Monthly Archives: August 2013

This movement is gaining momentum. Climb aboard the steamroller NOW.

If you’re a Person With Diabetes, you know the importance of seeing accurate readings on your glucose meter. In a public meeting last May, officials from the U.S. Food and Drug Administration admitted that there are some glucose meters and test strips out in the marketplace that no longer meet the standards that they were approved for in the first place.

What were they approved for in the first place? In testing with the FDA, test strips are required to meet an accuracy of +/- 20%. That means if my meter says 180 mg/dL, it could actually be as high as 216 and still pass the test. Or it could be as low as 144… and still pass the test. That’s a 72 point difference! That’s a window big enough to drive a truck through. And that’s what is required to pass the test and win approval.

To their credit, the FDA is working to lower the threshold and make test strips even more accurate. So what’s the problem?

Well, once the test strips are approved for use in the USA, they aren’t subject to further scrutiny. In other words, there is no program in place to ensure the continued accuracy of test strips once they’re approved. So the test strips I’m using, that met a 20% standard of accuracy when approved, might now have an accuracy of +/- 40%, according to some experts. At that measure of accuracy, my 180 mg/dL reading might actually be 252. Or 108. A difference of 144 mg/dL.

Since dosing insulin is dependent on my blood glucose reading and how many grams of carbohydrates I’m eating, if there are 45 grams of carbs in my meal:

– That 20 percent standard means a dose as low as 3.3 units. Or a dose as high as 5.1 units.

– That 40 percent deviation could mean a dose of 3.0 units. Or a dose of as much as 6.0 units of insulin.

Imagine if my dinner bolus is 6.0 units, but it should have been 3.0 units. Since my target is to get back to 100 mg/dL, and one unit of insulin should drop me about 40 mg/dL, an over-bolus of 3 units means I could drop 120 points lower than expected, resulting in severe hypoglycemia or even death. Are you with me so far? Do you understand how critical test strip accuracy really is? Good.

This is why the Strip Safely (http://www.stripsafely.com) campaign is in full force, helping to spread the word about the importance of test strip accuracy. You can do your part too, by sending a letter, either by snail mail or by e-mail, to your elected officials in Washington. Need a little help getting started?

– A sample letter you can use is available here.

– You can find your elected officials HERE.

Hint: Our elected officials have Twitter and Facebook accounts too. So does the FDA. In fact, they have many Twitter handles, including @US_FDA, @FDADeviceInfo, and @FDAMedWatch. If you decide to send something via Twitter, be sure to include the hashtag #StripSafely.

You might be saying, “Hey Steevo, you wrote about this before… why bring it up again?”. Because it’s that important. Let’s keep the momentum going. Let’s help improve the safety of people living with diabetes, and improve the peace of mind of our loved ones affected by diabetes. It’s that important. And your help is needed and appreciated and keeps the momentum going.
 
 
 

Enjoy the new bike.

Just wanted to take a moment to echo Kerri Sparling at Six Until Me and send a quick Monday note of Congratulations to Scott Johnson, winner of the 2013 InsulinDependence Athletic Achievement Award.

With the award comes enough cash for Scott to be able to get a new bicycle (hopefully something made in this century) and keep riding. And playing basketball. And keep inspiring.

Congratulations Scott. Well deserved. You are indeed an athlete of the first degree. We all feel like winners thanks to you.
 
 
 

To share or not to share.

I’ve seen, heard, and read discussions lately regarding how much, if any, personal information we all like to give out online. The questions are many and varied: Do I share personal information? Personal information about family members? What about photographs? Do I want my medical team reading my blog? Or even commenting? What about company representatives from pharmaceutical and medical technology firms?

To share or not to share… That is the question. The answer is really up to you. It’s an individual decision. The right thing to do is what’s right for you. For this post, I’m going to give a little detail about sharing online, and what I share or won’t share online. Let’s take the questions above one or two at a time.
 
 
Do I share personal information? Personal information about family members?

I do share some personal information. I’m 51 years old, I live in Baltimore, I have a wife and a niece who live in the same house with me. When I have stubborn high blood glucose levels, or nasty low BGs, you can read about that too. I’ve shared details of bike rides, recipes, and my participation in a clinical trial.

But I haven’t told you everything about me, and I probably never will. There are limits to what I have chosen to talk about. Those limits have changed over time, as I’ve gotten more comfortable with what I’m letting you know, and less afraid that you know it. It seems sensible to me to be as secretive as possible at the beginning of your online story. You can always give more detail later. But once you let the cat out of the bag, so to speak, you can’t put it back in. For a long time, Maureen was just referred to as The Great Spousal Unit and Rachel was just The Live-In Niece. When I finally used their names in blog posts, I did so because I was comfortable with it… Not because I felt I needed to do so to tell a story. Also, and this is important: When I’ve talked about anyone from my personal life, I have either received permission to use their names and details of our interactions (or they were public figures already), or I have not referred to them at all. That includes my niece and my spouse.
 
 
What about photographs?

If you haven’t already, do this right now: Turn off the geotagging on your photo device. Now.

Geotagging is a way that digital photos can store, in laymen’s terms, GPS-type (metadata) information on where the photograph was taken. If the geotagging feature on your digital photo device is on, and you take a photo of your child at the pool rocking their OmniPod, and you upload it to Twitter, Facebook, Instagram, etc., people with the skills to find the geotagging can find exactly where that photo was taken. Most digital photo devices, including iPhones and iPads (sorry, I don’t know about Android or Samsung) come with the geotagging feature on as a default setting.

I love to take photos, and I love to post them online. But the geotagging is off on my pocket camera. I can’t imagine a single reason (unless I’m lost in the wilderness with cell service—and I don’t have a smart phone), why I would want to tell everyone, including potential thieves, stalkers, etc. where I am and what I’m doing. Okay, I probably won’t ever have to worry about stalkers. But you get my point, right? I don’t want to scare you. The photos are great. But don’t share the latitude and longitude of your location in the process. Want to know more? A simple Google search on “geotagging” will provide explanations, examples of geotagging used for sinister purposes, and tips on how to disable the geotagging on your device.
 
 
Do I want my medical team reading my blog? Or even commenting?

When I read my first Diabetes blog (for the record, it was textingmypancreas.com), I was overwhelmed that someone else existed who had the same experiences I had. Then almost immediately, I got jazzed up about starting my own D-blog.

Then reality set in. I’ve written before. Mostly for broadcast (news, and a lot of radio commercials), and the occasional internal company e-mail or web page. Almost always, people have wanted to edit what I write, sometimes even to the point of insisting on grammatical or spelling errors in the process (“change ‘their’ to ‘there’, and capitalize the T” is my favorite example). These people were paying me, so they had the right to ask for changes that suited them, though I draw the line at mistakes like the one above. At any rate, I really started to get uncomfortable with the idea of putting something out there again and having it whacked by readers, or worse, my employers (whom I generally do not write for). As a result, I waited for many months while I mulled over whether to go online with my story. Of course, I finally did decide to start a D-blog, and I did so by getting comfortable with a couple of notions.

One: This is my space. If you don’t like what I write, you have the right to read something else, or start your own blog. I’m not above making mistakes, and I hope that when I do, I am contrite and not bitter about reversing my viewpoint or my wording. But I’m not going to add an apostrophe to every word that ends with an S (mistake intended, in case you’re wondering).

Two: If I’m posting something on the internet, I need to understand, and be comfortable with, the fact that anyone can read it. And comment on it. Yes, my endocrinologist reads my blog. She doesn’t follow it, she’s never left a comment, and we don’t discuss it at length. But it is often an additional part of our conversation during my appointment. An example:

Dr. P: “I read about your gluten free week. How did you like that?”
Me: “It was great… really gave me an insight into the difficulties Celiacs must face when they’re diagnosed.”
Dr. P: “Are you still eating gluten free?”
Me: “Ummm…. No. But maybe I should? Would I have to adjust my basal rates?”

I did have an instance where I described a not-too-good experience related to my diabetes, and I received an e-mail about it (not from Dr. P). That e-mail made me very uncomfortable. But that feeling soon faded, as soon as I realized that the e-mail was sent out of concern for my welfare, and not meant to scold me. What I’m saying is that the discussion goes both ways. If my story is public, I need to allow for and even encourage feedback. And support anyone’s right to say anything they want about it, as long as it’s not hurting anyone.
 
 
What about company representatives from pharmaceutical and medical technology firms?

See above for my feelings on that. If we post it publicly, anyone can read or comment. But let’s face it: They’re probably out there reading our posts. Not all posts, of course. But many firms equip themselves with software that will find mention of their name or products when it’s used online. That includes Twitter. So if you’re posting a review of a new meter or CGM or insulin, and you use the company or product name, they may take a look.

I’ve never received comments directly from company representatives. But I’ve received an e-mail from an author after a book review, and a PR rep from a pharmaceutical firm after posting about their product and research. These e-mails were sent almost certainly because when I wrote about these things, I reached out to the entities themselves to let them know I was posting about their product. I wasn’t going to change what I wrote to make them happy, but I thought a heads-up on a post featuring them would be the decent thing to do.
 
 
Over the last year and a half, I’ve shared a lot about my life and what I’m up to at a given time. I’ve done it here, certainly, but I’ve also shared a lot via Twitter and Facebook. I’ve done so at an increasing, yet careful level of detail about who I am, who I interact with, and how I interact. I can’t really give advice on what you should do regarding privacy… I’m not qualified. But if I did give advice (you knew I was going there, right?), I would say: Be safe, think things through as much as possible, and try to be fair. Ask questions, get advice if you’re not sure. Try to take a long-term view of things. Will my post still be worthwhile ten years from now? And don’t be afraid. The rules of online interaction are being written while we speak. And they will be rewritten again. Don’t be afraid of the rules, but be aware of them. Your story is worth telling, no matter how you tell it.
 
 
 

Keeping the diabetes monster in check.

Hello everyone! I know I haven’t really talked about my diabetes much in the past couple of weeks. That’s because I haven’t really had any crazy highs or scary lows to talk about. Or anything else diabetes-wacky-that’s-me-specific.

During last week’s DSMA Live/Twitter Chat event, someone (I wish I could remember who) made a great point by saying that we all tend to post when bad things happen. As a result, sometimes it may look like we’re not doing well, when in fact we are. I would like to change that perception with this post.

In other words, the diabetes is playing nice for a change. Everything seems to be going well in Stephen’s D-world.

The infusion sites for my insulin pump have been really good and insulin-absorbent. When they’re in, they’re in, and they’ve been lasting for five and six days at a time.

While I’m at it, with cooler than normal weather during July and August, I haven’t had to contend so much with keeping the insulin from spoiling in the heat.

Despite the fact that I’ve traveled a bit in the past week, I never notched a number above 257 mg/dL on my meter, and that was way above what my BG was usually running. That was when I was on the road from Ohio to Maryland at the end of the trip. I have a bad habit of grazing on crap during these rides, and even though I did some of that, I was able to come down from the 257 with minimal effort and without crashing later.

Lows have been minimal lately, and not too low. Handled with a simple 15-20 grams of carbohydrates and a little patience. My basal rates, updated at my last visit with my endocrinologist, seem to be doing the trick.

This isn’t totally diabetes related, but my new glasses (both pair) have been helping me see better than I have in years. Not that my eyesight was really poor, but I love that I can read the fine print on things without getting a headache.

I haven’t had test strips lately that didn’t want to work because they didn’t have enough blood on them, even though you know you put enough blood on them, and you’re tired of lancing the end of your finger and dripping and smearing blood everywhere just so your meter can give you an error because it thinks you’re not bleeding enough for it today. None of that is occurring right now.

I do have to order a new belt clip for my pump. But hey… when things are going so well that this is the only thing I have to complain about, I can’t really complain. Don’t you just love it when things work the way they’re supposed to? Take that, diabetes!

I hope I didn’t jinx the whole thing by writing about it, but I don’t believe in superstitions anyway. Just in case, I think I’ll bookmark this post so I can refer back to it during those times that things aren’t quite going as well as they have been of late. How are things with you right now? Here’s wishing your diabetes is as gentle as a summer breeze.
 
 
 

About that #DSMA Philadelphia meetup.

DSMA Philly

Since I’m back from vacation, and I finally have wi-fi access for the first time in almost a week, I should probably talk about the DSMA Live and DSMA Twitter chat that happened last Wednesday night in Philadelphia. I have never been in a room with even half as many adults with diabetes as I was that night. It was a pretty incredible experience.

At some point, I guess I’ll probably get used to being in rooms with other adults with diabetes. I haven’t gotten to that point yet. It’s weird because I’m almost never in a room with other PWDs. When I am, it’s wonderful because it’s empowering and uplifting and informative all at the same time. So it’s weird and wonderful.

That kind of environment is a by-product of what Cherise Shockley and Scott Johnson bring to the table with their efforts to bring people together and share how important it is to engage in discussions with others like ourselves. It’s the kind of quality that’s not easily defined, but is special and necessary at events like this. Sort of a “you know it when you see it” kind of thing.

I got a chance to meet a few people I hadn’t met before, and a few that I had met before. It was very nice seeing Molly McElwee Malloy, research coordinator at University of Virginia’s Center for Diabetes Technology. She’s also a Certified Diabetes Educator and an RN. She’s a Type 1 too, so it’s interesting to talk to someone who knows so much and lives with diabetes like I do. She made some great points during the podcast. I loved hearing Allison Nimlos talk about the Paleo diet, and I got a couple of great ideas for starter books. I’m not thinking of going totally Paleo, but I’d like to try it out, at least, because it really does appeal to me. And most diets don’t. Kelly Kunik was very kind and gracious, and we talked briefly about her talented niece, who is doing great. I didn’t get a chance to tell her that my nephew has done fantastic since living with us for a couple of years, and our niece is growing every day since moving in with us two years ago. I got to meet Colleen Gray, who is very nice and seems to have a great sense of humor. There was also Maria Qadri and Penny too, both of whom are great to follow on Twitter because they’re very witty and smart. And I got to meet Brea, a Best of the ‘Betes Blogs winner from last month who has a great story to tell, and tells it greatly.

You know, I didn’t think I had met too many people Wednesday until I read what I just wrote. But it appears that I did. It’s always great to put a face with a name, or vice versa. Mostly, it was great hearing the diversity of voices in the room.

How was it being in the room while DSMA Live and the Twitter chat were occurring at the same time? Honestly, it was a little hard to concentrate on one without losing track of the other. But after a while, I was able to handle it, I think. And honestly, I wouldn’t have missed it for the world. I vote for Cherise and Scott to do this every week in front of hundreds or thousands. How cool would that be?

I’m so grateful to Diabetes Community Advocacy Foundation and Roche for hosting this special happening close enough that I could attend. This also brought home to me the idea that I really need to find a way to do a live meetup of my own locally. Don’t know if I can pull it off yet, but this event definitely put it at the forefront of my mind again. And I have to admit: Even though it will be just a virtual meetup, I’m looking forward to this Wednesday too.
 
 
P.S. If you missed the original podcast, you can listen to it now by going to blogtalkradio.com and searching for DSMA Live, or by clicking here:
http://www.blogtalkradio.com/diabetessocmed/2013/08/08/dsma-live-in-philly

 
 
 

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