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.
More great blog posts of Arden's Day
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.
You are about to read the most exciting grouping of sentences that an OmniPod user could ever wish to hear.
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.
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 and McCall
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.
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.
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...
... Until No One Sees It!
A1c Countdown: It's Endo Time
Endo time...
Only 24 hours before the American Diabetes Association announced their new A1c guidelines for children 19 years old and under, Arden was in her Endocrinologist office for her quarterly appointment. We missed her previously scheduled appointment in April because of an illness. At that time the Doc told us, "Arden's A1cs have been good for the last year and a half... let's just get back together in June".
Skipping a quarterly appointment made me feel strange but the three months seemed to fly by and before I could wonder what happened to the time, it was June and I was signing Arden out of school just like we have every three months for the past 8 years. It was Endo time. I found myself thinking about those numbers as I drove to the office.
"Diagnosed in August of 2006... first Endo appointment was in early September..."
Then I counted off the months. "October, November, December... December of 2006 was her second visit. Then four in 2007, 2008, 2009, 2010, 2011, 2012, 2013 - we just skipped April of 2014, so this is maybe, Arden's 32nd visit to her Endocrinologist.
This thought made my heart heavy until I remembered my recent trip to the Dominican Republic, and I was quickly reminded that there is an entire planet full of people living with diabetes and most of them can only wish that they were able to visit a doctor. I adjusted my thinking and instead of the number 32 feeling like an albatross, it started to feel like a life preserver.
I walked into Arden's 32nd Endo appointment with a fresh set of eyes. Arden however, was not in the same mindset - she was preoccupied, unusually nervous and she seemed just a bit unsettled. When I asked her why she said, "I think I get a blood draw today... I really don't want to do that". A few minutes after we got into the waiting room a nurse called our name and we were off. These visits have their own pattern. Height, weight, blood pressure and other vitals happen in a room thats no bigger than a walk in closet, then we head down the hall for a hemoglobin A1c test and blood draw when necessary. The nurse started with Arden's A1c, loaded the sample into the machine and then ushered us to an exam room, "No orders for a blood draw in the computer", she said. Arden was relieved but confused, "I always get a blood test in the summer", she told me as the nurse left the exam room. Then she smiled as if she had gotten away with something big. About a month ago Arden experienced serious and sudden needle anxiety while at a dentist appointment, this was new for her, and I never imagined that it would translate to her Endo appointments because while she doesn't enjoy the blood draws, she has never resisted them or been afraid.
After the nurse left the exam room we chatted about softball for a minute (Arden's 9 year old All Star team had just won their tournament the day before) and then I snuck back to the phlebotomists room to get an early peek at her A1c result.
Arden's A1c has been steadily improving for the past two years but this was our first experience with skipping a quarterly appointment and I was irrationally concerned that would mean an increase from Arden's last result of 6.7. When I arrived in the room, it was empty and there was about one minute left in the process... just enough time to get my phone out of my pocket.
Watch the ten second video before you read on - trust me.
My heart did a backflip when "6.2" appeared on the screen, a back flip. In July of 2009 Arden's A1c went from 8.5 to 8 when we switched from shots to the OmniPod insulin pump. In October of 2012 I blogged about the factors that I believed helped get us to her new best of 7.5. I remember just hoping for 7.4 in June of 2013 when Arden's A1c made a serious leap to 6.5. We stayed steady for some time around 6.7, and to be honest, staying steady felt like a bigger accomplishment than achieving a decrease. The decreases come as you make adjustments but who knows if they are anomalous... steady is, well, steady... it's balance, it's relief. I love steady!
That said, I'd be lying if I told you that 6.2 didn't make me wonder what a number that began with five would feel like...
Oh, and we did need to get blood drawn on this day, but that's a whole other story...
Arden does not experience significant or frequent lows. Achieving a desirable A1c under those conditions is not healthy nor an indication of health. Steady is much better than fluctuations that "trick" you into feeling good at A1c time. Please remember to read my discloser, it will remind you that I have no medical training and this site is not meant to replace your doctor because my words are not meant to be advice. Arden's Day is just a blog.