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Even Small Medical Advances Can Mean Big Jumps in Quality of Life.

I came home after two days away to a flurry of discussion about Sunday’s New York Times article, “Even Small Medical Advances Can Mean Big Jumps in Bills.”

My knee-jerk response was to be thrilled that type 1 diabetes received above-the-fold coverage in the New York Times.  Reading the profile of and quotes from Catherine Hayley felt like a fair assessment of life with type 1 diabetes, and painted Catherine not as someone who suffered from anything, but who worked hard to power through a whole lot.  I wished the columnist had been more focused in her discussion (Is this article about health system economics?  The cost of treating type 1 diabetes?  The complications associated with diabetes as a whole?) but I am not the best person to discuss a lack of focus because … (shiny thing)

That said, the quote that really bothered me was right at the beginning:

“But as diabetics live longer, healthier lives and worries fade about dreaded complications like heart attacks, kidney failure, amputations and blindness, they have been replaced by another preoccupation: soaring treatment costs.”

Really?  It’s that simple?  I wish I was being dramatic, but every, single night before I go to sleep, I think about whether or not I’ll wake up in the morning.  It’s not a thought I belabor, and at this point, I sometimes debate the possibility almost pragmatically, calculating insulin on board and exercise I’ve done recently, thinking about my last A1C or EKG, thinking about how 27+ years of type 1 diabetes has affected my body.

I wish financial worries were replacing others, but instead, I worry about diabetes-related complications in addition to cost of treatment.  However, the trick is that these advanced treatments will allow me to worry about diabetes into proper old age, because I will live longer, and better, with access to this technology.

Devices like an insulin pump, which can precision dose my insulin and help efficiently calculate and track insulin use throughout the day, help me fall asleep with more peace of mind.  Wearing a Dexcom, which alarms when my blood sugars falls out of my pre-established comfort zone, helps me fall asleep with more peace of mind.  Peace of mind, when living with a complicated chronic illness, matters.  These are not devices I wear because they’re “cool” or “fun.”  I don’t care what colors they come in or whether or not they resemble an iAnything – I want it to work and work well.  I turn to technology to help best manage my diabetes because my pancreas stopped making insulin almost three decades ago, and these advances in treatment have improved my quality of life immeasurably in some ways (emotional health) and very measurably in others (better blood sugar control).

One other quote was particularly frustrating, not because it was the study that was referenced, but because the study itself is over 20 years old:

“But that all changed after a landmark study in 1992 showed that patients did better if they maintained very tight control — keeping their blood sugar within a nearly normal range by checking it frequently and taking multiple insulin shots a day.”

Where is today’s modern DCCT?  Where is the study that’s looking at the influence of insulin pumps, CGM, and insulin analogs on patient outcomes?  (Please tell me this study exists – I hope it does!)  We’re talking about modern-day diabetes treatments and lining these discussions with studies involving somewhat out-dated treatments.  I’ve seen the benefits of pumping and CGM use on my personal diabetes management, and I can only hope that the overall PWD population sees positive outcomes in their management when given access to these technologies.

The discussion I’ve seen across the DOC and the web at-large has been enlightening, and I’m really glad to see and hear people talking about diabetes with such excitement and passion.  Diverse opinions should be shared, and heard.  Progress is important.  Innovation matters.  And in my opinion, modern-day diabetes should be treated with modern-day technologies.



[hi, there are my disclosures]



Think Like a Pancreas: The Blog.

I’ve known Gary for several years, and most of my interactions with him have been silly (confessing that my daughter busts out dance moves to the Philadelphia 76er’s theme song), so I leaned on his website to pull a formal bio description.  “An award-winning Certified Diabetes Educator, Masters-level Exercise Physiologist and person with type-1 diabetes since 1985, Gary Scheiner has dedicated his professional life to improving the lives of people with insulin-dependent diabetes. He was recently named 2014 Diabetes Educator of the year by the American Association of Diabetes Educators.”

Pretty awesome.  And now Gary is bringing his personal experience as a PWD and professional expertise as a CDE into the blogging space, with the Think Like a Pancreas blog.  I wanted to catch up with him about the how, and the why, of making the decision to join the online conversation:

Kerri:  For the few who don’t know your story, what’s your connection to diabetes?

Gary:  I was diagnosed with type-1 diabetes back in the summer of 1985 in a town just outside of Houston, Texas named “Sugarland”.  A coincidence?  I don’t think so.

Kerri:  Makes for a good story, though.  When did you start becoming aware of/involved in the DOC?  What sites were you frequenting back in the day?

Gary:  I was first “introduced” to the DOC by Allison Nimlos (nee Blass) (love that word, nee.  reminds me of the Knights of the Black Forest in Monty Python and the Holy Grail).  I’ve also been friends with Scott Johnson for many years, and anyone who knows Scott has to become connected with diabetes social media.  The first sites I can recall visiting were David Mendosa’s Living With Diabetes, Kelly Close’s diaTribe, Amy Tenderich’s Diabetes Mine, and the Children With Diabetes site (since I’m on their faculty).

Kerri:  So what made you decide to take the leap into social media?  

Gary:  Our national/international clientele are increasingly active on the web.  It seems like the best way to communicate.  Our practice has been publishing a newsletter for nearly 20 years.  It started out as a printed publication called “Control Solutions” which then morphed into an e-publication called “Diabetes Bites”.  However, putting them together was quite labor intensive.  Blogging allows me and all of our Integrated Diabetes Services clinicians to get the word out in a timely and simple manner (better known as “fast” and “cheap”).

Kerri:  What’s weirder:  Blogging or Twitter?

Gary:  It’s hard to get really weird in less than 140 characters.  But both have their place:  Twitter is great for sharing minor snippets of news and experiences.  Like today, I couldn’t believe that TSA at Seattle’s airport was merging people in the pre-check line with people who had no background checks whatsoever, and sending them all through the same minimal security process.  Talk about a major flight risk!  It also makes the pre-screen process a complete waste of time.  Anyway, I was able to share that on twitter – gave me a chance to vent and perhaps raise the ire of people who can do something about it.

Blogging allows us to delve more deeply into items of interest to the diabetes community.  We can offer up a mix of key facts, experiences and personal opinions in a concise and lighthearted way.  My “Sensor vs. Sensor” blog comparing the various CGM systems, for example, has become been a topic of online and live conversation worldwide since it came out last month.

Kerri:  In your blog announcement, you said you wanted to “keep it fresh, informative and unbiased, yet opinionated and entertaining.”  In a pleasantly-saturated market, how do you plan to do that with your site?    

Gary:  You have to remember, our blog team is very unique.  The information is coming from recognized experts – nurses, dietitians, exercise physiologists and mental health professionals who are certified diabetes educators.  There aren’t many bloggers with those kinds of credentials.  All of our clinicians have type 1 diabetes themselves and extensive personal and professional experience with virtually every diabetes medication, product, and form of technology on the market.  And we are not formally affiliated with any pharma company or device manufacturer.  That allows us to KEEP IT REAL and remain UNBIASED and CREDIBLE.  You won’t find that in too many places.

Kerri:  So what are your social media goals?  Looking to change the web? The WORLD?

Gary:  Just want to entertain and inform our little corner of the diabetes world.  Our focus is truly on the type 1 diabetes community, as well as type 2s on intensive insulin therapy who take their diabetes every bit as seriously as those with type 1.  I’ll be very happy if each post can make one person smile, learn something they can apply, or just nod and say “Hey! Now I get it!”

Kerri:  And how can people connect with you? 

Gary:  First off, I have to make a living.  That comes from helping clients meet their diabetes management goals.  Our practice offers individual consulting services all over the world via phone and the internet.  Details are at our website, or people can call our office for more info:  toll-free in North America. 877-735-3648.  Outside North America +1 (610) 642-6055.

We also offer webinars on advanced topics in diabetes self-management at Type 1 University.

Our blog is called “Thinking Like A Pancreas, “named after my favorite diabetes book  – guy who wrote that must be some kind of genius) [Editor's note:  Clever, Gary.  Clever.]  , and it is located right on our website.

Our twitter handle is @Integ_Diabetes

Our facebook page is simply Integrated Diabetes Services

Kerri:  Anything else you’d like to add?

Gary:  When I’m in need of a good laugh, if The Simpsons aren’t on, I can always turn to the Kelly & Kerri shows (@diabetesalish and @sixuntilme).

Kerri:  Thanks, Gary!  Welcome to the blogosphere, and I’m looking forward to seeing how many Simpsons references you can cram into one post.  And if you have trouble adding links to your blog posts, don’t blame me:  I voted for Kodos.

The Art of Compliance.

Is the word “compliance” frightfully out-dated? Or misunderstood? This month, “compliance” is the word under investigation over at diaTribe, with some crowd-sourced input from fellow people with diabetes, stemming from the Facebook question, “As people with diabetes, how does the word ‘compliance’ strike you? (Positively? Negatively? Apathetically?)”

“As with everything related to diabetes, your mileage may vary, and the concept of “compliance” is no exception. For me, it can feel like the end-all, be-all assessment of my diabetes, like an A1c result. But even if the word itself stirs up some negative feelings, it does serve to remind me that the to-do list of diabetes is never fully checked-off, and while there are plenty of reasons to feel good about my efforts, there is always something I can do to improve. The quest towards “better” remains constant, and I have to remind myself that a label doesn’t matter as much as my actions, and their outcomes.”

Check out the full article over at diaTribe, and if you want to weigh in with your opinion, I’d love to hear it.


What’s Your Itch?

My “diabetes advocacy itch” has always been emotional health.  I’m not a doctor and I don’t know everything about type 1 diabetes, but I do know that I pay more attention to my diabetes when my head is in a healthy space, and being tuned in to diabetes improves outcomes, for me.  Feeling stressed, overwhelmed, upset … any kind of intense emotion like that seeds itself in my management attempts and upsets the apple cart.  (Or, to be more accurate, the islet cart, which is already a precarious one.)

I can have the most up-to-date, tech-savvy glucose meter on my bedside table, but I still need to motivate myself to load the test strip, apply the blood drop, and make decisions on the result.  I can have access to the best medical team in the country, but I still need to follow through on the appointments that are scheduled.  All the diabetes management tools in the world are rendered useless if I don’t use them.

Which is why the psychosocial side of diabetes interests me so much, because I feel that mindset can be as important as access.

(I realize that it is a privilege to have access in the first place – see how it comes back to mindset?  During the Spare a Rose campaign, I was repeatedly reminded to appreciate the insulin sitting in my butter compartment, which made me want to move the Life for a Child mission forward even more.  :: scratch, scratch ::)

Since the start of my blog back in 2005, I’ve seen people in the DOC space tackle a host of issues, because it was their “itch.”  Some people make their focus the FDA, or research, or fundraising for different organizations.  Some people want to move the needle on access to care, or exercise, or peer-to-peer support. Some people want to connect with PWD in their town, or have a network to discuss emotional issues with.  Others want to tackle public perception, or offline outreach, or influencing policy.  Just like the variables of diabetes, the advocacy and connection possibilities are endless.

Lots of different “itches.”

Every single aim is important.  Every voice is important.  Every person touched by diabetes is important.

So I want to know what your “itch” is.  What fuels you?  What diabetes issues are important to you?  We’re a huge community with the ability to do a lot of good, and it starts with knowing what you want to see “scratched.”  Maybe by sharing, we can find kindred spirits and get scratching.

Excited About Exercise … Again?

I’m climbing up on a new bandwagon.

Oh hell yes I am, and I needed one.  Over the last few weeks, I’ve completely fallen off in terms of exercise.  I could blame the endless winter weather, or work, or the endless fuzzy hairballs that are Loopy and Siah, but the truth is, I just got lazy.  Laziness turned into apathy, and apathy turned into a bad habit of not exercising much at all.

Not cool, because my blood sugars/weight/emotions fare best when I’m active.  Sounds trite, but it’s true.

I’ve taken up with a new fitness tracker, and one that motivates me less because it’s tracking activity and more because it’s connecting me with some folks to engage in some friendly “account-a-tition” (accountability + competitiveness).  And that’s the theme of this month’s Animas column:

“… so now I had a way of tracking what I was doing, exercise-wise, and a group of people to help keep me accountable.  THIS was exactly the boost I needed to pull me out of the exercise doldrums.  Now, instead of relying on my sometimes-hard-to-find motivation, I could turn to the DOC to help motivate me.  The application, much like other fitness tracker applications, allows people to cheer one another on, and share daily workout stats.  Were my fellow PWDs logging nine, ten, … thirteen thousand steps per day?  Were they finding ways to eek out a little more exercise?  I was inspired to follow suit. “

Click over to Animas for a read, and since I needed to keep the type of tracker brand-agnostic for purposes of that column, I’ll say here that I’m using a FitBit, and if you’d like to connect, let’s do it!

YCDT: Encouraging Independence.

There’s an excellent, and inspiring, new You Can Do This video centered on parents helping their children with diabetes gain independence.

From the YCDT site:  “Independence in any aspect of a teen’s life can be a double-edged sword for parents – while parents want their children to be capable, that same capability is the gateway to their separation and evolution into adulthood. Independence can be a scary concept as it means children are ready to try their wings. Flying on their own means that sometimes they will fall and make mistakes, but most importantly it means that they are growing up.”

Check it out, and if you are ready to submit your own You Can Do This video, submission details are here.


All the Pieces.

We took a brief break at the Boston Museum of Science to marvel at the “Archimedean Excogitation,’’ an audiokinetic sculpture by George Rhoads.

Birdy stood and stared at it for ages, and I found myself doing the same.

The sculpture is 27 feet tall, made up of a xylophone, wind chimes, and so many chutes and pulleys and moving parts that whirred and influenced one another, sending billiard balls on a journey through the sculpture, rarely taking a predictable path and creating this cacophonous yet controlled chaos that made focusing on one part dizzying but watching it in motion made me respect all the work that went into crafting and maintaining it.

Diabetes management metaphor, anyone?



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