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Partnering for Diabetes Change.

Will you be at the CWD Friends for Life conference? There’s panel taking place, discussing “Social Media & The Monster Under the Bed: The Latest Thinking on Fearing vs. Embracing Social Media,” focusing on efforts to validate the role of peer-to-peer support in diabetes management.  Here are some details:

I am proudly involved with this project, and am inspired by how the diabetes community supports each other, with that support contributing to improvements in all facets of our diabetes health.  The people involved in patient communities are what matters.  From an article I wrote in diaTribe a few months ago (but it still rings true for me today):

“Through connecting online, and in person, people living with diabetes have concrete proof that they are not alone, and that there is health worth fighting for, even after a diabetes diagnosis. Social media has saved lives in the diabetes community. It has helped people who are struggling with their diabetes to take control and improve their health. It shows people that there isn’t such a thing as a ‘perfect diabetic,’ but there can be an educated and determined one. It lets people know they aren’t alone in the ebb and flow of their diabetes management. It doesn’t encourage people to wallow in their troubles, but serves to inspire them to do the best they can, and to seek out the best healthcare they can find, both at home and in their doctor’s offices. A strong support system goes a tremendous way in making a difference for someone living with diabetes.

… I hope that the results prove what we as a community have found, but while we wait, we continue to share our personal evidence of the positive impact of social media. For now, the evidence is anecdotal. Eventually, the studies will show what we, as part of the diabetes community, have felt all along: personal connections between patients matter. The proof, for us, is in the people.”

I hope this discussion is the first of many.  If you’re at CWD, please sign up! And if you are off-site, you can attend virtually by signing up here.  For more information on Partnering for Diabetes Change, click here for a PDF.

{disclosures}

mySugr: Feeding the Diabetes Monster.

At first, I was all indignant about the fact that diabetes was portrayed as a monster in this app.

“I can’t hate it!  Or fear it, right?  That makes it a tumbleweed of psychosocial turmoil, doesn’t it?”

In efforts to truly test the app, I went all in and embraced the monster.  Which is why I’ve spent the last few weeks playing with the mySugr app, developed by a team of PWDs in Austria. One of the team members, Fredrick Debong, and I had the opportunity to hang out again last week at Doctors 2.0 & You, and I remain impressed with his approach.  It was refreshing to see a long-time T1D’er (dx’d at the age of four) taking on his disease in a very new, very inspiring way.  Regarding mySugr, Fredrik offered, “With the mySugr Companion, we turn diabetes therapy and logging, a normally tedious chore, into something exciting! My personal inspiration for the app is based on my own life with diabetes – now approaching 30 years, which also include a three-year stint of diabetes burnout. If the mySugr Companion can make us smile while pricking our fingers, take pleasure in our small daily victories and feel the progress we make, then we change our world for the better.”

I’m all about small victories.  Let’s dive in!

Per the set up instructions, you’re encouraged to name the monster, so I went with the current arch nemesis in our home:  Norman Price.  (If you’re not hip to Fireman Sam, Norman Price is this little jerkface who lives in the town of Pontypandy and seemingly lights everything in a fifteen mile radius on fire.  He’s good for keeping the firemen busy, but life would be much smoother if Norman Price was shipped out to sea.  Hence, Norman Price became my diabetes monster.)

After filling out the settings tab (offering up information like “on an insulin pump,” “measuring blood units in mg/dL,” “carbs measured in grams,” and setting the hypo and hyper thresholds), I was ready to roll.  And still a little skeptical, because I’m wary of most apps.  I wonder how long the quantified self apps can hold my attention (even though, in full disclosure, I have been using the RunKeeper app since last November).

Inputting data on this application is easy, and graceful, not a clumsy casino game-esque scroll bar or a tangled web of things you need to click on.  Hit the plus sign, enter the glucose value, and any other details you want to make note of.  The one line that didn’t make it into the screenshot here was “Notes,” which to me is the best line ever:  an open field to put in whatever you’re feeling.  There were several open field note options throughout this app, which is brilliant because, try as they might, app developers cannot make a drop-down menu long enough to cover all the different variables that impact diabetes management.

I also liked how there were some standard, and cleverly illustrated, “tags” you could use for data input:

Each data point logged, and tag added, and note noted, earns “points” for the user, which are tracked on the home screen.  I find logbooking to be tedious and boring and lacking any/all incentive (because the reward for good behavior is … to do it all over again?), so even simply  seeing a point value climbing as a result of my efforts to stay on top of things makes enough of a difference to keep me attempting to earn.

I’m only experimenting with the standard version right now, but am thinking about upgrading to Pro.  In the meantime, I’m trying to earn a few days of Pro by use of Challenges.  For example, I’m currently working through the Greenhorn Challenge, which encourages me to input enough logging data to earn 50 points, at which time I’ll be awarded one day of Pro use.  Sounds like low-hanging fruit, incentive-wise, but it works.  Which is probably why it’s hanging so low, yo.

A few things to change?  I’d love to see a reminder – that you can CUSTOMIZE – for updating your logbook.  While I might throw the phone if it nagged me, having a reminder that I can set/unset (“It’s been six hours since your last glucose test!!”) would be handy.  I’d also like to see an open field for inputting exercise, as I don’t often exercise in perfectly round numbers, and it would be great to see an illustrated tag field in the future for exercise options.  Basically, I’d love to ditch RunKeeper and have mySugr take over entirely, logging everything.  The reports function is nice, as far as PDFs go, but having something I could export into an editable document would be more useful, for things like basal rates, insulin-to-carb ratios, etc.

I also need to mention the sounds:  THEY RULE.  I know how goofy it sounds, commenting on the little whizzes and clicks of an application, but the sounds on this app are faintly robotic, and I feel like I’m virtually ticking something off my To Do list when I tag a data entry or enter a blood sugar.  Even when you press the “monster” and he squeals for attention, it’s entertaining and borderline cute.  A++ for sounds on this app.

It’s hard to say how long I’ll keep at using this application, since I’ve only been using it for two weeks.  But, to be honest, it was kind of nice to feed the monster and feel a little removed from it.  Or maybe freed from that need to be all harmonious with it.  By distancing myself from it and letting myself treat it as a task-oriented “game,” it makes the philosophy of “test, correct, and move on” easier to adopt.

And Birdy loved it, which makes me like it more.   She likes clicking on his avatar and seeing him flap his arms around and squeal animatedly.  She likes hitting “done” when I finish entering meal data because that’s when Norman simulated chewing and says, “YUM!”

“I want to see the little Norman Price diabeedles guy.  He’s so frustrating sometimes, isn’t he, Mawm?  But not all the time, right, Mawn?”

“You are so right, Birdzone.”

Want to download the application and take it for a spin yourself?  Click here to go to iTunes.  You can find out more information on the mySugr website, and learn about the Companion version, as well as the coming-soon Junior version.  And you can learn about the Monster Pack (aka the development team), too.  mySugr makes the monster easier to manage, even if he’s a sometimes frustrating, but not all the time, kind of guy.   Clever application, and one that I can see inspiring PWDs around the world to take their monster to task.

Disclosure:  I don’t have any financial anything tied to this company.  I like Fredrik, and he asked me to try out the application.  So there you go.

Diabetic Fashionista.

Fashionista, I am not.  (Confirmed by my lack of understanding as to what ‘couture’ means, my love for the white-bra-under-white-shirt combo, and my undying affection for the skort.)  But even I realize that nothing ruins the fit of a nice dress sometimes more than the bulky mess of medical devices.

During a presentation I gave recently, I wore a dress that had a snugger (not Snuggie) fit, and even though the neckline was high, stuffing the insulin pump into my bra made it look like I had a third, and unreasonably boxy, breast.  Pump in a “thigh thing” looked like a cell phone gone rogue, and clipping it to the inside of my bra (near the crook of my arm) made me feel like I couldn’t put my arm down, a la Ralphie’s brother from A Christmas Story.  (You’ll pump your eye out?)  Couple up this awkwardness with the Dexcom sensor jutting out on my leg and I felt like I was mostly made of robot parts.

Having a pump backup plan is important, in the event that your pump breaks.  I have my trusty bottle of Levemir and insulin pens armed with Humalog to see me through any hiccups with technology.  But for me, a pump back-up plan isn’t solely for unplanned pump vacations.  Sometimes it’s nice to go device-free, even for just the sake of wearing one stupid dress.

Which is exactly what I did.  The morning of my presentation, I disconnected the pump site and took a shot of Levemir (with a pre-practiced dose, knowing that I’d need to take another dose before bed, having practiced splitting my Levemir dose a few times in the past).  Insulin pens with fresh needle tips hidden in my purse and the Dexcom ready to BEEEP! if I screwed something up, I was ready to have a mini pump vacation.

I did 36 hours without the pump (9 am – 9 am, and then reconnecting at 9 pm when I was scheduled to take the second dose of Levemir for that day) and it was no big deal.  The Dexcom let me know when I wasn’t bolusing early enough, and I used my Timesulin pen cap to make sure I didn’t stack my boluses (because I rely heavily on the IOB data on my pump).  And overall, it was a smooth break, as proven by the Dexcom graph that stayed steady (albeit higher than normal, but still steady), thanks to some careful monitoring.

Is pumping easier?  For me, it is because I love micro-dosing (Correcting a blood sugar of 140 mg/dL back down to 100 without having to pierce my skin?  Party time.) and I appreciate the convenience of fluctuating basal rates and precision dosing.  But it’s nice to have options.  I like knowing that, if I want to take a little bit of a break, for whatever reason, I’m armed with the tools and the data to go back and forth as I see fit.  Diabetes doesn’t afford me a lot of options (as in, “I’d love the option to send you the hell back to wherever you came from”), but I do have a choice in how I deliver my synthetic insulin, or what finger I prick for a blood sugar result, or which meter fits best into my life.  And I’m taking advantage of the opportunity to juggle.

Because sometimes you just want to wear the skort dress.

“Bag got run over.”

I’m not a light packer, but I am an efficient packer, in that I can fit a week’s worth of clothes, diabetes supplies, and travel needs (laptop, sundries, phone, etc.) into a carry-on bag.  I hate checking luggage.  But for this last trip, the total time away was ten days (and included several days at a conference with “real shoes’ and ‘real dresses’ instead of casual clothes), so I had to buckle and check a bag.

But I still kept all my essentials (meds and technology) in the roller carry-on bag, to protect my diabetes supplies from the cold of the cargo hold and the possibility of being lost.  See?  Responsible-ish.

Which is why it sort of sucked when, as Chris and I were putting in the code to enter the building of the apartment we had rented in Paris, a box truck rolled by at the same time as a guy on a bicycle.  And in the chaos, my carry-on bag pitched into the sidewalk and was run over by the truck.

“Oh,” I said, kind of casually, watching as the first set of the truck wheels crunched over the handle of my bag, crushing it.

“Oh shit,” I said, less casually as the bag pivoted a little bit and the truck wheels further obliterated the handle, coming so, so close to smushing the contents of my bag.

“Bag got run over,” I said to Chris, half in disbelief and half channeling a neanderthal.  We both stared at it, and realized at the same time that my pump supplies, bottles of insulin (Humalog and Levemir), test strips, back-up meter, and all my insulin pens were in that bag.  Along with my laptop.  I immediately, and thankfully, thought about social media and how, even in a foreign country, I could hopefully connect with other PWD and borrow enough insulin and test strips to hold me until I was able to claim a stash of my own.

Nothing to do but drag the broken soldier into the apartment and asses the damage.  Miraculously, the truck only destroyed the elongated handle of the bag and dented the very top of it, leaving everything inside still assembled.  (Because my worst fear would be disassemble.)  My week’s worth of diabetes supplies were safe.

And it dawned on me that even the best laid plans can still become a big, fat mess.  Because even though I had packed enough supplies to brace me for a broken bottle of insulin, or gaffed up pump, or lost meter, I hadn’t split those supplies into more than one bag, leaving everything I needed to sustain my life in one, vulnerable spot.

“Good thing it didn’t smash the bag,” I said, pulling out my laptop and inspecting it for damage.  “My laptop would have been destroyed.  Oh, and all my insulin.  Both needed for my nerdy survival, right?”

Lesson learned:  Next frigging time, I’m splitting my supplies.  And steering clear of traffic.

Looking Back: I’m Fine.

Revisiting a post from October 2012 about that concept of, “I’m fine.”  Because, even though I have diabetes, I am fine, but there is that … thing. 

*   *   *

“You have diabetes?  You seem fine.”

“I am fine.”

On an average day, diabetes falls under the “annoying but tolerable” category.  I test my blood sugar, wear any combination of continuous glucose monitoring device/insulin pump technology, do the insulin-to-carb math, eat decently, exercise as often and as hard as I can … blah, blah, blaaaaaaaaah.  For the most part, I don’t see extreme hypoglycemia or excessive highs, and even though I see bits and pieces of diabetes in so many of my daily moments, it’s not something that keeps me from pursuing the better parts of the day.

But on some days, diabetes falls into the “eff the effing islet you refused to ride in on” category.  Those are the days when my infusion set cannula kinks up underneath my skin and sends my blood sugar cruising into the 400’s.  Or the days when a blood sugar of 38 mg/dL serves as a sweaty and panicked wake-up call at two in the morning.  Or I let my brain wander around the fact that I’ve had this disease far longer than I’ll ever have anything else, and I fear the impact of these fluctuating blood sugars on my quality of life, and longevity, going forward.

It’s this weird dance, the one between feeling like diabetes profoundly affects my day-to-day health, both emotionally and physically, and the feeling that diabetes is just a blip on my daily radar.

“You seem fine.”

I am fine.  I think?  I have a chronic illness – a disease – that compromises the function of my pancreas to the point where I need synthetic insulin daily, and even with dedicated management, I may see serious and debilitating complications in my lifetime.  That’s part of the dance – feeling and seeming fine and actually being fine, even though my body is dealing with something serious every moment of every day.

Is it an invitation for a pity party?  Nope.  But it’s a reminder that even though I feel fine, and I mostly am “fine,” there’s a part of me that permanently needs tending to, and ignoring it only leads to tougher roads.  The lows, the highs feel like they’re ships passing by, but what they may be leaving in their wake scares me.  I don’t live with any difficult diabetes complications at the moment (aside from closely-monitored and currently non-progressive retinopathy), and my A1C is at a comfortable constant, so diabetes does feel quiet and well-behaved at the moment, even after twenty-six years. But I know what it can do, and has done, and what it’s capable of.

“I am fine.”

It doesn’t mean I want people to ignore the severity and pervasiveness of this disease.  I don’t want people who might be thinking about donating their time, energies, and finances to type 1 research, funding, and advocacy to be deterred by the fact that sometimes we look fine.  What those outside of this condition need to understand is that this perception of “fine” is all relative.  One day you can be fine, and the next, things can be deeply and profoundly changed.

For November, the focus of the nation (and some parts of the world) will be pointed to diabetes.  Diabetes will be in headlines, and on television shows, and health and mainstream media websites alike will turn their attention on the disease so many of us live with and care for every day.  It’s in those moments when we need to show the world that even though we seem fine, we still need better treatments and a cure for this mess.  Advocacy is important, and we can make a difference in diabetes in our lifetimes.  Fine is status quo.  Fine is living with insulin therapy. Fine is tolerating stereotypes instead of changing them.  Fine is waiting patiently for things to change.

But we can do better.

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