This one looks different.

It’s November 14 again… World Diabetes Day.

To many of us, the thought of that seems to be a mixture of “meh”, and “sorry… too overwhelming”. Blame it on a disease that produces more than its fair share of burnout, therefore burning us out before Diabetes Awareness Month is even halfway over.

I understand that. Regardless, I was kind of excited about where our cause was. Before our recent election, I had written a quite different blog post from what you see below. Now… well, this World Diabetes Day looks different.

Sure, in the last year, we’ve seen FDA approval of Medtronic’s Minimed 670g. I’ve already spoken with a parent that was so excited about her son’s clinical trial experience on the device she’s already looking forward to the sleep she won’t be doing without soon.

In addition to Medtronic, there are several groups working feverishly on true closed-loop artificial pancreas solutions. Bigfoot Biomedical, Type Zero, Beta Bionics, and several others had us all comparing possibilities and looking forward to our own restful hours spending less time managing our numbers, more time enjoying life (or getting shuteye).

Pause for a moment and consider how far we’ve come in just the past five years. I actually let myself imagine the kind of advances we might see in another two or three.

I was equally excited about the increased scrutiny being given to insulin pricing nationwide. The crescendo of outrage hadn’t bubbled up from nowhere. Diabetes advocates have been sounding the alarm on drug pricing for some time. It was great to see that other voices were finally taking notice.

(image courtesy of Twitter)

(image courtesy of Twitter)


Many of you are viewing this because you consider yourselves part of a larger online diabetes community that supports, coalesces around important issues, and encourages others living with our condition to stand up for themselves and help others to do the same. That didn’t come from nowhere.

In person events like the Diabetes UnConference, online happenings like the weekly DSMA Twitter chats, webinars from countless diabetes advocacy groups, a plethora of diabetes podcasts, and much more underscore the fact that ours is a community that has face-to-face gatherings and every social media channel churning away for the better good of all people living with diabetes.

And people are taking notice, like the American Association of Diabetes Educators, and countless device and drug makers that reach out to us for our input. Five years ago, would you have imagined patients having a real presence at both the ADA and AADE conferences? We, as patients and advocates, were making our mark.

The U.S. Food and Drug Administration had taken the time to convene multiple online and in person gatherings to help make patient concerns (and sometimes, patient and corporate concerns together) a part of their research on drug and device efficacy. That’s not where we were a few years back, is it?

But… we’re living in a different world this World Diabetes Day. In a little over two months, it’s quite possible that millions of Americans will lose their right to healthcare coverage. Millions of voters made a clear statement to say that they’re okay with that. For the record, I am not, and will never be, okay with that. My friends and I have been betrayed by half of America, and it hurts me to my core.

I will take solace today by joining the World Diabetes Day chat for a few hours on Twitter. But…

If you’re burned out on all the Diabetes Awareness Month / Must Do Something Because it’s November, I get it.

If you feel like you and your condition have been given the middle finger by half the electorate, I get it.

The truth is, we have a lot to be proud of this World Diabetes Day. But this one feels different. I don’t have answers or ideas for you yet. I’m still trying to blow air back into my balloon. But know this: I will never turn my back on you.

And: I support you… no conditions.

Join us for #WDDChat16!

So, it’s November and all. You know what that means:

24 hour #WDDChat16 Twitter Chat November 14!
wddchat16
Let me be the first to remind you that Monday marks another World Diabetes Day, and among all the other happenings around the world, much of the world will be checking in to the diabetes talk on Twitter. Some people, like me, multiple times.

If you’re a seasoned veteran of the #DSMA chats, terrific. Consider this your friendly reminder. Just remember to use the #WDDChat16 hashtag for this special event. We’ll see you Monday.

If you’re not familiar with the Twitter discussion, or if it’s been a while and you don’t remember, here’s the deal: each hour of the chat will have a different topic, and will be moderated by a different host. I will be your moderator from 8:00 a.m. to 9:00 a.m. (EST in the USA). The topic: My Diabetes House. My Twitter handle: @StephenSType1

Each hour’s chat will include several questions asked by the moderator, and participants are encouraged to reply. And chat with other participants while they’re at it. For a list of the WDD hosts and topics, CLICK HERE.

If you’re new, don’t be discouraged. The #WDDChat16 chat will be a fun atmosphere that welcomes everyone living with and affected by diabetes, regardless of your type of diabetes, regardless of how long diabetes has been a part of your life. It really is the fastest hour of the week when the chat happens at its regular time on Wednesday nights from 9:00-10:00 (EST). On World Diabetes Day, the lively conversation will continue for 24 straight hours.

The moderators on Monday include some of my favorite People With Diabetes. If you don’t already, I encourage you to get to know them too. People like Christel Marchand Aprigliano, Anna Norton, Chelcie Rice, Kerri Morrone Sparling, Kelly Kunik, Chris Clement, and others. Over the years, I’ve seen participants from every continent except Antarctica.

Don’t have a Twitter account? No problem. Go to twitter.com and create yours in about 15 seconds.

To join the chats, follow the #WDDChat16 hashtag on Twitter, or use one of the several hashtag feed web sites that will link with your Twitter account. That way, everything in the chat just keeps flowing, and you also have a space on the same page to Tweet away yourself. I like to use this one: http://tchat.io/rooms/WDDChat16

Then just jump in and enjoy the conversation!

If you’re still not sure how this all works, CLICK HERE and send me an e-mail. I will help you get going or answer your questions.

This is truly one of my favorite things about November each year, and like other years (this is my 5th!), I hope you will join me during the 24 hour (including 8:00-9:00 a.m.) World Diabetes Day Twitter Chat sponsored by Diabetes Community Advocacy Foundation.

Special thanks to Cherise Shockley for coordinating the chat every year, and for her tireless efforts to bring our community together, one conversation at a time.

Diabetes By The Numbers: Mariana Gomez covers healthcare in Mexico.

Diabetes By The Numbers is back, with the first in what I hope will be a series of episodes in which I’ll investigate healthcare in countries other than my own.

Helping me get started is Mariana Gomez. Mariana is a super diabetes advocate, through the diabetes community in Mexico City where she lives, as a writer at her personal blog, dulcesitosparami.com, and as Community and Social Media Assistant for the Hispanic Market at Diabetes Hands Foundation.

In addition to that, she’s a licensed practicing psychologist. And oh, by the way, she’s been living with Type 1 diabetes for over 30 years.

Mariana is uniquely qualified to discuss diabetes at any time, and certainly qualified to discuss the state of healthcare for those living with diabetes in Mexico.

As I said, this is the first in what I hope will be a series of interviews on healthcare from a number of countries. If you’re living in a country outside of the USA and you’d like to talk about healthcare where you live, please send me an e-mail at happymedium[dot]net[at]gmail[dot]com and let’s talk.

DBTN

Reference Material – Click below for more information on this topic

Mariana Gomez is Community and Social Media Assistant for the Hispanic Market at Diabetes Hands Foundation:
diabeteshandsfoundation.org

You will often see Mariana at DHF’s Spanish-language community site:
estudiabetes.org

Mariana has a wonderful personal blog:
dulcesitosparami.com

My Diabetes Platform for the election.

Welcome to Diabetes Awareness Month. And since this is also a big election year (and we generally elect candidates and vote on issues in November), let’s merge those two together for the sake of this post.

Oh yeah, I’m going there. For the sake of myself and my friends with diabetes, I’m going there.

I fully recognize that there is more than one way to get things done, and I’ve seen countless examples over the past eight years that there is more than one way to not get things done. Rather than going down party lines, I thought I would lay out my own framework for a more perfect diabetes union. My own policy statement that outlines issues I stand for during this very important election cycle. Here are my thoughts:
 
 
– Any talk of a rework or repeal of the Patient Protection and Affordable Care Act must include a guarantee of coverage for every Amercian, regardless of what they’re living with today and in the future. And an undertaking like this must not take place until all sides can agree that this provision stays in place. If you don’t support that, I won’t even think about voting for you, and should you get elected, I might even go to Washington to protest your stance. Loudly.
Note: they don’t want to “repeal and replace”… they want to take away your right to coverage, and deny it forever. If you’re okay with that, and you’re okay with any coverage you might be lucky enough to get costing more anyway (because they never said it would ever cost less), then go ahead and vote for your candidate(s).

– The Competitive Bidding program set up by the Center for Medicare and Medicaid Services (CMS) must end. As soon as possible. I have friends being harmed by this program today, I will have friends being harmed by this program in the near future, and if it continues, I’m a little over ten years from being harmed by this program myself. People who really know, know this program is wasteful. Make them stop it. Now.

– The cost of drugs and devices necessary to keep us alive is too much. Consider the fact that having to pay extra just for the right to stay alive is asking far too much. Having what is considered to be good coverage that costs me thousands of dollars out of pocket every year is a ridiculous way to say “good coverage”. The cost of staying alive should be significantly reduced. Make it happen. My friends and I will help show you how.

– Patients require a seat at the table. Notice I didn’t say “want”… I said require a seat at the table. When our well-being and overall health are being discussed by Congress, by policy makers, by local and state legislatures, it is unthinkable to exclude patients from weighing in on the very issues that affect us. Trust me: you’re going to hear from us anyway. Don’t let it be while you’re backtracking from an ill-informed decision. Let it be when you’re discussing the very thing that we’re experts at living with. There’s a reason we’re experts at diabetes. We live with it every single day. Help us help you.

– In all you do, remember: People With Diabetes are worthy of your respect, consideration, and empathy. If you don’t yet possess empathy, it’s not too late to get some. Trust me, it will come in handy. All great leaders throughout our history have not only possessed empathy, they have displayed it often in executing the duties of office. All poor leaders in our nation’s history have lacked empathy. It is a necessary component of accepting the responsibility of any public office.

– Finally: if it’s not too much trouble, I’d like a slice of pie on my Diaversary this year. Anything that doesn’t contain marshmallow, meringue, or pudding.
 
 
I’m Stephen Shaul, and I approve this message.

Vote for Diabetes this November. To make your voice heard, PLEASE VOTE. Diabetes Patient Advocacy Coalition makes it easy to share your concerns to all the candidates right now: CLICK HERE.

Throwback Saturday? Happy Halloween, and my chili recipe.

Okay, it’s not Thursday… I don’t do many throwback-type posts here, but since I do this recipe every year at Halloween, and since the weather has turned a bit colder here in the Northern Hemisphere, I thought I would pass along my Cincinnati Chili recipe once again. Even without a kitchen this year (renovation in progress), I will find a way to make this recipe. It’s Halloween tradition now. You might want to try it too. Hope this warms your soul and makes you smile this weekend. Enjoy!
 
 
When you grow up in Cincinnati, you learn two things. One is how to spell Cincinnati, and the other is how to make chili. This chili is more mild than what you might find in Texas. But very flavorful and warming on a cold night.
Also unique is how it’s served. Either on a coney… mustard, hot dog, chili, shredded cheddar, and onions if you like. Or with pasta, as part of a three, four, or five way. That is:

– Three Way: spaghetti, chili, cheese
– Four Way: spaghetti, chili, cheese, and either beans or onions
– Five Way: all of the above

I generally start with ground turkey, but you can use beef, pork, lamb, whatever you want. I also make a great vegetarian version with something called Boca veggie crumbles. I was told by a dietician once that if you rinse the turkey with hot water after cooking, you can wash off about 90 percent of the fat. This makes a lot, so be ready to freeze some for another day. Here’s the recipe:

2 pounds of ground turkey, beef, pork, lamb, or vegetarian substitue
1 large onion, chopped
8-10 ounces of low sodium chicken broth or vegetable broth
1 teaspoon minced garlic
40 ounces of crushed tomato
1 1/2 teaspoons vinegar
2 teaspoons Worcestershire
1 tablespoon salt
2 tablespoons chili powder
2 1/2 teaspoons ground cinnamon
1 tablespoon ground black pepper
5 tablespoons ground cumin (a lot of people think it’s the cinnamon that defines Cincinnati chili. Actually, it’s the cumin)
2 dried red peppers

Finally, take some cheesecloth and make a little sack to include 5 bay leaves and 35 whole allspice
Saute your ground meat and onions in a pan. Then put everything else in a crock pot and give it a good stir. Set the crock pot to high for about half an hour to get everything heated up, then turn it down to low for at least a couple of hours. You will love how the house smells after a while.

– Total estimated carb count in each coney: 26 grams
– Total estimated carb count in each 3-way, 4-way, or 5-way: 45 grams

Carb counts are estimates only. Check with a registered dietician to find out what a healthy carb count is for you.

A cheese Coney

A cheese Coney

The classic Cincinnati chili 3-way

The classic Cincinnati chili 3-way

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