Author Archives: StephenS

Hello… I’m Stephen. I live in Baltimore, Maryland, USA with The Great Spousal Unit, Maureen. I’ve been living with Type 1 Diabetes since January 1991. I’ve been a pump user since April 2010, and I’m currently wearing the Animas Vibe pump. Also wearing the Dexcom G5 continuous glucose monitor.

I found the Diabetes Online Community in the summer/fall of 2011, and that discovery has changed my life. I started this blog in April 2012, and since then, my diabetes advocacy has continued to grow. Among other achievements, I’ve attended and spoken up at FDA workshops and participated in clinical trials.

I’ve been thrilled to serve as a facilitator for the Diabetes UnConference. And I’ve been honored to volunteer for Diabetes Patient Advocacy Coalition. You should Google both of those.

I’m currently serving as a member of the State of Maryland’s Advisory Council on Health and Wellness, where I am co-chair of the Diabetes committee. In addition, I’m part of the 2018 Reader Panel at Diabetes Forecast magazine.

I’m always searching for the perfect balance between the highs and lows of my blood glucose level and my life… always searching for the Happy Medium.

Anything you’d like to share? Please let me know… I’d love to hear from you.

Medical IDs– Update your info.

November 6, 2013 – 8:54 am

I’ve seen a few #dblog posts recently (like this one) from writers talking (and asking) about medical ID gear. So I thought I would weigh in on the subject too.

Officially, I’m still wearing my Medic Alert necklace that I purchased about 15 years ago (click here to see– no, I don’t have the beaded chain). The reasons are simple: I’m okay with how it looks, it’s durable, and it’s always around my neck. I really only take it off to swim.

But it’s not that simple. Medic Alert keeps a profile on you containing lots of information like your emergency contacts, your medical team, and more. The idea is that responders can call the number on the back of my ID, give the serial number on the back, and get all of this info in a flash. While I’ve had my necklace for a long time, I recognize that some of the important information is out of date.

How out of date? Really, really out of date.

I logged onto the Medic Alert site. Well, no, that’s not exactly what I did. I went to the site and had to create a user ID and password. It’s been so long since I updated my information that Medic Alert has gotten into the 21st Century and actually created an online way for you to update your information. For all I know, this could have occurred back in 1999, because it’s been that long since I last updated my info.

Since then, I’ve changed doctors (3 times), I’ve changed insulins (twice), I’ve added an insulin pump, and I actually got a mobile phone!

Moral of the story: It’s great to have something that alerts responders of your condition, and who to contact when you can’t do it yourself. Extra points if it looks good too. But something new and bright and shiny doesn’t help if the information associated with it is stale.
 
 
 

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Clinical trial, week two.

November 4, 2013 – 8:48 am

So here’s a quick update on my latest clinical trial. Okay, maybe not so quick, but I’ll try to make it as succinct as possible.

Officially, I’ll be testing the new Dexcom CGM, the G5. Not sure at this point when I’ll be hooked up to the G5. It’s a 32 day trial. For now, I’m wearing the G4 version, which I will continue to wear for the length of the study. This week, I’m traveling back to Charlottesville to go through a series of tests. On the day of testing, I’ll have an IV in my arm. I’m not sure what all of the tests will be, but I understand part of it will entail getting my glucose up over 200 mg/dL quickly, then dosing me with insulin to bring me back down quickly. I don’t know more about it than that, but I should have a couple of stories to tell later.

The team will measure the results, taking blood samples throughout the day. That’s probably the reason for the IV.

In addition to all of that, four days of the trial will be “insulin sensitivity days”, which involve eating exactly the same meals and snacks, at exactly the same time, throughout each of the four days. So if I’m eating instant grits and turkey sausage for breakfast at 6:00 in the morning (true), then a ham sandwich for lunch at 12:15, and a granola bar as a snack at 3:00, I have to eat exactly that, at exactly the same time, on the other three days too. The hard part for me is the Stouffer dinner I picked out. Easy to do the carb count, but I’m spoiled… I am not a fan of boxed dinners.

What’s the upshot of all this testing? Let me answer a question with a question: Did I mention this version of the G5 is specifically designed to speak to UVA’s artificial pancreas technology? I know I’m connecting dots that are not even on the chart yet, but in short, if these tests are successful, it should help clear the way for at-home artificial pancreas testing. That’s where patients would get hooked up to the AP, then go home for anywhere from a few days to a couple of weeks. That’s a huge leap forward in the development of this important technology, which is why I say I’m connecting dots that aren’t on the chart yet. But I can see the natural progression of the testing, and I can understand that a day like that is coming, and not too far off into the future. Okay, now I am really speculating, so I’ll stop now.

I hope to have another update next week… Thanks for supporting me through this important testing!
 
 
 

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Athlete with diabetes? You deserve an award.

November 1, 2013 – 9:22 am

Welcome to November 1st, the first day of Diabetes Awareness Month, 2013. World Diabetes Day is once again scheduled for November 14th, which is a Thursday. There will be many happenings this month, which I will do my best to keep track of over the next few weeks.

You know, every year around this time, I see blog posts and Twitter conversations filled with “What are you going to do this year for Diabetes Awareness Month or World Diabetes Day?”. And to me, that question is always kind of intimidating. I mean yeah, it’s helpful to remember that one thing at a time is important, and small changes can have a big impact. But when I hear that question this time of year, I don’t hear “What are you doing?” as much as I’m hearing “What big, gargantuan thing are you doing that will wow the masses?”.

Well, I don’t know if this will wow the masses. But it’s an idea that came to me a few weeks ago, and I’m going to try it and see if it gets any traction. If it does, great. If not, no big deal.

What am I talking about? I’m glad you asked!

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I am constantly in awe of athletes with diabetes. Not just the ones that climb Everest or run the Sahara desert. I’m also in awe of those people who get up and make a commitment to exercise, and keep going, despite how our bodies initially respond to said exercise, and in some cases, what years of insulin, and diabetes in general, does to our bodies (raising my hand here). Seriously, as an athlete prior to and after my diagnosis, I can tell you that it is waaaay more difficult to start and maintain exercise as a Person With Diabetes. It can be both scary and exhilarating all at the same time.

Yet, competing in events and going to the gym generally means you’re competing for the fun of it. No prize money, no podiums, you get the idea. Very few events give out awards or medals to anything lower than the top three finishers, if they give out anything at all. But the efforts of all of us are worthy of recognition and support. If you finish your first 5K run, if you ride your bike 50 miles, if you get up and hit the trails for a week when you haven’t gone for years, you’re a champion in my book. And I want to give you a medal.

Your effort as an Athlete With Diabetes should be recognized and rewarded.

So I had this crazy idea to see how much it would cost to have medals produced. They aren’t Olympic medals, but they turned out nicer than I thought they would. And I thought the blue ribbon was a nice touch.

Maureen and I sat around this week and came up with a few simple rules for getting your medal. You are encouraged to send a request if you are an Athlete With Diabetes, a spouse or partner of an AWD (see what I did there?), or an awesome parent of a kid Athlete With Diabetes.

1. The athlete receiving the award must be living with diabetes.

2. The athletic event must have taken place in the last six months. For now, we’re going with a pretty loose interpretation of the word “event”. If you feel you’ve accomplished something important to you, that’s an event. ‘Nuf said.

3. Send me an e-mail at champswithdiabetes@gmail.com. Tell me your name, name of the athlete (it’s okay if it’s you), and your address (gotta know where to send the medal). Most important, tell me what athletic goal was accomplished, and when. Extra points if you tell me how you felt accomplishing the goal. Full disclosure: I reserve the right to use your testimonial here, on Twitter, and on Facebook. Let me know if you don’t want me to use any names.

4. When you receive your medal, you need to post a photo of it around the athlete’s neck. You can send a Tweet to @ChampsWithD (hashtag: #champdathletes) or post it on the Champion Athletes With Diabetes Facebook Page.

Those are the only rules so far, though I reserve the right to change them as this thing develops. Not to make it more restrictive. To make it more fun.

I have all of 24 medals to send out. If this idea takes off, I’ll order more. If not, we’ll all forget about it by December.

So instead of asking what big thing you’re doing this month, I’m asking: What big athletic goal did you complete? Send me your e-mail today.
 
 
 

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The people we look up to.

October 28, 2013 – 1:18 pm

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.

October 25, 2013 – 9:43 am

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!
 
 
 

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