Help Mindy Get Her Book Published

Mindy Bartleson is sharing this guest blog today. Mindy is 24 years old and has had type 1 diabetes since she was seven. She lives in Boston, works and volunteers in diabetes and is an avid diabetes camper! Mindy started a crowd funder, yesterday, to get her book on coming of age with chronic illness and mental health published. Read on!

They say the scariest thing is right before you start. Well, I’d hate to disagree with the statement, but for me… the scariest thing has always been asking for help and now I’m adding it’s also scary to admit something (sometimes big) out loud.

That’s what I’m doing.

You see, two years ago I started the journey of writing a book. I’m pursuing self-publishing. It’s about coming of age with chronic illness and mental health. My goal was to finish all of the content before I turned 24 so rose-colored glasses wouldn’t impact all of my experiences, and I was able to meet this goal last year. I’ve focused on the fact that yes these things can suck, but it doesn’t mean you can’t do it. I want to balance the positive with the negative of life experiences with honesty.

I’ve always wanted to be an author, but to be perfectly honest, I never saw myself writing this type of book. I never thought I’d write about growing up with type 1 diabetes, PCOS, endometriosis, ADHD, OCD, anxiety, loss, and a few other things I’ve experienced in 24 years, but I have!

Mindy is self-publishing an honest book about growing up with chronic illness and mental health. She wrote the content before rose colored glasses impacted her experiences too much. To help get this book published, you can visit the crowdfunding page to learn more, back her project, and help spread the word. You can also follow Mindy on Instagram, Twitter, Facebook, and her blog “There’s More to the Story”.

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Back to school…with diabetes

Forty-two years ago I went to second grade with something new. Not a new outfit or a new backpack, but something I would wear and carry with me for life…diabetes. I was seven years old and had been diagnosed with type 1 diabetes at the beginning of the summer after first grade. I was very fortunate that my parents, teachers, and friends helped me integrate diabetes into my second-grade life (and beyond). While caring about and for me, no one made it a big deal, and I was able to get on with all the things 7-year-olds would rather focus on.

The one downside I do recall is having to eat my snacks in the principal’s office. He’d joke with me while I sat eating my Nilla Wafers, or whatever my snack happened to be. And I really hated having to go to his office every day. After that first year I ate my snacks in class and it was never an issue again.

Of course, these days, diabetes management involves much more intervention – blood glucose monitoring, technology devices, parents “sharing” data, school nurses “sharing” data, and so on. As my own kids prepare to head back to school tomorrow, I’m thinking about all the kids out there who will be taking diabetes with them.

Whether it’s the first day of school with diabetes or it’s old hat, I hope everyone has their best year yet. I hope diabetes is just one small part of who these kids are and who they become. I hope they get to live life first and fit diabetes into it. And I hope they don’t end up in the principal’s office!

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Different Problems, Same Goal

Last Sunday at #AADE17, I had the honor to be part of a presentation on the language of diabetes. Three of us, who are authors on the upcoming joint paper on language use in diabetes care and education, presented to a packed room plus an overflow room. I mention this because it is evidence that people care, or at least are curious about, the impact our messages have.

(And it turns out that the way we talk to and about people with diabetes does matter.)

A colleague told me later that as she was leaving the room, two attendees were walking close to her and chatting about the presentation. One of them said, “they obviously don’t deal with real problems in diabetes.” This immediately reminded me of people who don’t think someone is a nurse unless she/he works in a hospital at the bedside.

Diabetes educators provide valuable services in all sorts of locations and positions. I teach current and future diabetes educators (and see patients part-time), my colleague is a clinical psychologist working solely with people who have diabetes, and my other colleague leads programs for diabetes educators all over the world. We each address real problems of diabetes every day. They may not be the same problems those particular conference attendees see or deal with, but they are very real problems for the people we see.

Regardless of all that, we are all working toward the same goal: providing high quality care and education to people with diabetes, so they can have the best possible health outcomes and live full lives. We know that language is a problem that all people with diabetes deal with, and each of us can do something about it.

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All Patients Are Liars

200_s“All patients are liars until proven otherwise.” Meredith Grey

Wow. Can you even imagine how my blood boiled when I heard that quote? Yes, I realize it was said by an imaginary character on a TV show, but it still made me a little crazy. It reminded me of all the things we hear about people with diabetes: non-compliant, non-adherent, lazy, don’t care, in denial, and so on. Oh boy does that stuff make my head spin.

The thing is, some people with diabetes do lie. They sometimes make up numbers, or give the wrong weight, or say they quit smoking (when they didn’t), or that they exercise regularly (when they don’t). What??

Actually, there may be a perfectly good reason for this.

I recommend stopping for a minute the next time we suspect someone isn’t telling the truth. I recommend stopping and thinking about why they might not tell the truth. What’s really going on? Were they shamed into hiding the truth? Are they afraid of how their provider will respond if they tell the truth? Do they feel it’s safer to give the “right” answers? Do they lack trust in the health care professionals they see?

I would suggest that what’s really going on is much more important than the “lie” itself. Most likely we can approach people in a way that establishes trust, which in turn gives people space to open up and communicate honestly. It can even improve care and outcomes.

As diabetes professionals, I hope we can listen to and accept anything a patient has to say.

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Time in Range

Two weeks ago I had the honor of taking part in the Glycemic Outcomes Beyond A1C meeting in DC. There were many smart, well-informed diabetes professionals in the room and it was fascinating to hear their thoughts on this important topic. It was abundantly clear that CGM is an important part of diabetes management and it would make sense to use it in diabetes research across the board. It was also clear that consensus has been reached regarding CGM metrics and now it’s time to get them published and into practice.

I really like the idea of CGM being the next EKG. How cool would it be for clinicians, researchers and patients alike to understand the language of CGM and the numbers it produces and then use it for improved outcomes?

One thing that stood out to me was a comment about focusing on “time out of range” instead of “time in range” (blood glucose between 70 and 180). My heart sank when I heard that. Why would we ever focus on something negative when we have something positive to look at? I thought, “wow, that takes us back to the dark ages.” Focusing on time out of range is like marking highs and lows in RED and only talking about them.

What about focusing on strengths (see last week’s blog post) and what is working, and then figuring out how to duplicate that and make it happen more of the time? What about asking, “what did you do here” when looking at in-range numbers, rather than “what did you do wrong” when looking at highs or lows?

I think of diabetes management as closing the gap – spending as much time in range as possible. While I’m ok with using blood glucose data to make changes,  I don’t agree with focusing on time out of range.

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Strength

“You never know how strong you are until being strong is your only choice.”

Managing diabetes every day takes strength. It actually takes a lot of strength – in many different areas. It takes diligence, perseverance, math skills, a sense of humor, acceptance, the ability to trouble shoot and let things roll off, the ability to start over (and over and over and over and over…).

Diabetes is not for the weak. So even if you think you are weak because your A1C is higher than you’d like, or you don’t get enough sleep, or you forget your insulin every now and then (or more), I’m going to guess that you are actually an incredibly strong person. You have more strengths than you know.

By focusing on your strengths, rather than your weaknesses, you can figure out ways to build on those strengths and improve your life. Find something (anything) that you are doing at all (or doing well) and see how you can apply that strength to living better with diabetes.

You might amaze yourself.

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Increased happiness

messy-bed-with-white-sheets_1203-615You’ll never guess what has been found to increase happiness, and we already know it’s not money…sleep!

I’m a huge fan of sleep – good quantity and quality sleep. I’ve written about the benefits of sleep in the past. Now there’s a study out that showed regular sleep leads to happiness. This study looked at college students, and I’m guessing the results will cross over to those who aren’t in school as well.

So in addition to improved blood glucose levels, higher energy, less weight gain, banishing under-eye circles, improving mood, and lowering risk for illnesses like the common cold, getting good and regular sleep can make us happier.

Good night!

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What was said vs. what we hear

In the summer of 2009, the kids and I drove from Colorado to New Hampshire with a stop at the Canadian Niagara Falls. As we drove across the border, an official leaned out of her booth and asked the typical questions – Where are you coming from? How long are you staying in Canada? Where are you going?

Then she asked, “Do you have any weapons in the vehicle?” to which I answered, “No.” We drove on. A minute later my daughter asked, “Did she say ‘Webkinz’?” with panic in her voice. I assured her that no, the attendant had asked about weapons, not Webkinz, and her approximately seven stuffed creatures surrounding her in the back seat were safe from confiscation.

For whatever reason this little miscommunication reminded me of how easy it is to mis-hear something at a diabetes visit. It’s also easy to say something that can be misinterpreted. For example, when a health care professional says, “how’s your control?” that could mean

  • how are you doing (physically, emotionally)?
  • what are your numbers doing?
  • what’s your A1C?
  • are you taking care of yourself?
  • do you need anything from me?

or something else completely.

From the patient perspective, “how’s your control?” could be interpreted as

  • what are your numbers?
  • how successful are you at managing your diabetes?
  • are you a good person?
  • how good a job are you doing at keeping all this together?

and so on.

Just like my daughter’s concern about her Webkinz, we have a tendency to hear what we’re worried about. If we’re worried about being judged, we’re likely to hear judgment. How amazing will it be when diabetes communication is simple, straight-forward and judgment-free with no cause for worry? I believe it can happen.

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Type yes if you agree

Does anyone else out there cringe every time they see a Facebook post with type yes if you agree at the bottom? (I’m not on Instagram, so I don’t know if it happens there as well.) I have been experiencing this phenomenon for weeks – maybe even months – now, and today I think I figured out why.

Type yes if you agree – to me – is like asking someone to be “compliant.” Rather than presenting some cute quote or phrase or inspirational message and letting people get what they will out of it, type yes if you agree is like saying, “you do agree with me, right”?

It’s like the whole compliant/non-compliant message people with diabetes get all the time. The health care professional delivers some nugget of wisdom and then expects you to follow it. If you do, you’re compliant (good, etc.); if you don’t you’re non-compliant (bad, etc.).

What if you simply don’t agree? What if you have a different or better idea? Couldn’t those posts say let’s discuss or enjoy your day or nothing at all below the cute saying?

Maybe the whole type yes if you agree thing really just reminds me of a chain letter. Remember those? Ugh. I’ve even found myself looking for those annoying words on every post.

It’s making me a little crazy. Type yes if you agree.

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Because I can, not because I have to

2015-04-14_00_17_35_Stairs_and_escalator_in_the_corridor_connecting_Concourse_E_with_Concourse_D_in_Salt_Lake_City_International_Airport,_UtahI have this weird habit (weird to my kids, anyway) of taking the stairs instead of the escalator, whenever I have the choice. It happens mostly in airports, and sometimes in malls, conference centers, and other places. My kids used to ask me why I took the stairs, and I would answer, “Because I can.”

I know there will come a time(s) when I can’t take the stairs because of injury, fatigue or even age. But for now I can and I do and I will. When I saw do it because you can, not because you have to in a recent blog article, I was reminded of the stairs vs. escalator thing.

It seems like a healthy, positive, and empowering approach to me. What if we looked at everything that way? What are we doing in life right now that we could switch to a “can” rather than a “have to”? And what effect would that have on our attitude?

I’m going to start right now.

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