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
On your iPhone or Apple Podcasts
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.
Juicebox Podcast in Diabetes Forecast Magazine!
Diabetes podcasts in the spotlight!
A huge thanks to Diabetes Forecast Magazine for spending some ink on the podcasts dedicated to people living with type 1 diabetes. You can listen to my show below or follow the link to Diabetes Forecast to see the others highlighted.
Apple Podcasts - http://bit.ly/JBPAPod
Android - http://bit.ly/jbpandroid
Spotify - http://bit.ly/JBPspot
Google Play - http://bit.ly/JBPGoogplay
or JuiceboxPodcast.com
Check out the latest edition of Diabetes Forecast Magazine… on your newsstand now.
Arden's past and current 504 plans are available to Download
Back to school...
Well the years are flying by and Arden's 504 plan is constantly morphing. Please feel free to read, download, use these documents as your own. You may need to make changes so the document reflect your child's specific needs. Arden's 504 was originally written by me in 2006 though I relied heavily on the JDRF and ADA templates of the day. Arden's 504 has been slightly modified each year since kindergarten, just like Arden it continually changes and grows. I hope that it helps you in creating your own. I'm digging up 504's from other grades and will be updating this page with new documents as I am able.
The plans have been redacted in the spots where you will need to fill in your information. Look for text that looks like this <TEXT>.
Good luck!
Documents for download...
Arden's Kindergarten 504 for download - Word, Pages
Arden's Sixth Grade 504 for download - Word, Pages
Arden's Seventh and Eight Grade 504 for download - Word, Pages
Go deeper...
While you are thinking about diabetes and education I would like to urge you to listen to a few episodes of the Juicebox Podcast that focus on a student's time at school.
Texting Diabetes: All about how we use something as simple as text messaging to manage Arden's type 1 diabetes while she is at school or anytime that she is out of the house. This simple process has led to lower a A1c, better grades, an increase in self-confidence and much more.
Talking 504 Plans with D-Mom Jill: Getting a 504 plan is easier than you think and it's super important!
Talking To School Administrators That Don't Get Type 1 Diabetes
Going to College with T1D: College freshman Elias was diagnosed with type 1 diabetes before his senior year in high school.
Teach Our Children Well: Is what you say about type 1 diabetes to your teachers and administrators always what they hear and do your expectations and needs match what they understand and are able to deliver?
Advocating at School: This is taking advocating for children with type 1 diabetes to a new level.
College with Type 1 on Day One: Amanda has only been at college for a few days and she's on the podcast to tell us about her initial experience.
Teacher of the Year: Denny is a good man and a great teacher. This episode is all about the difference that one dedicated teacher can make in a child's life with type 1 diabetes.
Sugar Rush
Erin was my guest on episode 170 of the Juicebox Podcast. Check out her episode and her blog, 'Sugar Rush Survivors'.
After my son’s diagnosis in 2013 at the age of 21 months old I did what a lot of parents do when faced with a life altering diagnosis. I searched online for anyone sharing their experiences with type 1 diabetes (T1D). I joined Facebook groups, read blogs and listened to podcasts. One source I found was Arden’s Day by Scott Benner.
A few months ago on one of the T1D Facebook pages I follow I saw a post by a familiar name. Scott asked for input from fellow parents of children with T1D for his Juicebox Podcast. I thanked him for his podcast with Dr. Denise Faustman and offered to talk with him for the podcast. We connected on Skype and recorded an episode titled, 'Just another Tuesday with Type 1 Diabetes'.
I have experienced the instant bond among T1D parents many times now and it just never gets old. Being able to look another person in the eyes, knowing that they understand the triumphs and fears of this daily life is incredibly reassuring. To hear compassion in another person’s voice in answer to my questions and frustrations makes it easier to continue with the hundreds of decisions I make to keep my son’s blood sugar in range as much as I possibly can.
Scott has brought that compassion and understanding to listeners all over the world and is continuing to make the diabetic online community (DOC) a landing pad of understanding and education. When we spoke for the podcast he encouraged me to lower my son’s Dexcom high alert from 170 to 130. I had been nervous to lower it prior to talking to him but I tried it. It has helped us keep his blood sugar in range by alerting us of rising blood sugar so we can act on it sooner than we had previously.
I found another powerful connection when I met my friend and blog partner Alese. When my son was diagnosed a few months shy of his second birthday we were in the hospital for four days of intense education before we were allowed to be discharged. We had so much information crammed into our heads in such a short time but my son was still so young that he couldn’t tell us how he felt with highs, lows, or the in-betweens. When I met Alese I was grateful that she could translate how highs and lows feel for her. But I was shocked and dismayed to find how little information she was given upon diagnosis as an adult.
As we realized how powerful this connection and exchange was for the two of us, we decided we couldn’t keep it to ourselves, and the idea of jointly writing a blog was born. Sugar Rush Survivors is our attempt to share with others what has worked for us, what still frustrates us, and what lifts us up in our daily management of T1D. In addition to the blog page we manage the Sugar Rush Survivors presence on Facebook, Instagram, and Twitter.
I am grateful for the opportunity to speak on Juicebox Podcast and write on Sugar Rush Survivors adding my voice to the many others in the DOC to say, “You are not alone!”
Blog: www.sugarrushsurvivors.com
Facebook: https://m.facebook.com/SugarRushSurvivors/
Instagram: https://www.instagram.com/sugarrushsurvivors/
Twitter: https://mobile.twitter.com/contact_srs
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.
