Wednesday, November 30, 2011

Rinse and Repeat

Bolus. Eat. BG Monitoring to follow.

Rinse & Repeat.

Just like I have for a lot of years.

Simply enough, right?

Not so much for me, apparently. At least not lately.

My newest habit appears to be forgetting at least one of those two important parts, totally throwing off the third leg of that three-part routine.

The monitoring part doesn’t exactly turn out the way it should, thanks to the lack of one of those key influences that makes the numbers go up and down.

Usually, it’s the first.

Taking insulin for breakfast before I head out of the house in the morning, and then walking out the door and forgetting to grab the toast, pastry or mini-muffins I’ve already bloused for.

Bolusing ahead of time for that morning trip to Starbucks and then, upon seeing a long time-stealing line at the drive-in and being too lazy to go inside, I cancel the plan despite.

Planning to make up for my earlier forgetfulness by grabbing a vending machine snack at work, yet realizing I have no spare chance or dollar bills on hand. And then totally getting side-tracked once I make it to my desk.

And so many more examples.

Of course, sometimes it’s the second carb-consuming part.

The whole carb calculation and eating food” part plays out fine, but it’s the forgetting to actually push the pump buttons and make sure the insulin is delivered that is the issue. And then not realizing there’s been a dose until the high BG hours later.

We’re not talking rocket science or memorizing the periodic table here… it’s simple cause and effect (what’s with the science blog talk…???). Should be too tough, yet it’s a common occurrence in my own D-Live.

And probably many others.

I often read posts and hear parents of Children With Diabetes come down on themselves for forgetting in one of those two ways and then feeling all guilty. Like they’re the “worst parents in the world” and it’s like some crime they’ve committed.

Hey, it happens. To us all. No matter the age. So, CWD ‘rents: It’s no big deal. You haven’t lost your superhero-ness. You still rule. (as I reassure myself of this simultaneously).

So are the days of our D-Lives.

Now, I’m off to check my CGM and meter to see if I’ve managed to miss a bolus or carb consumption any time recently…

Rinsing & Repeating.

Monday, November 28, 2011

Mountain Peaks and Ski Slopes

I’ve never been a fan of skiing.

Cold weather isn’t my favorite, and I have no desire to climb toward the sky and then pretend I’m a snowball and plummet down a hill.

But the body apparently doesn’t agree with the mind. Or maybe my CGM didn’t get the memo.

It seems that my new Dexcom CGM (aka Johnny 5) is a fast fan of the ski slopes and mountainous terrain, evidenced by these snapshots from a recent 24-hour period.

Made it up to the very Highest peaks.

Broader Mountain View

Jumping Off The Mountain Edge

Time to ski down the slope...

A "smooth" path ahead, at least.

And J5 isn't lying. Well, at least not most of the time. About the trends.

The One Touch meter confirms it: there’s some internal body action going on, in the mountain-jumping and slope-riding sense. Apparently, that must mean my opposition to skiing is in the mind alone. The body and BGs don’t seem to agree, and are hitting the slopes every chance they get.

They appear to climb up High to get some kind of sugar-rush of just being up there. Then, my BGs dive down toward the ground all too quickly – sometimes not even telling me they’re stepping off the edge for the free fall.

A little off, but dipping down...

This usually happens in the evenings and night times, but periodically near the lunch-hour. They seem to cruise along at a safe and steady pace during the daytime hours, plotting the next mountain climbing and ski slope adventure.

Luckily, I’ve been able to catch myself before hitting the ground at full force – thanks to J5 and my other D-Management tools. Maybe, in a metaphoric sense, those gadgets and devices are like skis, equipping me with some ability to navigate the Ups and Downs and magically dodge the trees and obstacles that come flying toward me on the ride down.

Hmm. This can’t be luck. Maybe, there’s something else going on here. 

(Looks down at feet to see if there are giant test strips strapped to my feet. Nothing there, but  what is that there on the floor near my shoe...????)

Could it be? A little mini ski….!?!?!?)

Maybe I'm a skier after all.

Saturday, November 26, 2011

Let's Go Blue

Every Friday in November was devoted to wearing Blue.

A color meant for advocating the diabetes message and spreading awareness.

We had blue circles, clothes, wristbands, lighting, and everything you might think of.

So, with that logic in mind and continuing the blue-streak... How is it that there are actually people in the world who ARE NOT fans of the University of Michigan??? You know, the team that has the awesome chant "Let's Go Blue!"

Seriously. Everyone in the Diabetes Community should be Michigan fans. I think it's pretty clear.

Don't ya think?

Yep. Especially after Saturday when the Wolverines finally won The Game (at the Big House) for the first time since 2003.

C'mon. You know you wanna be a Wolverine fan.. just say it: "Let's Go Blue." See, you're already halfway there.

(wink and smile)


Tuesday, November 22, 2011

Introducing Johnny Five

I have a Dexcom!

Yes, I'm now sporting my own little oval Continuous Glucose Monitor.

With that, I introduce you to my new friend who's taken on the name Johnny Five.

Yes, I name my D-devices - because if I must wear them with me all the time, then I might as well make it as fun as possible. This particular name comes from the fact that I'm an 80s movie fanatic and the Short Circuit movies are totally bolus-worth.

This isn't my first round at the Dexcom rodeo - I'd done a trial-test for a few weeks back in early 2010 and liked what I saw. Trial-tested the Navigator for a few days before that and then earlier this year used a loaner Minimed 523 for a few months before making a decision that the Dexcom could be a part of my life. There's pros and cons about each, and I say this one is better than nothing... so here we are on the grand ole CGM ride together.

Wearing Blue!!!
J5 arrived by UPS this past week, just in time for Blue Friday where we connected and posed for some photos. A full day at the office, then we went to a D-Camp gala on Friday night and had an "interesting" Low experience that evening - one that @TypeSuzi has already blogged about from her perspective.

Together with our friendly Minimed Paradigm 723 ("The Don of Rage Bolusing"), J5 and Crew are doing fantastical so far.

Mr. Johnny Five rests on my belt-line in a black leather case most of the day, and then when we get home J5 usually lounges on a nearby table or in my pocket before bedtime - when he strips off his case and sleeps on the nightstand. Ready to vibrate should I reach the higher-set level in the 200s.

Well, J5 caught the drop...
We are still on Sensor #1 and there's nothing to complain about. Trends are being caught, accuracy isn't all too bad most of the time, and overall I'm feeling more accountable in my D-Management and trying to not upset J5 and put him on a glucoaster ride. He hasn't had many ???s where he's basically said, "Malfunction. Need input." Nope, that's only happened once after I was cocooned in my bedspread and cutting off the transmitter signal.

So far, so good.

Hopefully, J5 can help me stay on track and get back to where I need to be and not dreading the Endo visit that I've been avoiding for way too long. Here's to a new day, with more input and a lower A1c down the road.

Tuesday, November 15, 2011

A Glimpse Into My WDD 2011

The Indianapolis-version of World Diabetes Day on November 14, 2011.

My day, in blood sugar readings from start to finish: 352, 116, 65, 103, 154, 144, 143, 107

And then there was everything else, a few moments captured by camera-phone snapshot.

At the #adainwdd11 event in Indy

The Lilly Fountain, colored (aqua) blue.
Indy's Soldiers & Sailors Monument...
... lit up in blue - for Diabetes. NOT for the Colts.

Hanging with Charlie Kimball.

The Indy Blues Brothers of Diabetes??



Carb counts listed (each cupcake = 36g)!!!

It was a good day, indeed.

There was much advocacy. And just as much fun.

Now, it's time to let some of the blue soak out of the head before getting at the bigger lessons of this WDD 2011...

Friday, November 11, 2011

Boldly Blue

We’re in the final days of the Big Blue Test, and we haven’t yet hit our goal of 8,000 people participating!

So, we need to get on that.

If you aren’t familiar, here’s the promo video below and some basic background can be found online at the Big Blue Test site.

Originally, I’d planned to participate every day between Nov. 1 and Nov. 14.

But I slacked and dropped the ball, and have only done a two-test and exercise routine a handful of times since Diabetes Awareness Month began.

Generally, my results haven’t changed much. A couple have gone down some, a couple have gone up.

Two tests stand out in my mind.

- On Sunday, Nov. 6, a Big Blue Test happened in downtown Indianapolis. Kim and her husband were in town from Nebraska for a friend’s wedding, and so Suzi and I along with Cherise and her daughter gathered in downtown Indy for brunch and to hangout. After eating, we tested outside the restaurant and then walked Monument Circle for about 15 minutes before testing again. Cherise captured some video, more video, even more video, and the post-exercise BG results on her Flip. (For the record: I was the only one whose numbers went up.) But at least we had fun and participated together!!

It doesn't say No #BigBlueTest
- On Thursday, Nov. 10, I took to the streets of Indy and ventured back to Monument Circle for my exercise. That meant jogging up and down the two dozen + steps for almost 20 minutes. Now, I don’t trust the change because I had a correction in my system from about an hour earlier… but the results I entered were 228 pre-jog and then 140 post-exercise. BONUS: a Monument security woman decided I apparently looked suspicious hanging around and jogging up and down the steps, and hassled me about loitering. A simple explanation cleared it up, but the whole notion of this being “loitering” just blew my mind. (Me to Security Lady: “No, actually I’m doing the Big Blue Test.” Her initial response: A blank stare.) I walked away. And then I went back and did the same thing on Friday.
    Those are the most memorable experiences so far, but I believe this final weekend and the World Diabetes Day festivities may bring even more creativity and awesomeness – here and worldwide!

    As of early Friday afternoon, 2,700 people had participated – 1,817 living with diabetes, and 881 not living with diabetes.

    We need to boost our numbers over the weekend and as much as possible on World Diabetes Day on Monday!!!

    I hadn't advertised or promoted this through my work much, but did that early on Friday and got a great response from my co-workers - some asking questions and saying they'd not only participate but spread word to those they know!

    Even more than that, we now have some last-minute creative incentive to add to the mix of awesomeness that’s been going on out there in the Diabetes Community….

    The other day, I was Twitter-taunting Todd Siesky who is PR manager at Roche Diagnostics – the main supporter and contributor behind the Big Blue Test. I proclaimed randomly that he should dye his hair blue. His response: “Such action could possible cause Earth to cease rotation...”

    But that following morning, an email found its way to my Inbox saying that Todd had an idea, and that maybe this could be used as a creative motivator to get more participants in the Big Blue Test. A few more emails and the plan was born: If we don’t get to 7,000 participants by Noon on Monday, then Todd/Rob Mueller/and Manny Hernandez WON’T dye our hair BLUE or wear a wig and make crazy videos about it.

    Manny has even done a little video explaining this "Blue Hair Challenge" that the Accu-check team is on board with! So that’s some additional motivation to participate right there. (I’ve also been informed that I’m not able to get past participating in this whole blue-hair experiment, either… Oh boy.)

    And by extension, I believe this may just add to the bag of fun that so many in the Diabetes Online Community are dying their hair blue. While this could be scary, we hope it’s somehow fun and motivational. And an awareness-builder to just spark conversation and advocacy from all those we may come in contact with during our day on Monday.

    Oh, and WEAR BLUE!!!!

    So that's it. The things we do in the name of Diabetes Awareness…

    Thursday, November 10, 2011

    One Promise Made

    Just like last year, I'm participating in the Promise To Remember Me Campaign and meeting with my area's elected leaders in Congress to discuss diabetes.

    On Monday, a group of eight advocates came together to meet with Rep. Todd Rokita, a Republican congressman who's been in office for less than a year after winning in November 2010. In total, we had 130+ years of Type 1 experience either present or represented in the room.

    Our group included three Adult Type 1s - myself, fellow DOCer Jeff Neitzel who was diagnosed 27 years ago at age 13, and another man diagnosed 26 years ago at age 14. Jeff's mom was also there, representing Jeff's sister who was diagnosed almost 40 years ago. We also had a grandmother, a mom, and a family whose 6-year old daughter was diagnosed at 16 months old.

    See me there, in the back 4th from left... WEARING BLUE!!!!
    Being a freshman lawmaker, Rokita hadn't before heard the JDRF pitch and wasn't familiar with the group. So, he got a brief intro of the history and mission. Then there was an update on the current status of the Artificial Pancreas and efforts to obtain guidance for outpatient clinical trials. Rokita asked some basic questions about the JDRF and its research funding, saying at one point he'd like to see more private sector funding of this research, and he also wanted to know about the number of people worldwide with Type 1 and what research has shown us to date about the causes and genetics.

    We then went around the table and everyone described some their day-to-day struggles with type 1 diabetes, particularly in dealing with Lows. One mom told about her teenage daughter's Low earlier that day that meant she didn't feel up to attending the meeting. Another mom talked about her daughter's anxiety and night-time Lows. We shared some stories about the costs of supplies and insurance, how we don't have the ability to get some great help because of regulatory delays, and how we are trying to live successfully on the road to a cure.

    At the end of our 30-minute discussion, the congressman addressed the three "asks" that we'd pitched: 1.) Joining the informational Diabetes Caucus on the House side; 2.) Putting focus on the FDA and its regulatory process in order to make sure diabetes technology, such as the artificial pancreas, is receiving adequate, timely, and effective review; 3.) Continued government funding for Type 1 research through the NIH.

    Rokita made no promises about future research funding through the NIH, but his fiscally conservative and recent-election steam may dictate how he comes down on that. He told us point-blank that wouldn't join the House Diabetes Caucus as some of his colleagues in the state have, because so many of these informational caucuses exist and he’s only joined a select few. But on the third point, Rokita did promise to focus attention on the FDA regulatory process because he’s concerned about that issue and has heard from other constituents outside of the Diabetes Community that it’s a problem. He agreed to speak with FDA Commissioner Hamburg about the guidance document.

    So, there's that. That third component - the FDA regulatory process - is the most pressing concern and what needs the most attention, so I count this meeting a win. The rest can get more attention down the road, but the most time-sensitive and significant issue appears to be getting Rokita's attention.

    One out of three... Not bad. We can work on the remaining two "asks" down the road. There's time.

    Hopefully, future Promise meetings will go just as well here in Indiana and I hope others are getting that kind of feedback and support from their elected leaders. The JDRF Advocacy arm is counting up the meetings nationwide, and as of my writing this at the end of Wednesday there have already been 235 meetings scheduled or held throughout the country. That means we only need 197 more to reach the goal of 432 by the year's end! You can find out more information about meetings or involvement in the Promise Campaign here.

    Wednesday, November 9, 2011

    Winds of Change

    A building is nestled at the heart of the city.

    Driving into town, you see it standing there taller than others on the skyline.

    Tall, strong, proud, confident, capable.

    Even if it would rather blend in and not be noticed.

    On its face, you can’t tell how the building feels inside.

    One moment is bright, happy, radiated by sunlight.

    Next it’s dim, depressed, gloomy as clouds above darken the view.

    Every moment changes, as the wind blows and the clouds pass by overhead.

    Hope with the sunshine, depression with the clouds. The two become one.

    Soon, the clouded-view can't be escaped even when the sky is blue and the sun is everywhere.

    Below, traffic moves on without noticing the shifting clouds above. Noise continues, traffic lights change, life moves on.

    Even as the wind blows and the clouds dance on.

    You may see a building standing tall. Strong. Sturdy. Withstanding the wind, even with the clouds occasionally interfering. But the wind is ever-present on the building’s face, in the soul.

    Only those who are inside the building know that it shakes and tremors, and just wants to crumble. Yet, the building tries to hide it's true feelings out of fear of inadequacy, rejection, shame.

    Someday, it may fall. Unless the structure's reinforced.

    Where's the breaking point? No one knows. Not even the building.

    It just goes on, each day. Enduring the wind, the clouds, the traffic passing by.

    Only time will tell if the building has what it takes to withstand the winds of change.

    Monday, November 7, 2011

    Fighting for One

    The JDRF ran an ad in the New York Times and Wall Street Post on November 1, marking the start of Diabetes Awareness month and the push for more general public awareness about the FDA regulatory delays impacting our D-Lives.

    As many reading this probably know, the ad said that one in twenty people with Type 1 will die from a low blood sugar. (YIKES!!!)

    The JDRF ad, featuring Piper, age 8.
    That 1:20 stat caught many off guard and generated a mixed response from those in our Diabetes Community, some agreeing with the point of the ad and some questioning the accuracy and source of that information as well as the overall intent of it.

    In response, the JDRF offered a Q&A that cited several studies ranging from recent years and dating back decades. A forum discussion began, and then another, with Mr. Artificial Pancreas Aaron Kowalski (a longtime Type 1 himself) responding about the evidence behind the stat - that it comes from the cited data and a ratio describing the chances Type 1s face of possibly dying from a Low during a lifetime.

    Much of it made sense and at first blush the cited data seemed to justify the advertisement. But something about it troubled me... There's some concern the 1:20 ratio is based on outdated, pre-1993 data when D-Management was much different. That the stat isn't accurate, or it's exaggerated and more accurately an "apples to oranges" comparison of information. Some believe the number is conservative, because we really don't know how many death-causing-Lows occur and the number is probably very under-reported in just the U.S. alone.

    Maybe I just don't get it, because I'm not a numbers guy or a scientist. UPDATE: I did some basic calculating one night recently based on the studies cited by the JDRF in using this stat, and thought I proved to myself that the number wasn't reflective of reality. As it turned out, some misplaced decimal points and bad math doomed my math... (told you I was mathematically-challenged.) 

    Whatever. This isn't about the stat, really. It's about the reality that people die from these Lows way too often. That is a scary reality that those outside our Diabetes Community don't truly get.

    THAT is why we need to do whatever we can to cut these blood sugar swings that lead to Highs and Lows. If we can't cure diabetes now, we need a way to curb these dangerous situations in the meantime.

    No, this is not about the stat and it's accuracy, even though that's an issue connected to this and one that spawns a different discussion - about whether any statistical manipulation happens in these types of efforts and overall whether the end justifies the means. I don't pretend to know the answer to that, but do think there's legitimate arguments and concerns on both sides of the discussion.

    To me, it's about doing what's necessary to play this game and get needed technology for our Diabetes Community. And to do what's needed, we need BOLD, STARTLING, and TO THE POINT:

    Kids die. Adults die. All too often. And instead of bickering about the numbers reflecting the "actual" amount of deaths, we should be focusing on preventing any death that is preventable. Whether it's one, 20, or many hundreds and thousands of people. 

    Right now, we as a United States are failing to do that. We're behind the eight-ball, when other countries are using a piece of technology to save lives - studies and personal stories prove that. Technology is technology and isn't perfect, just as we aren't, but it helps and can prove life-saving.

    The FDA is one of the big road blocks to making this happen. Not the only one, but a hurdle we have the most ability to influence and guide through this process successfully.

    Simply, we need this public awareness in order to motivate our lawmakers and FDA regulators that this is important. They need to listen to our patient voices, because we're telling them about what OUR real concerns are and what matters to us most. We are the ones saying that what the FDA is asking about, what they seem to expect before offering approval, isn't what we People With Diabetes are thinking is most important.

    We need this type of technology in order to save lives NOW, but also because of the potential it has to help us learn more about the bigger puzzle of diabetes. That knowledge helps us move closer to a real cure. Everything fits together, and as of right now the U.S. is behind where it could and should be in getting this technology out there for our benefit.

    Whatever the rate-of-death-from-Lows may actually be, I know it’s too high and even the possibility of this happening is enough to warrant this kind of bold advertising. In my honest opinion. I've been lucky enough in my lifetime to not become one of those who've succumbed to a Low. God knows I’ve been close, on the edge of slipping into that ravine many times. But I've been pulled back, thanks to my own actions or those of my Loving and Supporting Spouse, my parents, and paramedics. Fortunately, I'm one of those 19 who have not died from a Low - and while that makes me happy to some degree, it makes me even sadder because it's not fair to know that there's even one person who hasn't been so lucky.

    While I don't see eye to eye with the JDRF in some areas and disagree with the recent marketing push for a new logo, I see this newspaper ad effort as a positive and important one. So, that makes me happy to support this organization on this front.

    All of us, and everyone out there in the world, can learn more about the Artificial Pancreas Project and can take action by signing a petition to encourage the FDA to move on this and prevent even more delay. We can make a difference, and it's important we do so in order to stop these deaths-by-Low Blood Sugar from happening however often that they do.

    Tuesday, November 1, 2011

    Marketing The Message

    The JDRF has a new message.

    With it being November and Diabetes Awareness Month, the time has come for the marketing of that message to begin.

    See Disclosure point in italics below
    New tagline: Improving lives. Curing Type 1 Diabetes.

    New logo: a blue hand with an extended index finger pointing in #1 –style, with T1D written on the finger.

    The name is now, simply: JDRF. All words behind that have been eliminated, though it’s pretty obvious what the letters mean and it’s more of an attempt to market the “juvenile” out of the name in order to represent the broader Type 1 community.

    I’ve written about this “culture sift” before, after attending JDRF Government Day in March and the third Roche Social Media Summitin June where JDRF CEO Jeffrey Brewer hinted about the coming changes.

    Now, the time has arrived.

    The JDRF chose the start of D-Awareness Month to unveil this new logo, and with it they have a new marketing campaign that's basically aimed around "Giving Type 1 the finger!" This is all coming out today on Nov. 1, which it’s dubbing the first annual T1Day to highlight the autoimmune condition so often misunderstood and confused with Type 2. 

    Disclosure: The JDRF National folk contacted me toward the end of October asking to send me some advance information about this T1D campaign (I assume this comes from being involved in JDRF Government Day back in March), and I provided my address. A package arrived with one of those foam fingers... They asked for my help spreading the word, to which I didn't agree or disagree to do. But I am and do plan to offer my honest opinion about all this. 

    Honestly, I’m not sure what I think about the new logo, tagline, accompanying videos and marketing campaign. I’m all for Diabetes Education and Awareness but some of this just seems a little, I don’t know, put through a PR spin-cycle rather than being authentic and real. Maybe I’ll ponder it for a bit, listen to the responses out there before writing more.

    What does resonate right now is the passion, heart, and rationale behind this new marketing push.

    Hearing Jeffrey Brewer’s voice earlier in the year, listening to him talk about why this was happening and getting at the feeling behind this change. That the entire Type 1 community, both young and older, are represented by the 40-year old organization that’s gone through more one than makeover over time. Really, it’s not the marketing push behind it. No, it’s the heart and soul of this organization that I feel closer to now than I’ve ever felt before.

    This year. I’ve felt in my heart and brain a culture shift at the JDRF – both at the national level and in many of the local members of my own community here in Indiana. I’ve seen it spread through the online ripples, touching so many lives that need it. And truly, it’s inspirational and awesome being a part of all this.

    But in many ways, seeing this passion play out at the local levels largely depends on where one might be located.

    For example, it’s a problem when those of us in the Diabetes Community reach out to our local chapters and don’t get a response. Or when we do get an answer, but those chapter volunteers or leaders aren’t receptive to our needs. Or when the Adults simply go unnoticed and ignored, until fundraising time draws near. These types of scenarios happen in many places, and so whatever national may be marketing or advocating it’s simply not reaching the local levels.

    This is a more fundamental problem that needs attention from both national and local levels, and no amount of logo or tagline marketing will solve it. I hope this emphasis on Type 1 will lead to more attention and gap-bridging in those areas that need it. I hope that the marketing of this message leads to more attention on the implementation of the mission that is so strongly embraced at the top levels and some places around the world.

    That’s the hope. And I’ll do what I can to help facilitate that.

    As far as awareness, aside from this marketing push, there's some important things happening and those deserve recognition.

    The JDRF is advocating about the Artificial Pancreas Project, and on Wednesday (Nov. 2) at 2:30 p.m. there will be a press conference with a whole bunch of Congress members, diabetes clinicians, and PWDs urging the FDA to issue "clear and reasonable" guidance on the Artificial Pancreas. This will also include an "exciting announcement" about the said project petition.

    This press conference will be live Tweeted, too - just follow along the hashtag #AP100k.

    More generally, the JDRF will be posting ongoing Tweets and Facebook status updates at 1-minute past the hour throughout T1Day. One of the hashtags I've seen = #T1D.

    So, that is what's on tap from the JDRF for the first day of Diabetes Awareness Month.

    Let the marketing and media push of the real culture shift begin.