This is my diabetes.

This is the most recent infusion set I used to pump insulin into my body. You know, the thing I need to do 24 hours a day, every day, or else I die.

When you inject insulin, either by syringe or by insulin pump, you run the risk of drawing some blood out at the same time. It’s just part of the landscape. You learn to live with the possibility of blood coming out while you’re trying to get insulin into your body.

If you’ve never lived with diabetes… imagine pulling an infusion set from your body and small (and sometimes, large) amounts of blood comes from the site. Imagine having to pull a set early because you can see that blood is on the outer portion of the adhesive used to hold the cannula (the small plastic tube that winds up inside your body, through which insulin is pumped) in place.

Then imagine the idea that this will happen many times if you’re lucky enough to live many years with this condition.

This is my diabetes.

This is the site on my leg where that infusion set was placed. I took this photo within five minutes after pulling the set. My leg will look like this for a couple of days, at least. I need to be careful not to use that site again for as long as I can, because the scarring that has gone on under the skin could keep me from being able to pump insulin through that spot for some time. If I overuse that site, repeated scarring could make it impossible to pump insulin through there permanently.

If you’ve never lived with diabetes… imagine looking at a site like that after three days (or less). Imagine knowing you’ll have another site just like it to look at in three more days (or less). Do the math and imagine how many of these wounds you’d willingly give yourself over the years just to keep from dying.

This is my Dexcom sensor site after two weeks. The sensor sits under the skin and measures glucose in the interstitial fluid between your skin and your blood vessels.

After about a week or so, the adhesive around the sensor starts to pull away from the skin. To continue to hold the sensor in place, I add something called KT tape. It’s the tape you see beach volleyball players wear. It’s flexible and stays in place and is fairly water resistant.

Using the tape allows me to get an extra week or two worth of wear from a sensor. Sensors are expensive, and they’re just one of the many things we’re required to purchase if we want to manage our diabetes as well as possible.

If you’ve never lived with diabetes… imagine getting out the tape every couple of weeks and carefully cutting a hole (hopefully better than the one above) and even more carefully placing the tape over the sensor, placing it so it will hold the sensor and surrounding adhesive in place for a little while longer, so you can afford to purchase something else you really need.

This is my diabetes.

The crazy thing about all of this is that I’m one of the lucky ones living with this disease. I actually have access to an insulin pump and supplies, a continuous glucose monitor, and other tools of diabetes management.

But I’ll never outlive the scars. I’ll never get a chance to rest. There will always be one more thing that needs attention. Every day of my life. It is never ending.

This is my diabetes.


Join the Champion Athletes With Diabetes this Year!

So here we are, already into the second week of March. Maybe the weather is warming up a bit where you are. Maybe the weather is starting to cool off a bit where you are.

Regardless, you may be training to compete in a local 5k… or thinking about doing a walk to help raise money for your favorite diabetes charity… or maybe you’re going all out and preparing for a marathon, or a 100 mile bike ride. Maybe you’re a swimmer competing in end-of-season meets, or you’re a basketball player looking forward to tournament time.

Or maybe you know someone who is doing one or more of the above.

If so, don’t forget that I have a fabulous medal waiting for anyone living with diabetes and achieving their athletic goals.

I’ve had my athletic pursuits through the years: baseball (and later, softball), basketball, water polo and swimming, and in more recent years, running, cycling, and triathlon. I know how hard it is to start and continue a training plan designed to squeeze out every last ounce of effort. I know what it’s like to try and manage your diabetes once it wakes up to that new level of effort.

I also know how good it feels to be rewarded for a goal well earned.

So come on! Let me know what you or your loved one has been doing to stay active while managing diabetes. Send an e-mail to Let me know what you’re taking part in, or took part in. Give me your address. And I’ll send you a medal!

As of this writing, I’ve sent over 80 Champion Athlete With Diabetes medals to people ranging from age 9 to age I don’t know, but older than me. Recipients have come from dozens of states, around twenty countries, on five continents.

I’d like to send the next medal to you. If it’s important to you, it’s important to me too. Contact me today, and as they say in the USA:
Play Like a Champion.

HIMSS18: Diabetes, you’re miles ahead.

Full Disclosure: the Healthcare Information and Management Systems Society allowed me to attend HIMSS18 free of charge. The Society for Participatory Medicine provided a stipend to help defray some of the costs of travel to Las Vegas for HIMSS18. All other costs, and of course my opinions, are entirely my own.

Okay, first things first. This space has been a little quiet over the past two weeks, for two reasons: 1) The power at our home was out for four days, and a day before the power came back on, I left for Las Vegas to attend HIMSS18.

HIMSS stands for Healthcare Information and Management Systems Society, and their annual gathering is the largest health technology conference in the country. How large? There were 45,000 attendees.

The exhibit space covered two floors of a fairly large convention hall. And then a couple more large meeting rooms too. Trust me, this thing was big.

The exhibit spaces included app developers and government health organizations and companies who develop software to help practices manage patient data. There were device manufacturers too, though I didn’t see any business that was specifically talking about their offerings in the diabetes space. In fact, I didn’t see any businesses or organizations talking diabetes in the exhibit areas.

The educational and information-sharing sessions were many, all day long, and covered more subjects than I can even begin to describe. The most attended ones seemed to be anything using the word blockchain. My suspicion is that most of the men in those rooms (and they were almost all men) love the term, but don’t have any idea what blockchain really is… or how it could be used for better health outcomes.

To be honest, I don’t know how it can be used for anything other than evil. Yet.

Going into the conference, I was under the impression that the patient story would be non-existent there, or nearly non-existent. I was wrong.

There were some very well presented sessions and panel discussions involving people living with chronic conditions and telling their stories as only we can do.

I was encouraged by patients and caregivers who have started organizations that are doing their best to advance the cause of compiling and sharing data with medical professionals. Think “I don’t want to have to explain every symptom I have to every doctor at every visit”.

There was a session that included Dr. Joyce Lee as a speaker, and she covered the #WeAreNotWaiting and #OpenAPS movements. There were two other speakers in this presentation who covered other subjects, but when the session was over, all of the questions were for Dr. Lee.

And that brings me to something I learned at this conference. I found out that we, in the diabetes advocacy and technology space, are often miles ahead of those advocating for people living with other conditions.

Where we can afford it, we have access to technology to better help us manage our diabetes. That technology is being delivered to smart devices. There are platforms available for people living with diabetes to upload data from multiple devices and share it with researchers and our healthcare team. When I asked a panel discussion if there were platforms like this to help those living with other conditions track their information, I was met with blank stares.

A few other takeaways from this conference:

– Interoperability was a big theme, and multiple times, a discussion point. I think we’re at the point where everyone understands its importance and what it means for care… we just need industry and healthcare organizations to up the innovation, instead of letting the fire die down after a conference or workshop.

– While there was industry, researchers, hospital organizations, and advocates all in attendance at HIMSS, I didn’t really notice much interaction between the various groups. In a way, that makes sense because you tend to be drawn to the sessions that speak to your area of focus. But I was disappointed when sessions were presented that included patient or caregiver stories, with only 30 or so people in a room that would seat a couple hundred or more.

– There was one thing that I did not experience at this conference, that is a part of just about every other conference I’ve been to. Other than a couple of brief instances, I didn’t really get to interact with anyone at HIMSS. I went to a couple of scheduled meetups that were to take place in common areas, but when I got to their locations, there was no organization, no one introducing themselves, no one saying “over here”… it was just a lot of people coming and going. I think if I attended next year, I might have more of a feel for how to connect with others.

That last takeaway was kind of a downer. Ultimately, I must say that I feel extremely privileged to have been able to attend HIMSS. I did make a few connections, I hope, that will last beyond this conference. I also learned a lot.

I don’t know how this conference has evolved over time, so I don’t know if I can expect there to be much change when the group gets together again next February in Orlando. But since we’re talking technology, and we know that the pace of change in technology is pretty fast, I think next year’s edition of HIMSS should show the organization is going in the right direction, helping to bring patients, caregivers, healthcare professionals, and industry closer than ever before.

You do NOT want to see this message…

This is not something you want to see displayed on your insulin pump:

This is what popped up on my Animas Vibe pump about a week ago. Immediately, a number of thoughts (all bad) came to mind…

– Does this mean the pump has failed?

– Can I fix it and start pumping again?

– Animas is out of business in the USA… If it’s broken beyond repair, what then?

– What about backups? Do I have enough basal insulin, and syringes or pen needles, to get me through until I get another pump?

I’ll be honest, I thought immediately that the pump was toast, and that I was too, because I knew that Animas is no longer selling insulin pumps in my country. I thought that a failed pump meant I needed to find a new insulin pump manufacturer, and probably, a fight with insurance for replacing my pump before the warranty was out.

Like a complete novice, I called the number on the back of my pump. As I expected, the old Animas number rolled over to Medtronic customer service. We went through some initial getting-to-know-you items, like name, contact number, and the serial number from the back of my pump.

Then I was asked to describe my issue. I covered the error message you see above, and after an extended silence, I was told that indeed, my pump was kaput.

But… good news! Medtronic was able to send a new Animas pump my way in about 36 hours. But… bad news! That meant a full day and a half on MDI, or multiple daily injections.

Ordinarily, this wouldn’t concern me. But when I go the MDI route, it involves a certain amount of longer acting insulin, injected to replace my pump’s basal rate. In my pump, it’s fast acting insulin (Novolog) all the time.

In this case, my basal insulin was Lantus. While using Lantus prior to starting on my insulin pump eight years ago, I encountered some of the worst, the scariest lows I’ve ever had in my life.

So I kept a close watch on my Dexcom CGM, and I did have a couple of lows that, while not super scary, occurred at times when I typically wouldn’t encounter a low just using my fast-acting insulin of choice. In this scenario, I was glad to have access to a tool like my CGM, to give me near-real time numbers and trend data. It helped me ensure that I wasn’t flying blind with my blood sugar numbers. I was far less likely to be surprised.

Nevertheless, I was thrilled to come off the Lantus and start pumping again. Same model pump, same color. There are two important things to note here, especially since I haven’t mentioned these two yet:

1. Make sure you have backups in case of pump failure. I started to run really low on pen needles. I needed to reuse a couple of them, and that’s not always a safe practice (and in case I really have to tell you, never reuse someone else’s pen needle or syringe).

2. Make sure you note your pump settings (basal rates, insulin/carb ratio, correction factor, etc.). Hey, my pump was broken. How could I get all of the settings that have been in there for two years? I had them on my iPad at home. I carry the iPad whenever I travel too, for this reason as much as any other. When it was time to set up the new pump, I was all set to go with the information I needed.

The moral of the story here is that shtuff happens. How we deal with it is sometimes scary, but dealing with unexpected things is kind of what we’re good at. After all, our lives depend on it.

One day, two meetings.

Two days, one meeting. No, wait… strike that. ONE day, TWO meetings.

Last Wednesday, I was in two places on the same day, though, fortunately, not at the same time. The first gathering was in Washington, D.C., a few blocks from the White House, at the Ronald Reagan Building and International Trade Center, for this year’s #HCIDC summit. In the afternoon, it was back to Baltimore for my quarterly meeting of Maryland’s Advisory Council on Health and Wellness.

First, the D.C. meeting: Presented by West Health, which is a non-partisan group dedicated to more fair and affordable access to better care for all Americans, the Healthcare Costs Innovation Summit turned out to be less than exciting.

It wasn’t only because I heard viewpoints that didn’t agree with mine, though I certainly did hear some of that. The thing is, we’re always more sensitive to opinions that we think are misguided or out of touch with reality, regardless of our reality.

Among the attendees I sat with in the ampitheater were DPAC’s CEO, Christel Marchand Aprigliano, and DPAC’s Leyla Mansour-Cole, who has been a guest on the Diabetes By The Numbers podcast. It was Christel who first noticed that the day’s speakers and panels didn’t include one single patient. Even though there was actually a patient-centric session in the afternoon.

It was a bit of a surprise to me, because the other #HCIDC event I attended did include patients. I must say though, I’m still surprised that there are people (I came across a couple of them) and organizations who either forget that patients exist, or can’t imagine that patients would be motivated enough to attend such a conference.

Ordinarily, I would like to spend time talking about some of the presentations, but I only saw one that was worth the time and expense of schlepping to DC at six in the morning. So I’ll spare you the details.


In the afternoon, I boarded the train and headed back to Baltimore, so I could attend my Advisory Council meeting at the Maryland Department of Health.

I’m searching for words to cover what these meetings are like, but to be honest, they’re hard to describe without boring you to tears. Since this was only our second meeting, there are still a lot of procedural questions, and everyone is still getting comfortable with one another.

In the main part of our meeting with the full council, some time was spent informing us about the legislative calendar (which begins in January and ends in early April). They talked about how we might be asked to weigh in on bills before the house or senate (or both), and how the timing of delivering a position on a bill might work. More to come on that.

There was also a short presentation on some successes that similar groups have achieved, and I thought that was helpful in getting us from the “what do we do?” phase to the “let’s come up with a goal and a plan” phase.

Once we completed the meeting of the full council, we broke out for our first committee meetings. Yes, I am on the Diabetes Committee, and in fact, I am now one of the co-chairs of that committee. In our session this time, we were assisted by two members of the Department of Health’s staff, who very ably helped us work on some ideas and goals for our seven member group.

It was the kind of undertaking that must have been difficult for them. But it was quite fulfilling to me to know that I was actually working on something that might have a positive impact on the citizens of my state. This is what I signed up for, right?

So in the end, one gathering that could have been better, one gathering that made it worth the day’s extra effort. Don’t tell anyone, but I already realize I can’t be this active forever. At some point, some year, I’m going to have to scale it back.

But that’s not this year. Wish me luck, because there is going to be a lot of work ahead of me, and I don’t have this thing all figured out yet. But I know I’m working with a good group in the state of Maryland, and I know our cause is well worth the effort.

%d bloggers like this: