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.

Happy December.

December 4, 2013 – 7:42 am

Wow, I can’t believe it… it’s been almost a week since I published anything. Don’t read anything into that other than the fact that work has been occupying nearly all of my time, and I just haven’t had any extra moments to write.

But while I have a moment, let me just ask you to remember what’s really great about the holiday season that’s just begun.

What’s really fantastic about this time of year is the giving. And the giving takes all forms. From blog giveaways here and here, to giving and preserving life by donating to Insulin for Life, which has a big push right now to raise funds to aid typhoon victims in the Philippines.

There’s also a DiaTribe petition (go there—read & sign NOW), to urge the ridiculous people in Oregon’s Health Evidence Review Commission (this is a thing?) to stop the idea of restricting test strips for Type 2s to one, or even zero, per week to the patients enrolled in the Medicaid-funded Oregon Health Plan. Go there. Read it. Sign it. Now.

And strangely enough (or it makes perfect sense, depending on your point of view), right about now is also when a lot of people feel a little more down. Feeling a little less celebratory, and a little more like hunkering down through the holidays. For those people, I hope the rest of us can bring ourselves to reach out this December. Not to say, “Hey, you should be part of this great thing happening!”, as much as to say, “Hey, I feel for you, and I was there once, and I support you, no matter what… No Conditions”.

It is not a reach at all to say that sometimes, the best giving is when we give of ourselves. I know that from experience, and I know that from experience on both sides of that table. Empathy means a whole lot in our world. And giving empathy feels really great too.

Hope you’re enjoying your week… I’ll try to catch up to you with more very soon.
 
 
 

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Clinical Trial Conclusion.

November 29, 2013 – 8:18 am

My clinical trial ended last week, after four weeks of measuring blood glucose variability.

I spent four weeks doing BG checks on a meter different from what I use at home.

I wore the Dexcom G4 continuous glucose monitor for the length of the study. I’m still not a fan of wearing a CGM. It’s a personal decision… I just don’t like having two things attached to me at the same time. But if I wanted to wear a CGM right now, it would only be the Dexcom.

There were four days during the study that I ate the same things, at the same times, checked my BG at the same time. It was weird when those days were work days. Kind of strange going into a meeting and saying, “Hey, I’ve gotta duck out quickly in fifteen minutes. Don’t worry… I’ll be back right away”. I also got a couple of strange looks on those days when the alarm on my phone would go off in the elevator or a quiet moment at my desk (setting the alarm is the only way I’d remember everything on those days).

I made two trips from Baltimore to Charlottesville for this study (about 220 miles each way). I spent one night in the team’s research house, and one day in outpatient testing at University of Virginia’s medical center, in the Clinical Research Unit.

Oh, and I realized I hadn’t shared the study documentation. So in the interest of full disclosure, from ClinicalTrials.gov, here’s all of the information on my study.

Clinical trials are important. They help keep bad ideas from making their way to the marketplace (although, sometimes they still do); most importantly, they help good ideas get the testing they need to make them successful once they reach the general public. As always, I was very happy to participate. And I strongly encourage you to consider participating too.

Interested in participating in a clinical trial?

The USA’s National Institutes of Health has a complete list of clinical trials taking place all over the USA, and even some outside of my country. To find them, go to www.clinicaltrials.gov and enter “diabetes” into the search box. A recent search found 10,366 studies.

JDRF has a very helpful web page that lists multiple sources for registering and finding out about clinical trials. Just go to www.jdrf.org/research/clinical-trials/ to find out more.

To read more about the University of Virginia’s Center for Diabetes Technology, including staff bios and more on Artificial Pancreas technology, visit the center’s website at www.medicine.virginia.edu/research/institutes-and-programs/cdt/the-center-for-diabetes-technology-at-uva.html
 
 
 

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Happy Thanksgiving 2013.

November 27, 2013 – 9:50 am

TY

It’s a tradition in our family that every year at this time (the Thanksgiving holiday here in the States), we pause and mention something meaningful in our lives that we are thankful for. We go around the table, and everyone, young or old, optimistic or pessimistic, offers a Thank You for something significant.

Today I offer a giant Thank You to the Diabetes Online Community.

If you knew me, really knew me, you’d know I’m a very jaded individual. I never expect things to be as good as advertised, because they never are. My experience tells me that.

I know the DOC is growing larger by the day, and that’s good. The more voices we can add to the discussion about living with this chronic condition, the better. I do not expect those voices to always sound the same, or be focused on the same thing. I realize that even in the pursuit of positive things we can all agree on, sometimes personalities will clash and feelings will get hurt. Since the community is growing larger, it seems more likely that we’ll encounter an opposite viewpoint from time to time, or even an outright troll now and then. After all, one percent of 100 is 1. One percent of 10,000 is 100.

But I also know what my life was like before I discovered this thing, whatever it is. I know how I felt. I know how alone I felt. Like the saying goes, loneliness is everything it’s cracked up to be. What’s weird from my viewpoint is: I’m usually okay with doing things on my own; but doing them with understanding and support and encouragement from others in the same boat? It’s a lot easier, and it’s worth more to me than I’m capable of describing right now.

I could list hundreds of individuals and organizations that have made such a difference for me over the last two plus years. I would, if I had another couple of weeks to list them all. The list is that long. On the other hand, I think I could list maybe… maybe… two who I am less than enthusiastic about. But even those two are important to me, because in the end, they want what I want too. And in nearly every critical comment, I see at least one small thing I need to examine with a fresh eye, consider with a different viewpoint.

So on this Thanksgiving 2013, to the Diabetes Online Community, let me say:

Thank You—Gracias—Merci—Arigato—Danke—Toda—Mahalo


The world, in fact, is big enough for all of us. Thank you, DOC, for making it big enough for me.
 
 
 

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Weird middle-of-the-day low.

November 25, 2013 – 9:22 am

On Friday, Mike Hoskins over at Diabetes Mine wrote about how hypoglycemia (low blood glucose) feels to him. If you have diabetes, you have your own experiences with hypoglycemia. Nearly everyone’s reaction is different. I almost left a response after reading Mike’s post, but I thought I would write about it here instead.

This is a case where pre-bolusing didn’t work for me.

Friday morning, I was in a hurry to get to work, and I ran out the door without preparing my lunch. This isn’t something I do very often; only about 8 or 10 times per year, I’d guess. Anyway, to save time, I ran out the door with the expectation that I would just grab lunch at a local deli near where I work downtown.

So lunchtime comes, and my BG reading says 82 mg/dL. Not too bad, right? I know I’m buying out for lunch, and that usually comes with more carbs than my normal lunch. Hence the pre-bolus. I knew what I was going to order, and I bloused for it as I was headed downstairs.

I got downstairs and walked the two blocks to the deli, ordered a grilled ham and cheese and a bag of chips to go (this is why I don’t eat out for lunch often). I got my order and started walking with it back to the building where I work. So far, so good.

But when I got back to work, the fire alarms were sounding and I was told I couldn’t go back into the building.

Now I start to worry. I’m worried because I know hypoglycemia is either here or close. And immediately, I started to form contingency plans in my head:

– What if I can’t get back into the building in the next few minutes?

– What if I’m expected to walk down the street and gather with my co-workers at our assigned evacuation spot?

– What will my co-workers think of me if I start gobbling down my lunch in front of a potentially serious gathering of hundreds?

– What if my glucose gets too low before I can figure all this out?

– What if it’s some other kind of emergency and my co-workers are stuck inside while I’m stuck outside? Now I’m concerned about them. How can I help?

To answer these questions, my mind started racing through all kinds of potential scenarios. Sometimes when I’m low, this type of thing races through my head like wildfire in a pine forest. My mind knows that I’m supposed to eat, eat, eat. But that part of my instinct was trying to be squashed by something that almost borders on paranoia.

After a couple of minutes of waiting, but what really seemed like half an hour or so, the alarms were turned off and I was able to get back into the building and enjoy my lunch. A weird middle of the day, for sure.

What does this episode tell me? It tells me that I need to do a little self-examination, and see if I can come up with ways to trigger my brain to eat in those circumstances rather than worry about anything else. For me, I know that hypoglycemia sometimes impairs my judgement. But if I can focus on something, anything that helps me remember what I have to do even while mind games are going on inside my head, I’ll be all right.

In the meantime, you better believe I packed my lunch today.
 
 
 

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November DSMA Blog Carnival: What’s the one thing you would share?

November 22, 2013 – 9:26 am

I’m encouraged by the diversity of answers to the one simple question that’s the subject of the November DSMA Blog Carnival:

What is one thing you would tell someone that doesn’t have diabetes about living with diabetes?

My first reaction is: I can only pick one? That’s difficult.

Because the first thing I would tell someone who isn’t living with diabetes is that I’m the same person today that I was before my diagnosis. I have the same hopes, dreams, and desires. I believe an incredibly wonderful life can be lived in spite of, and sometimes because of, diabetes.

If I can at all avoid it, I don’t let this disease get in my way. Sometimes it tries to shake my confidence with an unexplained high or low glucose, causing me to shift priorities from doing what I want, to doing what I have to do. It might delay me. But it doesn’t stop me. Diabetes is not my boss.

I can eat the same things today that I ate before diagnosis. I might eat them in smaller amounts now, and I might make healthier choices, and I take insulin to account for the carbohydrates I’m consuming. But I really don’t feel like I’m missing out on anything.

I still train and participate in athletic events, just like I did 22 years ago. Of course, I’m 22 years older, and I don’t look as good as I did then, but who cares? I only care that I can keep moving, stay active, concentrate on what I can do, rather than what I can’t.

Something different about me is that I’m more interested in learning new things than I was back then. I’ve learned so much about my diabetes, and diabetes in general, over the past year and a half. And it’s made me a smarter, more well-rounded, happier individual. I feel more in control of my life.

Add it all up, and you’ll see that I’m a person with diabetes… not a person suffering from diabetes.

Now, if there was a second thing I could tell someone that doesn’t have diabetes about living with diabetes? I would tell them about the amazing amount of work it takes to live this life. I would tell them how no one should have to go through what I do. I would share with them stories about how some find it all overwhelming, and how we all need to do more to reach out to those people while simultaneously searching for better solutions.

Because for me, living with diabetes is not only about living well… It’s about helping others to live well too.

This post is my November entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetescaf.org/2013/11/november-dsma-blog-carnival-3/
 
 
 

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