In general, I’m not shy about my own diabetes or the Bear’s. We test bgs publicly, don’t try to hide pumps or CGMs, and try to educate when questions arise. In the DOC, there are always conversations abouat kinds of questions or topics are the most irritating, but I don’t really mind most of them. We get asked all the time if the Bear can eat something that other kids are eating, and it’s a chance to say that a healthy diet for a kid with diabetes is the same as a healthy diet for any kid (though I do love the poison cookies spiel). I hope that I’m modeling for her that we can share information about what it’s like to live with diabetes without feeling judged or getting upset.
I’ve been thinking about the one question type that I don’t seem to be able to take in stride: Is she/are you well-controlled? At least with the pump everything is being taken care of automatically. Is everything pretty stable at this point? (How is her diabetes? Is it better?)
Why does this line of questions bug me so much? I think it is because it strikes to the heart of the two things that I find most stressful about T1 Diabetes: unpredictability and relentlessness. There is no easy answer to how things are going diabetes-wise. How do you explain that things can go from perfect (oh look, the meter says 104) to sh*tstorm in a matter of seconds. Or that every choice brings with it the potential to create a bad situation — even if you’ve made that same choice 100 times before.
I want people to know that the Bear is amazing — that she can do anything she wants to and takes her diabetes in stride. But I also want people to know that trying to maintain balanced blood sugars is really, really hard and it isn’t ever going to get easier. Yes, I am grateful for all the technologies that have made things easier (or at least more accurate) than the days of boiling needles and testing bgs with urine — but the technologies also give us more to think about, more choices to make, and sometimes make it easier to do things wrong as well. I don’t want people to feel sorry for me or worry about me juggling my diabetes and hers, but I get very prickly when I feel like someone thinks it is “easy” or that I am making a big deal out of something that isn’t very important.
Yesterday I took the Bear and a friend out to lunch. The kids were great and we had a really nice time. The restaurant was super busy and when I went to pre-bolus myself for lunch, I had second thoughts, feeling like our food might take longer than usual to be served. I decided to wait until the food actually hit the table. It did take quite a while to get our food and when it arrived there was a mixup with what the Bear’s friend had ordered and then there was a spill, and there was a little bit of chaos before we could really start eating. In all of that, my brain remembered my intention to pre-bolus as if I had actually done it and I never took any insulin for my meal — which was not low-carb by any means. Feeling lousy at the bowling alley after lunch (and being without my own CGM since the transmitter battery died about a week and a half ago and it taking forever to get the replacement), I tested my bg and was shocked to see 389 on the meter. I was still thinking that I had bolused for lunch but must have completely botched my carb counting. I corrected. Then, kind of freaking out, feeling both agitated and wrung out, and jumping to the conclusion that this was going to be one of those extended, stubborn high bgs, I gave myself 2 more units and set a temp basal of 195% for 3 hours. Rage bolus much? When we got home it finally occurred to me that maybe I hadn’t ever bolused and when I checked the records on the pump, sure enough – there was a bg test before lunch but no insulin delivery. By this time about 2.5 hours had passed and my bg was down to 92 — great, right? I cancelled the last 30 minutes of temp basal. About 30 minutes later I suddenly felt woozy — another test (d*mn, I miss my CGM!) and the meter said 36. Next hour or so was spent drinking juice, eating graham crackers with PB, testing and more testing, and crossing fingers that I wouldn’t overdo it and end up high again. Fun times.
So, how am I doing with my diabetes? The Bear spent most of the afternoon over 200 but was gloriously around 140 all night. How is she doing with her diabetes? Are things settled? Good thing our insulin pumps take care of everything. We spent a lot of time trying to get her nervous after-school program leaders to feel more comfortable with the Bear needing to test and helping her figure out carbs for whatever snack they were making and I found out later that she just says she doesn’t want snack. Since she is always hungry after school, I can only conclude that the Bear doesn’t want to deal with diabetes stuff at this activity that she otherwise loves. The leaders are obviously relieved. They are wonderful, caring people who offer an amazing experience for kids. Still, it bugs me. On our way home from being out the other night, I was saying to the BHE how much I appreciate this particular babysitter – no drama, never any problems, doesn’t get stressed out about food, carbs, etc. After we are home & babysitter has left I hunt everywhere for the Bear’s CGM receiver. Finally, with a flashlight, I find it under a pile of stuff in her bed. It reads 58, arrow down, needs calibration. WTF? Treat the low, make the calibration, then look back at bg records — test at bedtime was 80. So, what were the arrows on the CGM at 80? And our instructions say that if she is under 100 and arrows are stable or dropping at bedtime, she needs some carbs. At the very least, you need to keep an eye on that CGM to see what’s happening. So, did I undersell the potential danger to this babysitter while trying to keep her from being too nervous or protective?? Or, have things been relatively stable when she has been at our house and she’s gotten a little complacent? Or just forgot this one time to keep an eye on the CGM?
So, are things stable “at this point?” No. And they never will be. But that doesn’t make it a bad life and it doesn’t mean we are doing it wrong. It just means that when you ask that question, I feel judged (whether by you or myself) and overwhelmed that there is no possible way for me to explain the contradictory things that happen when someone is living with T1, or the constant thinking that it takes even to manage instability that we can live with.