aiming for grace

1, 2, buckle my shoe.

I read an article in Time recently about multitasking. Most specifically about how much teens are multitasking today, aided by all the electronic devices that keep them connected, 24/7. The gist of the article was that even though people think they're being more efficient and effective when they are multitasking, in fact they are not. "Decades of research (not to mention common sense) indicate that the quality of one's output and depth of thought deteriorate as one attends to ever more tasks." "Although many aspects of the networked life remain scientifically uncharted, there's substantial literature on how the brain handles multitasking. And basically, it doesn't." "You're doing more than one thing, but you're ordering them and deciding which one to do at any one time." Hm, it's all kind of scary...

Which brings me to the idea that this is what we've had to do all along. Go through life, be in a meeting, have a conversation AND evaluate where we are in terms of our blood sugar...am I high? am I low?, "oh yes, please pass the salad", smile, take a blood test, oops, I'm a bit low, "oh no, the budget is fine on that project", hm, do I have sugar with me, damn no, I left it in my purse back in the office, "please fill it with supreme", where is that sugar? And we're doing all that on top of the normal multitasking that is so much a part of modern life today. Pump, blackberry, blood test machine, cellphone, pager. Wow. I feel so modern. And distracted.

what's good enough?

What is "good enough" diabetes control? I recently wrote an entry on my other blog dear ada, about the idea and appeal of "good enough". In a nutshell, getting the best in every single thing (think cellphones, hiking boots, cable plans, whatever) is impossible and trying to, means that you live in a constant state of dissatisfaction. The writer Barry Schwartz speaks eloquently about the downside of our modern obsession with finding the best in everything, in his great book, The Paradox of Choice. It's an excellent read that makes a good case about the cost of our culture's celebration of the best in all things, above all things.

What's important, it seems to me, is figuring out what things in life are worthy of the search for the best, and what things just aren't. Not only does this mean that I'm not spending all my time looking, judging and comparing but also, I get to spend more time on the things that really matter. Like having the best medical care possible, or the best relationship with my husband and friends or whatever. Energy and time are finite things, so it seems a good idea to me, to put the most of the energy and time I have, into the things that matter the most to me.

And of course, health is tops on the list. And diabetes is a very challenging and time consuming disease that impacts both the short and long term of life. For me, my diabetes care and management is really important. A top priority. And luckily, the effort has paid off so far.

But I still ask myself the question, what is the "best" diabetes state of being? I used to think that if I worked hard enough, I would achieve a perfect (read "non-diabetic") state of normalcy and all would be well. But, of course, as with any disease, there is "no perfect state" to be achieved. Over time I realized that wasn't possible and as I accepted what the realities of diabetes were, I began to understand that living well with it was all about balance. For me the balance conversation happens AFTER I've achieved good A1C's. For me, there is no debate on this. I want to start from a place of optimal health. What I think is tough after that point, is striking the "right" balance between paying the attention that diabetes demands to stay under "good control" and living ones life well. Obviously, these are not mutually exclusive propositions and the best times are when they are seamlessly in sync. I guess the goal is to have more of those times. Because diabetes just isn't a disease that stays the same. What works for awhile suddenly doesn't. Stuff happens and adjustments need to be made. I got frozen shoulder and I had to adjust my activity which affected my insulin needs. You know, life happens. And we have to adjust.

It's figuring out what's "good enough" diabetes management and results at those times. Or any time, for that matter. It's figuring it out for myself first. But it's also making sure it's good enough for my doctor and health care team too. Its knowing that I can fool myself. I'm all for lightening up at times, but I want to do it with my eyes open. I want it to be a choice not a result of denial or fatigue or frustration. Well at least not for too long. Being frustrated and not paying so much attention for a couple of days is cool. It just can't become a habit because the one who looses the most with that is me. And that's the rub. Because it's hard to always know the right balance between paying enough attention so I can live life fully, with paying so much attention to caring for diabetes, that I loose sight of living my life fully. I don't want to be the best diabetic in the world who had no life. And I also don't want to be the diabetic who ignored her diabetes and paid for it with diminished health. It's a tough one. And I think it's one of the real challenges of living with this disease. Figuring out what's "good enough".

hello there.

There is a downside to forgetting that I have diabetes. I mean it's great and all but when my life gets going at a fevered pitch like it did last week, I am often caught off guard by the fact that yes, I still have it. I'm caught off guard by a 260+ blood sugar even though I don't feel so bad. Or maybe I just don't notice how I'm feeling when I'm focused on everything else. So when I finally do slow down enough to check my BS, it can be a lot higher than I expect. Probably because I'm not eating as well as I should on these busy kind of weeks. I get going and I look up and it's 2:00 in the afternoon and all I've eaten is a bowl of granola in the morning with some skim milk. So I grab some cottage cheese and yogurt and water, and hm, yes, some cheetos too because I'm so hungry I think I deserve it (which doesn't make any sense but at this point it seems logical to me). And I scarf it all down and get back to work and finally when I do check at 6:00 p.m., I'm 265. No surprise I guess, thanks especially to the cheetos...

And I can go days like this when work is crazy. And then finally it hits me. Stop. This is bad. I have diabetes damn it and I need to take care of myself. Deadlines can wait a minute. I need to take a blood sugar. I need to adjust. And no thanks on the cheetos. Slow down girl. Deep breath. Ok now you can get back to work.

It's been pretty stressful at work lately. Lot's of changes which isn't new for where I work, but there are more changes than usual going on right now, so the tension level is up. With me. And with the people I work with too. So it's easy to get distracted from diabetes. It's easy to feel like I'm just like everyone else. But I'm not. I have this disease I need to manage. I need to remember that I have diabetes at times like these too. So sometimes it's not so good to forget that I have diabetes.

put out that fire.

First off, I am so grateful for the comments I've recieved from this blog. It's so cool to put something out there and actually have people respond. Plus to have them respond with kindness and insight is so wonderful. What I love about all this is that it isn't a conversation I'm just having in my head. There is real feedback and exchange which makes it so much of a richer process.

So in light of all that, I've been thinking about what Scott wrote back in response to my entry before and after. He kindly said that it was so not my fault that the technology of shots was not capable of matching the needs of my body and that he found it interesting that I'd feel like a "bad diabetic". It is interesting. Why is it that we feel so responsible for every thing that happens with this disease? Is it because we are taught that diabetes is "controllable"? Is it that we are in fact responsible for the APPROACH that we take, but not necessarily all the outcomes but we forget the latter part because we are so focused on the first part? Sometimes I think that I am so empowered by the time in history that I live, that I just carry that idea over into everything in my life. Whether I actually am or not, I feel like I am the "master" of my career destiny, my personal choices, the quality of my interactions with others. So of course it makes sense that I'm somehow also the "master" of every blood sugar or insulin reaction.

And then I see Scott's sentence and the clarity and truth of it just cuts through all the gymnastics I have done in my head. The technology didn't match the needs of my body. Yep, that's it. I wish I'd had that fire extinguisher a few years ago. Because it literally took me years to figure this one out. Years. Of guilt and recriminations and disappointment. And then one day it just changed. Even before the pump, I finally realized that I was doing the very best I could. Period. And as I continue to learn to be less harsh on myself, more possibilities, alternatives and gifts present themselves. Like the pump, or the idea of pace, or the OC. And also less harshness has allowed me to become more willing to grab at the joy, to wallow in it when it presents itself, to selfishly demand it whenever I can. I like the idea of more joy, adventure, celebration, gratitude and peace for us all. Because my guess is that everyone is pretty much doing the best they can with what they've been dealt with diabetes.

before and after

before.

Isn't context a funny thing? I've been on the pump for almost 5 years so I'm pretty used to "my diabetic life according to the pump". I actually forget for hours at a time that I'm even diabetic at all. During the good stretches, when I'm bolusing or taking a blood test, the results are often just fine, so it doesn't really deeply register that I'm diabetic even then. I'm so used to diabetes in general, and now, I'm so used to diabetes with the pump that it often is just second nature. Test, bolus, adjust, eat. Done. On to the next thing.

Of course, I still go through those weird times when everything is out of wack and I'm not exactly sure why. And sometimes I do know what's made it go out of wack but it still takes a few days to get back under control. But regardless, there are now more stretches of no problem than the other way around. And boy oh boy, before the pump, it used to SO be the other way around. Literally weeks with interrupted sleep because of highs and lows in the night. I'm now on 5 different settings throughout the night because my blood sugars fluctuate so dramatically from 10 p.m. to 8 a.m. But before the pump, who knew that? I just thought I was the worst diabetic in the world and no matter how hard I tried, I just couldn't get it right. I felt stupid and tired and afraid and demoralized.

And yet I resisted going on the pump for years. I didn't want to be hooked up to a computer because every computer I had worked with had failed at some point, so I wasn't going to trust my life to some fallible technology. "Better the evil we know" kind of thing. And I must say that the pump companies didn't do the best job making it an appealing proposition either. There was no direct interaction between me and them. I had to go through a nurse at a clinic to even see a pump or test one out. It was so very medical. It wasn't like buying a cellphone or a computer or a car. And though of course, it was a medical device and needed to function perfectly, I was going to have to live with this thing 24/7. Couldn't the process of deciding have been a little more human?

So I dilly-dallied and made excuses and I suffered on. And then my dad died and 9/11 happened and I thought, what do I have to lose? Life was suddenly very fleeting and I just leapt. And the day I went on the pump, my life changed irrevocably for the better. That day, and every day since, has been so much better than it was before. And here I sit today, realizing that I actually forget I have diabetes at times and now, that feels so normal. Isn't context funny?

after.

be gentle.

I vote for being more gentle with ourselves. Diabetes can be very harsh. There is no need to beat ourselves up when we "make a mistake". Everyone makes mistakes, but with diabetes, the mistakes can have harsher outcomes. I have spent years berating myself for not doing it perfectly until the day I finally realized that it wasn't possible. And now I try to be gentler on myself and others too. I try to remember that I have a choice about that. Diabetes is harsh, so be gentle. It helps a lot.

pure voice

Here's a terrific article written by a 10 year old boy who has type 1 diabetes. What I love most is that it demonstrates so clearly the work it takes to do diabetes well. I am so grateful for all the amazing knowledge and technology that we are armed with to live our lives well with diabetes. But it is not a cure and this article highlights that so eloquently through the voice of a wise and courageous child. His straightforward account of what he lives with every day helps shed a clearer light on what every diabetic lives with every day. And bringing more light to this often misunderstood disease is no small accomplishment! Even as I read it, having done what he does every day for so long, I'm still moved by what it takes to do this disease well. This boy's account helps me to see again, the reality of the experience of life with diabetes as I see his. And it also makes me very sad that he has to go through this at all.

Day in the life of a diabetic is lived strictly by numbers
Health - Ten-year-old Calvin Kocher has to do a lot of work keeping up with his dietary needs, but it doesn't keep him from engaging in typical activities
Saturday, May 06, 2006

CALVIN KOCHER
Editor's note: Calvin Kocher, 10, is a fifth-grader at Cooper Mountain School in Beaverton. In 2003, when he was 7, Calvin was diagnosed with Type 1 diabetes. He is a Portland ambassador for America's Walk for Diabetes, which takes place today. Here, Calvin describes a day in the life of a diabetic.

Picture yourself like this: You're very thirsty, you're always hungry, you have blurry vision, have lost weight and suddenly have urination problems. You go to the hospital, and your doctor says you're diagnosed with diabetes. Then you go to sticking yourself with a 1/4-inch-long needle 50 times a week.

That's what happened to me and more than 20 million people all over the United States of America. Are you scared now? Wait until you see our average days!

My day starts at 2 o'clock in the morning, even though I'm not awake. My dad comes in and tests the amount of sugar I have in my blood. Oops: I'm high. See, the normal range is 80 to 180. I'm 274. I have a portable IV that I carry in my pocket called a computerized insulin pump. It gives me insulin -- a hormone I need to stay alive -- constantly throughout the whole day. It's connected by an infusion set.

To give an example, insulin is like a drawbridge that connects the red blood cells to sugar wanting to get in. The insulin "drawbridge" lets the sugar in, which is then converted into energy. However, when you have diabetes, you don't produce insulin, so the sugar can't get in over the drawbridge. When your drawbridge is up, the cells are literally starving all the time because they are in need of glucose, even though your blood is thick with it. The body wants to wash out the extra sugar, and so you need to drink and go to the bathroom a lot. A lot can go wrong when that drawbridge isn't working properly, so my pump puts in insulin regularly via my infusion set. This constant input of insulin is called a basal rate.

So, back to our 2 a.m. blood check. Since my blood glucose is high, my dad gives me enough insulin to get it in range. You figure out how much insulin to inject by subtracting your goal from the high blood sugar and dividing by the patient's correction rate. My goal is 135 and my correction rate is 50. So 274 (my reading) minus 135 (my goal) equals 139 (the amount I need to come down). Then he takes the 139 and divides it by 50, which equals 2.78 units of insulin. So, he programs my insulin pump to inject that much insulin into me via my set. This extra boost of insulin is called a bolus. Everything is normal and peaceful -- until morning comes.

Today is a Saturday, which means it's a soccer game day. The game is at 11 o'clock. I wake up at about 9:30, get my contact lenses in and head downstairs for breakfast. I read the paper as I test. Oh, look, Phoenix won!

Beep-beep-beep! That's my meter. I'm 146. Perfect! I'm having two waffles (30 carbs), honey (15 carbs), butter and milk (15 carbs). So, 30+15+15 = 60 grams. My breakfast ratio is 1 unit of insulin to 10 carbs, so I bolus 5.75 units, because I'm going to be burning a lot of carbs with all the exercise at the soccer game. Then I eat, bolus and we head off to the soccer game.

As we get there, I take off my sweat suit and head off to warm up. Then, just before we take the field, I test. I'm 131. Normally, this would be perfect, but since I'm going to be exercising, I drink some Gatorade and jog onto the field.

At halftime, I test again: 187. Good! I don't do anything. But later in the half, I feel low. You know what it feels like to be low? It's like running a marathon with only water to quench your thirst. You'd feel woozy, ready to drop and ravenous, right? That's what it feels like to be low. So, my dad calls me off the field. Yikes! I'm 39! I quickly slurp my whole Gatorade, and 10 minutes later, after testing to affirm that I'm at a good level again (107), I go back on the field to savor the last five minutes of a 6-2 win.

At the end of the game, I test again. Oh, good! I'm 156, so I can eat the after-game snacks: fruit punch and a bag of chips. I will need to bolus for them. So, 30 carbs for the juice and 15 carbs for the chips is 45 carbs; on a 1:15 midday ratio, that's three units. I bolus, and then, because I was exercising, I activate a setting on my pump that, for a short time, lets me reduce the basal rate of insulin my pump puts in. This is called temporary basal rate. The basal insulin is the amount of insulin that my pump puts into my body continuously. My normal basal rate is about .8 units per hour.

In good spirits, we go to Outback Steakhouse for lunch. I order a steak, a baked potato, diet Dr Pepper and a sundae. Then, after we order, I test: 126. When the food arrives, I bolus: 60 for the potato and toppings, zero for the steak and the soda (they are carb-free) and 60 for the sundae. On a 1:18 ratio, that's 6.67 units. So I bolus, and we dig in to our food like stray dogs at a deli.

At 3 o'clock, I go outside to eat a Popsicle and grab a bag of pretzel/cheese sandwiches and relax in the hammock. This is a snack I don't have to bolus for. I look forward to it every day. Eating without testing and bolusing: It seems so normal for everyone else, but for me it's a luxury.

At dinner outside, we're having creamed corn, my mom's really good deep-fried potato slices and steak. I rack it all up. My number's a bit high -- 324 -- so maybe I shouldn't have had the Popsicle. Anyway, 324 minus 135 equals 189, and 189 divided by 45 equals 4.2 units, plus the meal. Milk's 10 carbs, potatoes are 50, creamed corn is 30, steak is zero and a Fudgesicle is 15; that makes 105, divided by my dinner ratio, 1:20, is 5.25 units plus the 4.2 units from earlier, which makes 9.45 units. It's a lot of insulin, but that's what I need. I bolus, and we eat.

Later, right before I go to bed, I test. Terrific! I'm 110, so I eat a half a banana (15 carbs) so I won't go low overnight. Then I go to bed, waiting for yet another eventful d