Tag Archives: diabetes

This is my diabetes.

March 23, 2018 – 10:11 am


This is The Great Spousal Unit, walking our dog at Fort McHenry in Baltimore, home of the Star Spangled Banner, probably one of the greatest public picnic spots in the entire country.

We go there at least a couple of times every year. Usually in the morning, when we grab a couple of portable chairs, two large cups of coffee, a little breakfast, the Sunday newspaper, and the pooch. We take the entire morning, leisurely going through the paper, discussing the latest and how it makes us feel, and taking Boomer for a walk or two. We don’t usually return until early afternoon, choosing to take the long way home via city neighborhoods we haven’t been through for a while, to see how they’re doing too.

As I’ve gotten older, and my diabetes has gotten older, these brief moments in time become more and more precious, and essential. Work, internal and external relationships, diabetes and diabetes advocacy all play a part in ramping up the focus on every minute of every day. But those last two things… diabetes and diabetes advocacy…

If you’ve never lived with diabetes… imagine having more time for quiet mornings with those closest to you. Imagine having the time to turn your interests and passion into a hobby rather than a mission.

This is my diabetes.

This is Boomer the Dog, and Max the Cat. As you can see, they get along pretty well.

Neither Boomer nor Max are certified alert pets or therapy pets. The service and friendship they provide fall short of and expand far beyond those definitions. Max does have a knack for knowing when my blood sugar is low, or at least a knack for getting me to focus on treating a low. Boomer provides that rock solid dependability that helps you to know that no matter what, he’s on your side and he’s not going anywhere. When you’re excited about an achievement, or you’re sobbing due to some insult swallowed or dream dashed, he’s always there, tail wagging, ready to pick you up.

If you’ve never lived with diabetes… imagine your dog or cat as just a buddy, not a family member. Then imagine having the gift of a beloved pet who will celebrate triumphs over diabetes and commiserate over losses due to diabetes with you. No questions asked, no conditions. Imagine how incredibly special that can be.

This is my diabetes.

Photo courtesy of Rhonda B


These are some of my friends who live with diabetes.

Having a friend is spectacular. Having friends who understand you is like Christmas. Having friends who understand you, don’t judge you, and want to hang out with you now and then is like having Christmas every day of the year.

These people know you. They know what you go through. Sometimes, they’re rule breakers like you. They can help you navigate problems with devices, or give you insight into a new drug you haven’t tried. They’ll also help take your mind off the fact that you have a chronic condition you won’t ever be able to shake off. They are worth their weight in gold.

If you’ve never lived with diabetes… imagine feeling alone in your disease, feeling like you’re the only one who understands or ever will understand what you’re going through. Imagine the despair that can bring on after a couple of decades. Then imagine suddenly being accepted by new friends, just for having a busted pancreas, just because they too have known the despair. Imagine the gratitude you’ll feel and the renewed sense of purpose it gives you, every time you interact with them.

This is my diabetes.

Hey listen, maybe your life is a lot like this. Maybe you have a dog or a cat too. Maybe they bring joy to your life. Maybe you’re doing okay, and if you are, I am truly happy for you. We all deserve happiness.

I don’t know where my life is going from here. I only know that because of the people, the pets, and the experiences in my life, my outlook isn’t as bleak as it once was, and my diabetes is all the better for it. In fact, things are pretty damn great right now. We all deserve happiness.

This is my diabetes.

By StephenS | Posted in Diabetes | Also tagged , | Comments (2)

This is my diabetes.

March 21, 2018 – 10:11 am


This is my insulin pump. It is my lifeline of sorts, in that it allows a steady rate of insulin to be infused into my body throughout the day. Also, it lets me add extra insulin to cover the carbohydrates I eat, and to correct any high blood sugar numbers that might happen from time to time.

If you’ve never lived with diabetes… imagine this external device as part of your life 24 hours a day, seven days a week, forever. The only time it comes off is when you swim or take a shower. It can also add a level of concern about what might happen in the future, should something break, or should insurance stop covering some or all aspects of this therapy.

It will also be the subject of additional scrutiny from TSA agents when you go through security screening at the airport. As I’ve found out firsthand, that’s including when you go through the TSA Pre-Check line.

This is my diabetes.

Here’s a Dexcom Clarity report. It gives me valuable information on glucose trending for the past seven days. Among other things, it helps me to know if I need to consider changes to the basal rates on my insulin pump.

If you’ve never lived with diabetes… imagine an extra level of concern about what might happen in the future, should the report not be as well as expected. Imagine living with concern over just the anticipation of a report or a simple lab test. Concern about the future is something I try to put in a box, safely stored away until the time when I might have to address it.

Frankly, I don’t know if I could handle it if I started to worry about potential complications all the time.

This is my diabetes.

I have a quarterly appointment with my endocrinologist next month. I have a meeting with my primary physician a month after that. I’ve already been to the ophthalmologist this year. And I have to schedule time with a podiatrist and my dermatologist too.

Meanwhile, there are prescriptions to fill. I have a couple of everyday medications that are refilled every 90 days. Add in the insulin I need, which I need to have refilled every 90 days too. Then there are strips for my glucose meter, sensors for my CGM, infusion sets and reservoirs for my insulin pump.

My out of pocket expense for all of this, the amount that insurance does not cover, has passed $3,500 per year.

If you’ve never lived with diabetes… imagine spending the price of a European or a Caribbean vacation every year just to stay healthy. Think about not finishing college, just so you can afford your medication and supplies.

And that’s not counting the cost of the time it takes for all of those things mentioned above.

This is my diabetes.

If we handle all of this well (and who can do that all the time?), we’re considered obsessive about our disease, making it a bigger part of life than it should be. If we don’t handle it well, we’re considered “non-compliant”, or worse. And that’s without any outside influences like stress at home or in our careers.

In addition to a constantly vacationing pancreas, we go through these internal struggles too, all the time, every day.

This is my diabetes.

By StephenS | Posted in Diabetes | Also tagged , , , | Comments (1)

This is my diabetes.

March 19, 2018 – 10:11 am



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.

By StephenS | Posted in Diabetes | Also tagged , , | Comments (2)

Join the Champion Athletes With Diabetes this Year!

March 14, 2018 – 10:11 am

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 champswithdiabetes@gmail.com. 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.

By StephenS | Posted in Athletes With Diabetes | Also tagged | Comments (1)

HIMSS18: Diabetes, you’re miles ahead.

March 12, 2018 – 10:11 am

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.

By StephenS | Posted in Events | Also tagged , | Comments (5)