Monday, October 31, 2011

Halloween D-Fun

Our annual JDRF Walk happened Saturday morning in downtown Indianapolis and we had a great time. Both Suzi and I walked, along with the Riley dog who's been excited to participate in past walks.

This was the latest it's been scheduled, and given the timing so close to Halloween the theme was "Say Boo To Diabetes." So, we had some fun and dressed the Riley Dog up in a D-themed costume.

She became an insulin pump. A "Puptronic 2011" pump, to be exact. All with a little homemade artistic magic by Suzi, using stick-on felt designs on a University of Michigan doggy coat.

The Manufacturing Process
Manufactured by @TypeSuzi

Excited to be an insulin pump!

Showing off her costume at the Walk!

Relaxing, just before the walk begins!

Posing with dad and the Animas pump guys.

Happy Dog, smiling for a photo!

And so that was our weekend walk. We had a blast, along with about 3,000 others.

Now, we're ready for Halloween.

As I've written in years' past, I have never felt that Halloween is about the candy. It's everything else. More important than the candy, I recall the fun times of the holiday. The costumes. Being with friends. The pre-season pumpkin carving, party-going, hayrides, and haunted houses. That was more exciting and memorable. We have the great movies: Garfield's Halloween Adventure, It's The Great Pumpkin, Charlie Brown; Night of the Living Dead and Return of the Living Dead. Of course, we have to have the candy bowl stocked and ready to go near the doorway.

However everyone else is planning to spend Halloween, hope it's a great one filled with some fun!

Happy Halloween!!!

Monday, October 24, 2011

The Message Behind Blue

I plan on wearing blue on Fridays in November because it’s Diabetes Awareness Month.

The plan also extends to World Diabetes Day on Nov. 14.

Did so last year, and will continue that practice in 2011 and beyond.

Without a doubt.

Just like so many others in the ever-expanding Diabetes Online Community. As evidenced by this Facebook page and video created by Cherise.

Thanks, Mom! (@jath622)
But I’m not just planning to wrap myself in blue clothing, put blue attire on my dog, and watch for monuments and fellow diabetes advocates to “Go Blue.”

No, the plan is for more than that.

I want people to know WHY we are wearing blue. By people, I don't mean my fellow Knights of The Diabetes Jedi Order. I mean regular folk.

Simply, most people don’t know that someone wearing blue on a particular day, or even on a regular basis for a month, is doing it for any specific reason. They don’t get blue is the color representing diabetes. Heck, even the Diabetes Community itself can’t agree on a universal color (like breast cancer has with pink).

That has been my frustration before. Last year, I wrote a blog about how frustated it made me when the monument in downtown Indianapolis was lit up in blue on the Sunday of World Diabetes Day but how NO ONE grasped it was for diabetes. Rather, everyone thought it was in honor of the Indianapolis Colts who also don the color blue. There was no other signage or designation showing why it was lit up in blue, and so the potential for a great D-Awareness message was essentially lost.

Same thing happened on days when I wore a blue shirt, but managed to walk out the door without my little blue lapel pin. No one assumed I was wearing blue for a reason, and it's not like you're just going to run around town or your office declaring, "I'm wearing blue because November is the month of Diabetes Awareness and this is our color!!!" Most of the time, I remembered to wear my little Blue Circle of Advocacy on my shirt and that sparked some advocacy moments. The blue pin and wrist Act NOW bracelet actually spark questions, and allows for some real life advocacy moments where you can educate people who aren't familiar with this diabetes cause.

So, that's what I am planning again.

I'm hopeful that my local JDRF and ADA chapters will embrace both the blue color use and overall D-Awareness efforts, as well as my D-Camp organization and the local businesses in town such as Eli Lilly and Roche Diagnostics. Coordination is a key, and despite some efforts in the past number of months to make this happen, it's yet to fully come to fruition. Which I'm somewhat bummed about. I'm also not happy that I've been unable to receive any response from the City of Indianapolis to my inquiries about what more can be done to add context to the Blue Lighting of the Soldiers & Sailors Monument. We'll see what happens on these various fronts.

While I love the fact that so many in our community are embracing the color blue, and the message is so vibrantly "Wear Blue!," I do not want the message to get lost because we're preaching to the choir, that we're not simplifying this effort to those in the general non-D-world.

Maybe I live and work in a place where people don't go around asking why you're wearing blue, randomly. It's just not that special of a happening, in my world. So I don't want the message to be lost and will be doing what I can to make sure it's not.

What is that message? According to the IDF:

Love this Blue Circle frame!
"The significance of the blue symbol is overwhelmingly positive. Across cultures, the circle symbolizes life and health. The color blue reflects the sky that unites all nations. The blue circle signifies the unity of the global diabetes community in response to the diabetes pandemic."

As a color, blue also has specific meaning for those of us in the Diabetes Community - back before the home blood meter days when urine testing was the only way to determine where a PWD's BG was at, the color blue suggested normal blood sugar because the urine was free of glucose. This isn't to say anyone actually remember this and used it in the rationale for choosing blue.. but historically, it makes perfect sense for blue to be our color.

So there it is. Blue, it is. I'm ready for that message go global and more mainstream public.

Monday, October 17, 2011

An Awesome Community

Don’t ever doubt that you make a difference.

One person, telling his or her story, is all it takes. That person can reach someone else when they might need it most. And change a life, in small or big ways.

That’s what Simon says the DOC has done for him.

That’s what the DOC has done for me.

And so many others echo that same sentiment, from online blogs and Twitter-chats to real life meetups in random settings. From 1-on-1 get togethers to large-scale “events” with groups of PWD.

You look around the roster of people who gathered from more than a dozen states, all in the name of one individual from Australia who seems to embody the spirit of this community so well. A friend, life-changer, and awesome person.

Most of us had a great time, and the words are just starting to trickle out of our hearts even as the thoughts and feelings are still being processed in our heads. Not everyone could be there live in person, but many could follow along online thanks to the technological wonders we have today and, more to the point, everyone in our community was there in spirit. This organic meeting of friends is something to write home about. It's worth recognizing, because it shows the power we have in each other's lives and what we are willing to do in order to see those who mean so much to us. Those in our own lives who've made such a difference.

For me, a 1,022-mile drive between Indy and Kansas City was the chance of a lifetime and well worth it.

Just being around these people is amazing, inspiring, supportive, motivating, happy-inducing.

Simply: AWESOME.

And that’s all there is to it.

Others have said written it so much better than I can, so if you haven't had the pleasure yet, please drop on by and read their thoughts on the multi-state experience that was #simonpalooza.



Scott Strange





Others on the NYC arm, including Karen, Kerri and Briley

And of course, this incredible video:
You Make a Difference

Tuesday, October 11, 2011

Setting The Stage

All I can say is WOW.

A weekend in Kansas City with a group of about 30 friends was beyond words, and so far I don't have the energy or ability to express the awesomeness of it in writing.

But, to start, i thought we could set the stage with some great photos:

There was Diet Coke...

Oh yes, there was.

'I'm NOT addicted to Diet Coke. I can quit anytime I want.' - says, with 3 cans on table.

How'd YOU react seeing this after deboarding a plane???
Stunned or Scared?... :))
Then, there was the Airport Group Greeting:

<-------- US

SIMON!! ----->

Simon, overwhelmed to the point of needing to sit down.

The #Simonpalooza KC Leg's Airport Welcoming Group - Photo provided by Sara's Camera

After fun, food, more fun, and even more fun, we heard the rumors of Blunt Lancet actually be spotted on their tour!!!!

Jeff Mather, Kelly Rawlings, Kim Vlasnik, & Mr. Simonpalooza.

Before dinner on Saturday night in Kansas City, we even stumbled upon a a four-man quartet who decided to audition for the #simonpalooza tour!

They were impressed by the band name, Blunt Lancet...

The #simonpalooza KC Tour even had its own mascot for the weekend – BELLA!!

Becca on alert for Lows, with Heather.

It was truly a great time!

Most noteworthy, community and friendship were on display for everyone to see, in person or via the online universe, and it was simply spectacular.

More will be posted down the road, as I’m able to process everything and find the time and energy to get it into words. Hopefully, this sets the stage.

In the meantime, you can find great recaps in other places from those who were there. An essential starting point is Moments of Wonderful where Sara created an amazing video with a now-household D-Message: You Can Do This. You can find that here:

Friday, October 7, 2011

Another Day of Gremlins

So, here we are again.

The day we write about anything EXCEPT that chronic condition that we are living with. No D Day, some might know it as. An annual tradition that's the brainchild of our own bacon-loving Ninjabetic. This means no blogging, Tweeting, or Facebooking statuses on that subject.

George describes it this way: "We are more than a disease, a lot more and tomorrow is a day to share some of that. There are many facets to each one of us and since we do talk so much about our D lives, we maybe miss some other cool stuff about each other. It’s not easy. It is a serious exercise to avoid all D talk but, I think it is a positive step in seeing that life is more than diabetes. We are more than diabetics or People With Diabetes. We give diabetes a lot of attention, let’s spend one day and give the rest of ourselves the spot light." 

Many articulate No D Day posts can be found here.

But for me, it's a replay from the Corner Booth back in 2010, apparently.

Just like last year, I'd neglected to mark this on any calendar and didn't even remember it until earlier in the week, and I had little time to get my sass in line for a specific Non-D post. My mind rolls through ideas, trynig to find the best one: Pull one from the past? Write about journalism, or the future of newspapers? Politics? My Faith? Our homestate of Michigan? An Ode to Diet Coke? That Crazy Shadow Cat or Riley Dog? My Hoskins Family Genealogy Project that traces my roots back to Bartholomew Hoskins who came to America back in 1615...?

So many topics, but I couldn't settle on one as the time rolled toward the deadline.

This exercise began at 12 a.m., and as the midnight hour rolled around some questions began surfacing about how this all would practically play out: Is there a specific hash tag to use? Can we mention "diabetes" in our posts without actually writing about it? How much can we delve into this concept without crossing some line of actually delving into the topic we're meant to avoid? Oh, the mind games. And then there's those pesky time zones, which meant some of us in the Eastern and Middle parts of the country would hit the "No D-Day" roadblock before those to the West...

I began to feel like a Gremlin.

Instead of not being able to feed the cute little Mogwai after midnight, I wasn't able to post or write about my health. I thought about the food-stuck-in-the-teeth issue from the movie, and wondered what happened if I wrote something before 12a, but it got lost in cyberspace and then actually went online after the deadline. Pondering these issues and still struggling to pinpoint a particular post topic, I even managed to spill a glass of water on myself.

Luckily, there were no adverse effects as was the case with Gizmo and the Gremlins.

Up late, I wished I had thought about this earlier rather than dealing with it at such a late hour. With work deadlines hanging over my head, I staying up to write stories and the pressure was weighing down on me. At that point, it became painfully obvious that I was in need of a Flying DeLorean with a Flux Capacitor, to rewind time and got back to an earlier point in the week.

But, alas, here we are. Last year, when there were Gremlins In My House, I settled on Movie Quotes as my blog topic. This year, out of desperation, I'm turning to those handy-dandy bullet points for some quick, scattered bloggy thoughts:
  • Coffee, have lots of it. Sleep, need more. Stress, cut it out please. Oh, laughter makes it all seem better.
  •  Words: My life is about writing, journalism. And at a twice-a-month newspaper, doing some freelance writing, blogging here, and doing countless emails and comments and Tweets each day.... my mind kinda melts when I think of how many words I must create each week. Sometimes, I just want to stop writing and not craft letters together.
  • But one combination of words that made me smile -> "cartoon ninja throwing spammers." That was a search time for my blog recently, and it made me grin. While I'm assuming this searcher meant to search for "spanners" or those ninja-hand tools, I couldn't help but picture it the way it was written. And yes, I do often want to throw email and tweet-feed spammers around... and having a ninja do it would be golden.
  • #simonpalooza. Two continents. Three states. An awesome Australian and many many friends. What more can one say??? Yes, I am traveling TODAY to Kansas City to meet with Simon, who is traveling to the U.S. for the first time ever. There's about two dozen of us in the Midwest, traveling from that area and surrounding states, and the epic adventures are guaranteed. Some tweeting is expected, so watch for common hashtags: #simonpalooza #BluntLancet #imintheband ... craziness will ensue. Follow some of us, including the star @STroyCrow over on Twitter. Blogging updates will be following before long, too.

Sadly, our last Tigers game back in 2009
  • Detroit: GO TIGERS!!! You knocked off those NY Yankees in the single-elimination Game 5 on Thursday evening, and now you advance to the American League Championship Series (ALCS). And of course, that first game is on Saturday... while above-mentioned #simonpalooza is ongoing. I'm a proud Detroit import, and am wearing the D logo with pride. Here's to hopefully getting to the World Series for the first time since 2006!
  • I love my wife, and while I'm very excited to be getting away for a weekend from real-life to hang with some great friends, I am sad to be away from her. She is one of my heroes, and I don't tell her that enough. Except on special occasions such as our anniversary, the sixth we celebrated back on Sept. 24. Miss you, but see you soon!
Who's that? Dean Martin and a Barelli sister...?
  • All of this talk about Detroit, hanging with my wife, and relaxing to watch some good TV made me reflect back on the recent three-part PBS series Prohibition... which we watched with interest and absolutely enjoyed. See, we grew up in Southeast Michigan in the suburbs not far from Detroit - our roots are there. I love history in general, and topics such as The Purple Gang from that era fascinate me. In fact, this all took us back to our days in the D and even a Halloween gathering about a decade ago where we donned our 1920s attire - we were straight out of the Prohibition era! Since it's now October and Halloween is quickly approaching, this seems like a good time to toss out into the public realm some photo evidence. See, there I am, a muckraking newspaperman with flask in hand with my lovely flapper by my side! And yes... I still own that hat.
Um, I think that's it. And my clock is after midnight... and all appears OK. Just gotta go downstairs and make sure there's no Gremlins hiding out in the kitchen.

So that's that.
Happy Weekend, my friends. See you on the flipside of KC!

Wednesday, October 5, 2011

The ‘Other’ Side of Community

A simple message came across my Twitter-feed, in response to one I’d sent about an article regarding the idea of the Diabetes Online Community.

The individual on the other end of that Tweet was the article’s author, a respected pediatric endocrinologist who’s been Living With Type 1 diabetes for more than four decades and has been described as a luminary in the field of D-Management.

His message about the online D-Community: “Caveat Emptor!”

Or: “Let the buyer beware, when engaging in this potentially-dangerous online health community that might be trying to give medical advice or sell a product to those with diabetes. Online flash mobs are a risk, and they can certainly be a danger in the diabetes community as well.”

The Tweet that got me to the column/letter/article in a Texas newspaper in the first place: “With Diabetes Social Media sites there is potential for much good but also the potential for 'bad.' See if you agree:" Article link was here.

Clicking on the article, I saw a headline: “Be wary of diabetic-related social media sites.”

So I read. And some passages screamed out at me:

Social media sites for diabetes are enticing. People frustrated by brief contact with their doctor and not getting their calls returned or questions answered in a timely fashion will logically turn elsewhere for help. Getting a quick online response from a person you think has gone through what you are experiencing is very seductive.

The power to share common experiences is an overwhelming force. The dark side of social media in diabetes is its equally powerful potential to disseminate myth and misinformation. Health care professionals are involved with many sites, even if only as casual observers and not active content contributors. But even this is not meant to be a replacement for the attention provided by a health care professional who knows your medical history.

Social media applied to diabetes best fulfills the adage "double-edged sword."To quote another ancient wisdom: "caveat emptor": let the buyer beware.

Ok. First of all, I totally get that privacy is a concern when we’re talking about sharing anything online. Especially in the health care context, when medical decision-making and lives are on the line. That “be careful” message isn’t off base, at all - it's imperative. Not to mention in these days of widespread identity theft. But these warnings must be given in the correct context. While this uncertainty and hesitation certainly might be true on its face, and I wholeheartedly agree that people SHOULD be careful when it comes to online writing about health or otherwise, what bothered me about this article was that NOWHERE did it mention the D-Community that I’ve come to know and embrace in recent years.

Nowhere did it talk about a place where real stories are shared. A place of support. Friendship. Fun. Advocacy. Important context about the health care industry and regulatory environments. Yes, information and education and learning and adapting is a part of that… but that’s not really the “focus” – it’s about the people and connections, as a community. We are honest people sharing our experiences, not people out to make a buck or sell some snake oil (even though I understand these issues do exist online and do find their way into this community).

It makes me wonder: Has this person EVER ventured into this community? To an online site such as TuDiabetes or DiabetesDaily? Engaged in the blogosphere or #dsma discussions on Twitter? Has he ever experienced the support and community that our members share in, the sense of being part of something so “life-changing” and bigger than ourselves that it’s tough to even describe?

Certainly didn’t seem like it, from my reading of this article.

Seems like it may just be observations from a distance, general warnings localized for the diabetes readership, touching on this from the outside looking in.

And that’s a shame. Because the "good' of the online community needs to be better represented to those who might not be aware of what's out here. The article seemed to tell only half the story, glossing over the other side without even trying to balance out the overall point of what’s being written.

For me, it wasn't about answering a specific question about my diabetes; it was about offering a way to address the unspoken, oft-unrealized feeling of isolation that comes with a chronic condition. The sense that you're being taught the textbook management and living guidelines, but not how to actually live with it. When I stumbled across the DOC and began seeing it expand, it addressed that feeling that I’m not alone, that I can lean on friends when I’m feeling burnt out or down about my D-Life, and that being open and talking about my diabetes is an important part of coping that helps keep me accountable.

None of us proclaim to be doctors or experts, or “doctor replacements.” Most, if not all, of us have visible statements posted declaring this. There’s a simple mantra our community lives by: Your Diabetes May Vary. What works for you, may not work for me. We offer support and tell our stories. We do our best not to judge our fellow DOCers, unless someone specifically requests that or the situation warrants it.

All of the “dangers” that exist in this 21st century model of interacting are very important, but you can’t ignore the other part of the story. The side to what good this does present to those who are open to it. I think it’s important to make sure that other side of the story is known so that people can see the life-changing positives the Diabetes Online Community offers.

Maybe this is what some in the medical profession see the community as - a place where dangerous medical advice and information is being doled out to the detriment of their patients. Maybe the risks don't outweigh the potential good, and so it's better to warn PWD about and not talk up the community online? I don't know. For me personally, the benefits far outweigh whatever vague, general risks might exist in a network of strangers.

I have no doubt there are "bad" apples and that caution is important. But we can't live our lives in fear of what could happen - because then we'll never experience any of those moments of wonderful that might be so close, so life-changing. That is something worth recognizing.