Getting to Bold
In the beginning of our life with type 1 diabetes I would cry in the shower...
The shower seemed like a good place to vent my fear, frustration and utter lack of confidence. I would emerge reborn having dumped my anxiety down the drain. The guilt and pressure would of course build up again but the venting would usually hold me over for a week or so. During that time I believed that this was how my life would always be. Every time Arden's blood sugar was too high, too low or just plain all over the place, I would think...
"Well, that's just diabetes. There is nothing I can do, it's out of my hands."
Here's the secret though. That's not just diabetes. At least it doesn't have to be.
This blog and the people reading it saved me from that life but not perhaps in the way you might imagine. If you were to go back a decade and read my posts you would see a person struggling as I've described here. The blog was a raw nerve, a mirror to my worst moments, periodic triumphs and ardent fears. I would have an experience and then write about it. It was cathartic for me and the readers felt supported because they saw their lives in mine. This was my original concept of what a blog was for and what community meant. I would share my life transparently and you got the relief that came with knowing that you weren't alone. My daughter's A1c was 9, yours sucked too and we all felt the momentary relief of sameness.
My idea of community has grown
I would make incremental yet unsatisfying improvements to Arden's care. We got an Omnipod insulin pump and her A1c went down, we cut out some foods and it went down again. Still, no great shakes just lower. Eventually Arden got a Dexcom CGM but all that seemed to do was enforce the notion that I sucked at taking care of my daughter's disease. Then one day our nurse practitioner told me that the biggest hurdle in type 1 diabetes management was fear.
More specifically. The fear of insulin
Those words clicked in my head and I began to force myself to not be afraid. This was no small feat as you are reading the thoughts of a person who caused two seizures in their daughter. Twice in the beginning years with type 1 diabetes I gave Arden too much insulin and she had a seizure. Today I realize that it wasn't the insulin that caused the seizures, at least not completely. It was my ignorance about how the insulin worked. When I realized that... everything began to change.
Bold T-shirts
Arden's A1c went from 9 to 8.5 to 8 to 7.5 to 7 to 6 to 5.6
“A platitude is a statement that has been repeated so often that it is meaningless. ”
I figured it out. The next question was what is "it" and more importantly how do I share it with you without the platitudes that often strangle our community. Have you ever heard that, "marriage takes work" or been told to "enjoy this... it goes by so fast"? People love to say stuff but then not give you any details. Have you ever wondered why we don't speak with more detail? I think that some stuff doesn't require more so we don't offer more. We also often don't have the luxury of the time it takes to fully explain. Diabetes however deserves and requires the next level of the thought to be shared, for time to be taken. The tried and true methods should be given to anyone who is interested in knowing them. The problem is that it would be a lifetime of blog posts or a library full of books that you could never read. Still, what if you read the answer but couldn't apply the information or didn't quite understand and needed one more example. We say crap like, "well, that's just diabetes" because it's difficult to do more and those platitudes rob us of hope. One day I got tired of accepting that and wanted to do more. I threw out the old chestnut that tells us that everyones diabetes is different and that experiences can't be thoughtfully applied to others. I ignored that trope because it is not completely true and I knew that I could find a way to extract the basic tenants of diabetes and apply them to everyone. Once I did that the next step was to give the ideas the weight that they deserved and the thoughtful explanation that they required. Above all else, I wanted to provide real tools that were easy to use for the people who were ready to try and hope that one day they would be ready to those who weren't quite there yet.
A Phone call
Recent Juicebox Podcast reviews. Click to expand. Seriously, read them.
When you share online people sometimes contact you to ask questions. As you can tell by this post I can get wordy when I write. So one day when I received a question from one of you and I responded, "maybe just call me". The first time that I spent a half hour on the phone with a stranger explaining the tenants that I use in the day-to-day management of diabetes... it felt weird. That strange feeling was replaced a few days later when that person contacted me again to say that they understood. They made the changes that we spoke about and their child's blood sugars were suddenly and markedly better. I asked that person to keep in touch. I say that to everyone today. "Keep in touch... let me know how this worked out". I say it to everyone for two reasons. 1. I really do care and 2. your feedback helps me the next time that I speak to someone. When that first person reached back out six months later with a significantly reduced A1c I thought, "I wish I could talk to everybody at the same time.".
So I started the Juicebox Podcast
The episodes of the podcast are self-contained, organic conversations that will help you to get to a better place with diabetes. But that isn't the real benefit of the podcast. Those episodes when combined reflect my continued maturation as a person living with diabetes. They are powerful separately but together they are an organic conversation that grows and builds and teaches - both me and the people listening. I never would have believed that it would be so powerful but I see it today in your social media posts, reviews and personal letters.
Here's what I know. When I am Bold With Insulin my daughter's life is better. She is healthier, happier and less burdened by diabetes. I then take what I've experienced and we talk about it on the podcast. You will absorb information and begin to apply ideas in no time. I've tried to replace those hope draining platitudes with simple ideas supported by easy to understand details about how to make them work. I'm not a doctor but I do have a decade of crowd- sourced experiences and a knack for explaining them.
You can help to shape how people talk and live
There are three people reading this post. Those of you who are already being bold, those who want to be and those who aren't sure if you can. If you you're already there, please help to keep the platitudes out of the diabetes conversation. Be supportive without being reductive and encourage people to be bold. If you know the there is more to diabetes than what you've been told. If you can feel it in your gut but can't quite bring it into reality. Please listen to the podcast. If you think that I'm full of crap or just can't imagine things being better. Please, take a leap of faith. A better life is waiting on the other side.
Be Bold With Insulin - Listen to the Juicebox Podcast
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On your Android phone or Google Play
You can also listen on your favorite podcast app by searching for Juicebox Podcast. The podcast is completely free for all listeners.
Dexcom Opens their API to Third-party Developers
Dexcom leads the way in diabetes yet again...
SAN DIEGO--(BUSINESS WIRE)-- DexCom, Inc. (Nasdaq: DXCM), the leader in continuous glucose monitoring (CGM), announced today the availability of a public API, empowering third-party developers to connect patient-authorized CGM data into a broad range of software applications. This pioneering approach to CGM data sharing is intended to enable a rich ecosystem of novel solutions and put the user in control of where and how they interact with their glucose data.
"In launching this developer platform, Dexcom combines our CGM data expertise with the creativity of the developer ecosystem to enable new solutions and business models in the treatment and management of diabetes," said Annika Jimenez, Senior Vice President of Data, Dexcom. "Dexcom believes in data mobility and customer choice. It also believes that the API opens up opportunities to drive Dexcom CGM data into the heart of new digital solutions for payers, providers, and most importantly people with diabetes."
Get to it diabetes app developers, go make something great!
Celebration!
50,000 Downloads!
Thank you for listening to the Juicebox Podcast and for supporting our sponsor OmniPod. I can't believe that the podcast has already reached so many people. I would like to thank each of you for subscribing, listening and for spreading the word. A special shoutout to those of you who have shared your experiences. Your candid and brave descriptions of your life with diabetes have strengthened the diabetes community and added to its advocacy and awareness. I have been honored to speak with each of you and look forward to much more in the future!
For those of you who haven't checked out the podcast.... c'mon 50,000 people can't all be wrong. Subscribe in iTunes, listen online, read a review. All you need is a browser or a podcast app (iPhone users, the app is already on your phone - just search 'Juicebox Podcast' and start listening today.
Available everywhere podcasts are found.... coming soon to the Google Play store.
Anatomy of a High Carb Breakfast
A step-by-step guide to how I managed a massive breakfast...
This image is here to help you to visualize what I am describing. Clicking on it will open a new page so you can refer back and forth.
Arden had a couple of friends sleep over last weekend and before they went to bed the girls asked if they could have french toast in the morning - I said, "sure!"
The meal consisted of:
- French toast with home made bread, eggs, milk & a sprinkle of powdered sugar
- Sliced Bananas
- Green Grapes
- Chocolate Milk
- No Carb Syrup
- Bacon
Let's start at the beginning...
Arden's BG was steady at 75-80 from midnight until three in the morning when I decided to do a thirty minute temp basal off (probably should have tried 50% decrease). I was woken at six in the morning when her Dexcom alarmed as it reached the high threshold of 160 (since changed to 130). I waited fifteen minutes before acting because I noticed that the line was beginning to trend down. Decided to do nothing (probably should have bolused). A little after seven I decided that this BG wasn't going to move (morning BGs are stubborn for Arden) on it's own and I began to try and nudge it down. I only used tiny boluses because I was trying to get her BG down, while also letting her sleep; all with an eye on being prepared to eat a high carb meal soon.
Ask yourself - Do I find morning BGs difficult to effect? Meaning, do they take more insulin and time then normal, to get moving?
Over the next hour and a half I used three small boluses (refer to image) to get Arden's BG moving, without it moving so fast that I may have to wake her prematurely. Her BG leveled off around 120 for a while. It began to drift down again as the girls appeared in the kitchen. It was time to get a portion of her pre-bolus going, but not too much. She was still dropping albeit slowly and I wasn't totally sure how long it would take for the meal to be completed. But French toast without a pre-bolus would not go well, so I started small (1 unit) with something that I could effect with the fresh fruit - if needed.
Food and Carb Counting - So I've got three girls to feed, a plate with a randomly sliced banana and a bowl of grapes as back-up (in case my pre-bolus gets wonky). Time to get cooking! I never specifically counted any of the carbs Arden would soon eat. I was sure that she would have some of the banana, probably a few grapes, lots of french toast - maybe with some powdered sugar. She was definitely going to drink the milk because we don't so chocolate milk very often, so that was looking like a treat. I made all of my insulin decisions based on my historical knowledge of how much Arden eats on average and what that amount generally requires in insulin. I was counting on her Dexcom CGM to tell me the rest of what I would need to know.
My definition of a successful Pre-Bolus - If Arden's BG is between 75 - 100 and falling when food consumption begins, I'm a happy pre-boluser. The girls threw a monkey wrench into my plans by asking for the fruit plate before I was planning to put it out - no matter, now I could bolus the balance of my intended initial insulin. I say initial because this meal was going to be a free-for-all and undoubtably require more insulin as it went on. The fruit and milk went on the table and I bolused again soon after, this time 4 units - again that amount was based on nothing but my feeling for what the meal, as it appeared so far, would require.
Feeding frenzy: Soon after the french toast hit Arden's fork her BG leveled off around 100, I knew then that an increased temp basal was in order. Why, you wonder? Five units is a good amount of insulin for Arden and the fact that it wasn't causing a fall in BG at this juncture indicated to me that the food was now pulling in the other direction and would soon overtake the bolus. I mean this is a lot of carbs. A combination of a heavy dose of simple sugars and more complex carbs.
So I increased the temp basal, 95% for one hour. Not long after that Arden asked for seconds of french toast (it is good!), I bolused for what I believed the seconds would require, 2 units. That bolus brought the total to 7 units of bolus insulin and an .60 of additional basal. I was happy with where we were and ready to see what would happen next. Oh wait... the girls want one more banana sliced up. Would Arden take two slices of it? Would she have four? I couldn't be sure but as I was deciding, I saw her put a fork full of powdered sugar on her french toast and so a bolused 1 more unit.... based on nothing but my gut feeling. Arden's BG began to drift up past 120 about an hour after I set the first increased temp basal so I extended it for another thirty minutes.
The girls finished eating and went back upstairs to do what ever little girls do during a sleepover. Three hours after the meal began... Arden's BG was 97 mg/dl by finger stick.
I wish that I could tell you that I was a great carb counter or that we have a perfect insulin to carb ratio figured out. I could lie and tell you that we do a lot of basal testing, but that's not true (I've actually never done that once). It certainly wasn't a low carb approach that got us to 97 three hours after this breakfast.
So I'm assuming that you want to know how I did this?
- Pre-Bolus
- Proper Insulin use; timing and amounts
- I trusted myself and what I've learned from past experiences
- I relied on the Dexcom G5 to tell me where I went wrong
- I bumped and nudge BGs instead of over-reacting and climbing on the diabetes roller coaster
- I was bold with insulin!!!
- I made my decisions based on the singular idea that I would rather (because it is far easier) stop a falling BG with a juice box, then spend five hours fighting with a high BG
I want you to remember a few things. First, this isn't medical advice, second the amounts of insulin and it's timing is different for everyone so you can't copy what I did and think it work. Third, I didn't do anything special, I don't have some super diabetes secret that you don't have. Anyone can do this. I mean it. It takes a little bit of practice and some trial and error - of course, the Dexcom sure does make the entire process simpler. But I promise that you can do this too and just imagine how easy regular meals and snacks will be if you can do this with a high carb, sugar infested meal like the one I described here. Right?!
Last bit. You may be inclined to think that what I described was a lot of work or that it was insanely time consuming... it was not. It just seems like it when it's written out and explained in detail. This blog post is representative of a few minutes of my focus during this morning. Trust me, it's far simpler than it seems and incredibly less stressful than watching, chasing and feeling the guilt that a high BG could bring after food.
You can do this too, I know that you can! Believing that is most of the battle!
If you are interested in following these thoughts further, I recommend listening to my podcast to hear these themes spoken about in real-life situations with people just like you. Best, Scott
You many also like:
Blog post: You Too Can Bolus for Chinese Take Out
Victor Garber has Type 1 Diabetes and a new show on the CW
Legends of Tomorrow, Titanic, The Flash, Alais, Legally Blond, Godspell; the man's IMDB page is a mile long!
Victor Garber stopped by the Juicebox Podcast to talk about his life with type 1 diabetes, his new show on The CW (a spinoff of The Flash called 'Legends of Tomorrow') and a diabetes charity that he supports called 'Beyond Type 1'.
You can listen now with the inline player above, on iTunes, Stitcher or your favorite podcast app - search for Juicebox Podcast. Please don't forget to subscribe!
Set your DVRs ~ Don't miss Victor on the series premier of 'Legends of Tomorrow', January 21st on The CW.
Its not often that someone is this willing to speak so open and honestly about their life with diabetes. I'm genuinely grateful for Victor's willingness to be transparent about his journey with type 1. It doesn't matter if you are a person living with the disease or someone just hoping to hear about his work on Legends... Victor Garber's kindness and desire for people to learn from his life overflow in this episode - I think you'll love hearing what he had to say, I certainly loved speaking with him!
"Whatever happens, I'll just make it work... because that's what i do." - Victor Garber
Show Notes
Learn more about the OmniPod tubeless insulin pump. When you try a free demo pump you are supporting the Juicebox Podcast. Thank you!
Take a moment to learn more about BeyondType1.org, check out their website.
Subscribe to the podcast in iTunes today!
Listen to the Juicebox Podcast online
Watch the trailer featuring Victor as one half of Firestorm!
