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.

Looks can be deceiving.

I had a wierd high and a strange low in the past four days. Neither fit the stereotypical low or high.
 
 
Thursday night at about 3:00 a.m., I found myself with a very dry throat and an overwhelming urge to use the bathroom. When I came back, I did a quick BG test to find a 53 mg/dL staring me in the face. Not a common occurrence.
 
 
Sunday, the tables were turned. I had completed a hard hour-plus workout at the gym. I spent extra time to recover and drink lots of water to rehydrate my muscles. Apparently, it wasn’t enough, because when I got back into my truck, a quick test revealed 260 mg/dL as the result. Probably too low of a temp basal during the workout, and I was still dehydrated.
 
 
Moral of the story: Things are not always what they may seem. And test, test, test.
 
 
 

Like these Friday Links.

Happy Friday everyone… Hope your weekend is shaping up to be a good one, even if the weather still doesn’t look much like mid-March. Let’s hope that changes soon. I’ve got a bike ride to train for!

Today’s samples from the Diabetes Online Community are on a number of topics. If you haven’t seen them already, I hope you’ll take a look. You might learn something new, or come away with a different perspective.

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First, some recaps of diabetes events:

From Christopher Snider at A Consequence of Hypoglycemia, a recap of the TCOYD conference in Sacramento last weekend:
http://tobesugarfree.com/2014/03/10/a-few-thoughts-about-tcoyd/
 
 
From Jen at See Jen Dance, a recap of the same:
http://seejendance.com/2014/03/09/how-much-is-too-much-data/

Both are great perspectives.

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From Karen Graffeo at Bitter-Sweet, a recap of JDRF Government Day in Washington, and a heartfelt plea for more D-Advocates. We can never have enough.
http://www.bittersweetdiabetes.com/2014/03/jdrfgovday-highs-and-lows.html

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After reading this, you’ll never look at flying with an insulin pump the same way again. Seriously. Here’s a great post from Melissa Lee at A Sweet Life that describes why sometimes we may have high BGs on airline flights, and why we may also experience “baggage claim lows” once we’ve touched down:
http://asweetlife.org/feature/what-you-should-know-about-flying-with-an-insulin-pump/

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Bea at Cranky Pancreas is a fantastic Type 2 advocate who I really enjoy reading. She recently talked about her start of the Type 2 medication Victoza, side effects, and what it’s doing for her BGs:
http://crankypancreas.com/?p=5244

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When you meet someone new with diabetes, the conversation doesn’t happen the same way every time. Check out these interesting encounters:

From Alecia at SurfaceFine

From Sara at Moments of Wonderful

From Scott at Rolling in the D

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Finally, ‘cause it’s Friday, you need to read this post (if you haven’t already) from Kelly K. at Diabetesaliciousness, who goes all third person when she describes reconnecting with her first diabetes friend 30-some years after diagnosis. This will give you that warm, mushy feeling you may be seeking on a gray day:
http://diabetesaliciousness.blogspot.com/2014/03/joe-my-very-first-friend-with-diabetes.html

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Okay… work needs me. And I need to work. Hope today is the start of a fabulous weekend. Enjoy!
 
 
 

Prescription burnout.

I’m fortunate. I have access to and participate in medical, dental, and vision insurance through my employer (The Great Spousal Unit is also covered under my plans). It’s not cheap to have this coverage but, for the most part, I’m able to manage the costs. Despite needing to schedule appointments and, you know, actually go to doctor appointments, I’m able to do what I have to do to navigate my way through the healthcare system here in America.

Except when it comes to prescriptions.

Dealing with prescriptions is hard. The reasons for that vary, but they’re mostly related to the number of items I have to keep track of, the fact that they all seem to need to be renewed at different times, and the stupid way my prescription provider operates.

For the record, I get insulin, plus backup insulin, glucagon, a few daily pills I need to take, and test strips through my prescription provider.

Almost all of these, except the glucagon kit and the backup insulin, which I don’t need to renew all the time, are on different rotating 90-day schedules. Meaning, I have to go to my provider’s website and renew my prescription, or my doctor can electronically submit prescriptions to the provider. Though that turned out to be a major hassle with the provider, which I’ll explain farther down the page.

I generally don’t suffer from diabetes burnout, but I do suffer occasionally from prescription burnout. It’s not that I have to renew my prescriptions every 90 days. It’s that I may need to renew one prescription this week, and another in three weeks, and another ten days after that, and another the following week. Keeping track of which script needs to be renewed when takes some doing.

I try to keep track of it on my Outlook calendar at work. That works okay, except when I’m not at work, and as long as the Exchange server doesn’t go down and wipe out everything I carefully scheduled (which happens occasionally).

Then there’s the cost. My provider introduced a huge change in their formulary list this year, which is costing me an additional 1200 dollars during 2014. I don’t even want to go into that.

So there’s the volume of everything that needs to be renewed, and the quirky scheduling of everything, and then there’s this:

When renewing my prescription online, the provider has my credit card information so they can process my order at the time it’s placed. So they have my credit card information on file.

The last time I visited my endocrinologist, she was kind enough to get me new prescriptions for things I had run out of refills for. The best part was (or so I thought), she was able to send the script directly to the provider so they could fill it. Great, right? Ummm, no.

A couple of weeks (or so) goes by, and no prescriptions. Part of the order included my insulin, so I’m starting to worry a bit. I give the provider a call. It turns out they haven’t filled my prescription because they “didn’t get payment yet”.

Me: You have my credit card information on file… what’s the problem?

Prescription provider phone rep: We can’t fill the order without your authorization of payment.

Me: You do it when I renew prescriptions all the time… how is this different?

Prescription provider phone rep: We can’t fill the order without your authorization of payment.

Me: This is a highly inefficient way of doing business. My doctor sends the prescription directly to you, then I have to wait to find out it’s not coming, then I have to call you, then you tell me I have to provide payment when you already have my credit card info on file.

Prescription provider phone rep: We can’t fill the order without your authorization of payment.

Okay, I realize there’s a difference between “providing payment” and “authorization of payment”, but still… why do I have to find this out on my own? Why was I led to believe my prescriptions would be shipped when they weren’t? Why was I not told that they were waiting for my okay before filling my order?

I don’t want to say the provider did this on purpose. I don’t think their purpose was to deny or delay my prescriptions. After all, if they don’t fill a prescription for me, they don’t make money. And that’s where the problem lies.

It’s just my opinion, but it seems to me that prescription providers, more than any other entities providing goods, services, or prescriptions through an insurance plan, are not about the patient at all. Not in any way, shape, or fashion. No… they are purely profit centers, and they operate as such. I don’t think my provider wanted to deny my coverage. I just think they skimped on customer service and expediting orders in an effort to make a few extra bucks. They hired someone to think this all out, but they didn’t pay top dollar, so what they got was a system that doesn’t really work at all.

And they don’t seem to care about it, because, let’s face it… once I’m on their plan, they have me for the entire year. At that point, they don’t have to be nice, or helpful. They just have to squeeze as much money from me as they can. If they have a stupid, inefficient way of doing that, who cares? They know I’ll be back when my next prescription needs to be filled.

I suppose it hasn’t occurred to providers yet that better customer service could help expedite orders, rather than having them sitting in a queue somewhere. More orders, more money, more profit. And I suppose it hasn’t occurred to them yet that a superior level of customer service could have a positive effect on patients, and the plans they’re covered under, which might make their plans more appealing to additional clients in the first place. More orders, more money, more profit. That requires too much forethought, I guess. I wonder if they even know what that word means.

Oh yeah, it’s prescription burnout I’m feeling. Or prescription provider anger. Either way, it’s not healthy. And my provider is perfectly okay with that. As long as I keep coming back for more.
 
 
 

Level Foods Review and GIVEAWAY!!!

DSC01421

UPDATE: Our giveaway winner (according to random.org) is latanya!

Latanya, you have 24 hours to send me your mailing address (e-mail me using the E-Mail Stephen link on the left of this page). Once I get it, I’ll send out your Level Life Box ‘O Goodness. If you don’t get back to me by 12:00 noon EDT on Sunday, I’ll go to the next person on our list. Thanks!
 
 
Life is full of firsts. At least I like to think so. I think there are firsts that happen for us all through our lives. Today is one of those for me. It’s our first giveaway!

I’m going to try to do this justice today, but I know you’re just dying to get to the bottom of this post and find out how you can win some Level Life goodies for yourself. If that’s the case, skip to the end and then come back up here and check out my review of Level Foods’ snack bars and protein shakes.

I’m not always the best person to ask to review things, because for me, it goes like this: If I like a product/book/website, I’ll talk about it. If I don’t, you (usually) won’t hear anything from me. Why? Because it’s hard to put yourself out there, whether you’re posting a video online, writing a book, or developing products that are both tasty and helpful for People With Diabetes. So if I have criticism at all, I generally keep it to myself, or keep it just between myself and the person it’s directed at. On the other hand, if I like something, I want the whole world to know.

Ethan Lewis is a Type 1 and founder of Level Foods. In the past few years, his efforts are coming on strong in development and release of several products that are high in protein and low in carbs, designed to help you keep your BGs level as much as possible (get it? Keep the BGs Level? Level Life? Ahem… moving on…).

Ethan was kind enough to send some samples my way recently, and I had a chance to try out snack bars and shakes carrying the Level Foods brand. For me, they have been exactly as advertised. I tried the Caramel Chocolatey Peanut bar and the Chocolatey Crisp bar, (carb counts: 17g and 18g each, respectively), and both the Vanilla and Chocolate shakes (all Level Life shakes are 10g each). The main takeaway for me was the absolute remarkable feeling of being full after enjoying each of these items. In fact, I had to start drinking only half a shake at a time because I would feel too full if I drank the whole thing at once.

They’ve been good pre- and post-workout snacks for me… making me feel full, but giving me enough fuel to feed my muscles, whatever muscles I have left. My favorite? The Caramel Chocolatey Peanut bar. That seemed to be the big hit overall at our household. They went pretty fast.

So now I have to go get more. The good news is I can get more online at levelfoods.com, and I can go to Target if I don’t want to wait for delivery (it’s okay… I pay cash for nearly everything anyway). Ethan even has a $4.00 USD off at Target coupon offer on the website.

Now, let’s get down to the giveaway. I have what you see in the photo above: A four-pack of both the Strawberry Crème and Rich Caramel shakes, plus a box each of Chocolate Peanut Crunch and Double Chocolatey Chip snack bars. Also included are Strawberry Banana and Mandarin Orange (my favorite) glucose gels (15g of carbs each).

To be eligible to win, just leave a comment below telling me you’d like to win. I’ll accept entries through Friday at midnight Eastern Daylight Time. Then I’ll put everyone’s name in one of those random-generator things and pick a winner, so look for the name in an update on this post Saturday morning. Good Luck!

Disclosure, just in case you didn’t catch it above: I was sent samples of Level Foods products to try. I was not asked to write about them, and I was not paid anything to write about them. I have no working relationship with Level Foods at this time. But I’m happy to give some of my goodies away!
 
 
 

Make your voice heard. Today. Now.

SSGuidance

Maybe you’re one of those people who says, “That FDA—they never listen!”. Or maybe you say, “If the FDA wouldn’t wait so long, we could see products come to market sooner!”. Well, glucose meters and test strips are not made in a day. Okay, maybe they are, but bear with me here.

The U.S. Food and Drug Administration (the FDA) is in the midst of an arduous process to update guidance to companies on future manufacture of blood glucose meters. From the Strip Safely website:

“FDA has two draft guidance documents about blood glucose meters that are open for comment until April 7, 2014. A “draft guidance” is basically a preview of what standards the FDA is considering requiring in order for blood glucose meters to be cleared — the law requires that FDA open its draft guidance documents up for comment before publishing a final version.”

So if you’re one of those people who says, “That FDA—they never listen!”, here’s your chance.

The FDA has two open dockets right now through Monday, April 7th. You have an opportunity to raise your voice with the rest of the Diabetes Community, engaging in public discourse and helping the FDA get it right.

The best part is, it’s so easy to lend your voice to this important issue. As usual, Strip Safely has everything you need to know. And not in a creepy, big-brother, overbearing government kind of way. Head on over there now and you’ll find super easy instructions that will help you lend your voice to this increasingly critical guidance.
(hint: read the instructions carefully, or you might miss something important)

If you’re worried about not having enough time to comment, don’t. Strip Safely has links to the dockets for personal use meters and in-clinic meters. And they even have language you can use to join the chorus of D-people who are weighing in on this topic. After rewriting part of the prepared comments and submitting them to the FDA, I looked at my watch to find that a mere fifteen minutes had gone by from start to finish.

If you’re worried about your privacy, don’t. You can submit your comments anonymously. Or you can give them your name and e-mail address. Your choice.

If you’re worried about not making an impact, don’t. We need to submit as many comments as possible. More comments get more notice, making more of an impact. And after April 7, we may not get the chance to comment on this for another ten years. That’s the way it works at the federal level, folks. Your voice on this topic is appreciated and valued and necessary.

One other thing: After you submit your comments, don’t forget to tell everyone you know that the FDA is accepting public comments on guidance for over-the-counter blood glucose meters, and meters designed for healthcare providers in an office or hospital setting.

It’s not often you can do something tangible that you know will have a positive effect on People With Diabetes for years to come. But you know what? This is your chance to do just that. It’s easy. And we need you.

Many thanks to Christel Marchand Aprigliano and Bennet Dunlap for leading the charge up the Hill of Guidance.