Free Coffee, Twenty Five, and e-Pharmony.

I'm feeling a bit list-y today, so here we go.

• Last night, I decided (after seeing another one of their commercials) that we need a version of e-Harmony for patients to be matched up with doctors. We could call it... e-Pharmony? You'd be matched up on dimensions of healthcare compatibility, like "bedside manner", "actually listens to me", "will reward progress with high fives and exploding fist bumps", and "takes my insurance/Medicaid/I can afford you".
• This weekend, my diabetes turns 25. (Does that mean the cost of my health insurance will go down? No? Darn.) I'm planning to celebrate that at least a couple of times this weekend - more on that next week.
• And in honor of that milestone, I got a hold of my hospital records at diagnosis. More on that later, too.
• One of the JDRF volunteers I met at JDRF Government Day has written a guest post over at the Diabetes Social Media Advocacy site, and is looking for input on how JDRF can help adults with type 1 - would you have some time to go over and check it out, and leave a comment with your thoughts? (She's totally a rockstar!)
• And finally - in celebration of Earth Day, head over to Starbucks with your own mug and get yourself some free coffee. I'll be there - maybe more than once. :)

The Cost.

Something Jeffrey Brewer said at JDRF Government Day has been rolling around in my head.

It was something small; one point among many in his speech. My memory won't allow me to quote him verbatim, but I think I can get fairly close.

"Living with diabetes is much tougher now, in some ways, than it ever has been. In the years before modern insulins and glucose testing, you took one, maybe two shots a day, and that was it. Now you have blood tests and insulin pumps and CGM data serving as constant reminders of the disease. It's something you're always thinking about. Something you can't escape from analyzing." - Kim, channeling Mr. Brewer

He made sure to qualify that point by saying that technology is certainly a good thing - many of us are in far better health than we'd be if this were, say, 1962. The tools we have now enable us to be healthier than any past generations of diabetics ever had a chance at. We can be grateful, so grateful, for that.

But the other side of that is its cost. The mental cost.

A CGM doesn't let you forget. It buzzes; it beeps. It needs a calibration. It tells you you're dropping. It reminds you you're still above 200.

It's always there, chirping at you: "Hey, you still have diabetes!"

All of the correction boluses, the precise insulin measurements, the tailoring of basal rates, the tightened glycemic goals, the post-prandial levels, the aim for those pretty A1C numbers... they help and hurt, all at once.

Mr. Brewer emphasized that one of JDRF's goals is to lessen that mental cost for those of us with diabetes. He, too, would like to see the day where people with diabetes don't have that relentless reminder at all hours of every day. Where we can, using the technology available now and into the future, go back to not really thinking about it. Where we can take all of the time and energy we've put into our diabetes care, and focus that into another worthy cause.

This is the kind of thing that helped me decide that JDRF's new CEO "totally gets it".

And it gives me hope.

DOC in DC: Part Four.

Some reflections to wrap up the bigger ideas left in the "DOC in DC" series:

• In what was possibly the first group #sweatbetes session ever, I got to see Scott Johnson do turkish get-ups in person. (And I totally chickened out when he asked if I wanted to try doing one. He's a total rockstar!) I also found out that, apparently, I don't have to bolus for post-workout ice cream at midnight - never went above 150 and woke up at 123 the following morning! It was a diabetes miracle!
• Hearing JDRF's new CEO, Jeffrey Brewer, talk during Sunday night's dinner and again the next morning with our blogger group was pretty cool. Like most everyone else, I was previously only familiar with the infamous diaTribe interview he had done, but it's hard to get a sense of a person from words alone. (P.S. I did ask him, in our blogger meeting, if we could get him to do a webcast. It sounded like a possibility - I'm keeping my fingers crossed!) I can tell you that after Government Day weekend, I'm totally a fan of the guy. As I tweeted during that Sunday night dinner: "He totally gets it." He understands the need to engage the online community, to include type 1's diagnosed as adults, and the value of those of us who grew from "juvenile diabetics" into "adults with type 1". He also had the guts to admit he "could have worded some things differently" when talking about the expansion of JDRF's mission to not only work towards a cure, but treatments to live better with the disease right now. Admitting fault isn't an easy thing to do for anyone - and that earned him some major points in my book.
• Switching gears - I had cheese pretzel hotdogs from Auntie Anne's in the Washington Reagan Airport for the first time - OMG. So bad, but sooo good. (Okay, maybe these aren't all "bigger ideas"...)
• The JDRF Grassroots staff in D.C. is awesome. (That includes the interns! You ladies rock!) They were all so enthusiastic, so helpful, and put together a fantastic event. We have some great people working hard for our cause there.
• Monday night's cupcake dinner. I can't even tell you how awesome it was to meet Dayle, Chris, Sarah, Miriam, Kevin, Lindsey, and to hang out with everyone there - I mean, just look at how happy we all look in this picture! :) My CGM graph even resembled a cupcake that night:

• Sunday was the Blogger/DOC Roundtable session, and my only regret is that we didn't have more time! I felt like we could have gone on for the rest of the afternoon, with as much as all of us wanted to share, and all of the questions that came in. To everyone who watched/participated/cared, thank you so much. I think all of us there, representing the DOC, felt so proud and honored to be able to share what this community has done for us, and what it can do for others.
• How is this for ironic: a weekend all about diabetes advocacy included many of our DOC group having really bad highs or really bad lows?
• And finally, Cherise and I found these at the airport on our way out of town. We took it as a sign of good things to come. :)

Not quite as fancy as Sprinkles, but he's still pretty cute.

*You can find my other posts about JDRF Government Day here, here, here and here, and a bit of a "master list" of blogs (not just mine) who have discussed the event here. As I've mentioned before, the Juvenile Diabetes Research Foundation has not asked me to write about their Government Day experiences, and the opinions expressed here are my own.

DOC in DC, Part Three: Planes, Trains and Shuttle Buses.

Airports are an unending source of stories - and so is the Metro.

* * * * *

Hadn't had any of this yet.
That may have been part of
the problem.

We already know the tale of The Girl Who Doesn't Like Airport Security. She also happens to also be The Girl Who Especially Doesn't Like Airport Security At 5:30 In The Morning, and yet all of this was in play at the time of our story.

Making it to the airport in plenty of time, The Girl checked her suitcase and headed upstairs to the tiny airport's TSA screening areas: one to the left, one on the right. Because the one to her left was completely deserted, she headed to the right, following all of the other people. She did the whole hurry-up-and-take-shoes-off-OH-GOD-OH-GOD-I'M-NOT-GOING-FAST-ENOUGH dance, got all of her things situated into four bins, and started sliding them down the conveyor belt.

When she reached the TSA agent, she handed him her boarding pass. He eyed it for a few seconds, grimaced, then spoke.

"Ma'am, this line is for the United gates. You have to go to the other side for the Delta gates."

She looked behind her at the tumbleweeds blowing by the other security checkpoint, and came back at him with an incredulous expression. "Over there? Um... there's no one over there. That line is closed. That's why I came over here. Aren't the gates connected once you get past security?"

"Nope, they're not. Don't worry; someone will be over there soon."

"Ugh."

Embarrassed and shoeless, The Girl hastily slipped her shoes back on, gathered her things awkwardly into her arms, and waddled over to the other side of the airport.

Suddenly, she was thankful it was 5:30 in the morning, and not in the afternoon. (Less witnesses!)

After several minutes of waiting for the checkpoint to be fully staffed, she made it up to the front of the line. As she's done so many times before, she disconnected her insulin pump and shoved it into the ziplock bag with her glucose meter and vacation loaner pump, and handed the bag to the TSA agent.

"Hi! This bag has diabetes equipment in it that cannot go through x-ray, so I'd like for them to be hand-checked, please."

This should be an easy request, she hoped.

"Aaah, what's in here? Is this an insulin pump?" The Agent looked through the bag and shuffled its contents.

"Yep."

The Agent gave her a suspicious look. "You know this is just a metal detector, right? It's not an x-ray."

"That's fine - I'd still like to have them hand-checked."

The Agent started to dig his heels, albeit politely. "You know, we get hundreds of insulin pumps through here, and people always just go through the detector with them."

This back-and-forth went on for another minute or so. The Girl knew how to dig her heels, too, and wasn't willing to take a chance at sacrificing thousands of dollars of equipment.

"Actually", The Girl said, "I know that may be the case for some models, but the one I have has a lot of metal in it. The manufacturer has specifically told me to have it hand-checked when I go through airports." (The Girl might have been going off of year-old information at this point, but she honestly just wanted to go the safe route.)

A few more polite disagreements were exchanged, until they reached a standstill. The Agent finally said, "You know, I'll go ahead and hand-check these this time, but in the future, this might be an issue for someone. (Editor's comment: because that whole conversation we just had doesn't qualify as "an issue"??) When you're telling me that this is a life-sustaining medical device that you have to wear, but then you're taking it off - that raises some red flags, you know?"

Oh, I'll raise a red flag for you.

The Girl fought the urge to roll her eyes, and smiled instead. "I understand. Though I've been through several other airports a lot larger than this one, and never had this issue before, I understand your concern. I appreciate you hand-checking it for me."

After that ordeal was through, The Girl gathered and repacked her things, headed to her gate, and took a seat. After a few minutes, a group followed suit and sat in the row behind her. The Girl caught eyes with one of the ladies, and the lady immediately piped up, "What was his deal?? You have diabetes, right?"

The Girl and the lady had a nice chat about how ridiculous that was, and how neither of them had ever seen a PWD hassled like that in an airport about an insulin pump. The lady relayed that her husband has type 2, and asked about The Girl's insulin pump. The Girl couldn't help but gush a little bit that she was headed to D.C. that morning to do some diabetes advocating. 

She wouldn't let a TSA agent ruin this trip, or begrudge him for causing this spontaneous diabetes conversation between strangers. The Girl was rather enjoying this particular side effect of the situation.

* * * * *

The Girl's flight out of D.C. was a much different experience. 

Joined by her buddies Cherise and Allison, and her rockin' Blunt Lancet bandmate Kelly Rawsugar, The Girl stood in line for security again. They noticed that this airport had not only a metal detector, but one of the full-body scanners, and got excited. The four friends mused, Wouldn't it be cool if we ALL got patdowns? We could all write about it! We could even use a hashtag about it - #patdownsolidarity!

Sadly, this was not their fate. Kelly and Allison were waved through to the metal detector (and passed with flying colors), while Cherise's OmniPod caught the attention of the TSA Agent. While Cherise was sent to meet the full-body scanner, The Girl told the agent about how she can't go through the scanner with her robot parts (by this time, the agent looked a little bewildered by having four people in a row with insulin pumps). She asked for a patdown instead, and the agent called out, "FEMALE CHECK NEEDED!"

The Girl could see her friends on the other side of the checkpoint, grinning from ear to ear about what was about to go down. They yelled, "We'll grab your stuff!!!", and The Girl couldn't help but laugh to herself a bit over how cute that was.

And so, the patdown happened - no "private screening" for this girl! The agent was very nice about the whole thing; telling The Girl exactly what she was going to do and how (using the backs of her hands). After a couple of minutes, it was through. The agent wrapped up the screening by asking The Girl to touch her insulin pump with both hands, then stick them out for the agent to swab and check. That was it! All done! The Girl was surprised at how...  tolerable that was. She even said to the agent, when turning to leave, "Thank you for making that as unweird as possible. Really, that wasn't so bad!"

* * * * *

The car had grown empty, but the two women hadn't noticed. Their excited chatter filled the space until one started looking around. This scenery wasn't familiar, and she started to panic.

"Wait... wait.", the one with the long hair said. "Did we pass over an industrial area last time?"

The one with the curly hair jumped up and looked through the window to the train tracks and warehouses below. "Oh no... I think we talked right through our stop."

"Crap!"

Already running late because of the previous shuttle bus, the two friends leapt up to look at a map. They were lucky to be misplaced by three stops, and not lost.

Lost, however, was their opportunity to make their first Congressional appointments of the day. :(

* * * * *

And those are my travel stories from JDRF Government Day weekend. Are you still awake? Okay, good. :)

DOC in DC: Part Two.

What made JDRF's Government Day event so memorable?

Dude, where do I even start with this?

I want to start with the end - our meetings with our state's Senators and Representatives. But before I get to those, I should tell you about some of the informational sessions we had with JDRF staff and researchers.

The JDRF Government Relations (GR) staff in D.C. did a great job of giving us the information we needed to be able to talk to our members of Congress. We heard from not only the GR staff, but also from Dr. Richard Insel, M.D. (Chief Scientific Officer at JDRF) and Dr. Judith E. Fradkin, M.D. (Director, Division of Diabetes, Endocrinology, and Metabolic Disease for the NIKKD at the National Institutes of Health [NIH]) about where we are in terms of research on prevention, treatment, and a cure for diabetes.

We found out interesting tidbits, like how the U.S. Department of Defense funded $20M for research into continuous glucose monitors - because the stress of war elevates the blood glucose levels of soldiers, and when your blood glucose levels rise, you don't heal as quickly.

We talked about the AP being important not just for the benefits of living healthier now with diabetes, but also because a healthy body (with tightened glycemic variations) will be more accepting of a biological cure. I hadn't thought of it in that way before - but it makes sense.

It was also brought up that the AP can benefit not only those with type 1, but those with type 2 as well. We all struggle with hyperglycemia, and the AP would help mitigate that for us all.

And then, we heard about why the Artificial Pancreas (AP) is stalling in its progress with the Food and Drug Administration (FDA). Much of what was presented was familiar to me, as I do tune in to those webcasts when I can, but they made a good point: not only will the artificial pancreas be the first of its kind in terms of that particular technology, its also a device AND a drug. Getting either one of those approved takes time, but both? It's a double-whammy of a paradigm shift.

That lag - that hesitation of the FDA to approve the AP for out-patient, real world trials - is why we were in our suits and big JDRF stickers, talking to Congress. (Seriously, loved those stickers. You could see them across the Hill, and wave frantically to your fellow JDRFers. "Heeeey! Someone I know, kinda!") A letter was sent out to all Senators and Representatives the week before we were there, urging them to co-sign a letter to the Commissioner of the FDA. This letter to the FDA asks them to "quickly and seriously consider draft guidance (effectively a research framework) submitted by JDRF and other leading clinical experts, and to keep the process moving so that these new technologies can be further tested and made available in the near future".

(We're to the point of needing to move from in-hospital clinical trials - which were very successful - to out-patient clinical trials. And we need the FDA's approval to be able to make that transition.)

The rotunda in the Longworth
 (House) office building.

Each meeting we had was a little bit different. Brian (who was the other volunteer there from the Cornhusker state, and thankfully knew his way around D.C. much better than I did) and I met with two of Nebraska's Representatives and a staff member for the third, and a staff member for one of our Senators. (Brian met with the other Senator on his own - more on that story later.) Everyone we met with was very cordial, and open to hearing what we were there to talk about. Some offices even had a JDRF photo frame out - though, maybe they knew we were coming. One Congressman in particular was so interested in the technology we were bringing up that he started asking me questions about it!

That's one thing I had forgotten in my nervousness - that listening to constituents is their job. It's easy to feel intimidated and get yourself freaked out about talking to someone in that position. You fear that you'll get there and forget your name, or what you wanted to say. You feel like you're just one small voice in a big ocean of problems and concerns that this person listens to. You wonder if your one, small voice can ever be heard above all that.

The truth is that once I got there and shook their hand, the nerves melted away, for the most part. The Politician is just another human being; The Office becomes just another room. (As the saying goes, they put their pants on one leg at at time, too.) You have their attention, and you have an army of supporters behind you (whether that be the other advocates in attendance that weekend, or the overwhelmingly wonderful number of you who followed the #JDRFGovDay tweets and lent us your encouragement and support). The hardest step is getting yourself to go do it, and now that you're there, you just talk.

And talk, I did. I talked about how living with diabetes for a quarter century doesn't make me an expert at living with it - that no amount of time can guarantee that knowledge. I talked about the costs of time and emotion that diabetes charges me. I talked about how today's technology is great, but it's not good enough. I talked about how an artificial pancreas could change my life - and wondered (out loud) what the heck I'd do with my free time, if I wasn't worrying about diabetes so much. (Pretty sure I actually used the term "diabetes brain" in one meeting - I hope they knew what I meant.) And I acknowledged that while a device automatically deciding on and controlling insulin delivery could be dangerous, living with diabetes is dangerous. And we can't afford to keep waiting.

That's what being an advocate is: speaking up when it's needed, not just when it's convenient. Having the audacity to put our voices out into the world, and to tell our own stories.

It's what we do here in the diabetes online community, and I hope it can also be what we bring out into the off-line world. Interested in signing up as a JDRF advocate? You can find more information here.

Disclosure: As always, these opinions are my own. JDRF has not asked me to blog about the Government Day event, nor have they asked me to promote their advocacy program. (Though I do volunteer on my local chapter's GR committee - so it's this thing I'm trying out.) As someone who was so proud to represent our community and cause during those four days (and always!), I'd be remiss not to recount what I learned, and how I interpreted the event. 

DOC in DC: Part One.

Let me first say that I have no idea how many "parts" this series will have. I will probably have to Tarantino things a bit, going back and forth in time. (I just imagined myself on a hoverboard - hmm. Maybe have to break out Paintbrush again soon.)

Like many of my fellow DC/DOCer's, my head is filled, perhaps beyond capacity, of thoughts and stories about this past weekend. I'm still processing what happened, downloading and compiling photos, and trying to wrap my brain around the fact that I actually met some of my state's Congressmen. (And that I also got to meet some of the d-bloggers I look up to most - and yes, they are just as awesome in person as they appear to be online! I miss you all already!)

Before I get into the stories, I wanted to make sure to say a big THANK YOU to JDRF Advocacy for putting together such an impactful weekend, and for letting me be a part of it. Honestly, before I got there I wasn't quite sure how I got invited - I sometimes feel like I'm just little ol' me (and how on earth did I end up being associated with such a fabulous group of DOCers and JDRF volunteers?) As the weekend went on, my confidence grew, and I started to see that it doesn't take someone being a "big deal" to get things done - what it takes is heart, a voice, and some courage to put those things out there into the world. We all can find those things within ourselves. We all can be advocates for ourselves, and the greater diabetes community. We all can make a difference.

Over the next several days I want to fill you all in on the sessions we had, what I learned from researchers and JDRF leaders, and what meeting a Congressman or their staff is like (I had zero experience on this going in - so if I can do it, anyone can do it!). I also want to tell you about Cherise and I getting lost/misplaced on the D.C. Metro, an episode of group #sweatbetes with Turkish Steve, and how amazing Georgetown Cupcakes are.

In the meantime, I'm sharing a few of the pictures I love from the weekend. I'll have to explain their context later. :)

I know it probably wasn't planned that way,
but my first thought when I saw this at
the end of the buffet line was,
"JDRF knows the DOC well".

Kelly K. and Sprinkles The Unicorn!

Yep, I got a side-hug from Gary Hall, Jr. (So cool to
see him there, advocating right along side the rest of us!)

Look very closely - #dsma and #dprom got a mention
on the JDRF slides!! (How awesome is that?)

Advocating for the DOC... in D.C.

Something pretty cool is about to happen.

As I mentioned before, I've been invited* to take part in JDRF's Government Day event in Washington, D.C this weekend. This is the first time I've been a part of something like this, and I'm thusly a combination of giddy, nervous, determined, and proud. And because several of my fellow diabetes bloggers and DOC members will be in attendance, the weekend is sure to include some Blunt Lancet and unicorn sightings.

This weekend isn't about me, though - this is about all of us in the diabetes community.

Let me explain.

JDRF is bringing together advocates from every chapter in the U.S., along with JDRF staff and researchers to talk about where we are, what needs to happen, and how. The weekend also includes these advocates meeting with members of Congress to build and maintain relationships with them - because when big votes for diabetes-related funding come around, we want them to remember us when they vote. 

So where does a rag-tag group of diabetes bloggers fit into this? JDRF has invited a handful of us to share some perspective on what the greater diabetes community needs from them. They're looking for our ideas, feedback, and knowledge of what people affected by type 1 diabetes are looking for from JDRF. The DOC group at this event will be doing a roundtable talk with the advocates on Sunday at 2:00pm EST. I'm excited that JDRF has been interacting more and more with the DOC, because we can learn a lot from each other.

This is where it's about you guys! We want and need you to participate in this session, so that as many voices as possible can be represented. There are a few ways you can do that:

• Submit questions via Twitter to the JDRF Advocacy staff (@JDRFAdvocacy) and find tweets from attendees by following the event's hashtag: #JDRFGovDay. (I think it's safe to assume I'll be very tweet-happy for the next four days.)
• Utilize JDRF Advocacy's Facebook page as another way to submit questions (great for those, like me, who tend to be verbose in their feedback).
• Tune into the live webcast of our roundtable discussion at the JDRF Advocacy USTREAM channel.

I'd also like to hear straight from you all: What's important to you? What should I mention to help represent what our community needs/wants most? What would you like to see JDRF do that they aren't already doing to help the diabetes community at large? Leave a note in the comments section below!

*Disclosure: JDRF is covering the costs of my travel, hotel, and a few meals for this event. I'm attending not only as a member of the DOC, but also on behalf of my local JDRF chapter. This is the first time I've ever had costs covered for me to attend something diabetes-related, and while I'm very thankful for the opportunity, the fact that JDRF is footing the bill will not affect what I write here now, or later. Meaning: my opinions are my own.