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.
What is the Juicebox Podcast
Many months ago I tried to write about a topic here on Arden's Day and no matter how many times I wrote the piece, it never came out in a way that I was comfortable with.
One time the message was muddled, the next pass lost the tone and once I actually thought I had it but used so many words that I genuinely felt concerned that you wouldn't read it all.
Eventually I gave up and never published my thoughts on the topic even though I believe them to be cogent, important and clear - just never could write them down. Then one day as I was lamenting my failure of communication to my wife Kelly I said, "If I could only tell them (you are 'them'), if we could only talk... I know I could be clear on the topic".
That statement gave birth to the Juicebox Podcast!
What is a podcast? A podcast is basically a radio show that isn't on the radio, instead it is captured on an Mp3 and made available for streaming or download. My sound files are being distributed through iTunes, Soundcloud, my blog and Stitcher. Though there are many other podcasting platforms, these are the ones that I've opted to start with. When the listener subscribes on the platform of their choice they will be notified each time a new episode arrives. I listen to many podcasts and my hope is to add to the landscape in a positive way.
I began planning my podcast by imagining that I would only record a show when I "needed" to for clarity sake but then I thought about the interviews that I write and how interesting the conversations are with the subjects and wanted to share them as well. As I pondered how to structure the show it occurred to me that I could use the audio format to finally accomplish something that I've been wanting to do for some years - revisit the journey that I've taken while writing Arden's Day so that I could make sense of the things I was going through and relate them to you in a way that you would find helpful. And so that's what I'm going to do.
I wanted episode one to be an explanation of the show's intended path but I was surprised with the opportunity to interview Adam Lasher from American Idol and needed to adjust my plan. So episode 2 is really episode 1... but you'll figure it out.
So far I've interviewed Ryan Reed the 21 year old NASCAR driver and person with type 1 about his first NASCAR win, his diagnosis and how he overcame a doctor telling him that he couldn't race with type 1.
I spoke about how texting with Arden led to lowering her A1c (it's currently 5.9!).
Had a conversation with Adam Lasher from this season's American Idol (He's the guy who performed with his Dexcom receiver clipped to his guitar).
and more...
I'm hoping that you'll give it a try...
I'll be talking with you about type 1 diabetes, parenting, diabetes technology and have interviews with cool people that live with type 1. In addition, I'm very excited to explore Arden's Day from the beginning and find out what worked, what didn't and what I could have done better (plenty I'm betting). Oh and my super not-so-secret other hope is that you'll want to come on the show and talk about type 1 parenting with me. Email if that sounds like something you are up for!
Okay, if you are a podcast enthusiast please subscribe on your favorite platform, new shows are weekly on Tuesdays. If you are still wondering what a podcast is... give it a try. You can listen in the car, at the grocery store or in the kitchen (I listen to mine in the shower). Any questions, just ask!
Follow Juicebox Podcast on Twitter, Facebook and Instagram @JuiceboxPodcast and online www.JuiceboxPodcast.com. RSS feed for the podcast is here.
Adam Lasher on American Idol
It was only a week ago when Adam Lasher first appeared on American Idol. Lasher's pre-audition interview with Ryan Seacrest revealed that he is the nephew of guitar legend Carlos Santana, but his famous Uncle was just the beginning of what would be a rather strange and wonderful audition.
The next three minutes were a whirlwind of oddities that culminated in Adam performing his original song 'These Shoes' and a golden ticket to the American Idol Hollywood round that airs tonight on Fox.
Adam wore a bright blue headband that appeared to be more functional than style oriented. His face and dark beard instantly reminded Jennifer Lopez of Tonight Show host Jimmy Fallon, her comments must have made it back to New York because the next day Fallon was dressing up like Lasher on his show.
Adam and his Uncle Carlos courtesy of AdamLasherBand.com
After the Jimmy Fallon frivolity came to an end Keith Urban asked, thinking it was Lasher's phone, about a small case clipped to his guitar strap. It wasn't a phone in the case, rather Adam has type 1 diabetes and was wearing his Dexcom continuous glucose monitor (CGM) so that he could watch his blood sugar level.
When the time came for Adam to play the judges finally realized that the thumb on his playing hand was broken and wrapped in what Harry Connick Jr. called, "a raggedy-ass lookin' cast" but non of that mattered because soon, despite his broken thumb, tossed hair, type 1 diabetes and an only so-so Fallon impression, Adam Lasher's music is revealed to be as soulful as it gets and he earns a ticket to Hollywood Week.
Tonight a rabid base of Idol viewers, many who live with type 1 diabetes in their lives, will be cheering for Adam to move on to the next round.
You can hear Adam on The Juicebox Podcast talking about his Idol experience, diabetes, how he broke his thumb and much more.
Update
Adam performed 'Wicked Games' during Hollywood week and was put through to the next round! Check out the video... stay until the end when Harry Connick Jr. says, "I think he's a super star... I think he's got something". Good luck to Adam as he competes!
A REPURPOSED DIABETES WORD
Arden got a new puppy in mid-December and that was a huge deal around our house because I had been steadfastly saying no to more pets for years.
Then one day I softened on the topic but not because I was worn down by constant badgering - though there was constant badgering. I softened because of something Arden said to me during one of her impassioned, "I need a puppy" pleas. I could see in her eyes that she was making more than just an emotional decision when she asked for a pet, something in her had matured.
it was time for me to say yes and so I relented and the puppy search began, in earnest.
After an exhaustive research process Arden settled on a French Bulldog/Boston Terrier mix that some affectionately refer to as a Faux Frenchie. We found a lovely woman who breeds the mix and awaited his arrival.
After we chose the puppy every waking moment in our home was spent in deep contemplation of a proper name. Arden looked in baby name books and online, we mused around the dinner table, and once seriously considered naming him after a boy that Cole plays baseball with – because of the way that the boy's mother says his name. So much fun to imitate!
I pressed hard for a few days to name the puppy Heisenberg. Though Arden has no knowledge of 'Breaking Bad', I liked the name a lot and tried to explain that if she named him Heisenberg we could also call him Mr. White, The One Who Knocks, The Danger or Walter - she didn't much care for my argument but did actually consider my request for a hot second.
One afternoon Arden walked into the house after school and calmly told me that she had chosen a name for her puppy, she was going to call him Basal.
At first I didn't like the idea because we already hear, say and think diabetes related words so much. One of the things I look most forward to if a cure is ever found, is not saying 'diabetes' ever again. I must say, think, write or speak that damn word hundreds of times a day. But Arden loved the name and so I smiled and said, "GREAT name, we'll call him Basal!".
It's only maybe six weeks since Arden choose the name and I am so happy that she did. Repurposing that word and applying it to something so innocent and adorable has reprogramed my brain. No longer do I clench my teeth at the thought of a high BG that needs more background insulin or contemplate with worry if shutting Arden's basal delivery off for an hour will stop a low blood sugar.
Now Basal means this...
Basal - Almost 5 months old
The lesson in all of this is simple in my eyes, we CAN teach ourselves not to react to how type 1 diabetes tries to make us feel.
Following in the spirit of Arden's puppy name choice and what it taught me, I've named my new podcast after another word that I just hate saying in the hopes of repurposing that word as well.
I hope that you can check out and subscribe to The Juicebox Podcast, my new type 1 diabetes parenting show. It is live on iTunes, Stitcher and Soundcloud, please subscribe at www.JuiceboxPodcast.com and give it a try.
I'm off to prep for my first interview for the podcast, you are going to love the guest - Adam Lasher from American Idol!
Dexcom G4 Platinum Continuous Glucose Monitoring System WITH Share
Dexcom receives FDA approval for their G4 Platinum Continuous Glucose Monitoring System WITH Share, "faster than expected" and that's great news for tons of reason.
On Monday January 26, 2015 Dexcom announced in a press release that their G4 Platinum Receiver with Share built in was approved by the FDA in under 120 days (Thank you FDA!). Later in the day Dexcom held a webcast to make the announcement. I've listened to the webcast, pulled out the most interesting parts and included them for you here in my third and final microphone test before my new podcast officially launches.
If you listened to the audio you just heard that there is some crazy exciting news coming out of Dexcom's headquarters this week that's going to benefit everyone who uses a Dexcom CGM.
If you weren't able to listen here are just a few details from the announcement plus links to Dexcom's complete press release and webcast.
- The Share receiver is anticipated to ship to new patients in early March 2015.
- All patients who purchased a Share cradle will receive a free upgrade to the Share receiver.
- All purchasers of a G4 Platinum receiver from January 1, 2015, until the Share receiver is shipped, will receive a free upgrade to the Share receiver.
- There will be a low cost cash upgrade to the Share receiver for those patients who are still under warranty with their existing receiver.
- The Share receiver will be compatible with future generation Dexcom sensor systems.
The entire press release is here
The entire webcast is here
