In Which My Daughter's A1C Is Not a Grade

Kittygirl had her quarterly visit at the endocrinologist office yesterday. She actually doesn't see a doctor, but rather a nurse practitioner within the practice with an endocrinology specialty. We had a personality clash with the doctor to whom we were initially assigned (purely because she was on call when Kittygirl was in the hospital), and a local friend recommended the nurse practitioner, whom we love.

Because I can't post a picture of Kittygirl, I'm sharing a picture of the book she was reading during the appointment. As you may remember from previous posts, I have been frustrated by the fact that, while she reads very well, she only chooses to read if a book catches her eye and most of those books are graphic novels. She picked up this little book at a Little Free Library box near her school (these are great, google them if you don't have them in your town) and literally refused to put it down from that point on. We had to pull it out of her hands so she could be weighed and talk to the nurses.

Anyway, based on my completely unscientific research consisting in the reading of blogs and Facebook posts, it seems as if a lot of adult T1Ds and parents of young T1Ds dread every endocrinologist visit. Many people feel judged by their endocrinologist if their blood sugar results aren't meeting the goals that their doctor has set.

This is a tragedy. Of course, it's best for a type 1 diabetic's A1C to be as low as possible without significant incidence of low blood sugar, and it's important for those using CGMs to continue to increase their time in range. However, it's never right for a medical practitioner to make patients or the parents of juvenile patients feel bad if they're not meeting these goals. The A1C and time and range are data points. If they're not where they should be, that's a call for the doctor and patient to work together to figure out how to change dosing, eating, activity, or whatever is necessary to move close to the goal.

The one case in which it might be permissible for the doctor to react negatively is the case of a patient who has stopped taking insulin regularly and is seriously putting their life at risk. In this case it could be permissible to attempt to "scare the patient straight." Even in this case, however, the subject should be approached with compassion and not with anger.

Despite consistently achieving an A1C that impresses our practitioner, I refuse to look at the A1C as a grade that says we're good diabetes students. The fact is, we started with a lot of advantages. We're able to afford the latest technology. We're intelligent and well-read and did a lot of our own research that has helped us manage Kittygirl's diabetes. We're not afraid to step out and make our own decisions about diabetes (with the blessing of our practitioner). Not everyone has had our experience.

Some people are struggling just to afford the basic insulin and blood sugar meter. They may  not even have a prescription that allows them to test their (or their child's) blood sugar often enough to understand blood sugar patterns and make adjustments. Or perhaps their doctor's protocol doesn't take into account the most recent research but it's the only doctor in their town and it's not within their resources to look elsewhere.

With the exception of people who are burnt out and truly not caring for themselves well, every adult with diabetes and every parent of a child with diabetes is doing their best with the resources they have. In this context, I believe that comparing A1Cs is counterproductive. Whether you're sharing your/your child's amazing low A1C to celebrate it or sharing your/your child's high A1C to commiserate, it doesn't actually do anyone any good.

Diabetes involves a lot of data. That data, including the A1C, is a useful tool to help us figure out our next steps. That might mean continue to do what you're doing, or it might mean you need to make some changes. Either way, sharing your/your child's A1C on Facebook isn't going to help you with that.

In Which I Explain Why This Post Was Almost Never Written

This blog almost died right after the first entry. Why? Because my logical husband made me question if what I'm doing, in writing about challenges my kids have, is ethical. Why do I have a right to post publicly about people other than myself? I thought I was doing the right thing to protect their privacy by not sharing their names or pictures, but then the pointed out that I had shared my name and picture, and that, with that info, someone could fairly easily identify them. I understood his point, but I was also annoyed that, when I shared that I had finally taken a step to do something I'd been dreaming about for years, his first reaction was to question if I was doing the right thing. This is especially important for Squirrelboy, since he is at an age where he's very sensitive to the way his peers view him, and he's not so many years from applying to schools and/or jobs, to which he may or may not want to reveal his disabilities.

Ultimately, since I'm writing this second entry, you can probably figure out that I decided to press on. I did, however, remove my  name and picture from the blog. So I ask that, if you're reading this and know me (which is everyone who reads this at this point), please feel welcome to share this blog widely, but remember not to share our names. I feel it's acceptable to continue in part because I've also cleared it with my family. As long as I keep them anonymous, they're okay with being written about on this blog.

This does bring up an interesting point about our society. When I was growing up in the 1980's, as a general rule, only people you'd actually met in person and saw fairly often knew about your day to day activities. You might tell your best friend or neighbor about the funny  or weird experience you had in the grocery store, but you wouldn't write something about it for hundreds or thousands of people to read, some of whom you'd never met. That is, however, how many of us (myself included) use social media. I don't think this is all bad. Facebook has allowed me to maintain relationships with people I would otherwise have completely lost touch with. However, it has also created a weird category of people I know slightly (fellow church members, for instance) and would normally not have a close relationship, but whose lives I know a surprisingly large amount about. I might not ever hang out with Sally from Sunday School, but I know her sister in law came over for a barbecue last weekend, she's looking forward to a trip to Disney World in October, and she supports universal background checks for gun sales. Sally is, in case it isn't obvious, not a real person, but Facebook "relationships" like that are very real. It's weird to have a window into what people are doing and what they feel strongly about when in any other context you don't know them well and they'd be unlikely to share that information with you.

Reading a blog written by a stranger or an acquaintance is like that too. This person you don't know or hardly know is giving you a window into their thoughts and/or lives that previously only have been given by a tiny subset of people who write memoirs. I have considered writing a blog for a long time, however, because I think there's at least as much potential good as potential bad in this somewhat strange circumstance that our society has created. During various points of my life, reading blogs related to a struggle or challenge I've been going through has been immensely helpful to me. Sometimes because the blogger had things to teach me and other times because it was helpful just to know that I wasn't the only one who had ever had these experiences or felt these feelings. I'm writing this blog in large part for myself, because I'm seeking a new way to express myself. However, I also hope that my thoughts and experiences can be helpful to some of my readers, whether they give practical advice or strategies or they just give reassurance that you're not the only person who has these feelings and these experiences.