Hoping vs Living

I want type I diabetes to be cured. I hope in my heart that it happens in time to benefit Arden, but I do not spend time hoping for a cure. I try not to confuse hoping with hope, though it's difficult on some days not to.

This morning while I was doing maintenance on Arden's Day, I noticed that a Google user found my blog by searching the phrase, "how close is a cure for type 1 diabetes" and my heart ached for them.

If you are that person, or more likely, if you are a person who has diabetes or loves someone who has diabetes...

Please know that I have felt like that too. I've wondered in my mind, cried out loud and franticly searched the internet for the answer to the only riddle that matters. I think that it is immensely normal to hope and thoroughly human to fight for that hope to become your reality. I relate to the feeling that would lead you to a web browser. I know how difficult it was to type your query.

You are not alone. I understand. I know what it feels like to want to blur the line between hope and the grand amount of fortitude that is required from you every day - I know that you need a break. The only advice that I can lend with confidence is the advice that works for me. Don't give up. There is nothing worse than giving up. Fight. Try to be hopeful without hoping. Be strong when you are anything but. How do you do that? You don't give up. When that doesn't work... when you drift away from reality and hoping seems like a great place to escape to for a little while... Find someone who understands, let them lend you the strength that you need.

There is an entire community of diabetes advocates online that understands how you feel. Find them. They are on Twitter, FaceBook, they write blogs - find them.

Another great place to meet people is on the DSMA twitter chat that happens every Wednesday night at 9pm EST. It's run by a wonderful woman named Cherise and is a great place to meet other people just like you. Learn more about DSMA at this link.

We don't live with diabetes, diabetes lives with us. We have the power. On the days that it feels otherwise, find someone who understands because nothing is more powerful or more renewing than community.

The Not So Great but VERY Powerful Bolus

Arden's CGM vibrated on my leg. Earlier during the previews I asked Arden to give me her G4 so that I could monitor her BGs while we watched 'Oz The Great and Powerful'. The vibrations that her CGM sent through me were too intense to ignore and moments later I was greeted rudely by the message on it's small glowing screen.

Arden's CGM indicated that her BG was 94 and the number's accompanying arrow was pointing straight down. You can see on the chart below that's not good news.

From the DexCom G4 Users Guide

Prior to the movie we stopped for a light meal, Arden had a salad and one baked potato skin. I pre-bolsed for twenty carbs, ten minutes prior to the waiter arriving with our food, she ate as I expected. A little over an hour later we settled into our theater seats (about thirty minutes before the movie was scheduled to begin). Arden was holding a box of Bunch-a-Crunch, a small popcorn and she was talking about sharing a few gummy candies with her friend who was joining us. I pre-bolused for forty carbs at this time. We donned our 3-D glassed and the movie began.

95, one arrow straight down

A CGM reading of 95 doesn't phase me, and one arrow down doesn't really cause me to become alarmed anymore, "Just missed with the bolus", I thought. Then I looked at the time on the OmniPod PDM and became a bit more concerned. This was all happening only one hour into the movie, I had more than "just missed" - I significantly over estimated how much Arden was going to eat. I shook the candy box, reached into the popcorn bag and discovered that she really hadn't eaten any of the treats that we initially believed she would. I reached into the gummy candies, put five in her hand and whispered, "Eat these please, your CGM says 95, one arrow down - I think I gave you too much insulin".

Arden ate the candy quickly but three more alarms were already shaking my leg

Now her CGM was reporting a BG of 84 with one arrow down, seconds later it was 76 and then the arrows doubled. 76, two arrows down. Arden's BG was running away from me. I had already opened the juice box by the time the double arrows hit, Arden knocked it back like a shot as I tested to autenticate the numbers on her CGM. Her BG was 56 on the meter and the arrows were staring back at me as if they were awaiting an answer to the question, "What are you going to do Scott?".

I recounted the carbs in my head based on what I now knew she had eaten and then added the new carbs that she just wolfed down to that total. I was okay, I knew that the numbers matched. I told myself, "Just wait, don't over treat" but no sooner than I was able to talk myself into that response...

BEEP, BEEP, BEEP, BEEP - "LOW, two arrows down"

I could feel my adrenaline surge when the beeps angrily blared out. I started looking around to see which way out of the aisle was less blocked, thought about where the snack stands were located and considered sending our son Cole for a cup of regular Coke. Then I looked at Arden, she was sitting next to her friend who came along with us for the movie and I just didn't want her to have to rush around like the world was coming to an end in front of her pal. So I quietly slipped Arden a glucose tab (We never use glucose tabs), I asked her to chew it up quickly and swish the powder around in her mouth.

She did so dutifully, then leaned over to me and whispered in my ear, "am I going to be okay?"

Those words broke my heart and brought a tear to my eye but I answered without hesitation, "absolutely, Daddy has it all under control, go back to watching the movie", but I wasn't sure. The CGM still said "Low", though now it was reporting only one arrow down - so I tested again and this time Arden was 68. I could breath again, she was going to be fine.

I asked Arden how she felt and she responded, "A little dizzy but I'm okay". I told her that we caught the fall and that she should go back to watching the movie. Her friend never saw a thing, I did however miss the flying baboons... I heard they were fierce though, Arden told me later in the car. She knew because she never had to take her eyes off of the screen, mission accomplished.

The DexCom CGM is an indispensable tool in our day with type I diabetes. I genuinely never imagined that Arden wouldn't eat the amount of food that we bolused for. This was a complete anomaly, movie theater food always needs a strong bolus, this never happens - until it did. CGM technology is the best. Who knows how this all goes with out the Dex, maybe Arden would have gotten dizzy and told me that she didn't feel well, maybe the movie would have held her attention to the point that she didn't notice. I'm thankful that we didn't have to find out.

I gave her way too much insulin, that happens. The DexCom CGM makes that eventuality feel less scary.

Update on Wednesday, March 20, 2013 at 11:25AM by Scott Benner

My new book, "Life Is Short, Laundry Is Eternal' is available now - Amazon/Kindle - Barnes&Noble/Nook

Wrong Button

I learned a valuable lesson about diabetes blogging a few years ago. One of my readers told me that there are times when reading caregiver blogs can make her feel like a failure because so many of them only talk about what goes right... I try not to do that anymore.

The other night, for the first time in over six years, I pushed the wrong button. As you can see on the DexCom graph above, Arden was having a bit of trouble with lows after she went to bed. I was able to avoid waking her prior to midnight by shutting off her basal insulin for 30 minutes. When her BG began to fall again sometime around one in the morning, I decided to restrict her basal once more, this time for one hour.

I've looked at the menus a bunch since this happened but I still can't figure out how I made this mistake, but I certainly did. To make matters worse I didn't hear the DexCom alarm until around five in the morning. When I walked into her room and picked up the Dex, I couldn't believe what I saw, "INSULIN DELIVERY SUSPENDED". I somehow shut off Arden's insulin delivery instead of setting a temp basal. I don't know how. I felt sick when I learned what I had done.

I immediately turned her insulin back on, tested and delivered a bolus. Then set a positive temp basal to aide the situation. It took almost four hours for me to get her BG back to where we want it and Arden was two and a half hours late for school. 

I think that it's very important that we all recognize and accept that we can't be perfect all of the time and that we are going to make mistakes. This one was just my most recent. Please try not to beat yourself up too much when something like this happens (I know you will), you're doing a great job and you're doing so under difficult circumstances. I'm very proud of you, be proud of yourself.

I pushed the wrong button.

Update on Monday, March 18, 2013 at 9:43PM by Scott Benner

My new book, "Life Is Short, Laundry Is Eternal' is available now - Amazon/Kindle - Barnes&Noble/Nook 

Life Is Short: Amazon

Industrial Steel Saw

An email arrived in my inbox, it was from a guy I worked with at the job I had 13 years ago, back before I became a stay-at-home dad. He was writing to tell me that he pre-ordered my book and wished me success with my writing. His note was wonderful and it opened my eyes to an aspect of the process that I didn't give much thought to, people were going to buy my book and read it. Obviously, that is the hope, but I just imagined that my mom would buy a copy, maybe my brothers. It was difficult to consider any success beyond that.

It felt strange when I read his email. My friend went online, clicked on a few buttons and just like that, bought a book that I wrote. Everything about that thought freaked me out. I felt very responsible all of the sudden because he spent his money on something that I created. I was overwhelmed by his words, they warmed my heart.

Since that day others have ordered, I get really nice tweets, FaceBook messages and other notes from a lot of you saying how excited you are for the book to arrive. The book even charted in the US and Canada as a pre-order a number of times! It's a great feeling that I wish I could share with each of you. You know what? Maybe I can try...

I didn't exactly grow up in a hot bed of creativity. Back then I didn't feel comfortable sharing my desire to write with most of the people in my life. Only ever speaking of my dream with my friend Mike. Today as I sit here writing to you, I find myself wondering what my parents would have said if I announced that I wanted to be a writer. I think that idea would have been so far outside of the norm that they wouldn't have known what to say. When I was sixteen I began working in my Uncle's sheet metal shop, I was okay at performing the work but each day reminded me that I wasn't where I belonged. The teenage me didn't hold out much hope that he would find any success outside of that factory. I wasn't hopeless but it was very difficult to be hopeful.

A lot has happened since then...

I began writing on this blog almost six years ago and that act saved me when I was lost. Then my salvation unexpectedly become my passion. I finally found a place where I "belonged" and I was writing. If you would have asked me two years ago, I would have told you that all of this couldn't get better - but then it did.

So when you reach out to tell me that you can't wait for my book, it feels like a dream coming true - each time. I'm instantly reminded that I was once a a young man cutting steel who would drift away in his head and envision himself sitting at a keyboard, but he could never imagine a path to getting there.

You guys have saved me twice so far, once from the isolation of type I parenting and again from the disappointment of a dream not realized. I can only hope that I've helped you somehow, because I owe you all a serious debt. Thank you.

#DOCLove

I'll have Two Eggs Poached, Toast and a Scoop of Maturity

How do habits start? Sometimes it's difficult to remember how you got where you are and with each passing day it becomes harder to imagine a life that is different. That sentiment can be applied to so many aspects of of our days, but today it will help me tell a story about breakfast.

Arden was two when she was diagnosed, that was a long time ago. Those beginning years were well before I knew about the glycemic index, before I understood that all carbs weren't created equally. Today I know better but that knowledge still wasn't helping me to break Arden's cereal habit. That girl enjoys a Fruit Loop.

It's strange to some degree because Arden isn't a junk eater, doesn't like candy and other sweets. She's the kid that goes trick-or-treating to dress up and run around, not for the candy. Yet every morning she has one cup of Fruit Loops with fat free milk - and her BG's take a hit because of that choice. It's a choice that I sanctioned many years ago, and one that I regret now but all of the talking in the world wasn't getting Arden any closer to eating something different. At some point I gave up on trying to get her to change and set out to try and defeat her spikes as best as I could. I did that with a combination of pre-bolusing, temp basals and shear will. I learned how to defend against spikes and create boluses that didn't cause a low, all because of my battle with Toucan Sam. I guess that I should be grateful for that lesson, and I am. None of that however could make me feel any less like a drug dealer when I handed Arden her cereal in the morning.

But then something wonderful happened...

Arden got tired of the spikes. She began to pay attention to her health in a way that I found astonishing, I did not expect her to make this leap so soon and it all started at her Endo appointment. Arden's A1c experienced a significant decrease about six months ago. Her NP made such a great celebration of her achievement and gave Arden a huge hug as she told her how happy she was for her. As much as I believe that her encouragement got the ball rolling for us... it wasn't until Arden's next Endo appointment that she decided to take her fate into her own hands. Three month later Arden's A1c decreased again by .01, an accomplishment for sure, but it apparently didn't hold a candle to the previous decrease, at least in Arden's mind. 

As we were driving home Arden asked me how she could get her A1c to go even lower, I could see that she was feeling competitive with that number and also beginning to think about her health in a different, perhaps more mature way. I didn't want to make too big of a deal about our conversation and so I offered a few small suggestions. We spoke about being a bit more patient before eating an unscheduled snack to give a bolus more time to work, (we pre-bolus meals but small unexpected snacks not so much). I suggested that we could exchange a grain for another vegetable at dinner and then I slipped in that making different breakfast choices would definitely help. The conversation turned to her CGM graph and I explained about how the prolonged spikes from the cereal raised her A1c. It all may sound like too much as I explain it here, but this was an easy and quick conversation in our car, nothing heavy.

One week later Arden approached me about finding new options for breakfast and she hasn't had a bowl of Fruit Loops since. She is growing up, understanding more, and I am proud to be able to say that I can see her wanting good things for herself.

I don't remember thinking even once about my health when I was eight.