Monthly Archives: April 2015

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.
 
 
 

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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.
 
 
 

Still wondering.

So… I’m somewhere around three weeks until the next appointment with my endocrinologist.

My last several A1cs have been excellent for someone living with Type 1 Diabetes.

But how have I gotten there? I wonder.

Did I get there with perfect blood sugar numbers all the time?

Did I get there with lots of lows?

If I had a lot of lows, did I do more damage to my overall health than that A1c number is worth? For the record, my basal insulin delivered versus my bolus insulin delivered always turns out to be pretty much what they are supposed to be, I’m told.

But still… What if I’m using too much insulin to knock down potential highs, leaving me with extra insulin that’s just going to get stored around my midsection? Honestly, I’m really worried about that.

What if those lows are killing off brain cells, causing other issues that I haven’t imagined up until now?

What if my A1c looks good, but my highs and lows go up and down through the day like an EKG, instead of like a normal person’s pancreas works?

I mean, look… On paper, I’ve been the model student for some time.

I’m still wondering if the truth is something different altogether.
 
 
 

Please share your thoughts: #IWishPeopleKnewThatDiabetes

Denver teacher Kyle Schwartz started this wonderful #IWishMyTeacherKnew initiative, in which she asks her students to write down on a post-it note what it is that they wish their teacher knew. The story is inspirational and uplifting, and reading about it brings tears to your eyes sometimes, and it’s been all over the news lately. HERE is an example, courtesy of CNN.

Kelly Kunik and I both saw this story at around the same time, both of us had similar ideas, but she beat me to the punch in designating today as #IWishPeopleKnewThatDiabetes day. Because she’s just awesome that way.

Look for my takes on this below. Look for additional brain spewing and general thoughts on this meme throughout the day on all social media. And tonight’s DSMA chat is all about #IWishPeopleKnewThatDiabetes… the Good, the Bad, and the Ugly. Join us at 9:00 ET in the USA by following @DiabetesSocMed and the #DSMA and #IWishPeopleKnewThatDiabetes hashtags.

Here we go:

#IWishPeopleKnewThatDiabetes sometimes causes high BGs in the mornings that are a pain in the ass to deal with. But… #gameface

#IWishPeopleKnewThatDiabetes is not equatable or equitable to anything else. Even to yesterday. It’s day-to-day, monitor it all the time, never gonna get a vacation from it.

#IWishPeopleKnewThatDiabetes looks normal, and even manageable, from behind the face of this blog; but in reality, I deal with the same problems, the same headaches, the same highs and lows, that everyone else living with this disease deals with. You are not alone, dear reader.

#IWishPeopleKnewThatDiabetes makes me work harder than my co-workers will ever know.

#IWishPeopleKnewThatDiabetes has caused me to experience near-death hypoglycemic low blood sugar battles at work, at home, in the grocery store, during workouts at the gym, on vacation in multiple countries, and just about anywhere else in my 24 years with diabetes. It has sapped my energy and killed brain cells and while I try, I can’t be guaranteed to not experience another one today. Or tomorrow.

#IWishPeopleKnewThatDiabetes makes me want to simultaneously invest large (to me) sums of money in and kick the teeth out of insurance companies that make life and death decisions for me and my friends based on nothing other than “delivering increasing returns to shareholders this quarter”.

While we’re at it, #IWishPeopleKnewThatDiabetes is making people who already can buy or sell anything they ever wanted increasingly richer, while making other people increasingly have to choose between food for their families, keeping the lights on at home, and paying the mortgage; or buying the drugs and devices that will keep themselves or their loved ones alive on the other. On a monthly basis.

#IWishPeopleKnewThatDiabetes made me one of those people who once had to choose between food, keeping the lights on at home, and paying the rent; or buying drugs, DME, or going to the doctor when I needed it. On a weekly basis.

#IWishPeopleKnewThatDiabetes has blessed me with not only a faulty pancreas, but also the kind of daily resilience that some can only dream of. And empathy that, unfortunately, some others will never understand. That will not keep me from trying to help them understand and empathize with the daily resilience that me and all of my brothers and sisters with faulty pancreases possess.

and…

#IWishPeopleKnewThatDiabetes has connected me with so many people living with and affected by diabetes through daily interactions, Twitter exchanges, blogs, Facebook, healthcare professionals, the scientific community, and as yet unknown additional outlets that inspire, empower, and I know, will eventually overwhelm the bejesus out of this stupid, effing, disease.

If you’d like to add more, join us tonight… and by all means, leave a couple of things #IWishPeopleKnewThatDiabetes below.
 
 
 

#HealtheVoices15: We are not alone.

April 17 through April 19, I attended the HealtheVoices Conference in Jersey City, New Jersey. Janssen Pharmaceuticals paid for my train travel, hotel, and meals so I could take part in this gathering. In case you’re wondering, all opinions expressed here, or using the #HealtheVoices15 hashtag are entirely my own.
HealtheVoicesConference
I spent last weekend at something called the HealtheVoices conference in Jersey City. Unlike all of the diabetes conferences I’ve attended in the past three years, this conference brought in people living with a host of different chronic conditions.

And you know what? I discovered we are not alone.

Okay… sure… I knew that People With Diabetes are not the only ones living with a chronic condition. But when you get immersed in a cause, after a while, you tend to forget about the others who are out there working on different causes, lifting up others living with a different disease. One of the really cool things about this weekend was the opportunity to see and hear from people living with and advocating for those living with Chron’s disease, HIV, Rheumatoid Arthritis, Cardiovascular issues, Breast Cancer, Prostate Cancer, and so much more.

The presentations were well thought out and well presented. I liked learning how people are making a mark in their own patient communities. There were also presentations where we learned about the legal ins and outs of writing a blog, how to take an idea and get it funded, and the importance of telling our stories online and engaging with others to create a better community.

And just like the diabetes conferences, there was real value in the one-to-one, peer-to-peer conversations that happened over breakfast, lunch, dinner, and between sessions. Some of the best ideas I heard, and some of the most inspiring things I witnessed, came in those quiet moments where someone was able to share what they’ve experienced and what they’ve learned with a bigger audience. I got to watch groups from other conditions gather and share and laugh together, just like PWDs do. I found that the power of “me too” isn’t exclusive to diabetes.

So by now, you may be asking: What about the diabetes people in attendance? Well, let me tell you… the diabetes team absolutely rocked it this weekend.
BlueFridaysCheriseKarenKim
Cherise, Karen, Kim, and also Christel and Kerri (who also presented and was on the advisory panel for this conference) were sponges who spent equal time gathering information, listening to others, and sharing their stories and tips with others. They were tweeting like crazy and asking questions and engaging in conversation. One of the other things I learned about this weekend is that we’ve accomplished an awful lot all on our own.

I should also take a moment to thank the people at Janssen who gave up their weekend for this event. Thanks especially to Rachel Yurchak and Caroline Pavis, and to the people whose last names I don’t remember, like Stephanie and Beth. You made us all feel welcomed and important.

I’d like to think I’ve met a few people that I’m proud to say are friends now. I’d also like to think that I’ve found a few new things to aid me in my advocacy efforts.

Listen… My diabetes community bubble is good. It helps me when I’m down, it inspires me to perform advocacy, it has changed my life in a positive way forever. The great thing about the HealtheVoices Conference was that I could see, and learn from, additional communities that are doing the same thing, with people who are just as inspiring, and who encourage me to do better and be better. I will never forget their stories.
 
 
 

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