I had a friend ask me yesterday, as we stood in front of a bakery counter, if I could really eat the food in front of me.   As I had invited her to this café for lunch, the question would perhaps have seemed strange.  However, it was one I have been asked countless times before so I knew why she was asking—she understood “diabetes” to mean “stay away from sugar”.

A lot of people do.

It’s why I wish I had a dollar for every time someone asked me if I should be eating whatever I am eating, or if I can eat it as I put it in my mouth. 

Yes.  I can eat sugar.  No, I did not get diabetes because I ate a lot of candy.

Come to think of it, isn’t it kind of rude for someone to ask me?

It absolutely is rude, but knowing that doesn’t really make me feel any better.  Sure; I can feel like someone is incredibly impolite when they shout across the store “do you have your garage door opener on your belt?!” and I can be offended when someone insensitively says “I could never take a shot!” or makes one of the myriad of comments I am sure many of us have had to endure.

The thing is, I don’t want to be offended.  I don’t want to feel like I should hide from my disease or not acknowledge what I live with or what is attached to me or what it takes to literally keep me alive every day.  I see no need for an emotional response; I have enough of those in my life as it is.

So, depending on the time I have and my willingness at the time, I will respond to each of the comments and each of the questions.  Sometimes with a simple “yes” or “it’s my insulin pump” or sometimes I will outline the basic differences for the questioner between type 1 and type 2 diabetes.    I generally keep at least a small smile on my face.

I always want to say “you’d be amazed how easy it is to give yourself a shot if your other option is death”—but that’s just me being snarky with that particular comment I heard so often on my return to fifth grade after my diagnosis hospital stay.

I’ve replaced “blood sugar” with “blood glucose” in an effort to separate the word “sugar” from any reference to my diabetes.  I know this is a losing battle, but it makes me feel better to avoid contributing to my own frustration, so I keep it up.

But still, a dollar would be nice.

I’ve never been any good at keeping a log of my numbers.  It doesn’t help that my doctors wanted me to when I was a kid and teen.  (Not so good at doing what someone else wants me to do without at least one Very Good Reason and a lot of Instant Rewards.)

I’ve always considered that keeping a journal of my numbers, activities, insulin, food, and feelings was not as important as living my life.  I can do it for a few days, but the thought still makes me unhappy. 

My Anal Self doesn’t like my Options (and I’ve looked at and designed a load of journals)

The little boxes with the little times on them—if I check at 9:13am and then again at 9:50am, where do I put those two meter readings?  At the 9am?  The 10am?  What if I then check again at 10:30am?  Where do I put that number??  Some of the logs have only four boxes- Breakfast, Lunch, Dinner, and Evening; that system isn’t ever going to work for me!  I check my blood glucose 8-12 times a day, and rarely at the same times.

The little boxes for “exercise”—do you want me to write in what I did?  Really??  Where do I put what my meter reading was when I was on mile 4 of a 6 mile run?  What do I do when I’m leading bootcamp or when I go to IKEA?*   I’d rather just exercise and keep moving instead of trying to figure out how to record what I’m doing.

The food journal.  It is a great idea, and rather helpful when trying to lose weight or catch an unknown pattern, but for a daily log of my life, can’t I just skip it?  Writing down the number of carbs I ate isn’t enough information, since it matters what I ate along with those carbs.  (Was it straight crackers, or was it crackers and cheese?  Those two snacks will affect my blood glucose differently.  What about the veggies?)

On my pump, writing out each bolus feels cumbersome.  Yes, I have a record in my pump that I can easily transcribe, but again, transcribing seems like maybe not the best use of my time. 

Back in the day before I was on a pump and when my mom was in charge of the food I ate and I kept my meter at home, it was probably easier to keep a log.  But for the past fifteen years or longer, it just hasn’t made much sense for me as a way of life. 

Overall, I just think I’m not a Record Keeper

I just am not good at writing down what I do.  I’m not good at taking photographs, either.  I tend to see both as a kind of distraction from participation in my actual life. 

And yet, the diabetes log looms at many doctor visits.  It is a great tool for someone else to look at to evaluate my choices and decisions.  (Great.  Just what I need after 22 years of school; more evaluations.)  I really do see that it is a great tool when I’m having trouble with a certain time of day or can’t see a pattern. 

The smart CDEs have asked me to just keep a log for a week.  The smarter engineers have built meters and pumps that can download all my information to a computer for my doctor.  (Thanks for that!)  My favorite doctors, of course, are those who can read the computer printouts and have never asked to see anything I have written down.

For now, I say thank you to everyone who has ever tried to ease my record-keeping burden or erase it altogether. 

And if we ever go away on vacation, you’re the one in charge of the camera.

*I go low at least once every time I enter that store.  I don’t know why.  Magic doors?  Insulin spray circulating through the vents?  It happens at every IKEA location I’ve ever been.

I read a snippet in the ADA’s Diabetes Forecast magazine (April 2010, page 24) this morning that said many parents and kids living with type 1 diabetes reported that they tend to eat more  packaged food than bulk foods because the carbohydrate count is clearly labeled on the packaged food and not on the food made at home.

Startling to me, and extremely sad, is their further report that they avoid eating fruit because they are concerned about the carbohydrate count involved and that the incorrect counts can lead to glucose spikes.

First off, let me say I understand how it is much easier to simply read a box than it is to guess how many carbs are in any given food.  I really do.  It’s hard to visualize just how much a half cup of rice is.  Or even harder for me, spaghetti!  Long stringy noodles visualized into a half cup measuring cup is conceptually close to impossible for me.

But eating whatever we want without paying attention to it isn’t the card we have been dealt; we have been dealt a malfunctioning pancreas and we get to manage that instead of eat with abandon.  We need to recognize everything we put into our mouths.  (All things considered, especially now with made-up chemically concocted foods, though, I think it’s probably a good thing we have that skill.)

I also understand that when faced with a box of nearly any kind of cracker, I usually guesstimate, eat, then do a re-count and see what percentage of the box I have eaten.  I did this with Weight Watcher points, too.  (How many carbs or points per serving, how many servings in the box, how many points or carbs in the total box, how much of the box did I eat…)

Did you clue in on that word?  GUESSTIMATE.  This is all an educated GUESS.  Carbohydrate counting has gotten us so much closer to living our lives first and being diabetics second that to exclude eating real food so that we can more closely count the number of carbohydrates to me undermines the entire effort.  Really?  Do you mean to say you don’t eat strawberries or cherries in summer or apples in the fall because you aren’t sure if the fruit has 17 grams of carbohydrate or 23 grams?  Really?!?

Please.  Recognize that loosening our grip on some of our goals for controlling our blood glucose opens up a life lived with less stress, more options, and in the end, greater control over ourselves.

Here’s to us.