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Posts tagged ‘type 2 diabetes’

5 Worst Things to Consume If You Have Diabetes.

Today is World Health Day and the focus is on diabetes.  Every media outlet in the world is picking up on this health story and twisting it just so, highlighting misconceptions aplenty and feeding the stigma about diabetes.  Messages get muddled and broken down into clickbait headlines that sometimes hurt our community more than they educate.

What are the five worst things to consume if you have diabetes? HINT: This is not a list of foods.  

  1. Misconceptions. Don’t consume them.  There is a public perception about diabetes as a whole and about the individual types – don’t let society’s misinformed views shape your own.
  2. Other people’s misunderstandings. Don’t consume them.  Don’t let people’s ignorance about diabetes ruin your day.  Correct their information and move on.
  3. Misinformed messages from the media. Don’t consume them.  Address and correct articles that perpetuate stereotypes and misinformation. We’ll never be happy, as a community, with a public health campaign, but we can take steps to help shape it in a way that feels right.  If not us, who?
  4. Anger and hatred towards our community. Don’t consume it.  People get angry about diabetes and the people who have it are often the target of blame, shame, and disgust.  Don’t let anger infiltrate our community.  We’re better than that.
  5. Stigma. Don’t consume it.  Don’t swallow it and don’t let it define you.  Taking care of your health is nothing to be ashamed of, so wear your efforts towards good health with pride.


What do I wish people knew about diabetes?  This:  

There is more than one kind of diabetes.  This isn’t a knock on my type 2 and gestational diabetes friends, but definitely a knock on society’s perceptions at large.  People have one musty, old perception of what diabetes looks like, and it’s always someone older, heavier, and lazy.  Would they be surprised to meet our fit type 2 friends, or the 20 year old gestational PWD?  Or a “juvenile diabetic” who isn’t eight years old? Or any of our community friends? Diabetes doesn’t have “a look.”

Diabetes affects more than just the person playing host to it. I am the one wearing and insulin pump, a continuous glucose monitor, and actually feeling these blood sugar highs and lows.  But I’m not the only one affected by diabetes.  My parents had to care for me when I was young, acting as my pancreas.  My friends have been affected by my lows and highs while we’re hanging out, sometimes forced to jump the bar and accost the bartender for orange juice.  (True story.)  And my husband has taken on this disease as his own as best he can, making it such an integrated part of our life together that I don’t feel alone.  Diabetes isn’t just mine.  It belongs to everyone who cares about me.

Diabetes isn’t just a physiological disease.  Mental health matters when it comes to diabetes management. It’s not just a question of blood sugar levels and insulin supplementation.  It’s about managing the emotional output that comes as part of life with a chronic illness.  It’s about the guilt of complications.  The pressure to control an uncontrollable disease.  The hope that tomorrow will come without incident. I feel that the emotional aspects of diabetes need to be attended to with the same care and diligence as an A1C level.  Maybe more so, because life needs to be happy, whether it’s a short life or a very long one.

Diabetes isn’t easy.  We just make it look that way sometimes.  Some of the perceptions that the general public has is that diabetes is easy to handle.  “You just wear the pump, test your blood sugar, and watch your diet and you’ll be fine, right?”  Wrong.  You can do the exact same thing every day and still see varying diabetes outcomes. It’s never all figured out.  Diabetes is a daily dance of numbers and emotions and even though we, as a community, make it look easy sometimes, it sure isn’t.

No diabetes is the same. Even within a community of diabetics, there are still widely varying ways of treating diabetes and even more ways of dealing with the emotional aspects.  There’s no winning combination and no “right” way to deal with this disease.  Being on a pump means you use a pump to infuse your insulin – this doesn’t necessarily mean you are taking better care of yourself than the person who opts for injections.  Low-carb doesn’t work for everyone, and neither do certain medications.  What works for you may not work for everyone. It’s important to remember that this disease, like life, doesn’t have a predictable path, so there are plenty of “right’ ways to handle it.

Just because we don’t look sick doesn’t mean we don’t deserve a cure.  That statement sums it up for me.  We might make it look easy, but it isn’t.  There’s no rhyme or reason to this disease, and even with the best care and the best intentions, complications can sometimes still come calling.  And their effects are devastating.  Diabetes, of all kinds, deserves a cure.  No one asked for any of this.  We deserve better than society thinking that diabetes isn’t worth their attention.

We deserve, we fight for, and we advocate for a better life, better health outcomes, … we deserve a fighting chance for a cure.

Guest Post: Diabetes Isn’t Easy, But Acting on Policy Can Be.

This morning, Bennet Dunlap is taking over SUM because he has something to say.  Changing health policy has become a project of Bennet’s for personal reasons, and with the help of the diabetes community, he and others are aiming to make a difference.  Today he’s writing about the Diabetes Patient Advocacy Coalition and how it’s aiming to be the “easy button” for the DOC and policy.  

And because he used the phrase “rat bastard” more than twice in this guest post, I’m particular partial to it.

 *   *   *

Diabetes is not easy. It doesn’t fit well into life. Diabetes is chronic – a word that here means the rat bastard never goes away. Never going away doesn’t fit into a medical system designed for acute care, meaning a cute little health issue that gets cured.

Readers of Six Until Me already know diabetes is not cute or cured, doesn’t fit into life, and is the aforementioned rat bastard. So you are probably not shocked to know that diabetes doesn’t always fit into health policy either.

Health policy runs into diabetes at many levels. There are more than three dozen federal agencies that touch diabetes. State laws impact schools, diabetes education, and even infection protocols in hospitals and extended care facilities. All the people, in all those positions, have all the same mix of understanding and confusion about diabetes as the general public they represent. A few get it; most don’t and some are woefully misinformed.

I suggest that living well with diabetes is a model for good diabetes policy advocacy. We live better with the help of others. We have healthcare teams to help with the clinical aspects of care and help translate academic advances into those programs. We have communities to help with the equally important psychosocial aspects of staying engaged with the rat bastard, diabetes.

On the policy side, we have professional and academic groups that speak to the science of policy issues. There is a whole bowl of AlphaBits of these including ADA, JDRF, AACE, AADE, DTS, CDC, NMQF and more. I think that policy advocacy is most successful when health professionals and patients work together. A FasterCures white paper on advocacy, Back To Basics, as a catalyst for health policy change writes:

“The gold standard should be to have both scientific expertise and a group of patients who can speak both to the science AND the urgency needed to make change.”

Our job is urgency.

Change happens when officials hear the real needs of people with diabetes, particularly when we are their constituent. But if diabetes does not fit into life, learning the intricacy of politics certainly is one more unpleasant thing too many.

What we need, is an easy way to create diabetes policy urgency.

I got that, in another spoon full of AlphaBits; the Diabetes Patient Advocacy Coalition. But that doesn’t fit on a spoon so DPAC for short. It makes it easy to keep track of issues, opportunities, find your elected officials, and know those officials’ positions. DPAC does all that so you don’t have too.

Most importantly DPAC makes it easy to act.

Here is an example: We all know that CGM is a game changer in diabetes care. Medicare does not cover it. Many succeed in fitting diabetes into their lives with the help of CGM, and they lose it as a care tool when they age into Medicare. That is not right. One hundred and eighty-five members of the US House and thirty-seven senators agree. They have cosponsored a bill to cover CGM. We should thank the supporters and urge others to join.

DPAC makes that easy.

Click the logo, fill out your address, and the DPAC will look up your elected officials. It checks to see if they have already cosponsored the bill and drafts a note of thanks to supporters or an ask of those who have not yet joined as cosponsors, to do so. You can add your story to the message or just send the message along.

Easy.

I mentioned three dozen federal agencies earlier. There is a bill to have them work together. A generation ago a similar effort brought us DCCT and tight control. A new generation of drugs, devices, a software promises another opportunity to change diabetes care. DPAC has an easy button there, too.

Diabetes is chronic; that means we need to keep at it to be successful. We need to keep at policy too, or elected officials will think the rat bastard has gone away.

Diabetes isn’t easy but PDAC makes it so acting on policy can be.

  *   *   *

Bennet is a passionate advocate for better diabetes care.  He is the father of four, two of who live with type 1 diabetes. Like millions of Americans, Bennet tries to be successful with type 2 diabetes himself.  He has created a variety of social media projects including the advocacy campaign StripSafely, DrinkingWithDiabetes a resource for families sending type 1 students to college, The Diabetes Patient Advocacy Coalition and his blog Your Diabetes May Vary. Bennet is an integral member of the Spare a Rose / Save a Child community supporting the IDF’s Life for a Child program. Bennet has given patient perspectives in public views before the FDA’s Endocrine and Metabolic Drug Committee on diabetes medication. Recently he has been a consumer reviewer for both PCORI and CDMRP grants.
 
With a degree in finance from Lehigh University, Bennet pursued a career in commercial banking. Following the diagnosis of his children with type 1 his passion for advocacy grew and he earned a master’s in health communications from Boston University to serve better the diabetes community.

Guest Post: Making Connections.

Stephen Shaul is one of the most insightful – and kindest – people I’ve come across in the last few years, and I really respect his thoughts on all-things diabetes.  (Links to his blog and podcast are in the bio below.)  Today, while I’m en route to 10,000 doctor’s appointments, Stephen is taking over SUM to talk about the simplicity, and the power, of making connections.

  *   *   *

“Excuse me, is that a phone there on your belt?”

“No, it’s my insulin pump.”

With just one question and a simple, short answer in a doctor’s office waiting room, a conversation was started between me and a new member of the diabetes community. I put down the publication I was browsing and took a seat next to him.

The man was newly diagnosed, type 2, and had not yet even heard of an insulin pump. He had been diagnosed about ten days earlier by his primary care doctor. Initially, he resisted the idea of going to the hospital. In that moment, he wasn’t sure how to proceed. Everything was so new and so much, he told me. He was there for a follow up appointment. He looked scared. Really scared.

In the few moments we shared together, he confessed to not knowing much about diabetes, but he “must be bad”, because his blood glucose number at diagnosis was unusually high. I assured him that if his number at diagnosis wasn’t unusually high, he wouldn’t have diabetes, and while diabetes is bad, he as a person is not.

I told him a couple of things that I tell many people with diabetes: that the hardest thing about living with it is the fact that it’s always with you and you can’t walk away from it; and that BG checks and A1c results are just benchmarks… something to base treatment on, but not something to assign self-worth to. I finished up by telling him that there are many resources online to go to for information and support, and that he is not alone in living with a condition that affects 29 million people in the USA and 415 million worldwide.

You know what? Five years ago, I couldn’t have had that conversation. Five years ago, I didn’t know much about diabetes, I didn’t know much about the online community, and I certainly didn’t know how to talk about it. What’s changed since then?

Well … I found people online telling their stories and engaging with others whenever they had the chance. They made me want to do the same thing. They made me want to help someone newly diagnosed not feel so alone. I actually learned what to say and how to say it from others who have been in similar situations before. I learned the importance of making connections and opening up a brave, new world to someone who didn’t even know that world existed before they met me.

I also remember my diagnosis, how initially I thought I had everything together, and then walked helplessly through life as one awful A1c piled up after another. Let’s face it: if you’ve never been exposed to diabetes, it’s easy to be overwhelmed by the flood of new information (and misinformation) that comes with a new diagnosis. How I wish I had someone then to help me cut through the confusion.

As I was called back to see the doctor, we shook hands, I wished him all the best, and I asked him to call me if he had any additional questions. At the end of our conversation, he seemed more at ease. At least I hope he was. I don’t know.

Diabetes has a way of making us feel isolated, especially in the beginning, when we need reassurance the most. Making connections that support, empower, and foster communications between those living with and affected by diabetes can often be as critical to our health as the insulin and other drugs we take. It only took a minute to welcome a new member to the community. Here’s hoping my new friend finds survival along with comfort, and happiness instead of fear. And though I really hope we could have no more new diagnoses, here’s hoping he can find a way to help if he crosses paths with a new diagnosis in the future.


Stephen has been living with Type 1 diabetes since 1991. Since April 2012, he has been writer of the diabetes blog Happy Medium, and since then, has covered a number of diabetes-related subjects, including participation in clinical trials, living a week gluten free as if he were newly diagnosed with celiac disease, and the complex relationship between patients, corporate interests, and government entities.

Since July 2015, he has been host of the Diabetes By The Numbers podcast, where he interviews newsmakers in the diabetes community. He advocates for people with diabetes everywhere through support of legislation designed to reduce the burden and ensure safety of people living with diabetes, and through encouraging others with the phrase “I support you… no conditions.”

 

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.)

*   *   *

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??

*   *   *

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.)

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