Rocking chairs

I first became aware of my new perspective when the Chilean coal miners were trapped below the surface in 2010. I was impressed by their fortitude. I was impressed by their hope. And I was impressed by their will to survive.

Then I heard that at least one of the miners was diabetic.

The D-mom in my brain started shrieking, "How is he going to properly manage his disease? Will he survive? Will he die? How did he survive the 17 days without any insulin at all? Does he carry insulin with him to work?"

I came upon this realization: I am D-Mom to the world.

Not only do I worry about my own little pumpkin, but I worry about all of the little diabetic pumpkins out there in the world. When disaster strikes, who is going to take care of them? Who is going to make sure, that in the event of an earthquake or a tsunami, that these people will get the life-giving insulin that they need?

Now barring any level of independent wealth, I am not sure I can do anything about this problem, except worry.

“Worry is like a rocking chair--it gives you something to do but it doesn't get you anywhere.”  - Anonymous

So, whenever there is an earthquake, tsunami, nuclear disaster, flood or tornado in the news, you can bet that I am rocking in my rocking chair, wondering, "Is everyone okay?" and "Who is looking out for the diabetics?"

Diabetic pumpkins on the brain...

10 minutes vs 14 hours

One of the frustrating things about parenting a teen with diabetes is that teens seem to think that they can tell diabetes what to do. (I once had a diabetic student tell me, "I am invincible!")

Of course ordering diabetes to behave a certain way will never work; but sharing this fact with my teen only makes her angry, and it certainly doesn't stop her from trying to boss diabetes around.

A couple of weeks ago, M and I decided to go to her school's production of Footloose (an on stage musical). I wanted to see it in order to be a supportive regional high school parent. I also knew that one of M's friends was in the production, and that M wanted to show her friend support.

After going to work the morning of the play, It occurred to me that M might not want to sit in her high school auditorium with her decidedly uncool mom, while her friends were all there alone, being cool, and hanging out.

So I told her that she could invite a friend.

One thing led to another. Her friend and her friend's brother came over for dinner before the four of us took off for the play. Nice kids. Good conversation. None of which was about diabetes.

As advised by several parents, we arrived very early, snagging good seats - but not together. That would be uncool.

I seated myself with another abandoned mother and enjoyed the show. M periodically waved at me, and even purchased a bottle of water for me during intermission.

After the play, we dropped off her friends, and arrived home.

I asked M to check her bg. I knew that she had had a Reese's Peanut Butter Cup, and it was 10:00 pm. I wanted to make sure she went to bed on the right track.

This is when she said, "Mom, don't freak out. I know it's going to be high."

"Well, how do you know that?"

"Well, my pump was yelling at me that it was out of insulin about halfway through the play."

I was concerned. Normally the pump gives you a "low reservoir" warning buzz before it runs out.

I expressed my concern that the pump might be malfunctioning.

M explained that she DID get the warning buzz. During dinner. Before we left the house.

While I surmised that perhaps she should have taken care of it before we left, M checked her bg.

It was 512 mg/dl.

She changed the infusion set, and bolused.

We then had a conversation, broken up into 20 minute intervals, (the frequency with which we checked her bg), in which she explained that she didn't want to make her friends wait while she changed her infusion set before we left. That it was "just annoying", and that we might have arrived late.  (489. Bolus) She thought that she probably had enough insulin to get her through the show, even though we had had pasta for dinner (476. Bolus). And yes, she had the Reese's cup even after the insulin had run out, because she didn't think it would go up this high (479. This isn't coming down as fast as it should! Injection). Now can she please go to bed? She is so tired.

Well, she can, I explain, if she wants me to wake her up every 20 minutes.

At this point, M started to cry. Through her tears, she angrily spat these words: "I just want to sleep!"

She was furious with me. Unfair, considering that I didn't get her into this mess, but hormones, diabetes, and being tired are unlikely to make a young person rational. I explained to her that I couldn't go to bed myself until her bg was in the 200 range. We needed to get it under control. (452. Bolus)

Finally, at 12:20 am, M's bg was 274. I allowed her to go to bed, with the promise that I would wake her up in two hours to make sure we were on the right track.

At 2:30am, her bg was 62. A little too low. We fed her two rolls of Smarties and checked again in 10 minutes. It was 89.

I went to bed, so that I could get up at 4:30 am to check again. Bg was 52. Feed two rolls of Smarties. Back to bed. Daddy checks bg at 5:30 am. 64. Time to get up and eat breakfast.

By noon, after 14 hours of near-constant monitoring, and very angry glares and comments by my number one teen, everything settles back into normal range.

I tried very hard not to point out to M that if she had taken 10 minutes to change her infusion set before the play, that we could all have come home and gone right to sleep, and nobody would be angry with anybody.

In fact, I didn't give her that lecture, because I was actually angry with her. Really angry. And I was afraid that my sympathy and understanding had completely left me. A calm and rational discourse was elusive, if not impossible.

What I did say was this: "NOTHING is more important to me than you being healthy. No matter how inconvenient it might seem, your HEALTH always comes first."

She nodded.

But I am somehow sure that this is not the last time I will be saying these words to her.

Sigh.

Teenagers are hard.

I HATE you! Let me go to bed NOW! I've got it under control!

Brittle

I learned a new diabetic term recently.

I am always sorry to hear that there are more diabetic terms that I have not heard before. To me, that means that there are things I don't know, might never know, or might not ever want to know about diabetes.

The term I learned is "brittle diabetic".

A brittle diabetic is one whose blood sugars are especially difficult to control.

I have often wondered about this.

It seems that, so far, M's blood sugars are usually somewhat predictable. Not always, but usually if we have a really high or really low number there is some rhyme or reason to it. And it's usually something that we can figure out, as long as M is cooperative and truthful during the figuring process.

But I had noticed that some of my students seemed to have a greater number of highs than she. That the highs seemed far more unpredictable than hers.

Of course, being a smug diabetic mom, I at first thought that perhaps my students were just not as good at managing their diabetes as my little angel.

But it does seem to me that some people just have better luck than others.

Then I read about Miranda. Miranda was a young woman who died from complications from Type 1 diabetes.

My mother made the acquaintance of Miranda's mother through work. Of course they went through that weirdly comforting "You too?" of diabetes connectedness, and then Miranda's mom shared a book that she had written about her daughter's painful journey through diabetes. In it, the book discusses the fact that Miranda was a "brittle diabetic."

Oddly, the book says that Miranda found the diagnosis liberating: she realized that her crazy bg levels were not her fault.

In life, I have often told myself that it could be worse. That someone out there has it worse than I do. It is both horrifying and comforting. It also helps me to pull myself up, realizing that there are people out there with way bigger problems who not only survive, but find joy in every day.

I know that I am not the only one who functions in this way.

Once I went swimming at the house of a friend of a friend. She and I had both, long ago, suffered second-trimester miscarriages (also known as still births). With years between our shared experience and the day of our discussion, we talked about how we felt at the time.

I said that I always felt lucky, because I had not had a child before the miscarriage, and I really didn't know what a true loss it was: something I would have surely known if I had experienced childbirth previously.

My companion looked me right in the eye and said, "Now isn't that weird. I felt lucky that at least I had had a child before, and that the loss would have been greater if I hadn't."

So, while I am saddened, and often exhausted by living with Type 1. While I fear, on some level, for my daughter's life every day, I have to count my blessings yet again.

She's not brittle.

My baby is strong.

Just keep moving. It will get better!

The rule of small numbers

When M was diagnosed, her teacher gave her a very useful gift.

It is a book entitled Dr. Bernestein's Diabetes Solution, which was written by a doctor who is, himself, a diabetic. In the book are many interesting anecdotal stories regarding growing up as a diabetic over the years. Some of the stories involve boiling syringes, using daily urine tests, and general health inconveniences. The man became a doctor in order to learn more about managing diabetes well, and having the authority to teach people to manage their diabetes well. He claims that he has patients whose myopathy, retinopathy, etc, have actually REVERSED after learning to manage their diabetes using his methods.

One item that he brought up in his book is the "rule of small numbers". I am not sure if Dr. Bernstein is the first to call it such, but it seems to make sense, and it taught me a lot.

First of all, did you know that the FDA labels need to meet a certain accuracy level? I am sure you assumed that was the case. I know I did. What I didn't know, is that nutrition labels are permitted to be off by up to 20% and still meet FDA standards.

I really don't have that big a problem with this: food is a messy business. However, for people who rely on accurate nutritional information, labels can be disappointingly inaccurate.

Diabetics who are dependent on insulin use what they call a "carb ratio" to calculate how many units of insulin to give themselves when they eat. M's current carb ratio is 7. That means that for every 7 carbs M eats, she must give herself a unit of insulin. If M gives herself a unit of insulin without eating, it generally brings her bg down about 20 points (mg/dl).

The good doctor, therefore, recommends that diabetics stick to low carb food for accuracy purposes. Since the margin of error in food is 20%, a food whose label claims that it has 10 carbs in it may actually have somewhere between 8 to 12 carbs. The amount of insulin that covers 8 to 12 carbs does not vary that much; in M's case, it's about a half unit of insulin. If she gives herself 20% too much, her bg will be about 5 mg/dl less than the ideal. If doesn't give herself enough, her bg will be about 5 mg/dl higher than ideal. 5 mg/dl off is no big deal at all.

However, if a food claims to have 60 carbs in it, then the actual number of carbs in the food can range from 48 to 72 carbs, which can make a big difference in the amount of insulin you give yourself to cover it. Let's see: If she gives herself 20% too much insulin, her bg will be 40 mg/dl lower than ideal, which brings her into dangerous territory. If she gives herself 20% less than she needs her bg will be 40 mg/dl higher than ideal.

M's target bg - the one we shoot for every day- is 120.

In reality, we are very happy if it's between 85-145. Because she is a teen, and because some foods don't have labels, or portions are over estimated, underestimated, and because of other factors like exercise or lack thereof, most days it goes over 200 at least once. Nearly every day it drops below 70 at one point.

We notice that when M eats steak and salad, and minimizes bread, her bgs are much better under control. During the holidays, when the house is full of carb-loaded sugar-filled nutritionless crap, her bgs need to be monitored much more closely.

While many low-carb foods are delicious, sometimes a kid just wants a bagel, which we then pay for in extra test-strip usage and monitoring, or, alternately, higher bgs.

The argument in the DOC has been that, while "the rule of small numbers" seems to make logical sense, it doesn't always work.

I think it is true, but brittle diabetics and diabetics with other factors such as unrelated illness, medications, etc. might not be able to rely even on something as seemingly straightforward as the rule.

Currently, we use the rule as a guideline in determining a balance in food. For example, M is smart enough to realize that eating a large Blizzard from Dairy Queen  (at a labeled 160-190 carbs, depending on flavor) or a slice of cake is not only not worth it to her, but it can also be dangerous. But she knows that if she wants a big slice of Italian bread, she best eat it with a steak and salad so that her total meal is less than 70 carbs.

Verdict: I like the rule of small numbers, but while M is off at school, with high carb quick lunches and hot lunches, sticking to the rule can be a challenge. Let's hope she makes good food choices when she is out of sight.

Here's a small number. I'm pretty sure I can cover for that.