I learned the hard way quite a while ago to take my “D-stuff” when I go out, even if it’s just to the shops 5 mins away.

I have an Uchi makeup bag with a couple of zippered compartments with exactly the right slots. In it I keep a blood glucose testing kit (an Accu-Chek Nano, my favourite meter), a syringe (I can get insulin from the reservoir in my pump if I have a problem, or get myself home), some jelly beans or glucose tablets and some migraine meds, just in case. On longer outings, or if I’m going to be stuck somewhere, into the bag goes some insulin, plus an infusion set, reservoir and some SkinPrep for a full pump site change in case it gets yanked out, there’s an occlusion or some other problem.

I always test before I drive. We have driving guidelines in Australia: “Above 5 (90) to drive.” Guidelines only, not law, but to be heeded nevertheless. We also have guidelines about not driving after a severe hypo that requires intervention by others. I’m used to testing before I drive. It’s a habit.

My handbag ends up heavy. I also carry my giant wallet, a notebook and fountain pen, a hand fan, tissues, lipstick, mobile phone, and sometimes a real book or my iPad with iBooks on it, and more. Sometimes it feels like I’m carrying bricks!

It also helps if I use my testing kit, while I’m out. Today I learned that one the hard way too.

I tested about 10 minutes before I went out. My BG was in range. I grabbed my keys and bag and drove to the local shops. I went to the greengrocer. Dropped in to the doctors surgery, got an appointment, waited only 10 minutes and was in with the doc for about 10 mins. Went to the pharmacy, maybe another 10 mins. Didn’t think I’d walked all that much. Not like taking the dog for a walk. All up, I’d been out around 40 minutes – maybe 55 minutes since I’d tested.

Drove home and tested because by that time, my pump was beeping at me to test – I have reminders set for an hour after I enter a BG reading and/or bolus. Works for me.

Quite a surprise when I saw my BG was 3.1 (56)!

I even tested again, just to make sure, and I had absolutely no idea how long I’d been like that! Certainly not when I left home, but clearly I drove home on that. Oops! I had a fleeting thought that 40 minutes out wasn’t going to make much difference. How wrong I was!

So now I’ve learned another thing the hard way – test on the way out AND on the way back if you’re going to be longer than 15 or 20 minutes. I drove home on a 3.1 and had no idea! I was in no danger and drove perfectly normally for the 5 minute drive home, but it’s still a really bad idea to drive when you’re low. I felt absolutely nothing until I started tearing open a packet of jelly beans and my hands were shaking slightly. I didn’t have my usual ‘eyes go funny’ thing, which I usually have when I hit 3.2 (58). No sign whatsoever!

Lesson learned.

While I was catching up with my reading this evening, I came across something from Kelly Kunik’s blog.

She was having brunch with friends and one of them remarked that Kelly would have to take extra insulin for the fruit she’d ordered, and suggested that Kelly order a side with less carbs. The bit that made me roar laughing was when Kelly thought in her head… Maybe you could ask for an extra side of Stupid with your oatmeal!.

The real crux of the issue is as Kelly says: “SO why should I, or anyone else for that matter equate taking more insulin to cover a certain meal or food item with being bad?? If I didn’t have diabetes my pancreas would automatically secrete insulin to cover a pineapple or a cupcake, or a pineapple cupcake for that matter, so why is that considered OK?”

The full post is here:
YES, I Do Need To Take More Insulin To Eat That – SO WHAT

We know two things (amongst others): (1) blood glucose spikes contribute to long-term complications, and (2) those spikes can translate into a not-so-great HbA1C, which equally heralds long-term complications, and short term – feeling like… um… crap.

There are recommendations for how high blood glucose should go after a meal, and recommendations of what your HbA1C (3 month average blood glucose) should be. These don’t necessarily equate with the evidence. In both cases, the recommendations are likely a little too high, but if you’re not at least at the recommended levels, it’s up to you if you want to improve things – your body, your choice.

It’s certainly not up to a friend to make comments of any kind, well meaning or not. Every last one of us with diabetes is responsible for our own diabetes management. We have quite enough to deal with, without the so-called well-meaning offers of clueless advice from others. Whether we have to take more or less insulin for one food or another, as Kelly says, so what?

Here’s the rub though… what one person does to get a great HbA1C and few spikes after meals, won’t be exactly the same as what another person does.

Some people can get away with eating more carbs and not having big spikes (or lows for that matter). Others can’t. Yet others make decisions not to worry about things that some do worry about. We’re all different. I’m one of those who can’t do too many carbs. It’s not always an insulin management issue for me (although for many people this is exactly the issue), but mostly an insulin quantity issue because insulin loves to create fat on me. It may not for others.

The kind of inanely stupid comments made by many people to those with diabetes, are completely unnecessary and entirely uncalled for, for the very reasons Kelly says.

People without diabetes have working beta cells that match endogenous insulin to food, automatically. People with diabetes on insulin do exactly the same – matching insulin to food, but with exogenous insulin, injected or via an insulin pump. The result is intended to mimic what the insulin producing beta cells do, but essentially it’s a crude version of the real thing. The artificial process, at this stage of medical and technical advancement, is far inferior to how endogenous insulin works, but it keeps us alive in the best way currently possible. 100 years ago, we wouldn’t have survived without that external insulin. In the scheme of things, we’re doing great.

No matter what kind of diabetes, it’s firstly an insulin problem, but more importantly it’s a problem of carbohydrate/glucose metabolism.

We all react differently to different foods. We all take differing amounts of insulin, at different times of the day. The same meal for two people could require completely different amounts of insulin. It’s not a one-size-fits-all.

If someone with diabetes tells me they can’t control their blood glucose, and wants advice, I’ll gladly relate my experiences if that’s what they want to hear. I’m by no means perfect, but my HbA1c is well within the recommended range, so some of how I got there might be helpful to consider and discuss with their medical team. Invariably I find out that their carb consumption is quite high, and/or some basic rules of management aren’t being followed. For all the reasons that people like Bernstein say, high carb consumption just doesn’t work for quite a few people with diabetes, yet it works fine for others. (And I’m not specifically talking about a few pieces of fruit.) Congratulations if it works ok for you and you don’t have after-meal spikes and a decent HbA1C etc, etc.

What I’m saying is that if you have a decent HbA1C, no paramedic-requiring lows and you’re doing just fine with only one or two mild lows a week and very few spikes, then your doctor will probably say that’s great!

If you’re not one of those people, and you are struggling, then if it were me, I’d be removing all the carbs I could from my diet and starting from scratch. That means finding what each food I want to eat does to my blood glucose by checking at 1, 2, 3 and 4 hours after eating it (more if it’s a fatty meal), and deciding whether it is a food I can eat, or one I’m having trouble with and probably want to either manage differently or leave out completely.

It never ceases to amaze me what foods some people with diabetes can eat without major blood glucose highs. Likewise, what I can eat that others have trouble with.

Diabetes management is rigid for some and not for others. Also a personal choice. Theoretically, if you have insulin to cover it, you can eat anything. It doesn’t always work that way in practice.

Kelly can clearly manage fruit (even if she couldn’t, it’s still her choice to eat or not eat it). Generally, I can’t do fruit unless it’s only around 10 grams of carb or less, I eat some protein with it, and I bolus insulin early enough. Just Kelly’s metabolism versus mine. Nothing to do with good/bad, right/wrong… just different.

Fructose, even as part of whole fruit with its own fibre, goes into my bloodstream faster than a speeding bullet. For me, fruit is great, especially fruit juice, for treating lows. It’s not at all my low treatment preference – pure glucose is, but that whole fructose issue is another matter entirely, which I’ve blogged about before.

The crux of this post? Whether you have diabetes or not, if you are not directly involved in the other person’s medical care (a medical person, a parent or caregiver etc), it’s not up to you to judge, attempt to help, or in any way comment on what an adult does or doesn’t do in their management of diabetes, unless they specifically ask you. Ok, yes there are times some encouragement may be appropriate when people end up in diabetes burnout or when complications set in that could be halted with better management – even then you’d have to tread very carefully, despite good intentions, and it’s not what I’m talking about here.

Too many people without diabetes think they have some valuable advice for someone who has diabetes. It’s usually not valuable, and more often than not, not even science-based.

Unsolicited advice (often completely incorrect) and judgements are never welcome!

While diabetes management has many generally accepted principles, there’s quite a bit of leeway within those principles for individual preferences and methods of management. Quite a few roads lead to Rome.

You can ask me any question you like, but if that turns into judgement or unsolicited advice, like most of us with diabetes, I will likely tell you how unwanted, insensitive, incorrect and judgemental your comments are. At the very least, like Kelly, I will think it.

If we want to eat something that you don’t think we should, it’s time to change your thinking, not ours!

Please, please watch what you say!

Last weekend, while doing yard work, I got attacked by midges and mosquitoes, despite having liberally sprayed on some useless bug repellent. I’m incredibly allergic to these little critters, thankfully just with a local reaction. But what a reaction it was! As you can see on the right, a few bites on one arm turned into what looks like an awful disease on my arm. It’s on both arms, legs, shoulders, scalp (how’d they get in there?), forehead and fingers.

Nothing would stop the itching – not cortisone cream, not Telfast, not Phenergan, or any other lotion and potion I threw at it. All my skin was crawling! It’s now 6 days later, and the itching is starting to subside slightly, but not enough for me. I still feel like I could punch a hole through a door. I’m thoroughly sick of sitting on my hands during the day, and scratching myself to bits when I can finally get to sleep! Pinetarsol has helped a bit – a dastardly concoction of pine tar, which makes you stink! Many years ago, I made a concoction out herbs, tea and creams and it worked a treat for bites. I thought I’d never forget the recipe. Hmmm… I did! It was magic stuff and I planned to market it and somehow got sidetracked.

I’m happy to report that despite open sores, the cortisone cream had almost zero effect of my blood glucose, whereas injections in to various joints in the past, definitely has made me go sky high.

Earlier in the week, while still scratching myself silly, I saw my endo for my 6 monthly visit. I got my A1c, which had to be adjusted for high haemoglobin. He adjusted it, from 6.7% to 6.5%, which is strange because last time he adjusted my A1c from 6.9% and said I was 6.2 or 6.3%. Haemoglobin the same. Odder than odd, don’t you think?

I set to work to find a formula. With all the calculators and converters out there, you have to be careful which one you choose, according to whether you’re calculating from mean plasma glucose or whole blood glucose. In any case ,after much checking, calculating to formulas and putting numbers in converters, I’ll take the most conservative one at 6.4%, although I’d love the 5.7% that one calculator gave me.

My endo’s offsider, who did my physical exam, found my neurophathy has completely resolved! That’s taken a few years, but I’m pleased to report success. He also apparently found a heart murmur. That was less-than-interesting to hear. I realised then that in more than one year in a new place, not a single doctor has listened to my heart and probably not for the 2 years prior either. Makes you wonder. Hello? I have T1, diabetes and am over 50.

More tests coming up, no doubt to find out that the murmur is a result of misdiagnosis and uncontrolled blood glucose for far too many years. Times like these I still get cranky at the misdiagnosis.

On the other hand, cranky won’t get me anywhere.

I was reminded last week of some wonderful philosophies, this time in a different guise: The Four Agreements and The Fifth Agreement (Don Miguel Ruiz), both of which I now have as audiobooks read by the mellifluous and very soothing voice of Peter Coyote. I know the material, which tends to waffle on a bit, so dear Peter has put me to sleep several times this week. It’s very difficult when listening, to remember that they are not Peter’s words. He’s most definitely the best voice-over guy in the business.

These are all things I learned way back in the early 1980s, in the days of Insight and est, in the 70s with New Age philosophies, and in the 90s when other gurus were taking these ideas and making them their own. Even back in the 70s, it had all been said before. Think of Florence Scovel Shinn back in the 1920s, who wrote what was the 1920s version of The Secret, plus others way before her, with roots in ancient Kabbalah, which has ideas similar to Buddhism. If anyone has read The Jew in the Lotus, you’ll know what I’m talking about.

Whatever ways you learn, not all of it sticks, all the time. When your life goes off the rails, which mine has over the last year or two, having thrown myself into an environment I don’t much like, with unbelievable stress, it’s good to be reminded.

I’m excited to be going on a meditation afternoon up into the hinterland, sometime after Easter, and then, a while after that, a 4 day daily retreat with a Tibetan Lama. Details are sketchy, but I’m happy it’s on my horizon.

So, what has all this to do with a diabetes blog? Absolutely nothing except that there’s much more to me than just diabetes, and it’s good for me to digress sometimes.

So that brings me to the Chaharshanbe Suri celebration held on Tuesday night. It’s an ancient Persian custom dating back to Zoroastrian times. It’s a festival held before the Persian New Year (Nowrooz), also called the Festival of Fire. It was held at a local venue with mostly Iranians, but some Afghanis, and then me, related to the Persian community by marriage only. Lots of dancing, Persian food and jumping over fire to ward off evil spirits. I went last year as well and loved it equally.

I’ve been scratching between writing this, dipping my various rashes and bites in Pinetarsol, then all sorts of creams, and generally feeling annoyed that likely the only way to give me some relief is to knock me out. No time for that, but it’s definitely been a busy itchy week!