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.

Confession time: CGMs.

March 4, 2015 – 10:34 am

So with all of this talk about travel and safety and doing the right thing, I’m still not a consistent continuous glucose monitor user. Here’s my confession:

I don’t want to be a CGM user.

I hope my endocrinologist isn’t looking at this today (she does look in every once in a while). But she’s already familiar with my resistance on the subject. Let me see if I can explain this. I’m sure all of the points I’ll make here can be shot down with common sense wisdom that just about anyone living with diabetes can understand. But there are a few reasons why I haven’t made CGM use habitual.

When I first started using an insulin pump five years ago, I also started wearing a CGM all the time. The CGM I was using was horrible; it had accuracy issues, and it was always painful to insert. It was so frustrating that after about nine months, I gave up on it. I won’t go into it anymore, but I think that was where my reluctance started.

Actually, the biggest, most overriding reason for not wanting to wear a CGM is that I do not want one more thing attached to me 24/7/365. That’s not to say that showing a CGM transmitter in public, at the pool or in the shower at the gym, would cause me embarrassment. Those days are long over. I couldn’t care less about that, and I certainly didn’t have a problem with it when wearing a CGM during clinical trials.

No, the problem of “one more thing” is bigger than that. It’s not only wearing something else all the time. It’s having to plan out site changes for two devices rather than one. It’s having to pack supplies for two devices rather than one. It’s fighting with insurance profiteers over coverage of two devices (and supplies for those devices) rather than one. It’s having to carry around a receiver in my already overcrowded pockets. It’s dealing with real estate issues earlier because I’m constantly violating my body in two places at a time instead of one.

I think there might also be, hidden somewhere deep, an aversion to gathering data for my endocrinologist to go through and find fault with me. My current endo is not like that at all, and I know she would never shame me if my numbers didn’t look so great. However, old wounds take time to heal. On the other hand, this would probably be the easiest place for me to give a little. In reality, I know this would not be an issue, so why should I continue to make it one? Patients are not always perfect either.

After going over my concerns with my endo, she suggested that instead of wearing a CGM full time, maybe I use one for ten days or two weeks in between appointments. That way, she could at least get a little data on how my BGs were trending throughout each day. This seems reasonable, and not too intrusive. But has that made me start the process over again? No. Old wounds take time to heal, and old habits die hard.

I’m not sure I’m solving anything here. But this is how I deal with issues like this: I talk about them, to myself, family, and friends, and in doing so, I often talk away some of the concerns (read: fears) of change. I know that CGM technology is better, and with the rollout of Nightscout and Dexcom Share, many people are able to add an additional layer of security in the advent of a hypo away from home. Why wouldn’t I want to make that a part of my care too?

I don’t think I’m there yet. But I’m getting closer. Secretly, I’ve even made lists of who I would share my data with… even “backups”.


 
 
 

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Be safe, take advantage of the opportunity.

March 2, 2015 – 9:30 am

Since this blog is about diabetes, naturally, part of it is going to be about my diabetes. Today, it’s about my diabetes and the challenges of travel. I’ve spent a fair amount of time talking about diabetes and travel on Twitter recently, and a little on Facebook too. Sorry about that. This is what’s happening in my life right now.

First, what this post isn’t: IT IS NOT MEDICAL ADVICE. Please check with your physician, endocrinologist, or diabetes educator before traveling, and certainly before making any changes in your diabetes routine.

Now, what this post is: It’s a few things I’ve learned over the years. Not exactly what to do for specific circumstances, but rather some things to keep in mind as you travel from place to place. Feel free to add to the list by leaving a comment below. More information is always better than less.

1. Check with your physician, endocrinologist, diabetes educator, or all three before you travel. A no brainer, right? See “What this post isn’t” above. This is especially true if you haven’t traveled for a while. Your medical team may be able to give you expert advice that would take you hours to gather via blogs and other social media. And they can give you a copy of your prescriptions, which is a must to have wherever you are.

2. Changing time zones? Determine a “best practice” scenario for updating pump settings, basal amounts, and dietary needs. I don’t have great advice here, and it’s not backed up by science. Do research (along with your medical team) to find out how to best handle time zone changes, including the possibility of making no time zone changes at all, either with devices or routines (a lot of athletes do this). Again, it’s not backed by science, but what I do is change the time on my pump to match where I’m going when I’m about halfway through my trip. A six hour flight across the country? I change the time to match where I’m going at around the three hour mark. I can’t tell you why this works for me, but it does. Find out what works for you (read #1 above again), and if you can, make it routine.

3. Check your BGs early and often. Travel usually involves a lot of walking, even if you’re just making your way through the airport. Also, a change in time zones, eating out for every meal, and other influences (drinking, anyone?) can make for weird and wonky blood sugar numbers. I have learned, the hard way sometimes, that testing more than I do at home is not only common, it’s necessary when I’m on the road.

4. Never, ever, go to bed with a low or even semi-low blood glucose reading. I don’t care if you’re traveling with your spouse. I don’t care if you’re traveling with someone else. I don’t care if you’re staying at a friend’s house. We can’t always avoid hypoglycemia. But if we’re sure that we’re in a good range when we go to bed, even if the number on the meter is a little high, we’ll be much less likely to encounter a middle-of-the-night low, a disruption to our time away, and a disruption to the time spent with the person we’re with. Again, this is something I’ve learned the hard way. Don’t make my mistakes.

To provide additional peace of mind, consider adding a continuous glucose monitor to help you manage your BGs on the road. Or, if you’re using a CGM now, consider taking it to the next level and employing Nightscout or Dexcom Share technology.

These four things to remember go in addition to the things we already know: Pack enough supplies and medications, wear medical alert information (it may save your life as it has saved mine), and (in the USA) know your rights as a traveler.

As we all know, diabetes is not simple, and it’s not easy. That doesn’t change just because you’re away from home for a few days. In fact, it complicates things. But that is no reason to avoid travel. For me, I think the emphasis needs to be on staying safe and being as ready as possible for anything that might be outside the norm.

Doing so allows me to take advantage of every opportunity possible when I travel. I love to travel. I don’t want to miss out on anything. Managing diabetes on the road can be very different from how I manage things when I’m at home. Remembering these four simple things helps to provide peace of mind for myself, to those I’m traveling with, and those who are waiting for me at home.

Have any outside-the-box traveling and diabetes tips? Feel free to leave yours in a comment below.

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Four things (times 11)

February 27, 2015 – 5:19 pm

I had something already written and ready to go today, but after I read this over at Scully’s blog and then this over at Jeff’s blog I thought, what the hell, I’m game.

For lack of a better phrase, here are my top 4 lists:

1. Four names people call me other than my real name.
1. Steve (of course)
2. Uncle Steve
3. Honey
4. Hey You

2. Four jobs I’ve had.
1. Delivering papers (when I was 14, I made four dollars each week for delivering a local weekly paper)
2. Radio announcer, program director, freelance announcer, copywriter (I did all of these jobs at one time or another in my late teens into my mid 30s)
3. Retail manager (mostly, I set up, managed, and sold men’s suits for a discount chain in the midwest, again, from my mid 20s through my mid 30s)
4. Senior systems analyst (when I quit retail, I wanted to go in a different direction. I’ve been at my current job for 17 years)

3. Four movies I’ve watched more than once
1. Field of Dreams
2. Guess Who’s Coming to Dinner
3. Lillies of the Field (I’m a Sidney Poitier fan… what can I say?)
4. Any of the Thin Man movies (I’m also a big William Powell and Myrna Loy fan)

4. Four books I would recommend
1. Balancing Diabetes by Kerri Sparling (see what I did there? It’s a great book!)
2. The Grapes of Wrath by John Steinbeck (a tough but great read)
3. The Frontiersmen by Allan W. Eckert
4. 102 Minutes by Jim Dwyer and Kevin Flynn (another tough read, but eye-opening)

5. Four places I’ve lived
1. Cincinnati, Ohio (born and raised there)
2. Columbus, Georgia (during that radio phase back in the 80s)
3. Dayton, Ohio (not far from Cincy, but it counts)
4. Baltimore, Maryland (where I’ve lived for the last twenty years)

6. Four places I’ve visited
1. London, England and Brussels, Belgium (where I was three weeks ago)
2. Ireland (a memorable trip I took a little over ten years ago)
3. Jamaica (on my honeymoon)
4. San Francisco Bay area, California (where I am right now!)

7. Four things I prefer not to eat
1. Beans
2. Chili with beans
3. Mushy peas (I noticed it on a lot of menus in London, but… no)
4. Any type of egg other than scrambled (they’ve made me gag since I was a kid)

8. Four of my favorite foods
1. Pizza
2. Cincinnati chili (which is usually eaten with pasta or with a hot dog– carbs,anyone?)
3. Pie (any kind except the kind with merengue)
4. Farm-fresh produce (especially tomatoes and corn on the cob)

9. Four TV shows I watch
1. The Daily Show with Jon Stewart
2. Major League Baseball (whenever it’s on and ESPECIALLY when the Reds or Orioles are on– see #5 above)
3. The Big Bang Theory
4. Parking Wars (especially the episodes from Philly– guilty pleasure)

Four things I’m looking forward to this year
1. Diabetes UnConference, March 13-15
2. Visits from family
3. Spending time with friends, at home and on the road
4. More chances to advocate for those living with/affected by diabetes

Four things I’m always saying
1. “Can you e-mail that to me?”
2. “Sorry, I don’t have a smart phone.”
3. In response to the question: Are you low? “I don’t KNOW if I’m low unless I check!”
4. “I support you… no conditions.”

Got anything you’d like to list?

This has been a fun exercise for a Friday. I hope your weekend goes well, and is free of snow unless you don’t want it to be.

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You can’t always see NED coming, but you are not alone.

February 26, 2015 – 11:05 am

So many of us are familiar with NED. We know him by his first name.

Like the obnoxious uncle who swings by for an afternoon then stays for the weekend, NED can be hard to get rid of. He may only be around for a short while, but NED is always lingering in the back of our minds.  NED’s effects are often devastating and long-lasting.  Often, the guilt and shame that comes with a visit from NED gets swept under the rug, adding pressure to the lives of people who already have more pressure on them than they need or deserve.

We need to put NED in his place.

It’s National Eating Disorders Awareness Week.

Why am I using space in a diabetes blog to talk about eating disorders?  If you live with diabetes, or if you even know someone living with diabetes, you are familiar with eating disorders.  Our wacked-out endocrine system that causes strange blood glucose numbers can also cause wacked-out eating habits. If you live with diabetes, you know that. It’s sucky, but it’s natural.

Let me tell you:  We all need to be part of a solution that uplifts and inspires success for everyone working their way through difficult health issues. And eating disorders are a very difficult health issue.

If you’re living with diabetes and dealing with eating disorders, you are not alone.

Visit nedawareness.org and get started on the road toward a happier, better, healthier life right now.

If you’re living with Type 1 diabetes, you can also visit wearediabetes.org and reach out to people who provide support and advocate for others who are going through what you’re going through.

As always, please remember:
You are not alone. I support you… no conditions.
 
 
 

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Congratulations Ryan Reed.

February 23, 2015 – 10:22 am

I got to interview NASCAR Xfinity series driver Ryan Reed last year, and to be honest, it wasn’t that great an interview. We were both pressed for time, and though I got my questions answered, it wasn’t a great experience. That’s the way it goes sometimes. He did send me this cool photo:
Reed

Now the good news: Ryan Reed, one of our Champion Athletes With Diabetes medal winners, was the winner of the Florida 300 at Daytona International Speedway Saturday.

Ryan got a little help from teammate and second-place finisher Chris Buescher, went around Brad Keselowski on the final lap, and got his first series win on the biggest stage in his sport.

Afterward, as he climbed out of his car and answered the first question from an interviewer, he had this to say:

“Four years ago I was diagnosed with Type 1 diabetes, thought I would never drive a race car again, and now I’m standing in Victory Lane at Daytona…”

He also managed to say this:

“This is not only for me and my family, but every kid that gets diagnosed with diabetes – or anything that says you can’t do something. Just go out there, overcome it, win it, and do the best you can.”

To me, that’s worth more than my crummy interview.

We all have our chance to advocate for others living with and affected by diabetes. Ryan Reed got that chance before a national audience Saturday night, and he took advantage of it. And I’m grateful.

He’ll be advocating again on Saturday in Atlanta.

Here’s a look at the final two laps, plus the beginning of his interview just after the race:

 
 
 

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