thank you

Our first JDRF walk was last weekend and we had a great time, despite the wet weather. I made a video with some photos and a song that apparently infringes upon some copyright laws, so if you watch it and there is no soundtrack, just cue up your favorite song to listen to while you watch the images go by.





It was very moving to be among so many people sharing a common experience and goal.  Before the walk, they asked everyone with Type 1 Diabetes to raise their hand. Then they said to keep it raised and to look around at all the other people in the crowd with their hands raised. I think it was a really powerful moment for L. I know it was for me, anyway. Then they pointed out all the people in the crowd without their hands raised, and said that all those people were there to support them.  I totally got teary.


Another moment of public display of emotions happened earlier in the week, at L's school. There was an assembly for all of the students in kindergarten through fourth grade, the topic of which was "courage", one of the core values they emphasize at L's school.  The head of the lower school introduced L to come up and say a few words about what it is like to live with Type 1 Diabetes. L told all the kids that it wasn't contagious and that she can do all the things everyone else can, she just has to do some extra stuff to keep healthy. Then they played our fundraising video on the big screen.  All the kids seemed to get a big kick out of it, even if they've never heard of Christiane Amanpour, or Laser Cats, for that matter. As the lights came up, everyone began applauding and it got louder and louder and then I noticed all of the teachers from the lower school were standing and facing L and applauding. It was very moving and John and I were brought to tears.  As some of you know, a couple of years ago, we made the decision to move L to this new school. And over the last 8 months, we have been shown time and time again that it was the right decision for our family. Our experience in the assembly last week was just another example.

Thanks again to you all for your support over the last 8 months. <3

Lazy Pancreas

This Saturday we'll be participating in the JDRF Walk for a Cure.  We made a video that we hope informs and entertains. Infotainment!

If you had trouble deciphering the lyrics, here is a version with subtitles:

Please visit our Walk Web page if you would like to donate online or see how close we are to reaching our goal: Team Lazy Pancreas

the 'what ifs' of diabetes

I've been following several diabetes blogs over the last several months and yesterday I read one that I felt did a really great job demonstrating how frustrating the experience of carb-counting can be. The original post is by Catherine Price and can be found here and I have excerpted the pertinent bit below:

An example: we learn the basics of carb counting. One ounce of bread, for example, has roughly 15 grams of carbs. If you’re using a 1:15 insulin-to-carb ratio, then you’d take one unit of insulin for each one ounce of bread. Easy enough. 

But then . . . what if you’re eating that slice of bread in the morning instead of in the afternoon? Your reaction will be different. What if you’re eating it in the morning and you exercised vigorously the night before? Your reaction will be different. What if you’re sick? What if you’re tired? What if you have your period? What if you walked up the stairs to your office right before eating the bread — or were lazy and took the elevator instead? What if you had a lot of coffee (boosting your adrenaline) or took Sudafed (ditto) before you ate that slice of bread? What if someone cut you off on the freeway? What if you’re on vacation? What if you ate the bread with cheese melted on top? What if you’re planning on exercising after you eat it? What if that exercise is aerobic? What if it’s weight-lifting? What if the bread is high fiber? What if the carb count listed on its label is actually wrong? What if your pump set isn’t properly attached to your body, so whatever insulin you end up giving yourself doesn’t actually make it into your body? What if your tubing has an air bubble and you don’t notice it? What if you accidentally didn’t give yourself the entire bolus? What if you decide, half-way through eating the bread, that you don’t want to finish it? What if you catch a stomach bug and throw the bread up?

It’s enough to make you not want to eat the damn bread. And it brings up why I always feel so exhausted at the end of diabetes workshops: there is no perfect answer for anything with diabetes. There’s plenty of textbook information out there and we’ve all heard it before — but when it comes to applying that information to our bodies, everything gets screwed up. (To their credit, the nutritionists and diabetes educators I’ve worked with all recognize this – I would think it’s particularly frustrating from their standpoint.)  I never liked my science classes, but I did learn that if you’re doing an experiment, you need to control the variables. And if diabetes has taught me one thing, it’s that the human body is not a good place to do a controlled experiment.

So so true. For example, John and I recently did a presentation in L's class to show her classmates the effects of sugar on her body versus ours. So she and John and I all tested our glucose. Then we each ate 5 Skittles and waited 15 minutes, then tested again.  The results were not what we expected.

           Blood glucose before Skittles                            After Skittles

L                         262                                                            265
John                     92                                                              95
Me                      140                                                            127

These numbers made absolutely no sense, and didn't go along with our prepared presentation at all.  Luckily, L had the perfect explanation for her classmates: "As you can see, blood sugars can be very unpredictable!"

Amen, sister.

hans and franz

It's been two weeks since L started on insulin pump therapy. I've been meaning to update the blog with all the different changes we've been dealing with but it turns out that I've been too busy actually dealing with the changes to blog about them. Go figure!

Even though it's only been two weeks, there has been a drastic change in L's average glucose (read: her blood sugars have been much closer to her target range than they have since her diagnosis). Unfortunately, that does mean she's had many more incidents of low blood sugar, but since she is so tuned in to her body's cues, it is rare that she doesn't feel a low coming on. That means that luckily, we've been able to stay fairly on top of the lows and treat them immediately.

Things that are great about the pump:

* NO MORE LANTUS. The time of painful nightly shots is behind us.
* Meal time corrections are a cinch. L just punches a few buttons and she's good to go.
* More accurate insulin calculations. The pens could only administer half-unit corrections and could not give any injections of less than one unit. (1.0) Therefore, we were always rounding up or down and giving slightly more or less than was necessary. The pump is capable of giving corrections as small as 0.1, thus allowing for much tighter control.

Things that are not-so-great about the pump:

*Frequent Set Changes. Since we're in the beginning stages of pump therapy, we have to change the infusion set every 48 hours. That will probably only last one or two more weeks, at which time we will need to change her infusion set every 3 days. So, even though she isn't getting several injections a day, every three days she does have to have a large needle put under her skin, to insert the subcutaneous cannula.

*More Frequent Glucose Checks. The lack of Lantus (long-acting insulin) means that there is no "background" insulin in her system. Therefore, if her pump or infusion set were to malfunction in some manner (thus, not delivering the insulin correctly), the only way of knowing would be if her glucose was crazy high. So, we need to check her blood sugar every three hours (even overnight) to make sure that if her blood glucose level shoots up unexpectedly, then we can manage with injections or change her set immediately.

*Slightly restricted pool time. Last summer, L was on the swim team and between that and our membership at the swim club, she spent countless hours in the pool. Since the pump is not waterproof, she has to remove it from her body while swimming. But the insulin delivery should not be suspended for longer than an hour (due to the previously mentioned lack of "background" insulin in her system. The pump delivers a small amount of insulin every hour in place of the Lantus). So, we will just have to manage how much time she is in and out of the pool more closely than before.

That's all I can think of for now.  Despite some minor drawbacks, I'd say that the pump has made life with diabetes a lot easier to deal with, so far. I think that L has a sense of freedom that she didn't have before. But as they say, "With freedom comes great responsibility", and we're entrusting L with more responsibility than ever before. We think she's up to the challenge. :)