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Posts from the ‘Diabetes Online Community’ Category

The Friday Six: Hope Conference, No Scrubs, and Grocery Store Lows.

Lots on tap this morning:

While there is no known cure for diabetes, that doesn’t mean the diagnosis is hopeless.  Check out the 2nd Diabetes Hope Conference and register for your free ticket!

A guest post from Hope Warshaw about asking Congress to Access to Quality Diabetes Education on the Strip Safely website.

Grocery store lows are the worst.

These stick people always say shit that resonates.

“These results are very impressive,” said Dr. K. M. Venkat Narayan, professor of medicine and epidemiology at Emory University, who specializes in diabetes and was not involved in the study. “There is strong evidence that we’re implementing better care for patients with diabetes. Awareness has increased tremendously, and there’s been a great deal of emphasis on coordinated care in health care settings.”  tl;dr:  We are worth it.

Children with Diabetes is bringing a conference to Disneyland!!

The Joslin blog is chatting about issues with dressing and your insulin pump. (Not with googly eyes, though it’s been done.)

Scott Johnson is tackling his first 1/2 marathon, and could use our support.

“So next time you see someone who looks a certain way or has a certain disease, I challenge you look at WHO you see, instead of what.”  Beautiful post from Rosie at The Fat Side of the Tracks.

Examining advocacy, and a follow up from Elizabeth about her own journey with diabetes and financial struggles.

No scrubs.

I could look at this all day:

“One year, 26.2 miles … how hard can it be?”  Mr. Mike Lawson is going to find out, and I love how he’s chronicling his journey.

Only 22 days left to bring Timesulin to the U.S.  I hope this effort gets funded!!!

The yin and yang of diabetes.

The #DSMA blog carnival this month is a timely one for me:  What are some of the things we can do to prevent social media burnout?

Happy weekending!  We’re having a Batman birthday party for our newly-minted four year old, and if it doesn’t rain, it will be awesome.  :)   Have a good one!

Recapping #dayofdiabetes.

My documented day of diabetes wasn’t an all-star showing.  I didn’t hit one out of the park, but it wasn’t a complete shut-out, either.  I’m no bush-league player, so I knew how to handle the things that kept coming out of left field, even when a diabetes triple-play was in effect (morning highs! then a few lows! then a pump site change at midnight!)  But there’s no cure on deck, so I keep swinging for the fences and taking it one base at a time.

The day started with a higher blood sugar than usual, which I found frustrating because overnight numbers are usually my stable-zone (of course there are outliers, but my A1C stays stable largely in part to having overnights reasonably nailed).  Kicking off the day with a little grumpiness isn’t my style, but that’s how it started yesterday:

Sometimes my blood sugars don’t respond quickly to insulin, and I have to kick start things with a little exercise.  Self-employment affords me a flexible schedule, which I’m very grateful for, letting me jump on the ellipmachine for a few minutes to help move the correction bolus into action.

But after the initial morning high, blood sugars were oddly low yesterday.  I spent more time than usual chomping on glucose tabs.

Low blood sugars didn’t just jack up my day.  They cramped my parenting style, too, as I waited for the glucose to hit my system and reboot my brain.

Work still needed to be done, though, so I found myself prepping for conference calls in an unusual way yesterday:

Family dinner was punctuated by the soundtrack of diabetes.

My bedtime routine was ambushed by the need for an insulin pump site change (which I despise doing before bed, due to the ambiguity of the pump site working properly, having a post-site change high blood sugar, [insert other variables here]).

But overall, the technology I use to keep track of my diabetes protects me more than it inconveniences me, and I’m grateful.

And then the day was done. Over! Today is another day. As is tomorrow.

“It’s like deja vu all over again!”

Another #dayofdiabetes.

Every day (at least for me, since 1986) has been a day of diabetes, but now there’s a hashtag to go with it, so I guess that’s cool?  (Yes, yes it is.)

Today, I’m documenting what a day in the life of this type 1 diabetic is like, one Tweet at a time.  If you’re on Twitter, you can follow the #dayofdiabetes hashtag to see a dozen different day-long perspectives on what life with diabetes includes.  And if you’d like to join in, you don’t have to limit yourself to Twitter.  Log your day on Facebook, in a blog post, on Instagram, or whatever online sharing model moves you.  Track using the #dayofdiabetes hashtag, and join the conversation!

 

If I Knew Then: Diabetes Blogging.

I wish I had known, at the outset, what a “blog” was.  When Chris suggested I start one back in 2005, the face I made was as though he had shoved a lemon into my mouth.  “A blaaaaahgg?”

I wish I had known that things like SEO would matter – not on the “I need more page views” sort of nonsense, but in terms of being found by the people I was hoping to connect with.  I started blogging in search of others who understood what diabetes in real life was like, and in starting that journey, I picked a blog title that took poetic license into account more so than SEO.  (I guess I should have included ‘diabetes’ in the title, but where’s the fun in that?)

I wish I had known how privacy concerns would change over the course of a decade. When I first started writing about diabetes, I wanted other people to find me, and I was happy to have my real name attached to my writing.  (I also didn’t know any better.)  Openly disclosing my diabetes was an asset in my pursuit of diabetes-related employment (leading directly to my job at dLife) and I was fine with being Googled.  But over time, and with the realization of how pervasive the Internet is, I wanted a less-is-more approach for certain topics.  Not everything needs to be shared, in particular moments where my family is concerned.  We have made certain decisions, as a family, but it doesn’t mean they are the right choice for everyone.  There is no “right choice,” – just varying perspectives and levels of comfort.

I wish I had known how much I needed to connect with peers who have diabetes.  I don’t know what it’s like for every person diagnosed with type 1 as a kid, but for me, there was this long period between diabetes camp and finding the DOC where I felt isolated and alone with diabetes.  I didn’t realize the missing link between “pursuing” and “achieving” my health-related goals was peer-to-peer support.  Having access to a community doesn’t make me like diabetes, but it does make diabetes feel less like something I’m inclined to hate.

I wish I had known there would be trolls.  And that they don’t matter.

I wish I had known how my writing would affect the people closest to me.  When I write about a low blood sugar that scared the hell out of me, I forget that my mother and father also read about that same low blood sugar, and it still scares the hell out of them.  My diabetes, though existing in my physical body, reaches out into my family and might scare them at times, too.

(To that same end, I wish I had known my mother didn’t know that I could pre-write posts and schedule them to go live at any given time.  For a while, my mom thought a new blog post in the morning meant I was awake and fine.  I hated taking that security away from her.)

I wish I had known there would be growing pains as the community expanded and grew in numbers, scope, and passion.  When the DOC was small, it was easy to know all the folks involved and for people to support one another.  Now, there are hundreds and hundreds of amazing voices and perspectives, and keeping up is damn near impossible.  Even the best feed reader and the strongest coffee can’t get me through everyone’s new updates, so I read as many as I can instead of reading as many as there are.  Sometimes I don’t agree with everything I read, but isn’t that the point?  For the community to expand my mind and my perspectives?  For the DOC to be the red pill?

I wish I had known that the community would be bigger than one state, or one country, or even one continent.  I wish I had known that I would find kindred spirits in London and Melbourne and Burlington.  I wish I had known that these people were there the whole time, living with diabetes just like I was, and that I wasn’t nearly as alone as I felt at times.

I wish I had known there would be a lot of people asking “How do I get involved?” Because then I’d be prepared to tell them that involvement requires participation.  You want to get involved with the diabetes community, online or off?  You need to put yourself out there, even just a little bit, and make yourself available.  Volunteer at local JDRF or ADA events.  If support groups don’t exist, start one.  If you want to become more connected online, go to where many people are connecting (try #dsma tonight, even!).  Start your own website.  There are many avenues for diabetes advocacy, and the need for your voice is critical.

But what I did know is that every voice matters.  And every voice has always mattered.  This community is huge and continues to grow because it needs to, and because there isn’t someone who tells the story of all of us.  We tell our own stories, and the power is found in the collective itself.  One diabetes blog or website or newsletter doesn’t define this community (there is no “blog of Sauron”… wait a second …), so share your story – please!  Raise your voice.  And maybe the difference we make can be felt in more that just our own lives.

 

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.

 

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