Like these links: Diabetes UnConference, Diabetes Blog Week, and DSMA!

I have a few important things to let you know about today… especially if you haven’t seen anything about them yet. If you have, think of this as a list of friendly reminders.
 
 
First… Early Bird registration is now open for the next Diabetes UnConference in Las Vegas, March 10-13, 2016. The Diabetes UnConference brings together adults living with diabetes, who discuss the various psychosocial issues that PWDs deal with on a regular basis. My experience at this year’s UnConference was, in a word, special. I’d love it if it could be the same for you.

Also, as I mentioned here earlier, next year’s UnConference schedule will include sessions for T3s… Type Awesomes… those who love and support us and deal with a lot of issues too. There will be opportunities for both People With Diabetes and People Without Diabetes to interact, but there will also be a separate space and special sessions so People Without Diabetes can experience the UnConference too, sharing among their tribe, peer-to-peer (still adults only).

And, in case you haven’t heard yet, there will be an East Coast version of the Diabetes UnConference next year too! It will happen sometime in the fall, but I’m not sure I can give you any specifics yet (mostly, because I don’t know them). But if Las Vegas isn’t your thing, or it’s just too expensive to get there, look out for news on this second Diabetes UnConference soon.

To register for Vegas, or to keep up on the latest on everything UnConference, CLICK HERE.
 
 
Second… We are on the cusp of another exciting Diabetes Blog Week! #DBlogWeek is teed up and ready to go, beginning next Monday, May 11 and continuing through Sunday, May 17.

Karen Graffeo of Bittersweet Diabetes fame started Diabetes Blog Week five years ago (five!) as a way to get diabetes bloggers to participate in something that would bring them together, by sharing blog posts on a different subject for seven straight days. It’s a great way to find new blogs, and if you’re thinking of starting one yourself, it’s an awesome way to start. The more the merrier.

Seven days, seven posts (don’t worry—no one is going to hunt you down if you miss one). To get all of the information on Diabetes Blog Week, CLICK HERE.

Karen… why does this week always come up just when I’m experiencing a bit of writer’s block? Coincidence? Hmmm……
 
 
Third: I will be moderating the often imitated, never duplicated DSMA Twitter Chat beginning tonight at 9:00 EDT(US). You are welcome to join the talk, encouragement, support, and laughter that the fastest hour of the week is known for. Our topic this week:

Diabetes is NOT for the weak.

To join the conversation (or just lurk), follow the @DiabetesSocMed Twitter handle or the #DSMA hashtag. Join us!
 
 
Finally… I saw this on the train on my way into work this morning:
PowerToPreventDiabetes
Maryland’s Department of Health and Mental Hygiene has done an awful lot in my state to bring diabetes (and pre-diabetes) awareness to the masses. They have a pretty extensive website that has a “Take the Quiz” feature, and helps residents find resources to help them if they need it.
 
 
There you have it. Some important, engaging, and fun happenings in the diabetes world. Enjoy your Wednesday!
 
 
 

Choose something new? Or go with the existing standard?

I’m thinking it might be time… time to find a new piece of alert jewelry.

The only medical alert jewelry I've ever owned.

The only medical alert jewelry I’ve ever owned.

I am incredibly awed and fascinated by people who have diabetes ink on their bodies. Those people don’t have to worry about wearing a bracelet or a necklace that details the fact that they have diabetes. It’s right there on their arms (it’s on everybody’s arms, right?) for everyone to see. But… while I may admire someone else’s tatoo, the thought of getting one of my own just doesn’t appeal to me.

I’ve had the same Medic Alert necklace for all of the 24 years I’ve been living with diabetes. I updated it after I was diagnosed with high blood pressure, but it’s been the same model all this time. I got it originally because 1) I was told I must get a medical alert something because I had diabeeeteees; and 2) Because I didn’t want to be too flashy about advertising my diabetes to the world. Geez, and now I write a blog and engage in advocacy. How the world changes.

The thing is, I actually like my necklace. It has the basic information. It allows someone who finds me to make a collect call (why they don’t have an 800 number after all these years is beyond me) if they want to find out my endocrinologist’s name, etc. It has all of the most important medical information on it:

DIABETES
INSULIN DEPENDENT.
HYPERTENSION
ALLERGIC TO SULFA.

After wearing it 24/7/365 for so long (except while swimming and… sex), it really feels like another part of my body. It feels weird when I’m not wearing it. And I know of at least one instance when emergency medical technicians looked at it and made the call, getting valuable information that helped me.

But… I don’t like to stick with the same thing all the time. I’m thinking it might be nice to have something else I could wear now and then. But what? I’ve seen a lot of ads for different medical alert bracelets and such. Should I get something new? Even if it’s just so I could have an alternative? First world problems, yes?

I don’t know the answers to those questions yet. But I’m going to do a little research. I’m going to look into what’s available on the market, and decide if something new might be good for me.

I’m thinking it might do you some good to look into alternatives too. Unless you’re wearing something you really like already. If you are, please leave me a comment to let me know what it is so I can check it out. If you’re living with diabetes… and you don’t have something like this that you’re wearing already… even though it might seem strange and uncomfortable at first (because it was for me too)… get one now.

As strange as it may seem to be wearing an advertisement for your own diabetes, that advertisement may prove amazingly invaluable to you today, or tomorrow, or fifteen years down the road. If you want people to take your diabetes seriously, take it seriously yourself and get your own alert bling. Then leave me a comment below.
 
 
 

Diabetes ain’t no sissy game.

We’ve talked about this before…

Why is it that we are all so good at making life with diabetes look normal?

The reality is that life with diabetes is anything but. Diabetes is not for sissies.

– How many times have we worked hard, over a period of years, just to get our A1c down to a range that we and our endocrinologists can be happy with? How many times have we worked hard, over a period of years, to keep our A1c from growing higher?

– How many times have we voluntarily engaged in the tradeoff that includes using a sharp tool that causes us to bleed, just so we can help maintain our diabetes management?

– Pump users: How many infusion set changes have you completed over the course of living and pumping with diabetes?

– MDI users: How many injections have you had to endure over the course of living with diabetes?

– How many hypoglycemic moments has your diabetes included? Lows that knock us down… but often we get up and go on with our lives like nothing ever happened. And the people who we would most like to know, don’t have any idea at all what it’s like. Side note: I tell those people that I went through a near-death experience. Because I did. I want them to know how precarious the balance between high and low BGs really is.

– Show of hands: How many of us have had workouts that were cut short due to the fact that our bodies use insulin way better when exercising, and getting the basal/carb/exercise mix is difficult and ever-changing?

– Have you had an endocrinologist tell you that your A1c was high, and you’ve been trying so hard, and you just wonder if you should keep trying anymore? But you do, because, what’s the alternative?

– Did you get one of those unhappy A1c reports, or a high or low number on your meter, or a pump occlusion that causes you to do more than one set change in a day, or a low or high that just doesn’t seem to quit, but…

We forgive ourselves? That, my friends, is real bravery.

I haven’t even started on all the things that parents of kids with diabetes have to go through, much of which is even more out of control than what I go through.

There are many things that diabetes puts us through, on a daily, weekly, monthly, quarterly, year-by-year basis. Sometimes we can feel like a failure. Like we’re weak. Like we’re not as good as someone else. But nothing could be farther from the truth.

It’s easy to forget the fact that we’ve endured a lot, and come through it despite the tough moments (or weeks, or years) that come with living with a disease that is with us all the time, and is so volatile.

Fact: Diabetes ain’t no sissy game. If you’re living with diabetes, and you’re alive, you are a champion.

Have anything else you’d like to add? Feel free to tell me how you’ve endured through the months or years by leaving a comment below.
 
 
 

This week in Baltimore.

I don’t generally go off topic and talk about a non-diabetes issue here. But I don’t have anything else pressing at the moment, and this is all happening in my city, so why not? And if you happen to draw diabetes parallels to my thoughts, so be it.

I live in Baltimore, a city of around 650,000 people, with another million or so living in the surrounding counties. Give or take a mil, as Lauren Bacall said in How to Marry a Millionaire. As just about everyone in the developing world knows now, there was some serious destruction of property and also some looting in the city on Monday afternoon, leading into Monday night.

Quick note: I actually live a little over a mile outside of the city line. I work in the city (downtown) on my regular job throughout the week. If you’re wondering, me and my family are safe, and other than leaving work early Monday, and working from home Tuesday, we are unaffected by this event.

Like everyone else watching this unfold in front of their television, I was shocked and dismayed by what I saw Monday. I’m not going to try to break down what happened and why, but I will share a few thoughts here today. A lot of this comes from my own personal experiences after living here for over 20 years.

First of all: Baltimore is a rich, culturally diverse city that is, by and large, very friendly. I felt welcomed here from the very first day I arrived, and it’s probably one of the biggest reasons we’ve stayed here as long as we have. And I practice what I preach… I am happy to say that I actually do have friends of every race, color, religion, gender, national origin, age, disability, sexual orientation, and gender identity in my life here (Sorry if that sounds a little wordy– I had to go through those one at a time to double-check whether what I was saying was true).

This includes those living in the Mondawmin and Penn-North areas where most of the rock-throwing and looting occurred Monday. It’s not like I drive through those areas every day; I don’t. But I have, more than once. And the train I take to work goes right through the middle of those areas, and the people boarding the train at Mondawmin or Penn-North aren’t fundamentally different from anyone else.

But… and it’s a big but… There is truth in the notion that there are two Baltimores. The wealthy, elite, almost entirely white, privileged Baltimore that never even speaks to someone from those areas, let alone visits those areas to see how they can help. And the impoverished, struggling to pay the bills, kids pressured to join gangs or face beatings (or worse), living in a food desert families in East and West Baltimore.

That second group is the one that has seen a huge rise in their numbers jailed in the last ten years, beaten by police, killed by one another in the struggle to survive or get ahead. Ninety percent of elementary school children in this area receive federal assistance for school breakfasts and lunches. Because Baltimore is a city of neighborhoods, and people often tend to stay in their neighborhood, many of these people live their entire lives without even seeing the beautiful inner harbor area downtown that tourists frequent so much. As a result, they form ideas and opinions based solely on what they see every day, in their own neighborhoods. Yet, when you speak to them, their hopes and dreams are the same: A roof over their heads, food on the table, a few dollars in the bank, enough safety to enjoy them all.

Baltimore isn’t as segregated as some other cities I’ve seen. But as you drive around, and you encounter different people on a daily basis, the class distinctions between neighborhoods (and people’s perceptions about those neighborhoods) are very clearly defined.

So when you’re a kid who grows up in one of those, let’s say it, underprivileged neighborhoods all your life, you rarely see a glimmer of hope, you constantly encounter judgement from others based on nothing more than where you live (like you had anything to do with it)… you see people you know, or who look like you, being treated unfairly at best, and injured or killed at worst, in your own neighborhood and throughout the country… once your despair reaches a certain point, you figure you’ve got nothing to lose anyway, and you’re going to give in to the mob mentality and act out.

I am not surprised in the least that this sort of incident occurred. I am saddened by the fact that it happened in the city I call home.

So what’s next?

The biggest thing in the immediate future is the police report due on Friday. This will (hopefully) detail exactly what happened to Freddie Gray after he was arrested, including what happened in that police van that made four additional stops before he made it to the hospital. This much is clear: the report must be transparent, and hold accountable anyone who may have been negligent or complicit in his death while in custody. If that report exonerates all involved, don’t be surprised if there is a repeat of Monday’s lawlessness.

Going forward, it’s important that Baltimore’s civic leaders restore accountability at all levels within the city’s police force. If citizens don’t trust the people hired to protect them, they won’t have a problem acting in an untrustworthy manner themselves.

And the idea that there are two Baltimores? This really needs to be addressed. I don’t have any great ideas. I just know that when there is one group of people who has it better than another, and the group that doesn’t have it better is aware of the divide that exists, frustration and resentment will build until it can’t be contained anymore. That’s a completely avoidable outcome, without making anyone really suffer. In fact, giving people the help they need and the voice they deserve, while providing equal justice under the law, makes us all stronger.

It’s an idea that’s so simple, so American, that it hardly needs to be said. Fairness and friendliness builds trust. This week’s events prove that we are, indeed, only as strong as our weakest link. I will take a renewed sensitivity with me wherever I go in the city from this point forward. If you encounter me somewhere, remember:

I support you… no conditions.

UPDATE: Despite the fact that I have not found their reporting to be entirely accurate this week, CNN did a nice breakdown of the “Two Baltimores” in this online piece.
 
 
 

Medtronic Acquires Diabeter: Hopefully, the beginning of something great.

A couple of weeks ago, Medtronic, the maker of the insulin pump I’m wearing, made a few waves with its acquisition of the Diabeter clinic in the Netherlands. Diatribe has some of the details, and they were able to speak with Medtronic Diabetes President Hooman Hakami. To read the full story, CLICK HERE.

Diabeter has clinics in four different locations in the Netherlands, specifically designed to help children manage their diabetes. They do a lot to work on a continual basis with patients, employing technology where possible to help patients make updates and manage their care in between visits to the clinic. And they’re pretty successful too: Eighty-five percent of their Type 1 patients who wear insulin pumps carry an A1c under 7.5, and half of their patients on MDI (multiple daily injections) do the same. Notable is how involved they are in their patient’s care. In short, they and their patients are sharing data, and making updates to therapy where necessary, a lot more often than the every 90 days model that most of us here in the States work with.

What does this deal do for Medtronic? I think it probably means a lot of things, not all of them bad.

First, they’ll be able to get real up-to-date information on patients, allowing them to see where they, as a company, might be able to step in and make a positive impact. If one particular product or plan works better than another for a patient, they’ll be able to see that and then bring their vast resources to bear on helping bring that to a wider group of patients. Likewise, Diabeter should be able to continue helping patients without worrying about who is going to pay the rent every month.

Let’s make no mistake though. Medtronic would not have made this investment without wanting to profit from it. Initially, we know they would like to expand the Diabeter model to others in the Netherlands and throughout Europe. What would that look like? Do patients get charged every time data is shared back and forth with a healthcare professional? If patients are considering an insulin pump or CGM for the first time, will they be able to choose between a Medtronic pump/CGM and other offerings on the market in Europe? We don’t know how it’s going to work… it’s still too early. But I don’t think it would thrill Med-T if most of the patients at Diabeter clinics were wearing an Animas Vibe system.

And finally… since it’s so successful, could the Diabeter model work here in the USA? I certainly think it could. But I don’t think it would have a chance here. That’s because of restrictions that insurance companies would make on constant feedback to and input from your doctor. There’s a reason why we go to the endocrinologist only every 90 days, and it’s not just about A1c. I also think it would tax endos and CDEs, especially, to be that involved in a patient’s care. There aren’t enough of them to go around as it is.

I don’t know. Maybe I’m too pessimistic about all of that. I know this sort of system would work for People With Diabetes here. The real issues around making it happen would be resources and payment.

I must admit that I find this acquisition by Metronic interesting. I’m going to want to see how this works for everyone involved: Medtronic, Diabeter, healthcare professionals, and most of all, patients. Over the next few years, I’m hoping we see the expansion of proven techniques that help PWDs be as successful managing their diabetes as possible, with the least amount of work involved to get there. And I don’t care where the great ideas come from, as long as they keep coming.
 
 
 

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