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.

My big news isn’t so big after all.

October 8, 2013 – 9:04 am

I’ve been teasing for a couple of weeks regarding big news on the horizon. In short, I was hoping to be a part of Artificial Pancreas testing later this month. Sadly, that is not going to happen.

It’s not all bad news. The study requires participants to have a hemoglobin A1c between 6.0 and 9.5. Mine came in at 5.9. So I’m out because I’ve been working out too much, aggressively attacking abnormally high BGs, and losing a little weight (3 pounds in the last month).

I had blood drawn last week and the result came in under the 6.0 mark. They tested again yesterday to see if there was any difference, and that’s when I got the 5.9.

It’s strange– while I was waiting for the result yesterday, and after I got the result, I felt very much like I used to feel when my A1c would be up in the 8’s. Like I screwed up somehow. Like I’ve failed and I’m entirely to blame.

But how can I be pissed about a 5.9? After having a night (and a few Pabst Blue Ribbons) to think about it, I think the thing I’m really bummed about is the fact that it may be too late to get someone else into this study. I hope not. I don’t want the AP team, I don’t want someone who’s been waiting for a chance to participate, to miss out on what this would mean just because I wound up on the wrong side of the fence.

In the end, I just have to process my disappointment and remember that it is not about me. It’s about you, or your kid with T1D, or your spouse with T1D. The important thing is for development and testing to be successful. It’s not important that I am personally a part of it.

So it turns out my big news is actually nothing. I am talking with the team about another study which, honestly, seems kinda cool. If that comes to pass, I’ll let you know.

In the meantime, let me take this opportunity to remind you that clinical trials are important, and your participation could be a crucial piece of the puzzle toward making life better for People With Diabetes.

To find out about clinical trials taking place around the country, go to clinicaltrials.gov and put “diabetes” in the search box. A recent search found over 10,000 clinical trials. The site remains open during the USA’s government shutdown.

A great resource for finding out about clinical trials and participating in research is Type 1 Diabetes TrialNet. Funded by a number of organizations including JDRF and ADA, TrialNet is set up to explore ways to prevent, delay, and reverse the progression of Type 1 Diabetes.

Today I’m disappointed for me. However, I’ll be thrilled beyond measure if your participation results in something truly great for all of us. Make a commitment today to be a part of something that changes our lives forever.
 
 
 

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Happy Friday – Thanks for the donations.

October 4, 2013 – 9:35 am

It’s Friday! Yaaaaaay! Better yet, it’s the eve of a week’s vacation. Because of work, I tend to go without during the summer months, so that means a bunch of days off in the fall. Maureen is on vacation too, and she’ll be heading to Florida to be with family. I’ll be staying home. But before vacation begins, I thought I would pass these tidbits along from my local JDRF chapter. Wherever we are, together or apart, we’ll be able to support the great diabetes efforts of JDRF by participating in the following:
 
 
– Get your flu shot! Now! From September 1st through October 31st, Walgreens will donate $1 to JDRF per flu shot given when a customer presents the JDRF barcode/voucher or identifies themself as a JDRF supporter at any Walgreens (or Duane Reade location in the NYC area). – Find out more and get the barcode/voucher, go to:
http://jdrf.org/wp-content/uploads/2013/08/JDRF_Flu_Flyer_Walgreens.pdf

– Now through October 5th (that’s Saturday), Advance Auto Parts is doing the make a donation/hang a paper sneaker on the wall thing in their stores. Make a $1, $5, $25, or $50 donation and they’ll dedicate a paper sneaker in your name. More importantly, your donation will help to fund research toward advanced drugs, therapies, and a cure.

– Also through Saturday, Marshalls is doing the same thing. Go buy a new outfit and make a donation. Or just make a donation. That would be okay with me.

– Finally, if you’re a Wawa shopper (convenience stores on the USA’s east coast—really good coffee), you have until October 20th to donate to JDRF by adding $1, $3, or $5 to your purchase at the checkout, or by adding your loose change to coin canisters at the store.
 
 
If you can, please donate to one or more of these fundraisers. And tell everyone you know about them! Who says diabetes people always have to be the ones donating money for JDRF? Have a super weekend, watch out for the weather, and keep showing that diabetes who’s boss.
 
 
 

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Minimed® 530G with Enlite®. Five questions.

October 2, 2013 – 9:50 am

So the Medtronic 530G and Enlite sensor are here, featuring a new pump and a new CGM (continuous glucose monitor) that talk to each other, with a never-before-available-to-the-public Low Glucose Suspend (LGS) feature. Essentially, when your CGM hits a pre-determined threshold, the new Med-T pump will suspend itself for two hours (or less, if you’ve recovered from a hypo event before the two hours are up).

This is a super development. It’s great that advances in glucose monitoring and insulin delivery and interaction between the two are making their way to the market.

Being the inquisitive sort, after I got excited about the news, I started asking myself questions. Five came to mind in about ten minutes. I don’t have answers to these questions. Maybe no one does. But since it’s my blog, I thought I would ask them here.

A couple of my questions came after reading a fine piece on the 530G at Diabetes Mine. They interviewed company officials and provided some information that I’ll be referencing here. If you’d like, feel free to read their story, then come back here.
http://www.diabetesmine.com/2013/09/new-medtronic-device-gets-fdas-nod-but-dont-call-it-the-veo.html
 
 
Now, the questions:

1. Who gets priority when the orders start coming in?
Will it be new Medtronic customers? Replacements? Upgrades? Influence-peddlers (bloggers, diabetes organization muckety-mucks, etc.)? In all honesty, this is kind of a non-starter for me, because a)There’s really no way for me to find out, and b)The supply will probably outstrip the demand for the product within the first year anyway. By then, we’ll forget how bad some folks wanted it right now back in October 2013.

2. In replacement/upgrade scenarios, what happens to used pumps?
I could (and should) have asked this long ago, but what happens to the old pumps? If the 530G is the greatest system out there, I certainly would like to upgrade. But if someone can’t do that, either because of cost or other factors, I would feel great knowing my Revel™ pump is still going strong, working its magic for another patient. Is that even possible? If not, will the pump’s material be recycled somehow? How does this work today?

3. New users of the 530G will work with a trainer, like they do when starting on other Minimed pumps. What kind of education will 530G users get?
I ask this question because while I was trained, I was not educated about insulin pumps and pump therapy in general before starting on my pump. I was good at getting my A1c down, but there was still a lot I didn’t know. Thanks to my fantastic endocrinologist, I was able to get up to speed pretty quickly. Still, I did not know what insulin on board meant until I read about it online. So theoretically, I could have had the 530G, stacked my boluses up to the ceiling one evening, had the threshold suspend feature kick in on my pump, and still had plenty more insulin acting in my system for a while. Without knowing what was happening to me or why.

I don’t want a new user of the 530G to find out about IOB the hard way like I did.

4. The Diabetes Mine piece mentions that the 530G will not communicate with Medtronic’s MySentry remote monitoring system because the FDA didn’t clear it to communicate wirelessly. Isn’t the CGM communicating wirelessly already? And why do they need FDA approval for something like that?
I remember being at the JDRF Research Summit in Bethesda, Maryland back in March. People working on artificial pancreas technology at the University of Virginia’s Center for Diabetes Technology presented, and among the things they revealed was a remote monitoring feature. Parents in attendance were super-interested in this, and they asked the presenters about whether something like that might be available soon. I remember the UVA presenters said that they didn’t anticipate rolling out the remote monitoring ahead of any device they might be working on. But they also said that they didn’t believe something like that needed FDA approval, because it wasn’t doing anything medical. It was just reflecting what was already going on with the AP system, and the remote monitoring itself wasn’t being used to make any medical decisions for patients.

And like I said above, the Enlite CGM will be communicating wirelessly with the pump already. Shouldn’t be too hard to get it to talk to the MySentry too.

5. Finally: What’s all this artificial pancreas posturing about?
You knew I would ask this, right? This is a little touchy for me. Rhonda at FifteenWaitFifteen wrote about being uncomfortable about this too. Medtronic, and by extension now, many in the media, are using the term “Artificial Pancreas” when referring to this system. The LGS feature in this system is very AP-like. But after seeing numerous talks about artificial pancreas technology, from more than one source in the past year and a half, I can tell you that the 530G is not an artificial pancreas device in the way I think of one.

Last time I checked, no one copyrighted the term “artificial pancreas”, so Med-T is within their rights to tout it as an AP device if they want to. But I worry about two things: First, will using the term with this device, which doesn’t have all of the features of artificial pancreas technology, cause non-D friends, family, and co-workers to think this is the holy grail, and now we shouldn’t have any trouble with our diabetes from here on out? Second, will using the term “artificial pancreas” like this eventually dilute the term for all of us, to the point where just a CGM that talks to a pump will be considered an AP device? We’re just now making big strides in technology that will benefit many with diabetes. When an outfit uses the term “artificial pancreas”, I don’t want it to be less than I’ve been led to believe it will be. Just my two cents. Feel free to disagree.

Full disclosure: Okay, half disclosure. I have a particular interest in this topic, especially right now, and I recognize that this may skew my viewpoint. More about that next week.
 
 
So those are my five (plus) questions on the Minimed 530G with Enlite. As with almost everything, time will probably provide the answers. Do you have any questions of your own? Have any answers for mine?
 
 
 

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It’s No-D-Day again! Time for a recipe.

October 1, 2013 – 7:36 am

nodday

The idea for No D Day comes from George Simmons of Ninjabetic fame. It’s his way to get us to focus on the parts of our lives that aren’t wrapped up in glucose checks, boluses and basals, and carb counting, if only for one day. Today, many of us will try to post something that doesn’t really relate to diabetes. And that’s the last time I’m going to mention that word today. Interested in writing your own Non-D piece? Once it’s complete, be sure to add your link HERE so everyone will see it.

Okay, on to the recipe…
DSC01125

I love to cook. But I can’t take credit for this recipe. It’s an invention of my wife’s, and it doesn’t really have any measurements. So I can’t make it too easy for you. But it really is pretty simple.

First, start with some fresh cherry tomatoes. The fresher the better. The ones you see here came from my garden. If you’re getting the ones you see under plastic in the grocery store, you’ll probably have to work with them a bit to get the same consistency at the end.

You’ll want to roast the tomatoes. Preheat your oven to 350 degrees. Place the tomatoes on a cookie sheet and cover them with olive oil, a little salt and pepper, and oregano. If you’re working with the grocery store tomatoes, take a sharp knife and put a little hole in each tomato so they’ll roast and release their juices little easier. After looking at the photo again, I think Maureen also sprinkled a little mozzarella cheese in there when I wasn’t looking.

Put them in the oven and let them roast for 15-20 minutes. Then take them out, toss them around with a spatula to make sure everything is mixed together well, and if you think they’re done, they’re done. If not, put them in for five more minutes and check again. Once the tomatoes are done, put them in a bowl (or something you can get them out of with a spoon) and chop some fresh basil on top. But be sure to get all of the goodness from the olive oil, the tomato juice, and everything else from the bottom of the cookie sheet into your container. At this point, it’s hard to keep your mitts off of everything. Your house will smell sooooo good.

For the presentation, we also toasted a rustic bread (bread, I know, right?– must remember: No D Day). With the oven still at 350 degrees, we coated the bread with olive oil and a light coating of celery salt and garlic powder. Then we put them in to toast. If you don’t want the bread, just find something that will work for you. Even rice cakes would be okay here. If you have to live with celiac (still no D-word… crafty, eh?), I’m thinking the Udi’s bread would be great with this.

Once complete, we served it up with some goat cheese. So imagine a layer of goat cheese underneath the tart, almost sweet taste of roasted cherry tomatoes. In our house, this was a recipe that will go down in history.
 
 
 

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September DSMA Blog Carnival: Are you listening, Doc?

September 30, 2013 – 9:17 am

September’s DSMA Blog Carnival topic goes back to the August 7th #DSMA Twitter chat, where we discussed online interactions between patients, healthcare professionals, and others. So ask yourself:

Assuming online interactions with HCPs become a “mainstream” thing, what would you like those conversations to be about?

I remember this chat. There was a lot of talk about what we share, how much we share, and how comfortable (or uncomfortable) we all were with sharing information online.

So first, let me restate something I mentioned that night: If you’re posting something in an online forum, you need to be comfortable with the fact that anyone (and everyone) can view it and respond. If we get comfy with that idea, it makes it easier when online interactions do (or will) occur. Oh, and remember: Those interactions may happen online, or they may happen the next time you see the person you’re interacting with offline.

That has certainly happened in my case. I have had interactions with my endocrinologist based on things written on my blog. In fact, we discuss (briefly) my blog during every appointment. Again, I brought up the blog during an appointment about six months after I started it. I had to be comfortable with the fact that she could say anything she wanted about it before I could let her know. Freedom to say whatever you want goes both ways, you know?

Anyway, this isn’t about the conversations I do have. It’s about the kind of conversations I would like to have online with my healthcare professionals. Okay… So let’s say those conversations happen online.

I would really like it if those online conversations wouldn’t be entirely online (there I go again). I still believe there is great value in face-to-face, in person meetings with my doctors. But I definitely see great possibilities in online conversations too, and I would like them to be like the conversations about my blog that I have with my endocrinologist: I want them to be an extension of the doctor-patient relationship. Not the entire relationship, but rather an addition to what we already have.

I think it would also be helpful if a doctor and patient could share important information during a critical phase in care. For instance, when a patient starts on an insulin pump the first time, how great would it be if the patient could get online feedback from their doctor to help them with questions and adjustments? How helpful would it be for a doctor to get online feedback from the patient on their CGM data after the doctor updates a patient’s basal rates or changes their insulin?

And what about support? I’m talking about support that a healthcare professional can give that lets a patient know that they recognize the effort that’s being made to manage diabetes on a daily basis. Support from a doctor could be worth its weight in gold to a patient who’s struggling, and all it costs is the time spent on an e-mail or a blog comment. I think a lot of patients would find that kind of interaction priceless.

Honestly, with examples like that, I don’t see why more online interactions aren’t taking place already. Overly optimistic? Maybe. I’m just talking about the kind of interactions I’d like everyone to have with their HCPs.

Remember: If you’re going to post something online, make sure you’re comfortable with getting feedback about it. But if you are ready for the online conversation to be two-way, here’s hoping your discussion is helpful and supportive.

This post is my September 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/september-dsma-blog-carnival-3/
 
 
 

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