Category Archives: Diabetes

8 keys to my diabetes success.

How is your diabetes?

That’s a loaded question, but it’s one that I get asked all the time. Like my diabetes is a pet or a sibling or something.

The last time I was asked “How is your diabetes?”, I started to reflect on the incredible number of ways that people have helped me over the years. And I got a picture clearer than ever before that this really is a team game, and I have so many to thank for any success I’ve achieved.

So, without further ado, here are 8 things that have been keys to my diabetes success:

1. My endocrinologist. She did a terrific job of getting me ready to begin life on an insulin pump eight years ago. I can’t believe it’s actually been eight years. Along the way, she’s helped me make little changes that have added up to big benefits, at least in terms of A1c numbers and avoiding dangerous highs and lows.

2. Diabetes technology. While we’re at it, where would I be without my pump and my continuous glucose monitor (CGM)? After hating it at first, I’ve come to rely on my CGM as the truth teller of what my glucose is doing throughout my day. It’s also alerted me to dangerous lows before they became a problem. That’s the first time I’ve written that, because I like the idea of handling things myself. But I have to give credit where credit is due… my Dexcom has been worth the cost so far.

3. #DSMA. The fastest hour of the week happens every Wednesday night at 9:00 eastern time here in the USA. Whether I’m a participant or moderator, I still get a kick out of the inside jokes, the GIFs, and other shenanigans that take place in addition to the diabetes-themed questions and answers during the weekly get-together.

4. Writers. Let’s add diabetes podcasters in there, because I like podcasts too. Part subject matter experts, part editorial pundits, part inspirational advocates, the people who take to the internet to write and podcast the latest and greatest (or worst) about this disease are changing lives, and saving them too.

5. Friends. I don’t think I can begin to count all the times my diabetes friends have helped me with something I wanted to know, wanted to figure out how to do, or needed to avert disaster. I did the first arm insertion of my CGM at a conference after being shown how to do it by someone else. I’ve been lucky enough to sit at a table (like the proverbial fly on the wall) and watch movers and shakers discuss policy and outcomes. I had not one, not two, but three people save my ass when I was in London without an inserter for my pump infusion set. I am so grateful for this and so much more that my friends have provided over the years.

6. Product and Software Developers. Ever-slimmer CGM sensors and hybrid closed loop insulin pumps. Open source software that actually closes the loop for people who have the right equipment and a little know how. Data platforms where our information can securely reside, for ourselves and our health care team to see. I’m not seeing this kind of effort or these kind of results positively affecting any other patient community.

7. Clinical Trial Participants. I haven’t talked about them much around here for a while. But clinical trial participants make a lot of the new technology and drugs we see even better by bravely stepping forward and agreeing to see necessary research through to its necessary conclusion. They provide more than just a body or a number for researchers… they provide valuable insight into what works and what doesn’t, and any product or software developer worth their salt should pay heed when that insight is shared.

8. Insurance Companies and Prescription Providers. Just kidding… did you really think I would include those two in a “Best of” list? I’ll tell you what… let’s make this last one the Diabetes Online Community. The DOC saved me once before, and I can give you a few pointed examples of lives young and old that were positively impacted by this vibrant and wonderful group of souls from around the world.
 
 
For better or worse, those are my 8 keys to diabetes successes. What are yours?

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This is my diabetes.


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.

This is my diabetes.


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.

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.

The Last Five Years.

There’s a play, from a few years back, with words and music by Jason Robert Brown, called The Last Five Years. This post isn’t anything like that, but when I was listening to music from this show a few days ago, I did, indeed, reflect on the last five years in diabetes.

Have you thought about how much has changed in diabetes in the past five years?

You need to go no farther than your Facebook, Instagram, or Twitter feed to find examples of the latest drug, device, app, or DIY AP (Acronyms!) that someone is using. And that’s just fantastic, whether you use any or all of these things.

The Lions Club meeting I attended and spoke at last week had to do with food, and its role in helping People With Diabetes get and stay healthy. One of the things I told this group is that our food choices are important. But I also think of using a toolbox approach to managing life with this condition.

Knowing what specific groups of food do to your blood sugar, and making informed choices based on what you know, is just one tool in the box. Now, let’s take a look at some of the other tools added to our toolbox in just the last five years:
 
 
What about the new classes of drugs available today? They may be expensive, but there’s no question that medications like Victoza, Farxiga, and Afrezza have been beneficial to managing blood sugar, and helpful in just giving us more options to choose from.

I’ve been one of the loud lamenters of the fact that PWDs are down to just three insulin pump choices in the USA now. But what is available seems to be an improvement over previous versions of insulin pumps. Just ask anyone using the t:slim x2, the latest Omnipod, or the Medtronic 670g.

While insulin pump choice is shrinking in my country, continuous glucose monitor options are expanding. Abbot’s Freestyle Libre has been approved by the Food and Drug Administration, and we’re all anxious to find out if it works as well as we’ve heard it does. Which brings me to…

DIY artificial pancreas adopters! This is what the hashtag #WeAreNotWaiting is all about. There are Facebook groups, in-person user group meetings, and people flashing their rigs on Instagram and Twitter. Did you see this coming five years ago? Where will it be five years from now?

There are tons of diabetes apps out there. And more are coming online every day. Some do bolus calculations, some display your CGM reading on your phone (thanks Dexcom), and some allow you to download all of your devices in one place, then allow your medical professionals access to the uploaded data. I’m sure someone was thinking about this five years ago, but it wasn’t me.
 
 
Our lives with diabetes, much like diabetes itself, is ever-changing. It’s interesting to look back on the Last Five Years and see the myriad of changes that have occurred. It’s exciting to think about what The Next Five Years will bring.

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