Scott Benner 9/11/14 Scott Benner 9/11/14

Diabetes Breaking Bad

I wrote about this the day after it happened a few months ago but haven't posted until now.

My story about last night begins one week prior... it is an epic opus that answers the age old question, "Will diabetes ever get easier".

My son Cole and I left for Virginia early last Friday morning to attend a four day baseball tournament. The ride took nearly six hours and the games began soon after we arrived. It was during that road trip that I first notice how different the weekend would be without Arden with me, you know, because when I got hungry and reached for a snack... I realized that I didn't pack any food for the trip. If Arden was with me – I would have had enough food to feed ten people.

The next thing I knew I was at a rest stop paying $400 for pretzels and an iced tea, it occurred to me as we checked out that this was the first time that I didn't experience any sort of separation anxiety about leaving Arden in another person's care. Don't get me wrong, my wife is an amazing D-Mom, but I still worry. You know what? It's not worry, it's more a feeling of shirking my responsibilities. This was the first time that I didn't feel like I was passing off my responsibility, it was the first time I didn't feel guilty. "Maybe", I thought, "maybe diabetes is getting easier?".

Kelly and I spoke once during the four day trip (Cole's team came in second place!) about diabetes, Kelly was handling things perfectly and really just needed help deciding if a high BG she was battling with was food or pump related. When she called, I felt like a consultant.

When we returned home Monday night it was almost eight in the evening, thirty minutes later Kelly and Arden arrived at the house from Arden's softball practice. Kelly promptly packed a suitcase and left for a three day business trip. We almost didn't see each other except to pass on the details of Arden's BGs.

The next morning I was unprepared for reality and still pretty tired from all of the driving I did on Interstate 95 so I took the kids to a morning movie. We sat down with a little popcorn, ready to enjoy the show. Then things broke bad...

Arden's insulin pump experienced an error and shut down about half way through delivering her popcorn bolus. I took a deeeeeep breath and said, "No big deal, just eat a little less popcorn and I'll keep an eye on you BG with the DexCom receiver". I remember thinking that we could stay for the movie and Arden could snack a little. I didn't want to drag everyone out of the theater and back home. Arden looked disappointed to begin with (and hungry) and she had brought a friend with her. Lots to consider. I reached into her bag for the DexCom receiver, and it never ceases to amaze me when this happens but, it also was having trouble operating.

I'm not going to lie, I recited a string of extremely offensive curse words to myself as I looked down at those tiny, glowing and useless screen.

Arden looked mortified and asked, "We have to leave, right?". I replied, "No way! I want to see the dragon movie, we are staying... just eat the popcorn really slow – like one piece at a time. I know that sucks but its better than leaving, we can go home after and take care of all this".

And that's what we did. Then we went straight home put on a new pump, changed the pesky CGM sensor and bolused like there was no tomorrow. Arden's BG was back to normal again in a couple of hours.

The next few days haven't gone much better. We have a couple of overused sites that need a break, sensors haven't been giving the best feedback and when I finish writing I have to call Insulet because Arden's PDM is causing her Pods to error every time I change the batteries. But none of those annoyances can hold a candle to last night.

Last night was one of the longest diabetes nights that I have ever lived through. Unexpectedly high numbers led to blousing that didn't accomplish much. Those boluses led to an injection, that led to a pod change and more bolusing... I didn't close my eyes at 6:30 am. It was the first time that I was glad that I missed 'Breaking Bad' when it was first on television because no show makes you not care how exhausted you are quite like 'Breaking Bad'.

Kelly is still away for work so the last I did before watching the sun come up was to send my son a text that read,

"Cole. Arden's BG was tough last night. I didn't go to sleep until after 6:30am. Please watch her CGM and wake me if you need to. Don't let me sleep past 11:30. Thanks!"

These last few days have been as unpredictable and taxing as I can recall and I'm fine. I didn't make myself nuts when I left Arden last week, I didn't overreact when shit went wrong, never felt scared at the theater or when I woke up this morning. It's just another day at the office but not because diabetes gets easier, it never gets easier – you just get much better at it (which is kind of the same thing but, you know, different).

Scott Benner 8/12/14 Scott Benner 8/12/14

No CGM, No Problem

I completed a rather exhaustive set of parent, user and creator interviews last week about CGM in the Cloud.

Arden turned ten years old in July but in softball years she is consider to be nine. 9u Little League all star play is a one tournament and done setup -- district play does't begin until 10u when it is then possible to play in a District, Section, State and finally Regional tournament (The World Series only exist at 12u).

Arden's team won the 9 tournament in our district and with that, softball was to be over.

Until she tried out for the 10u team and made it as a sub. Now you know, if you already didn't, that the "u' in the age bracket stands for "and under".

Arden's 9u tournament began in early June before school was over and they practiced for weeks before the Father's Day tournament. SO she had already been playing for a while when..

The 10u practices started just days later in June and on the evening of August 8th, the 10s played their last game. Three straight months of softball. There were practice almost daily and games when there weren't practices. It's been a mild summer here but at times the heat has been grueling. Blood glucose levels have been mostly stable during play but late night lows have been more common this year than in the past. We are handling it well.

With three games left in the Regional Tournament, oh yea by the way... they won the whole thing (Arden had the winning hit in the championship game). Anyway, with three games left in the fourth tournament Arden showed up at the field without her CGM. Too far from the hotel to go get it, we went old school diabetes and never missed a beat.

With DexCom we test after warmups which is about thirty minutes before the game begins and make any adjustments that are necessary. After that Arden uses hand signals (she holds up her fingers) about every two innings to let us know what her DexCom is reading. If there is an issue, we handle it.

Without DexCom we tested after warmups which was about thirty minutes before the game began and made the necessary adjustments (she needed a few carbs). After that Arden used hand signals (thumbs up or thumbs down) about every two innings to let us know how she felt. We tested before the fourth inning. There were no issues.

Why did I blog this non-story about not having Arden's CGM?

I completed a rather exhaustive set of parent, user and creator interviews last week about CGM in the Cloud (I'll be explaining CGM in the Cloud soon for those who aren't aware) and if I'm being quite honest, I'm still wrapping my head around all that I learned. So much good stuff there, between having better access to data and comfort for parents, but there's something about it that makes me uneasy and I'm trying to find the words to share that feeling without diminishing the joy that I felt hearing the parents talk about their peace of mind and the people who are using the data to better their health. But there is a conversation to be had about fear and I want to have it... just need to find the words.

Insulet and Dexcom Agree to Develop a CGM-Integrated Personal Diabetes Manager

You are about to read the most exciting grouping of sentences that an OmniPod user could ever wish to hear.

From Insulet.com:

This is the entire announcement from Insult. If you want the legalese and investor info, you can read it here.

New Insulet PDM Will Receive Dexcom G5 CGM Sensor Signals

BEDFORD, MA -- (Marketwired) -- 08/05/14 -- Insulet Corporation (NASDAQ: PODD), the leader in tubeless insulin pump technology with its OmniPod® Insulin Management System, and DexCom, Inc (NASDAQ: DXCM), the leader in continuous glucose monitoring ("CGM") technology, today announced their intention to allow information from Dexcom's 5th generation CGM system to be identified, received and displayed on Insulet's new Bluetooth-enabled Personal Diabetes Manager ("PDM"), currently in development.

This project expands upon the initial agreement announced in June to enable the Dexcom mobile app platform to integrate data from Insulet's OmniPod System. That platform will be the first of its kind to enable glucose and pump data to be displayed on a smartphone.

"We are pleased to expand our development relationship with Dexcom to receive and display Dexcom G5 Sensor data on our new PDM, eliminating the need to carry a separate CGM receiver," said Duane DeSisto, President and Chief Executive Officer of Insulet. "This collaboration furthers our shared vision of helping people living with diabetes by providing greater access to the data they need to make smart and effective decisions to better manage and control their disease."

"We are pleased to be back working with Insulet to bring our leading-edge technologies together to help people living with diabetes better manage their disease," said Kevin Sayer, President and Chief Operating Officer of Dexcom.

Scott Benner 7/25/14 Scott Benner 7/25/14

Interview: Miss Idaho Sierra Sandison #ShowMeYourPump

All any of us want is to be anonymous and in a world where different is often looked upon with fear, the people who want, need and deserve that anonymity sometimes have to stand front and center to get it.

A few weeks ago Sierra Sandison was a contestant in the Miss Idaho Pageant. She wasn’t a diabetes advocate or even a person who widely shared with her friends that she was diagnosed with type I diabetes at the age of eighteen. Much has changed since then.

Sierra was backstage at Miss Idaho during the first night of competition when she had a chance meeting with Miss Idaho’s Outstanding Preteen, 12 year old McCall Salinas. Sierra stepped out of her dressing room and heard these words, “Oh my gosh, is that an insulin pump?”

Sierra told me that her stomach “flip flopped” when she realized that McCall recognized her insulin pump for what it was. I thought, “Oh no, people are going to notice, I was hoping that it was little enough that no one would notice”.

Sierra’s second reaction to McCall’s words, “I got scared”, but then McCall quickly explained that she also had type I diabetes and that she didn’t use an insulin pump because "she was scared of what her friends would think and of how it would look”.

It was during this brief encounter that a diabetes advocate was born. Sierra Sandison, a 20 year old woman who was diagnosed with type I diabetes only two years prior, was about to make a decision that would change her life. She could disconnect from her pump when she took the stage in her swim suit or leave it on and help McCall to not feel quite so alone.

At the time that their exchange took place Sierra told me, “I had no idea that I would even make the top ten, let alone become Miss Idaho - but I thought, I have to do this for McCall”.

During the interview I mentioned to Sierra that I believe people become advocates when they realize that they care more for another person than they do for themselves. This was that moment for Sierra. When she left that conversation with McCall she was a different person, and that person didn’t want McCall to be worried about what other people would think.

It only took Sierra a second to decide that she was going to walk on stage wearing her insulin pump, “I have to do this for McCall”, she thought.

“It was really scary (to walk out on stage) but thinking about McCall gave me a whole new confidence”. Suddenly Sierra didn't care what the audience or the judges thought and the prospect of becoming Miss Idaho or Miss America became secondary.

When she came off stage McCall walked up to Sierra and said, “now I want to get a pump”.

Sierra “balled her eyes out” when she realized that something she had done helped another person to find the confidence to be him or herself.

If this story stopped here it would be amazing and completely worth sharing. It’s a story of two strangers who find each other by chance, both unaware of how much they are in need of the other’s support. A simple and beautiful story of humanity, empathy and the power of sameness. But social media had other plans for this moment and later when Sierra shared a photo of herself and McCall on Facebook, along with a brief description of how they met backstage and the events that transpired immediately after, Sierra found a community of loving people living with diabetes that she didn't know existed - and they had her back.

The outpouring of support that she received on Facebook prompted Sierra to share a different photo, this time of her walking on stage in her black bikini with her insulin pump on her side. This is the first time that she would use the hashtag #ShowMeYourPump.

In an instant 20 year old Sierra Sandison went from being a hopeful pageant contestant who got caught up in the desire to support a little girl, to the face of confidence and security for people everywhere who live with insulin dependent diabetes. Her image was about to inspire countless thousands to share pictures of themselves with their insulin pumps on social media. Sierra’s very unintended coming out party was suddenly and gleefully part of the ethos.

Now everywhere you look on Tumblr, Facebook, Twitter, Instagram, Google+ and the rest of social media, people with diabetes are showing their pumps to the world in an effort to become invisible. The chain of events is continuing on. Sierra’s decision to support McCall has become a phenomenon of strangers holding up their pumps in support of Sierra, and in support of themselves. We are witnessing humanity at it’s best, we are witnessing people whose desire to support a stranger is helping them to overcome the same insecurity that brought Sierra and McCall together.

Show them your pump, until no one sees it.

Today, because a little girl noticed and insulin pump on a strangers hip, people who live with diabetes are a lot closer to that goal. I told Sierra that my hope is that one day soon another girl will walk onto a stage wearing an insulin pump, and that no one will notice. No one will post a picture, ask for an interview or bat an eye. That’s the world I want to live in, it's the world McCall needs and the world that Sierra Sandison’s bravery brought us all one-step closer to… when she showed us her pump.

#ShowMeYourPump

#ShowMeYourPump Until No One Sees It

Almost instantly the hashtag #ShowMeYourPump was replicating all over the Internet, the diabetes community was retweeting, reblogging, liking and posting pictures of their own.

#ShowMeYourPump is everywhere! Instagram, Twitter, Facebook, Tumblr, diabetes blogs, news outlets - absolutely EVERYWHERE!

Less than two weeks ago Sierra Sandison was competing to be Ms. Idaho. When she walked out on stage in her black bikini, her insulin pump clipped to her waist, she had no idea that the image of her doing so was about to become a viral sensation. Later that evening, Sierra was Ms. Idaho, if you go back into her Twitter feed you can see the excitement, pictures and celebration that she was experiencing.

Photo from Sierra's Twitter feed. @sierra_anne93

Then she decided to post the picture of her in that black bikini, insulin pump at her side, on her social media platforms. Almost instantly the hashtag #ShowMeYourPump was replicating all over the Internet, the diabetes community was retweeting, reblogging, liking and posting pictures of their own. Later today I'll be speaking with Sierra for an Arden's Day interview that will also run on Huffington Post. In the meantime, get out your camera and show them your pump...