Watching Over Gotham.

"What am I doing?", my endocrinologist said to herself, out loud. "This goes against all of my training! But, it's what your numbers are telling me..."

Sounds right.

It seems like my insulin needs have never quite matched up with what's considered "standard", whether it's the ratio of daily bolus to basal insulin, the increase in basal rates while I'm sleeping (my body won't even look at insulin while I'm dreaming; it's that resistant), or the number of basal rates I'm running throughout the day (they once totaled 12 rates in one day, and it worked really well at the time).

It doesn't surprise me that my endo (whom I adore - I've only had two appointments with her and I'd already like to send her a basket of puppies and chocolate, though not in the same basket because then I'm sending her a basket of dead puppies, and what the hell kind of tangent is this) is needing to do things a bit differently to keep me in range - and you know what? So far, it's working pretty well.

But while basal rate changes help, they don't do all of the work for me. I still see myself trending down several times a day, but it sort of works out for now since pregnancy has brought me a bottomless pit for a stomach. "Oh! Cool! I can eat again." But things change sporadically, randomly, and often - much like Batman watching over his beloved Gotham, I too must remain vigilantly attentive to what's going on around (and in) me.

I'm back in super-obsessive mode, which means I'm clicking the Dexcom button every few minutes (even though I know it only updates every five) and doing a finger stick about every hour and a half - but sometimes I'll get crazy and wait TWO HOURS YOU GUYS! I haven't gone through this many lancets in... ever? My fingers are losing their patience with me swiftly.

What would be reeeeeally wonderful right about now is this:

That's the Artificial Pancreas system that Tom Brobson, JDRF National Director of Research Investment Opportunities (and star of this YouTube video detailing his experience using this thing in a real-world setting) brought along with him to a JDRF breakfast here locally on Wednesday, that I felt very lucky to be able to attend. It's not perfect - no technology is - but having a system that would look out for me and minimize the highs and lows? I'd take it in a heartbeat.

Until then, I will do my throw my Bat-darts at this ever-moving target called diabetes, in the hopes that I can hit something more often than not.

That's Just... Love.

Saturday morning was an early one, as the alarm went off at 4:30 am. Why so early? It was JDRF Walk Day, yo!

With Jess' help, we brought the You Can Do This Project to some of the hundreds of families in attendance. We spoke with kids, parents, and adults alike. We met a mother whose son had been diagnosed just three weeks ago - they were there to meet other families, and to see what insulin pumps were all about. We watched the light click on behind people's eyes when we transitioned from "people are telling me about something" to "people who know" - as soon as I'd spot a pump on someone, I was quick to gesture to my own. All of a sudden, they were much more interested in what we were saying.

It was also fun, as it always is, to have a buddy with diabetes on your team. When an adult with type 1 mentioned how difficult it was for her to battle post-breakfast highs, Jess and I clicked on our Dexcom receivers and showed her that she wasn't alone. (Oh hi, 323 mg/dL.)

We also encountered a woman at our table who was just acting... funny. Her words weren't making much sense; her eyes darted all over the place. She spoke louder than necessary, even with the crowd. A Medtronic pump was clipped to her pocket. "I should really do [a] test, but I don't have my glucometer. Left it at home", she mumbled, and we got to work: Jess quickly offered, "Do you want to use mine?", and the lady readily accepted. While Jess lanced the lady's finger, I fumbled through my bag for glucose tabs.

A 44 mg/dL flashed on the screen. "Oh. 44. That's low", said the woman; acknowledging and then immediately dismissing the information. She picked up a marker and began writing on one of our marker boards.

"Hey... why don't you eat some glucose tabs first, okay?", one of us cheerfully suggested. I thrust a vial of tabs in front of her; the top popped open and ready to go. She stuffed two tabs in her mouth and chomped away; trying to make conversation at the same time.

"Oh! These are actually good! What kind are these?" (They were GlucoLift Wildberry - I still had a sleeve of them in my purse from FFL.) Just then, her daughter (or at least someone that age that knew her) walked up, and wanted to know where to order the tabs. (Amazon, yo.) I was still sifting through my purse, trying to find more glucose for her - a bag of fruit snacks. Down they went.

Whether she started feeling better or not, we weren't sure, but she was ready to take off. "Thank you so much, you guys. Thank you. I needed to test, and you even poked my finger for me. Thank you. That's just... love. You guys are so nice. Thank you."

That pretty well summed up the feeling all morning - love.

Come Say Hi?

Again this year, I'll be working at a table at a JDRF Walk:

JDRF Walk, circa 2010

But this year marks something new - I'll be there to spread the word about You Can Do This. (!!!!!!)

It will look something like this, I'm sure.

I'll be at the Omaha JDRF Walk on August 11th (that's this Saturday - I know, short notice) - so if you're going to be there, please come say "Heeeeeeey!". Or just "Hi". Either one.

I'm looking forward to spreading the word on a local level, and I'm hoping to do that marker board thing again - this time with some snazzy new boards, since the ones used at Friends For Life were borrowed. (And these were clearance priced at Kohl's. I might have shrieked slightly when I saw them. What? IT'S WHAT I DO.)

HECK YES! PERFECT!

Will I see you there?

Hope and Acorns.

On Saturday, Aaron and I got all gussied up to attend a local JDRF Gala.

I had on purple heels I could actually walk in, a glittery handbag large enough to actually hold the things I needed to bring with me, and a folded up piece of paper with the mini-speech I had written that morning. (I like to tell myself that I work best under pressure. Or panic. One of the two.)

This is the "quick, take a picture of me before
we forget" shot. Sassy!

I was asked a few months back if I would be willing to share my story as part of this chapter's "Fund A Cure" video for the 2012 Gala. A camera crew came to our house in February and we did things like play fetch with Billy (you'll notice that he suddenly has no interest in his favorite toy once cameras are rolling), go for a walk (of course it was super windy) and I spoke about my diagnosis, finding support online, and what parts of life with diabetes have been most difficult. 

My previous impressions of Gala videos led me to be a little cautious - I wasn't interested in being portrayed in a feel-sorry-for-me, tear-jerker sort of way. I thought they did a nice job of sharing both my and another young woman's stories in a realistic but positive light. (And yes, you'll notice that I'm a huge JDRF supporter.) But, don't take my word for it - make some popcorn, grab a comfy chair and watch it for yourself.

I was also asked to say a few words (around 30 seconds to a minute) following the video's presentation. As Molly and I stood on stage, the video drew to a close and the emcee introduced us to the audience of over 400.

We received a standing ovation. I really, really didn't expect that - neither of us did. (And though I feel a little like it's boasting to even mention it, it's the first time in my life that I can recall it happening, so I kind of feel like it's okay just this once.)

I'm grateful for a lot of things from this experience: for the opportunity to bring an adult voice and story to the JDRF narrative; for the chance to work with such passionate people through the whole process; for the generous audience (they surpassed their fundraising goal for the night!) who contributed to the work of people much smarter than I.

Organizations like JDRF help to provide people like me with what I think is one of the most important things required to live well with type 1 diabetes (aside from insulin): hope. And on the days when I find some, I try to store it up like a squirrel would do with acorns for the winter. A bad day can hit at any time, and it helps me to turn it around when I have a stash of these reminders - of how far we've come, and how many people are out there working hard to end this disease.

Filling Gaps And Taking Risks.

On Sunday, I attended a JDRF Research Update Event in Omaha, Nebraska. Speakers included Linda Johnson, MPA, CLP (Senior Director of Strategic Alliances) and Dr. Sanjoy Dutta PhD (Director of Glucose Control; Treatment Division), and though some of what was covered were things I'd already learned from previous JDRF webcasts and announcements, I did pick up a few things to think about. It's also nice to be able to talk to folks in person, so there's that. :)

Before I get into the recap, I want to say that I wish more people would have/could have attended. It's not very often that a Midwest city like Omaha gets to have people of this caliber to come speak. I wish the event could have been better promoted (and with much more notice given), as I felt the 40 or so of us that attended were not nearly as many who would have, had they know about this (and had they realized how unique this opportunity was). Attendance was low, and for that, I'm a bit sad.

Anyway. *cough* Onto the recap.

Linda Johnson spoke about the alliances JDRF has forged with governments, with other disease advocacy organizations, and with industry. She acknowledged that this is a relatively new direction for JDRF (she dated the beginning of such alliances as 2005), and emphasized that these partnerships and agreements can help us more expediently reach better treatments and eventually a cure. Alliances not only can provide a way to pool resources (monetary, knowledge and capabilities) to accomplish what one organization alone may not, they also help minimize unnecessary duplication in the areas of research and development.

She mentioned partnering with the Canadian government to secure funding for research ("Hey, if they want to give us $20M to do clinical trials there, we're not turning that down!"), and spent a great deal of her time speaking about the various industry alliances JDRF has entered into.

(I should also note that she made sure to point out that while many have expressed concern over the money JDRF puts towards these ventures, in the last fiscal year [FY11], just 10% of research funding when to industry partnerships. To me, that's a rather small amount, considering what it COULD be.)

There was talk of Merck/SmartCells, Amylin, Lilly and the University of Geneva research lab, Selecta BioSciences (whose focus, prior to JDRF's influence, had been on nicotine control) and iCo (who is working on repurposing existing meds for the treatment of diabetic macular edema). Linda pointed out that industry partnerships are critical to JDRF's mission: "You reach a point where you can only take your research so far, and need an industry partner to take things to market". (For more on those alliances, please click on those hyperlinks.)

Next up: Dr. Dutta. (I'm also going to say here that I think JDRF has done a great job of putting researchers who are able to put things in understandable terms in touch with the diabetes community. It can't be easy to translate things so eloquently, but people like Dr. Dutta are able to do just that.)

The work Dr. Dutta is involved in (treatment therapies) has two goals: to restore glucose regulation (think Artificial Pancreas [AP] and Glucose-Responsive Insulins [GRI]), and to discover, develop and deliver therapeutics that prevent, reverse and treat complications in all stages and all individuals with type 1. He talked a bit about the AP, and the recent news that patients in Europe have, for the first time ever, successfully used the AP in a real-world setting - that's big news!

He addressed some of the "gaps" that need to be filled when it comes to the physiology of a person with type 1 diabetes. Insulin production isn't the only thing "broken" - the production (and body's decisions for appropriate use) of hormones like glucagon, amylin and leptin are also affected. In a person with type 1, glucagon is present in the "wrong place at the wrong time" - meaning that it's missing when we're low and present when we're high. The fix here can't be to simply shut off glucagon production; a balance of suppressing and activating is needed.

Insulin delivery was another key topic. Dr. Dutta pointed out that current insulin delivery methods, which have insulin arriving in the body subcutaneously (meaning, under the skin), don't make a lot of sense. Think about it - in a healthy human body, does insulin get produced under the skin? (Nope - pancreas.) Does it do it's work under the skin? (Nope - it has to get to the blood stream.) Intra-dermal delivery techniques (which would engage more blood vessels) would also eliminate some of the more common complaints we insulin pump users have, as no tubing would mean no occlusions, kinks, etc.

Graph of how insulin works in a
non-diabetic person (that's in green)
and someone administering a
current insulin (in pink). Notice
how we're missing that big spike
of insulin at the start?

Another idea along those lines would be what's called an InsuPatch. Have you ever taken insulin and soon after gotten in a hot shower or hot tub? Insulin works REALLY fast then, right? Well, same idea - put a bandaid-like warming device around pump infusion sites. (I had to laugh when Dr. Dutta was explaining this one - "This is so simple; we looked at each other and said, 'Why didn't we think of this before??'".)

And lastly, the "high risk" project: glucose-responsive insulin (GRI). What needs to get accomplished here is that GRI needs to mimic physiology (deliver insulin when and where its needed), be device-free (limiting fingersticks, replacing insulin pumps, and reducing human intervention), and also address the critical gaps in type 1 treatment. Basically? It needs to reduce the burden of managing the disease, big time. (That... yeah. That would be nice.)

You may already be aware, but JDRF introduced a prize incentive related to GRI as a way to engage a new audience of experts. Dr. Dutta explained that while offering a prize in this arena is unorthodox, it was necessary: "If this were easy to develop, we'd have it already. People have spent time and effort trying to develop GRI but keep failing at it. We need people outside of the "usual suspects", and offering this prize can help us engage with those people."

Dr. Dutta left us with these thoughts: if something works (treatment-wise), jump on it. Your best defensive strategy is knowledge, so do your research. You can't expect your medical team to know about everything that's out there, so be an advocate for your own health by being engaged in learning about your disease.

And in summary: all of these technologies may not be suitable for each patient. We all have our own unique pathology, and we hope to get to a position where we can pick and choose from these advanced treatments, so that everyone can do what works best for them as individuals.

Thanks again to Linda Johnson and Dr. Sanjoy Dutta for spending a little bit of time with us here in the Cornhusker state. I hope they come back again soon.

Disclosure: JDRF did not specifically ask me to attend this event or talk/write about it. I was not compensated for my time there or for writing this recap. I am just super nerdy and like to learn (and then share) things like this. As per uzh, my opinions (and translation/recall of events) are my own.

T1Day.

It's November 1st, which the JDRF is now proclaiming as "T1Day". We're asked, as a community of people living with diabetes, to "raise awareness about type 1 diabetes on this day and throughout the month of November".

It also seems to mark a turning point in how JDRF is engaging the adult type 1 audience, as you'll surmise from the cheeky (and perhaps, to some, over the edge) videos they've put out recently.






As someone who is an adult (and I use that term loosely) with type 1, I do appreciate JDRF's efforts to engage the adult population - adults make up around 85% of the type 1 population, after all. It's a fairly large shift to now see adults with type 1 in their advertising and promotion.

I also appreciate their attempts to educate the public about the different types of diabetes.

This new strategy is unorthodox and frankly, a little bit shocking - how many disease advocacy groups can you think of who have asked you to "give the finger" to the cause?

I'm not sure this message hits the nail on the head, but you can certainly make an argument for its effectiveness in grabbing people's attention. It feels a lot like breast cancer marketing's use of "I Heart Boobies", in that it may not send the most PC message, but it certainly breaks through the clutter (to throw some marketing slang into this thang).

(Sidenote: The appropriateness and motive behind the IHB campaign is enough fodder for an entirely different post, but seeing as this is Diabetes Awareness Month, I'm trying to stay on topic.)

What's your take on T1Day, and JDRF's "Meg" campaign? Will you be giving diabetes "the finger"?

Disclosure: JDRF asked if they could send me a press kit a few days ahead of T1Day, which included some advance information about T1Day and other changes happening at JDRF. They also sent me one of the foam fingers from the video, but I'm not quite sure I want to go there. :)

Other thing you should know: JDRF is holding a press conference tomorrow. According to the email I got: "Members of Congress, diabetes clinicians and people with type 1 diabetes will hold a press conference on Wednesday, November 2nd at 2:30pm on Capitol Hill to urge the FDA to issue clear and reasonable guidance on the artificial pancreas and make an exciting announcement about the artificial pancreas petition.  We’ll be live tweeting from the press conference - login to our Twitter accounts to follow the hashtag #AP100k."

Research Update Event.

I received this in my inbox last week, and I'm very much planning to attend this event. It's not often that JDRF does a research update in the Midwest (actually, I'm not aware that they've ever done one around here before), so this is a pretty rare opportunity. I'm totally geeking out about it.

If you're in the area and plan to attend, let me know! I'm always down for a meet-up. :)  (Also, let's jam-pack this place with people so that JDRF will be encouraged to bring people like Dr. Dutta to this part of the country again!)

Giant Chew Toy, It Is Not.

Bullet points are my friends.

• There's nothing quite like getting a haircut and blowdry at a salon to make me feel like I'm living in a hair commercial. I might have indulgently (and obnoxiously?) swung my hair around just a wee bit at the grocery store before I headed home on Saturday.
• The diabetes gods will always ensure that no matter where I put a new infusion site, Aaron will snag it while hugging me. And that I will reflexively respond, "It's okay!!", while trying to mask the wincing.
• The JDRF had a live webcast last week on glucose-responsive (or "smart", as it's otherwise known) insulin - if you missed it, you can watch the archived version here.
• Several awesome people with diabetes will be convening this coming weekend in Kansas City (there's a NYC meet-up, too), and I am beyond excited to see everyone - and meet some face-to-face for the first time! Also, I will get to prove that my husband is a real person, as this is only the second DOC meetup he's been able to attend with me. ;)  I'll be tweeting as much as I can remember to over the weekend. (Sometimes it's hard to remember - I'd rather live the moment and talk about it later, you know?)
• Billy - your brand new dog bed is not a giant chew toy. STOP IT. (P.S. Thanks for the snuggles this morning; you make Mondays just that much more bearable. Or dogable. You're not a bear. Whatever.)

The Post Where I Shamelessly Ask For Donations.

The air is cooling (sort of), the sun keeps setting a little bit earlier each night, and college football has arrived.

This can only mean one thing (aside from the first signals of autumn): it's once again Walk season.

I'll be participating in my local JDRF Walk to Cure Diabetes this Sunday with Aaron, Billy and my family. As much as asking for money makes me uncomfortable, it's for a good cause (and people can't help you if they don't know you're looking for it), so here's my one post a year where I ask for donations. I would super duper really appreciate any help I can get to achieve my personal fundraising goal of $500. If you're feeling so inclined, visit my Walk page here.

And if donating isn't in the cards (I completely understand that - all of the fundraising efforts going on right now can make your head spin), an encouraging text or tweet the day of the Walk (we take off at 12:30pm CST) would be appreciated, too. :)

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. :)

Type 1 Talk: Relaunched and Loaded.

Remember Type 1 Talk? The Juvenile Diabetes Research Foundation created this project last fall to organize local meet-ups on World Diabetes Day. Type 1 Talk is an events tool on Facebook that allows users to create or search for local type 1 related events, aiming to get those of us online to connect with others in our community offline.

Type 1 Talk has been relaunched, and can now be used to post events on any day of the year! For someone like myself, who doesn't know many other PWDs locally, this could be a great way to reach out and find people to connect with (in person!) on a regular basis.

And along with this relaunch comes a pretty cool incentive to utilize it - like, right now.

You could win a trip to JDRF Government Day 2012.

Wait, that announcement didn't do it justice...

YOU COULD WIN A TRIP TO JDRF GOVERNMENT DAY 2012!!

Here's the details on how to get entered in the drawing, straight from the email I got last night from JDRF Advocacy:

To help celebrate the re-launch of the new and improved Type 1 Talk, we're offering up a trip to Government Day.  Anyone who posts and holds an event in April or May will be entered into a random drawing for a trip to Government Day in 2012 (typically scheduled for early March.)  To be eligible for the prize, you must post photos of your April/May event on our Type 1 Talk fan page and complete the post-event host survey.  All photos and surveys must be submitted before the drawing takes place on June 7th. 

So, let's recap: you'll get to meet and hang out with other PWDs in your area, have your event searchable by any PWD who is Facebook-savvy (hi, free promotion!), AND get entered to win a free trip to Washington D.C. to meet with your members of Congress and take part in Government Day next year?

What more could a diabetes advocate ask for?

* * * * *

Disclosure: JDRF did not ask me to write about Type 1 Talk - but I did, because that's how I roll. The email I received with the information on the relaunch (and prize) was a result of being signed up as a JDRF Advocate - you can join in here!

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.

Outsmarting Smart Insulin?

I tuned into yesterday's JDRF Advocacy webcast with Dr. Aaron Kowalski to find out some more about what's going on with the Artificial Pancreas Project. (If you didn't have a chance to tune in, the recorded version can be found here.)

Not drawn to scale.
Also, not drawn by me.

I'm a fan of Dr. Kowalski. He's a smart and engaging presenter with the perfect storm of expertise and experience - because he is a scientist AND a person living with type 1. (He also appears to be an avid Diet Coke drinker - bonus points.) Who better to have on our side?

Listening to, as well as participating in, these webcasts helps me as someone without an extensive science background understand my own disease a bit better (and reassures me that I'm pronouncing words like "interstitial" correctly). It also gives me (what feels like) an insider's look at what JDRF is working on, and what they need volunteers (like myself) to do to help. These webcasts help put a face and voice to a huge organization. It endears them to me, frankly. Seeing that kind of transparency and accessibility is refreshing.

Though much of what was discussed were topics I'm already fairly familiar with - clinical trials for the AP, smart insulin, etc. - it did get me thinking about a few things. And so, as I'm want to do, here's my (short) feedback about what was discussed.

• The idea of an AP that incorporates a CGM, insulin pump, and glucagon pump seems to make the most sense to me. However, that brings up some real-world concerns in my mind, like "Aren't I going to run out of skin real estate with that many sites to rotate around?" And if I'm worried about that problem as a fully-grown adult, it is sure to be even more of an issue for small children.
• As someone who tends to see their BG plummet during certain types of exercise, the idea of "smart insulin" concerns me. If you're not familiar with the concept of what "smart insulin" is, take a look here. Essentially, it's an insulin that could both detect and respond to elevated glucose levels. So here's my concern: there are times when I want my blood sugar to be elevated. Like before I walk that marathon in May. Exercise + Insulin On Board usually = Big Trouble. Which would mean that Exercise + Insulin That Dispenses Itself Without Knowledge That I Don't Need It = Yikers. I'd need a way to outsmart the "smart" insulin.
• Dr. Kowalski touched on that concern that many of us have - that CGMs can sometimes be inconsistent and inaccurate, and it's hard to trust that having one hooked up to an insulin pump would be a good thing. He made a great point that I hadn't really thought of before: because these monitors do not test blood, they can't be expected to exactly match blood testing results. Just think - what if, instead of blood glucose monitors, we had been using interstitial fluid glucose monitors this whole time, and then they came up with Continuous BLOOD Glucose monitors? Then we'd think that blood testing was "way off". It's not realistic to think of the two technologies in apple-to-apple terms. When I see the Dexcom being accurate most of the time, I start to think that it should be that way all of the time - when, really, it's supposed to be there just for trending information. I keep forgetting that.

***Disclosure: As in the past, JDRF has not asked me to blog about their webcasts. They did ask for any follow-up questions and thoughts viewers might have had via Twitter, but I didn't think I could fit all of this into 140 characters.  :)

Ketchup.

No, not that kind.

I'm a fan of tying up loose ends. There are posts I've written here where I've said "...but that's for another post", or "more on that later", but then I never really go back and address whatever "it" was. I know that, as a d-blog reader myself, I appreciate when a storyline continues and updates are provided after something happens. I care about the people I read about, you know? I want to know what happens next!

So, in that spirit, this is a post where I attempt to catch up on some of those procrastinated topics.

• After writing Feeling Stab-y, I've decided that I need to try - just try, then decide if I want to switch to - using an automatic inserter for a pump site. Just to see what happens. I'd like to do this sometime in the next few months.
• New Hotness is working well (Sorry, Elle.) I did a 40-minute workout while watching House on Monday night that left me wondering, "Why am I not ALWAYS doing a workout while watching TV? That didn't suck as much as I expected it to!"
• I sneakily mentioned in this post my latest A1C result, which was a 6.9. I was pretty disappointed in myself, but it was a number that honestly didn't surprise me. Hearing it said out loud by my doctor, though, stung a bit. I know what I need to do to get back down to where I was, and I'm feeling motivated enough to get there again.
• I did order a new transmitter for my Dexcom, just in case. I also got Jim some new jackets - two of mine started tearing recently, so he's going to be all kinds of spiffy now.
• I STILL haven't downloaded my pump or Dexcom.
• I'd like to do another vlog, but seem to have run out of topics. If you have any suggestions, let me know!
• I've got a bottle and a half left of that creamer. Maybe I should have bought a dozen? Doesn't seem so crazy, now...
• This sinus infection put a kink in my intentions of half-marathon training. I've decided that I'm not going to try to run this one - that's not realistic for me, right now - but I can certainly walk it. Also, I use the word "training" loosely, because I am in no way organized or professional in my approach. An unlikely athlete, I am.
• And finally, in Deciding On Disclosure, I mentioned some "recent happenings" that I'm excited about. The biggest one of those is that I am going to be part of JDRF's Government Day event in Washington D.C. later this month. JDRF recently announced that it intends to expand its reach, support and focus to include the adult type 1 population, and as an adult type 1 myself, I couldn't be more excited about that. To that end, JDRF has invited a handful of adults with type 1 who are active in the DOC (diabetes online community) to participate in this event alongside some of their best advocates from each local chapter, and I am totally giddy about being included in that group! You can find some more information on the event here, and it looks like there will some live streaming of our blogger roundtable presentation, too, if you'd like to participate. (You can submit questions via Twitter and Facebook - look to the JDRF Advocacy blog for upcoming details on this.) You guys, I am so, so excited about this. And it's not just that I finally get to meet some of my favorite DOCers in person (YAY!) - I'm hoping this event not only helps JDRF find some ways to further engage with the adult type 1 community (because these two groups can do a lot for each other), and also helps us come up with some ways to reach those who haven't found our community yet.

So there you have it. Ketchup. Catch up. Whatever. :)