing to us, but has since gained meaning. But that isn’t what T1D is. So, for a minute, we’re going to attempt to give you a definition, and also a look at what it means to live with Type 1, by going through an “average” day. The definition above encompasses what we felt should be available for any child to see when they googled the term. Even a more “scientific sounding” definition could replace the one Google currently sports, a definition it took from the National Library of Medicine. While the National Library of Medicines article goes on to explain T1D in depth, and offers an informative and accurate description, it is only the first line that makes it onto google’s front page.
But beyond just our definition, Eden wants to share what she does everyday, the work she does to play the part of her own pancreas. So, here she goes.
Eden, on a typical day and things to know:
In a typical day, I test my blood sugar 7-10 times, change my insertion site (for my insulin pump) every three days, count carbs for everything I eat, bolus four or five times a day, correct my blood sugar (by eating sugar or giving myself insulin).
- Prick test – testing my blood sugar using a blood glucose meter
- “High Blood Sugar” – when my blood sugar is higher than it should be
- “Low Blood Sugar” – when my blood sugar is lower than it should be
- Bolus – giving any insulin that is not basal insulin
- Basal – the baseline insulin I get every hour, dripped through the insertion set and pump
- Carb-Counting – counting the carbohydrates in a meal
- Pump – my insulin pump, which feeds me insulin through a tube
- Insertion site – the part of the pump which is connected to my body
- Meter – my blood glucose meter, which measures the amount of glucose in every deciliter of blood
A Day in the Life
9:32 am: I got up, and got ready for a horse show. I ate pancakes, orange juice and strawberry lemonade for breakfast. I tested and my number was 204 (which is a little bit “High”, above the “in-range” area of 70-180) and I bolused 7.4 units for the breakfast and too try to bring my number back in range. A practiced carb counter, I can now take a look at food and make an educated guess as to how many carbs there are in it.
10:38 am: I tested again, about 2 hours after the last time I gave myself insulin- that’s fairly typical, because it is the next time I’m allowed to give myself a correction, or else there will be too much going on, and the number won’t accurately reflect what’s going on. I was 92, which is leaning towards low. Because I was about to ride, I ate a muffin.
11:00 am: I tested before getting on my horse. I was 78, which is in the lower range. Riding at this number is not a good idea – if I went too low, I could pass out. In order to correct this, I had 15 grams of Skittles and a granola bar. When I tested again 15 minutes later, I was 86, and had to eat another granola bar before eating the arena.
12:35 pm: When I finished with my ride, I tested my blood sugar again. 136, in range. I was in range, but a little hungry, and had another muffin. I bolused 5.3 units of insulin for the 30 grams of carbs in the muffin.
1:09 pm: Testing before lunch is always a good idea. In this case, my blood sugar was 169, on the high end of in range but in range nonetheless. I had grapes, cookies, and a salad for lunch and bolused 5.3 units for the first two items – in retrospect a little much. As I had just given myself 5.3 units before this, I now had insulin stacked, which would come into effect one after the other.
3:05 pm: Two hours later, I was low, at 54. This is not critical, but it was obvious to me that I had given myself too much insulin for lunch, and so I corrected the low with strawberry lemonade.
4:17 pm: When I tested again at 4:17, I was 116, in range. This number is an example of what a blood sugar of someone without T1D would look like.
5:18 pm: An hour later, I went low again, dropping to 63. My mistake before was that I had taken fast-acting carbs, but none that would stabilize my blood sugar over a longer period of time. I corrected with orange juice and a granola bar, and fifteen minutes later, I was 101.
6:31 pm: Before dinner, I was 184. I had pasta with marinara sauce and challah bread for dinner – 6.7 units of insulin for 32 grams of carbohydrates.
10:20 pm: Testing before bed let me know that my blood sugar was 181. We try to aim for 160 before going to sleep, but 181 was still in range and let me know that I had taken the right amount of insulin for dinner. If you are in the same range in two hours and have not made a correction, you’re good to go!
This, on average, is about a normal day, with little going wrong. Even so, I’ve had days with pump failures, blood sugars that wouldn’t come up or down, and times when I’ve ripped my insertion site multiple times.