(Note to my readers: Sorry about the break. With the book coming out [Kindle next week; print mid June] and some other things, it’s been busy. But here I am, back again. Thanks for your patience).
My daughter has been doing remarkably well lately with her diabetes care. As she said to me the other day, waving her DexCom 7 in my face, “I’m a diabetes wizard!” I’m not sure what the deeper motivation is for her. She’s back on her insulin pump after a two and half year break, but I don’t think that’s it. If there is one thing I learned from her self-imposed “pumpcation” it’s this: it’s cool to have method choices but honestly, at the end of the day, they all work okay. (Big statement from this former Pump-crazy mom).
I do think part of it is going back on a CGM. She hated her CGM back in 2006 (anyone remember the first MM one? It was huge and ugly), and even the smaller MM had an insertion that can best be described as violent. But this new one; it’s rather snazzy. And for now, she seems to like it.
The biggest part of it, though, has to be maturity. The lifespan of diabetes care kind of goes like this: Little kid: excellent control because mom or dad or whichever adult is in charge rules. Little kids just want to please their parents and go along with most of it without a hitch. That’s why I was sooooo arrogant when she was young: I assumed because I was master of her diabetes, she was too. Teen years: Hell in a hand basket. Or working to fight ending up there. College age years: A shift toward just plain wanting to feel better. Right now: accepting and doing.
Strike that accepting thing. Because as we were driving along the other day (a cold, rainy day she had off from work; we treated ourselves to a little shopping, including a new blender to make healthy smoothies for breakfast each day), she was chatting about her CGM, her pretty much rock star blood glucose levels lately, and life in general. I was beaming with pride and thinking: gosh, maybe we’re okay with this. And then she said this:
“You know, mom. I kind of have a choice. I can bear this burden; be attached to all this stuff and pay attention to it all and deal with the constant hassle of it and in exchange feel good and live a long and full life. Or, I can ignore it and not have to deal with all that crap and have less work and less to think about all the time and, well, not feel good and maybe not live long. That’s my choice: burden or freedom.”
And it reminded me anew of two things. First: we are so lucky to have these amazing tools. There is no question if Lauren was born even 20 years prior her outcome in this life might be different. So I’m thankful. Second: It’s really, really hard to live a full and happy and fulfilling life with Type 1 diabetes on board – even with the tools.
And this is what scares me: the newbies coming into this world who start out with all these tools that allow us so much access to data and so many chances to intervene. Because the truth is, even with all these new tools, “controlling” Type 1 diabetes is still a wish at best. And in this parent’s view, total control of Type 1 often comes at the potential cost of a well-rounded life.
I was lucky, in some ways, that Lauren was diagnosed in the dark ages. Back then you had your Regular insulin, your NPH, your meter and your 4-6 checks a day on average. You had no way of knowing what was going on in between those checks, and for that reason, you learned to have a little trust; your child with T1D learned to feel lows and you learned to know that if one of those checks came in high or low you could fix it. You didn’t see the crazy bouncing that goes on in between, and since you did not know for sure it existed, it did not scare you, freak you out or, frankly, drive you mad.
Because I am pretty sure if I was new to all this and I saw constant blood sugars and had a method of giving insulin almost all the time I’d go way off the deep end in trying to “beat diabetes.” I’d fear highs and I’d freak out at meal spikes. I’d worry constantly and beat myself up for not keeping her blood sugars in great range.
So my daughter has the luxury of having grown up before these tools. That means when she looks at her CGM data, she does not react every time there are up or down arrows. She knows her body. She’s lived a decade and a half understanding that sometimes spikes just have to be left alone and sometimes trending toward low does not mean low.
And yet…. Her biggest challenge with the cute pink CGM? Overreacting. “I have to stop, Mom,” she told me. “I have to use this as a guide and not a rule. I have to trust what I know about my blood sugars and not let this make me react differently.”
And it’s been a challenge. And a burden. In other words, the lure of the amazing data even eggs a long-timer on to making decisions that perhaps sometimes should be set aside for a bit. Of course folks newer to this are going to drill down to a place of constant intervention. If a veteran of all this feels the lure, how would a newbie ever not?
So here is what all that me wish: I wish that the companies creating these amazing products would find ways to fund special programs to help diabetes educators and doctors help their patients learn how to use them as guide and not a rule. I wish that we could, as a community, embrace the tools but know too that we are not yet at a place or complete mastery over Type 1 diabetes. I want patients and parents to be have these tools better their entire lives, not just their a1cs. The companies are making bank on us. Why not invest some of that bank in events where real patients share real information and medical experts – both of endocrine background and mental health background – can come together and find the best “middle ground” for using these tools at this time? Wouldn’t that cut down on device burn out? Wouldn’t that help everyone use them better? Wouldn’t that bolster the company’s feel-good reputation and give the diabetes community confidence in them?
Because with that, I wonder if there is another option besides “Burden or freedom?” If somewhere between those two choices is a sweet spot (oh, that’s a good pun, isn’t it?) a place where using the right mix of new technology and good old-fashioned common sense and patience, my daughter – and everyone with T1D – can feel good on a regular basis and not feel the sometimes soul crushing burden of dealing with diabetes.
I am proud of my daughter and her “diabetes wizardry.” I want it to stay that way. But in reality, I understand what she reminded me of: all this is still an unimaginable burden. True, she’s carrying it well. But she has the benefit of that education in the dark ages.
How about it, device companies? Can you find a way to help newbies learn some old-fashioned stuff to make your new fangled tools better tools for a well-rounded life with diabetes?