Brain Dumps.

I’m back after spending a few days in Charlottesville, Virginia with The Great Spousal Unit. It was a nice trip with great weather, and other than my surgery, it was the first extra time off I’ve had since March. Ahhhh… I feel rested. Here are a few random brain dumps to begin the week:
 
 
– Looking for more artificial pancreas news? TuDiabetes will be hosting a discussion with three members of the new Type Zero Techologies team on Thursday, July 30th at 1:00 pacific time (US). That’s 4:00 in the afternoon on the east coast, and 9:00 p.m. in London. Learn about the InControl, InControl Advice, and InControl Cloud solutions that the folks in Virginia have been working on. #WeAreNotWaiting, and #TheyHaveBeenWorking. Find out more about what they’ve been working on, Thursday afternoon. CLICK HERE for more information.

– Registration for the Diabetes UnConference is happening right now! 2016 will include two new and important things: 1) There will be a western UnConference (again in Las Vegas), and an east coast UnConference in Atlantic City; and 2) Each UnConference will include sessions specifically for the spouses, significant others, etc. who live with us as we live our lives with diabetes. So, you have date and location options, and you can bring your Type Awesome too. This is a big deal, and I really hope you can be there either in Las Vegas next March, or Atlantic City next September. Make your plans now. And CLICK HERE to register. What are you waiting for?

– It’s amazing how your BGs go crazy when you travel. That’s because nearly everything you’re eating is some measure between general processed food and high carb crap, or both. I felt like I was throwing insulin at my numbers all day Saturday, even though one of my meals was no carb, and an evening snack was no carb too. I still woke up on Sunday morning at 149 mg/dL. Love the travel, hate the BG effect.

– On the other hand: Would anyone like a squash from my garden? Or maybe two? Or three? I am currently overwhelmed with squash. This situation caused Maureen to make the dreaded “squash casserole” when we returned from Charlottesville. I’m not a fan, though I love to grill it along with other summer vegetables. But right now, I’m feeling like I’d like to go a few weeks without even seeing another squash. A good problem to have, I guess.

– Finally, for those who might be wondering: I’m now about a month and a half beyond knee surgery, and I can tell you that my progress has been slow. I feel like it’s improving every day, but in teeny, tiny increments each day. So while I’m seeing noticeable improvement week to week, I’m not really able to tell the differences on a day to day basis. Still, progress is progress, and I did well walking around the University of Virginia campus last weekend. Can’t wait until I can get back on my bike.
 
 
Have a great Monday. Heard anything new recently? Let me know!
 
 
 

Diabetes By The Numbers: Bea Sparks continues the conversation.

“Like anyone else, I want to bee seen, first and foremost, as a human being… as a person.”

So… I touched on the subject of how we react to issues that People With Diabetes face in advertising and media in my last post.

Bea Sparks lives with Type 2 Diabetes. I live with Type 1 Diabetes.

In the next episode of Diabetes By The Numbers (now available on iTunes!), Bea brings her unique and important voice to the conversation. It’s so good and so meaningful, in fact, that I broke my original ten minute rule and just included the entire sixteen minute talk.

Together, we riff on the subject of how we, all of us living with diabetes, can work to include rather than exclude when we respond to stigma and shame that others try to lay on us. Trust me, you will feel the power of Bea’s convictions coming right through your listening device.

The quote from Bea at the top of this post is just one of the many golden nuggets included. Feel free to add your nuggets below.

DBTN

Reference Material – Click below for more information on this topic

Bea Sparks writes at the blog Cranky Pancreas:
http://crankypancreas.com

She also writes at the blog she and other Type 2s share called The Type 2 Experience:
http://TheType2Experience.com

The Ted Talk that Bea mentions in our discussion is right here:


 
 
 

How to react? How not to react?

For the benefit of anyone reading this months down the road:

CrossFit, the fitness company, posted a tweet that was particularly offensive to People With Diabetes. It was wrong, both in its tone and its wording, and because its statement had absolutely nothing to do with actual, you know, facts.

After this tweet went out, members of the diabetes community did their best to show their outrage at such a gutless attempt to guilt people into working out using their program, and shame People With Diabetes. Which brought out more ridiculous responses from the CrossFit CEO. Stupid is as stupid does, I guess.

The biggest diabetes organizations in this country got involved too, posting their own social media messages in response. For the most part, I was happy to see this. It’s good to know that when someone tries to hurt you via social media, JDRF, ADA, and others have your back.

But… and you knew there would be a but… some of the reactions were less than stellar from an inclusiveness point of view.

Is that too vague? I’m not sure I know how to put it into words. I think what I’m saying is, when I see a popular singing star, who lives with diabetes, tweet “Know the difference between types of diabetes”, I wonder what in the hell the different types of diabetes have to do with this issue in the first place. I’ve gotta admit… when I saw that one, I cringed a little bit. Why?

Because when we point out that my type of diabetes isn’t to blame for [fill in the blank], or we say this type of diabetes isn’t caused by [fill in the blank], we’re also implying that some other type of diabetes is to blame, or some other type of diabetes is caused by something that our type isn’t. Don’t believe me? Ask a Type 2 how they felt about some of the most vocal responses to the CrossFit issue.

And if you say, “Hey, well, that’s not what I meant”, I will tell you that it is not what you say, but rather how what you say is perceived that is important. Just ask my wife. And, Type 1s, when we make Type 2s feel this way, we are alienating 25 million People With Diabetes just in this country. 25 Million potential allies in the fight for better care, better access to medication, better acceptance by society. And, Type 2s, if you ever alienate Type 1s, you are alienating one of the most resourceful and vocal groups of diabetes advocates on the planet.

To varying degrees, we are all getting screwed in the media. To varying degrees, we are all getting more attention in the media. I don’t have the exact textbook way to respond to situations like these.

I just know that, like I’ve said before, it’s not always important to get there first with the most anger. It is extremely important that we respond to shaming and stigma-inducing ridiculousness by starting with what is in our heart… considering everyone affected by (and potentially viewing) the initial issue, and potential responses… and holding up a light to our shared humanity, and giving a voice to that shared humanity, in a way that protects us all, lifts our common cause to the highest plain, and encourages thoughtful discussion and meaningful change for the better.

I think that’s the longest sentence I’ve ever written.

There will be more discussion on this topic, coming on the next episode of Diabetes By The Numbers, here in a few days. As always, your opinion matters here too.
 
 
 

Be a joiner.

If you know me, you know I can be skeptical of new things.

But today, I am, in fact, a joiner. The truth is, I want to join good causes, with good ideas. That’s why I’m a joiner today. Today, I’m joining forces in a big way with the Diabetes Patient Advocacy Coalition. And I’m inviting you to become part of the coalition too.

DPAC is a non-profit, non-partisan group designed to bring a united, patient-centered voice to issues affecting all People With Diabetes. It’s right on their website:

”We envision a strong patient voice in diabetes policy. A voice that unifies advocacy to the shared challenges of physical and emotional care needed to live well with any type of diabetes.”

Sort of an e pluribus unum (out of many, one) approach to diabetes advocacy. And DPAC makes it easy… click here, do this, send it there kinds of steps that allow you and I to take part in advocacy efforts without giving up an entire weekend or even an entire weeknight. In fact, I was able to e-mail my congressman and U.S. senators in probably less than two minutes.

Let me ask you: What is most important to you?

– Is it getting Medicare to cover continuous glucose monitors for seniors living with diabetes?

– Is it ensuring safety and quality in all of the devices we depend on to keep ourselves alive each day?

– Do you want to make sure that glucose testing in a multi-patient environment (like hospitals, for example) is done in a safe and consistent manner?

These are just a few of the many issues that Diabetes Patient Advocacy Coalition is helping us bring to the attention of lawmakers. They make it easy to e-mail elected officials with unified language we can use (or update with our own story, if we choose to do so).

Getting the issues in front of us to see… helping us say, in one voice, multiple times over, that better care, better drugs, better devices, and better coverage for all of those things are important to everyone living with diabetes. That’s what Diabetes Patient Advocacy Coalition is all about.

So I urge you… become part of the coalition. Be a joiner like me.

Go to diabetespac.org, sign up, and add your voice to the chorus. Because we need you. Because I need you.

This is probably the one and only PAC I will ever be a part of. Why? Because your life, and my life, are too important not to take advantage of the opportunity to make our voices heard. Let’s not stop until our voices are heard. With you as one of the many voices.
 
 
 

Diabetes By The Numbers.

Today begins a new chapter here.

Owing to my (very long ago) past in radio and advertising, and the fact that I always thought it might be fun, I’ve wanted to do a podcast for some time.

In the last year and a half, I started to feel like that wasn’t going to happen. Because, let’s face it, there are many diabetes podcasts out there, and they are all good. Why create another program where I sit with someone for 45 minutes or an hour, talk about diabetes, and say “Thank you for listening”? If I was going to dive in, I needed to offer something different.

With the help of another patient advocate at the HeatheVoices conference in April, I was able to start thinking about it again (thanks Josh!). His idea: Make the podcast much shorter.

That’s what I’ve done. Each podcast should be ten minutes or so, focusing on diabetes news of the day. I’m not going to hold myself to that; if the content is important and it goes eleven or twelve minutes, so be it. Today’s podcast is right around ten minutes.

I worked hard to get a perfect sound from the room in my home that I’m recording from. To put it bluntly, that’s not going to happen, though you will be able to hear me and understand me. In addition, I’ve long realized that my voice is not exactly perfect, and after not speaking into a microphone for close to 20 years, I’m a little rusty. But I also realized long ago that the real success in endeavors like this lies in the personalities being interviewed.

A great example is today’s interview with Katy Killilea. She’s a superb writer and an engaging talker, with super advice about 504 plans for kids going to school with diabetes this fall. If you don’t know a 504 plan from Formula 409, listen to the podcast and click on the very helpful links below.

It’s called Diabetes By The Numbers (listen to the end… you’ll get it). Today is episode one. Just like this blog, I suspect that the podcast will grow and evolve over time, and a year from now, it may not sound anything like it does today. That’s the way things usually work when they work best for me.

DBTN

Have a listen. Do you have any good ideas for a future podcast? Want to be interviewed? Feel free to let me know.

And for the first time, let me say: Thanks for listening.
 
 
Reference Material – Click below for more information on this topic

Children With Diabetes – Sample 504 Plans

American Diabetes Association – 504 Plan Information

JDRF – 504 Plan Information

JDRF – 504 Plans in College

National Diabetes Education Program – Helping the Student with Diabetes Succeed: A Guide for School Personnel
 
 

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