My new Diabetes Daily interview

When the multitalented and overwhelmingly delightful Ginger Vieira asks you to sit down with her and talk about diabetes, you clear your calendar.

Check out my interview that just went live on Diabetes Daily. It's centered on raising a child with type 1 diabetes and a few of the changes that I hope to see one day in health care, including a magic helmet that lets my wife and I go to a movie.

Diabetes Daily Interview 

A Day in the Life of a Diabetes Dad

I want to thank the Co-founder and President of Diabetes Daily David Edelmann for inviting me to contribute periodically to his wonderful site. Moreover, I want to thank him for understanding when I expressed my desire to repost on Arden's Day, in it's entirety, my work after it had run on his site. This is not the norm and generous of David to agree to. Reposting is not an attempt to "double-dip", it is being done so that all of my diabetes writing can be housed on Arden's Day for reasons of backup, cataloging and posterity. Please know that I was not paid for writing on Diabetes Daily nor did I compensate them. With that said, here is my second piece for Diabetes Daily as it ran on December 26, 2012.

What do you imagine was the most difficult aspect for me when I sat down to tell you about a ‘Day in the Life’ of a child and her father who are living with diabetes?

The most difficult part was deciding where to begin chronologically…because our day never really ends.

Since I’m not a fan of blog posts that read like log books, I’ll spare you the “7:15… my alarm goes off” style that comes to mind when you hear, ‘Day in the Life’ and instead tell you a few stories that will bring you closer to understanding a typical day as it plays out in my head, heart and home.

My daughter Arden is eight years old. She’s had type 1 diabetes since a few weeks after her second birthday. I have been a Stay-At-Home Dad for coming up on thirteen years. Before diabetes, morning were hectic, but now….

Drag a comb across my head:

I wake up each day one hour before Arden so I can make adjustments to her blood glucose if they are needed. I decided a long time ago that I would always do my best to make sure that Arden can begin each day with a steady and in range BG. I don’t have type I so I don’t know for sure, but I’ve spoken with adults who do and their descriptions of high and low BGs is heart wrenching. I can think of no worse fate then not feeling in your mind and body like yourself. So even though I know Arden’s BGs won’t be perfect throughout the day, I make sure that she doesn’t have to wake up feeling less then what she deserves.

I make adjustments to her BG around 6:30 am. That’s usually enough time to coax a high number down or a low number up with a negative temp basal. That way when she wakes I can pre-bolus for breakfast, giving her Apidra time to begin it’s fight while she runs through her daily fashion routine. I like to see at least a diagonal arrow down on Arden’s DexCom G4 before she begins to eat breakfast.

#&@#*&$ breakfast is a bitch isn’t it? I’ve taught myself how to let Arden have what she wants in the morning while mitigating her BG spike. It took a long time to find the combination that held that spike down without causing a low three hours later. Most days my system works, but you know, sometimes not so much.

I just became comfortable this year with a lower BG and descending CGM arrow as Arden steps on to her bus. I know that the food will quickly play it’s part during that ride to school, I trust the science of it now but that trust took years to build. Somewhere along that bus ride, the dance begins. Some days I lead, some days diabetes leads. Each new day is a surprise that I meet with a calm that only years of living with diabetes can lend to a person. “Here we go,” I hear those words in my head as Arden walks down our front lawn everyday. Here we go!

Arden is in third grade:

This is a big year for us in regards to diabetes management (sorry, I know some don’t like calling it management, I don’t particularly like it either but it makes the point) in school. During Arden’s first three years she would visit the nurse at every BG check, bolus, and before and after activity and food. This year is way different and very exciting. Arden carries her cell phone with her throughout the day and she and I converse, mostly through text message, making decisions about testing, food, and everything else. She has yet to visit the school nurse this year for one, not one, diabetes related issue. It’s like the coolest thing ever!

Arden’s phone has reminders set and she texts me the information that I need to help her make decisions about her diabetes management. If the reminder doesn’t get her attention, thats okay, my phone has them too. Most conversations go like this:

Arden: 127 diagonal up (we use an emoticon arrow)
Daddy: Okay, let’s look again in 20 mins.
Arden: Now it’s 150 and steady.
Daddy: Leave that, text again at next reminder.
Arden: k
Daddy: Love you.

Arden carries a small bag that holds her phone, OmniPod PDM, lance, a juice box, bit of candy and extra supplies with her throughout the day. We briefly speak before lunch to talk about her bolus and if she feels like she can finish her meal. It’s a lovely way to do things that wasn’t easy to set up on the school side, it took time and patience but I’m so happy that I handled things the way that I did. We’ve slowly built a solid relationship and no one is happier then the school that Arden is no longer missing class to visit the nurse.

If I struggle with BGs, and of course I do, the worst time is after school:

The bolus that is needed to hold down a lunch time spike is bigger then I’d like because there is no opportunity for Arden to prebolus the meal. Recess is immediately before lunch. No big deal but it does leave her CGM line drifting down around 4:30 p.m. It’s a slow decline but one that needs to be addresses with food. I can’t make basal changes to help because, as anyone with diabetes can tell you, it doesn’t happen consistently. I strongly dislike the pre dinner snack. I frequently under value the carbs or the bolus doesn’t have time to work before dinner. Something always gets askewed this time of day.

Dinner, practices, homework, shower, bed:

If only it were that easy. Dinner bolus, I am always later with that bolus then I want to be. Then there’s that small but normally stubborn post meal spike. Nothing of course makes homework more of a chore then it already is then a high BG. During the spring and summer Arden has softball, during the winter, it’s basketball. My son Cole has the same schedule and so this time of day goes by the fastest, it’s the most difficult to maintain control of and It sucks.

Dad, I’m hungry:

The bedtime snack adds three more hours to my management day, “three hours,” who am I kidding, it’s more like five. We always get a nice pre bolus in before a bedtime snack but Arden’s BGs can be difficult at this time of night. It’s a literal crap shoot. The correct amount of insulin is always either too much or not enough. On the evenings that everything actually works out as intended, I genuinely don’t know what to do.

It’s between 9 p.m. and 2 a.m. that I get the most done around the house. Laundry, dishes, a little TiVo. I’m generally exhausted by 10 pm having spent my day literally living my life and mentally walking through Arden’s, but this is not the time to rest. Diabetes keeps on chugging along. Having a CGM makes the entire exercise significantly easier. Back in the day I’d be sneaking into rooms to test at set intervals, now those test are less frequent and the new DexCom has a great signal range so often I can keep it with me, eliminating the need to run back and forth to Arden’s room.

With some luck Arden won’t need more insulin after she has gone to sleep, but I’d estimate that she does about three times a week. I don’t go to sleep until I’m sure that there is no more active insulin in her body. On good nights I hit the pillow around 1 am. Most nights it’s 2, but 3 or 4 isn’t unheard of.

I’ve taught myself to live well on five hours of sleep, I normally get those hours between 2 and 7 am. It’s all worth it when Arden wakes up in range.

I guess that is why I choose to begin this story in the morning, not because it’s the beginning to my day chronologically, my days don’t feel like they begin or end. Quite honesty, my days haven’t felt like they’ve reset since the day Arden was diagnosed.

I think that I choose the morning because her face renews me everyday when I see her open her eyes feeling like herself.

Stop saying "Cure" at Diagnosis

I want to thank the Co-founder and President of Diabetes Daily David Edelmann for inviting me to contribute periodically to his wonderful site. Moreover, I want to thank him for understanding when I expressed my desire to repost on Arden's Day, in it's entirety, my work after it had run on his site. This is not the norm and generous of David to agree to. Reposting is not an attempt to "double-dip", it is being done so that all of my diabetes writing can be housed on Arden's Day for reasons of backup, cataloging and posterity. Please know that I was not paid for writing on Diabetes Daily nor did I compensate them. With that said, here is my first piece for Diabetes Daily as it ran on November 16, 2012.

Using the Word "Cure" at Diagnosis... Must Stop!

Before we left the hospital after Arden’s diagnosis the doctor told us that she expected type I to be cured in lab mice within a few years. That breakthrough, she said, would lead researchers to find a way to cure people with type 1 diabetes. 

Every person that I’ve ever met who has type I has a similar story about doctors giving them sincere hope for a cure, and the message they receive is often followed by a time frame: “They’ll cure it in five years” or “Just hang on, a cure is close” or “Ten years, no more.” Why would medical people make you such a promise? Why would they tell us that our daughter had a life-long, incurable struggle, spend days teaching us how to keep her alive, constantly remind us that we are literally learning how to keep her alive, and then drop in the idea that it’s not going to be too long until a cure is found. What would bring a person to say something so cruel? I’ve thought about it a lot and honestly, I think they say it out of compassion. It’s a very short-sighted compassion, but never-the-less….

I personally can’t imagine having a job that required me to tell people each day that something bad, something they don’t deserve is happening to them. I wonder what we looked like when we heard the words, how much anguish did our faces reflect? How could a compassionate person not want to, even in some small way, assuage that anguish.

A few months after Arden was diagnosed I woke up one morning, sat at my computer, and read the world news. I saw the report that brought my spirits to a new high that morning, a level that I had not imagined would ever be mine to enjoy again; someone cured type I diabetes in mice. I cried. Arden was next. This was almost over. Of course it wasn’t, but armed with the words of Arden’s diagnosing doctor, I read this article with no reason not to think a human cure wasn’t mere months away. I mean, it was happening just like she said it would. However, when I began to dig into the research, I found that a few researchers had cured type I diabetes in mice, and that this news was neither new nor a concrete promise that humans were next. It certainly didn’t mean that a cure was imminent.

Since that time I’ve met people who were told “five years”…and that was twenty years ago. In fact, so much time has passed that I am now one of those people. I believe that we should all live with the hope that a cure will be found, but plan and act as if it won’t be. 

I want all of the doctors to know that whatever the reason is that you stand in front of your patients as they struggle to hold themselves up, and promise them something that you have no control or honest idea of; why ever you do that, please stop. When the day comes that they realize that your words were empty, they will feel immeasurably worse then they did and you will have done them more harm then good. You also steal from them the time that they clung to that hope, time that could have been used to really take control of their lives. Diabetes felt like something that we just had to manage until the cure because of what we were told. I would have much preferred to take it with the level of seriousness that it deserves and frankly requires from day one.

A better way to give your patients hope would be to honestly give them hope. Technologies, insulins, community, these are all bright spots that lift Arden’s life. Why didn’t you tell us about them? Why did you release us into a world that was completely foreign and frightening with only a fairy-tale to protect us? You don’t give people enough credit for their strength, you needlessly error on the side of caution when you give us details. Didn’t you see what happened when the Greatest American Hero lost that instruction book? We need all of the details, yes they will be overwhelming, but I promise you not nearly as soul crushing as the day I realized that you were lying to me about a cure. Maybe you didn’t think you were lying, but how in the world could you take that chance, and make that promise? It’s criminal.

I would have liked to have been told that researchers have been trying for decades to cure type I, and their efforts continue, but that I should not hang my hopes on a cure. It would have been nice to receive coping tools, and a complete explanation of the moving parts. An honest and heartfelt message of reassurance would have gone a much longer way then the temporary patch that you put on my grief. It did not hold, it held me back and it gave me one more chance to be sadder then I ever imagined that a person could be.

Please stop saying the word cure just to make people feel better.