A1C: How We Got To 5.7
I've written blog posts for years about how we've reduced Arden's A1c. I've told you about the OmniPod insulin pump, DexCom continuous glucose monitor, modifying diet, being bold with insulin and more. The process has existed on many paths. We had to conquer school days, overnights, carb rich foods, sports and my fear of insulin. If you search the phrase "A1c" on this site a bevy of blog posts will return and they all highlight a moment of the journey. You'll see us get out of the 9's, the 8's the 7's and finally claw our way to sub 6.
Almost each time that we got the number to decrease I would spend the ride to Arden's endo appointment telling her not to be disappointed if her A1c goes up because I was always trying things and never really sure if they would work. Diabetes is the ultimate on the job training
Last weeks Endo visit was different...
When we got into my car I told Arden, "Your A1c is going to be 5.7, watch and see". I was confident, almost brash when I told her this. Sure I was cheating a little - truth be told - because I have the Dexcom Clarity app on my phone and can see Arden's A1c. But still my confidence was rooted more than just being able to see reports from her glucose monitor ahead of her quarterly blood test. This confidence was bigger than data because I finally know what I'm doing. No more guessing, no more wondering. Today I trust my gut and we attack Arden's blood sugars with a steely resolve. All of our experiences have finally added up and the seemingly senseless actions of diabetes are finally making sense.
The way I arrived at this resolve is why I'm writing today...
In the Spring of 2015 I launched a type 1 diabetes podcast called the Juicebox Podcast. My intention was to share my experiences being the parent of a child living with diabetes in a new medium and hopefully to a wider audience. That was it, no larger or grander plan. I was just starting a podcast. Since then the podcast has reached more people than I could have ever imagined and the response from listeners is largely very positive. Better still, I receive emails, FB messages and tags on Instagram nearly daily from people who want to tell me how the podcast has helped them - those notes are unimaginably wonderful to read. The idea that a persons A1c is lower and more stable, that their life feels calmer and easier to enjoy... that feeling is well beyond any initial hope that I had for this blog or the podcast. I can't lie and tell you that I didn't think the podcast would be helpful but I wasn't able to imagine to what extent or that it would actually also help me.
So how did we get to 5.7? The simple answer is by doing the podcast. It turns out that by taking the time to record the show, by having conversations with other people living with diabetes... I was allowing myself time to consider aspects of my management theories as well. Pausing life for a moment to think about type 1 and how to best approach it. I'm not a pre-planner at heart, I go and work things out as I'm moving. So some of the tactics that you have adopted through the Juicebox Podcast are things that occurred to me while recording the podcast. I took my experiences and spoke about them, during those conversations things came to me that previously had not. My ideas were growing and taking shape as I was sharing them with you. I learned from diabetes, you learned from me and I learned from you. A circle, a wonderful blue circle.
When I decided to stop being afraid of insulin, others followed. You had great success with that idea, I was enthused by your stories. That enthusiasm helped me to chase more fancy, find success and report it back to you. In return you contacted me and some of you come on the podcast to talk about your experiences - another blue circle. When I hear from you that the podcast is helping in your life, that knowledge supports me and we move forward together.
That is what community is...
I cried when one of you told me that your daughter has been playing for hours with a stable blood sugar. Your words, "she seems like herself again" striking me at my core. This exchange is one of the great moments of my life. All I want is for my daughter to have a chance to be herself and live her life. That a podcast was able to bring that dream to another person has made my heart soar.
There are many other stories and when each of them reaches me my desire to continue doubles. You all are the reason that Arden's A1c is 5.7, I have no doubt of that fact. I need to thank each of you and I want to invite you to come with me as I try to keep Arden's BGs stable, her A1c constant and try to make all of our lives better.
The Juicebox Podcast is one of the true surprises of my life. I just never imagined...
I understand that not everyone knows about podcasts or how to find them but it couldn't be simpler. iOS users on iPhone and iPad only need to click this link, you already have a podcast app. Android and Google Play folks can click here. You can also listen online at JuiceboxPodcast.com, on Stitcher, iHeart Radio or in your favorite podcast app. Start at the beginning and take the journey with me, you'll catch up to subscribers in no time. The podcast is 100% free, I offset my costs by accepting ads on the show. It will never cost you anything to listen to the JBP.
If the podcast has helped you please consider leaving a comment below so that others may find the support they need to try an episode. #A1cYaLater #BoldwithInsulin #DiabetesandFear #TellAFriend
Arden's Nine Year Diaversary
On this very date, some time after midnight in 2006, I remembered something that I meant to say to my wife Kelly but forgot to earlier in the day. Arden was two years old, we were on a family vacation and she had been very sick for days. Our family was gathered around a table playing a board game late at night, Arden was sleeping on Kelly's lap.
"Arden’s breath smells funny, metallic or maybe sweet..."
Moments after I spoke those words, all sense of joy left our world. A few hours later Arden was diagnosed by an ER doctor with type 1 diabetes.
One year later as the anniversary of that night approached, I started writing on the Internet about my life as the father of a child who lived with type 1. I posted my first blog at 3 am. I spoke in that first post of a high BG that was over 220 and I talked about that number like it wasn't really that high. Back then our diabetes technology consisted of a small meter and not much else, I was scared, our technology was lacking and 220 seemed safe as she slept. Safe in the short term that is.
Much thankfully, has changed since then...
Tonight Arden is sleeping in her bed, BG is 78 and steady. I'm bumping it up before I go to sleep with a short temp basal decrease on her Omnipod, I'd like to have it at 95 before I finish writing this. I'm watching her blood sugar in real-time on my iPhone at the moment. Again, much has changed in nine years, no more sneaking into rooms like a vampire.
My daughter has had type 1 diabetes for nine years and I've been sharing my life as her father for eight of them. I've seen this blog help many families and I have a sincere hope that it will help many more. Arden has always been generous and allowed me to share my experiences without reserve. Aside from the occasional request to leave out a detail, she lets me tell my story in the hopes that something we have learned or lived through may help you. I got my joy back years ago and I don't want you to be without yours for a second longer than you have to be. I believe very much that community support in all its forms, is key to finding balance and recapturing the joy you felt before diabetes arrived.
But my story is her story and she's made a request...
Arden no longer wants this blog to be adorned with a header image that depicts her as a four year old. A reasonable desire, I'm sure you agree. She made this small request at the beginning of 2015 and since then I've been working with an artist that I love to replace the art that is at the top of the blog, on Facebook, Twitter as well as my social media badges. The banners, profile images and Juicebox Podcast cover art are nearing completion and should begin popping up in the coming weeks. The artist has created a representation of that sweet picture of a four year old Arden, the one in the yellow top, that is reminiscent of the original. It was my goal for current readers to be reminded of that image and for new readers to not see Arden as a four year old.
Moving forward my goal for this blog and my new podcast remains the same as ever. I'll live my life as well as I can and when something happens that I believe would help you to live yours, I'll share it here and on the podcast (Which you guys are being so supportive of... thank you!). A podcast, a lot really has changed in nine years.
By the way, Arden's BG is now 98. I temp basal'd that low away like a champ... but then I've had nine years to practice.
Until there is a cure, I'll be here if you need me.
Arden's Day of Diabetes: #DayofDiabetes
Around a year ago the JDRF did this cool thing where people could sign up for text alerts that were meant to simulate having diabetes - so people could understand better the relentless nature of living with type I. I loved that idea, but how could I not? That's exactly how I started Arden's Day.
Six months ago some wonderful folks did it again on Twitter using the hashtag, #DayofDiabetes and I loved the idea even more (Twitter is perfect for this) and participated in the event. Those same people brought up doing it again today - I'm in.
I'll be tweeting, Facebooking and refreshing this blog post all day whenever diabetes requires interaction. I wonder what kind of day with diabetes this Day of Diabetes will be?
Midnight: My day with diabetes began around midnight when a late evening bolus just would stop. Managed temp basal rates to get Arden's BG to 110.
4 AM: Up again to set more decreased temp basals. Finally gave up around 5 AM and gave Arden some juice (1/4 of a box) . Ended up staying awake because the juice wasn't working. Of course, the juice I added at 6 AM ended up being too much - figures.
7 AM: Up for school and now blousing to stop the BG rise from the second juice sips. CGM now 160, arrow straight up. Juice sips worked too well!
7:50 AM: Replaced juice box in Arden's bag (Used it last night for a low during softball pitching practice), set a timer for 45 minutes on her phone. Going to try and eliminate high BG (190 CGM) before school snack at 9:30 am.
8:28 AM: Blogged about diabetes
9:07 AM: Just texted with Arden, need her to test her BG. She told me to "wait five minutes" apparently they are in the middle of a contest. #DayofDiabetes
9:30 AM: Arden and I texted for her school snack. BG was 190, stubborn this morning. We boluses for 30 carbs. I asked her to test, she wanted to bolus from CGM. She said, "Fine I will but if they match I will poop on you" - I hope she meant the emoticon. They matched BTW.
11:00 AM: Lunch time text.
1:48 PM: Post Gym #CGMnow is 97. Temp basal off for 30 min and a few carbs should hold it there. We’ll see. #DayofDiabetes
2:30 PM: Arden will be home soon. Time to pack a bag with supplies so we can go watch her brother play baseball for the school team. I don't remember what it feels like to run out the door with just my wallet and keys. #DayofDiabetes
3:16 PM: So the one day I try to outsmart an after school drop in BG... diabetes does the opposite. 185 and creeping up. Damn
5:07 PM: Some mini muffins will stop the bg fall. Only bolusing for half. #DayOfDiabetes
6:30 PM: Made a wild guess about dinner carbs on the way to a restaurant. Needed the pre-bolus time to work on a slightly elevated BG. I won't know hoe well I guessed for about 90 minutes.
Scott on Disney's Spoonful
I hear from mothers a lot about a perceived lack of engagement with diabetes from their husbands...
so when Disney asked me to write about being the father of a child with type I diabetes... I used the opportunity to explore that issue in a way that I thought you guys would appreciate and benefit from - sorry you have to click to another site for this article, but unlike the deals I've been able to make with my other freelance work, I can't repost this one on Arden's Day.
I do think that you'll find it a worthwhile read and the site doesn't have ads or try to sell you anything (though your brain will read the post in Donald Duck's voice). Spoonful is a Disney/Lilly Diabetes initiative and they do a great job of offering content that I think you may enjoy and find useful - I tried to add to that tradition with 'Dads and Diabetes'. I sincerely hope that you like the piece and that it sheds some light on why your spouse may not be as involved with your child's type I caregiving in the way that you want.
For transparency: I was compensated, with a standard fee, for the article.
Need a bit of advice...
I have an opportunity to share an excerpt from my book on Huffington Post Parents. If you have one, would you please share your favorite chapter or passage - I'm having trouble deciding which one to highlight. The text needs to be between 500 and 1,000 words, able to stand on its own as a blog post and speak to the parenting community.
I would really like to find out what parts of 'Life Is Short, Laundry Is Eternal' you found particularly memorable. This is such a great opportunity for the book to find a wider audience... I'm getting nervous that I may choose wrong and blow it. I've tried reading the reviews to get a feel but they are mostly about the book as a whole. I asked my publisher and my wife for their opinions but I think that when it comes down to it you guys will know best, I can't decide... I'm far too biased.