Three Days without DexCom

I felt quite like Linus the other day, when time took our diabetes security blanket away.

It was meant to be, the DexCom transmitter is designed with an internal battery that is warranted to last for six months but when our transmitter turned a year old a few weeks ago, I thought maybe we had the one that would never lose it's charge. 

Then, of course, it did.

Only a few days past it's birthday our G4 transmitter let out a death knell in the form of the image that you see above. "Low Battery: Order New Transmitter" - and so I did. Today's blog post isn't about a fight with an insurance company or a medical supply firm filled with inept employees. All of that actually went smooth as silk. I made the call and the new transmitter showed up three days later. But those days taught me a lesson.

The lesson? I lean so hard on that continuous glucose monitor that I was initially lost without it. Now, today's blog post isn't about how great diabetes technology can be, and I'm not going to sing the praises of DexCom (Though I could) - Today is about shining a light on the true meaning of what the CGM brings into a life lived with type I diabetes. 

Continuous Glucose Monitoring brings a sense of calm and peace while it removes uncertainty and blindness.

I can see the insulin go in but where does it go, what will it do, when will it do it and how long will it be before it has completed it's task? I can see the food go in, but how, when and with what intensity will it impact Arden's blood glucose level?

I stand in a dark room, it's walls built with uncertain nervousness, waiting for the room to catch fire. I think that's what injecting insulin felt like before we had a CGM. It felt like the five seconds before the knife wielding lunatic jumps from the shadows in your favorite horror movie. But it feels like that all day, at least it did in the past and it did again for these three days, well, it tried to feel like that but I was able to stop it with the knowledge that I've gained living with a CGM in our life.

My first reaction when the battery in Arden's transmitter failed the day after it's first warning that it would, was fear. I thought about how positively Arden's A1c was effected when we added glucose monitoring to our life and worried that our success was solely based on the information that our devices report. I was actually concerned that I wouldn't remember how to handle things without the technology that I've rightfully grown to trust. The first night I gave in to the pressure and I stayed up half the night testing. Do you know what those tests showed me? They showed that even though diabetes is unpredictable, I have a pretty good feeling for when it's going to be unpredictable. I know when a miscalculated bolus will become an issue, and low BGs aren't as elusive as they felt before I was able to watch twenty-four hours of blood sugars on the DexCom screen. There's no doubt that I can't predict everything and I certainly don't know when an unexpected change in Arden's BG will happen, but I can guess with some reasonable certainty. My educated guesses are now more educated than they once were, and I think that there are times when I lean too hard on the information coming from the Dex. I think that sometimes I know what the correct action to take is, and I use the DexCom data to convince me that I'm correct. 

So I found my bravery and went back to managing Arden's diabetes the way I did in the past... By closing my eyes, trusting myself and hoping for the best (And I tested more often).

I'll tell you what though, I put all that high-mindedness aside the second that the FedEx driver handed me the package that contained Arden's new transmitter. I tore the box open, grabbed the transmitter and drove directly to her school to pop it in. I trust myself, I do, but this diabetes dance is much easier when you have someone or something to lean on.

Update

on 2013-11-20 18:33 by Scott Benner

There is still time - enter to win our diabetes circle shoe laces giveaway!

Bermuda Triangle

Last week around eleven in the morning, Arden texted from school to say that it was lunch time and she couldn't get any of her test strips to work. "I've tried five and they've all errored", her text read. 

No problem I thought, "What's your CGM say?"

"???", Arden replied.

We found that Arden could still deliver insulin with her OmniPod PDM so we bolused for lunch in the blind and I told Arden that I was leaving to bring her a backup meter. On the way to the school I spoke with OmniPod customer service (Picked up on the first ring!) and they suggested that I try a new vial of test strips. The CSR finished the conversation by saying that if the test strips weren't the issue, they would happily overnight us a new PDM.

I met Arden in the office a few moments later and we tested successfully with the new strips. The CGM sensor however, was toast, so we changed our testing strategy slightly and synched our reminder alarms. Arden went back to lunch and we managed the remaining four hours of the day the ole fashion way... with a meter.

In all of the years that Arden has had diabetes, this is the first time we've experienced a total and simultaneous loss of the ability to quantify her BG. Even though the timing couldn't have been worse, I never felt frazzled and I can only attribute that calm to having so much experience. I'm quite certain that this moment would have given me an aneurysm five years ago. 

Before I say this next bit, I want to remind you that I am not a medical professional and that the things that I share on Arden's Day are never meant as advice. There is a disclaimer at the bottom of the page if you'd like to read it. I gave Arden her lunchtime insulin in this situation without testing or the benefit of a CGM based on a number of factors. Time of day as it relates to her last bolus, we spoke about how she felt at length, based on historical data - Arden's BGs at this time of day over the week, the fact that she was going to immediately begin eating and I would be there with a new meter and strips in less than 10 minutes. I would never bolus without knowing the state of her BG in a normal situation.

We swapped Arden's DexCom G4 sensor (It had done more than its fair share... if you get my drift) when she arrived home and we were back on the path of technology based diabetes care, by dinner time. The PDM/meter has not given us a problem since, so I'm chalking this all up to an anomaly caused by faulty strips - but who knows.

Arden's Day is Six Years Old

Let's celebrate... It's the sixth anniversary of Arden's Day!

At exactly 3 AM on August 16, 2007, I posted my first blog entry on the Internet and "Decided to Share" began my online life as a type I diabetes advocate. I had no idea if anyone would ever read my little blog and there were times that I seriously considered closing Arden's Day because I doubted that I was adding a needed voice to the community. Well, it's six years later and I couldn't be happier that I made the decision to keep blogging, because so much has happened since that overwhelmed and exhausted guy first said these words...

I can’t sleep... Haven’t really been able to for about a year now.  On August 22nd Arden will be a Type I diabetic for one year.  I’m going to try and relay to all of you what Arden’s disease is, how it effects her and how it effects our family.  My goal is to give you a glimpse into our life so that you can better understand Type I diabetes... My hope is that the understanding will result in your advocacy.

Starting now I’ll be updating this site as much as is needed to bring you into all of this as completely as possible.  I’ll be taking pictures and video as much as possible.  I think diabetes is one of those things you need to feel to understand, an explanation just doesn’t do it justice.  It’s a much more visceral experience then you may think. That picture (above) is from just now (3:00 am), Arden just called me from her bed.  She wanted to lay down with us.  I checked her Blood Glucose (from here on out known as BG) and it was good.  Well not really good, high actually about 120 - 150 points higher then a non-diabetics would be at 3 AM but good for our purposes. Don’t worry it’ll all start making sense to you soon...  Please use the “Subscribe” button on the ‘Daddy’s Blog’ page to stay up-to-the-minute.  I really think that being updated every-time something happens will help bring you into the process. Please share this link with any and everyone you know.  Off to get some sleep...

Since that day, I've spoken to Congressmen and Senators, raised funds for the JDRF, written a book and met the most wonderful people. I could probably make a list as long as my arm of amazing things that have happened since I began to blog, but if I had to pick a favorite... it would be easy to choose. I am still, to this day, amazed at how much sharing our story helps others. Honestly, when I began six years ago, I never expected that. Moreover, I'm simply stunned by how powerfully you all return the love. That dynamic is, without a doubt, the most rewarding part of all of this. The relationship that we all have is one of the most uniquely human experiences that I've ever been a part of. Starting Arden's Day in 2007 was, without exaggeration, a life changing moment for me and that feels celebration worthy. Plus, six years is quite an accomplishment for a blog and I'm genuinely very proud to be able to lay claim to six years of diabetes blogging.

You are reading the 568th post that I've written for Arden's Day and the wonderful feeling that comes from sharing with you has not diminished one bit since 2007. It's my pleasure to be able to say that I am, in some small way, a part of something as wonderful as the diabetes online community.

You must be wondering why I am posting about an anniversary eight days before it happens. Easy answer... So you can be ready for what's happening next week. Stuff like...

Lauren's Hope is generously giving away some medical ID swagerrificness in celebration of Arden's Day's sixth anniversary!

Spry Publishing has donated a few copies of my book, Life Is Short, Laundry Is Eternal that I'll be signing and giving away. 

I'll be asking for your thoughts on what your JDRF Walk means to you and your family. A few days later, Arden will randomly select one of your comments and my family will make a $50 donation to your walk efforts.

I'll highlight one of my favorite posts from the past every day next week and reflect on them from today's perspective.

...and an announcement that includes giving away multiple copies of the newest Coco book from the Lilly/Disney collaboration, 'Coco's First Sleepover'.

I'm excited for Monday to arrive and hope that you are too! In the meantime, enjoy your weekend and good luck getting that Flintstones song out of your head! 

Video: Diabetes Hands Foundation Interview

It was my very sincere honor to be asked by the Diabetes Hands Foundation to participate in a live interview with their very own Emily Coles... We spoke about many type I diabetes issues, I made some bad jokes, Arden even made a couple of cameo appearances... I hope that you have time to check it out.

Karma Ebbs, Karma Flows

As you read keep this thought in the back of your mind... "The story is about a juice box that saved the day"

This story begins weeks ago on a day that was one hundred and fifty percent unlike any day that I've ever experienced. I woke up early that morning to travel to New York City to be part of a panel of stay-at-home dads for an episode of the Katie Couric Show. A shiny black car arrived early that morning to transport me for a few hours to a world that I'd never before seen. Green rooms, backstage areas, even people styling my hair and applying makeup to my face - it was strange, fun and more than a bit exciting. When my time on television was over, I climbed back into the shiny chariot only to find an email from the National Basketball Association that featured a story about me. I read the article (written by the DOC's own Moira McCarthy) and then closed my eyes for a few minutes because I was already exhausted from the day. I needed to catch a bit of sleep on the ride home because this crazy day wasn't nearly over, I still had to sign books at a Barnes and Noble in Philadelphia that evening, like I said before... a day like no other.

So to recap the morning... Fancy black cars, Katie Couric, I met Steve Schirripa from the 'Sopranos' in the makeup room, joking in front a a live studio audience and a my name on an NBA email blast that landed in a half of a million inboxes across the country. And in a few hours I was going to get to sit in a book store and sign my book. All extraordinary stuff that no one imagines will ever happen to them, and it was happening to me all on the same day.

The book signing went great, one of the real highlights was when I met a gentleman who reads Arden's Day and his son. The best part of the night? Arden came with me to the signing. Perhaps this book writing thing will lead to more and maybe it won't, but for a few hours that night my little girl got to sit next to her dad as he signed his name in a book he wrote. You don't get too many opportunities in life to be a hero to your kids, this day was special. 

As Arden and I drove home that night through a teeming rain storm, we talked about the day. She asked me about what it was like to tape a TV show and we anxiously spoke about what the vacation that we were leaving for in two days would be like. It was as we were talking about our impending trip that I saw a small group of children standing on the side of the road. I instantly wondered why they were outside in the rain and it was so late at night. Then I got my answer out of the corner of my eye when I witnessed one of the kids reaching back as if they were going to throw something. I remember thinking, "Aw fu$k...". 

Bang, pop, thump, thump, bang, bang, crash...

The right side of my car was being pelted by hooligans, malcontents I tell ya... We were under attack. I stood on the side of the road staring through the rain hoping that I could see one of the little bastards, but they were gone. Arden was frightened, I was angry and the rain wasn't giving up, so I got back into the car and we went home. I stood in the rain washing my car and wondering what the light of the next day would reveal. When I woke the next day I was greeted by multiple and significant points of damage. I informed our insurance company and we left for our vacation.

Fast forward to yesterday...

This morning the insurance adjuster came to our house to assess the damage. A few minutes before the adjuster was finished, Arden wandered outside with that "just woke up" look on her face to find out what was happening. As she was fresh from her bedroom, Arden had her bag full of D-Tech with her. OmniPod PDM, DexCom receiver, MultiClix and a juice box all in a small leather purse. She set the bag down on a box in our garage and walked over to me to find out what was going on. Arden and I decided to pass the time as we waited for the gentleman's assessment by cleaning up the garage and taking the recycling down to the corner. 

Soon enough the adjuster finished and I asked Arden to move out of the way so I could put my car back into the garage, but she wanted to ride with me for the ten foot trip and so she climbed into the passenger side instead.

Moments before I was joking with the insurance guy about the day that my car was attacked. I told him that I must have used up all of my allotted good karma when I found myself on TV and at a book signing all on the same day. He laughed and as I sat down in my car to put it back into the garage, I quipped through the window, "I guess the universe was rebalancing itself when those kids pelted us". Then Arden and I drove forward...

POP!

I jammed on the brakes and my stomach dropped as I remembered leaving Arden's bag on the floor when we took the recycling to the street. I backed up slowly and Arden jumped out to see what made the loud pop but I already knew it was her bag. I felt sick when I realized that I drove over her PDM and DexCom receiver. I thought I was going to throw up... But it turns out that the pelting my car took all those weeks before must have been an overcorrection, and it seems that the universe owed my a credit. 

It was a juice box that exploded and acted as a warning signal to stop. Not only that but the juice was in a separate compartment so none of it got on the electronics. I was about to drive right over Arden's PDM, DexCom, MultiClix, and her bag but that little juice box happened to be on one end of the small bag while all of her gadgets were on the other. Thankfully, the juice was closer to the tire than the electronics and they remained untouched by my car's tire. 

Karma ebbs, Karma flows...

Arden pulled her gadgets from the bag and placed them onto the seat that she just vacated and said, "Well... this is the first time that I don't hate those juice boxes". ––– I thought to myself, "Me too".