Friends For Life: The Outtakes.

I think this is my last FFL post. Really. I'll shut up about it now.

Along with the bonding, learning, and misty eyes, we also had a lot of laughter. A lot of silly. A lot of video that we couldn't really use.

Unless you make a blooper reel, that is.

On The Road Again.

This coming Sunday through Tuesday, the folks at Roche are holding their fourth annual Social Media Summit - a gathering of diabetes advocates (30, or so?) who are invited to Roche's home base in Indianapolis for a couple days of discussion, feedback, brainstorming, and other whatnot. I say "other whatnot", because I've never been invited to one before, so I therefore don't have any first-hand knowledge of what goes on.... yet...

I'm honored to say that this year I was invited to attend, and so I'll be hopping on a plane Sunday morning to go talk diabetes for 48 hours. I've seen the list of folks going, and I'm excited about who will be there and the discussions we'll have!

As with summits like the ones Medtronic and Lilly put on earlier this year, Roche will be paying for my travel, hotel, and food expenses while I'm there for the summit. As a heads up, the AADE annual meeting thing (also in Indianapolis) begins the day after the Roche event concludes, so you may see that some DOC folks will be there for a whole week. All of this advocacy has really drained my vacation days at work, so unfortunately I won't be staying in town for that. (I should also point out that going to AADE is not part of the Roche summit experience [or what Roche is covering the expenses for] - it just happens that they're back-to-back in the same city.)

If there is something you'd like brought up to the folks at Roche while we're there, please leave your thoughts in the comments, and I'll do my best to make sure it's addressed!

P.S. If you're on Twitter and want to follow along, the hashtag for the summit is #dsummit12.

You're Beautiful.

Yesterday, my friend Wendy shared something about her young daughter on Facebook.

And from yesterday until a few minutes ago, Sara, Jess, and I aggregated some of those affirmations... and now we're sharing them.

I WEAR GLASSES AND A PUMP AND MY FACE
ONLY GETS STUCK LIKE THIS SOMETIMES

For Wendy's daughter (who was - coincidentally? - diagnosed seven years ago TODAY), and anyone else who has to wear a lot of hardware: you can do this, and you can ROCK IT.

Where's Waldo?

...if Waldo were a test strip, that is.

This particular cosmetic bag meter case makes great test strip camouflage, don't you think?

Friends For Life: Jerry The Bear.

Several times during my stay at the Marriott World Center for Friends For Life I walked down a hallway that was lined with hi-top tables and chairs. For three days in a row, one particular table was commandeered by a swarm of laptops, cables, teddy bears, and a few 20-somethings working quite feverishly on... something. Their fingers fervently tapped at keyboards; their gaze barely lifted from their arsenal of... well, I wasn't quite sure what it was, but it seemed intense.

When the exhibit hall finally opened on Friday, my question was answered: it was Jerry the Bear (whom I keep wanting to call "Jerry the Beary"). And when I saw that the booth attendant was shamelessly sporting a bear costume? Sold.

As it turns out, that wasn't just a booth attendant: it was none other than Hannah Chung, co-founder of Design for America and Sproutel, the company that makes Jerry the Bear (which she invented alongside Aaron Horowitz - who has mad dance skills, apparently). She was kind enough to talk to me a bit more over email and Skype post-conference about this little furry guy they're working on.

"The inspiration for Jerry the Bear came from two places: a personal attachment to diabetes (type 2 diabetes can be found in many branches of Hannah's family tree; most closely with her father who was diagnosed at the age of 40), and a passion for designing interactive products for people living with chronic illnesses". (It's also worth noting that Jerry the Bear was originally conceived as part of the 2009 Diabetes Mine Design Challenge!)

So what is Jerry the Bear? He's an interactive teddy bear that allows kids to become the caretaker for someone (or some bear?) with type 1 diabetes - kids can "feed" Jerry with fabric discs that symbolize specific foods (and hear him say "nom nom nom" as he eats them - SO CUTE), check his paw for a blood sugar reading, and "inject" him with insulin, via a special pen, on one of his designated sites. Not only that, but Jerry is programmed to physically respond to these actions in a manner similar to how the human body would - give him food, his "blood sugar" goes up. Give him insulin; it goes down.

He's intended for young children as a teaching tool to help them adjust to their new lifestyle with type 1 diabetes - not just the physical things like shots and carb counts, and the self-awareness and diligence it takes. The stuffed animal format seems a good choice to me - teddy bears are an approachable and familiar concept for children.

Well, actually, even for adults.

And then the bear was all, "Heeeeeeeey"

It's this knowledge that led Hannah and Aaron to develop Jerry as a teddy bear, specifically. Kids carry around teddy bears anyway, and there was a need for something both educational AND interactive to help children adjust to life with type 1 - why not combine the two? The testing they've done so far (some of which took place at FFL) has produced very positive feedback: "We know that learning happens very rapidly in small children, and we're finding out that young kids have a longer engagement period (minutes vs. seconds) when there is an adult involved in playing with the bear, too. Parental involvement plays a huge role in having a great experience with Jerry."

So, those intense three days of table-hoarding... as it turns out, the Sproutel team received so much feedback at FFL that they could see immediate improvements to make to their product, which prompted a "hack-a-thon". During those three days of programming, they ended up increasing Jerry's code capacity by a third. (Whoa.)

They're still in the testing phase, but it sounds as though Jerry the Bear is scheduled to launch sometime in the middle of 2013. (Which seems like FOREVER to wait, right?) If you'd like pre-order a Jerry the Bear, head over to their website: www.jerrythebear.com. Want more info? Give them a jingle at info@jerrythebear.com. You can also check out the Jerry the Bear Facebook page and Twitter feed.

So how do I feel about this new way to help kids feel "okay" about this whole diabetes thing? You could say I'm bear-y excited.

::rimshot::

Grocery Store Lows.

Wish You Were There.

For those who wanted to attend, but couldn't.

For those who did attend, and want to relive a bit of it.

For those who have no idea what all of these acronyms (CWD, FFL, YCDT, OMG) are about.

Thank you.



P.S. I set up a seperate Twitter account this morning, too - go follow @YCDTProject!

Talking With Tony.

Tony Rose was kind enough to invite me on his podcast this week, and in case you'd like to hear me babble on about about things like diabetes camps, celebrating diaversaries, feeling angry about diabetes, Friends For Life and the You Can Do This Project (because I obviously haven't talked about those last two things enough), I have a link for you: http://bloggingdiabetes.com/2012/07/bdp-049-interview-with-kim-vlasnik-cgm-data-and-diabetes-news/

I also mention fanny packs. You've been warned.

Wordless Wednesday: Great Success.

"Worse".

Definition of "worse":

comparative of bad or of ill

 

1: of more inferior quality, value, or condition

2a : more unfavorable, difficult, unpleasant, or painful

  b : more faulty, unsuitable, or incorrect

  c : less skillful or efficient

3: bad, evil, or corrupt in a greater degree : more reprehensible

4: being in poorer health : sicker

 

* * * * *

 

If this would have happened years ago, I might have agreed with her. I might have said, "Yes, it is. It's so much worse." I would have said that because I was naive.

 

I have this friend at work; we've known each other for four years now. She knows I have type 1 diabetes, and though I've tried to explain the gist of what that means (and why it's different than "the diabetes two" that her uncle has), I can always feel that she's still not quite certain. She tries, though - she does. She understands when I have to turn down the offer of going for a smoothie mid-afternoon, or when I decide to stay at my desk instead of going for a quick walk. She's aware that I wear a pump and a CGM. She knows about my second life as a diabetes advocate, and where I'm going when I take a few days off of work. (My work situation is weird. Even my boss didn't know I went to Florida two weeks ago, but that's mostly because he didn't ask.)

 

There have been a few times where she's caught me off-guard, because it turns out she was actually listening as I babbled on about All Things Diabetes. Then again, she sometimes jumbles up the logic, too. It's a mixed bag.

 

Earlier this week, she told me that she had been talking with - well, I actually can't remember now. With someone who had people with diabetes in their family. "You know what they told me, and I was going to ask you about?", she said. "They told me that diabetes one (I've tried to correct her phrasing here many times, to no avail) is a lot worse than two. Is that right?"

 

Years ago, when I had so little knowledge of what type 2 diabetes actually was (and I'm still very much learning, btw), I can assure you I would have agreed with her. I would have agreed because like so many other people who don't take the time to learn about something before they form an opinion about it, I had assumptions: that type 2 only happened to overweight people; that type 2 was something to be blamed for developing; that those people "had a choice", where I had not.

 

In short, I was an idiot.

 

The diabetes online community, and the storytellers within it who share their lives with type 2 diabetes, have helped me understand the other 95%. It's not a matter or better or worse - it's just different. One is metabolic; one is autoimmune. One has a rapid onset; one creeps up on you like a cruel fog. Type 2 can appear in young, healthy, athletic adults and children - and it isn't always someone's fault.

 

As much as the two types may be different, they are also so much the same. No matter your "type", the list of possible complications read the same. We all require lifestyle changes after diagnosis. We all have to check our blood sugars. We all deal with the emotional impact of our diseases; the sterotypes; the marathon of self-care.

 

When you look at the true definition of "worse", it's not as easy to attribute that word to one side or the other. No type of diabetes is "the good kind". I continue to learn that diabetes, in any form, is a hard-fought battle with odds that are rarely in one's favor. No one asks for this.

 

When my friend asked me that question, I had to pause for a second.

 

"No, not really. They're both worse."

 

 

 

Friends For Life: Trialing The Tandem t:slim.

It's been said by someone much more clever than I that Friends For Life is like Comic-Con for diabetes. (I've never been to Comic-Con, but from what I can gather, it seems to be a fair comparison.) For at least five days out of your year, you can feel "normal": everyone checks their blood sugar; you can both fist bump and pump bump your friends; the whole diabetes experience (and all that goes with it) becomes typical, instead of unique. 

Part of what is also rad about Diabetes-Con Friends For Life is the exhibit hall area, and how many vendors are there with answers, free samples, and an ability to try things out before you have to make a commitment. This year, Tandem Diabetes had a large presence in the hall (and an atmosphere that felt decidedly less "medical device" and more upscale retail space) and offered attendees the ability to trial their new touchscreen t:slim pump for a 24-hour period during the conference, provided you called in ahead of time to reserve a spot.

I figured this was as good a time as any to give this gizmo a go. After an hour-long orientation/Q&A/me not being able to keep up with the rapid pace on Tuesday afternoon, I had a t:slim to play around with.

These + Dexcom receiver = SO MUCH HARDWARE.

A better side-by-side comparison.

I definitely didn't learn everything there is to know about owning, using, or otherwise experiencing a t:slim in that 24 hours: the pump was never actually connected to me, nor did I get to do a set/cartridge change or charge the battery. That said, I did get to scroll through whatever menus I wanted, set basal and insulin to carb ratios, administer "boluses" (I think the thing was just filled with water), stop and start insulin delivery, and test-run all sorts of other features.

Long story short? I like it. I like it a whole bunch. Once you get a hang of where everything is, you realize just how intuitively and intelligently it's laid out. I like that it can hold 300u versus the 200u my Ping can manage. I like that it has a safety mechanism that, should something go terribly, horribly wrong, prevents the pump from accidentally administering a large dose of unwanted insulin. (The most it could give "by accident" is .3u.) The top of the pump doesn't have that screw-on cap, and instead has tubing coming directly out of the pump - which then has a connector further down the line. (You know how sometimes if you're wearing a pump on your waistband and then sit down, that cap kind of digs into your side/stomach? This eliminates that.) Thoughtful!

The one issue I did have was with the touch screen - maybe it was just my fingers, or the Florida heat, or who knows what... but there were a few times where I had to touch the screen three to five times before it would register the contact. I mean, it eventually recognized my action, but it wasn't as responsive as I would have liked. And if that only happens every once in a while? Maybe that's a manageable amount of "ugh".

I'm not due for a new pump until the end of next year, and who knows what will come through the FDA by then to change my mind... but for now, the t:slim has me impressed.

Disclosure: There's actually no need for a disclosure. At no point in talking with the Tandem folks did I mention that I write a blog, or any of that... as far as they were concerned (I think?), I was just another adult PWD. And until I tag them on Twitter when I publish this post, they also don't know I'm writing a review. Bazinga!

Friends For Life: The Booth.

Bring the You Can Do This Project to Friends For Life is an experience that I will always, always remember. It's a collection of memories that will be locked up in my heart until the day it stops beating. (Overly dramatic? Maybe. But it's true.)

I'll never forget seeing the booth for the first time and thinking, "AAAAAH! That's... this is a thing! It is really happening!"

I'll be forever grateful for the handful of people who gave up their time and money (because really, they had to miss some of the sessions they paid for) to help me out with this. Brian, Chris, Dayle, Sara, Jess, and Courtney - these people are amazing, and were a huge part of why the booth was truly a success. They helped lug a bunch of heavy stuff around (okay, we might have used a bellboy for most of it... advantage of the hotel setting); they saw what needed to be done (or what I might want done) and jumped on it; they knew how to connect with people as individuals. They were kind, passionate, and focused. They brought me Dunkin' Donuts for breakfast on Friday. They ROCKED IT.

I'll never forget the hundreds of positive responses that went something like, "This is so needed. I'm glad you all are here", or "Can I take some of these flyers home with me?", or "Wait, this isn't a company? It's just you?", or "This is so awesome!".

A parent also asked me if I'd heard of something called It Gets Better. I smiled, said that I had, and took it as a very high compliment that she made that connection.

I'll never forget the man who pulled me aside to tell me that I had changed his life, because he had realized after reading and watching that he wasn't alone.

I'll never forget the woman whom Chris directed to me, and her story: she had found the project three weeks prior. Her family is the "go-to" when there is a newly diagnosed T1 child in the area - her family is the first resource they find. She had been sharing You Can Do This with her network, and she told me that it was already changing lives. She told me that what I - and we - are doing is making a huge impact for those families. She thanked me, and I was speechless.

(Care to place a wager on whether or not that made me tear up?)

I'll also never forget the teenage girl who walked past our booth, then slowed to a stop at the stickers. She shrieked, "Oh my god! These are awesome! Can I take a handful of these?", to which I responded, "Of course!". She then turned to her friend, eyes sparkling and enthusiasm radiating, and said: "You know what would be funny? To put these on the wall of a bathroom stall. Or on someone's forehead when they go on a date! Oh my god, that would be hilarious!"

Sigh.

But really? The whole experience of actually talking face-to-face with the very people who can benefit from the support these videos supply - parents, adults with T1, teens, kids - was unreal. It had an energy that was just - wow. Do you know what I'm talking about? The air just feels electric and tastes of possibility? Where you catch yourself grinning like a fool for no reason? Where the invisible puzzle pieces of life slide together just ever-so-perfectly for a few fleeting moments? Where you know they won't freeze in place, so you just soak it up while you can?

God, I loved that feeling. Loved.

And out of the whole thing, I have a lot of new videos to share - including the one below (big thank you to Sara for putting it together!). We brought two dry erase boards with us and asked people one of two questions: "What advice do you have for other people with diabetes?", and "What kinds of things CAN you do with diabetes?".

I think it turned out pretty spectacularly. What do you think? (And what would your answer have been? Snap a photo of YOUR advice, and share it on the You Can Do This Project Facebook page.)

The Facade Of "Fine".

Whoops. I found this post in my drafts folder from last month, and thought I had published it - apparently I did not. Some conversations at Friends For Life last week actually touched on this very topic, so I think now could be a good time to *actually* put this out there. Just ignore the future tense I speak in at the start. :)

* * * * *

As I get ready to represent the You Can Do This Project at Friends For Life next month, I'm reading back through the posts, emails and comments that shaped what the project is all about. I'm reliving the emotion, candor and relief that was felt when people let their guard down a bit more and shared, "I'm really struggling. This is so hard. I want to give up some days. I hate this."

The kinds of videos that are upbeat, inspiring and optimistic are great, and they definitley have value in certain situations, for certain people. There are times that those bits of encouragement are helpful and needed. But you know what? It's easy to watch and benefit from those videos when we're already in a good place, diabetes-wise (or life-wise). It's easy to say, "Yeah! I totally got this!" when we're in a groove already.

But when we're not? When we're really far down that rabbit hole? Those particular videos might not help. They actually might cause more harm - because they feed the illusion of "fine".

It seems to be a common human reaction - to say we're fine, when we're not. We say it because it's easier; because we don't want to "get into it" with that person; because it's the expected answer. We say we're fine because if we told people the truth - the ugly, unvarnished, raw truth - they wouldn't know what to say in return. We can't be honest because that particular sort of honesty makes other people uncomfortable, and that discomfort creates more challenges for us. When we're not fine, the last thing we need is more problems.

Admitting that "fine" is a facade takes a huge amount of bravery, but that one act can permeate the lives of so many others who feel that way, too. Living under that facade of fine can feel crushing. Making a You Can Do This video is a chance to step away from that put-together version of ourselves that we tend to show others. It's an opportunity to say "You know, I actually don't have this all figured out. I'm struggling, too", and show someone else that they aren't the only one. That it's okay to be "not fine". That, sometimes, you fail spectacularly as well - but you keep on trying.

You can help lift that weight for someone else.

My original intent with YCDT was to create a safe place for people to talk about the really tough stuff, and I think we're doing just that. You'll find videos covering depression, high A1Cs, guilt, shame... a lot of people have really put themselves and their experiences out there. I love that.

What I'm hoping is that people with diabetes will continue to share the tough stuff. I know there are struggles out there that haven't been thoroughly covered yet, and I recognize that people wish there was a video for this or that particular topic.

I wish that too. It's up to you to be that resource.

It's up to you to share your story.

* * * * *

I'll have a wrap-up of "how the booth went" tomorrow. Promise. :)

Friends For Life: Just Talking.

Chris (of Just Talking podcast and A Consequence of Hypoglycemia fame) assumed the role of cat-herder a couple of times during FFL as he recorded two podcasts with a scattering of adults with T1 (and some of their spouses, too). You'll hear from folks like Lee Ann, Scott, Brian, Jacquie, Jess, Sara, Dayle, Martin, Karen, Simon, Courtney... the list goes on.

We talk about the sessions we were looking forward to, the You Can Do This Project booth (plans, and then the afterthoughts), how we met each other, pregnancy, and anything else that came up.

Head on over and take a listen!

The "before":
http://justtalkingpodcast.com/2012/07/03/friends-for-life-bakers-dozen/

The "after": http://justtalkingpodcast.com/2012/07/10/friends-for-life-aftermath/

And if you'd like to watch a small snippet of the conversation, here you go:

Friends For Life: Where The Magic Lies.

"I did the math - there are probably around 800 people with diabetes in this hotel. If they all test around eight times per day, and we're here the equivalent of five days... that means we generate 32,000 used test strips at the end of this conference. No wonder we're finding them all over the floor." - a father of a child with T1

If I told you that attending the Children With Diabetes Friends For Life conference in Orlando, FL meant that you'd be completely surrounded and engulfed by diabetes for a week (and that it might be one of the single best things you can experience as a person living with T1), would that give you the complete picture? I know it won't.

How can I recreate the feeling; the atmosphere for you? How do I adequately explain the wonder of walking not more than a few steps in the conference center without crossing paths with one of my favorite people, or making a new friend? Can I convey what all of the hugs and face time meant to my heart; my soul? What words can I use to show you how this gathering of our tribe makes us feel stronger, empowered, and more confident?

Showing off our new You Can Do This Project bracelets

The magic lies in the intangibles. The beauty lies in hundreds of small moments of serendipity.

It's in the feelings that ramped up to the exhibit hall opening on Friday - that moment when I felt that I was exactly where I was supposed to be, doing exactly what I was supposed to be doing, at exactly the right time.

photo credit: Scully

Friends For Life has this wondrous balance to it - it's the get-down-to-the-heart-of-things seriousness you need, but it also has the silly, no-one-tweet-this moments that keep you giggling for hours, days, and weeks afterward. You learn from attending sessions, but you also learn from simply being around other PWDs and their families. You can't help but want to check your blood sugar, inject, or wear your pump on the outside when you're in this atmosphere. You can't help but smile at the sea of green bracelets worn only by those living with T1. You can't help but feel, at least a little bit, like you've found your tribe.

You feel better because you are there.

You'll hear a chorus of beeps, and then a mass exodus of purse and pocket contents as everyone tries to figure out whose device it was that just alarmed. You'll see each and every food served with a carb count. You'll meet some of the most passionate and driven people in the diabetes community. You'll have the chance to hear from people who have done amazing things, given some of the very same circumstances you face.

The magic is in the moments; the atmosphere; the people.

Is it July 8th, 2013 yet?

Friends For Life: Back To Reality.

You know that thing were you just had a life-changing, sleep-deprived-but-totally-worth-it, soul-nurturing week with your "tribe" in Florida, and the shock of leaving your comfort bubble and returning to the non-diabetes world is jarring your system?

Yeah, that.

I have so much to tell you guys, but I need to get some real-world things done first. (Cue the sad trombone.)

But in a nutshell? FFL12 was an absolutely amazing experience, in every sense of that word.