Thursday, October 24, 2013

The Book of Better by Chuck Eichten

I wrote recently about my daughter's diagnosis of type 1 diabetes.  I like to know things, therefore, I do lots of research. The nice part is, I'm pretty good at it.

I know there are really bad long term effects for people with diabetes, but I haven't wanted to study them. Instead, I've looked for ways to keep the short-term, really scary effects at bay. The big black cloud that looms over me daily, especially at night, is that she will have a low -- and worse than just a low, a low in her sleep.

So, there's an insulin pump with a continuous glucose monitor (CGM) that talks to the pump. It was approved by the FDA just a few weeks ago! At any time, it will tell the pump to stop administering insulin if it reads her blood sugar below a certain point. Even in her sleep.

Somehow, during my research, I discovered this pump.  It's the closest thing we have to an artificial pancreas. I'm excited. The good news is, she doesn't already have a pump. Insurance only pays every four years. The bad news is, she has to wait. She has to have diabetes and intensive insulin therapy (multiple shots every day) for six months before insurance will approve a pump.  So we will wait. 
And, in doing that research, I found Chuck Eichten. And he is helping to make this better. 

The Book of Better has a longer title. The rest is: Life with diabetes can't be perfect. Make it Better. 
The book could almost be classified as a graphic self-help health book. Or a stand-up comedy narrative. Because Chuck is funny. And he's honest. And he's had diabetes for a really long time. So he's also kind of like a mentor. To me, it feels like I gained a big brother who knows exactly what we're going through around here.

The graphics are pretty simple, but they make the book better. It's a two-color scheme, yellow and black, which works surprisingly well. I wouldn't have thought of it, but Chuck is a designer for Nike, so I'm guessing he knew it would work.

Diabetes is depicted as a monster, which is a Truth you learn when someone you love is diagnosed, and you suffer with them. I want Chuck to tell me the monster is going to be vanquished by a knight in a white lab coat, but, as I said, he is honest. His advice is to forget the cure. Help with finding a cure, yes, but for now, get on with controlling diabetes.

I need to hear that, because I'm pretty angry that Mass General has a doc working on a cure who only needs another 9 mil for the next phase of the study, and pharmaceutical companies are not coughing that up. Better for them if my girl needs their products, right?

But I'll take Chuck's advice as best I can, and move on.

What's awesome about this book is that Chuck gets it. He validates the feelings that come with this: Unfair.  Undeniable.  The Foreverness. The way we can become obsessed with food.  Right now, my daughter hates food. It's a huge pain. There is no more fun to eating or cooking. And this girl is an amazing cook. Unfair.

The Book of Better doesn't just explain diabetes, or its jargon, acronyms, and how to live with diabetes.  It's much more personal than that. It's a dialog, and it feels like a hug. It feels like care and concern and I need that. Even though it makes me cry.

There is also some history, which matters to me lot, too. For instance, "In 1921, the life expectancy of a person diagnosed with diabetes was less than 12 months. In 1922, life expectancy was more than 12 years." Finding out that insulin can control diabetes has made all the difference. Thank you Frederick Banting.

Best line I've read in a long time: I thought I had the perfect relationship with my diabetes--I did whatever it said, whenever it said to do it, and in return, well, it turns out IT WAS TRYING TO KILL ME.  

There is no "why" answer to getting diabetes. But Chuck Eichten answers a lot of other "whys" that we have. The types of insulin and how they work, and we're treated to a little personification, too.

We are fairly beaten over the head when it comes to getting an insulin pump. Chuck tells us repeatedly that it's the best treatment for insulin-dependent diabetes!  I believe you, I believe you! I very much want my daughter to have a pump. I hate that we have to wait. Even if it is only a few more months.

I can't wait to get her a pump. With a CGM that tells it to ease off the insulin if she's getting low. (Super excited that the FDA recently approved the Metronic MiniMed 530g, which will suspend insulin automatically!)

Chuck dives right in to one of our top reasons to get a pump. Skipping a meal.  Eating "later" if you're not hungry, busy, or just waiting for your really slow family to hurry up and get ready to go out to dinner. (That's us, I'm afraid.)

Sleeping in. Yep, Chuck mentions that, too. I cannot tell you how horrible I feel creeping into my daughter's room on a Saturday or Sunday at 7:30 a.m. and saying, "You have to get up now, check your blood sugar, and eat." I have never woken a sleeping baby, child, or teen, unless absolutely necessary. Late for school, hurricane coming, grandma's here, yes.  To eat? Never. You learn that when they're babies. Let 'em sleep. Not any more. Another reason we are going to love that pump. We might even name it.

Another gigantic horrible big scary: getting sick. You know she has to eat. Even if the thought of food is making her ill.  Blood sugar rises when you're sick. Insulin brings it down. If you don't eat, or can't eat, blood sugar will drop too low. Pump!

This book covers all the bases on pumps, exercise (moving), food, and eating.  There's a little glance into the future.  Mostly, it is an excellent source of information, especially for the newly diagnosed. Read it, because you know someone with diabetes, and knowing what's going on will help.

One of the best things about The Book of Better is how Chuck Eichten relates the issues which come with diabetes to everything else in your life. He makes it easy to realize that it's just another thing. Not the end of the world, and it can get better. 



2 comments:

  1. wow. What a great book review. But really, the best thing is thinking that maybe the book helped a little. I wish no one had to get the diagnosis, especially a child. But if we got it, let's make it better. Thanks Stephanie!

    - chuck eichten

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    1. The book helped much more than a little - and my daughter loves the humor! It's been excellent for her to see that she is not alone in her thinking.

      Thank you, Chuck!

      Stephanie

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