I feel like a Jerk...

I've started this post and deleted it maybe a dozen times this year, always afraid that I'll come off like I'm complaining, ungrateful, greedy or worse - a jerk. Today, I'm not going to delete it because something I recently read has given me the nerve to ask.

So, if you'll be kind enough to indulge my brooding artistic side, I have a question for all of you about my first world problem that I can't shake caring about. It's a question that I'm embarrassed to need the answer to and I'm almost certain that there is no way for me to say what I'm about to..... See, right now I'm having the strongest desire to delete this, I hate that I want to ask, it makes me feel so... I can't put it into words.

Okay. When I began writing Arden's Day six years ago I didn't really know about blogs. There was no DOC that I was aware of and my sharing was mostly a catharsis, as I didn't expect anyone to see it. I only ever shared the link (Which wasn't ArdensDay.com) with close friends and family. This blog acted as a writing class for me, it helped me to express feelings that I would have otherwise kept locked up and I still furrow my brow and wonder how this all happened when I receive a monthly report of the site's traffic. To say that I didn't expect any of this, is an understatement of epic proportions.

I did however always want to tell stories, I just never thought they would be real stories. I wanted to write fiction, but this form of expression seems to have found me and I know now that I'm meant to share from my heart, not my imagination. Fast forward a few hundred blog entries and now the DOC exists and bloggers are getting noticed, some even get asked to write books. Other's good fortune presented me with an opportunity to speak directly with a publisher, who only knows me as a diabetes blogger. That woman wasn't talking to me because she wanted me to write, she called me because I forgot to include a bio line for a sidebar that I contributed to a book she was publishing. This was the chanciest meeting of chance meetings, it never should have happened, I never should have been on the phone with this person - but I was, and so I acted. I idiotically pitched my idea for a parenting memoir to a publisher of medical books, because why not? Because, when was I ever going to get this chance again? 

Writing the book took forever. Handing it in was one of the most stressful things that I've ever done. I feared that no one would like it, that it wouldn't pass muster, that I was about to embarrass myself in a way that I couldn't bounce back from - but the risk seemed worth it, I wanted to tell a story. Writing was personally difficult, handing the book in was an exercise in humility but when the book was well-received... I couldn't believe it. I doubted myself as a writer even as glowing reviews were filling my inbox.

My first published work has been on shelves for almost eight months, it's won a writing award and I still, I doubt myself everyday when I write. It can be an email, a blog post, social media message, doesn't matter - I doubt every word. That doubt has stopped me from asking you the question that I've wanted to ask for almost a year. Then I read this recent review of my book...

"I've just spent the last 6 hours or so reading what I consider to be one of the best non-fiction books ever written. Once I opened it up and began reading, I couldn't put it down until I reached the end - even while I was cooking my dinner I had it in my hand. What an absolute pleasure to read. I don’t think I can put into words just how much I enjoyed this book."

Those wonderful words that the reader used empowered me, though not for the reason you may imagine. I didn't read it and suddenly stop doubting my writing, I may always do that. I read her words, and they desperately made me desire for other people to feel the way that she did. Her reaction is why I wanted to write the book, it's why I wrote as a child, and why I write this blog. I've always wanted others to see life through my eyes, if only for a moment. 

I elude to my question a lot. I try to find ways to lead you, images, tweets, drawing attention to reviews, but I've never been able to just ask... until now. Because, why not? That attitude won me the chance to write a book and I'm hoping that it will give me a chance to help more people to find it. So here's my question, and please know that I ask it with great respect and a sincere amount of humility.

Would you please read my book?

Starting this Monday, I'm going to post daily, a different review of my book, 'Life Is Short, Laundry Is Eternal' on my social media pages. My publisher tells me that people don't buy parenting themed books from October to January (Talk about market research, huh?) but I want to try and change that line of thinking. In honesty, I want other people to feel my story because I think it's all of our stories. Even more honestly, I want to write again and help other people to access those emotions. In the world of publishing, there is only one thing that will get me to that place - If you read the Life Is Short and enjoyed it, please tell a friend, give it as a holiday gift and leave a review online at Amazon, Barnes & Noble, iTunes. If you haven't read it, please pick a copy and give it it try.

Well, I feel insanely uneasy about posting this but... dammit she read the book while she was making dinner.

I hope that you all have a wonderful Thanksgiving, I'll be taking a break from blogging next week so I can prep for the holiday and do some non-diabetes related writing- but I'll be back soon! Thank you all so much for reading Arden's Day, it's a the pleasure of a lifetime to speak with you in this intimate setting.

If you have time, can I ask you to answer just a handful of fast question so that I can understand better how the book, is or isn't finding it's way in the world. Anonymously of course. 

Best,

Scott

When things go wrong, they go wrong.

Yesterday was a busy day around here. Arden was leaving straight from school to attend a gathering of her friends at one of their homes. I also had a speaking gig at a local Barnes & Noble in the early evening. Remote management of Arden's BG extended past the school day and into the play date as I prepared for the event.

Everything was going great even though the food choices at the get-together were carb heavy, pizza, brownies and the like. Arden's BG was steady at 145 for most of the afternoon, we had seemingly defeated the pizza and the brownie didn't seem to be gaining any ground on the last bolus. Good stuff.

Arden arrived home just a few minutes before we had to leave for the bookstore (Kelly is away for work, so the kids came along), her BG was still holding steady so we jumped into my car and headed out. It was on that short ride that things began to go wrong. First Arden's CGM indicated that her BG was rising slowly so we bolused, it seemed strange because she was now over ninety minutes past the the time that she ate the brownie and there was no spike after she ate it. The pizza by this time had been ingested over four hours prior. I thought it (BG rise) could be the pizza but more likely we were fighting with the combo of pizza and brownies. Still the rise was slow and I had no concern that the bolus wouldn't handle it.

Forty-five minutes into the book talk Arden's CGM was going nuts. Her BG was now rising quickly and the last bolus didn't look like it was going to hold. She tested and we were very aggressive with the next dose, very aggressive. So there we were in a Barnes & Noble, I'm chit chatting with the crowd about Life Is Short, can't leave for an hour and trying to decide if Arden's blood sugar rise is food related or if her pump site suddenly went bad... I didn't know and only time was going to tell. A short while later we boulsed again because subsequent testing indicated that the last bolus only served to stop the rise in her BG and wasn't enough to bring it down. By the time we got home her BG had fallen just enough to create more confusion. Do you know what I mean? I was in that spot where it seemed like everything was going to be alright if I just gave things a little more time.

But you know that wasn't the case.

Arden climbed into bed with me to watch television (Far after her bedtime), she was drinking water, I was setting increased temp basal rates and staring at the DexCom screen - the evening had devolved into a good ole' fashion cluster fuck.

I gave up after one in the morning and changed her pod. I felt comfortable that her BG was in a safe place for me to sleep a little after four thirty in the morning. Good news is, my TiVo is empty now...

Bad news? I never heard my alarm and we didn't wake up until eight in the morning, school begins at five after. I woke the children and told them to get ready, "Don't rush, I just want you to arrive in time for second period". Cole jumped into the shower, Arden went to her room to get dressed - CGMnow was 80.

I brushed my teeth, got Cole to the first floor and called for Arden, she didn't answer, I called again... nothing. When I tried the knob on her bedroom door and it was locked, I knocked, no answer. So I raised my voice, "Arden!, Arden, open the door".

"I can't, I'm on my bed and I can't get up - I'm low".

When I unlocked the door to Arden's room she was sitting on her bed, her face lacked muscle tone and she looked pale. I immediately handed her a juice and asked why she didn't call me or drink a juice. She responded, "I can't move, I have a bad headache and I'm dizzy". We treated, tested and she ate a piece of toast. When her BG finally came to a balance I asked her to get ready for school but she said that she felt like she didn't sleep at all last night, she thought she was getting sick. I explained that I've heard from many PWD that they experience a hangover like sensation after a significant overnight low and that it comes with a feeling that you didn't sleep. Then she said something that dropped my heart into my stomach.

"That never happens to me..."

I had to explain that each day with diabetes wasn't going to be the same and that different issues are going to arise as she gets older. I think she was sad to hear that, but too out of it to care. It's almost noon and Arden is still sleeping in her bed. Her BG is all good now but I'm a little worse for wear. I'm sharing this today because I promised to try and be even more open during Diabetes Awareness Month. But also because I was reminded recently that my blog reaches a lot of parents and I never want any of you to think that the shitty stuff that sometimes happens to you... isn't happening to us. It is, it's happening to all of us.

You are not alone and I hope knowing that helps in some small way.

Recall: FreeStyle and FreeStyle Lite Test Strips

From Abbott Diabetes Website:

November 20, 2013

Dear Valued Customer,

Recently, it has come to our attention that certain lots of FreeStyle® and FreeStyle Lite® Blood Glucose Test Strips produce erroneously low blood glucose results when using FreeStyle® Blood Glucose Meters, FreeStyle Flash® Blood Glucose Meters and the FreeStyle® blood glucose meter built into the OmniPod® system. Erroneously low results that are not recognized may pose significant risks to your health.

If you do not use the meters in the photographs below, your blood glucose test results are not affected and you do not need to read any further.

FreeStyle Flash® 
Blood Glucose Meter
 FreeStyle®
Blood Glucose Meter
OmniPod®

Please click here for Abbott's complete announcement that lists affected lot numbers and information about what to do next if you have strips that are part of the recall.

Thanksgiving Dinner (Skip if you read Snuffleupabolus)

Here’s a little tidbit that I’ve literally never told anyone, ever. When I see a turkey, I hear the Sesame Street character Snuffleupagus in my head. He says, “Buuurrrd.” Not a huge revelation perhaps, but it’s weird enough that it shouldn’t be shared. In the past, as the father of a child with type I diabetes, I’ve conjured other words while preparing Thanksgiving dinner. Those words were R rated and not appropriate for this blog post. These inappropriate words would pop into my head as I tried to imagine how many carbohydrates were in a scoop of mashed potatoes, homemade stuffing, dinner rolls, fruit, gravy and all the rest of the seemingly unquantifiable holiday treats that cover every inch of counter top in my kitchen.

I say in the past because I was finally able to get out of my own head last year and find a way to give my daughter Arden insulin on those long, food-heavy holidays without making myself crazy or causing Arden to feel like a science experiment.

I think I will call the result of my revelation, Snuffleupabolus. 

Could I measure everything that Arden eats on Thanksgiving? I could. But I’m cooking and cleaning, while socializing with family, trying to sneak a look at a football score and balancing the preparation times of more dishes than I normally prepare in a week. I’ve tried unsuccessfully in the past to count each morsel, but too often the results were uneven. I found that putting in so much effort and care without achieving the desired result to be defeating, and the end of the day brought blood glucose results that made me wish that we skipped Thanksgiving.

All of the day’s tasks are secondary to keeping my daughter’s blood glucose in range. Too low, too high, too inconstant. Each possibility comes with its own physical punishment for my sweet girl. I bet that you know what I want more than a golden brown buuurrrd, perfect stuffing or a well placed table. I want Arden to enjoy her holiday with minimal diabetes interaction or the unpleasant feelings that come with riding the diabetes roller coaster. The enemy of that desire, especially on Thanksgiving, is the difficult to count mixture of complex and simple carbs that tempt at every turn.

During the day we employ a cadre of slick diabetes moves. Increased temp basal rates to combat snacking, pre boluses to help get ahead of carb-heavy meals, and we lean heavily on Arden’s DexCom CGM for guidance (If you don’t have a CGM, frequent testing can produce similar data). But when that meal plate comes with its potatoes steaming and stuffing so plentiful that covers Arden’s slice of buuurrrd - I Snuffleupabolus. I do my best to guess at the carbs, but honesty, Arden’s belly only holds so much food. So if my estimate doesn't match the insulin amount of the largest meal that I’ve seen her eat in recent history, I increase the bolus to match that number. Likewise, if the suggested amount of insulin is greater than the largest recent meal, I decrease the insulin. The odds that Arden won’t eat much more than on a normal day are pretty good. Thanksgiving or not, that little kid can only eat so much food and I’ve found that historically most of her large meals need a similar amount of insulin. There is nothing scientific about this method and I only whip it out on days like Thanksgiving… but I’m getting good results. 

After the malay, I watch Arden’s CGM closely and test, we aggressively tend to high numbers and treat lows with pie and other desserts. The only real time-sensitive planning that I do around food? I like to pre bolus the main course 15-20 minutes before it’s served (DexCom admittedly makes that easier) and I make sure that dessert is finished and the eating frenzy is over, three hours before bedtime. I want Arden’s active insulin to be finished before bed so that decisions can be made about overnight care from a fresh perspective. This is something that I strive for everyday but is extra important on days that contained high amounts of exercise, stress or eating. Thanksgiving day contains all three of those variables in our house, as I’m sure it does in yours.

I hope that your family has a wonderful Thanksgiving, that your home is warm and full of good friends, loving family and one Snuffleupabolus that allows you to enjoy it all with a light heart.

buuurrrd

This post originally ran as part of a Lauren's Hope/Life Is Short, Laundry Is Eternal giveaway. I liked it so much that I wanted to run it in it's entirety, here on Arden's Day. Thanks to Lauren's Hope for not being weird about reposting! They're good people, please check out thier blog if when you get a chance... blog.laurenshope.com

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 Wednesday, November 20, 2013 at 1:28PM by Scott Benner

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