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.

August DSMA Blog Carnival. The emotional impact of diabetes.

August 28, 2013 – 9:39 am

August’s DSMA Blog Carnival topic touches on the link between diabetes and our emotional well-being when it asks the question:

What can a parent of a child with diabetes, or a person with diabetes, do to help reduce the emotional impact of caring for diabetes?

I’m going to start off by saying it’s okay to vent a little. When we’re doing everything we can to handle life and diabetes at the same time, and the hemoglobin A1c comes back higher than we’d hoped? At those times, it’s hard not to feel defeated. So it’s okay to let off a little steam and complain about how hard it is to maintain a healthy diet, exercise routine, BG checks, infusion set changes, and effective basal rates, along with work, school, kids, family, paying the bills, etc.

Once we’re through complaining, however, the cold hard facts are that we’ll have to get up tomorrow and diabetes will still be with us. We’ll have to do that fingerstick and that bolus before we start in on breakfast. And knowing that, in those moments, is where it really gets hard sometimes.

Enter the Diabetes Online Community. At any time of day, in every corner of the world, it seems, there are people who understand exactly what you’re experiencing. Because they’ve been through it themselves. When you reach out in those moments, these individuals are there to console you and support you. They make you stronger by reminding you that you are not alone, and you can keep going. Empowering, without judgment. Just perform a Twitter search for the hashtag #DOC. When I checked recently, I found a dozen or so recent conversations of support, tips, and other examples of people in the community giving a leg up to those who need it, when they need it most.

Certainly, we can try to lighten up on ourselves. Caring for our diabetes or our child’s diabetes is difficult, taxing work. It requires both physical and mental strength and stamina. How many times per day do we perform math calculations? How often do we check glucose? Have we treated overnight lows and lows at work? You bet we have. And we do this every day, usually with the only promise that we’ll have to do the same thing again tomorrow. So while it’s important to stay on top of things as much as possible, we can’t always kick ourselves for missing the occasional bolus or miscounting the carbs on the dinner plate. None of us is perfect—we will make the occasional mistake. We cannot let it define who we are. Overcoming those difficult diabetes moments is what makes us champions.

Last, but not least, when all else fails, we know that there are professionals who can help us deal with the emotional pitfalls that come with years of caring for a chronic disease. More people than you can imagine have already reached out for that extra measure of consultation and feedback to get their emotions on track again. It’s nice to know that when we need it, there is an extra layer of care to be found.

There are a number of things that try to get in the way of us living a fantastic life, while living with or caring for diabetes. Hopefully, those setbacks are minor. Emotions (sometimes, raw emotions) are part of our entire package. But they don’t have to drag us down. By venting a little, commiserating with our online pals, letting ourselves off the hook now and then, and reaching out for professional help when we need it, using the tools available to us helps us to reduce the emotional impact of caring for, or living with, diabetes in our lives.

This post is my August entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetescaf.org/2013/08/august-dsma-blog-carnival-3/
 
 
 

Posted in DSMA Blog Carnival | Tagged , | Comments (0)

Diabetes Art Day, #StripSafely edition.

August 26, 2013 – 9:38 am

Today is an extra-special-important version of Diabetes Art Day! Thanks to Lee Ann Thill, today is a day for all of us to put our creative minds to use to help spread the word about the importance of meter and test strip accuracy.

The Strip Safely initiative has really taken off, and today’s D-Art Day is another chance for us to shout about the fact that meter and test strip accuracy is not nearly what it should be.

To find out more, visit the Strip Safely site at www.stripsafely.com.

You are encouraged to create your own art using test strips… upload your work of art HERE. You can also go there to view other special pieces of D-Art.

Without further ado, here’s my art, if you can call it that. I’m among the most art-challenged people on the planet, so I did a little photo thing that turned into kind of a public service announcement. Oh well. Here it is… And don’t forget to check out the other great works of art on Diabetes Art Day– Strip Safely edition.

SS-DArt
 
 
 

Posted in Diabetes Art Day | Tagged , , , | Comments (0)

Here’s to you, Grandpa.

August 23, 2013 – 9:15 am

On this #BlueFriday, I’m thinking of my grandfather. I don’t know why. Every once in a while, I think of him when I think of growing older.

My paternal grandfather was the only other person I know of in my family with diabetes before I came along. He was dead for almost five years by the time I was diagnosed. No one ever said whether he had Type 1 or Type 2 diabetes. Maybe at the time he was diagnosed, they didn’t make that distinction. I don’t know. I do know that he took insulin to help keep his glucose in check. After my diagnosis, I remember my grandmother, all of four feet something, pulling an old box out of the back of her apartment that contained things like old, old syringes and antiquated urine strips. She wanted me to have them so they didn’t go to waste. I didn’t have the heart to tell her that they were way beyond their prime.

Mostly, I remember my grandfather during the 1970s. I don’t ever remember seeing him in the act of treating his diabetes. No insulin injections, no treating lows, no glucose checks (though in those days, I wouldn’t have wanted to see that). Diabetes was never discussed, and I don’t remember anything that he ate. I don’t remember hearing him discuss trips to the doctor, where, just like today, he would have had to go just to get his insulin prescription refilled. Mostly, he was quiet when I would see him, usually watching TV. He went to work every weekday until he retired, and drove a Ford Fairlane sedan—manual transmission no less, three on the column, if you know what that means. He never drove an automatic in his life. Always had a crew cut. He lived a pretty typical blue collar life, at a time when you could work in a factory your entire career, buy a house, and help send three kids to catholic school and then to college.

Maybe diabetes just wasn’t a big deal to him. Maybe he didn’t want to make it a big deal. Today, I wonder if he was so sedentary at home because he was afraid of doing too much and going low. But that requires an awful lot of speculation on my part, and the real truth could be the exact opposite of that.

Later in life, in the 1980s, he would spend time in hospitals off and on, until he eventually lost his life late in 1986. I remember hearing stories about how some of those hospital visits involved grandpa fighting with nurses and orderlies who were trying to care for him, and how he always demanded to be released and allowed to go home. He was gradually losing his memory by that point, although in retrospect I don’t know how much of that was grandpa losing his mind and how much might have been hypoglycemia (or even hyperglycemia). Diabetes was hard to treat even in the early eighties, even in a hospital. I feel bad for him when I think of those times when maybe he just needed more food or more insulin, couldn’t get it, and lashed out because nobody caring for him could identify the signs.

Mostly, when I think of my grandfather, I’m glad that I’m living with diabetes here in the 21st century. I have so many more tools available to me to help me survive. Even though there are horror stories of doctors and hospitals screwing up care for people with diabetes, my personal experiences have been quite positive. And with advances in technology, I don’t even need a syringe to deliver my insulin, though I do have to prick my finger to check my BG instead of peeing on a strip. I like to hope that I’m living a better life than he lived, and I’m quite sure that he would have wanted it this way.

So here’s to you, grandpa… Gone, but not forgotten. I hope wherever you are, you’re living a better life too.
 
 
 

Posted in Uncategorized | Comments (5)

Wordless Wednesday– More Summer Goodness.

August 21, 2013 – 9:49 am

DSC01046

These fellas are known as Mr. Stripey tomatoes. Mr. Stripeys are an heirloom tomato, which is why they’re not perfectly round and they have a couple of blemishes on them. In addition to those factors, Mr. Stripeys are meaty, earthy representations of what real tomatoes taste like.

DSC01052

And if I’m lucky, I’ll get enough this year to freeze a few and use them in a pasta sauce. These babies are worth waiting until August for.
 
 
 

Posted in Additional Inspiration | Tagged , | Comments (2)

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

August 20, 2013 – 12:01 pm

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.
 
 
 

Posted in Diabetes | Tagged , , , | Comments (0)