#dBlogWeek: Diabetes and the Unexpected

Where the DOC has unexpectedly led me

We’re at the beginning for Diabetes Blog Week and I’m already coloring outside the lines.

Today’s prompt is called diabetes and the the unexpected. Here’s the description:

Diabetes can sometimes seem to play by a rule book that makes no sense, tossing out unexpected challenges at random. What are your best tips for being prepared when the unexpected happens? Or, take this topic another way and tell us about some good things diabetes has brought into your, or your loved one’s, life that you never could have expected?

Rule book? Random challenges? Yeah, none of that is really resonates with me. What could I have never expected from diabetes?

What I didn’t expect to find after my diagnosis was vibrant and varied diabetes online community, a.k.a. the DOC.

The DOC isn’t just the troup of patient bloggers sharing their BTDT experience. Although there are plenty of active (and semi-active) patient and parent bloggers in the DOC, some of whom are participating this week.

It’s also journalists like Wil Dubois, Mike Hoskins, and Amy Tendrich at DiabetesMine who track everything from the latest research updates to the daily challenges of life with diabetes. And the folks at DiaTribe and Diabetes Daily. These are folks who are actually subject matter experts. They’ve tracked diabetes-related news over time, so they know the history behind the current story. Some of them live with diabetes, others have experienced life with diabetes through someone close to them. Because they understand the true impact diabetes has of people’s lives they’re not satisfied with just reprinting press releases.

It’s advocates like Bennet Dunlap and Christel Marchand Aprigliano who established Diabetes PAC which not only tracks diabetes policy issues but also helps people take political action in support of better health care. And it’s leaders like Manny Hernandez who established the Masterlab program at the Diabetes Hands Foundation to train up-and-coming diabetes advocates.

It’s medical professionals who value the patient’s voice and are committed to working with (and not simply treating) people living with diabetes. Some, like Hope Warshaw even promote the usefulness of the DOC to their patients and colleagues. There’s even been a scholarly article written about the potential benefits of participating in the DOC.

It’s even industry folk who help nurture the social media presence of DOC members. The Roche Diabetes Care Social Media Summits are legend. Now Janssen hosts the annual HealtheVoices conference, this year welcoming 105 patients advocating for 35 medical conditions.

In the DOC I found a generous spirit of people willing to share. We share BTDT experience, knowledge about diabetes and healthcare, and the gallows humor that comes from knowing we won’t get out of this world alive. That weird, wonderful mix has helped me learn how to problem solve when faced with the unexpected. It’s strengthened my voice as an advocate for better health policy and coverage. And it’s given me hope that my future is filled with something more than endless plates of salad.

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There are many more people in the DOC who I’ve learned from and enjoyed spending time with. No way could I mention everyone in a single post. Know that I value your efforts and impact even if I didn’t mention you by name or organization. And I wish everyone in the DOC many more healthful, happy years in our community.

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DISCLOSURE: I attended this year’s HealtheVoices conference. Janssen Global Services, LLC. paid for my travel expenses for this conference. All thoughts and opinions expressed here are my own.

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Hey Rep. Ryan, it’s clear you don’t see me as a person

Looking at Speaker Paul Ryan’s argument against Obamacare it’s all about money. Not about the people or healthcare, for that matter.

As I mentioned before, it’s been a couple of wild months filled with whirlwind activity on healthcare reform.

I wasn’t really surprised at the political shenanigans in Washington, DC. After all, this isn’t my first political rodeo.

But, I was surprised by how this one felt. This one was different.

This one felt…personal.

Not personal, in the sense that it is important to me personally or will have a direct effect on my life. Although both of those things are true. But personal in the sense that it felt like I, as a person who needs health care and insurance, am being targeted for punishment.

It all started with the budget

As with many things, it all started with money. In this case, the federal budget. How much tax money are the feds going to spend on health care?

Looking at Speaker Paul Ryan’s argument against Obamacare it’s all about money. Health insurance premiums are higher. Deductibles are higher. Subsidies are going up. Not to mention the effect this is having on the budget deficit.

Budget reconciliation was the first phase of Speaker Ryan’s three-pronged approach to “repeal and replace.” And as a tactic, it was brilliant. The process moves fast. The bill must remain focused, with no “extraneous matter.” And the American Health Care Act had a fast, focused life—going from its introduction, through committee and floor debate, to its death in just four days.

But it doesn’t end there

Once the American Health Care Act was introduced and the details became clear, the circus ring turned into a boxing ring. And I, as a patient, became the punching bag.

Each day, as another detail became clear or another analysis surfaced, i felt another body blow. Another anxiety-provoking change. Another unbelievably cruel twist.

No denial for preexisting conditions was promised. But, if there’s a gap in coverage your insurance company can charge you a 30% penalty on your annual premiums. BOOM!

No more individual mandate was declared. But, if you’re an older person insurance companies can charge you 5x the premium they charge younger (presumably healthier) people. And the individual tax breaks got a lot smaller while insurance industry tax breaks got a lot bigger. BOOM!

No more funding for Medicare expansion. States will get to decide whether to include mental health and addiction services. And the CBO estimated as many as 24 million people could lose their health care insurance. BOOM!

Really? It’s okay for 24 million people to loose health insurance? It’s okay to cut health services?

I was left punch drunk.

Where did all the good stuff go?

The American Health Care Act was all about the balance sheet. How did those figures look? More money to the insurance industry. Less money to the states.

What happened to essential health benefits? You know, the part of Obamacare that says health insurance needs to cover things like check-ups, maternity care, pediatrics, and mental health. They were nowhere to be seen.

Less coverage for the individual.

Just what kind of health insurance were people going to end up with? Who knows? Surely there would be some kind of affordable health insurance, even if it didn’t cover much of the services needed to regain or maintain health.

There. Just don’t get sick and you’ll be okay.

And if you’re already sick? Well, you’ll just have to pay for it.

 

 

The True Cost of Stigma in Type 2 Diabetes

Published by Diabetic Connect. Because type 2 diabetes is seen as preventable, we are blamed…

Published by Diabetic Connect.

http://www.diabeticconnect.com/diabetes-information-articles/general/2624-the-true-cost-of-stigma-in-type-2-diabetes

Diabetes, it’s a glass half-empty kind of thing

What if we considered the half-empty part of diabetes to be an opportunity to fill our lives with good stuff?

Every once in a while I get asked why I think people with Type 2 diabetes aren’t as active in social media as people with Type 1. We see a strong representation of people living with Type 1 in social media. Type 1s share their daily triumphs and trials, most presenting a defiant warrior-like stance in the face of “ducking fiabetes.” When we look for the Type 2 voices in social media we find fewer and they are often muted.

I used to think it was because of the age difference. Now I’m not so sure that’s the case. There are plenty of people of all ages active in social media over all.

Another thought I’ve had is that for most people with Type 2, diabetes is not central to their sense of identity. They had a whole life before diagnosis. They didn’t grow up being told their lives would be somehow limited by this chronic disease. But now it figures largely in daily routines and visions of the future.

Lately a new theory has entered my mind. It’s the idea that we tend to look at diabetes as a glass half-empty kind of thing. Much discussion about living with Type 2 diabetes centers on all the things that have to be (or should be) taken away. Carb-heavy comfort foods. Carefree daily routines. Worry-free futures that promise good health.

The emptiness of the glass shows us what is gone, never to return. There’s a sense of loss. There’s the feeling of mourning. What will replace it? Restrictions. Complicated medicine routines. Society’s blame and shame.

But what if we chose to fill that empty part of the glass with good stuff instead?

Prediabetes? Ain’t nobody got time for that!

Prediabetes? Ain’t nobody got time for that! The Ad Council’s type 2 prevention campaign misses the mark.

In the first of its kind campaign the ADA, AMA, and CDC released a series of Ad Council public service announcements aimed at preventing type 2 diabetes. The campaign is called So…Do I Have Prediabetes?

Boy did they miss the mark.

The campaign takes on a snarky tone. Now, I’ve been known to enjoy a snarky joke as much as the next person. But this snark is aimed at the patient, that just adds to the blame and shame people living with diabetes, especially type 2 diabetes, already face.

You eat bacon? Well, don’t. It’s a variation on the “Eat 100 candy bars and what do you get?” joke. We’ve all heard the punch line: Diabetes!

Only, it’s not true and it’s hateful. And when people feel blamed for their health or shamed for their behavior that disempowers them to change. Don’t believe that? Listen to what the research of Jane K. Dickinson, CDE has to say.

And what if you’re a busy mom?

Well, this busy mom doesn’t appreciate the sentiment. Yeah, busy-ness is a common excuse. I’ll cop to using it myself once or twice. Okay! I used it for about a million years while I was in pre-diabetes.

The doctor’s response to the patient saying she’s a busy mom made me think of this:

CharlieBrownLucyFootball

Lucy van Pelt pulling the football away at the last moment yet again and the ever trusting Charlie Brown taking a tumble mid-kick.

I don’t want my doctor to be paying a cruel joke on me. And I don’t want to end up the looser in this scenario.

But more damning is the image that comes to my mind when I reflect on what the busy mom says. Her distress is real. And yet her words come off more like this:

Ain't nobody got time for that!

And this is just plain wrong.