Please Test

I need this post to accomplish two distinct and important goals. The first one will be simple. I want to thank my wife Kelly and my daughter Arden for both being so amazing. You'll see why in just a moment...

Second and maybe more importantly, I want to take this opportunity to remind everyone that while CGM technology is fantastic, it isn't foolproof. Because of that sometimes ignorable fact, we always have to test. Normally when we speak about this topic it's in response to the notion that you shouldn't bolus based on a CGM number. While bolusing without testing is something that we should never do, most of us probably have... but we shouldn't becasue CGM technology is designed to be used in addition to testing, not in place of.

Tonight while I was with my son Cole at his baseball practice (yes I know it's January) Arden's CGM alarmed and reported, "101 arrow straight down". Kelly, being the D-mom rock star that she is, tested.

Please test because sometimes, not often, but sometimes, 101 is actually 36. The DexCom CGM technology is so wonderful that it's easy to forget that it isn't perfect. I've been as guilty as the next person of leaning on it too much when I know that it isn't always spot on. It's difficult not to, especially after the sensor has been on for days and consistently reporting numbers that are so close to our tests. Next time that I'm inclined to think that way, I'm going to remember something that Arden and Kelly told me when I got home and I hope that you will too.

Kelly later said that she tested Arden because Arden said that her eyes "felt funny". Arden told me the next morning that it felt like she had been looking, too long, into a computer screen and then suddenly turned away. "My eyes were getting dark" she told me, with no inclination for how her words were breaking my heart. 

I gave her the bolus a few hours before at dinner that caused this low... and her eyes got dark.

Most moments with type I diabetes are uneventful. Our vigilance gives us the sense that we have the disease under control, but that's a foolish notion. It's only under our control until it decides that it wants to run away. When diabetes decides to run you can't stop it. Your best hope is to chase after and keep it in sight until it gets tired of running. Then you can stand next to it again, pretending that you are partners.

We're vigilant because we can't predict when diabetes will take off running, that's why we test. You aren't taking the test, it isn't you that's being judged. It's a test of diabetes, an indicator for whether diabetes is going to stand next to you and play nice or run away.

Please test.

An Unexpected Conversation

Arden didn't want to see 'The Hobbit: An Unexpected Journey' but the rest of us did. She told us that she would come anyway and, "take a nap if I get bored". It wasn't long after she snacked on some popcorn and chips that Arden shifted herself around in her seat, raised the arm rest and laid her head on Kelly's leg. Arden probably slept through the last ninety minutes of the movie, her BG from the snacking didn't take the same break.

I had Arden's DexCom receiver under my leg and was watching it for a rise in her BG. I rarely seem to cover those movie snacks in a way that completely holds down a spike. I probably checked the CGM once every twenty minutes, setting one temp basal over the first hour.

About thirty minutes before the movie ended Arden's CGM shook, she was going to need another bolus. Before I bolused I wanted to go back through the recent insulin delivery history so that I could make a good decision, I was trying to avoid testing Arden in the theater while she was sleeping. I had a pretty good feel for what I wanted to do but felt like it was important to review the last two hours before I pushed any buttons. I must have gotten engrossed in the data because I unknowingly brought the PDM up to my face to read the numbers. When I did the barrier that my seat and legs were providing against the light was lost, the PDM screen was now visible to others in the theater.

Before I could realize what I had done, an angry female voice emanating from my left spoke, "put that phone away, it's rude".

The instant that her words reached my brain I was enraged. My chest felt as if my heart had turned to molten lava and my mind was begging me to release the mixture and drown her with it. I'm embarrassed to tell you how insanely angry I was. My heart rated doubled, I could feel the adrenaline coursing through me. I instantly had a genuine desire to eviscerate the person that spoke in the dark. I wanted to rip her open and pour the hot pain that was boiling in my chest into hers... so that she would know how terribly misguided her words were.

Except that she was right...

I was that guy holding a bright light in a pitch black movie theater. I was interrupting the people around me. The woman who spoke made a completely reasonable assumption that I was holding my cell phone, I probably would have done the same thing. I knew that intellectually, but I still wanted to scream at her. I had to use breathing exercises to let the anger out of my chest. It took me a long few minutes to ride out the adrenaline. I kept thinking about her words as I waited for my primal response to dissipate, thinking of everything that I wanted to scream at her. I thought about it over and over until I could absorb and believe the truth. I was so blinded by anger and my desiree to defend Arden that I was unable to give my thoughts enough clout to overcome my rage. Eventually, my better judgement won out and I began to allow the truth to rule this moment, I was being unreasonable. When I was finally able to relieve myself of the rage that filled me, I was flooded with the notion that, "If she only knew, her reaction would be so very different... if she just understood that Arden has diabetes".

When the movie ended I checked with my son to make sure that the woman sitting two seats from him was the one who spoke. He told me that it was, I immediately stood up and approached her. "Excuse me, can I just have a few seconds of your time", I said. She wasn't sure what to make of my request and so I sat in the empty seat between her and Cole and began to speak before she could answer. "It wasn't a cell phone... it was my daughter's insulin pump, she has type I diabetes".

She calmly replied with an air of superiority, "You still should have taken it outside"...

Well, that didn't sit well with me as perhaps you can imagine. I politely but sternly asked her if I should have taken my daughter outside to give her the insulin that keeps her alive. My displeasure was on display.

To her credit she rethought her statement and recanted it, making up an only half-believable excuse about not understanding what I initially said. If I'm being honest, she was on her guard as I approached and I understood that her first words were defensive.

I explained again, apologized for not doing a better job of quelling the light and thought that, with that, we would part ways. Except that she seemed hell bent on making her point about rude people and their cell phones. It seemed that she was beginning to feel badly about our misunderstanding and wanted to legitimize her response. She began to defend her self but I cut her off before she could get on her soap box, and said this...

"If I can just have thirty more seconds of your time. There is a piece of writing that I love, it's a speech called 'This Is Water', the author makes a number of points in the text, one of them is this. We all see people everyday who drive like assholes. Chances are that most of them are actually assholes, but one of them must have a good reason for speeding and switching lanes too much, one of them must have an emergency that we could all understand. The author makes the point that you can spend your life assuming that those people are assholes, or you can make the humane choice to believe that they have a really good reason for driving that way. I choose to think the latter and I hope that this experience helps you to make the same decision next time something like this happens to you."

Now I must tell all of you that I am not normally the guy that lends strangers advice that they don't want and didn't ask for. I was driven in this moment by the desire to not just defend Arden but each and every one of you. Maybe I was out of line, I think that I was, but people living with diabetes deserve a little bit of... of what? We deserve a little extra compassion. I know that because I live this life, the same life that you live. As I was speaking to her my own words reminded me that everyone has diabetes sometimes, that we all need a little extra compassion once and a while. That acting with concern instead of contempt is one of the most basic and loving human gifts. Too often we respond to others pain with judgement, and if my experience on this night is any indication, we do so because of the judgment that we perceive has been previously levied upon us.

I apologized to the woman again for impugning her, I insulted her by insinuating that she saw the drivers as assholes. Perhaps she doesn't, maybe she's just been to one too many movies where someone pulled out their phone. Either way, I said my peace, defended my daughter and tried to be an advocate for, not just you, but for everyone that could use a break once and a while. Maybe I thought, maybe next time she'll find the strength to hold her boiling lava inside and approach her next issue as I did. Maybe I started a positive wave that will carry into the future. I hoped that my actions would be the start of more human kindness - but maybe she just thought I was an asshole.

When we got to the car Kelly asked me why I was talking to the people next to Cole. I told her this story and then I told my children this. "When I was young I would have yelled at that woman, I would have embarrassed her the way that she embarrassed me, I would have mocked her and verbally punished her for daring to speak up for herself. I grew up just outside of Philadelphia and I wasn't raised to take shit from people, even if I deserved it... I'm glad that I grew up. I hope that you can control yourself when this happens to you one day, and it will." I told them how difficult that it was for me to maintain my composure and I did my best to describe how angry and defensive of Arden I felt when she spoke. I really hoped that my kids got something more out of this evening then popcorn and a movie (and a nap). I'm sharing my experience with you for the exact same reason.

The woman thanked me for taking the time to explain, we shook hands and wished each other a Happy New Year. I think that she was glad that I spoke to her, I at least hope that she was... I know that I was.

Everyone needs a break sometimes... Do your best to remind yourself of that in 2013. It's not always true that the ignorance you face has understandable beginnings, but it does you far more personal damage to believe the worst in people and the assumption gets us no where, it actually holds us back. When you give others the benefit of the doubt, you may be starting a kindness that will one day find it's way back to you or another person whose life is not that much different from ours.

Happy New Year!

All my best, Scott

I'm the Cornerback

I found myself yesterday explaining to a friend some things about diabetes. During the conversation I mentioned that Arden's BGs have been all over the place for the last few days. They were high yesterday morning and I couldn't get them to budge. Then, as if someone flipped a switch, they were suddenly perfect for the remainder of the day. Early the next morning after some late night Christmas wrapping, I was heading to bed and I checked on Arden for what I thought would be one last time. Arden's CGM told me that her BG had begun to fall fifteen minutes before I arrived in her room. I tried to stop it with a temp basal but I was concerned that I was too late, so I settled in and waited to see where the bottom of this drop was going to be. Maybe, I hoped, maybe I won't have to wake her but I knew in the back of my mind that I was going to be chasing this BG all night.

The next day as I was explaining to my friend that managing diabetes is a lot like playing cornerback in the NFL, I realized that I was correct in more then a just a few ways. When you play football as a defensive player there is one truth, no matter what you do, or how much you practice, the guy you are defending is always one step ahead. In this example, the wide receiver (diabetes) has a head start. You may be just as fast and even more nimble but he always has the unfair advantage of knowing the route he plans to run while you are left to try and keep up. There are two ways to cover a wide receiver, you can be smart or you can be flashy. A smart corner keeps up with his opponent, always staying within reach. He reads tells in the receiver's body language, looks for clues in the alignment of the offense and then he let's his skill and talent guide him to a place on the field were the final act of their battle takes place. It's in that spot where, with luck, he'll be able to react in time to stop the receiver from catching the ball. 

All the receiver wants in the world is to get away from his defender so he can make a catch, score and beat the defender. The cornerback, being a defensively minded participant in the game, he just wants to stop the receiver from advancing more then anything else. When a corner fails at his job pundits says he was burned, because that is exactly what it feels like. It's a terrible feeling to make your move and miss the ball. Your momentum takes your body out of position, you are no longer in a place to effect the play. You give chase, but you know just as everyone else looking on does, that you'll never catch back up to the man with the ball. The man you were charged with stopping. I've stood on a football field and watched my man, the guy I know I can beat, run away. He's outsmarted me, out performed me, he's beaten me. I know it, everyone else knows it, but what hurts the most is that he knows.

That's were the similarities between football and diabetes stop. Diabetes doesn't know it just beat me, but I still feel burned. Eventually I gave up that night and woke Arden so she could drink some juice. Then I chased her BG until the early hours of the morning.

Some times when I'm able to keep up with diabetes and my skills take over, I make an awesome play on the ball. I've knocked a few passes, that were going for touchdowns, out of the air. Once and a while, when unleash my flashy, I pick one off and take it back for six.

Each morning when Arden wakes up, I'm renewed by the look on her face and ready to run with diabetes again. We stand across from one another, look deep into each other's souls and wait in the intense silence for the ball to be snapped. I hope that one day, someone will walk on the field, take their ball and go home. Until then, I scrap with the guy that lines up across from me, doesn't matter what number is on his chest - 56, 347, doesn't matter. I know what he wants, but I have a surprise for my opponent... I want it more.

Where the Internet Meets my Driveway

I was writing at my desk when Cole came into the house from outside. It was an unusually balmy December day and he was taking advantage of the warm air.

"Dad, there is a lady in the driveway that wants to talk to you"

Cole didn't recognize the woman and either did I as I walked toward her. She extended her hand and within a few words I began to understand why she was here. She fumbled a bit with her words, seeming uncomfortable that she had just shown up at my house without notice.

"I have a friend... she told me about this guy on your street... he has a daughter with type I, are you him?"

Then she gestured to her car, "my daughter was just diagnosed and I live around the corner from here".

We talked for a half of an hour about varying diabetes questions, I tried my best to give her some information, the stuff that I wish I had knowledge of during our first month. We exchanged numbers and promised to let the girls meet soon. I was so proud of her for reaching out in the way that she did, I found myself wishing that I had that courage when Arden was first diagnosed.

I told her about all of you and asked her what she knew of social media. It was interesting to hear her first month concerns in person, I could imagine myself asking the same questions so many years ago. I expressed to her daughter that even though this "all sucks" now it will get much better far sooner then she can imagine.

This random moment helped to reinforce why I write about diabetes CareGiving. I could see myself in this mother's face. I knew everything that she was feeling, I understood all of her fears. We are the same person now, our only difference is that I have the comfort of time and experience and the perspective that comes with those gifts. I hope that something I said or the relaxed feeling about type I that I tried to convey, helped to relieve her fear and anxiety.

The DOC in real life was just as amazing as it is online!

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.