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.

#DBlogWeek – Day Five. AKA Freaky Friday!

May 17, 2013 – 7:30 am

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We’re right in the middle of Diabetes Blog Week! Myself and many others are posting for 7 (seven!) straight days. This is day five’s post. Haven’t heard of Diabetes Blog Week? Get the lowdown by clicking on the banner above. Now, on to today’s subject:

Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions? (Thanks to Jane of Jane K. Dickinson, RN, PhD, CDE and Bob of T Minus Two for this topic suggestion.)

This is an easier topic for me. Since doing the My Week With Celiac series earlier this year, I feel a special kinship with those dealing with Celiac disease.

Let me tell you… Having to eat gluten free for an entire week was hard. And it’s not just sticking to a gluten free diet. It’s keeping the gluten away from everything you come into contact with throughout your day. Every day. Does that sound hard? You bet it is.

I think that switching out my diabetes for celiac might at least get me to eat healthier. It’s no secret that my diet is a something that needs a lot of work. So going gluten free would at least get me to cut out a lot of the bad carbs. The hard part for me would be to keep from getting “glutened” by trying to eat gluten free, but not keeping everything that’s gluten free away from everything that’s not gluten free. That would be the real difficulty.

Now, has my participation in the DOC (Diabetes Online Community) affected how I treat friends and acquaintances with other medical conditions?

I’ll just repeat what I’ve said in the past: Being cursed with diabetes means that I’ve been blessed with perseverance and empathy. I think that empathy thing is especially true for everyone in the DOC. It seems to me that this community is so welcoming because either nobody else is talking about us at all, or when they are talking about us, they’re saying the wrong things. So when we see others in a similar situation, whether they’re People With Diabetes or People With Another Condition, we instantly feel that empathy. It’s a common thread that’s sewn through all of us.

And I hope that thread stays with us, and stays strong for a long time to come.

P.S. I’m off to Easton, Maryland today for the Chesapeake Bay Tour de Cure. I’ll be riding in the 55 mile event on Saturday. If, by some longshot chance, you see me tomorrow, please say hello.
 
 
 

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#DBlogWeek – Day Four. Accomplishments Big and Small.

May 16, 2013 – 9:16 am

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We’re right in the middle of Diabetes Blog Week! Myself and many others are posting for 7 (seven!) straight days. This is day four’s post. Haven’t heard of Diabetes Blog Week? Get the lowdown by clicking on the banner above. Now, on to today’s subject:

We don’t always realize it, but each one of us had come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you’ve made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small – think about self-acceptance, something you’ve mastered (pump / exercise / diet / etc.), making a tough care decision (finding a new endo or support group / choosing to use or not use a technology / etc.). (Thanks to Hilary of Rainie and Me for this topic suggestion.)

Wow, I get to say something good about myself two days in a row? That’s almost too much! Almost.

Actually, I’m having a little difficulty finding my greatest accomplishment. Not because I think I have so many to choose from. Because I don’t. I just don’t know if anything I’ve accomplished is that great. I mean, all the things I can think of seem to fall into the “gotta do it to survive” more than the “this is a great thing” category. So I think I’ll list one thing that I’m thinking of right now, and that will be “my greatest accomplishment I can think of in five minutes”. Hey, it’s my blog, I make up the rules.

I’m thinking of the time I went to my endocrinologist (the one I go to now), and told her, in my first appointment, that I was ready to go on insulin pump therapy. She didn’t know it then, but I had been thinking about pump therapy (and putting it off) for quite some time up to then. Like, years. I was finally ready to pull the trigger, and she stopped me right in my tracks. She told me that I might be a good candidate for pump therapy, but I needed to demonstrate that I had a good grasp of my BG control, counting carbs, and logging my data (including glucose readings, carb intake, and insulin dosage). And she wanted to see two consecutive A1cs at seven or below.

Well, I’m a lousy data logger when it comes to my diabetes. You could say I’m a logger lollygagger. Or something like that. But the gauntlet having been thrown, I had a decision to make: Accept the challenge, or stay on MDI (multiple daily injections). I decided to suck it up and log the data, while trying my best to manage my diabetes as well as I ever have.

In the end, the work paid off. Two consecutive A1cs at seven or below (7.0 and 6.9, if I remember correctly). Shortly after, I started on my Medtronic MiniMed Paradigm® Revel™ insulin pump. That was a little over three years ago.

Deciding to go with a pump for insulin delivery has been a life-changer for me in a number of ways. I won’t try to tell you that it’s all been fantastic. But it’s been pretty good so far. And those months where I was really keeping track of everything (even if a lot of it was on a spreadsheet– is that wrong?) really taught me about how important it is to know the math of it all. In that respect, it was an accomplishment that I’m glad to have… accomplished!
 
 
 

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#DBlogWeek – Day Three. Thanks for the memories.

May 15, 2013 – 8:47 am

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We’re right in the middle of Diabetes Blog Week! Myself and many others are posting for 7 (seven!) straight days. This is day three’s post. Haven’t heard of Diabetes Blog Week? Get the lowdown by clicking on the banner above. Now, on to today’s subject:

Today we’re going to share our most memorable diabetes day. You can take this anywhere…. your or your loved one’s diagnosis, a bad low, a bad high, a big success, any day that you’d like to share. (Thanks to Jasmine of Silver-Lined for this topic suggestion.)

My most memorable diabetes day? I’m not sure if I’m an optimist, really. But I know that I don’t like to dwell on the bad things. So here’s a look at one of my greatest days, with diabetes right in the middle of it. In a good way.

It was just a few months ago. I celebrated my 15 year anniversary at the company where I work. Whenever someone hits a milestone anniversary there, the department gets together and does a thank you, gives a plaque, and then you go back to work.

After more than a few years of ups and downs (mostly downs) between my job and my diabetes, in the last couple years, things had seemed to thaw a bit in the relationship. I’m glad they’ve changed. I’d like to think that I’m a bit less sensitive these days too, and that helps.

Still, I felt a little… nervous about reaching this milestone at work. Kind of like some old demons were left that I couldn’t get rid of. So I was left thinking: how do I take this thing that’s a little uncomfortable, and turn it into something that feels good? I thought about it for some time.

Eventually, I decided on an idea centered around Blue Fridays. Since my anniversary was on a Sunday, I asked everyone to wear blue on the Friday before. I also asked them to make a donation to the Diabetes Community Advocacy Foundation. DCAF is the organization behind the Diabetes Social Media Advocacy website, the DSMA Live and DSMA en Vivo podcasts, and the weekly #DSMA Twitter chat. And Blue Fridays! I talked to my bosses, and they were great about it. I sent an e-mail to my colleagues in Baltimore, New York, and Connecticut, and marked it on my calendar.

And on a cold Friday in February, nearly 20 of my colleagues showed up in three locations wearing blue. They contributed something like 300 dollars to DCAF (sorry, I forgot the final number). I was grateful, I was overwhelmed, and I was thrilled that I was finally able to bring my diabetes to work in a positive way.

How was I able to pull this off? Mostly because of reading others in the Diabetes Online Community and what they were doing. There are so many out there who were, and are, doing such amazing things. Such great things, in fact, that they made me want to do something too.

I know, I’m blowing my own horn here. I’m not really trying to do that. Instead, I’m trying to show that things don’t always have to be uncomfortable and contentious. Sometimes, even if we’re a little afraid to step forward (and I was, at first), when we do despite our fears, good things can happen anyway. It was a feel good day.
 
 
 

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#DBlogWeek – Day Two. Let’s write a petition!

May 14, 2013 – 8:49 am

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We’re right in the middle of Diabetes Blog Week! Myself and many others are posting for 7 (seven!) straight days. Haven’t heard of Diabetes Blog Week? Get the lowdown by clicking on the banner above. Now, on to today’s subject:

Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) – get creative!! What are you trying to change and what have you experienced that makes you want this change? (Thanks to Briley of inDpendence for this topic suggestion.)

Why yes, I do have an idea for a petition. I would like to see our community as a whole petition the Transportation Security Administration for some changes to their airport screening procedures. Among the changes I would propose:

– Providing agents with clear, up-to-date information on insulin pumps, continuous glucose monitors (CGMs), meters, and durable medical supplies. Including pictures.

– Finding efficiencies in the pump/CGM screening process. If everything goes well, we have to stand (while our traveling companions wait) as we touch our devices, then get them and the devices swabbed. Then the swabbage gets checked out with a machine that tells us whether there is any explosive residue anywhere. To begin with, this takes too long. It also saps resources that might be better used in another part of the screening process. You don’t have time to check for knives and scissors, but you have time to swab my pump and my hands and question me about something that many travelers wear every day? How is that helping to find potential terrorists?

– Providing advocacy for all affected travelers. This is remarkably important. If you’re “randomly selected for additional screening”, once you go beyond the security door, you’re on your own. Why? Is this still America (at least where I live)? Can’t I at least have an advocate in my court who can let my traveling companions know what’s going on? How about an advocate that is well versed in what is appropriate behavior, language, procedures, etc., so I don’t have to be every time I fly? An advocate who, in the event of hypoglycemia during the screening, can advocate on my behalf so I can get access to my juice boxes, Glucolifts, or Honey Stingers?

– And while we’re at it, how about requiring a specific level of training for TSA staff? Meaning, all TSA staff? I’m still waiting for the first time that I’m handled the same way in the screening process on both ends of a round trip flight. I shouldn’t be told to go through the metal detector at one airport, then through the full body scanner in another. I shouldn’t be told that I don’t have to remove my medical supplies from my carry on in one airport, then get yelled at for not removing it from my carry on in another airport on my trip home. TSA staff must be more consistent in how they handle everyone, including People With Diabetes.

So that’s it… Clear information. More efficiency when screening our devices. Advocacy for travelers (why does a murderer get an attorney when they need one, but travelers aren’t represented at all in the screening process?). Specific, consistent training for TSA screeners. That’s fair. And it’s not a lot to ask for. It would help us all to feel better while at the same time feeling safer.
 
 
 

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#DBlogWeek – Day One. To share or not to share?

May 13, 2013 – 8:50 am

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Yay!!! Diabetes Blog Week has officially begun. Myself and many others will be posting for the next 7 (seven!) days. Haven’t heard of Diabetes Blog Week? Get the lowdown by clicking on the banner above. Now, on to the first day’s subject:

Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see?

Well, um… my endocrinologist already reads my blog. Not every day, but enough that if I post something about a terrible low, for instance, I’ll probably get an e-mail within the next week or so.

What do I wish she, and my primary doctor could see about my daily life with diabetes? Probably that my life isn’t perfect, but I’m living. And I’m living a pretty good life. Sure, there are tough days, but I keep on going. It’s not the tough days that define me. It’s getting back up after I’ve been knocked down by this disease that means everything. And if I’m having a hard time getting my BG up into the hundreds or down into the hundreds, it doesn’t always mean I’m screwing up. Sometimes it means I’d be even worse off if I wasn’t trying so hard.

But honestly, when it comes to me and my endo, there’s not much I don’t share. What? What’s that? You’re honest and open with your endo? In what world does this happen?

It happens in a world where your doctor speaks your language. Where your doctor wants to hear what’s going on with you… so if updates are needed in your care, you can discuss them. It happens in an atmosphere where the object of an appointment is both to measure how you’re doing and to discuss what to do in the future to make you better. Such a universe does exist, and I encourage you to find it if you haven’t already.

Now, what do I hope my medical team doesn’t see? I hope my doctors don’t see how concerned I am about my weight. I’m doing what I can to keep from gaining, but my metabolism just isn’t helping me these days. Still, I’m doing what I can. But I could use the help of a dietician. I’m still eating a lot of junk. Anyway, that’s probably the top of the list.

Other than that, my medical team pretty much knows everything. And that’s good. My doctors can help the most when they know the most. It goes without saying (but I’ll say it anyway), two-way discussion without making a patient feel guilty is worth its weight in gold. Hope your medical team is 14 karat spectacular!
 
 
 

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