Monthly Archives: October 2013

The people we look up to.

It was three weeks ago that Tom Hanks revealed he’s living with Type 2 diabetes.

Tom Hanks is maybe my favorite living actor. Everything I’ve ever seen him in… He plays all of his roles so well that I have no trouble believing him as the character he portrays on stage and screen. I’ve got to think that’s exactly what an actor is going for when they play a part. If there was a movie star I’d really like to meet (other than maybe Sandra Bullock– for obvious reasons), it would probably be Tom Hanks. So the news of his diagnosis really hit me. And since then, I’ve been trying to find something profound to say about it.

Then, last Monday, Karmel Allison, who writes over at asweetlife.org, has lived with Type 1 diabetes since age 9, and is now 21 weeks pregnant, nearly passed out while standing behind the President of the United States. She was there because she wrote a fantastic post about how she views the Patient Protection and Affordable Care Act (AKA Obamacare) as a Person With Diabetes. The President’s speech was about his signature piece of legislation. I haven’t seen anything from her that specifically says it was hypoglycemia, but in the video it sure looks like hypoglycemia to me. Anyway, that part really doesn’t matter… does it?

At any rate, I was on the road from Charlottesville to Baltimore when all this happened, so I didn’t even find out about it until the next day. And yes, I read the comments after many of the stories about the event posted on the web.

I was shocked. I was horrified at the mean, awful, hateful things written. Democrat or Republican, Liberal or Conservative, you have to admit that the vitriol spewed in her direction was ridiculously mean. Other than what I saw posted from the Diabetes Online Community, I did not see one positive, one semi-empathetic comment. Not one.

Meanwhile, Karmel has kept from writing awful, vindictive things in response to these hate filled attacks on her and our President. Her Twitter account has been almost silent since the event. Even though she has a right to be angry and lash out at people who hate her only because of her proximity to the leader of the free world during a speech in the rose garden, she appears to have taken the high road.

What does this have to do with Tom Hanks’ diagnosis from two weeks earlier? And what do these two events tell me? Just this:

Our heroes can and do develop diabetes.

Our heroes can be and are affected by diabetes.

Our heroes remain strong and retain our respect despite diabetes.

These words apply to everyone out there telling their story through laughter, advocacy, sadness, athleticism, schools, careers, successes, and failures too. Tell your story honestly, with empathy for all and resilience against all odds, and I will always look up to you.

And no amount of hate can take that away.
 
 
 

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Like these links – Event Edition.

It’s late October, and with the chill in the air there’s an increased focus on current and upcoming events in the diabetes community. Take a look:
 
 
Thanks to the non-profit Diabetes Hands Foundation, The Big Blue Test is back! You know that November is Diabetes Awareness Month, right? November 14 is World Diabetes Day. Now until WDD, you (yes, YOU) can take part (and help people in need) by doing four simple things:

1. Test your glucose. Unless you don’t have diabetes, in which case you can skip Step #1.

2. Get Active. Exercise for 14 to 20 minutes. The form of exercise is up to you. Swim, play badminton, break dance, run naked through the streets… but don’t get caught.

3. Test your glucose again. On average, Big Blue Testers see a 20 percent drop in BGs after just this much exercise.

4. Share your results. Where? Here: http://bigbluetest.org
Also on Twitter (#bigbluetest), Instagram, Facebook, etc.
There’s even an app for that.

The really great part, besides the fact that you’ll feel better after, is that every time you log your goings-on between now and November 14, a donation will be made to non-profit organizations that are helping to save the lives of People With Diabetes by providing supplies, education, and services at the grass roots level. Get active and be an activist at the same time… I love it!
 
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Diabetes takes center stage in this post from Instructions Not Included. Becky in the UK has written her story and plans to perform it during Diabetes Awareness Month. How cool is that? Seriously, I think that’s very brave and inspiring. She has a request for the rest of us too: She wants us to take a picture of ourselves holding a sign with our name on it, and the words ‘I live in hope’. She hopes to use the photos in her show. Can you do that? Good. E-mail the photo to Becky at instructionsni@gmail.com.
 
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In December, Children With Diabetes (the people who put the Friends for Life conference together) is doing another Focus On Technology conference. I mention it here because there are so many events that happen in cities on the two coasts, and this one is in Cincinnati, Ohio December 7 and 8. Actually, it’s in West Chester, which is north of the city, which should make it pretty accessible to people from Dayton or even Indiana or Kentucky. The program includes a closing keynote address by Dr. Ed Damiano, discussing the bionic pancreas research they’re working on in Boston. When I saw him speak in February, he brought along the device they’re working with so we could all get a look. Just hearing his talk is worth the price of admission, and there should be much more. If you’re in the area, don’t miss it.

Go to http://www.childrenwithdiabetes.com/activities/Cincinnati2013/ to find out more. Click on the Program link at the bottom of the page to see what will be presented, and click on Registration at the bottom of the page to register.
 
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Finally, looking ahead, the date has been announced for the next JDRF Research Summit in Bethesda, Maryland (outside of Washington, D.C.). It will be on Saturday, March 1, 2014. The conference should be accessible by car or the Washington-area Metro, which connects to Amtrak, etc. No word yet on the presentations and personalities who will be there. But last year’s event was great, and very well attended. So put it on your calendar now. Registration opens on January 9. To find out more, go to http://jdrfsummit.org.
 
 
That’s it for now… have a spooky-great weekend!
 
 
 

Testing continues. And this time I mean it.

I promised more about this when/if it actually happened, so here it is: I began my participation in a new clinical trial on Monday.

I’m not permitted to say much about it right now. It’s a 32 day clinical trial testing a new continuous glucose monitor (CGM). I’m basically wearing the current version of the CGM that’s available to consumers today for the length of the trial. For about a week during this process, I’ll be wearing the new, investigative, not-yet-available-to-the-public version. There’s also an outpatient visit with the research team that will involve, among other things, intentionally inducing both hyperglycemia and hypoglycemia. Under professional medical supervision, of course. This ain’t Flatliners, man. That will happen in about two weeks.

The interesting thing about this CGM trial is that it could definitely have implications for artificial pancreas testing. More to be revealed on that as soon as I can reveal it.

Even though I was bummed about testing out of an artificial pancreas trial, and this opportunity sort of feels like a “lovely parting gift, thank you for playing”, it’s still great that I can participate in this kind of research. Testing the latest CGM technology? Check. Helping AP testing move forward (I hope)? Check. Helping to make things better for People With Diabetes? Check. What more could I ask for?

Whether I play a large or small role in research, what’s important to me is that I help move the needle each time I participate, even if that’s just a little bit each time. When I have more to tell, and I’m allowed to tell it, I’ll let you know.
 
 
 

It happens to all of us.

If you’re a pumper, chances are you’ve seen something like this before:

DSC01146

The story: I changed my set on Friday night, about 2 hours before bed. When I woke up in the morning, my #BGNow was 174 mg/dL. Higher than I would like, but I can deal with 174. I had a smaller-than-normal breakfast, and a fair amount of both coffee and water throughout the morning.

When I checked just before lunch, I was at 286 mg/dL. I was meeting a friend for lunch, and I just dealt with it… sometimes, new infusion sets just don’t seem to take right away. I had a very small lunch, enjoyed my time with my friend, and headed home.

Just before dinner, my BG test resulted in a 266 mg/dL. Okay, I’m getting some insulin, but something is clearly wrong at this point. What to do? Do an injection and wait it out some more? Or make the decision to change my set and start over?

I opted for changing my set, but not changing my tubing. If it was a bad cannula (pictured here) or a bad site, the tubing wouldn’t matter. If it was bad tubing, then a site change wouldn’t change anything, if you know what I mean. I’m the kind of guy who likes to know the cause of something, so I didn’t change the tubing, knowing I could do it later if I had to. As you can see in the photo, there was no need to because somehow the cannula got kinked. Which almost never happens to me, which is probably why I waited almost a day to change out the set.

After making the change, I did a correction bolus and ate a nearly carb-less meal. When I checked almost three hours later, I was at 84 mg/dL. Problem solved.

Just another annoying, stupid thing. Freakin’ diabetes.
 
 
 

One thing at a time.

Great #DSMA Twitter Chat this past Wednesday night. There was lots of discussion about things we can, or should, do offline in addition to our online activities. Well, what can we do?

What can we do to help others living with and affected by diabetes? The Diabetes Online Community is great, but not everyone knows about our wonderful little fast lane on the information superhighway. How do they find out? And how do we make a difference for others outside of our online cocoon? Oddly, it’s often offline that people learn about online information, support, and understanding. And it’s certainly where many grass roots efforts make real differences for those in need. For me, that’s where connecting with people has made a huge difference. But in the abstract, it can seem overwhelming. When you break it down into little bites (or bytes), however, it’s not so big at all. Let me explain:

You see, when I think about it in general terms, I have trouble believing that I’ve made any impact at all offline. Yet, when I consider single, one-at-a-time events in my life recently…

– At a JDRF meeting nearly a year and a half ago, I saw a presentation that led me to connect with others, that has led to participation in one clinical trial, and hopefully another before the end of the year, that have the potential to help others living with diabetes.

A blog post after superstorm Sandy compelled me to send extra durable medical supplies to people in need in New York.

– Thinking about my 15th anniversary at work this year inspired me to do some fundraising and #bluefridays support.

– Talking to my endocrinologist about my writing here has led her to give information about my blog to a few patients who, I hope, have connected beyond this page to a larger world of support and enlightenment.

– Going to in-person support group meetings, though rare, has allowed me to share what I’ve learned and discovered, online and offline, with people who have suffered burnout, stress, problems with insurance, and issues with understanding medical technology.

– And offline meetings like this one and this one and this one have helped me recharge my D-batteries, learn things I didn’t know before, and thaw my feelings toward my fellow man and woman in ways that I didn’t think was still possible.

Listen… I’ve only been at this blogging thing for a year and a half. I only discovered the DOC two years ago myself. I’m still a relative newbie at this thing. All of the things you see above are little things, small increments of change in my life that did not happen all at once. They happened because I thought, “Hey, why not? I can’t do everything, but I can do this one thing.”

My message here is: One thing at a time. Then one thing more. Then one thing more. You don’t have to invent something all on your own. None of the things I mentioned above were original ideas. They were things I saw that others were doing, and I thought I could maybe do them too. Eventually it became a body of support and advocacy that looks like I did a lot all at once, when it was really just one small thing at a time.

That’s how movements happen. It’s how the stone gets moved. That’s how small things become big things, and how big things become a groundswell, a steamroller that makes our lives meaningful and overwhelms indifference and apathy.

”You must be the change you wish to see in the world”—Mahatma Ghandi

Who are you, and what is your one thing?
 
 
 

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