16,425.

I have been wearing an insulin pump of some sort (the Cozmo, the Ping, and now the t:slim) since sometime in 2005, which means I've been pumping for nearly 9 years. Let's say, on average, I'm eating three meals a day plus a couple of snacks. Every time I eat, I need to take insulin.

That means that I've programmed roughly 16,425 food boluses in my life.

My breakfast routine has also stayed consistent for months: make an egg sandwich and wrap it in foil, grab all my stuff, get into my car, bolus for food, eat said food while driving to work. Every morning. Just like that.

Given all this, someone please explain how I managed to forget to bolus for breakfast today until I arrived at work and saw that my blood sugar was accelerating at the same pace as my frustration.

 Whyyyyyy.

The next most significant organ when it comes to diabetes, next to the pancreas?

The brain.

Review: Balancing Diabetes.

Oh wow, I thought. She was diagnosed the same year I was, at the same age - what are the odds?

I very clearly remember the first time I clicked over to Kerri's blog in 2009. It was this post that hooked me, and the realization that I wasn't the only one who was making mistakes and chiding themselves for not planning ahead, for sometimes dosing blindly and hoping for the best, for just wanting to live their life without the constant worry of "Did I bring...?" or "What if....?" looming overhead. She was talking about the real life side of diabetes; a side I had been keeping to myself. I hadn't realized until I stumbled across her that I longed to find someone to whom I could relate - how I felt, what I feared, what I celebrated, all of it. (And here she was!) Her words and admissions and analysis of this real life began to help heal some wounds I hadn't even realized were there. She was the gateway drug that led me to find the diabetes online community I love so much and depend upon.

So, you'll have to forgive me: I'm a wee bit biased when it comes to Kerri Sparling. 

Is this an objective review? It is not. She's my friend, and I'm a fan of what she does and who she is. I could say 10,000 good things about her and I'm sure I still would miss something.

What I do want to tell you is this: if you're already a fan of the wit, wisdom and wordsmithing magic that Kerri is known for, Balancing Diabetes will not disappoint you one bit. If you're looking for a variety of viewpoints on a variety of topics surrounding that real life with diabetes I mentioned - you will find all of that here. And if you or someone you love has diabetes but you've never heard of Kerri Sparling before, you need to fix that. Right now. I'll wait.

One of the things I admire about Kerri, and I've watched her do it time and again in a number of different situations, is that when the (well-deserved) spotlight shines to her, she grabs it and turns it to those around her. She walks the talk when it comes to altruism and the importance of a variety of voices being heard.

In Balancing Diabetes: Conversations About Finding Happiness and Living Well, she recounts many of her own experiences and thoughts as they relate to a life with diabetes: early memories of her diagnosis; the cruel wrath of a grade school bully; dating and relationship; her pregnancy and delivery of her daughter, and then motherhood; fitting diabetes devices into daily life; travel; the list goes on. She didn't stop there, though. She includes the thoughts of around 40 other people affected by diabetes (disclosure: I am one of them) to round out each chapter, and I loved the conversational tone it created. 

It takes a lot of courage to be as vulnerable as Kerri has been in this book, and that vulnerability is exactly what allows us, as readers, to connect with her so deeply. I hope you'll order a copy or twelve - it's a wonderful read.

You'll find Kerri's book, Balancing Diabetes: Conversations About Finding Happiness and Living Well, on Amazon, as well as the Barnes and Noble website. It also has a Facebook page you can like. I'm sure she wouldn't say so herself, and will possibly be embarrassed that I'm just flat-out asking for your help here, but I imagine it would be helpful if you'd leave a review on Amazon or maybe on the Barnes and Noble site, too, after you've read the book. Nudge nudge.

More on that disclosure: I was provided (free) with both a digital and physical copy of the book, and I am a contributor. I was not paid to write a review (or to contribute to the book, for that matter), but I consider it some karmic payback for all of the ways in which Kerri has helped me over the years, whether she realized it or not. 

What I'm Reading.

The DOC (and beyooooond!) has shared some really thoughtful and entertaining writing that I've enjoyed
this week, and I wanted to point you to a few places:

Sara at Moments of Wonderful reflects not so much on the "Miss Manners" controversy itself, but how some of our community chose to respond to it. "Last week the diabetes online community helped raise over $26,000 for people who are dying without access to insulin and education. This week, the diabetes online community told a 75 year old woman to 'eat' things and 'suck' things that I would not repeat in polite company or impolite company."

Another view on Miss Manners' advice comes from a fellow chronic disease patient advocate, Carly. She hits the nail on the head: "This is the sort of thinking that reinforces the stigma of illness – the more it is concealed the easier it becomes for people to (wrongly) assume it’s not a problem that warrants solving."

I've been binge-reading the blog The Sugars, penned by a "twenty-something" named Libby. This post talks about how she handled questions about her insulin pump while trying to snorkel ("come on guys, i’m not in any position to be answering questions right now, i’m pretending to be a navy seal going into a top – secret aquatic mission to save the world from mass destruction. or just like, focusing on not drowning once i get in"), and in this one she manages to both quote Drake and introduce a cool mini-series of (real life!) fitness stories from some fellow PWD young adults.

The site Faces of Diabetes is the creation of Edward, a PWD and photographer. In his words: "I made this project in hopes that you will be inspired and learn about how diabetes has affected other people's lives. Diabetes may seem rough when you don’t know anyone else that lives with it, but rest assured there are plenty of us out there…and we are going to show you!"

And lastly, Scott's review of Kerri's book, Balancing Diabetes, is so worth a read. I couldn't have said it any better myself, but I'll try at some point soon.

Happy Friday!

Gentle Reader: Your Manners Are Fine.

You may see a certain Washington Post article floating around the interwebs; it contains, in part, this letter and response from Miss Manners:

DEAR MISS MANNERS: I am a businessman who frequently flies both domestically and internationally. I also happen to be an insulin-dependent diabetic. 

I currently do my glucose testing in my seat. It does involve using a lancet device to get a drop of blood to test, but is fairly unobtrusive. Of course, all lancets, alcohol preps and test strips are stored in my test kit for proper disposal later. 

Am I being rude to perform this test next to a stranger? Injections I perform privately in the plane’s lavatory. In the airport, I use the counter by the wash basin, since most water closets have no room for insulin vials and other supplies. 

Many people seem to stare and resent the fact of performing such a function in this space. I have also had children ask, “What is that man doing? Isn’t that a bad thing?” (They’re obviously thinking of their drug education classes.) Am I too self-conscious?

GENTLE READER: Absent an emergency, medical applications (like bodily functions and grooming) are properly done out of sight — meaning in private or in a restroom — unless they can be done so surreptitiously as to be unrecognizable as such. Miss Manners does not object to a pill taken at dinner, so long as it is not accompanied by a dissertation on your cholesterol.

The technology associated with diabetes is fast approaching this standard, although Miss Manners draws the line at drawing blood. Restrooms exist to provide a proper location for such necessary activities when away from home, and those who use them have no business monitoring the respectable, if sometimes unaesthetic, activities of others. 

You may chose to tell children that it is a medical procedure, or ignore them and let their parents do that. Miss Manners would hope that any parents present would also resolve to teach their children to be more discreet with their curiosity.

Instead of addressing Miss Manners herself, I am choosing to write to the person I truly care about in this situation and take a crack at responding to the original letter. Miss Manners; meet Miss Realistic.

Gentle Reader of Miss Manners,

How thoughtful and lovely of you to consider the delicate flowers who might share small, confined quarters with you for a few hours. Miss Realistic admires your concern for their preferences; not everyone is so self-aware or makes such efforts to be so considerate of others. 

Miss Realistic questions, however, the experiential knowledge of the person from whom you were seeking advice. It is likely that Miss Manners knows very little of what a life with diabetes actually means, or how ridiculous her advice to you was. She may not realize the immediacy and unrelenting frequency with which one must manage one's disease. She has not acknowledged any recognition that taking care of one's health must certainly trump the discomfort of others, in every case. 

What Miss Realistic suggests, Gentle Reader, is that you do whatever it is you must do in order to maintain your good health. Regular testing, injecting, or whatever else one might need to do can often be done discreetly in public settings, but if not, Miss Realstic asks: 

So what? 

Please, Gentle Reader, know that public restrooms are intended for the relieving of one's bladder or the like, not for the infusion of insulin or the procuring of the minuscule droplet of blood required for a blood test. Miss Realistic wonders: would Miss Manners instruct one experiencing an allergic reaction to find a restroom to administer their epipen? A person with asthma to wait for a toilet stall to use their inhaler? Miss Realistic certainly hopes not. 

One final thought, Gentle Reader: if someone has a problem with you taking care of yourself, that problem belongs to that person, not to you. Please take a bit of the consideration you've offered to others, and turn it to your own health and safety.

A video Miss Realistic made a couple of years ago serves as an addition to this response; please enjoy, and keep taking good care of yourself (in public, even!).

You'll also find responses to Miss Manners from Jess, Kerri, Kelly, Scott, Ilana, Stacey, Rachel, Christel, Marie, Leighann, Brianna, Cecilia, Sara, Kari, Scott, Allison, Carly, Karen, Jess, Cara, Scott, Hannah, Heidi, and Chris.

Swoosh.

You know what I would love?

I would love it if the pattern-alerting capabilities of my glucose meter could be magically infused into my CGM.

Being alerted to patterns is cool and all, but it only really works if it's coming from a device that is taking enough readings for those patterns to be meaningful. (Related: I've been using the VerioSync meter for... two and a half months now?... and in all that time, it's alerted me to one pattern. ONE.) My BG testing has deteriorated to just a few times a day lately, with the rest of my guidance coming from my Dexcom's display. (I'm going through a bit of "eff this noise" burnout, but I can see that there's a well-lit end to this tunnel and I'm inching towards it.)

And because noticing patterns isn't one of my strong suits, it's taken me several days - not all in a row, but enough of them sprinkled over the past few weeks - to catch onto the fact that when I'm waking up to something over 200 and program the suggested correction bolus, I'm crashing an hour later - usually right as I arrive at work. Which means I kick off my work day in a sweaty, shaky, impatient, and slightly confused sort of way. "Awesome".

Even when I'm not issuing a correction bolus, I still see my graph trend down by 25 points or so in the first hour after waking - which would be fine if I woke up at 125, but when I wake up at 80 it's a real problem. My meter doesn't catch any of this if I'm not testing during this period of time.

While I'm thankful for the devices I have access to right now, I can't help but feel that they're:

Advocacy Help Needed: CGMs and Medicare.

Did you know that Medicare won't cover continuous glucose monitors (CGMs)?

It doesn't matter if you have hypoglycemic unawareness. It doesn't matter that you may have proven in the past that using a CGM lowers your A1C, or helps you avoid dangerous low bloodsugars, or saves your insurance carrier thousands of dollars in hospital bills when all hell breaks loose. It doesn't matter if your physician write a compelling letter stating its medical necessity.

Medicare will not cover CGM devices, for any reason, period. If you want one, you're paying out-of-pocket.

Sitting here as a thirty-something, it would be easy to dismiss this as something that doesn't apply to me. But if I'm lucky (or, depending on how you're looking at it, maybe it's the opposite?), someday this will absolutely apply to me, and I find it hard to sit on my hands and do nothing when I know that others need help. I value my CGM very much, and imagining my life without that technology available to me is a scary place to go.

I received an email from Laddie and Sue over at Test, Guess, and Go about Sue and her husband's struggle to get a CGM, and Sue is asking for the DOC's help. From Sue:

My husband has Type 1 diabetes with severe hypoglycemia unawareness and was previously covered for his Continuous Glucose Monitor (CGM) by private insurance. Unfortunately, when he went into the Medicare system at age 65 and needed a new CGM, it was denied because Medicare considers it a “precautionary” device. We appealed Medicare’s decision and quickly moved through the first two levels. We are now in Level 3 and had a hearing with an Administrative Law Judge on June 26, 2013. 8 months later we are still waiting for the Judge’s decision.

In the meantime, my husband has been without a CGM for over a year. During this time, he's had some pretty close calls. It's only through luck...or God watching over him...that he hasn't harmed himself or someone else.

Because of the incredible frustration and exhausting fear that we have experienced, I have become an advocate for all people with diabetes who need a CGM or will need a CGM in the future. Representative Carol Shea-Porter [D-NH1] has taken up the cause and introduced a bill into Congress: H.R. 3710: Medicare CGM Coverage Act. This bill provides for coverage of CGMS by Medicare if recommended by a physician. I have been in touch with Shea-Porter's Legal Assistant, Marjory Connolly, and they are currently doing a big push among Shea-Porter’s colleagues in the U.S. House of Representatives asking them to sign onto this bill.

You can find more about Sue's story, and what YOU can do to help, here: http://testguessandgo.com/2014/02/17/join-the-crusade/  Sue has thoughtfully laid out exactly what you can do, and has even provided a template for you to use when you contact your Representative. For those who haven't called a member of Congress before, I promise you that speaking with them is not as intimidating as you may imagine. Do your research so that you know what you want to say, and call. Be confident in your own voice. It's their job to listen.

Nothing will change if we do not speak up.

Dexcom Handle.

One disadvantage of sporting an arm site for my Dexcom sensor:

They're within reach of tiny hands and tend to be grabbed onto any time a "handle" is needed. (And those tiny hands tend to release their grip seconds before you're able to snap a photo, but I trust you can use your imagination.)

Wordless Wednesday: Spare A Rose.

(Please feel free to steal and share everywhere - two days left in the Spare A Rose, Save A Child campaign!!)

The Sushi Bolus.

Aaron and I have very different sushi strategies and preferences. When I say I love "sushi", what I really mean is that I love the rice rolls that involve cooked fish. I can't handle the slimy uncooked stuff that Aaron orders (I just shivered thinking about it). On the other hand, I will eat the wasabi that comes with my rolls, whereas Aaron will not even look at it, much less eat it. He's not a spicy food kind of dude.

Sushi Night (it's not really an official event, but more of an "Ooooh, you know what sounds really good?" spontaneous sort of thing) happens about once a month, so I've gotten some degree of practice with the art of the Sushi Bolus. And it really is an art, not a science - who knows what is in those sauces? Whatever it is, it's delicious, and when in doubt on carb counts I go with my stand-by strategy* of:

Throw a bucket of insulin at it and stalk your blood sugar for the next several hours.

A pain? Yes. Worth it? Also yes.

Every situation and PWD are going to be different, but here's what worked for me in the instance above: I ordered two "cooked rolls" (think California or Philadelphia rolls) and ate 14 pieces, plus some soy sauce, wasabi, and ginger. 6 of those were also covered in some sort of sweet sauce and I have no idea what it was made of. I set up an extended bolus on my pump to cover 85g of carbs over 3 hours, with a 65/35 split, and ended up with the results above.

If you've never programmed an extended bolus on your pump before, 1. consult with your CDE/endo (and also, this DiabetesMine article from 2011 does a nice job of explaining what this type of bolus is all about), and 2. here's what I mean by the above: what happens is that of the total amount of insulin I'm programming for this meal, 65% of it was administered up front as a normal bolus. The remaining 35% was spread out over a 3-hour period. This helps me because for whatever reason, sushi digests kind of slowly for me and using this technique helps me avoid a spike later. In fact, in this case I seem to have overdone it a bit, so I had to (at the end of that 3 hour bolus period) set a temp rate of 10% for an hour to even things out.

It takes some practice, but having the ability to bolus in more advanced ways like this is so valuable to me. It's one of the reasons I stick with using an insulin pump.

*As always, this is not medical advice. 

"We Are Not Waiting": The Tidepool/Asante Partnership.

Last week it was announced that Asante, makers of the Snap insulin pump, are the first diabetes device company to partner with Tidepool, a non-profit working to reduce the burden of T1D, in an effort to make diabetes device data open and available to patients and their caregivers.

This is where I'm going to highly encourage you to check out what Tidepool is doing, because it helps explain why this partnership with Asante is such a big, big deal.

I wanted to learn more about what exactly this partnership means, so I reached out to Asante and was able to chat with their CEO, David Thrower, and then with the CEO of Tidepool, Howard Look. They were kind enough to talk me through some of their vision for what this partnership could mean, and how it might improve the lives of PWDs.

What I learned is: yes, this is HUGE.

Wait, nope, hang on. More emphasis required.

THIS IS HUGE.

For example: you know how if you wear one brand's pump but want to use another brand's CGM, you're stuck using two different proprietary software programs to upload and interpret your data - and maybe you can't even access all of the data you want? Same goes for a glucose meter that works independently of your insulin pump or your CGM. They're all stand-alone devices, and most of them don't talk to each other. You're often forced to choose between using devices that the manufacturer has decided to integrate (a Medtronic pump and CGM, or an Animas Ping and their meter-remote, for example), or using the devices that you like best.

What if you were no longer bound by proprietary nonsense, and could choose devices based on what works best for you without being bound by what device-makers decide would work together? What if you could upload everything to one platform, and that platform could tell you everything about what your devices are capturing and recording - and help you decide what to do next?

What if that platform enabled you to use any number of apps, all of which were pulling data from all of your devices?

What if you could log into the cloud and see your child's CGM graph, in real time - while they're away from home?

A demo screenshot of what Tidepool's platform might let one see, moving in real time

What if you could send that CGM graph to another device? What if the graph you could see belonged to your child; your spouse; your patient?

@txtngmypancreas here it is, my son's cgm data 24/7, from anywhere, iOS/Android/Web, too. #wearenotwaiting pic.twitter.com/vuRVgU2fxV
— John Costik (@jcostik) January 23, 2014

What if your data was yours, and you got to choose how to look at it and what to do with it?

A screenshot from Tidepool's first app, "blip".

That's exactly what Tidepool is working to make a reality, and Asante has made a bold step in being the first device company to say, "yeah, we believe in this vision of open device data, too". As Tidepool's Look put it, "It's very apparent that there's a need for open data that PWDs and their caregivers can access in whatever way they want". Asante's Thrower echoed: "We founded Asante with the notion that diabetes comes with a constant and high cognitive load, and whatever we can do on our side to reduce that burden - to simplify the monitoring and treating of diabetes - that's what we ought to do".

And also from Thrower (I'm paraphrasing here): "In all of our strategies, let's treat people like people - not just consumers attached to a medical device. Their device choices should be based on what works best for them, not what works with what you already have. A logical extension of this is to make available to people whatever data is useful or that can inform their management decisions." And not in an endless, unintelligible spreadsheet, either - they want to present that data in a way that people can understand and use.

Can I get an amen!



































So all of this sounds great, but isn't FDA going to need to approve this? (And the cynics in us lament, and how long will that take?)

Yes, they will. And here's what they had to say: the key is engage early and often, and Tidepool has already met several times with FDA. Tidepool aims to classify their platform as a "masterfile" with FDA, and any corresponding applications may or may not need subsequent FDA approval.

So what can we, as a community, do to help make sure this vision of open and accessible data becomes reality? Here is Tidepool's ask:

• If folks would like to stay in touch with updates, they can add themselves to our mailing list at tidepool.org and also follow us at @Tidepool_org and Facebook.com/TidepoolOrg .
• We are about to start a pilot study of blip at UCSF. If folks are patients at UCSF, they should talk to their doctors there.
• Open source developers should send us a note, info@tidepool.org. Soon we’ll have lots of ways they can contribute. They can also find our code repositories at GitHub.com/Tidepool-org, and our nascent developer portal at http://tidepool-org.github.io. We’d also love help from QA people, test developers, and documentation tech writers.
• Of course, as a non-profit, we warmly welcome donations to our efforts at tidepool.org/donate.

And here's where the business major in me raises its voice: I hope the market rewards companies like Asante for making bold steps like this. If this is truly the kind of revolution we want for ourselves, we have to raises our voices.

(And remember - Asante is still offering those four-week free trials with their insulin pump.)

Editor's Note: Neither Asante nor Tidepool solicited me to write about this. When I saw the news break last week I was surprised to not see more enthusiasm and excitement, so I'm assuming most people just didn't realize what had happened. This is my own effort to help spread the word.

Diabetes Lifehacks.

One of the benefits of the DOC (diabetes online community) is that we get to share the tips and tricks that only a person really living with it would know, in an effort to make our diabetes management a little bit easier. It's group problem-solving at its finest: crowdsourced answers to common challenges.

To use another buzzword, a lifehack can be defined as an "uncommon solution to common problems", or "unusual ways of using everyday objects to make life easier".

Since Googling "diabetes lifehacks" didn't bring up much for me in the way of search results (although I did find this thread on TuDiabetes), I'm going to do what I can to fix that problem with this post.

(Important note: nothing here can be considered medical advice, and if you're unsure about something, check with your doctor first. Let's approach this as, "this is what I do" and not "this is what you should do". If you're sharing someone else's tip(s), please credit them!)

Here are some of the ones I'm aware of (and yeah, a lot of them are CGM and insulin pump-centric).

Wondering how to get Dexcom sensors to last longer? This is at least a two-part answer. The first part is getting the receiver to take readings again: you can either find "stop sensor" in your menu, or wait until the receiver tells you that the 7-day period has expired (and it stops taking readings on its own). After that sensor has "stopped", go back to your menu and select "start stensor". After another two-hour period, you can calibrate (by entering two fingerstick results) and continue on, with the receiver believing you're using a fresh sensor, when it really is the one you were already wearing.

The second part has to do with the actual adhesive - it's likely not going to stay stuck to you for a full seven days on its own. Use a medical tape like Opsite Flexifix (a DOC favorite), IV3000, or Tegaderm. Find tips here, here and here on how others use this tape.

If you have trouble remembering how long you've had your Dexcom sensor on, or when the 7-day expiration will happen, write the date and time of your sensor insertion on the sensor's packaging and hang onto it (this way you keep the sensor's serial number on hand too, in case you'd need it for calling Dexcom about sensor issues), or take a picture of it with your iPhone or similar device (the date you took the photo will be saved that way).



If you're pumping with a t:slim and wrestle with keeping tubing and the pump upright during a prime sequence, kitchen cabinet knobs are your friend.

Changing the battery out of an Animas Ping insulin pump without using a coin can still happen if you're wearing a medical ID bracelet.

If you need to disguise an insulin pump/CGM receiver/tube of glucose tabs under a dress, try making your own garter using thigh-high hose, sew a pocket into the dress, or maybe sport some stretchy shorts underneath. In a pinch? Baby sock + safety pin = you can wear your pump just about anywhere on your person.

Can't hear your Dexcom alarms while you're sleeping? The ol' glass and coins trick may work.

Remembering to grab all of the right insulin pump cartridge/site change-out parts become easier when you use small Ziploc bags for the parts. Especially helpful if you'll need to do a change-out away from home and tend to forget parts (cough, me, all the time) - just grab one baggie and one vial of insulin and you'll be good to go.



If you're on MDI (multiple daily injections) and don't want to mix up insulins whose packaging may be similar, use something like colored duct or washi tape around the outside of the vial (or pen!) to distinguish them. (You can also use washi tape to dress up a glucose meter!)

(Speaking of true hacking... check out this Dexcom DIY set-up for monitoring someone in another room. Whoa.)

Need a small sharps container while you're traveling? An empty glucose tab jar or eye makeup remover wipes container packs nicely.

Empty test strip tubes are also a good place to stash the used test strips in your meter kit - use a sticker on the lid (or marker on the labeling) to tell them apart.

Infusion sites can be dressed up with the help of a little nail polish and creativity:

Images courtesy of Amy Dooley; D-Momma to Lauren

What are your favorite diabetes lifehacks? Please share them in the comments section!

Diabetes Art Day: I Have To Think It's Funny.

My inspiration on this Diabetes Art Day comes from this beautiful song by Amanda Palmer. (Video here - probably NSFW.)

Find more diabetes art on the Diabetes Art Day website. (And thanks go, again, to Lee Ann Thill who organizes this event each year. I love seeing what our community chooses to create and share!)