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.

Testing continues. And this time I mean it.

October 23, 2013 – 9:44 am

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.
 
 
 

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It happens to all of us.

October 21, 2013 – 4:49 pm

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

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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.
 
 
 

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One thing at a time.

October 18, 2013 – 9:10 am

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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Recipe! Roasted Turkey Thighs.

October 16, 2013 – 9:37 am

This is not my own recipe… But it’s now mine in the respect that I’ll be going back to this one for some time.

Truth be told, there are two recipes not mine that are now mine in this post. Each with my own spin, based on what I had available at the time of preparation.

First, let’s talk about the salad. I saw Nigella Lawson do something like this on TV, then I added my own twist to it:

Begin with a couple of leaves of red leaf lettuce, then use fresh parsley for the rest of your greens. To that, I added little half-moon slices of red oinion, green olives, and thinly sliced peaches. On top I added some feta cheese. I served it with a peppery lemon vinaigrette (it sounds a lot fancier than it is), and it was delicious.

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Now, let’s talk turkey.

There was a sale on turkey thighs at the grocery store. I am not a turkey person, never have been. But The Great Spousal Unit is most definitely a turkey person, and I wanted to do something nice. Since I had never cooked turkey before (true), I went searching on the internet for an easy, but good looking recipe. I found it here. I only deviated slightly in the ingredients. The link has the recipe and some great in-progress photos, but if you don’t want to click over there, here’s the recipe, with the finished product below.

Herb Roasted Turkey Thighs Recipe

2 turkey thighs
A handful of garlic (I used 3 cloves), peeled
A handful of pearl onions, peeled (I didn’t have pearl onions, so I went with about half a red onion)
4 small potatoes, cut into chunks (I used two small-to-medium potatoes)
2 cups unsalted chicken broth
2 sprigs of sage
2 sprigs of rosemary
2 sprigs of parsley
2 bay leaves
a sprinkle of olive oil
salt & pepper, to taste

Preheat oven to 400°F. Let turkey thighs sit at room temperature for about 30 minutes before cooking.
Gather a few leaves from each herb sprig and finely chop to make about 2 teaspoons each. Rub chopped herbs onto each side of the turkey thighs along with a sprinkle of salt and pepper. Place thighs skin side down in a deep roasting pan. Bake for about 30 minutes.

Turn thighs over, then add potatoes, pearl onions, garlic, bay leaves and herb sprigs. Pour in broth and sprinkle all with a little more salt & pepper, then drizzle some olive oil on top. Roast for another 30-40 minutes, until thighs are done and potatoes are tender. Stir the potatoes once during roasting. Remove pan from oven, let thighs and potatoes sit covered with foil for about 20 minutes before serving. Place turkey and vegetables on a serving platter.

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Estimated carb count: 30 grams (though you might want to account for a little fat, since turkey thighs have a little more than say, breast meat)

Believe me, this tasted as good as it looks. If you luck into a sale like I did, this is a super autumn meal, even if you ditch the potatoes and just go for the salad and turkey.

 
 
 

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October DSMA Blog Carnival. What would you say?

October 14, 2013 – 9:57 am

One of the hot issues in the DOC these days is test strip accuracy. It’s exciting to see outside agencies beginning to take note. With that in mind, let’s revisit our September 4th chat “Test Strip Accuracy” and talk about . . .

What would your comment be on meter accuracy at the Diabetes Technology Society meeting?

Well, I could say a lot of things. But I’d really want to say the perfect thing, of course. To do that, I think I’d have to point out that while we have lots of technology at our disposal, not all of it is the best technology available.

Just like many things in life, Diabetes often comes in degrees and layers of differences. We all know this, and we reflect that in our choices of tools to help us manage our glucose. Sometimes, rules in other countries make something available or not available to us, and we’re stuck with what we have. Here in the USA, we sometimes encounter the same thing thanks to insurance guidelines and medicare.

What that means is we’re all using different meters with different strips, many of which aren’t nearly as accurate as they should be. As accurate as they need to be. So we need the Diabetes Technology Society to understand these simple things:

– Lives depend on the accuracy of our devices.  Let me repeat:  Lives depend on the accuracy of our devices

– Continued accuracy, or lack of it at current levels could cost lives

– The proliferation of diabetes technology does not automatically equate to improved quality of the devices we use

– Quality and accuracy of our diabetes devices always needs to improve.  Ninety-nine percent accuracy still won’t be good enough when our lives are at stake, and right now we’re a long, long way from ninety-nine percent

– Ongoing, continuous post-market inspection of meters and strips, and holding manufacturers responsible for shortcomings will be a huge leap forward in improving and saving the lives of People With Diabetes

That’s what I would tell them.

If you’re living with diabetes, or caring for someone with diabetes, you know the importance, the hard work, of maintaining glucose numbers within a range that helps us to continue leading meaningful lives. Shouldn’t we expect at least as much from the Diabetes Technology Society, the FDA, and the manufacturers of our devices?

This post is my October entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetescaf.org/2013/09/october-dsma-blog-carnival-3/
 
 
 

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