Finding Balance in an Unbalanced World of Diabetes Support and Education

Nature often plays a delicate balance,
like these two bugs holding on against
the wind, behind these delicate, white
blooms.  It's a rainy, cold, and wet
 day, in Iowa.  Fall is just around
the corner. (September 11, 2008)

One of the biggest challenges, when helping newly diagnosed persons with diabetes, is finding balance in the information provided. Helping create a positive environment, which encourages a person to learn the scope of the disease and its complications, but still keeping their heads above water. No matter the diabetes community -- this is a struggle that I have found almost everywhere. Even in my own diabetes groups.

Whenever I share any information, my hope is for you, the patient, to be able to make your OWN decisions -- and not make MY decisions as yours. I have this crazy idea that, when empowered with basic information, people will tailor their diabetes regimes to their own circumstances, and find balance. That I don't need to tell anyone what to do, and that since this is diabetes we're talking about, what has worked for me... will definitely, and not necessarily, work for you.

The problem is that diabetes is a dick. Diabetes doesn't play fair, and it doesn't give two shits about our feelings. It doesn't. It doesn't care that the news of the things it can do, can scare us, nor does it politely pass us over when we decide to close our eyes against it. So... sometimes, this harsh bit of reality might lead people to behave in one of two ways: either by becoming inflexible with their ideas of control, or by becoming completely lax in their control. Neither of these two ideas is good, even if one of them has much, much better numbers.

Inflexible Control

There's nothing wrong with having tight control. In fact, international diabetic guidelines call for patients with diabetes to aim for postprandial (after meal) numbers which are less than 140 mg/dL at 2 hours. For some time, I belonged to some communities with large numbers of internationals (people in any number of countries, outside the United States) -- and they consistently made their goals to be 140 or less, and never once did I ever see anyone complain about that, or try justify a much higher goal, or A1C, without some serious reasoning behind it. Sure, no one's perfect... but it IS the number they shoot for, so, it is the NORM for the world to shoot for those numbers This is, also, a number which even the American Association of Clinical Endocrinologists endorses. The American Diabetes Association is pretty much alone in their call for persons with diabetes to keep postprandial numbers at less than 180 mg/dL (but even they have this caveat under their goal guidelines: "More or less stringent glycemic goals may be appropriate for each individual.") 

The fact is that the LIKELIHOOD for damage and/or complications caused by high blood sugar increases, in a correlated manner, the higher the blood glucose level is... and that correlation begins at 140 mg/dL. That's really scary. Not only that, but the risk for heart attacks increases by leaps and bounds the higher our A1Cs are. This is basically truth. This is not my opinion... it's not my way of calling people to go eat nothing but twigs all day, nor raw dieting, etc. IT IS THE UNVARNISHED TRUTH. 

The problem is... some people use that truth to assume that everyone must tackle their diabetes in the same way. In fact, some persons are so disturbed by the potential damage of diabetes, that they push for normal, non diabetic numbers, near <90 mg/dL fasting, and <120 mg/dL postprandial. If one can pull that off, that's great. I do it all the time, and I shoot for it... But it's really not something that is ideal for everyone, nor should we expect everyone to easily overcome what we can. We are not all the same. And in fact, the likelihood for complications is also, very strongly determined by genetics. One can have great control, AND STILL GET COMPLICATIONS! So, if someone worked super hard to attain control (out of sheer fear), and they still got complications... what kind of setup for disappointment are we creating? Nothing is truly a guarantee. We do the best we can, and it doesn't really help to overfocus on the axe in the ceiling. 

So here, you get people who may be well intentioned, and caring, and wanting to help others achieve control, pushing things like raw dieting, alkaline dieting, paleo dieting, and Atkins or Bernstein dieting, etc. This is not a basic truth a person with diabetes needs to learn. One's chosen diet plan is NOT a basic truth a person with diabetes needs to learn. 

Persons with diabetes need to learn: 

• What diabetes is -- a condition in which the body can't use glucose adequately, because the pancreas has either stopped producing enough insulin (which can be fatal), or has lost sensitivity to it (or sometimes both); 
• What glucose is -- a type of sugar in which our bodies convert food, to use as fuel for energy. It is NOT the same as table sugar, nor is it exclusively derived from sweets. The body converts ALL foods we eat, from one degree to another, into glucose. 90-100% of carbohydrates, 50% of proteins, and around 10% of fats get converted into glucose. Table sugar and sweets are just another carbohydrate;
• What a glucose meter is -- a tool which allows us to measure our blood glucose, and how it is affected by the foods we eat (mostly the carbohydrates we eat), exercise, illness, medication, stress, temperature changes, hormonal changes, etc; 
• What carbohydrate counting is -- a total, daily, number of carbohydrates we allow ourselves in our diets, in order to control blood glucose levels. We can adjust it in our meals (cut back on it, or add more) based on our glucose meter readings, and divide them up through the day, between three meals, and snacks. We are the most insulin resistant in the mornings, and the most receptive in the afternoons; 
• What insulin is -- a hormone, which under normal circumstances, is produced by the body in order to help the body's cells and muscle tissues uptake glucose. Insulin takes up glucose found in our blood streams and uses some for immediate energy use, some for energy reserves (like when we need to wake up in the mornings), and some for storing as fat, etc. Insulin itself does not make one gain weight; overeating, and particularly overeating too many carbohydrates, can make one gain weight, because they a.) put too much glucose in the system, and in persons with type 2 diabetes, b.) may lead to too much insulin in the bloodstream;
• What insulin resistance is -- insulin resistance is a condition in which the body's cells are not able to bind with insulin, effectively, which would have allowed the entrance of glucose into cells for energy use. The body then finds itself with excess glucose floating around, so then the pancreas produces more insulin to try to take care of the matter. If the excess glucose is not taken care of, again, the pancreas will keep producing insulin. This creates a condition known as hyperinsulinemia -- or excess insulin in the blood stream, which can lead to weight gain, as a lot of that excess insulin tries to manage the situation best by storing that excess glucose as fat. One of insulin's functions as a hormone is to store glucose as fat, for potential energy stores. 
• What the treatment alternatives are -- which can run the gamut from diet and exercise, to diet and exercise + oral medications, to diet and exercise + oral medications + insulin, to diet and exercise + insulin... but ALWAYS diet and exercise is a requirement for ALL types of diabetics. No exceptions. 

Note -- insulin deficiency doesn't just make one

'lacking in energy,' it can also make one dead. It is a 

serious condition, not to be taken lightly.

If a person KNOWS how all of these work, then they can decide what to eat. They don't need an extreme diet, "diabetic cookbook," or really, anything else. One counts carbohydrates, one tests pre and post prandially, and one learns from those measurements. "Oh, no! It looks like that plate of whole wheat pasta was NOT a good choice. Maybe I ought to cut back to 1 cup, and maybe add some broccoli, and some chicken on the side... or maybe I ought not eat any pasta, at all." Learning is what we do here. We are little scientists of our own planet. We colonize our OWN planets when we have information. 

There are dangers when we tell other people what to eat, or get them to lower their glucose levels too quickly... it can sometimes lead to ketoacidosis, people often have heart conditions, allergies, particular health conditions, genetic high cholesterol issues, other dietetic restrictions they may need to follow in order to manage OTHER conditions... or they might simply be a growing kid, etc. It's truly not up to us to tell people how to eat -- only to give them the basic information so that they can make an informed choice. Honestly, that's a hell of a lot more than most doctors do, right now, for type 2 diabetics. 

We blame type 2 diabetics a lot for not taking care of themselves, but we should be blaming many of those people's doctors, instead. If I blindly trusted my doctor, I'd be in no better position than most folks I know... who think they can just pop a pill, and forget about it. 

But... unfortunately, a lot of people live this way. "Pop a pill, or take insulin, and forget about it." 

Laxed Control

Some folks take on the attitude that it doesn't matter... That because nothing is guaranteed, then nothing matters, at all, so... "please stop showing me that I can get complications, because then why should I bother taking care of myself?" It can become quite hard to educate whoever might be new to the disease. And educate we MUST. We cannot avoid these parts of the disease education. 

Diabetes is hard, but maybe we can become a bit self entitled, or spoiled, sometimes? Some persons have real critical conditions -- with no real hope of avoiding some awful things -- yet they still care for themselves. They do so because LIFE MATTERS; our families, and our loved ones MATTER... WE matter... and it's better to be informed, then to be caught off guard. Life just happens to all of us... and that's no reason to live in fear. In fact, I find it helps me live in peace. It just is what it is. Not to be morbid here, but do we honestly know of anyone who, barring some accidental event, is not going to get sick and die? It's just life.

I've also known persons with diabetes who have literally advised others to not bother taking care of themselves because they have spent all their teenage years being a 'bad diabetic,' and now they have none, or minimal complications, to show for it... so that people should have nothing to worry about. I kid you not. People who have advised others "Oh, I was pregnant and had horribly high A1Cs of like 13% or higher, and all my kids were born healthy, so don't worry about it." That is the height of irresponsibility. One person's GENETIC LUCK is not another person's health regime.

That doesn't stop there... it's the same culture who encourages parents to keep kids at A1Cs of 8% or higher, for no real reason. The reasons are mostly a whine -- assumptions of kids rebelling, some references to kid's biology being different which I have never seen any proof for, and wanting kids to be like everyone else. 

Listen, don't get me wrong... everyone has the right to pick their A1C goals as they see fit. It's hard for me to comment on many of these issues because I don't have any kids... I don't really have a place of 'emotional authority' in order to appease most people, so that I can give my two cents. But... from what I know about childhood, and coming into one's own adulthood, learning moderation, and learning the discipline to control things like finances, cleanliness, diet, exercise, and emotions happens in childhood. Chronic illness would also fall under that. Obviously, not all children are the same... and some might have some real challenges at keeping a lowered A1C, but truthfully, those are potentially dangerous levels, with some real potential complications. If it's not a paramount necessity to risk it, why do so? Doctors tend to keep kids at high A1Cs, when the circumstances don't call for it, for the same reason they tend to keep type 2 diabetics from access to insulin, when the circumstances DO call for it -- FEAR OF LIABILITY. Fear that people are not smart enough to manage their own kids, without killing them with lows, or manage themselves, and lead healthy lives. There are plenty of kids with A1Cs at the 6% range, and doing just fine. Also, plenty of type 2 diabetics using insulin, and doing just fine. 

To be honest, I don't trust anyone's judgement very much, but my own, with this disease, and my own research. I don't. So I respect when people use their OWN judgement, too. But -- they must have ALL the right information to make those judgement calls. And a doctor really needs to prove more to me, than his diploma, to gain my trust. Doctors are just archaic, more often than not, when it comes to diabetic care and knowledge. It's an embarrassment. Don't take my word for it... ask the average person with type 2 diabetes, on the street, or anywhere, what diabetes is, what drives glucose numbers up, and what carbohydrates are... and they WON'T KNOW. They won't know, and they'll somehow think they don't need to test, because some doctor or nurse will have told them it wasn't necessary. Seriously! "Just take a pill..." The IDF has called for persons with diabetes to TEST post meal numbers, as an imperative, to good control... and yet doctors and nurses are telling patients it doesn't matter.

Sometimes... people get burnt out, and I understand that. We all can get burnt out. But there are folks who just don't want to hear about control, AT ALL, nor for people in groups with a goal for education, to teach about the real consequences of diabetes, and the potential dangers of glucose mismanagement... And we just can't educate well, that way. 

This IS a chronic health condition. This CAN kill you. This isn't a toe fungus. I'm sorry that it isn't! I wish I could just treat it with some Lamisil, and have it GO THE FUCK AWAY! But diabetes, not type 1 nor type 2, doesn't have a cure. The ugly little critter is just not going to go away, even if I do keep him well confined, and restricted.

These are things we need to impress upon people, sometimes. No, not oversaturate them constantly with it... but with the realities of living with it. Honestly, I just don't know how to candy coat complications, and death. Especially when I had to live through them, with my own father. I guess I'd rather offend many of you with some talk about complications, and the risk of death, then to have you live through what I had to live through. 

----

So, when it comes to diabetes sharing, and education... I guess what I'm saying is this: a spoonful of sugar makes the medicine go down, but please, do take your medicine.

Give people balanced information, and give them the basics. People will learn what they need to do, and take a hold of their own lives. Some people will never learn, and we can't berate them -- they are responsible for their OWN lives. But, we can't hammer on again and again, with negative data... like alarmist conspiracy theorists. That's what Doctor Mercola does, and I hate that asshole. 

Also, let's not settle for living like an ostrich, with our heads in the sand against the storms of reality. The negative data is there, and we must somehow learn from it, make sense of it, and help ourselves find a meaningful, balanced place, where we embrace our lives with diabetes. If I get a complication, c'est la vie. I'll spray paint my mandatory diabetic shoes in neon, hot pink. 

Diabetes can suck it.