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.

Diabetes Podcast Week! With the vivacious, committed, and reliable Merle Gleeson.

February 2, 2016 – 9:11 am

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You read that right… it’s Diabetes Podcast Week!

Brainchild of Stacey Simms at the Diabetes Connections podcast, this is a week where a dozen diabetes podcasters will be uploading new episodes and helping to raise money for the Spare a Rose, Save a Child campaign. Listen to the beginning and the end of today’s episode of Diabetes By The Numbers for more information on the Spare a Rose, Save a Child initiative and what an amazing difference it makes for children living in developing countries throughout the world.
Insulin should not be a luxury.

Today’s episode of Diabetes By The Numbers features the Superwoman known to her friends and compatriots as Merle Gleeson. In our opening round question, she describes herself as vivacious, committed, and reliable. She’s that and a lot more.

Merle has been living with Type 1 Diabetes for over 50 years. She’s also a Champion Athletes With Diabetes medal winner. Around nineteen years ago, her and a few friends started something called the Type 1 Diabetes Lounge, which holds regular meetings, fundraisers, parties, and more in the Chicago area. It’s quite an operation, and if you’re looking to kick start a local diabetes meetup or amp up the meetup you already have, you can do a lot worse than listening to Merle.

Here then is my conversation with Merle Gleeson, and a special message about Spare a Rose, Save a Child.
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Help save the life of a child living with diabetes in a developing country by donating to the Spare a Rose, Save a Child campaign today: www.p4dc.com/spare-a-rose/give/
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Reference Material – Click below for more information on this topic

Merle Gleeson is founder and CEO of the Type 1 Diabetes Lounge in the Chicago area:
type1diabeteslounge.com/

More about Diabetes Podcast Week can be found at Stacey Simms’ blog:
staceysimms.com

Spare a Rose, Save a Child is an initiative of Partners for Diabetes Change. To find out more about Spare a Rose, Save a Child:
www.p4dc.com
 

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A few thoughts on 25.

January 29, 2016 – 9:12 am

It was some time Wednesday night when I realized:

This weekend, I will pass the 25 year mark of living with Type 1 Diabetes.
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Like many other diaversaries, this one has snuck up on me. I mean, I knew it was coming, and then I got busy with other things and forgot about it. Now I’m sitting here on Friday wondering what it all means.

I admit that though I was 28 years old at the time, I still don’t remember much about the day or days surrounding my diagnosis. Wait… that’s not true. I remember a lot.

At my first appointment with a new doctor, I went in for a complete physical, told him what I had been dealing with for several weeks (all the typical onset-of-diabetes symptoms), and he got a blood and urine sample. About two hours after I saw him, I received a call from the office asking me to come back first thing the next day. I did, and that was when I received the news that I would be living with Type 1 the rest of my life, and oh, by the way, I had a high level of ketones in my system, though I didn’t understand how serious that was at the time. I still expected to go to work later that day. One thing I’ll never forget is the look from my doctor after I asked him when he wanted me to go to the hospital. I thought he would say, “Let’s get you in next week, maybe Tuesday”. Instead, his eyes got big and he practically shouted “Now!”. The thought of it still makes me laugh.

After three days in the hospital I was sent on my merry way, and I started this long 25 year trek that puts me in the spot where I am now.

I was so different then. Different city, different job, different look, I still had some hair left on top, and a lot more energy. I knew practically no one else living with diabetes and never (I thought) came into contact with anyone else living with diabetes. What this does is skew your perspective. Having no other influences, I tended to trust everything I heard about diabetes, from family members, employers, and doctors too. By and large, they were way off the mark.

They were off the mark partly due to either incorrect or outdated information with regard to diabetes. But they were also off the mark because they didn’t know my diabetes. For my part, I didn’t know that my diabetes and how I managed it might differ from how someone else lived with this disease. I largely ignored my diabetes because everyone else did. I wasn’t in the emergency room or in danger of organ failure. And most of all, I wanted so desperately to live my life without it being pointed out that I also lived with diabetes.

As I grew older, I realized that regardless of what I wanted when I was 28, there was indeed no separating me from my diabetes. One of the critical things I discovered was that that’s okay. Diabetes sucks, but it’s a part of my life, and I won’t, I can’t, be ashamed of that. If I buy into that, it will kill me inside.

You may be wondering whether I’ll be filing paperwork to ask for a 25 year medal from Joslin or Eli Lilly. I’ve thought about it, but to be honest, it’s not a huge priority for me right now. If I get part of a day free where I can compile everything and send it in, okay. If not, meh.

It’s not like I feel I don’t deserve a medal. I do. I even think it would be kind of cool. But I’m also reminded of the people out there who were diagnosed a year ago, or five years ago, or forty years ago who have been living their own version of diabetes hell, all by themselves, ever since diagnosis. Those people deserve a medal too. What makes me more worthy?

What about the people who lived with diabetes for some time, whose lives were tragically cut short due to hypoglycemia or ketoacidosis or some other horrible, unjust happening? I cannot accept something as trivial as a medal without remembering those who were never rewarded, and yet paid the ultimate price.

Okay… positive spin… This weekend marks a milestone, but I want and expect to celebrate many more milestones in the future.

Shortly after diagnosis, I read that a man in the United States living with Type 1 had an average life expectancy of 59 1/2. I know that number should probably have skewed upward since then. But for me, 59 1/2 plus many more years has been a goal since diagnosis. At 28, that threshold seemed very far away. Today, it’s less than six years.

More goals, more milestones, and more celebrating them. Why the hell not? Enjoy your weekend. I’ll be looking back on the great and not-so-great things about my diabetes at 25. Feel free to list yours below.
 

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Decision 2014… 2015… 2016? Finally!

January 27, 2016 – 9:08 am

Remember that whole “Decision 2014” thing I had going on during the year that my Medtronic Revel pump warranty expired? Should I go with a new pump? What am I looking for anyway? What should I do?

Well, Decision 2014 became Decision 2015, which finally became Decision 2016:
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Stop staring at my late afternoon basal rate.

Okay, so I chose the Animas Vibe as my new insulin pump. I think I’m way past the point of detailing why I didn’t pick another pump, and besides, those companies have lots of employees who have families with mouths to feed, and some of them I know and like and admire, so I’m not going to go into that. If you really want to know, send me an e-mail and I’ll tell you, but I’m not blasting it over the internet for everyone to see.

Instead, I’ll talk about me specifically with the Vibe.

First, even though this pump is generally marketed as a pump with a CGM integration, I chose to only do the pump purchase right now. Why? Because the CGM that’s integrated with the Vibe is the Dexcom G4, which is really good, accurate, and already one generation behind the current model. In the next few weeks I’ll be submitting paperwork to try to get the Dexcom G5. I’m hoping that if the G6 makes its way to the masses sometime in the next year, I’ll be able to upgrade to that. I just didn’t want to be two generations (or more) behind before my insurance would pay for a new CGM.

As far as the pump is concerned, it’s working pretty well so far. Oh, and no, I haven’t been through training with the pump yet. I had it programmed, on, and working within 45 minutes of cracking the box open. I do not necessarily recommend this practice to everyone.

Anyway, the pump is working well. My insulin needs seem to be less than they were with the Medtronic pump over the last year, when it seemed like I was having to bolus extra for every meal just to keep my BGs in a decent range. As with many things diabetes, there may be truth in the fact that the old pump was fighting to keep up, and there may not be any truth to that at all. Let’s see how the next few months go.

I’m getting used to the ezCarb bolus feature, which is pretty simple to work out once you get used to it. I’m doing my best to keep my fingers off of the instant bolus button (my terminology) on the side of the pump. Why I can use this to bolus by the unit without any calculation, but I have to perform several clicks to get to the bolus calculator in the pump is beyond me. I can see a less determined person guessing and instant bolusing all day. And possibly paying the price for it later, if a calculated guess is wrong.

I really like the button on the top of the pump, which gives me an instant insulin on board reading, though I wonder if I can get that to display on the main home page of the pump. I don’t think so, but I haven’t read everything in the pump manual yet.

This pump also has a smaller reservoir than most pumps on the market. Just 200 units, rather than the 300 units offered by Medtronic and the t:slim (they also offer even larger capacity options). I thought that would bother me a lot, but so far, it hasn’t been a big deal at all.

I like having a metal belt clip. I don’t know if it will get bent out of shape eventually and not work as well over time, but if not, I’ll be happy to not have to order a new plastic one every five or six months.

One other thing: This is my choice. This decision was made after careful consideration, and I’ve chosen something that works for me and my diabetes, and how I want to manage said diabetes. Your diabetes may be different, so your decisions may be different, and that’s okay. It’s why we need more choices.

To sum up, I like what I’m experiencing with my new pump to this point. It’s not everything I wanted, but no pump on the market has everything I want right now anyway. In the end, I have something I can live with for four years, after which time, an artificial pancreas solution may be available. So while I’m sad that there aren’t better options for insulin pumpers right now, I’m excited to see just what the next few years brings.
 

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Tropical Storm Jonas.

January 25, 2016 – 12:31 pm

I have a non diabetes-related post today. A few photos of the winter storm that hit the Mid-Atlantic and Northeast parts of the USA over the weekend.

We get storms like this every few years in my part of the world; some years, like last year, we get almost no snow at all. Then we’ll all of a sudden get a monster storm that dumps a couple of feet on us all at once. In this case, the official number was 29.8 inches of snow, in about 28 hours. This storm was also accompanied by tropical storm force winds that caused some major drifts, like around my truck. After I dug everything out, I had to pull my truck back in the driveway so I could shovel away all the snow that was blown under the chassis.

My glucose did not suffer from the storm… on Saturday, while it was all coming down, I went upstairs and put in a hard 50 minutes on my spin bike. On Sunday, I was out for literally hours shoveling things away from the driveway and the walk. We’re told we might get a snow plow down our street on Tuesday. Almost 72 hours after the storm is finished. Lots of roadways to plow, and lots of tired plow drivers out there. But cabin fever hasn’t sunk me yet. I still have coffee and enough food to get me by, and I’m lucky to have power, so I won’t freeze. Yes, I’m a lot luckier than some others out there right now.

So here, kind of randomly, are some photos from the storm and the shoveling. Wherever you are, I hope you’re warm and comfortable today.
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TWO Champion Athletes with Diabetes.

January 21, 2016 – 9:10 am

I was thinking the other day, it’s been way too long since we’ve posted a story about one of our Champion Athletes With Diabetes medal winners. Let’s rectify that.

Today, I’ve got two great stories… one about an 11 year old from Belgium, and one about a 15 year old from India. That’s right… Europe and Asia are in the spotlight today.

Zeno is a stellar football player in his home country of Belgium, where he lives with Type 1 diabetes. You know, football that is actually played with your feet, and not your hands (unless you’re the goalie). The rest of us call it soccer. Zeno turned eleven back in November, and this past summer, he competed and won as part of a team that captured the European Champions League under 11 championship. Later, his indoor team won the Limburg trophy as the top under 11 indoor team in Belgium.

His father Ronny says that Zeno’s training is pretty intense. He’s training four days a week, and between the training and the matches it can be a challenge to keep his glucose in a stable range. Which he does very well:
“During the game in the weekend, we have noticed we need to put more attention on the moment of the game (in the morning or in the afternoon) and the place of the game ( Home or away). Also the food is important before and during the game.

We, his parents and his brother of 13 years, are full of respect for his individual efforts to maintain his sugarlevel.”

Zeno’s brother Milan has been instrumental in helping with everything too. As a result, I sent him a medal as well. Because support is super important.
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This truly has been a team effort. Congratulations Zeno and Milan!

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Fifteen year old Jahan is a pretty awesome badminton player. In Mumbai, where Jahan lives, badminton is a pretty big sport. He also lives with Type 1, and just like Zeno, he doesn’t let that slow him down. In fact, even though he’s just 15, he’s competing in under 19 age group events. He was recently part of a doubles team that finished second in the Mumbai Suburban District Championship. And he’s now on the Mumbai district under 19 team, where he will compete at the zonal level very soon.

As you can see from the photo, he’s pretty fit for a fifteen year old. His father tells me he was excited to receive the medal. We’re excited to see Jahan succeed.
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How about you? Have you been knocking off your athletic goals while living with diabetes? If you are conquering diabetes at the same time you’re conquering your competition, I have a medal just like the one above for you too. Here’s what you do to get one:
 
 
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. I will not use your name if you don’t want me to. As always, I will never share private information.

4. When you receive your medal, it would be great if you 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.
 
 
I salute you, Champion D-Athletes. It takes a boatload of courage to compete, or maintain an exercise routine. Heck, sometimes, it’s everything we can do just to get out of bed. Getting out of your comfort zone and taking that brave step is something that should be recognized and rewarded.

If it’s a big deal to you, it’s a big deal to me too. I want to support you, or support the Athlete With Diabetes in your life. Don’t wait… send me an e-mail for your award. C’mon… there are plenty more where these came from.
 

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