Monthly Archives: July 2013

A Rare Non-D Post… Tour of the Neighbors.

Hopefully, I haven’t violated some intellectual property rights in naming that title.

Back in June, my friend and neighbor Brian Reynolds asked me to be part of a short film for the Baltimore version of the 48 Hour Film Project. It was the kind of thing where you hated going through the process, but at the end, all you can remember are the good and fun things.

For the 48 Hour Film Project, film makers are given a few guidelines and required elements, and 48 hours to write, shoot, edit, and basically produce a film.

This year, the required elements for each film were:

Character: Abe or Abby Tuesday, Tour Guide

Prop: A Cupcake (hey– it’s D-related after all!)

Line: “I’d like to introduce you to a friend of mine.”

All of these things have to be in the film somewhere. In this film, it’s hard to miss them.

The film also features our home (which is not at 90 Honey Pot Circle… don’t look for it on Google Maps), and it features The Live-In Niece as newlywed and new homeowner Janet Fredericks. I’m Tourist #6 (“Is she pregnant or not?”, “Try Oysters” and “We’re not gonna eat here?”).

Once the films were complete, a screening was held at a local movie house downtown, where groups of the films were shown one after another. It was a hoot being in the room with such creative souls and listening to all of the fun stories about the different shoots. And the belly laughs of all of the participants when they saw the finished product of their hard work on the big screen. My reaction: Man, I look a lot like my father now.

Now that I’ve given nearly the whole thing away, here it is… Tour of the Neighbors, a film by Brian Reynolds. Enjoy!

 
 
Happy Friday!
 
 
 

More on #StripSafely.

StripSafely

No doubt you’ve already heard of the Strip Safely campaign. But maybe you’re still asking, “Stephen, what’s it all about? What can I do about it?”. Here’s the lowdown:

At a public meeting back in May, the U.S. Food and Drug Administration (the FDA) acknowledged that there are glucose meters and test strips out there that are no longer as accurate as they were when they were approved by the FDA in the first place. That’s a big deal, no?

What if I also told you that even though the FDA acknowledges this issue, they have no program to perform post-market testing or remove inaccurate test strips from the market? Bigger deal, yes?

Our very lives depend on the accuracy of the numbers that appear on our meter’s display. If we see too low a number… we dose too little insulin and wind up with high glucose, high A1c results, and higher risks for complications later. If we see too high a number… we could dose too much insulin and wind up with severe hypoglycemia, or even death. No pressure, FDA.

So Bennett Dunlap and a few others started the Strip Safely initiative, to shine a light on this issue and encourage everyone affected by it to agitate. Call or write your congressional representatives, senators, and even the FDA. Voice your concern. Help lead the charge for better outcomes through more accurate test strips.

Want to do your part? I thought you would. Visit the Strip Safely site at www.stripsafely.com. There you’ll find a number of great templates you can use to send your own letter or e-mail. There are also links to help you find your elected officials in Washington. You can stay up to date on this issue with the latest updates, and even take the Strip Safely quiz to test your knowledge of test strip accuracy. Or take the quiz and then read about what’s happening… your choice.

For the record, here is a sample of the letters I sent by e-mail to U.S. Representative Dutch Ruppersberger, and U.S. Senators Barbara Mikulski and Ben Cardin of Maryland:

Dear _______,

I’m a constituent who has been living with Type 1 Diabetes for the past 22 years. Because my pancreas doesn’t produce insulin on its own, I receive insulin through my insulin pump 24 hours per day.

How much insulin is administered is based on a number of factors. Most notably, my blood glucose. As you may know, people with diabetes check their glucose levels several times per day as a baseline for determining how much insulin to administer as a result of diet, exercise, stress, and a number of other factors.

I’ve recently learned that the Food and Drug Administration, at a public meeting, acknowledged that some glucose meters and test strips are not as accurate today as they were when they were approved for use in the first place. Furthermore, they have no method to deal with removal or review of potentially inaccurate products from the marketplace once they’re found to be inaccurate.

The issue is simple: If the readings on our meters are inaccurately low, we might wind up not taking enough insulin, which could result in dangerously high blood sugars. If our readings are inaccurately high, we might take too much insulin, which could result in hypoglycemia, insulin shock, and even death.

So we know that not all meters meet the +/- 20% standard set by the FDA in real world conditions. Some manufacturers are now delivering products into the market that put us at increased risk. The lack of an ongoing periodic post market audit of real world strip performance helps these manufacturers risk lives.

What I’m asking you and your fellow representatives/senators to do is to look into implementing a post market program of ongoing random sampling of glucose meters and test strips to insure that all brands consistently deliver the accuracy in the real world that they were approved to do.

Without question, meter and test strip accuracy means the world to myself and my loved ones. We want to know that the number on our glucose monitors is correct.
Because our lives depend on it. Won’t you help? Thanks so much for your consideration of this very important topic.

 
 
This is important. I’m going to say it again: Lives are at stake. I encourage you to get involved and help to save lives today.
 
 
 

Cross it off of the list – Pikesville 5K.

Sunday was something like the 8th or 9th year in a row that I’ve participated in our local neighborhood 5K run.

This year was different from all of the other years. Because this year, I got to run with family:

DSC00918

Rather than do this thing all by myself, The Live-In Niece ran the entire race with me. She was a division 1 soccer player in college, and that wasn’t too long ago, so she’s pretty fit. But she had never run in an event like this before.

So we stayed together, communicated when necessary, and covered the course in just under 31 minutes. Kinda slow by my standards. But it just felt so good running next to Rachel and feeling that bond as we covered the same ground, sharing the same experiences, crossing the finish line at the same time. Something about that makes the victories much more rewarding. Sound like any experiences you know of?

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The BGs behaved too… 186 mg/dL at the start (small breakfast but no bolus), and 123 mg/dL after.

In short: Best. Run. Ever.
 
 
 

Sailboats.

Sailboats
I was standing in a conference room at work the other day, waiting for a meeting to start. The room looks out over the Inner Harbor here, and off in the distance I could see a sailing class. Lots of little sailboats tacking back and forth, all with different brightly-colored sails being filled out by the harbor breeze.

Watching that scene made me think about this thing called diabetes. There are a lot of us out there faced with the daily, relentless onslaught of this chronic condition. Tens of millions of us just in the USA. According to the International Diabetes Foundation, there are over 300 million people affected by diabetes across the globe.

But we’re not all the same. Like the little boats in the harbor with green sails and blue sails and pink sails, there are people living with Type 1, Type 2, LADA (Latent Autoimmune Diabetes in Adults), and other forms of this disease. The therapies and drugs available to treat our conditions are even more different than the types themselves.

A Type 1 may be on MDI (multiple daily injections), or may be taking advantage of insulin pump therapy. A Type 2 may be taking a pill to help keep their glucose levels down, or they may ramp up their exercise regimen and change their diet significantly after diagnosis. A person with Type 1, 2, or LADA may consider making the decision to wear a continuous glucose monitor (CGM). Or not.

Some, unfortunately, do not have these decisions to make at all. For many in developing countries, a diabetes diagnosis is a death sentence, either due to lack of insulin, the ability to keep it cold or warm enough, or the lack of ability to pay for it at all, not to mention the absolute dearth of access to care and education. It hurts me to think of the fact that by pure luck, I wound up in a situation where I have access to care and drugs and technology that allow me to lead a good life, while others die for lack of basic necessities.

When it comes to research about diabetes and the search for a cure, there are many different courses charted too. Many doctors are furiously searching for the absolute source of the beginning of diabetes in a person’s beta cells, in the hope that they can stop whatever triggers the disease in the first place. Others are making progress in leaps and bounds by developing technology that, while not providing a cure, may change how we live with diabetes by helping us to stay safe and always keep our blood glucose in a stable range (I’m looking at you, Artificial Pancreas).

So just like those sailboats going east and going west, we’re all headed in different directions. We have our busy lives full of jobs and family and social media, etc. Some of us write about diabetes, some walk for a cure, some ride for a cure. Some have enough to do just fighting the demons within themselves… the ones that say “Give up” or “Why do you keep trying?”. The people who overcome that kind of challenge are champions just as much as those who make headlines and raise thousands and help others.

I’ve said it before: Diabetes comes in many flavors. No two of us are exactly alike. Except that we possess two very special qualities.

We are blessed with empathy. Living with D has made us acutely aware of what it’s like to deal with inexplicable highs and lows on a regular basis. What it’s like to deal with medical professionals who write off anything not great as entirely our fault. What it’s like to listen to people who spread misinformation, then think about it as an educational opportunity. I’m constantly amazed that I have not yet encountered anyone in the Diabetes community (online or not) who is mean or ego-driven. I think that comes from a place of empathy first. We know what it’s like… Your highs are our highs… Your lows are our lows… Your successes are our successes.

We’re also blessed with resilience. We all have the unique skill of being able to get up every day, tote our gear, and treat our condition. Every. Single. Day. How many of us think that before our diagnosis, we’d be able to keep this up for years? Diabetes teaches us resilience, and every day that we hang in there and do what we have to do is a victory.

The songwriter Jason Robert Brown wrote a lyric that goes “We have nothing much in common; but we are more or less the same”. In the song, he was talking about his brother. In my life, I’m talking about my brothers and sisters with Diabetes. We have many differences. But we are all the same.
 
 
 

Like These Links – Provide Support – Participate – Do Good.

You may have heard about all of these already. But just in case you haven’t, be sure to lend your support, learn, and participate in all of these initiatives:
 
 
Scott Johnson has made it to the semifinals(!) of the 2013 Insulindependence Athletic Achievement Awards contest. He needs your help to make it to the finals. Each unique view of the video below means another vote for Scott in his quest to win a $5,000 package of support for his future athletic endeavors. So view it on your desktop, your laptop, your iPad, your smart phone, and all of the PCs in the school library. And don’t forget to share this with your friends too. Scott’s an inspiration to everyone (myself most definitely included), so show your support by viewing today.


 
 
Now… A reminder to Strip Safely. Glucose meter and test strip accuracy is a big issue, and there’s a DOC initiative to do something about it. I invite you to go to www.stripsafely.com (or click on the image below) and take the quiz. Then do something about it, including writing your elected officials in Washington and telling everyone about it. Tell everyone about it. Because our lives depend on it. More to come on this issue, in this space soon.
StripSafely
 
 
Finally… If you live on the USA’s east coast, you’re invited to join the #DSMA party in Philadelphia on August 7th. That’s during the time that the AADE convention is taking place there. Cherise and Scott will be hosting DSMA Live, and since it’s a Wednesday, I suppose there will be some #DSMA Twitter Chat going on in person too (is that a thing?) Here’s the information:
DSMA
 
 
Get involved now… Happy Hump Day!
 
 
 

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