Category Archives: Diabetes

Traces of Diabetes. What it means to me.

July 31, 2013 – 10:06 am

DSC00969

I guess all of us see something like this from time to time. Especially if you spend too much time looking down at the ground while you’re walking (subject for another post at another time). I saw this test strip as I was walking on the sidewalk in the neighborhood where I work.

Lots of people have talked about their experiences coming face-to-face with diabetes in the wild. Often it’s something innocuous like this; sometimes it’s a real life meeting with another PWD. Reactions seem to range from the funny to the poignant to the ironic. Let me tell you what it means to me when I see something like this.

Often, when I come across evidence that someone else with my condition is around, I’m almost… shocked. I go through about 98 percent of my life never coming into contact with anyone living with or affected by diabetes. Actually, I’m almost never coming into contact with anyone who wants to reveal those things. So I kind of forget that there are others out there. You would think that with all of the blogs, Twitter feeds, etc. I read, and my own participation in social media, it would be enough to help me remember that there are actual real people going through the same things that I do every day.

But still, when I saw that test strip, it was a big surprise. To me, it wasn’t something exciting as much as it was a slap in the face. Guess what? You’re not the only one, stupid. And no, you haven’t really connected with any PWDs in your part of the world yet.

I’ve tried, but all previous attempts just kind of fizzled. The reasons are many and varied, and in some cases, I’m the one to blame. I’d like to think that my biggest obstacle to connecting in real life with others like me is my schedule, which has been busier in the last two years than it was the previous ten. The truth is, it’s both an obstacle and an excuse. I don’t have a lot of extra time, but I have a little. Maybe that little extra time can be used for some grass roots effort somehow. I don’t know.

What I do know is that I’ve changed a lot in the past couple of years. If I want that change to be even more meaningful, I’m going to have to find a way to do something for others living with and affected by diabetes right here in my own community. I’ve just got to figure out how to make that happen.
 
 
 

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Happy #BlueFridays to you.

July 26, 2013 – 9:47 am

Happy Blue Friday!!!

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Okay, I totally stole this idea from Alecia over at SurfaceFine, who posted a photo of her blue boots.

It’s Friday, and for me and for everyone living with diabetes, I’m wearing blue today. Back in 2010, Cherise Shockley of Diabetes Community Advocacy Foundation and DSMA Twitter Chat fame decided to ask everyone to wear blue on Friday to show support for people living with and affected by the big D. The idea caught on, and three years later, it’s still going strong. A giant blue wave, if you will. I was a little late to the party, but now I’m one of a zillion people out there sporting the blue and raising awareness. To find out more, click on the photo above to go to the Blue Fridays page at Diabetes Social Media Advocacy, or visit the Blue Fridays page on Facebook.

The Great Spousal Unit bought me these retro sneakers for Christmas last year. When she asked me what color I liked, you better believe I said blue right away.

Is it wrong to look at something in blue and wonder how you’d look wearing it on a Friday? I think not. #MakesSenseIfYouHaveDiabetes

Enjoy your weekend!
 
 
 

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More on #StripSafely.

July 17, 2013 – 10:19 am

StripSafely

No doubt you’ve already heard of the Strip Safely campaign. But maybe you’re still asking, “Stephen, what’s it all about? What can I do about it?”. Here’s the lowdown:

At a public meeting back in May, the U.S. Food and Drug Administration (the FDA) acknowledged that there are glucose meters and test strips out there that are no longer as accurate as they were when they were approved by the FDA in the first place. That’s a big deal, no?

What if I also told you that even though the FDA acknowledges this issue, they have no program to perform post-market testing or remove inaccurate test strips from the market? Bigger deal, yes?

Our very lives depend on the accuracy of the numbers that appear on our meter’s display. If we see too low a number… we dose too little insulin and wind up with high glucose, high A1c results, and higher risks for complications later. If we see too high a number… we could dose too much insulin and wind up with severe hypoglycemia, or even death. No pressure, FDA.

So Bennett Dunlap and a few others started the Strip Safely initiative, to shine a light on this issue and encourage everyone affected by it to agitate. Call or write your congressional representatives, senators, and even the FDA. Voice your concern. Help lead the charge for better outcomes through more accurate test strips.

Want to do your part? I thought you would. Visit the Strip Safely site at www.stripsafely.com. There you’ll find a number of great templates you can use to send your own letter or e-mail. There are also links to help you find your elected officials in Washington. You can stay up to date on this issue with the latest updates, and even take the Strip Safely quiz to test your knowledge of test strip accuracy. Or take the quiz and then read about what’s happening… your choice.

For the record, here is a sample of the letters I sent by e-mail to U.S. Representative Dutch Ruppersberger, and U.S. Senators Barbara Mikulski and Ben Cardin of Maryland:

Dear _______,

I’m a constituent who has been living with Type 1 Diabetes for the past 22 years. Because my pancreas doesn’t produce insulin on its own, I receive insulin through my insulin pump 24 hours per day.

How much insulin is administered is based on a number of factors. Most notably, my blood glucose. As you may know, people with diabetes check their glucose levels several times per day as a baseline for determining how much insulin to administer as a result of diet, exercise, stress, and a number of other factors.

I’ve recently learned that the Food and Drug Administration, at a public meeting, acknowledged that some glucose meters and test strips are not as accurate today as they were when they were approved for use in the first place. Furthermore, they have no method to deal with removal or review of potentially inaccurate products from the marketplace once they’re found to be inaccurate.

The issue is simple: If the readings on our meters are inaccurately low, we might wind up not taking enough insulin, which could result in dangerously high blood sugars. If our readings are inaccurately high, we might take too much insulin, which could result in hypoglycemia, insulin shock, and even death.

So we know that not all meters meet the +/- 20% standard set by the FDA in real world conditions. Some manufacturers are now delivering products into the market that put us at increased risk. The lack of an ongoing periodic post market audit of real world strip performance helps these manufacturers risk lives.

What I’m asking you and your fellow representatives/senators to do is to look into implementing a post market program of ongoing random sampling of glucose meters and test strips to insure that all brands consistently deliver the accuracy in the real world that they were approved to do.

Without question, meter and test strip accuracy means the world to myself and my loved ones. We want to know that the number on our glucose monitors is correct.
Because our lives depend on it. Won’t you help? Thanks so much for your consideration of this very important topic.
 
 
This is important. I’m going to say it again: Lives are at stake. I encourage you to get involved and help to save lives today.
 
 
 

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Sailboats.

July 11, 2013 – 9:41 am

Sailboats
I was standing in a conference room at work the other day, waiting for a meeting to start. The room looks out over the Inner Harbor here, and off in the distance I could see a sailing class. Lots of little sailboats tacking back and forth, all with different brightly-colored sails being filled out by the harbor breeze.

Watching that scene made me think about this thing called diabetes. There are a lot of us out there faced with the daily, relentless onslaught of this chronic condition. Tens of millions of us just in the USA. According to the International Diabetes Foundation, there are over 300 million people affected by diabetes across the globe.

But we’re not all the same. Like the little boats in the harbor with green sails and blue sails and pink sails, there are people living with Type 1, Type 2, LADA (Latent Autoimmune Diabetes in Adults), and other forms of this disease. The therapies and drugs available to treat our conditions are even more different than the types themselves.

A Type 1 may be on MDI (multiple daily injections), or may be taking advantage of insulin pump therapy. A Type 2 may be taking a pill to help keep their glucose levels down, or they may ramp up their exercise regimen and change their diet significantly after diagnosis. A person with Type 1, 2, or LADA may consider making the decision to wear a continuous glucose monitor (CGM). Or not.

Some, unfortunately, do not have these decisions to make at all. For many in developing countries, a diabetes diagnosis is a death sentence, either due to lack of insulin, the ability to keep it cold or warm enough, or the lack of ability to pay for it at all, not to mention the absolute dearth of access to care and education. It hurts me to think of the fact that by pure luck, I wound up in a situation where I have access to care and drugs and technology that allow me to lead a good life, while others die for lack of basic necessities.

When it comes to research about diabetes and the search for a cure, there are many different courses charted too. Many doctors are furiously searching for the absolute source of the beginning of diabetes in a person’s beta cells, in the hope that they can stop whatever triggers the disease in the first place. Others are making progress in leaps and bounds by developing technology that, while not providing a cure, may change how we live with diabetes by helping us to stay safe and always keep our blood glucose in a stable range (I’m looking at you, Artificial Pancreas).

So just like those sailboats going east and going west, we’re all headed in different directions. We have our busy lives full of jobs and family and social media, etc. Some of us write about diabetes, some walk for a cure, some ride for a cure. Some have enough to do just fighting the demons within themselves… the ones that say “Give up” or “Why do you keep trying?”. The people who overcome that kind of challenge are champions just as much as those who make headlines and raise thousands and help others.

I’ve said it before: Diabetes comes in many flavors. No two of us are exactly alike. Except that we possess two very special qualities.

We are blessed with empathy. Living with D has made us acutely aware of what it’s like to deal with inexplicable highs and lows on a regular basis. What it’s like to deal with medical professionals who write off anything not great as entirely our fault. What it’s like to listen to people who spread misinformation, then think about it as an educational opportunity. I’m constantly amazed that I have not yet encountered anyone in the Diabetes community (online or not) who is mean or ego-driven. I think that comes from a place of empathy first. We know what it’s like… Your highs are our highs… Your lows are our lows… Your successes are our successes.

We’re also blessed with resilience. We all have the unique skill of being able to get up every day, tote our gear, and treat our condition. Every. Single. Day. How many of us think that before our diagnosis, we’d be able to keep this up for years? Diabetes teaches us resilience, and every day that we hang in there and do what we have to do is a victory.

The songwriter Jason Robert Brown wrote a lyric that goes “We have nothing much in common; but we are more or less the same”. In the song, he was talking about his brother. In my life, I’m talking about my brothers and sisters with Diabetes. We have many differences. But we are all the same.
 
 
 

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A Silent Disease? Not Exactly.

July 2, 2013 – 8:45 pm

Over the past couple of decades, I’ve heard people refer to Diabetes as a “silent disease”, or some such nonsense. I’ve also heard the same phrase attributed to high blood pressure, but this is a diabetes blog, so that’s what I’m talking about here.

It’s strange how our minds get warped by numbers, and then by what those numbers mean, real or imagined. Our lives are consumed by it because our lives depend on it.

Our minds are constantly filled with numbers: Blood glucose, insulin on board, grams of carbohydrates, insulin to carb ratios, hemoglobin A1c, and oh yeah, our weight.

We calculate and pre-bolus and super bolus and correct and exercise and try to eat healthy to keep our numbers in a good range. To be “compliant” (don’t get me started). Heck, just to feel good.

When those numbers aren’t so great, we feel that too. We feel sluggish, thirsty, ready to run off to the loo at a moment’s notice. We also feel concern, worry that we’ll develop complications because we had a bad diabetes day today, and a bad day a couple of days ago, and another one last week. Still, we have to ignore it. Close the box. Turn off the noise. Forget about it. Because another day is here to be lived, and if we want to live it well, we have to concentrate on the here and now and try our damndest to avoid the issues that tripped us up yesterday.

If we do that, and we put a few good days together, maybe a week, what do we have? A week’s worth of good numbers. And absolutely no guarantee that last week’s efforts will help us this week. Still, the numbers and what they represent pound inside our heads, invading the silence. Always with us.

Some PWDs have doctors who look at all of the data and pontificate, prescribe, and prognosticate. They want us to maintain tight glycemic control for 90 days, then explain in 15 seconds or less why we were unable to do so since the last appointment. Even if there’s no explanation. Or a really good one that proves that sudden spike last week wasn’t our fault. More to listen to.

There are good numbers sometimes, to be sure, but the feeling I get from a well-earned 98 mg/dL is always counterbalanced by the knowledge that my endocrine system will require at least the same amount of effort to keep that number in the same place tomorrow. There is no Bank of Blood Glucose to draw from when the same efforts fall short and result in an undeserved 198. We don’t have diabetes batteries to charge up so we can use them to power us when we’re diagnosed with complications.

I’ll admit that because I write and post here, I think more than I should about what it looks like if everything isn’t great with my BG or my A1c or my weight. On the surface, that may sound crazy– why worry about what someone else thinks about something so personal to me? But, in a way, I like holding myself accountable to my readers (both of you). If I can’t always be successful, I want to be sure that at least you know I’m trying hard and not making excuses. More to think about. More noise.

In the final analysis, I try to live the best I can with diabetes every day, on a day by day basis. Regardless of how things are today… when tomorrow comes, I do what I can to forget about the past. Yesterday is only a reference point. I will do everything I can today to live well, by whatever definition that is on that day. By doing so, I enjoy what I have without worrying too much about things I can’t change anymore.

And it’s the only way I can drown out the diabetes noise.
 
 
 

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