Diabetes Blog Week 2013: Share and Don't Share

*blows dust off blog* I know I haven't updated this poor neglected blog in a while, but this week is 4th annual Dblog week, and I had such fun doing it last year I thought it would be a good way to get back into the swing of things. :)


Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one's daily life with diabetes? On the other hand, what do you hope they don't see?  (Thanks to Melissa Lee of Sweetly Voiced for this topic suggestion.)

 I generally have a pretty good medical team - the DSN's are fantastic, and when I actually get to see my endo he's awesome.  However, I've had some issues with other doctors, and there's a couple of things I'd like them to see. Firstly, that diabetes is not just about numbers - there's a person, who's trying to live a normal life, and deal with all sorts of other issues, and juggle a chronic condition on top of it. Secondly, that diabetes doesn't always play by the rules. I might not fit into your little tick boxes and textbook definitions - that doesn't mean I'm doing things wrong or that I'm a "bad" diabetic.

When you look at my logs and you pounce on out of range numbers and demand an explanation, it makes me feel like I've failed, that somehow by not keeping all of my numbers in range, I must be doing something wrong. It's like being a child hauled in front of the head teacher. Instead, I would like some support, and encouragement.  An acknowledgement of the work and effort I put in to get these results.  Diabetes management isn't perfect. Life isn't perfect.  I would like you to see that, to ask how things are in general, if anything in my life has changed, if I'm having any issues with my diabetes management that I'd like to discuss.  There are so many things that affect my numbers, and insulin and food are only two of those.  When you focus on my logs and those numbers and don't see anything else, you miss all those other factors, and you can't help me.  You can't help me figure out that the reason I sometimes have highs on a Friday evening is because I get stressed out sometimes at lab meeting. You can 't help me decipher those patterns if you're not willing to look beyond the numbers to the person behind them.

In terms of things I don't want them to see? Well... there are many! The times when I wake up in the middle of the night and I'm low, and I don't even bother testing, I just grab some fruit pastilles from the jar beside my bed and go back to sleep (I don't do this all the time)... the times where I get so overwhelmed with carb counting something new or complex that I just take an instinctive stab in the dark...the weird things I do like add 35% extra insulin when I have a large amount of carbs (hey, it works for me).  So many things! Though I guess, if there was some forgiveness of out of range numbers and acknowledgement of life influences, I may feel less guilty about some of those things.

Diabetes Blog Week 2012: Fantasy Diabetes Device

Thursday 05/17 Today let’s tackle an idea inspired by Bennet of Your Diabetes May Vary.  Tell us what your Fantasy Diabetes Device would be?  Think of your dream blood glucose checker, delivery system for insulin or other meds, magic carb counter, etc etc etc.  The sky is the limit – what would you love to see?
So there are many cool things going on in the world of diabetes right now - the artificial pancreas, the search for faster insulins, more accurate CGMs etc

So I'm not going to talk about them, but if I could wave a magic wand and have any diabetes device I wanted? I would have a magic carb counter.  Something that I could point at a meal, a piece of cake, a bowl of fruit, anything that I a about to eat and press a button and "bing!" it would tell me exactly how many carbs are in it. That would be awesome.  It would take so much of the guesswork out of managing my diabetes, especially when eating out, or away from home.  Hell, even at home when i just want to have a handful or grapes or some ice cream or something without actually weighing it or measuring it.

Not to mention those times where you're out and you order food and when it arrives it's one of those things that are really difficult to count (and don't get me started on sauces or soups - it's so hard to guess what people have put in them!) Or like when I used to go to formal halls when I was doing my PhD (basically fancy three course meals held at different colleges) and I'd be served something and have no idea what it even *was* never mind how to count it...

It's not a huge thing, and I doubt we'll ever get anything that will be that amazing, but it's one thing that I dream of. I'd love to be able to just eat food and take one of the variables out of it. That would be awesome. :)

Variety is the spice of life? Not if you're diabetic...

I've had a week of absolutely shocking BGs. I had a bit of a cold, but no worse than others I've had, and colds don't normally affect me too much. This time, however, I was seeing the high teens at least once a day, even with constant testing and correcting and temp basals. I was starting to get really worried and considering getting in touch with my DSN, or possibly my liver doctor (since the last time my numbers went nuts like this it was a sign that my liver was under attack), when I woke up on Friday with a BG in range, and they stayed like that all day, without need for temp basals or anything.

It got me thinking. I've said before that one of the things that I find most frustrating about living with diabetes is the apparent randomness that creeps in and affects your numbers.

There are so many variables to consider when we see a BG that is higher or lower than we'd expect. Is it a one off, or is it a run of them? If it's a one-off, you start trying to work out why - did you mess up the carb count of a meal? Did you forget to bolus? Have you been doing exercise/sitting doing nothing? Has something happened to stress you out? Is it a bad set? Have you somehow managed to kill you insulin? Is there a bubble in the tubing? What about insulin absorption or the kind of food you had? If it's a series of highs/lows, then a whole other set of considerations come into play - are you getting sick? Is it hormones? Is it a change in the weather? Have you changed weight? What about activity levels? Is there a pattern or is it just random? Basal or bolus? And a myriad of other possibilities.

Then, if you spot a pattern emerging, you have to deal with it. Sometimes it's straightforward - you're rising every day after lunch, you know your basal is right at that time, so you increase your insulin at lunch and that sorts it out. But then there's the other tricky little buggers. The ones where you've notice that it happens when you eat pizza, or do a particular type of exercise, or have a stressful time at work or some such.

So you have to try and sort it out, and the way to do that (like in so much of diabetes) is through trial and error. You can talk to other diabetics to see what they do, you can try altering an insulin dose or use a temp basal, alter carbs, or the timing of bolus. There are so many options, and even within those there are yet more variables - you decide to try a temp basal but how much? and for how long? You try things, test to see how they're working, and then you tweak, or you try something else. It's the only way to really do it, but the cost of making a mistake can be so huge - you end up low or high, and maybe it's only a little bit and quickly sorted out, but then there's the time it goes really wring, and you end up with a low that just won't come up, or you end of with ketones, or something else goes wring and you end up sitting there feeling like crap and wondering why you even bother.

Someone once told me that trying to manage diabetes is like trying to do a jigsaw puzzle when the pieces keep changing, and it just struck me as so true. What fits one day might not necessarily fit another, and we have to do this every single day. Things that other people take for granted we have to think so much about. Going for a wander around town, going to the cinema, having a drink with friends, having a busy day at work, eating, exercising, and a million other things. We do this every day, trying to cover for a part of our body that's gone on strike, that should do this automatically, responding to changes in our body and tiny little signals and information in increments that we can't possibly hope to achieve.

And yet we do it. We soldier on, we do our best, and we go on with our lives and refuse to let this condition defeat us, and (most of the time ;)) we do it without complaining or asking for any kind of recognition, or turning into babbling wrecks rocking in a corner.

And you know what? I think that makes us pretty damn amazing.