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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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.

#HealtheVoices18

As you may have seen if you follow me on Facebook or Twitter, I spent last weekend at #HealtheVoices18, the yearly conference featuring amazing, passionate patient advocates living with nearly 40 different chronic conditions.
 
 
Full Disclosure: Janssen picked up the cost of travel and accommodations so I could attend HealtheVoices in Chicago. All opinions, including the ones expressed here, are entirely my own.
 
 
This was the fourth year of HealtheVoices. I was fortunate enough to attend the first edition back in 2015. I feel even more fortunate to have been a part of this year’s gathering.

The thing I really liked about HealtheVoices this year compared to three years ago is how much the patients are now a part of the program over the course of the entire weekend. In 2015, there were a few advocates sharing what they knew, and there were a few non-patients who shared what they thought you wanted to hear, but they always seemed to fall short of that somehow.

There was none of that this time around. From individuals sharing tips and tricks on Twitter engagement to some of the best patient podcasters around helping others get their own podcasts started, the weekend was really useful for me in a way that some other conferences are not.

Advocate attendees also shared their success stories surrounding specific initiatives they started after attending HealtheVoices, some after receiving grant funding from Janssen. More on that below.

There were the typical moments during meals and in the hallways where people also shared what they know, or shared their own experiences, and of course, those moments helped bond the advocates in ways that mere presentations cannot.

This was the first time I had experienced the HealtheVoices open mic night, where people who weren’t part of the original conference schedule could riff for a few minutes on whatever inspired them. I was not fantastic, so I won’t share my part… but I can tell you that Chelcie Rice killed it with his Sugar Free Comedy, and I’ll never look at the dessert selections on a buffet line the same way again. Also, in case you’re wondering, Rick Phillips is still pretty bitter about Walt Disney, and he had people rolling in the aisles as he described why Disney still owes him a vacation.

As you might imagine, the most moving moments came from people sharing their stories. I’m an empathy sponge anyway, and pretty much all of Saturday my heart was in my throat.

People shared about battling through depression and then dealing with workplace rejection as a result.

People shared about fighting their way through cancer and, as if that weren’t enough, getting an additional diagnosis on top of that.

I was reminded once again that those living with HIV and AIDS are among the strongest, fiercest, and kindest advocates anywhere.

People talked about laying in a hospital bed and wondering if they would ever be able to speak again or walk again or have anything normal in their lives again.

One of the advocates present shared that they had never been in a place where so many people had lived through so many moments where they nearly died, and how it proves that even though we may appear weak to others, our survival and perseverance shows that we’re far stronger than perhaps even we believe ourselves to be.

I’m not sure I can explain it any better than that.

Okay, back to the grant funding I mentioned earlier… Janssen, through the Community Foundation of New Jersey (where Janssen is headquartered), is providing 30,000 dollars in grant funding from the HealtheVoices Impact Fund to patient advocates who want to work on new initiatives that serve the people in their own health communities. To find out more and to apply for grant funding this year, go to
healthevoices.com/impact-fund
 
 
A few other tidbits:

– I wish I had spent more time with advocates outside of the diabetes space. I mean, I did do that, but not nearly enough. I feel like there’s a world of knowledge and camaraderie that has been left unexplored, and I get a sinking feeling in my stomach every time I think about it.

– That said, my time with others from the diabetes community was great. Time with friends I already knew like Bea Sparks, Chelcie Rice, Jenn Christensen, Corinna Cornejo, Mike Durbin, Karen Graffeo, Sue Rericha, and Molly Schreiber (who was part of this year’s HealtheVoices Advisory Panel). And time finally spent with people I’ve wanted to meet for some time, like Phylissa Deroze, also part of the Advisory Panel, and Rick Phillips. And Anna Norton, whom I almost forgot! Anna is one of the 2018 HealtheVoices Impact Fund advisors. The diabetes community is strong and left its footprint on this event.

– On a whim, I did some quick interviews during the conference with people like Bea, Chelcie, Jenn, Mike, Sue, and Lisa Deck, who is a stroke survivor and has an amazing story to tell. If I get a chance to be at HealtheVoices again, I’d love to do a lot more of this. You can find those interviews HERE, HERE, HERE, HERE, and HERE.

Care to find out more about the goings on at #HealtheVoices18? There’s a link that will take you inside every part of the conference, and you will find that HERE.

What did we all have in common? A lot. Body parts that don’t work like they should. Being treated as less than by some, many, or all parts of our global community. Having to work hard every day to turn lemons into lemonade. Or just better tasting lemons.

But the group at HealtheVoices also reinforced the fact that we’re all indomitable. We’re far stronger than the sum of what’s ailing us. We’re creative, we’re innovative. Empathy and resilience are our hallmarks. There is so much that each of us learns from each other.

And we’re teaching the world that our voices are worthy. And mighty.

Windy City, here I come.

I’m off to Chicago, Illinois for HealtheVoices18.

HealtheVoices is a gathering of patient advocates. Not just advocates living with diabetes, but advocates living with all kinds of conditions, from cancer to IBD to MS to everything in between.

I attended the first HealtheVoices three years ago, and for various reasons, haven’t been back. This time, I’m going back to a conference that seems much bigger than it was in 2015.

That gathering back in 2015 gave me the inspiration for starting my podcast, and I’m hoping I make the same kind of connections and get the same kind of inspiration that I did then.

Here’s where I tell you that Janssen is paying the cost of travel and hotel for this weekend, and as always, opinions are entirely my own and can never be bought. See previous conference posts to see more about that.

And I promise to share my opinions on HealtheVoices 2018, hopefully some time next week. Until then, have a super weekend, follow the hashtag #HealtheVoices18, and feel free to reach out if you have any questions.

Here’s to the Heroes.

At the Diabetes UnConference, there’s a term we use for the people who share our lives with diabetes, but who don’t actually live with diabetes themselves. We call them People who Love Us, or PLUs.

Where would we be without them?

Diabetes, at its best moments, requires us to perform a number of tasks and stay on top of a number of factors throughout the day, every single day. It can seem overwhelming at times. How wonderful it is to know that someone has the patience to allow us to handle things despite the moments where things don’t turn out so well.

Diabetes forces us to confront realities that others never have to deal with. Hypoglycemia, diabetic ketoacidosis, and words associated with complications and co-morbidities are constantly in the back of our minds. It means more than I can tell you to have someone to talk to about it.

There are parents and spouses and siblings who help fundraise for cures and research toward better technology and treatment for everyone living with diabetes. They give of their time and treasure to support us. It’s hard to find a way to define love in stronger terms.

Heck, what about the parents who took care their kids every night while they grew up and never stopped caring for them after they’d moved away? And the brothers and sisters who’ve also shown patience, who’ve shared, and treated their siblings like they’re worth every extra effort?

And our friends who’ve hung with us through the best of times and the worst of times. Those friends who don’t abandon you when you’re down and are proud to be your rock when everything around you turns to sand.

There are a number of places where the impact of those who love us weaves through our lives with diabetes. It’s impossible to overstate our gratitude for everything you’ve provided, every adjustment you’ve had to make, and every fight you’ve fought on behalf of all of us. So…

Here’s to the Heroes.

Part cheerleader, part confidant, part warrior. If it weren’t for you, we might still be here. But probably not as well as we are today, even if we’re not so well anyway. Probably not so happy, though we may already know some happiness. Probably not so strong, because in many ways, you’ve allowed us to draw our strength from you.

Thank you.

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