MasterLab / #CWDFFL14.

Next week is going to be one big blur of diabetes advocacy and emotions (and being without my kid for a whole week) (cue more emotions) so please leave a message kthanks BEEP.

By way of a scholarship* (immense gratitude as I wouldn't be able to attend either of these events without a scholarship's help), I'll be at the Diabetes Advocates MasterLab event and then the Children With Diabetes Friends For Life conference in Orlando, FL. And then because I really love a three-pronged challenge we will also be exhibiting the You Can Do This Project during FFL's exhibit hall hours.

MasterLab is on Wednesday. The exhibit hall also opens on Wednesday. Stress; I haz it.

Luckily I have some great friends and advisory team members who are more than willing to make this all work out. (Are we sure that beaker in the MasterLab logo isn't actually some sort of cocktail, because a few of us may be looking for one after trying to balance all of this.)

I'm really looking forward to the MasterLab as a way to figure how to move some things forward, and also because I'll get to meet so many of my favorite fellow advocates in-person, finally. There's a special magic that happens when we get a bunch of us into the same physical space.

In relation to exhibiting You Can Do This Project, I want to say a BIG THANK YOU (imagine me waving my arms around in an exaggerated fashion while saying that) to two organizations that helped me pay for the stuff we'll be giving away at the booth:

Like so

Thank you to Asante Solutions, makers of the Snap insulin pump, for paying for 1,500 You Can Do This Project bracelets to be given out to FFL attendees. You may recall that I did a four-week trial of their insulin pump last December. They'll be at this conference and offering free trials with their insulin pump there, too.

Thanks also go to Akibah Health for covering the costs of printing flyers and magnets (we're going to have magnets!!!) to hand out. They are developing a smartphone case all-in-one glucose meter, and will also be at FFL.

These are incredibly generous gestures, considering YCDTP is not a registered non-profit (we're a grassroots thing that dreams of being an official non-profit some day) and the only way you'd know they covered the bill for these is that I'm telling you right now. No co-branded anything. No signs of recognition at the booth. Just this blog mention/disclosure and my eternal gratitude to them for stepping up in a "we'll help where you need it and then just kind of back away and let you guys do your thing" kind of way.

Hell yeah.

It's also worth mentioning that CWD very generously "upgraded" us to a booth space (instead of the table location we started out with), so we'll be sprawling out in our 10x10 area, maxin' and relaxin' and actin' all cool. Thank you thank you thank you, Jeff and Laura.

It will be a crazy week that I'm crazy thankful to be having. Let the packing procrastination commence!

*The scholarship from DA covers the cost of my flights to and from the conference, the shuttle between the airport and hotel, conference registration, and the hotel room that Sar-Bear and I will be sharing (scholarship recipients were required to room together, as part of the whole deal - I'm used to that, anyway!). FFL just wouldn't be the same if Sara and I weren't sharing a room!

Medtronic Diabetes Advocate Forum 2014.

This past weekend marked the third of Medtronic's "Diabetes Advocate Forum" events; the second of which I have attended (disclosure). I love being in a room full of friends - some I'd only just finally met/hugged in person - where our combined passions in the world of diabetes cause the air to tingle with purpose and potential. The room buzzed and pulsed with a sense of urgency, that with our powers combined (and I'm talking our whole community here - not just those physically in the room) we really can enact the change we want to see. We are willing to do the work. We want to motivate action. We want to be a vehicle for another PWD to find and feel the "me, too" of our community.

To paraphrase one of the event's speakers, we're all in the business of "hell yes".

Image courtesy of Medtronic Diabetes' Twitter feed. 

Like at 2012's Forum, I was again struck by the graciousness, openness, and genuine care with which the Medtronic Diabetes team crafted this event and responded to our concerns and feedback.

I expressed this to a member of Medtronic's PR team, and I'll say it again here: I recognize how difficult it must be to orchestrate an event like this one; to invite us into their home. As a group of advocates, we're documenting the whole event live (#MedtronicDAF); quoting sometimes word-for-word the candid responses to our questions (many of which may be very uncomfortable to answer). No matter what speakers, sessions, tours, food or conversations are scheduled, you can't make everyone happy as we all have different priorities and interests. Few to none of us care about making Medtronic look good; what we are interested in is how Medtronic is helping the diabetes community, and if we think they aren't, we're going to express that* to the room, and to the world. (And oh buddy, did we.)

Something felt different to me about this one.

I've attended events like this in the past and there are times where as I'm boarding my flight home, I think, "It was great to see my friends - but what did we really accomplish? What actionable items are we going home to work on? Why did I take vacation days from work (and now, time away from my 5 month-old) for what felt like mostly just a sales pitch?" If you refer to it as an "Advocate Forum", you have to deliver on that
moniker. If you invite people who identify themselves as advocates, you should be doing what is in your power to enable us to do that work.

Some important things to note about how Medronic Diabetes communicates:

• When it comes to using the verbiage "Artificial Pancreas" in their marketing of the 530G system and correcting the places in other media where the AP term was used too liberally, they know they've messed up. "We know, and we're learning." The AP language was used in the FDA's approval of the device, so that's where Medtronic took its cues from. But, as many in the room expressed, there is a difference between "can" and "should". The use of the term is inappropriate and misleading.
• And in order to learn - they listen. What we see is a small percentage of all the wheels turning behind the curtain, and what I saw when that curtain was lifted is reassuring. They may not get everything right, but they try. (One session included their PR team showing us some of their past Facebook and Twitter posts, and asking us what we liked/didn't like about what they did, and what we'd like to see instead.)
• They are listening to not just their own customers, but viewpoints from every direction. Many of us in attendance don't use Medtronic products and many faces were new to the event this time around. Coming into this event with a Dexcom CGM and a Tandem insulin pump could have been weird, but it never felt that way. I actually did a cartridge change while Dr. Fran Kaufman and one of the speakers stood directly in front of my table, a mere two feet away. Instead of feeling uncomfortable, I felt respected.
• They value the feedback they receive, even when it isn't good. Which, btw, can I make a request of y'all here? Instead of saying something like "I HATE YOUR PUMP!", take a step back and think about why. Let's be constructive in our feedback please (did Steve tell you that, perchance?) and tell them why we don't like certain features, and offer what might meet our needs better. For example: "I still can't hear the alarms when I sleep because they aren't loud enough/the pump is under my pillow when I sleep/I've gotten too used to the sounds. A broadened spectrum of alarm sounds and volumes or integration with my phone (because I wake up to my phone's alarms) would help this pump fit into my life better". There's a way to express your discontent without losing your shit or being disrespectful, and I'd encourage us all to strive for that. ::steps off soapbox::

I thought Medtronic did a nice job of making sure we could ask what we wanted to ask of the people who could directly answer our questions, and covering a broad spectrum of concerns. For example, the very first night of the Forum I was introduced to Mike Gill, Vice President of US Sales and Service for Medtronic Diabetes and asked about my experience with Enlite. It's something I appreciated during the 2012 Forum, and again this time.

Foremost in my mind, though, is that Medtronic not only assembled us but scheduled time for us to work on some of our own discussion points: essentially half of our time on Saturday. A session led by Bennet, Scott, and George saw a structured brainstorm of where we want to focus our efforts, how we can engage the diabetes community in evolving ways going forward, etc. And then the last hour of the Forum, which was one of my most favorite parts. It was essentially an "unconference" in which we were brought together, but under no predetermined structure. We were encouraged to interact with our peers about topics of our choosing; this time, on the upcoming Spare A Rose campaign (stay tuned for details) and it was magical. I wish someone had gotten video of it. It was this beautiful conversation of "how can we do this?" and then someone would have an idea but not have the connections to execute it. But then two people would volunteer, "I know someone! I'm emailing them now", and someone else would spin that idea off to something else, and a team would form to take care of that part. "But have we thought of..." and before a sentence could finish, someone else nodded and said, "I'm on it." By the time we were done, a pretty big, multi-level plan was in place.

"Hell yes" indeed.

I enjoy seeing what our community can do when we unite our voices; how a chorus can be heard so much more easily than a solo performance. It doesn't mean that we all need to get behind every intitiative, but it means that where we can, we should. My thanks go to Medtronic Diabetes and Bayer Health for footing the bill to get us all together in a space where that could happen. 

One last takeaway? That I need to map out a quantitative strategy for the advocacy I want to do in 2014, and not shy away from asking for help with it. People can't help you if you don't give them the opportunity and specifics with which to do so.

(Being assertive is a good thing - just ask Mean Scott.)

[Disclosure, as referenced above: Medtronic Diabetes and Bayer Health paid for my hotel, flights, and food while in the Los Angeles area. I was not asked to write about the Forum, and opinions are always my own.]

*Introspective observation: at the last Medtronic Diabetes Advocate Forum, I felt downright intimidated. I wasn't sure why I was there, and felt inadequate in my efforts; the quality of my questions and concerns; my ability to even get a word in among so many vocal advocates. I must be leaving my cocoon, as it were, because my experience at this Forum was full of the self-assurance, ease of speaking my mind, and occasional wearing of sassy pants that had previously only been the stuff of my dreams. Something's changed - age, becoming a mom, having success in some of my advocacy efforts, already having rapport with some Medtronic employees, I don't know - and my goodness, does it feel gooooood.

Week Twenty-Four.

Remember four weeks ago when I said I was "in the tail-end of that 'is she or isn't she?' phase of roundess? 

My bump, my bump, my bump, my bump. My lovely baby bump. Check it out!

Duuuuude, she is. I've reached a point where people have asked those around me to confirm, and co-workers are offering to lift heavy things for me. Strangers are smiling, holding more doors open and I may soon break out with an "I'm up here, buddy" as I catch people eyeing my belly.

I'm fairly certain that insulin resistance is starting to take hold now. (Cue sad face.) There are times I have a handle on things (top left image, right before the chaos, anyway), but then a few carbs/the wind/looking at a cracker will just send me to the moon. Onward, basal rates and other adjustments!

I mentioned on Monday that my Dexcom receiver busted ("busted" meaning that the button ring fell out), and it took me until yesterday to actually get around to calling Dexcom. Normally that would be okay, but I sort of forgot that I'm leaving town on Sunday (more on that in a minute) and forgot that I'd need the new receiver before then. The gal I spoke to at Dexcom was helpful, and offered that since the black receivers were currently backordered by a day - and thus, one wouldn't arrive until Monday - she could send me a different color. I don't know why I got pink; I think I must have blacked out for a second. But in the end, the hue of my receiver is far less important than having a receiver at all, so I'm delighted that I won't have to travel with a busted medical device.

I'm fairly enamored with the baby legs tutorials I've found on Pinterest, and had a go at making a pair a few days ago. My sewing machine also decided to bust right after that, though I can't confirm whether the two events are related. Right now I have a bunch of cut-up socks laying around and it's driving me crazy that I can't finish them.

Okay, and then to circle-back to the travel comment: from Sunday through Tuesday, my footlong sub* and I will be traveling to Indianapolis for Lilly Diabetes' third second annual Blogger Summit. (Disclosure: Lilly Diabetes is covering the expenses of my travel, lodging, and meals during the summit.)  I hope that our DOC group will be able to walk away from this event thinking, "yeah, we actually got a list of actionable items to work on together in the coming year, and I feel my time here was productive for the diabetes community as a whole". We've been told there will be more info given on the Lilly/Disney partnership, as well as a tour of an insulin manufacturing facility and a meeting with some of Lilly Diabetes' leadership team.

If you have something you feel we should bring up to Lilly while we're there - please leave it in the comments below, and I'll do my best!

*One of this week's pregnancy tracking email updates likened the current estimated size of Baby Girl to a footlong sub, which I found particularly cruel as cold cut subs are on the "hell to the no" food list and now all I want is a darn turkey and cheese sandwich.

Medicine X: A Stretching Of The Mind.

The more time that goes by after Medicine X, the more unsure I become of what I want to say about it.

Nothing seems adequate to explain the transition from my full-scale freakout two days before traveling (there may have been a miscommunication about how many nights I was allowed to stay at the hotel, and it may have been the last thing in a long line of "things", and it may have resulted in me crying - not the dainty sort of tears, but an ugly cry that I locked myself in a restroom stall at work to deal with, and that completely freaked me out because I have never reacted to anything so dramatically and uncontrollably before, but now this tangent has gotten really long, so let's get back to task here) to the unreal feeling of being a guest on Stanford's campus and getting to be a part of this amazing and unique experience, to the growing feeling that I actually began to feel comfortable among the crowd, to the realization that there is so much more to know (about patient advocacy, about healthcare, and about how the two merge) than I can ever hope to grasp, but I'll be damned if I don't keep trying to do just exactly that.

It was exhilarating and exhausting and mind-stretching, and I feel so humbled and honored to have been able to be a part of it.

Some of the most moving moments of the conference, for me, happened during the "Ignite talks" - the young arthritis patient whose doctors dismissed her as a hypochondriac; the widow whose experiences with her husband's health care has driven her to be a voice for humanizing the patient experience; the man whose isolating personal experience with Crohn's disease drove him to build an online community for his fellow patients. (You'll find more and more of these talks uploaded to the Medicine X website as the videos are edited.)

But the magic was not just in what we heard and what we learned, but in what we could discuss. Medicine X brought together patients, researchers, designers, entrepreneurs, healthcare providers, students, and technologists. We had the opportunity to interact with each other face-to-face; to bounce ideas off of each other (I may have, in a wild moment of bravery, approached one of the guys behind the iBGStar meter and pitched him my idea for the kind of CGM-like sensor I'd like to see: one that can monitor more than just our interstitial glucose, but the factors that cause the fluctuations: blood pressure, heart rate, white blood cell count, exhaustion, hormones - and wouldn't you know, he actually seemed to take me seriously); to see, as patients, the human faces behind the often seemingly monolithic forces behind healthcare.

Speakers on Day 1 helped me become more familiar with terms like participatory medicine and self-tracking, and shared refreshing thoughts such as the belief that "the best way to design useful tools is to notice and respect what people are already juggling in their lives." (Quote from Susannah Fox.) Having not had much experience as a hospital patient myself, presenters such as Dr. Roni Zeiger and architect/designer Michael Graves opened my eyes to what is, and what can be.

...

...and this is where I stopped writing last night at 11:30pm, because I was so tired and really wanted to get to sleep. I figured I had said what I needed to say for the night, and I’d pick up where I left off later on. 

As the clock turned to 1:36am, I savored the last bits of a dream. Actually I didn’t realize it was a dream until a few seconds later, when I woke sharply out of it. I had been watching a very well-produced video that had moved me deeply, and then I had copied the link and pasted it into the blog post I was working on (which was this post). Except I didn’t actually do any of that, as I was startled awake by a low blood sugar. 

I lay motionless for around ten seconds, combing through what had just happened. I had hit ‘save’, right? Well, yes I had - but that was in the dream. The video didn’t actually exist, and the longer I laid there, the less I would be able to recall about why I thought it was so poignantly brilliant. I knew it ended with two people walking down a sidewalk, holding hands - I think my brain had made that to represent the patient and the healthcare provider joining each other on the road to "better".

(and this is the point where I spilled half of my juice on myself because I was still low as I wrote this) 

I pushed myself upright somehow; little strength available to me at that point. It was one of those completely disorienting lows that left me with little in the way of logic, balance, or rational thinking. The hallway bounced me around as I attempted to walk through it, or was that not real either? I ended up in the kitchen and drained my first juice box, while simultaneously pawing around for a notebook; a scrap of paper; anything. I desperately needed to get down in words the epiphany I had just had in my dream. 

Here’s what I got out: 



Yeah, I don't really know either, now that I look at it with properly glucosed eyes.
Hat tip to the juice box straw wrapper, though.



I'm keeping this really long intermission in this post because I want to help you (and when I say "you", I'm referring to anyone who may read this that designs, researches, studies, or otherwise is involved in healthcare) remember how a chronic condition like type 1 diabetes can impact every single bit of a patient's life. It disrupts our sleep; it can weaken us during the very moments in which we wish to be strong; it never leaves the equation of our daily lives. Many of us may flourish, but it is nearly never with ease. But even so, we are strong - partly because we are compelled to be, and partly because we have to be to survive. Our narratives can move and change and inspire, and that is why we must share them. We cannot expect designers to be able to develop these "useful tools" for us if we don't share with them why and how they need to fit into our lives.

So what have I taken away from Medicine X? I think that answer will continue to evolve over the next few months. Seeing and hearing from patients in other pockets of chronic illness (meaning, outside of diabetes) helps me both appreciate and empathize how far healthcare has come, but also where it needs to go.

The best part of that last conclusion is that we, the patient advocates, are gaining an increasingly influential role in how that future is shaped. We have an obligation and a right to speak up. We must.

Check out the Stanford Medicine X Flickr account for images from the conference, as well as the Medicine X website for videos and other details.

#MedX And A Bunch Of Bullets.

I know I haven't even recapped the TCOYD experience, and now I can add the Med X conference to that list... so, obviously, the answer is to blog about neither right now. Instead: bullets.

• One way to mark American Diabetes Month (which is next month - wow, that snuck up fast, didn't it?) is with the American Diabetes Association's "A Day in the Life of Diabetes" campaign. Share a picture on the ADA's Facebook page that represents your diabetes experience - it can be of yourself, your child, a place, object, or whatever you like - and for each image shared, CVS/pharmacy will donate $1 to the ADA, up to $25,000. 
• In case you wanted to know if a periodic table of cocktails existed, it does. (And it tells you the carb counts for each! I'd like to make an element joke here, but it seems like all of the good ones argon.)
• I was delighted to be asked to contribute to Diabetes Forecast (!) magazine for the first time by interviewing Haidee Merritt, and the article was published in the October issue. Check out the article here.
• Continuing the theme of "talking about cool people", the WEGO Health Awards are now open - cast a vote for the health activists you want recognized!
• The Med X folks did a super job of capturing many of the presentations/talks in very high quality video, which I appreciate not only for those who couldn't attend, but for me so that I can go back and watch some of the ones that went over my head the first time.
• Also concerning Med X: Cherise, Chris, and I spent a few minutes reflecting on the conference experience on this week's episode of the Just Talking podcast - found here.
• I ended up on this list of "20 Five Star Quality Diabetes Information Sites", and while I am flattered to be in such good company, I'm a little skeptical of a "Top Whatever" list of diabetes sites that doesn't include Kerri. Right?
• Last night found me lost in a video vortex. First I watched as some poor girl transformed herself into an anime doll (WHAT), and then tuned into a livestream of Corgi puppies (the link is currently down, or I'd hook you guys up). It was a rollercoaster of emotions.
• There will be a second installment of the "We Can Do This" group video series (Remember how the first one had people who were diagnosed with type 1 as adults? And then the idea fell off the face of the earth for a while? It's back.), which I'll be releasing this week - so make sure to head over to the You Can Do This Project site on Friday to catch the new video.

And lastly... this exists. I didn't buy it, but I did laugh.

Medicine X.

Tomorrow I'll be heading to Palo Alto, CA to attend a conference at Stanford University called Medicine X (#MedX for short). In the words of conference organizers, Med X is "a catalyst for new ideas about the future of medicine and health care. The Medicine X initiative is designed to explore the potential of social media and information technology to advance the practice of medicine, improve health, and empower patients to be active participants in their own care. The “X” is meant to evoke a move beyond numbers and trends—it represents the infinite possibilities for current and future information technologies to improve health."

A conference that merges health, technology, and social media (and focuses on the patient)? Heck yes.

What's especially cool about this particular event (aside from "holy crap it's Stanford" and "the guy who designed half of the stuff I use in my kitchen and closets will be giving a keynote" and the obscene number of coffee breaks built into each day) lies in the thoughtful persistence that resulted in around 35 ePatients, myself included, being able to attend through some scholarship help. From what I understand, the historical problem with health conferences is that while they may talk about patients' needs and concerns, they don't typically make efforts to include and engage with them. (This year's ADA Scientific Sessions, for example.) Other DOC faces you might recognize include Dana, Cherise, Chris, Jewels, Lizmari, Amy, and Mike. What a great group!

If you are interested in tuning into the conference via webcast, Stanford recently announced that they'll be offering a high-quality live stream of the event. (Rock!) Find it here, and access the webcast by creating an account and registering for the "2012 Global Access Program". You may also follow the conference conversation via the hashtag #MedX, and you know we'll be tweeting and posting to Facebook as we go, too.

See you next week!

Sara, Meet Crazy Eyes.

The eagle has landed!

(And when I say "eagle", I mean Sara.)

ROADTRIP!

Tonight, along with Aaron, we'll drive to Des Moines, IA for the Taking Control of Your Diabetes (TCOYD) conference, which takes place tomorrow. We'll be exhibiting a table for the You Can Do This Project, and I also will be helping to co-present a session on CGM use. (!) Good times! Unfortunately, Billy won't be part of them, but he'd probably just end up tripping people in the exhibit hall anyway.

More to come next week - Sara and I are off to do some cornhusker-ish sight seeing before we head out of town. :)

You Can Do This: Joe Solo.

Last year was the first time I became aware of a guy named Joe Solo. (Actually his full last name is Solowiejczyk - much like my own name, it's often mispronounced.) My introduction came during the Friends For Life conference last year, and as it was my first time there, the whole thing was new to me. I didn't know that CWD gave out awards each year. I also didn't know why the room of 3,000 or so people suddenly rose to their feet during the banquet dinner one night, generating loud applause peppered with "Wooo!"s and whistles.

"Who is this? I don't even... but everyone else is clapping. Okay." And up I stood, clapping along with them, for this stranger on stage. It was later mentioned that he had marked 50 years with type 1 diabetes earlier that year, so okay, that's pretty cool, but still - I was perplexed. Why were my friends so in love with this guy?

Then I attended what I believe was called "Diabetes Burnout" - a session Joe led. Literally within the first minute of his opening remarks, it hit me. Oh. This guy. This guy speaks my language - including the bad words! I love this guy! And I got it. It happened again this year; I chose a session that ended up not being what I expected it to be, and taking the suggestion that was presented to us on day one of "if you're in a session and you don't dig it, it's okay to get up and leave and find one that suits you", a few friends and I headed to Joe's session. Within the first ten seconds of entering the room, I felt as though I had found "home".

It's not enough to tell you that he "gets it". I'm not sure it's enough to tell you that he might be one of my favorite PWDs to listen to; that the wisdom he drops will blow your mind, if you haven't heard it before; that he is what I think the epitome of the spirit behind You Can Do This is. He's not perfect, and he realizes that. He celebrates that. And you know what? If Joe can survive type 1 diabetes for 50+ years with the attitude and personality he continues to have - there's a lot of hope for the rest of us.

LivingVertical.

On Tuesday morning - the finale of the Roche Social Media Summit - our group was given a chance to hear from the rock climbing, type 1 diabetes-having, and all-around inspiring Steve Richert. Together with his wife Stefanie, he founded LivingVertical - an organization that aims to "empower people with diabetes to overcome daily challenges" by showing what you can do (hat tip!) with diabetes. Project 365 is a self-imposed initiative that Steve and Stefanie signed on for - a documentary they're filming that requires Steve to climb every day for a year. It means that they quit their jobs, sold their home and most of their worldly belongings, and packed up their car to go live on the road while making the documentary.

Dude. Yeah.

Here's a snippet of Steve's talk, along with a bit of the Q&A session:




He was also nice enough to agree to film a You Can Do This video, and share some images and climbing footage to go along with it:



A little fundraising call-to-action was announced as well: Roche has gotten behind what he's doing and will be donating $1 to Steve's foundation, LivingVertical (up to $15,000) for every "like" that this video gets. Head to www.stevesmountain.com to find out more about Steve and his journey, and follow their blog at www.livingvertical.org.

Go Steve, go!

Everything Is Amazing.

My time spent at the Roche Social Media Summit gave me a lot to think about.

Let me preface this by saying that I'm grateful to have been one of the thirty-ish people invited to attend. I didn't have to pay for any of my travel expenses to get there, for my hotel stay, for the food I ate while there, for the minor league baseball game that the majority of our group attended, or for any of the goodies in my swag bag. It makes me feel incredibly lucky to have the opportunity to do something like this, and I remember well how it feels to be on the outside of what can sometimes appear as a "party with my friends". I've been in a near-continuous state of amazement for the past two years that anyone cares to know what I think about anything.

Some of the discussions at the Summit had great benefit, both for Roche and for those members of the DOC. The speakers Roche brought in were phenomenal. The brainstorming we did produced some productive ideas - at this point, still just ideas. I hope they blossom into something more than just words.

Advocating, at its core, is about people. It's about relationships. It's about striving for better outcomes and health; for helping things to get better for us, and for others. People choose to advocate in ways that are comfortable and meaningful for them. They do what they can with what they have, and often strive for better than that. That's how it should be.

When I found the DOC in 2009, the "people getting invited to stuff " thing was already the norm. Relationships between influential patients and pharma companies had already begun to form. While these events (and who went to them) weren't what I was mainly concerned with (and still aren't), they were on my awareness radar.

What I've been grappling with lately, and what I hope you'll pause to consider along with me, is what I perceive to be a shift in priorities. I think it's good to have events that bring patients face-to-face with both each other, and with those whose business it is to provide the market with tools and options that can help patients manage their health. What makes me uncomfortable is how we do that., and it's a two-fold dilemma.

The first is how these events are handled. Was it lovely to be able to stay at what was probably one of the nicest hotels I've ever been in? Yes. Was it likely the best use of Roche's money? Perhaps not. What if we bare-bones this thing? What if we all stayed at a Holiday Inn and used the surplus to do some social good - donate it to a charity, pay for some sort of community-enhancing effort, funnel it into a patient assistance program? Would we still be able to accomplish something; would we still have those same conversations? I sure hope so.

I hope I'm not the only one that would go along with this idea.

The second part is less easy for me to articulate, but I'll try - with a hat tip to Louis C.K.

I want all of us in this community - and this includes me - to keep that phrase in mind.

"Everything is amazing, and nobody's happy".

I want us to remember this phrase when we worry that our blog hits, Twitter followers, or pageviews aren't "high enough".

I want us to remember this phrase when we are so ridiculously lucky to be at an event that so many thousands of others can't afford or weren't invited to, and choose to complain, in a space where so many of those thousands can see, about how bored we are.

I want us to remember this when we don't get the reaction from others that we think we deserve; when we become frustrated with technology; when we believe that the world owes us something simply because our lives and health are not in line with what we expected.

When we do these things as advocates, I hope we can check ourselves (before we wreck ourselves): does this go back to people, or is this just about me?

Do you know how lucky we are to be on this Earth, right here, right now? We have machines that can connect us, FOR FREE, to millions of people all over the world - and we can talk about whatever we choose. We have tiny computers that can fit in the palm of our hands, which by some combination of magic and science can tell us what our bodies are doing. We have insulin to keep us alive. We can consume tiny bits of medicine that help our bodies function. We can use a seat in the sky to get us anywhere in the world we want to go. We are here - NOW.

We have language and the means to use it to comfort, console, inspire, and enlighten each other. For as much as there is wrong in the world right now, there is so much right. There is so much good. And when we focus on each other - on what we can do to love and help others - we can become something much bigger. Much better.

We have each other.

I hope you remember how amazing that is.

The World Needs More Dancing And Puppies.

As I climb my way out of the Stuff I Need To Catch Up On After Traveling Vortex, I've taken a bit of a writing breather here. I'll be back at it next week, but until then... semi-narcissistic bullet points.

• You'll find a guest post from me about diabetes and social media over here.
• I was able to record a couple of You Can Do This videos while at the Roche Social Media Summit this week, and when you combine those with the videos still left to share from FFL, my head explodes a little bit. Don't worry; I'll clean it up. (But seriously - the videos are awesome, and I'm excited to get them ready to share.)
• Speaking of the Summit, I want to share a couple of things (at least) from what I experienced there - it was my first time attending, and I was grateful to be among so many good people doing good things. More on that next week.
• My Verio meter seems to have gone missing. At what point do I put its picture on a milk carton? I can pay you in test strips... that I can't use, if I can't find the meter... 
• Have you ever met a sport team mascot that could booty dance? I have.

• I actually can't remember if I've mentioned this here yet, so forgive me if I'm repeating myself...
  a couple of months back, my friend Chris made me aware of a scholarship program for a conference I'd never heard of: Medicine X. It's an academic conference taking place this September, created and run by Stanford University (I KNOW RIGHT) and designed to address "the intersection of medicine and emerging technologies". I ended up being selected as one of the 35 e-patients who will be receiving scholarships to attend - which is way, way cool of them to work so hard to get the patient voice represented. This week, an e-book was released, introducing the e-patients that will be at the conference. (My section is essentially a rephrasing of my scholarship application.) I'm honored to be listed amongst such great company!
• And lastly, the world finally has a 24-hour Corgi Cam. Happy Friday.

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.

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.

YCDT Swag at FFL.

You may have seen me hinting during the earlier parts of this month that I'd secured some "giveaway" items for the You Can Do This Project table at the Friends For Life conference next month... and now I can finally talk about them!

Thank you to the extreme generosity from both individuals and companies for making these possible!

Here we go:

Each of the following two items will be won by a drawing we'll have at the exhibit hall:

And freebies to give away to conference attendees? We have those too!

I want to draw special attention to those last two items, because they are being completely paid for by the indicated parties. Brian volunteered to make these stickers happen, and I'm really excited and grateful! Hope Paige Medical could have easily and understandably turned down my lofty (and, frankly, uncomfortable for me) pitch of "Hey, you should let me design a silicone bracelet, and then make several hundred of them and ship them to me for free. Yes?", but instead they're doing exactly that, and I'm once again thankful for their generosity! (This is the same company who sponsored twelve medical ID giveaways last year to support You Can Do This.)

I'm also going to hint that I have another very cool giveaway lined up... for TCOYD! Details to come.

In the meantime, will someone jump up and down with me a bit? THIS IS SO EXCITING!!

To find out more about these kind folks, follow the linkage:

Cari's Etsy Shop: www.etsy.com/shop/CCARIA

Kewl Innovations (makers of the ClimaPak): http://www.kewlinnovations.com/

Not My Cell (Brian): notmycell.blogspot.com/

Hope Paige Medical: http://www.hopepaige.com/

Lilly Diabetes Blogger Summit 2012: So Emotional.

"People may not remember exactly what you did, or what you said, but they will always remember how you made them feel."- Maya Angelou

I'm starting this post with the above quote because I think it best describes how I'm processing the Lilly Diabetes 2012 Bloggers Summit, which I and several others attended on Monday. (I was reunited with Cherise, Kerri, Scott, George, K2, Kelly, Bennet, Mike, Lorraine and Leighann, and had the pleasure of meeting Tony and Scott for the first time.) I hardly took any notes, so this isn't the place to go if you're wanting direct quotes from Lilly executives.

Most of the day was spent either touring some part of their vast campus or in a discussion-based atmosphere, and I wanted to be an active participant in those things. I wanted to resist the gravitational pull that my laptop and social media tends to rope me in with, and really dedicate my attention to listening, learning, and voicing my thoughts.

Let me state this now: I like Lilly Diabetes. I can say (now that I've experienced a bit of it in person) that I like the culture they're striving to build. I appreciate the attitude they've displayed towards the need for them - really, the need - to engage with their customers in the diabetes community. I was impressed, on various levels, with the individuals we met during the event. It also doesn't hurt that I've been a customer of theirs for many years, so there's a bit of attachment-by-association thing going on. I would bet I'd feel a similar way if I were to visit Animas, Lifescan (who make the OneTouch meters I use) or Dexcom.

I will also say that I particularly like some of the graphics they've chosen to install in their workspace. (Shocking, right? I'm not a visual person at all. /sarcasm) In fact, I might have immediately teared up when Scott Johnson pointed one of them out to me.

It's difficult for me, as someone who is cognizant of how very fragile this chance at her life is, to not feel some emotional connection to Lilly. This was the first company to successfully launch large-scale production of insulin, and if that hadn't worked out, who knows if any of us who are insulin-dependent would be living the lives we're living now. It was apparent to me, at least a couple of different times throughout the day, that the folks at Lilly didn't expect the emotional response they saw when we toured Heritage Hall (their own little history museum); when we heard the winning entry to the Once Upon A Time contest read aloud (the winner will be publicly announced sometime next month); during our tour of an exact replica of Eli Lilly's original labratory (which was amazing, and humbling, and made me appreciate the crap out of how far we've come), or when they discussed their hopes and intentions for the Lilly/Disney books.

I think I got misty-eyed enough times that the folks at Lilly probably started wondering what was wrong with me.

This sort of stuff is so emotional though, when you're living with it. When you're thinking, this book can help so many kids feel better about living with diabetes; about being "different". This can help normalize something that feels so alienating. This is something that I wish I had grown up with. It's emotional when you see a photograph of the amount of beef and pork pancreases that it took to derive just one small bottle of insulin back in the day, and you learn that the location of that pile is still on-site (it's now the parking lot).

It's emotional when you see that in the main lobby of the whole building, they chose to erect a statue based on that famed photo you see in the case above; the one of the mother holding her child with type 1 diabetes, shortly before insulin treatment was available. You can feel the desperation and horror in the mother's face; the sheer agony in the son's. I saw this photo in a case at the Heritage Museum, and had to spin on my heel and walk away. I know there's a photo right underneath of him after starting insulin therapy (in his letter to Dr. Banting, he triumphantly wrote "I am a fat boy now and I feel fine"), but I just can't do it. That image breaks my heart in a thousand pieces. The line between life and death smells like bandaids and fear.

In summary - Lilly, and its history, cause me to feel a lot of things.

As for what else I took away from the day, I'll say that while there may be room for improvement (for example, I get close to zero value out of their LillyPad blog - I want to read patient stories, I want to learn about the PEOPLE behind the brand, and I want to know about the good they're doing in the diabetes community and beyond), I see Lilly as being very eager to engage in social media - even if they aren't quite sure what that will look like, or how exactly to do it within the regulatory confines they operate within. They appeared to be very open to feedback (for example, why are the Lilly/Disney books only available in endocrinology offices? If the whole point behind them is to help "normalize" diabetes, make the books available in "normal" book places - like public and school libraries), and willing to realize that social media actually means that they need to be social - it isn't a billboard. People need to be able to leave comments on blog posts, and Twitter accounts need to engage in the conversation.

They can also do a better job of letting people know the good they are doing - I know that I was one of many in the room who didn't realize Lilly had started a partnership with Walmart in 2010, in order to provide a lower-cost option for insulin users, for example.

In summary, I think Lilly is headed in a good direction when it comes to reaching out and interacting with the diabetes community. I hope the discussions we had and insight we provided can help continue the shift towards engagement with the customers they serve.

In other words: I appreciate both where they've been, and where they want to go.

Disclosure: Lilly Diabetes invited me to attend their 2012 "Blogger Summit", which occurred on 5/21/12. Lilly Diabetes paid for airfare, hotel, meals and transportation around Indianapolis during my stay. I was not asked to write about the event, but we all know that I totally will. They also gave us the books you saw above, along with a copy of "Breakthrough" by Thea Cooper and Arthur Ainsberg.

For more photos of the event, check out the ones I uploaded to Flickr.

We've Got A Booth. WE'VE GOT A BOOTH.

Remember back in February, when I was all, "Hey, wouldn't it be cool if we could get a table at Friends For Life for the You Can Do This Project"?

And then remember how, about five hours later, you guys totally blew me away with your speedy and generous donations, and we met (and then proceeded to exceed) the fundraising goal I had set?

And then (and then and then and then) I told you guys that we had a table reserved?

Well, I have good news. I must have a fairy godmother, because that table has now turned into a LEGIT BOOTH SPACE.

My heart, it soars.



As far as I can deduce, we're the only grassroots organization represented in "the hall", as I'm now referring to it. Everyone else is a registered non-profit, or a for-profit pharamceutical company, and probably has some sort of income that allows them big, cool signs and flashy give-aways.

You might be able to guess that we won't quite have that.

What we will have are passionate volunteers (some of the You Can Do This Project Advisory Team will be present, along with a few other friends in the community) willing to talk to people about what this intiative is all about, what resources they'll find through it, and how to participate, if they choose. We'll probably have some postcard-sized flyers to hand out, and maybe a couple other things. (For those wondering, the booth didn't cost extra. FFL very, very kindly offered me an "upgrade", as they had some rearranging of the hall space to do. I was happy to help.)

The money raised in February has secured the hall space for both FFL and TCOYD Des Moines, along with some of the printing costs for flyers and a sign. Somehow, I'll need to find the extra cash for things like giveaway rubber bracelets (how cool would it be for kids and adults alike with T1 to have that encouraging reminder to take home on their wrist?) and the other odds and ends that need to come together. Like, for example, a table. (Booths don't automatically come with them. Ironic, no? I was literally only paying for a table before.)

Anywho... that's the scoop at this point. I like to keep you all informed. This whole thing is aimed at getting more people and families connected to people who "get it" when it comes to life with diabetes, and it's about ALL of us supporting each other. I can't do this without you all. Thank you.

Wordless Wednesday: Borrowed Inspiration.

From a wall at Lilly Diabetes US.

Disclosure: Lilly Diabetes invited me to attend their 2012 "Blogger Summit", which occurred on 5/21/12. Lilly Diabetes paid for airfare, hotel, meals and transportation around Indianapolis during my stay. I was not asked to write about the event, but we all know that I totally will.