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Posts tagged ‘type 2 diabetes’

Guest Post: E-Patient Dave Takes on T2D.

Dave deBronkart and I met several years ago through patient advocacy and online connection points, and I’ve followed his health story as he has simultaneously followed mine.  Dave comes from the perspective of a cancer survivor who almost died and has turned his “free replay in life” into a crusade to open healthcare’s minds to the idea of partnering with patients.  So when he messaged me to tell me that his lab results for A1C came back a little elevated, I watched our health stories smash up for the first time.  Nothing like the experience of trying to change an A1C to bring people together.

Today, Dave is guest posting about his experiences toeing line of type 2 diabetes, and his take on patient guidance in the diabetes space.  (And for more from Dave, you can follow his very lively Twitter account or blogOr just Google him and see all the fun that pops up.)

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Dealing with an “increased risk” of T2D
by ePatient Dave

A1c Nov 2014

A year ago this week I got some blood work done and it came back with this great big numeric fart in my face: the number 5.8, followed by “Increased risk for diabetes.”

WHAT?? I. Am. Not. A. Diabetes. Person. Those people are Kerri, or Amy, or Dana, or Manny, or Scott, or Eric, or Dominick. It’s all those people I like and respect and enjoy knowing, but it’s not me. I mean, they’re not me. I’m not them – they’re a special class. What?  I mean, I’m a kidney cancer guy, not an insulin problem guy. I don’t even know what that is, really. And I certainly don’t know how to do it.

In hindsight it feels like it was easier when I was diagnosed in 2007 as almost dead with kidney cancer. And that episode was over in less than a year. Me with a permanent thing? (I know I’m sounding like an uninformed idiot here. That’s what it’s like when you’re in the denial phase.)

What to do? Back then I got it in gear, doing what I could despite bad odds, and I was one of the lucky ones, aided by a great online patient community, which my oncologist said (in the BMJ!) he thinks helped save my life.

So, what to do this time? My PCP told me about a diabetes prevention program run by the YMCA that reduces by 58% the odds of ever developing T2D, if you lose x% of your weight and get 150 minutes of activity every week. I’d have to pay for it – a few hundred bucks – but it seems worth it.

Withings weight curve 2015-08-30And boy has it been effective for me – check the graph from our wifi bathroom scale. (My results were not typical!) I lost 30 pounds in four months (January to May), dropped a few more to 197 in August… I’m back up over 200 now but I’m also a gotta be active guy … first time in my life I’ve felt I have to get outside and move around.

It’s really a lifestyle program – they teach what I’d call food awareness, but it’s really not a diet. They have you count fat grams, with a book or an app or whatever, but that’s no diet. Then later they get into some more detail. But it’s not complicated. And they have you get active – no particular exercise regimen, no in-your-face smiling Sweat Coach.

You know what, though? Effing stupid insurance won’t pay for it.  If the insurance industry wanted to reduce medical spending they’d obviously spend a few hundred on prevention, so I conclude that they’re either stupid or corrupt. (I know I don’t usually talk this way but I honestly can’t figure out any either explanation. Can you?)

Plus, the effing stupid program isn’t available to people who aren’t yet officially pre-diabetes! It’s a good program, and my wife wants to do it too, but they won’t let her in because she’s not almost in trouble! What the !@#@! are these people thinking, not even letting someone buy their way into this course?

And you know what else?  When I measured my A1c again in September, it was up … it was worse. 5.9.

So now I’m in the middle of trying to educate myself about that.  Do you have any idea how hard it is to find out what to do about that??

Well, I imagine you do know. I’m here to say, for sure, that although T2D is different from T1D, it’s clear to me that the system (whatever that is) sure doesn’t make it easy for us to do the right thing.

I do know this: digital tools made (and continue to make) my own work on this a lot more practical … I mean, without important information and without feedback tools, how is anyone supposed to do a good job? As I always say in my speeches – “We perform better when we’re informed better.”

Here’s to a radical acceleration of the tools we need – driven by what patients say they – we – need!

And I’m not even T2D yet – I’m just frickin annoyed at how I can’t even get clear instructions on what I should be doing about it! I believe health goals should be patient-driven, and the C word (“compliance”) should be thought of as achievement. So why can’t I get good guidance on that??

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Health goals should be patient goals, and there needs to be clear guidance on how to achieve them.  Thanks for lending your voice here today, Dave. 

Care What the Community Thinks, Not What the Community Buys.

[I have a working relationship with Animas. My disclosures are here; please read them.]

During the middle of one of our discussion sessions, Daniela D’Onofrio let fly a statement that defined the whole blogger summit for me:

“Care what the community thinks, not what the community buys.”

Last week, the European Animas team brought a group of diabetes advocates together for a face-to-face discussion. This meeting is very special to me because it serves as a portal into the global diabetes online community, bringing advocates from different countries, speaking different languages, together at the same actual table.

And at that same table is the company responsible for believing in our voices: Animas. Several years ago, there was an air of awkwardness when it came to plunking different diabetes demographics into the room – did you really want to talk about the company RIGHT IN FRONT OF THE COMPANY? It felt weird. Strange, kind of like when someone asks if they have something in their teeth and you know you owe it to them to fess up about the giant chunk of broccoli sitting between their two front fangs but instead you say, “Nah! You’re fine,” and then nothing changes.

This was a meeting that included talking about that broccoli. We weren’t in an ivory tower talking about ivory tower-type things. We hit upon topics that felt uncomfortable at times, including the absence of type 2 voices at the table, and the perception of our meeting from the outside. It got sticky, the discussions, because we didn’t dance around any awkwardness. Instead, we tried to embrace it to move forward. When respect is coupled with honesty, more good comes of it. Now, years after those first meetings between the diabetes community and diabetes companies, people are being straight up about their needs and wants. There’s a power to that.

And, as a group, we recognized our privilege. We knew we were flipping lucky to be in that room, many with the support of Animas, and that the meeting is not a yearly guarantee. So we took advantage of our time together. We were honest, regardless of who was listening or taking notes. Our agenda included topics around incorporating and encouraging type 2 diabetes voices, diabetes and well-being, working through advocacy burnout, and building trust between diabetes companies and diabetes communities.

Annie has written about her experiences at the summit here, with some detail from her perspective on the sessions. More posts from other attendees are in the works, and the event was sort of documented on Twitter using the #IntlDOCExchange15 hashtag.

For me, the discussion about type 2 voices was the most eye-opening. It was understood that we were there with the Animas team, so therefore the folks in attendance were either Animas users or caregivers to Animas users. With insulin pumps not indicated for use by people with type 2 across the board, it made sense that the attendees were people touched by type 1 diabetes. Made sense, but still seemed wrong. We talked for a long time about how uncomfortable it can be, at times, to bring different groups together at times, but how necessary it is on the whole. I’ve been a longtime proponent of bridging the gaps between types (ashamed to admit my own preconceived notions in the past) and it felt good to see the people in our sessions talking openly about the common ground between the diabetes types, even if not everyone saw that common ground at first glance. People are people, regardless of their diabetes “type,” and to pretend we don’t have common ground is truly unreasonable.

Together, we’re stronger; no caveat added.

It was in that last session that Daniela summed up every company interaction (or simply every interaction, ever) that’s been productive, at least for me. Understanding and caring about the needs of the people touched by diabetes is what really matters; community and business objectives alike benefit from that level of interaction and involvement. This applies to people with type 1 diabetes, type 2 diabetes, type whatever diabetes.

So how can diabetes companies best serve the overall community? By caring more about what people think than what they buy. (Or, in terms that are more my speed: Give a shit about PEOPLE, not purchases.)

And I think that’s happening. Less slowly than before, and certainly surely, patient advocates across the health condition spectrum are raising their voices and being HEARD.

EU Blogger Summit

A photo posted by Kerri Sparling (@sixuntilme) on

Our group’s viewpoints were not representative of the entire diabetes community (just as my post here is not representative of the entire summit), or even of our respective regions, but it was powerful to have different individual opinions shared comfortably and openly. Many people in the group were returning to the meeting for the third or fourth time, but there were a few new faces, and it was encouraging (inspiring, even) to see those new voices welcomed into the fold.

I’m very appreciative that Animas trusted me to facilitate these discussions, and allowed me the opportunity to meet with my global DOC partners to move the mission forward. Especially when they, as a company, are not dictating the mission, but are instead along for the ride with our community as a partner. Props, and thanks, for that, and for pointing out the broccoli while simultaneously picking it out of their own teeth.

(And with that, I’ll end that particular gross and specific metaphor.)

Entering the Mancave.

There are issues we talk about openly in the diabetes community – tips on how to wear a pump, resources for good diet and nutrition, exercise goals, frustrations with blood sugar control, research, and on and on.  All of these topics matter because they play a role in diabetes management, and life as a whole.  But some of these topics are easier than others.  It can be easy to say, “I suck at counting carbs and I need help!” but it’s another discussion entirely to give voice to, “I’m dealing with reproductive issues and I need support.”

Those personal issues need discussing as much as the topics like counting carbs.  Complications are delicate.  Fertility is delicate.  Sexual issues are delicate.  Depression is delicate.  These topics are raw and riddled with social stigma, but they need unpacking.  Otherwise, they get heavier, already heavy all their own.

I remember when I first read about a woman who had given birth after decades with type 1 diabetes and it soothed a panic in me that was there for years, that idea that motherhood was beyond my grasp.  It was a moment, a good moment, that helped change the course of how I approached becoming a mother.

But I also remember the first time I found stories from people in their 20s and 30s who were dealing with diabetes-related complications.  This moment was good in a completely different way.  My diagnosis of macular edema in 2013 generated more than just a new medical condition to manage, but stirred up all these feelings of failure, guilt, and blame … a deluge I wasn’t really prepared for.  These emotions aimed to drown me.  I wanted to hide.  I had very dark, very uncomfortable thoughts that took me away, in a sense, from my friends and family.  I needed support, and am grateful that I found it.  Conversations with peers about dealing with complications at a point when I still felt young but realized how many decades of diabetes I’d logged helped me get through the initial diagnosis and kept me on the path of taking care of myself in order to preserve and protect, but also to continue living despite this new diagnosis.

“Me, too!” stories can help do that.  They confirm that you aren’t alone in what you’re dealing with and that there is support and camaraderie available even in the darkest of times.

I wanted to share a new website called The Diabetes Mancave, created by a writer who has decided to remain anonymous but not to remain silent, and his website is hosting discussions about the topics of male infertility, retrograde ejaculation, and erectile dysfunction, among other things.  From the site:

“You’re not going find my real name here. That’s because this isn’t something I am comfortable sharing online with these issues, because they are very personal and not something I’m comfortable letting everyone tie to my name.

But that aside, this also isn’t about just me. It’s about these issues, and the larger point of how so many men who may be experiencing these, just don’t share because they aren’t comfortable talking about them.

… In a Diabetes Community where we so often tell each other “You Are Not Alone,” I certainly do feel alone.

I’m hoping the D-Man Cave can help remedy that, to some extent. Because I don’t want to keep this in anymore, and I don’t want to feel so alone.”

Discussions and blogs (and Twitter profiles) like his are long overdue.  I’m really sorry you’re dealing with these issues, Diabetes Mancave guy, but I am so, so grateful you are putting them out there.  I hope you find community and support because by putting your story out there, you’re potentially providing a life preserver for someone else.  Thank you for being brave, and encouraging others to be brave, too.

What Are You Advocating For?

A discussion from Masterlab at Friends for Life:

Some answers:

My answer:

What’s yours?

Interview: Anna Norton on the Future of Diabetes Sisters.

Organizations that bring people touched by diabetes together have a special place in my heart, because peer-to-peer support checks that “whole person care” box on the mental diabetes management to do list.  The Diabetes Sisters organization is a group that brings women with type 1 and type 2 diabetes together in an environment that fosters open discussion, camaraderie, and learning.  Today I’m talking with Interim CEO Anna Norton, who is helping transition the organization into a new era.

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Kerri:  Thanks for taking the time to talk today, Anna!  We’ve known one another a long time, and you’ve been part of the Diabetes Sisters organization for years.  Can you tell me a little bit about how you got involved with DS?

Anna Norton:  Thank you, Kerri, for taking time out to interview me! I initially became involved with DiabetesSisters in 2011, when I attended my first Weekend for Women Conference in Raleigh, NC. That was the first time I had ever experienced being in a room with 99 other women with diabetes. I never realized how much I needed their understanding and support until that weekend; before that, I just managed on my own. Following that event, I was asked to join the planning committee for future conferences. In 2012, Brandy asked me to join the DiabetesSisters’ staff full time as Operations Manager, where I oversaw the National PODS Meetup program (our monthly support group meetings), the Weekend for Women Conference Series, online contributors, and other programs. Over the last four years, I’ve gotten to know so many people with diabetes, so many “movers and shakers” in the diabetes community, including you!

Kerri:  What is your personal connection to diabetes?  How does your personal experience color your involvement with Diabetes Sisters?

Anna Norton:  I was diagnosed with type 1 diabetes in 1993, when I was 18 years old. Initially, I had a few years of okay management, followed by years of noncompliance, depression and poor medical care. Eventually, I faced the reality that diabetes was controlling me and holding me back. Once I realized that, I was able to make changes in my management, starting with finding a new endocrinologist and going on a pump. Then I fulfilled my personal dream of getting married and having a child, which so many people told me I would never be able to do.  It’s been 15 years since I “transformed” my diabetes care and I’ve never looked back. Over the years, I have met so many women through DiabetesSisters, all at different stages in their diabetes care. I see myself in so many of them: a younger version of myself struggling to figure out how diabetes plays a role in her future, a mom managing both diabetes and a young child, a professional figuring out how diabetes will affect her career. I am inspired by every woman I meet living with diabetes, thriving with it, each with her own story of success. It’s important to me to have these women in my life, to support and guide me, and in turn, for me to do the same for them.

Kerri:  With Brandy leaving the organization (and she will be missed!), how do you see yourself stepping up and taking charge of this amazing group?

Anna Norton:  Brandy really did an excellent job in building a strong foundation for DiabetesSisters and for that, we are grateful. Over the last three years, she and I teamed up to create more programming to serve our online population and train more women to lead our PODS Meetups – monthly support groups that meet in over 30 cities throughout the US, including an online meetup. Over the years, Brandy entrusted me with the care of DiabetesSisters on so many levels, all the moving parts became very familiar to me. When Brandy decided to step down, the Board of Directors asked me to step into the Interim CEO role and continue the work. In my new role, I have the opportunity to meet supporters and funders that have helped shape the success of DiabtesSisters, and I get to share our member stories with them, as well as represent their needs. It’s important our funders to know how much their support helps change lives.

Kerri:  What are you most excited about, as CEO?  What scares you the most?  And how can the DOC help as you transition?

Anna Norton: I am definitely excited about continuing on this great path, growing our programs and services, adding more topics to our webinars, and reaching as many women as we can. I’m excited about adding some services for underserved populations, such as African American and Hispanic women. I have a busy summer ahead of me, representing DiabetesSisters at various conferences. The biggest challenge, though, is our small staff, although we’ve had some key volunteers step up to plate to help out, which is fantastic! During this time, I’d love for the DOC to reach out to me, introduce themselves virtually or in-person, and learn more about how the organization can serve them or ways we can partner up to impact more lives. I’d love to see women in the DOC step up as leaders and create more PODS Meetup groups in their communities, share their stories with the community through our website blogs, and provide online support through their own blogs.

Kerri:  Will the PODS meetings still continue?  How about regional conferences?

Anna Norton:  Of course! We just completed a weekend Leadership Institute for our PODS Leaders, which focused on more training for them. This program is, by far, our largest in-person, serving over 1,200 women annually, with a balance of education and support once a month.

Our national Conference Series – Weekend for Women, along with the Partners’ Perspective Program – is still alive, although we took this year off to focus on the Leadership Institute. It’s always a challenge with limited funds, so we’ve tried to provide the best programming in 2015.

Kerri:  What’s next for Diabetes Sisters, and how can the DOC get involved?

Anna Norton:  Our future is bright – and I’m glad to be a part of it. This is a time of continued growth for DiabetesSisters, and for all diabetes-related organizations. There’s so much to learn, so many treatments to trial, so much support to be provided. The DOC can move mountains with its influence, and encourage their audience to learn more about DiabetesSisters, read our website (www.diabetessisters.org), subscribe to our e-newsletter, listen to our webinars, and most importantly, get the word out about how we are a one-of-a-kind organization focusing on the emotional and social well-being of all women living with all kinds of diabetes.

Kerri:  Where do you see Diabetes Sisters in six months?  A year?  Five years?

Anna Norton:  That’s a great question! I definitely see DiabetesSisters continuing on the path of growth. With a great Board of Directors leading, there’s no doubt that will happen. In the near future, we will continue to build upon the foundation that is set, growing existing programs, trialing new ones, listening to our members and providing for their needs. Over the course of the following years, I see great partnership being forged with other organizations, maximizing our potentials in the diabetes support world. Eventually, I envision DiabetesSisters as the go-to for women living with diabetes to learn more about every stage of life including the years of young adulthood, relationship, pregnancy, parenting, peri-menopause and beyond, advance duration, etc.

Thank you, Kerri, for allowing me this opportunity, for being a DiabetesSisters’ cheerleader and for giving so much of yourself to the organization. I am excited to expand my role in the DOC and contribute to the support of our community!

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