Diabetes Mine Patient Voices Contest: http://skj.co/pvoices15
The Diabetes UnConference: http://skj.co/dunconf
Diabetes Hands Foundation Scholarships: http://skj.co/dhf15
Diabetes Scholars Foundation: http://skj.co/scholarsconf
Scott’s Sweepstakes – montKiddy Gift Pack!
Open to residents of Canada only!
That’s right, Canada! This one’s just for you!
EIGHT lucky winners – enter today! Entries accepted until 11:59 PM CT on Monday, April 27th, 2015.
Today I’m sharing a post from Rick about THE BETES Organization. Their mission is to help you feel better about the hard stuff, and they help people, families, and caregivers understand the meanings of chronic illness in their lives through a unique, playful, and un-scary method. Also, sock-puppets. 🙂
When Scott and I talked about writing this guest blog about ‘the BETES‘, he didn’t have to invite me twice. It’s such a thrill because ‘the BETES’ means a great deal to me and I hope it will come to mean a great deal to you as well.
The BETES Organization (thebetes.org)
A few months ago I wrote a blog post about my encounter with ‘The BETES’ Organization. I hope you’ll read it as an introduction to this post (here’s the link again). If you do you will find that I was able to visualize what diabetes looks like to me. I found that sometimes diabetes is docile other times it rages. Based on the response to that blog post, I believe my feelings about diabetes are more common than not.
People who engage in a BETES program find an active way to confront the emotional hurt of diabetes. After we participate, we are left with a tool to begin that confrontation. Those of us (both young and not so young) can use that tool and the ongoing support of The BETES experience to complement existing diabetes education efforts led by doctors, diabetes educators, mental health professionals, and most importantly by you and me – the people with diabetes.
Diabetes is often like a monster hiding under the bed. It gets worse the longer one chooses not to confront it. I liken it to socks under the bed. When my sons were young I had to chase monsters that hid under their bed. Invariably those monsters turned out to be socks. But as every parent knows those sock monsters are very real for our children until they are found and confronted. So too are the emotions that go along with diabetes. Emotions related to diabetes are always evolving as they expand and contract. But no matter how small the concern might be, it has been my experience that they always come back unless we develop the emotional resilience to overcome and keep them at bay. ‘The BETES’ Organization helps people with diabetes develop the resilience to handle the emotional impact of diabetes.
When my wife Sheryl and I chose to support ‘The BETES’ Organization with our money and time it was with the hope that we would help people with diabetes and our wonderful type 3’s confront the emotional impact of our shared disease. As a former monster chaser in my son’s rooms, I know that getting the first sock hiding under their bed is just a start. In fact it seemed for a while like I had to chase a sock out from under the bed almost every night until my sons found the courage to manage their own monsters.
Now of course both of my sons are expert sock chasers for their children. They have learned to not let monsters get out of hand. They can do this because their mom and I helped them learn to confront them.
My Diabetic Monster
‘The BETES’ Organization helps us to confront our diabetic monsters. Yes these monsters are very real. Even as an experienced monster hunter for my sons, I was still incapable of confronting my own diabetic monster. It took much help from trained therapists and my family but today I have the resilience to confront that monster when it rears its ugly head. My own journey to resilience includes the questions posed when I encountered ‘The BETES’. The experience was cathartic; it gave me a chance to share with words and images what diabetes looks like. My wife said those words offered her a viable understanding of what diabetes means to me and as a result to her.
Please consider contributing to ‘The BETES’ because your financial support will make it possible for us to launch programs that will help build emotional resilience to confront and understand their disease. With your help our immediate goal is to provide ‘The BETES’ program to 10 diabetic camps in North America this summer. Today we need your financial support to deliver ‘The BETES’ uniquely engaging and powerful programs to the campers, the parents, and the camp counselors across the nation to facilitate a program of empowerment, community, and connection that fosters a path of true joy.
Even small contributions go a very long way. Help us confront the monster. And take it from an experienced monster chaser: when we act together we can put the emotional side of diabetes in its place.
You can make a tax deductible donation to ‘The BETES’ here:
Thank you, Rick! Learn more about Marina and some of the wonderful work she and The BETES Organization is doing with this quick video:
I am thrilled to introduce Joe. He came all the way from Germany to attend the very first Diabetes UnConference and asked if I could help him share his experiences. I’m absolutely honored, Joe. Take it away!
6,000 miles for just two days
A lot has been written about the first Diabetes UnConference already, so I want to focus on the view from the outside, from the perspective of a German participant, and share what made the UnConference so valuable for me.
The idea of visiting the Diabetes UnConference inspired me from the very first moment I read about it. The only problem was that it was in Las Vegas whilst I live in Germany – about 6,000 miles away!
Welcoming and Open
Even though a lot of the attendees knew each other – either personally or from the DOC (Diabetes Online Community) – I felt like I was part of the group from the very first moment. There were no isolated groups from people knowing each other already, separating from the rest. And everybody was always open to integrate others into their discussions. This openness was something new to me as Germans tend to be more distanced – at least at the beginning – and it has never been so easy for me to integrate without already knowing somebody.
But the biggest surprise for me was the intimacy I found at the Diabetes UnConference. Not only in small, personal talks, but also during session in the main room with almost 100 people. So many offered a look deep inside their heart, maybe allowing a deeper look to other attendees than they allow even to their own partner. This was something I did not expect and I will not forget.
Technology and Access
There are also technical differences between America and Europe. As Europeans we always expect the Americans to be way ahead on all technical issues. But I found out that, at least concerning diabetes technology, this is not always true. We had the Animas Vibe long before it was offered in the USA. And the Abbott FreeStyle Libre Flash Glucose Monitoring system has been driving diabetics in Germany crazy with excitement for more than three months, whilst the rep from Abbott USA was not even allowed to talk about it. On the other hand, Americans are enjoying the Dexcom Share receiver which will not be available in Europe at all.
I flew over to Vegas with little more expectation than to meet people I’ve only read about in their blogs. But what I experienced during the two days of the Diabetes UnConference was so overwhelming that I feel the strong desire to return in 2016.
6,000 miles is quite some distance, but the trip was worth every single mile. Thanks to Christel Marchand Aprigliano, the facilitators and all attendees for letting me be part of the group from the very first moment.
Joe, thank you for taking a risk and coming! I’m so glad you felt welcomed, valued, and respected, and that you enjoyed the experience. You added so much perspective and value to everything, and helped make the Diabetes Unconference a success for all of us.
diaTribe is one of my favorite organizations. The quantity of high-quality work that comes out of their office blows me away.
If you can, I also encourage you to financially support the diaTribe Foundation. Can you imagine diaTribe on steroids? 🙂
There are two articles from a recent mailing that I want to share that focus on diabetes and kidney disease/kidney health.
Bringing Metformin to More Patients
In this article Kelly Close talks about new research published showing metformin is safe to use for many more people, especially those who are restricted because of kidney function.
Her article also mentions additional research on possible benefits of metformin use in other populations, including an interesting JDRF funded study on metformin & type 1 diabetes.
I take metformin and I’m excited to see interest in learning more about its benefit in type 1 diabetes.
I’m happy to see the PERL study getting more attention, and I appreciate diaTribe spreading the word.
I’m a fan of Dr. Michael Mauer, co-principal investigator, because of his care for me during a previous study (RASS), and would love to see he and Dr. Alessandro Doria (co-principal investigator) meet their recruitment goals quickly.
One of my favorite things about diaTribe is context.
With a great understanding of the overall diabetes picture, the diaTribe team is able to explain what a win for the PERL study means for us.
In this case, Leda & Alex talk about a couple of things that go beyond study outcomes, specifically the innovative approach using remote study locations and how future diabetes research funding may be affected.
Please read diaTribe’s article to learn more.
Thank you, diaTribe!
There’s a really cool feature of the Asante Snap insulin pump that I don’t think people know about. Here’s a quick video about it.
*Disclosure: I have a business relationship with Asante Solutions.
Pretty cool stuff.
When was MySpace? Hold on, I have ask Moses…
Over the years, TuDiabetes has brought so many wonderful people into my life, so many smiles, and so many incredible memories. Numerous friends around the world, and even more locally. I’m forever grateful.
Leadership, Trust, and Great People
Manny has assembled a team of amazing people, both on staff at DHF and on the Board of Directors (and in many other supporting roles). I know almost all of them personally, and those I know, I trust completely.
Melissa Lee has been named Interim Executive Director. I admire her for many reasons and wholeheartedly approve of her for the role and responsibility.
The team will function just fine.
But Technology Won’t Stand Still
Last year I had to replace one of our televisions. The old TV was big. Not big in regards to screen-size, it was a modest 29″ set, but just big – one of those boxy models from ten years ago. It was heavy and really hard to carry. I almost needed a second person. It exhausted me, and my back muscles were sore for days.
Our new TV is a sweet 32″ set. I know – I’m living the life of a king with an entire 32-inches. 🙂
It weighs less than a third of the old one, takes up a fraction of the space, and I could almost carry it under one arm. And get this… it even has a HDMI port so I can connect modern devices to it.
With the old TV I just accepted that I couldn’t watch HD quality shows or connect modern devices, and now I take those features for granted. It’s actually amazing when I stop to think about it.
And it’s a great reminder that technology advances, and almost unknowingly, our expectations do too.
Catching Up & Keeping Pace
And tech changes often, doesn’t it? While it sometimes takes getting used to, it’s almost always a good thing. The changes usually make things easier to do and produce better results. Now I’m streaming HD quality shows via my Apple TV, and loving it.
With this in mind, I’m very excited to hear that TuDiabetes is migrating to a new system.
Why am I excited?
- Did you know that the best way to find something on TuDiabetes is to leave TuDiabetes and search for it on Google? That makes absolutely no sense. With the new TuD, searching will work so much better.
- On the current system, visiting TuDiabetes from a mobile device is difficult. Websites must be mobile friendly in 2015. I won’t talk about what happens to websites that aren’t… On the new TuD, interacting while on a mobile device will be so much better
- Maybe most importantly, the new TuD backend will allow DHF to keep TuD up to date with the fast-moving technology standards. This might not seem like much at first, or from an outside perspective. But if I may share my opinion as someone who’s run a diabetes blog for over a decade, this might be the most important piece. This will allow DHF to transparently keep pace with your ever-evolving expectations. In fact, if done right, you won’t even notice. 🙂
There For You
One thing that is certain through the transition is Diabetes Hands Foundation has you, the diabetes community, at the center of everything they do. As long as I’ve known them, that has never changed, and I believe it never well.
Change is often scary. But Change is also often exciting, and that’s where I am with the TuDiabetes migration. I’m excited!
I urge you to trust these people who have taken such good care of you over the years. Lean into this change with them.
There are three things you can do to help them make it what you need:
- Dive in with both feet (once they launch – expected in March).
- Give yourself some time to get used to the new digs.
- And offer constructive feedback when appropriate.
What exactly is a NeedleBay system? Allow me to demonstrate…
These things are pretty cool and I’ll definitely use one when I travel.
I think it’s really awesome of NeedleBay to offer so many (25 winners!) in support of Scott’s Sweepstakes, and I’m excited to get these out to you. Sweepstakes ends on Monday, February 16th at Midnight. Enter now!
It’s a beautiful gift to give, and to receive!
Lack of access to insulin is the most common cause of death for children in many countries around the world. You can change that.
Five dollars is enough for Life for a Child to provide a month of insulin to a child in need. It’s no coincidence that the cost of a Valentine’s Day rose is about five dollars.
Spare a rose, save a child. It’s that simple.
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