Sponsored: Toby’s T1D Tale available on the App Store
Toby’s T1D Tale
Please be sure to check out the newest educational app for kids from Insulet. Available in the Apple App Store now, simply search for “Toby’s T1D Tale”. In Toby’s T1D Tale, Omnipod® mascot and Podder™Toby the Turtle™ provides diabetes education to children and caregivers through stories, tips and trivia.
- Follow Toby on his journey from diagnosis to management of his type 1 diabetes
- Show off your skills and what you’ve learned along the way in Toby trivia sections
- See how Toby and his family handle sick days and sleep overs
- Choose to have Toby’s story narrated to you or read it by yourself
Please note, the app is currently only available on iPad and in the US.
Insulet (OmniPod) is a sponsor of the Juicebox Podcast. Insulet pays for their ads on the JBP but did not pay specifically for this post. I'm including it here at no charge out of gratitude for their continued patronage of the podcast.
The Importance of the Diabetes Community
For those of you who are new to Arden's Day...
I do a little freelance writing some times. Once a year I write a series for Insulet, the company that makes the Omnipod insulin pump. It is no secret that when I'm paid to contribute articles the company paying me is hoping that my blog readers will checkout their blog, site, products etc. Hopefully they also like my writing, but I digress.
When I negotiate my writing contracts I always push to be able to repost what I've written here on Arden's Day. There are two reasons for that. 1. I don't want you to feel pressure to visit another site and 2. I don't want to hand in less than my best work in an effort to keep the 'good stuff' for Arden's Day, and for you. This way it's all the 'good stuff' and you can read it where you'd like. Alllllllll that said, this is the first in my five part series on the Diabetes Community. It ran on Insulet's Suite D blog one month ago (I have to wait a month to post here). Part 2 is up now on their blog as well, you can read it on Suite D or wait until next month and I'll repost it on Arden's Day. One last word on this. While I am paid to write for Insulet, it's not nearly as much money as you may be imagining and besides, there is no amount of money that could make me pass information or sentiments to you that are anything less than my 100% real feelings and experiences. This blog, our community and the responsibility that I feel toward you all means too much to me for anything like that to every happen. I just love the Omnipod and am happy to tell people about it. And you know what? Good on Insulet for letting me repost here, they couldn't have been thrilled when I made that request.
Part 1: How it Saved Our Family
When my daughter Arden was diagnosed with type 1 diabetes in 2006, our family was violently thrown into a world that we didn’t understand. The days, weeks and months that followed were full of endless sadness, fear and moments that hindsight would later tell us we could have handled much better.
I’m choosing to share my largest diabetes misstep from that time in our lives, because it led me to what may be the most valuable discovery of my adult life. This is part one of my five-part series about community and how it will save, support, teach, improve and transform your life with diabetes.
I should have sought out other people who understood our struggles, I should have found community. Too many of the decisions I was making were informed by speculation that was fed by an often self-imposed and largely unnecessary fear.
What I needed was support and wisdom, but instead I hid from the world and, in doing so, created a vacuum that was not conducive to living well. Had I found other people living with diabetes sooner, they could have shown me what I now know, but took much too long to discover.
Arden and Kelly at our first JDRF walk, two months after diagnosis.
My first experience meeting other people from the diabetes community was at our local JDRF walk. The walk we attend goes through a park full of winding paths, steep hills and majestic scenery – countless thousands of people all moving forward in love and support of one another.
At some point during the morning Arden needed insulin. We had just stepped off the path so others could pass when I realized that pausing our life to give Arden insulin didn’t seem in any way noteworthy to the people passing by. And then it hit me.
Everyone here has or loves someone who has diabetes. They don’t look scared and their faces don’t reflect the sadness that I feel. We were suddenly and beautifully surrounded by people whose lives weren’t being defined by diabetes. It was right then that I began to believe that diabetes wasn’t always going to permeate every second of our lives.
To this day I believe that the most beneficial aspect of what the JDRF provides is the opportunity to find sameness. If those walks didn’t produce a dime for research, I would still be there each year just to spend a little time around people who understand. Each year when I walk, my greatest hope is that someone who is feeling as I once did will see our faces and think, “I’m not alone. Those people look happy – we can be happy too.”
Community can take many forms and often the support you need can’t wait for a moment that can be found in real life – you may need the community to come to you. Luckily, the diabetes community is one of the most well-represented patient communities online. There are so many different ways to find kind, helpful and present people who would love nothing more than to help you believe that living well with diabetes is a tangible goal. These people have walked the path that you are on – they know the shortcuts. They write blogs, take the time to lend an ear on forums and give their best advice on Facebook pages. You haven’t been hugged until you’ve been hugged virtually by a stranger whose only desire is for you to not feel alone. Now that’s support!
Read 'The Importance of the Diabetes Community' Series
Part 1: Currently Reading
Part 2: Finding Support
Part 3: Coming in April
Part 4: Coming in May
Part 5: Coming in June
Feel what it’s like to wear the OmniPod – with no obligations. Click here to order a free Demo today.
Kris Freeman: The Arden's Day Interview
The road to my interview with Kris Freeman starts when he posts this picture on Twitter as the Sochi Olympics are beginning. The photo of Kris and his fellow US cross country teammate Kikkan Randall (say Key-Can) caused me to have two distinct thoughts, “I am significantly out of shape” and “This reminds me of a point in my life when I was afraid that my daughter Arden was too lean to wear an insulin pump or continuous glucose monitor (CGM).
I immediately reached out to Kris and inquired about using his image in a blog post that I wanted to write called “Worried Your Child Is Too Lean For An Insulin Pump Or Cgm?”. Kris, very generously agreed and then I asked him if he would be willing to do an interview with me after he arrived home from Sochi.
My interview with four time Olympic athlete and type I diabetic, Kris Freeman
Scott: When you posted the photo was this just you celebrating the games starting with a friend or did you have an idea that it would help people who wear insulin pumps and CGMs?
Kris: We were just playing around… we were both just taking off our wet shirts from training and I was like, “Hey this might be cool, lets take a picture”.
I told Kris how I wanted to use his photo to help lend Arden’s Day readers the same support that I was offered many years ago on Twitter. It was then that a woman in her thirties reached out and told me that she was lean (like Arden) and had no trouble finding good sites for her pump. That brief conversation took away my apprehension about Arden starting on an insulin pump and I wanted to return the favor . "My blog posts are fine" I thought, but this picture of Kris is certainly more inviting, informative and poignant then any words I could throw together. It really makes the point that a person can find a pump or CGM site no matter their body type.
S: The blog post that included the picture of you with Kikkan is one of the most popular posts that has ever appeared on my blog. Seeing an insulin pump and CGM working on such a lean person was inspiring for so many people who live with type I diabetes and their parents.
S: What is your average body fat when you are in competition shape?
K: I go off of a body fat monitoring scale and I range anywhere from 4 to 8 percent. The scale has some inaccuracy in it depending on your hydration level, but I harbor around 5 to 6 percent normally.
I asked Kris if he knew the average body fat for an adult, he wasn’t positive but he guessed it may be around twenty… I looked down as he was speaking and thought, “What must mine be...?”.
S: How many hours a week do you train to maintain that level of fitness.
Kris gave a complete answer about varying his effort, “Each month I’ll have two hard weeks and two easier weeks, so that my body doesn’t get used to a certain load”. “I also change the amount of volume from month to month”. He says that he trains the hardest in August and September and then through October, November, December the volume comes down but that during those months, “I train harder, I ski faster, do intervals… training my anaerobic system instead of my aerobic system”. “If you want to just know how man hours a week I average, last year I trained about nine hundred hours for the year. That includes one off day a week and illnesses that don’t allow me to train”.
I did some quick math and it sounds to me like Kris trains on average of twenty to twenty-two hours per week, or the equivalent of the amount of exercise that I did between 2008 and 2010.
K: My biggest training days are five to six hours and the smallest is one to two.
S: Since there isn’t always snow available, how do you train for cross-country year round?
Kris training on Roller Skis. Image courtesy Krisfreeman.net
K: I do a lot of dry land training, I use roller skis. They look kind of like roller blades but they attach with the same boot and binding as my skis. They are remarkably good at mimicking the muscle use of skis, it’s just a different feeling to be rolling instead of gliding.
S: When we were watching you ski at the Sochi games it occurred to me that your life is kind of like a living diabetes blog. That the simple act of you going about your day is an act of support and relief for people who live with diabetes and the people who love them. I’ve received countless letters over the years that thank me for sharing our life with diabetes here on the blog, people often say that it "saves" them. I was wondering, do you see that your presence in the public eye is doing the same for people?
I loved Kris’s answer
K: I have never set out to be a role model or an inspiration in the diabetes world. I was just doing what I love to do and I found solutions with my own diabetes care that allowed me to do it. I was alerted that what I was doing was inspiring other people and so over time I’ve embraced the image of a role model but it was never something that I thought of (about) myself.
I tried a few more times to give Kris credit for the example that he provides for the diabetes community but he remained very humble. I could tell how incredibly pleased he was that his life as an Olympic athlete is uplifting to the community, he insisted that he is glad he can inspire people but, “I’m still just me and I’m trying to be the best ski racer and person that I can be, I don’t get out the door everyday and think I’m going to be an inspiration.”
I told Kris that when we watched him compete at Sochi I was struck by the amount of effort and training that cross country requires and thought that it must seem, to most people who have diabetes, to be something that is out of reach for them. I wondered aloud if people with diabetes identify with the image of him working so hard to reach a difficult result.
S: Your life is a figurative example of diabetes. There is no end to the amount of effort that you have to put in, your footing is never secure and it almost always feels like you are slogging up an incline. I guess you can paint parallels between almost anything, but this one seems pretty obvious. It’s possible that when people are watching you ski, they see themselves in your effort. I hear it in your voice and I’ve spoken with you before… I know you're not trying to be a role model, and I’m not a big believer in role models. I don’t think that anyone should be looking to other people and expecting them to live their life in a certain way, but when it happens organically, it’s beautiful. You're living a blog… and it’s helping people.
We spoke about the interview that he did with The Olympic Zone on NBC and I remarked at how popular it was in the diabetes community.
S: The NBC interview was shared online, liked and commented on furiously. In my opinion it helped people to understand that their diabetes can’t hold them back and it takes away some of the fear that parents of children with type I may have. Seeing you on that stage doing this incredibly difficult thing, it lets parents know that their kids lives can still be all that they hoped for when they first held them as newborns. How does it feel to hear that and to have the support of so many people who identify with you?
K: For sure, knowing that people are watching and are encouraged by what I am doing is inspirational to me. Similar to the advocacy work I do with Lilly visiting summer camps*. I know that I’m having a strong impact on other people… even though it’s hard for me to believe. I know in the back of my head.
S: Does competing at such a high level change your definite of success? I know you weren’t happy with your results at the games.
Kris at ADA Camp Triangle D in Ingleside, Illinois. Image courtesy of Lilly Diabetes
K: I’ve been fourth at the world before at the World Championships, which is the same level of competition as the Olympics, so finishing in the fifties was not impressive (to me). I was not on my A game at the Olympics, I wish that I could show what a diabetic can do, but at the same time... maybe that doesn’t matter to the (diabetes) community. Maybe it just matters that I was there and that I’m a competitive athlete.
S: The difference between first place and last was only a few minutes, I guess in your world thats an eternity but I was like, “Sh*t I’d give them all a medal”. Is that kind of a finish motivation to keep going?
K: I’ve been closer in my career and I know what I’m capable of when I’m at my best and I was just not there. That happens. I missed something in training, my coaches and I still don’t know (what) but usually it becomes apparent later. The drive to be the best in the world is the same drive that gets you to the Olympics. You don’t get to the Olympics because you are satisfied with where you are. You get there because you want to be the best in the world and when you get there, you want to be the best (on that stage).
K: This reminds me of a question that I get at the camps a lot. People ask, “are you the best diabetic athlete in the world?”. I always say I don’t think about that and I don’t really care if I am or I’m not, I’m trying to be the best athlete and skier that I can be. I don’t identify myself first and foremost as diabetic person. It’s part of who I am, I’ve never been ashamed of it. I’m very open with it and I like educating people about the disease, but it is not my primary identifier.
S: How do you rebound from Sochi, is it more metal or physical.
Audio answer
S: In regards to the answer that you just gave. I see a strong correlation between it and diabetes. Do you see that as well?
Audio answer
S: Do you have Olympic aspirations for 2018 in South Korea?
K: I’m not going to rule it out but I’d say the likelihood isn’t great. I’m will only continue ski racing as long as I can stay at a very high, international level. Definitely racing next year and if I continue to race to my standards then I will continue the next year, and the next year and that year will be an Olympic year. If I’m tired and my body is not responding to training anymore, as sometimes people don’t when they reach my age, then this next year will be my last year. But I don’t expect it to be.
S: So your professional skiing goals are to keep skiing and doing your best, and see where that leads you?
K: I have higher goals than that. I’d like a top ten finish at the World Championships next year, I’d like to stand on top of the podium again at U.S. Nationals. I think that those are both attainable goals, they are also high goals. I’m not interested in staying in the sport to watch my skills slowly deteriorate. I want to stay in while I’m still competitive and I’m going to give myself another year to do that.
S: What do you want to do after skiing ends?
K: I plan on venting my competitiveness by going into semi-pro triathlon, the very next year.
S: Aside from the competitive nature of the sport, what do you love about skiing?
K: One of the coolest things about cross country skiing is that you never have to stop, you don’t get to the bottom of a run and have to get on a lift. Every time I do it I get a little better at it, a little more efficient. To just know that I can go out and ski fifty miles without being exhausted, just kind of gliding… it is really cool. I’ve been exposed to and competed in all kinds of skiing, but cross country is what brings me back.
S: I wanted to finish by sharing something with you. The day after your NBC interview Arden went to school and talked about you during her share time. She told her class that she knew a man that was in the Olympics and that he skis on “those really difficult courses”. His name is Kris and he has diabetes just like me, he even wears the same insulin pump and CGM as me.
I explained to Kris that the kids are all aware of Arden’s type I and about how we manage her BGs during the day without her ever leaving class.
Because of our level of transparency, the other children and teachers are very aware of Arden’s diabetes. Even though they see it up close, there are still many who believe that it will limit her. I told Kris that Arden was able to stand in front of her class and tell everyone (in essence) that this person who is competing at the Olympics, this guy who looks like a superhero - he’s me. I don’t have limits.
S: I’m pretty sure that if Arden did that the next day, well, I bet a lot of kids did the same and I’m certain that people with diabetes everywhere also felt that same message of hope and fearlessness from watching you.
K: I hope that’s true, I think that so many of the limits that are placed on diabetics are based more on ignorance or outdated ideas of what the disease means. I like to say that there are no limits to diabetes as long as you take responsibility and treat it.
links
Kris is on Twitter @TeamFreebirdXC
Lilly Camp Care Package - * Camps run by the ADA and the Diabetes Education and Camping Association. Lilly supports the camps by donating supplies.
Check out Scott's book, Life Is Short, Laundry Is Eternal: Confessions of a Stay-At-Home Dad
Helping Children with Diabetes Gain Independence
This is part four of my six part series on helping children with diabetes to gain independence. I wrote this series for the makers of OmniPod, they are running it on their blog called, Suite D. If you missed them you can read the first three parts on Arden's Day here or on Insulet's site.
Part five, 'Taking it one moment at a time', is live today only on Suite D.
Part 4: Diabetes Management Plan
I began part one of this series by talking about technology and how it aids my family every day while we manage our daughter Arden’s type 1 diabetes. In part two, I spoke about the health and educational issues that lead me to want to do things differently. In part three, I jumped to the end of the story by sharing proof of my changes in the form of a much lower A1C and the elimination of missed class time. Today, I’d like to talk about the nuts and bolts of Arden’s diabetes management plan. It’s super simple…yet amazingly effective!
I’ll begin in the early morning because starting the day with a manageable blood glucose number gives you a reasonable chance of getting the rest of the day to follow suit. I like to check Arden’s blood glucose about an hour before her alarm is set to go off so that I can knock a high blood glucose or try to adjust a lower number with a temp basal. We test when Arden rises and pre-bolus for breakfast. The timing of the breakfast bolus is planned so that no more than two hours goes by before our next blood glucose look-in at 9:30 AM.
In between the breakfast bolus and 9:30 AM, Arden will text me if her CGM indicates that her blood glucose has gone below our low limit, above our high limit or shows arrows that indicate a fast rise or fall in her blood glucose. Most days, however, I don’t hear from her until the 9:30 AM pre-snack look-in. Both of our phones are programmed with matching alarms to remind us of CGM checks, pre-bolus needs, blood glucose testing and activities, such as gym class. The alarms are a back-up, as there are times that we both need reminding.
Arden’s text will arrive as simply as this: 140 >.
Depending on the situation I may say something like, “15 carbs,” “test” or “juice.” Arden responds in a few moments with the suggested bolus, a blood glucose reading from a finger stick or a suggestion for a different source of carbs. Our conversations generally last less than two minutes.
The next alarm sounds 15 minutes before lunch and we always test. I like, when the situation allows, to have Arden pre-bolus lunch unless her blood glucose is borderline. When that happens I have her bolus some of the lunch carbs early and then we do the rest when she is seated in the cafeteria. Arden’s 504 plan allows her to leave for lunch five minutes early everyday so that she can settle in and communicate with me prior to the insanity that surrounds the children piling into the cafeteria. We normally speak to each other at this look-in because there is a lot more going on surrounding a meal than during a simple CGM check or test and bolus. Our 504 plan also allows for us to call each other whenever we need, at any time of the day.
Two hours later, we take a look at the CGM. Too much lunch insulin? Not enough? This is a great time to find out and the check gets us ready for the bus ride that’s coming in a couple of hours.
Handling Low Blood Glucose Readings at School
At this point you are wondering how we handle low blood glucose levels, am I correct?
We have a stash of juice boxes, pre counted snacks and water in Arden’s classroom. Additionally, Arden carries herOmniPod PDM, CGM, lancing device, test strips, fast-acting glucose and a juice with her in a small purse. The combination of well-timed look-ins and our reminder alarms stave off most unexpected lows, but they still happen. Last week Arden’s blood glucose was falling fast during gym class. I received the following text…
“61 arrow down”
I replied, “juice then test.”
This is the moment when you have to trust the system because you have to wait for a minute or two to allow time for drinking and re-testing. It can be nerve-wracking…I won’t lie.
Arden: “Juice in.”
Me: “Dizzy?”
Arden: “No, I want to go back to gym.”
Me: “Calling.”
We spoke on the phone and Arden told me that her CGM arrow was already turning back up, she did not feel dizzy and reiterated that she wanted to go back to the activity.
As much as moments like these can scare me, most of the fear that I’m feeling is really Arden gaining independence, and of course, me giving away control. But isn’t that what I want and is there really a better way for her to learn?
Please know that I was compensated for my writing in an amount that would be considered standard for freelance blogging. My family pays for Arden's OmniPods with insurance and out of pocket cash. My writing for Insulet has no impact on my opinions or the information that I share here or anywhere online.
Pound the (Omnipod) Alarm
From: System Documentation: New Omnipod PDM Model UST400
Have you ever experienced an Omnipod alarm that wouldn't stop?
Have you gone online to find out how to save yourself from the incessant squeal and receive tips like: You can open the pod and take out the batteries, put it in the freezer, hit it with a hammer, or my favorite... I put it in the driveway and ran it over with my car.
While I have to admit that a few of those tips sound like a great stress reliever, you don't really have to go to all of that trouble. All you need actually, is a paper clip. The new smaller OmniPod has a manual shut-off port (Just like the first generation did) for stopping that annoying alarm! If you'll refer to the diagram above that I borrowed from page 131 of the system documentation for the new Omnipod PDM Manual (Model UST400), you'll see where the port resides.
