So, you want to be an advocate.

So, you say you want to be a bigger advocate… you want to be more involved. This is a little lengthy, but if you can, stay with me here.

You care, right? You care as much as the next guy. You’d like to get an opportunity to be at important events where the nuts and bolts of diabetes issues are discussed. You’d like to be in the room, and you want to be included in the discussion.

Great. No, really, I mean great… we need more advocates. We need more people in the room, and more people breaking down doors to the rooms we can’t get into yet. I’ve heard this a lot over the past six-plus years, and I’m always encouraged by the willingness of others to step forward and add their voice to the conversation.

Look, I haven’t been in the room a lot either, but I’ve been there enough to know that if you’re going to put yourself out there all the time, there are some things you need to be prepared for. Here are just a few:
 
 
A big change in priorities. You think diabetes messes with your schedule? Let’s add in conference calls with other advocates that are important for planning events and strategies. There are webinars, where information is presented that speaks to exactly what you’re interested in. You’re going to get a lot of e-mail that needs attention.

If you have a day job, look out, because most of these things are scheduled in the middle of the day in the middle of the week. If you do it long enough, you’ll find creative ways to work with your bosses so you can be part of these events but still get your work done. Usually in the evenings and on weekends.

Tonight, I’ll be reviewing diabetes statistics for my state again, so when our Advisory Council’s Diabetes committee meets next week, I’ll have a more thorough understanding of the landscape here in Maryland. You can’t just show up for these things… you have to be prepared.

Travel. You’re probably thinking… I love to travel! So do I. Now, let me give you an idea of what my last two advocacy trips looked like:

Get on a plane from home in the middle of the day. Easy enough. Get to my destination, check into the hotel. There are already things happening, even if the conference or summit or whatever hasn’t started yet. I hope you’re not tired from traveling, because there’s networking to do.

Then there’s the event itself. If someone (a company, an organization) is paying for travel and/or accommodations, they’re likely going to schedule something nearly every minute of the time you’re there. When I was in Las Vegas in March, I spent nearly four full days in conference space. Last month, I traveled to Chicago for the first time in thirty years, and I spent a grand total of about 25 minutes outside of the hotel I was staying in. That’s fairly typical.

And once the events were over, I was gone. In Vegas, the conference ended on Friday, and I was on a plane home at 6:00 on Saturday morning. In Chicago, the event ended at 12:30, I immediately boarded a bus to the airport, and after a full pat down at the security checkpoint, had to run so I could barely get to the gate in time to board my plane. I arrived home at 7:00 on Sunday evening, and I was back at work at 8:00 the next morning. Again, a fairly typical conference experience.

And you know what? I do love it! I wouldn’t have traded either of those experiences for anything. But that doesn’t keep me from feeling like I’ve been run over by a truck as I drag my ass into work on Monday morning.

And I haven’t even talked about the time I haven’t spent with my wife or family because I was away. Or the things left undone at home because I wasn’t there to do them.

Are you ready for that? Several times a year? I’ve taken nine days off from my job so far this year, and they’ve all been for various advocacy-related events. That’s not even counting the days I worked early or late so I could leave early another day to attend late afternoon meetings that lasted long enough to get me home around 8:00 that night.

Responsibility to the community. I don’t know how others feel about this, but from my point of view, if I’m going to be somewhere noteworthy, I feel a responsibility to the diabetes community. A responsibility to not only share what was discussed and the various parts of the gatherings I attend, but to share my feelings about what I was just a part of. Even if those feelings aren’t exactly wonderful. People who were not able to be a part of the discussion should know what was discussed, and have a chance to respond if they want to.

I also feel a responsibility to, where I can, try and help others attend these events. Not everyone needs to be at every conference. Not enough deserving people get to go. When people express a desire to go to a conference, a symposium, or a public workshop, I want to help them get there. So I let people know about applications to conferences, or about FDA workshops open to the public. There are truly more advocacy opportunities out there than you might think. To me, advocating means advocating for more than just myself.

Criticism. If you’re going to be somewhere where diabetes is discussed, and you’re there enough, you’re going to be criticized. Either because your stance isn’t what your critic’s stance is on an issue, or because they think you’re a shill for the company who sponsored your trip, or because they’re just bitter about diabetes for one reason or another. Feelings are real, and whether they’re right or wrong, they’re still feelings.

I’ve been lucky… I haven’t been raked over the coals in a public way like some friends have been after being at an event. But at some point, if your advocacy is big enough, you’re going to have to deal with someone who doesn’t see things your way. And you will have two choices: ignore it, or deal with it. Neither are pleasant.

Cost. Whether it’s a conference, a workshop, or even an ADA Tour de Cure ride, there have been many times where I’ve covered my own travel expenses for a weekend or longer. When I went to Las Vegas in March for #HIMSS18, I received a stipend from the Society for Participatory Medicine that covered my airfare and parking at the airport. Four days in the hotel and every single meal out there came out of my own pocket. When I go to Friends for Life Falls Church in October, I’ll be paying for gas and two days in a hotel out of my own pocket.

At least a couple of times every year, if I want to attend something I’m interested in, I have to pay my own way to be there. And that podcast I do? The equipment I use to record it costs money, as does the platform where it’s hosted online. Those Champion Athlete With Diabetes medals? I don’t get those for free.

Sometimes, you have to pay to play in the advocacy game. Again, I wouldn’t trade those costs for anything. But I realize that I’ve been exceptionally lucky to be able to afford them so far.
 
 
Look, I realize I may have scared a few of you off with what I just shared, but I hope I haven’t. Because we need all the advocates we can get. And my experience doesn’t necessarily have to be your experience. Your level of advocacy, how much time you commit, and how much money (if any) you spend are all within your control.

But those are just five things you have to be prepared for if you want to take your advocacy to the next level. With every meeting, every webinar, every conference, I really hope I’m adding something positive to our community. I can tell you that so far, the effort, the cost, and the results have all been worth it for me.

If they’re worth it for you too, then by all means, step up and let your voice be heard. Where I can, I will help you.

People often say that advocacy isn’t easy. I’m not sure this is exactly what they mean when they say it. But I know that I’m grateful for the advocates who are out there every day, not complaining.

Because I know some of what it means and what it costs to be out there advocating for better lives for all of us living with diabetes. So, to finish up, let me say…

To diabetes advocates everywhere: Thank you.

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Finally… Spring.

I’ve waited a long time to write that headline.

Winter lasted an exceptionally long time here on the east coast of the United States, and at times (March and April), it seemed like it would never end. And as it happens every three months or so, I’ve begun to take another look at my diabetes and make a few subtle changes.

To begin with, I started to clean up and rearrange all of my diabetes supplies. Winters are really hard for me. Most years, I just try to get through the winter without attending to anything other than the things that absolutely need to be done. I realize that winter officially ended nearly two months ago… but this weekend, I cleaned up my supply cabinets.

When the weather finally breaks, I take on other tasks related to my diabetes too. Yes, I changed my lancet. 🙂
I also looked at my CGM graphs over the past weeks, and then checked my basal rates to see if they needed to be adjusted in any way. My guess is that I’m fine for now, but I’ll be sure to discuss it with my endocrinologist when I see her in a couple of weeks.
 
 
Spring and summer are also the seasons of fresh produce, and there’s no question I eat better from May through September than I do from October through April. Especially when the fresh produce comes from my own garden.

I actually made a salad with some of that red leaf lettuce this past weekend. And it was delicious.

Do you ever feel like the coming of warm weather and additional sunshine gives you extra energy that you didn’t have a month earlier? That’s exactly how I’m feeling today. Here’s hoping your Spring, or, depending where you live, your Autumn, brings a renewed energy and the motivation to continue to live the happiest life you’ve ever known.

Let’s award even more Champion Athletes With Diabetes.

What does your medal look like?

Does it look like this?

Hey, we all need a goal. Why not a medal that recognizes your hard work and determination in the face of a never-ending chronic condition?

I have such a medal, and I would love to send it to you or a loved one living with diabetes. If it means that 5k run is completed, if tournaments or meets are finished, if someone checks in to their fitness class on a regular basis, it’s worthy of this medal and my congratulations.

Want to get a medal just like this one? The steps are simple:

Send an e-mail to champswithdiabetes@gmail.com. Let me know what you or your special athlete is taking part in, or took part in. Tell me about the resilience it takes to live with diabetes and pursue athletic goals. Give me your address. And I’ll send you a medal!

To date, over 80 Champion Athlete With Diabetes medals have been awarded to people on five continents. Trust me, it’s a cool medal. Our ranks have been growing every year, and I’d like to add you or your loved one to the roster.

Send me your e-mail today, and let me say congratulations for a medal well earned!

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?

Finding Integrity.

I’m a big fan of the word integrity.

Dictionary.com defines integrity in three ways:
 
 
1. adherence to moral and ethical principles; soundness of moral character; honesty.

2. the state of being whole, entire, or undiminished:
to preserve the integrity of the empire.

3. a sound, unimpaired, or perfect condition:
the integrity of a ship’s hull.

 
 
Integrity is one of those words that is easy to define, but harder to live.

Most people think about integrity in the context of that first definition. That’s also the most difficult thing to pull off every day, because it’s the one part of the definition that depends entirely on you.

I think of this in terms of diabetes advocacy. Am I doing what I do for the good of my community, or am I doing it so I can sit back and say, “look what I did”? There’s also the honesty factor: am I being truthful, completely truthful, or am I just being truthful enough to serve my own purposes? I think about this a lot.

When I say I think about this a lot, I mean I think about it in a self-examination kind of way, the way that we all should be looking at ourselves from time to time to ensure we’re being people we’d be comfortable calling a friend.

That said, I think almost all diabetes advocates do their best for the betterment of the community. There are always exceptions to the rule… but generally, there’s just not enough money in it otherwise. And recognition is fleeting. At the end of the day, you still have to look yourself in the mirror and like what you see.

The second part of the definition relies partly on the individual, but also relies on the ambiguity of whatever mission is being delegated to the individual. See also John Dean in the Nixon White House, or Paul Newman to his Newman’s Own brand of products. Big differences.

In addition to its literal translation, the third part of the definition can come into play, I think, when we think of ourselves in the context of a structure, or as the definition says, a ship’s hull. Are our thoughts and actions doing enough to keep our character, and the community’s character, intact?

When we say we need more volunteers, are we also volunteering ourselves? When we’re given a gift, of any measure, are we giving a gift as well? Are we being inclusive in the diabetes friends we choose? Are we answering the inquiries we want, and ignoring the rest?

This much I do know: the better we practice integrity every day, the better our friends and associates will be, the better our communities will be, and the better we will be.

First, let’s be as healthy as we can be. Next, let’s take what we’ve learned about integrity and define it on our own terms. Then we can be happy with the reflection in the mirror we see every day.

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