Medtronic Diabetes Advocate Forum: Takeaways.

There are a lot of things I took away from the Medtronic Diabetes Advocate Forum: we had a whole day (and a half, if you count the dinner the night before) of speakers, dialogue and brainstorming with a bunch of really dedicated, passionate and smart people - on both sides of the proverbial table.

I have never been a Medtronic customer. I have no immediate future plans to become one. I have no clue why I was invited, but I have an idea.

Pharma companies that are willing to congregate (and foot the bill for) a group of patient bloggers and have an honest interest in what we think about their company have cajones, in my book. To me, it's a sign that they really are interested in engaging with the people their products benefit - that they realize that listening to the consumer's view, and the ways in which they want technology to help them, are worthwhile endeavors. A running theme throughout the Forum was that both Medtronic, and those of us who benefit from their products, agree that medical technology needs to take the viewpoint of the patient. Tech needs to make our lives easier - in the ways we live it, at the times we need it, and it needs to get out of our way when necessary.

"Who are these people?", you might ask. I'm not sure why no one ever lists out and links up these big blogger
conference photos (probably because it takes a lot of time?), but I remember coming into the DOC and finding
photos like this one and thinking, "Okay, I know who that that and that is, but who are these other people? And why is no one naming names?" So here I go naming names and linking links, from left to right, according to head placement.
Cherise Shockley, Bennet Dunlap, Karmel Allison, Jeff Hitchcock, Tom Karlya, Blair Ryan, Brandy Barnes,
Amy Tenderich, George Simmons, Kelly Kunik, LeeAnn Thill, Elizabeth Edelman, Scott Johnson, David Edelman, Dana Lewis, Sarah (Sugabetic), Sara Knicks, Adam Brown, Abby Bayer, Mike Hoskins, Leighann Calentine,
Scott Strumello, Karen Graffeo, Gina Capone, Kelly Close, Kim Vlasnik, Jess Collins, Manny Hernandez. Whew.

Here are some of my bigger (and not so much big, but anecdotal nonetheless) takeaways.

• It's easy to be cynical; to lump everyone into one category. "Pharma doesn't care about people with diabetes; they just want our money." "They are too slow/not speaking up loudly enough to the FDA/making products with planned obsolescence." I had the chance to meet several Medtronic employees - executives, PR reps, engineers, and the like. I got to hear directly from some of these people that they have a son, daughter, sibling, or parent affected by diabetes. I heard their personal stories of what drives them to do the best work they can, and I believe that they are doing just that - their best. I can't say that all of those presumptions are false (does anyone know the answer to that?), but I can tell you that there are good people at Medtronic who are doing everything they can to improve the lives of people with diabetes. I do believe that.
• Medtronic started out in a garage in Minnesota. (Minimed started in a barn.) Everyone has to start somewhere, and every great idea sounds completely crazy at first.
• An aspiration at Medtronic is to become the Harley-Davidson of medical brands. What was meant here is that Medtronic wants to be the kind of brand that inspires a loyal following, and that people enthusiastically recommend to others. The kind of brand that people would willingly tattoo on themselves. (You're kind of already there in that sense, aren't you?) That takes a LOT of work and time to do, but it's a great goal.
• In addition to being a faux motorcycle manufacturer, Medtronic would also like to be the next Apple. Anticipating needs (in fact, even recognizing them before the consumer does) is the name of the game here. There's also the idea of using personal and social data, and then tracking the resulting patterns, so that your devices can make suggestions. ("Your friends like ABCD app for carb counting. You frequently ask for advice on bolus amounts. Want to try it?") Think Trip Advisor, but for your pancreas.
• A handful of us were able to take advantage of the unique opportunity of touring the CGM manufacturing facility on Friday (most others had done the tour last year), and I had no idea that most of the process is performed by people, not solely just robots. I mean, every single one of their sensors that go out is worked on by one of six ladies, at a certain step. Six! For all of the sensors ever, anywhere! Wearing our clean suits and huge plastic glasses, we learned about the makeup of the sensors - real platinum and gold in there, folks - and just how stringent they are when it comes to safety. There are many points in the process where a sensor might be thrown out because it isn't meeting some criteria - and every partial sensor our tour guide would bring over was tossed, as it was then contaminated. Wow.
• There's an angle to the whole insurance coverage mess that I hadn't considered until it was brought up in one of the discussions. Paraphrasing here: "Patients need to ask insurance companies to cover new technologies (we were discussing MySentry, I believe) to demonstrate that there is a need for this kind of thing. If people aren't asking for it, they have no reason to consider covering it. Medtronic can tell insurance carriers 'Hey, you should cover this', but those carriers will turn around and say, 'Of course you do - you're the manufacturer'." It's a valid argument for appealing again and again when insurance turns you down - don't think of it as a "no". Think of it as a "you need to wear me down a bit more". (Downer? Kind of.)
• One of the brainstorming sessions addressed the following loosely-remembered question: "How can industry engage in the online community in a legit way? What should they do/not do?" It's a tricky question, that. Everyone has different ideas about what is okay - some want that interaction, some want to be left alone. Some want to see the faces behind the name. Some want quick response time. One of the things suggested was creating a "jumping point" for folks who are newly diagnosed or newly put on pump or CGM technology - there's no need to recreate the wheel by making a whole new "community" for these folks. Just provide a way to connect them to the communities and resources that already exist; build off of what's there already. And secondly, pharma can help us as patients to be our own advocates when it comes to addressing the FDA to submit comments on guidance or other procedures. To have someone point us in the direction of what is important (and why and when) to the FDA, we can form our own opinions based on that and strengthen our collective voice to help guide change.
• And lastly, Dr. Fran Kaufman (V.P. of Global Medical Affairs for Medtronic Diabetes) spoke to us about "volunteerism". We saw slides from her travels to places like Brazil and Haiti, and heard the stories of her work there. I can't speak for anyone else in the room, but my eyes were opened once again to how very lucky most of us are - we have access to the medicine that keeps us alive; we have refrigerators to keep that insulin at the proper temperature. I mean, Haiti has an 85% mortality rate for people with diabetes in the first year after they are diagnosed. It's something we can help change, but it requires prolonged attention and action. (Visit Life For A Child for more information on how to do just that.)

The Medtronic Forum was real people with (or parents of children with) diabetes talking with real employees. Real conversations about what is important to us as people with diabetes ("Can you make the alarms even louder? Where's the 'I KNOW!' button? Can you place more of the cognitive burden on the devices, rather than on us?"). What I hope comes from those conversations is some real feedback-driven improvements to the lives of people with diabetes.

Disclosure: Medtronic paid for my flights, meals and ground transportation during the Forum Thursday evening and Friday. No one was paid to attend, nor was anyone obligated to write about the Forum.

Reflex Theory.

At breakfast last Saturday morning, diabetes came up in conversation. (Weird, right?)

From L to R, back row: Bennet, Kelly, Karen, Sara and Mike.
Front row: Jess, me, Abby, LeeAnn, Leighann. Photo credit: Bennet.

The waitress came around with coffee (lots of takers there) and orange juice (I was the only taker, with a downward CGM arrow poised somewhere in the 60's). The speed with which I drained my glass and the location of our breakfast (we were adjacent to a bar) lead me to an epiphany of sorts.

Lately I've made a lot of beverage switches - absolving myself of Splenda in my morning coffee, avoiding soda and choosing tea or Crystal Light Pure instead, and when it comes to social drinking I've been calling a glass of wine over to my team more often than my fruity "girly drinks" of yore. You know the ones - cranberry vodkas with lime (which I've recently learned are named Cape Cods - sounds much more fancy), those sugar bombs called Fuzzy Navels, and the deliciously evil combination of pineapple juice and cake-flavored vodka. At some point I realized how quickly I guzzle those drinks, whereas a glass of wine I tend to sip in a more reasonable and ladylike manner.

It hit me, as the liquid disappeared down my throat, the reason I might be consuming those types of drinks so quickly.

It's a reflex.

Ever since I was a child, juice has been a form of medicine. Orange juice, in particular, was something to be administered in one continuous gulp as I struggled to hold the glass; shaking, sweating and completely out of sorts. The taste of oranges signals panic. Fear. Desperation. It amplifies the screaming in my head that says to EAT EVERYTHING EVER RIGHT NOW OMG I'M DYING.

Why did I expect that to be different as an adult, and with something else added to it?

I'd be interested to hear if anyone else has found this to be true - does anyone else feel like they'll never be able to drink a glass of juice like a "normal" person?

#TwoBits: Arden's Day Gives and You Can Do This.

Hat tip to Bennet at Your Diabetes May Vary for the #TwoBits idea; it's a blogging format that allows you to do a quick post (much as a Wordless Wednesday might work - big punch in a tiny package) pointing people to things going on in the DOC. Here's mine for today:

• If you aren't familiar with Scott Benner from Arden's Day, go fix that right now. Scott is the parent of Arden - a child with type 1 diabetes - and his family is doing great things to help people with diabetes. Namely, they've filed paperwork to incorporate "Arden's Day Gives", a non-profit that will assist children who are financially unable to obtain insulin pumps and CGMs. Get the lowdown here: http://www.ardensday.com/main/2012/4/4/ardens-day-gives-application-for-incorporation.html
• This is a bit of self-promotion, but in case you missed the tweets/Facebook post/blog post yesterday, the You Can Do This Project has a new look! Update your blog buttons, and take a look at where we're currently being featured (hint: it's really exciting): http://youcandothisproject.com/2012/04/03/new-look-more-to-come/

Medtronic Diabetes Advocate Forum: Demo, Discussion and Disclosure.

One of the many cool experiences at the Diabetes Advocate Forum last week was seeing the new remote CGM system, MySentry, in action.  A Medtronic employe performed a demonstration for us, and there were several members of the management team available to field our questions (as well as tolerate our propensity to crack snarky jokes).

I grabbed some video of most of the demo and the discussion that followed it (ranging from FDA obstacles to insurance coverage to "Does it stream Netflix?") (spoiler: it doesn't). As someone who isn't currently (and has never been) a Medtronic customer, I appreciated learning about what this MySentry thing is all about - and hearing those LOUD ALARMS in person.

Here you go:

The event held some surprises for those of us who attended; among the biggest was that Medtronic Diabetes announced that any of us in attendance at the Forum are offered the chance to trial the MySentry system for three months at no cost to us.

I haven't determined an answer to this offer yet - but I wanted to disclose this to you all, and let you know that none of us knew about this offer when we accepted the invitation to attend.

Is it an incredibly generous opportunity I'm grateful to be offered? Yes. Does it make me feel a little weird about accepting the offer? Yes. While the MySentry sounds like a great tool for a lot of individuals (parents of CWD, folks who already use the Medtronic pump and CGM, and people thinking of making the switch to Medtronic in the near future, for example), I'm not sure I'm one of them. I will, however, be interested to hear from others who trial the system what they think of it.

The offer also makes me wish that so many more advocates for the diabetes community could have attended, and could be offered this same opportunity. (Sara makes some great points today along these lines - go read what she wrote here.)

Thank you again to Medtronic for hosting this event - more to come later this week!

Disclosure: Medtronic paid for my flights, meals and ground transportation during the Forum Thursday evening and Friday. I, and others, chose to stay an extra day and were on our own for costs incurred during that time. We were not paid to attend, nor are we obligated to write about the Forum.

Medtronic Diabetes Advocate Forum: A Few Visuals.

I spent the past four days in the Los Angeles area in order to attend the 2nd annual Medtronic Diabetes Advocate Forum, and I'm totally exhausted.

You'll have to give me a bit of recovery time before I go into details, but in the meantime, here are a few snapshots. (I'm also working on getting some video up - bear with me?)

DSMA Live - if you missed the episode, visit www.dsmalive.com.

Group discussion led by George, Kelly and Kelly.

Well of course we did.

Santa Monica Pier.

I guess we were meant to be at the Getty Museum? (L to R: Bennet Dunlap, Kelly Kunik,
Leighann Calentine, Sara Nicastro, Karen Graffeo, Mike Hoskins, and part of
Jess Collins' head.) 

Van Gogh! My hero! Also, neveryoumind the rain-induced mess of a hairdo I've got going.

Blue Friday!! (photo credit: Cherise Shockley) L to R: Kelly Close,
Mike Hoskins, Karen Graffeo, Leighann Calentine, me (Kim Vlasnik),
Sara Nicastro, Scott Johnson, Amanda Sheldon (Medtronic), Jess Collins,
Sarah (Sugabetic), Cherise Shockley

Disclosure Time: Medtronic paid for my flights, meals and ground transportation during the Forum Thursday evening and Friday. I, and others, chose to stay an extra day and were on our own for costs incurred during that time. We were not paid to attend, nor are we obligated to write about the Forum. 

Guest Post: The Weight.

Today, I'm so very pleased to bring you a post from Kate - a fellow d-blogger with type 1 diabetes whose posts always leave me chuckling. (You'll see what I mean in a minute.) Thank you for sharing both your words and these adorable pictures of you and your husband, Kate. :)

* * * * *

First of all, thank you, thank you, Kim!!! For reading my blog, and asking me to guest post. I am honored to be posting on one of my absolute favorite and resourceful dia-blogs, and am excited to reach and connect with a whole bunch of new peeps in the DOC.

Secondly, if anyone is a tried-and-true Muppet fan like I am: I can't help but imagine Kermit, instead of introducing the guest star on each show, introducing me like this, complete with flailing arms, here:

"It's the Muppet Show, with our very special guest blogger, Kaaaaate Boylaaaannn! YAYAYAYayayayayAYyYAY!"

My imagination is far too active sometimes.

[Tiny voice in the back of my head: "Get back to the post, Kate."]

[Kate: "Oh, yeah. Right. That's why I'm here.]

[Tiny voice: And, keep it short.]

[Kate: Can't promise anything. Stop talking so I can get to it.]

 Soooo, I've been thinking a lot about weight recently.

Body weight: Since age eighteen, when I decided to give my shoulders a rest and stop competing in the pool, I've gained a pesky fifteen pounds that refuse to shed from my body no matter the months of intense workouts, or low insulin averages. I feel good and healthy by being active and athletic; I feel strong. I do, however, still feel (even after eleven years), heavy and uncomfortable in my own skin, and that weighs on me emotionally as well.

Emotional weight: This diabetes thing has been in my life since age four, for 25 years, never once taking a break. (The nerve! But, on the other hand, you have to admire diabetes' stamina for sticking around so long, and with such consistency.) It's HEAVY to carry around all the time. It's HEAVY to face day-in and day-out, when things are good, and when they are not so good. It's also super heavy when you've got other heavy things happening in your life, and you still have to pay attention to it. Just as diabetes has stamina, you have to muster up an equal amount, or more, to psyche yourself up and face it every day.

The weight of guilt: When I slack on testing, or know “I-shouldn't-eat-this-now-but-when-am-I-going-to-get-to-eat-and-bolus-oh-who-cares-it'll-be-ok-I'll-bolus-later-and-just-this-once-it-won't-effect-the-A1C-I'm-desperately-trying-to-lower.” Or, feeling guilty when I am sitting on my own little pity pot while on the T (you can't call it a subway and make it easy, Boston?), thinking to myself about how tired I am of carrying around/battling/wrangling diabetes along with life's other emotional issues, when at that very moment, I move aside for a man about my age (29) zooming into the car, smiling to me and saying "Thanks for making room," as he bends down and locks his wheelchair wheels. It's then I feel like a real... tool.

All of this weight adds up to emotional turmoil. For me, when I am emotionally flummoxed by any and all of this, I experience the physiological effects of said flummoxed-ness. Cortisol streams through my system and I get physically bloated. My blood sugar rises and hovers around 200. Anxiety sets up a permanent storefront in my brain. The weight of everything actually gets heavier.

This week, some of this weight was lifted. Upon realizing this, I recognized easing the burden of some of the weight is why I sought out the DOC in the first place: to share the load emotionally, therefore having positive effects on all sorts of different aspects in my life.

I approached the DOC about two years ago, when it dawned on me that other people have to write, converse, kvetch and ask questions about the very same boat I am in everyday. At the time, I was working at a college library's reference desk, and mentally smacked myself for not thinking and researching earlier being that it was my job to help find answers to people’s general queries. I stumbled upon Six Until Me and Texting My Pancreas. I read every day, thinking to myself about how these women were living my life and thinking very similar thoughts, not only about insulin, pumps, injections, endocrinologists, and health insurance, but music, cats, dogs, travel, exercise, and life aspirations. They made me feel comfortable for the first time in a long time that I have diabetes.

At that point, I had been a person with diabetes for 23 years. When I was diagnosed, my parents and I attended group meetings for parents and children with diabetes up until I was nine or ten. My mom was always scouting out other diabetes support groups for kids my age, and I even went to diabetes camp (having a pretty bad experience when they put me on THE WRONG INSULIN-- but I'll save that for another post). For the most part, however, I lived with diabetes solo: I was the only person in my family, my school, my neighborhood with Type 1, and didn't want or feel the need for camaraderie. I felt very much that it was my battle to fight, and that it wasn't going to stop me from doing anything; I could handle it all myself (a theme in my life) and be diabetically unique while doing it all. Furthermore, I felt that other people didn't need to be bogged down by "my problem."

When I approached the DOC, I was shy: I didn't know what vocabulary to use, or even what questions to formulate and ask. I wanted to be able to dive in with ease, immediately starting to write and connect with people, but having never done that, I sat back, observed, and used my research skillz to learn that there is this incredibly diverse, supportive, world-wide community of people who all want to learn and support each other as WE fight this battle every day. As clichéd as it might sound, knowing that I wasn't the only one lifted a huge emotional weight off of my shoulders.

I started writing a blog this winter, as I finally felt as though sharing my experiences and words could be useful to and appreciated by the DOC. I bucked up and told myself, "Who cares if my experience was exactly the same as so-and-so's? Doesn't that make us stronger?" I wanted to advocate for furthering research, and to advocate and be a catalyst for connection among folks with diabetes. Rather than sitting back half-heartedly searching for hash tags like #Type1, #diabetes and watching conversations like #dsma happen on Twitter, or not commenting on people's blog posts, I started saying, "Me, too! I know what this is like!"

A few weeks ago, the stars aligned and a group of Boston-based d-ladies got together after starting a conversation via Twitter and email. Some of them knew one another and had hung out before, and some of us were newcomers. I was nervous, thinking, "Will I be the only one who has had Type 1 since childhood? Will I be the only one who is thinking about pregnancy? What if I am on a completely different page than these gals? Can I do this? I haven't really done this since I was nine. Maybe I should just be quiet, or bail." If you know me, being quiet is not exactly my strong suit. I LOOOOOOOVE connecting and communicating with people, and I HATE bailing on things because I then feel guilty and resentful of myself for poor decision making and missing out on opportunities. I decided to go for a run before our dinner (and get those happy, confidence-boosting endorphins flowing), and found that as we introduced ourselves, talked about our careers, our frustrations with diabetes, our interests, our pumps, our situations--how diabetes weaves in and out of our lives-- it was GREAT. It was cathartic, fascinating, helpful in terms of tips and tricks and learning about what people have researched and what kind of groups they are involved with, and FUN. Who knew that talking about all things CGM could be fun? I came home that night, happy and light, reporting to The Hub that I felt like a stronger woman.

Then, this week, I met up solo with a gal from the group who is also thinking of and preparing for trying to get pregnant. It was a balmy 75 degrees in Boston all week this week, and we sat outside a burger joint, sipping vino (yes, at a burger joint) and talking about being English majors, OmniPods vs. tubing, husbands who are attorneys (something we share), doctors, and how even when we do our very best to "control" diabetes, we feel as though diabetes controls US. I talked about being self-conscious about the fifteen pounds I've put on since my 'retirement' from competitive swimming, and how frustrated I get because diabetes, and stress, and life seems to keep the pounds on. Just being able to say those words to a person, and them understanding the reasons behind all my individual frustrations, while sharing her own frustrations different than mine, and yet being on the same page about everything was pretty... enlightening. Our night out defined why I sought out the DOC.

Our night out also made me realize I want to do more. Connect more. Kvetch more. Accept myself-- and my dia-mistakes, body image issues, even my own emotional turmoil more. Sharing and learning from all of our experiences with diabetes in our lives, in our families, in our minds 24/7, collectively lift the heavy weight of diabetes and all of it's heavy, heavy baggage from my life. I not only want to help lift that burden from other people's lives, but want to know I can look to a place or person and cry out "WHY?!," and get answers and encouragement. [Yes, that was a gratuitous U2 reference.] I also want to know that I can look to a place or person, and say, "By any chance, anyone have tips for decoupaging an end table? Do you find when you decoupage, your blood sugar drops?" [I've never decoupaged in my life.]

I live in constant hope for a cure for diabetes, but until then, I know I will have to carry the weight of diabetes all the time. I know that I'll struggle with my small frame and a few extra pounds. I'll struggle (and maybe sometimes excel) at wrangling emotions and tough situations in life, and diabetes will be there in the pounds and in the wrangling. But, I don't have to do it alone. I can quietly seek out reassurance. I can read, and research. I can loudly commiserate. There are plenty of people out there saying, 'Take a load off, Kate. And put the load right on me."

That notion alone lifts worlds of weight off my shoulders.

"The Weight" by The Band, featuring The Staple Singers, from The Last Waltz uploaded by dogheadio on YouTube.

* * * * *

Here's a bit about Kate, in her words: 

Kate Boylan is an incredibly persistent (read: tenacious), stubborn yet bubbly, people-loving and lively Italian-Irish kid from Staten Island, New York. (Though she has mixed feelings on the isle settled by the Dutch at present, it is definitely NOT [all like] the [show] "Jersey Shore," and she's proud of her hometown.) She lives in, and is still getting used to Boston (even after a decade), with her best partner in crime, "The Hub."

Kate has had Type 1 diabetes for 25 years (diagnosed at age four), and recently switched from multiple daily injections (Novolog & Lantus) to a Minimed Paradigm Revel pump (Novolog), and she's loving it. Kate is contemplating seeking out a CGM, and welcomes pros and cons!

She is way into music, tries to maintain being athletic and stuff; loves food and cooking and good red wine, and scotch nice and neat, and baking, and art and museums, and movies and film theory, and libraries and old books, and family and friends and traveling everywhere and people. Whew, right?

By day, Kate is an Information Specialist (read: fancy new term for Librarian), and is interested in the sociopolitical and economic impact of emerging media and technology on, well, the world. She gets jazzed by thinking about information and media preservation, information literacy, information creativity, and critical inquiry of all of the above, not just relative to her job, but in all aspects of life.

Guest Post: Diabetes Anonymous.

As I mentioned on Monday, I'm heading out this morning to attend the Medtronic Diabetes Advocates Forum for the first time - it's a reaching-out-to-the-DOC event at Medtronic headquarters in the L.A. area. Disclosurey stuff: Medtronic invited me to attend this event and will be covering the costs of my transportation, lodging, and food while I'm there. I am not required or paid to write anything about the event, but c'mon. You know I will anyway. (And I'm sure they know that, too.) And speaking of writing...

Have you ever read something that you wish you had written yourself? It's so clever, so perfectly worded, so "Yes! THAT!" that you want to reach into your computer screen and hug the ever-living glitter out of the person who wrote it?

That's how it feels when I read Martin's blog, Diabetically Speaking.

I hope you'll enjoy reading this post from him as much as I did. Take it away, Martin!

* * * * *

Hi. My name is Martin, and I have diabetes.

“Hi Martin!” the room responded, cheerfully. I could hear the welcome in the chorus of voices, and see the look of acceptance in their eyes, everyone excited that I was there, encouraging me, urging me to “Please, tell us your story!”

Everyone in the room knew what living with diabetes was like. They all either had diabetes or loved someone who did. The only “type” in the room was Type Awesome. The room was filled with children and adults of all shapes, sizes, genders, and colors. There was no room for judgment, or an ignorant “type war.” Diabetes doesn’t discriminate, so neither did anyone in the room. They didn’t care if they were called “diabetic” or “people with diabetes.” Those are just words, and what mattered most was that we, of a similar circumstance, were there together.

I joked to the group that I had “the bad kind” of diabetes. They laughed. We all know that there is no “good” kind of diabetes. At the same time, we also know that diabetes is far from the death sentence that it was 100 years ago.

People live as full and productive lives with diabetes today as people without diabetes. Charlie Kimball races Indy cars for a living. Jay Cutler is a quarterback in the NFL. There is an entire professional cycling team that races with Type 1 diabetes. Living with diabetes requires us to pay attention to our bodies, and it’s arguable that many of us with diabetes are in better health than someone without diabetes who may procrastinate and ignore what their body is trying to tell them.

I told them about how I was diagnosed with “the beetus” when I was two years old, and that a life with diabetes is the only life I’ve ever known. I looked around the room for understanding, and a few people were nodding their heads, understanding what it’s like to not know a life without finger pricks and needle sticks.

I shared how I feel like those of us that have had diabetes all of our lives have it easier than those diagnosed later in life. Those later in life have a lot more to overcome. They have routines to break, habits to change, and a lot more to “get used to.” But for the most part, we do get used to it, because people with diabetes are resilient. Change, for a person with diabetes, is a normal everyday occurrence.

I briefly mentioned about the frightening times I’ve gone low and needed help, and the times that my blood sugar was stubbornly high and it took me a day of dosing a steady stream of insulin and not eating to get it back down to normal. That kind of stuff just happens sometimes, regardless of how good of “control” we may have with our diabetes. And that is okay. Nobody’s perfect, and nobody (doctors, parents, significant others, or even ourselves) should expect perfection. With diabetes, most of the time good enough is good enough.

Finally, I told the crowd how I celebrated 30 years with diabetes by jumping out of an airplane. I told them about the times I pedaled my bicycle 150 miles for fun and to raise money for charity. I told them about the time I rode my bike in the Five Boro Bike Tour in New York City. I told them about the Warrior Dash that I have coming up where I get to traverse a 3-mile obstacle course that includes, fire, mud, and probably a ton of other not-so-insulin-pump-friendly environmental hazards. I also told them how the day after that, I fully intend to be on my couch in front of the TV and do absolutely nothing.

That is life with diabetes. A person with diabetes can do anything that anybody else can do, including nothing at all, and still be awesome.

Then I sat down, checked my blood sugar, and had a complimentary cupcake and a Diet Coke.

* * * * *

And in keeping with my opening statements, I'm not editing the bio he sent me one bit:

Martin Wood is the creator/author of Diabetically Speaking, a Type 1 PWD for more than 30 years, a medical librarian, a cyclist, and a purveyor of all things awesome. He has an affinity for all things plaid, likes long walks on the beach, piña coladas, and getting caught in the rain. If you need a laugh and some encouragement to not take life so seriously, visit his blog at DiabeticallySpeaking.com and follow him on Twitter @woodonwheels. And don't eat yellow snow...unless you know how many carbs are in it.

Wordless Wednesday: Travel Companion?

Looking Back: In Pump Failure, And In Health.

There has only been one time in my life that my insulin pump has bit the dust - and it just so happened to be on a pretty important day. Main takeaway: do not, under any circumstances, wear your pump under a pair of Spanx and multiple layers of satin and tulle in 80+ degree weather. Trust me on this one.

* * * * *

Some of the most common advice about wedding planning is that while you can try to plan out every detail, it is nearly inevitable that something will still go wrong.  Aaron and I heard this from many people as we planned our wedding, which took place in June of 2009.  A lot of times, however, you don’t realize how good the advice you’re getting is until it becomes reality.

I’ve mentioned before that our wedding day had a couple of minor catastrophes. I’m not talking about flowers being the wrong color or reception food being cold. I’m not talking about hung-over groomsmen or rainy weather. No, when I have a catastrophe, I go big – I’m talking about our photographer not showing up, and my insulin pump dying.

(Let me preface this story by telling you that I’m not sure how I didn’t freak out in a ridiculous fashion about either of these issues. I think my Bubble of Wedding Day Happy must have prevented me from feeling the full force of either situation.)

Pictures were scheduled to start at 9:00 am, with the guys first, then the girls, then all of us as a group. At 9:05, with our photographer nowhere in sight, Aaron got a little worried and got out his cell phone. “Hey, it’s Aaron, just wondering where you are. Hope everything’s okay. Give me a call back.” After a few moments, the photographer called back.

Incompetent Jerk: “Hi, Aaron. What do you need?”

Aaron: “What do I need?  I need you here! Where are you?”

Total Loser: “Um, I’m at home. Why… what’s going on?”

Aaron: “You’re supposed to be here! Right now! It’s 9:10!”

Guy I Wanted To Strangle: “Oh, sh!t. It’s today? I had it written down as next weekend! Oh sh!t! I’m on my way right now….” (Important Detail:  he lived an hour's drive away from where we got married.)

Aaron: “Don’t even bother. We’re done.” *click*

And thus began the couldn’t-be-more-last-minute search for a new wedding photographer. On a Saturday morning. In June; the peak of Wedding Season. (HA!  AHAHAHAHA!  HAAAAA!  /crazed and delusional laughter)

Sheer luck and chance led us to finding someone. And not just someone – a super great guy who’s a well-established photographer in the area. As fate would have it, we caught him on the one Saturday in June he hadn’t booked himself out, because it was his daughter’s birthday. As fate would also have it, his wife was willing to wake him up so we could talk to him (he was still sleeping when we called), and he was willing to give us his whole morning and as much of the afternoon as we needed.  We’ll never be able to fully express our gratitude to him for that.

I also owe thanks to my brother, who was elected as the person who had to go tell me that the photographer wasn’t showing up. That takes courage.

My wedding day preceded my involvement (or even awareness of) the DOC. I didn’t know that other ladies had pockets built into their wedding dresses for their insulin pumps – so I did on my wedding day what I did every other day; which was to hide it under my clothing via undergarments. More specifically, my Deltec Cozmo pump was between my Spanx and I, and both of us were all wrapped up in layers of satin and tulle.

In retrospect, I can see the trouble brewing. At the time, I thought nothing of it. It’s a waterproof pump! I've had it for four years with no problems!  It’ll be fine!

And fine it was, until Aaron and I were in the vehicle that transported us from ceremony to reception. We were sitting in the back seat, being excited and nervous (and hungry), when all of a sudden my pump starts incessantly vibrating.

Spanx + wedding dress + sitting down in a car = a pump that’s REALLY HARD TO GET TO.

Upon retrieving it, I noticed that the screen had a bunch of gibberish on it, and that none of the buttons were responding. It kept vibrating, then beeping… and I couldn’t do anything to stop it. Nor did I know if it was delivering any – or way too much – insulin. I had to disconnect and take out the battery.
 
And that's when the tears came.  Why now, Mr. Pump?  Of all days in my life, why did you die today?  And not only today, but two days before I'm leaving the country on my honeymoon trip? 
 
In addition, Deltec/Smiths Medical (the manufacturer of my insulin pump) had announced a couple of months prior that they'd decided to discontinue the Cozmo and leave the diabetes supply market.  In my mind, I was imagining horrid scenarios where I'd try to call the customer service 800 number, and that pre-recorded robot lady would tell me "This number is no longer in service".
 
I was also imagining horrid scenarios where I wouldn't get to eat my own wedding cake.
 
Thankfully, for the first time in my insulin-pumping life, I had asked my internist at my last appointment for some back-up supplies.  It never occurred to me that a pump failure could happen on the actual wedding day - I was thinking about the overseas trip.  My brother once again stepped up to the plate by quickly driving to my house, getting the specified supplies out of my fridge, and bringing them to the reception for me. 
 
After the reception, I got on the phone with Smiths Medical.  Let me just say, they were wonderful.  I explained the whole story.  About how it was my wedding day, and my pump had up and died with no prior warning.  About how I was flying overseas within 48 hours.  And you know what?  They had a new (well, refurbished, but a working) insulin pump at my door within 12 hours of my phone call.  Awesome.
 
That very same wedding advice can (and always should have been) applied to my diabetes life, as well.  You can plan and plan, but things can still go wrong.  The best robot parts can still malfunction, and they can have spectacularly bad timing.  Having back-ups of everything helps to make those small bumps in the road seem a bit less like mountains.
 
And that cake?  It was delicious.
 

Possibly the most worthwhile use
of a back-up Humalog pen ever.

Looking Back: That Half-Marathon I Did.

In lieu of fresh material this week, I'll be looking back on some old (can they really be "old" if this blog isn't even two years old yet?) blog entries and sharing some posts from friends gracious enough to temporarily take the reins for me here on TMP. The reason for the break? I've been invited (for the first time!) to the second annual Medtronic Diabetes Advocates Forum which occurs later this week, and I'll be busy getting ready to be gone for a few days. You understand, right? I'm sure I'll be sharing some take-aways with you all once I get back! (And until then, feel free to follow the hijinks on Twitter.)


In the meantime, here's a post I wrote after doing the first (and only?) half-marathon of my life. With my recently renewed interest and resolve to exercise regularly, I hope to be back in this kind of fighting form again soon.

* * * * *

Last month, I attempted (and completed!) my first Half-Marathon. I had never done anything like that before, and have never historically been a fan of running. A few years ago, I forced myself to try it again, and it wasn't so bad. A friend of mine (non-diabetic) does this Half-Marathon each year, so I decided to give it a go with her. While the race itself was fun, my diabetes didn't agree. I was able to finish, but was very slow (this may also be attributed to my less-than-stellar dedication to training). Here's my marathon story:

I woke up at 5:00, and although my numbers had been good while I slept, I shot up to 175 for no reason as soon as I woke up (according to the CGM). I did a blood test to verify, and yes, that was right. I took one unit of Humalog, which brought me down to 125, almost literally right away. This kind of speedy drop is not normal for me.

I got ready, and my brother was here at 6:00 for us to go downtown to the start line, with my husband. (My brother, who is not T1 - and a phenomenal athlete - also ran. My husband met up with me in between aide stations to refill Clif Gels, give me some additional water, and whatever else I might have needed. As another runner said during the race, "He just earned Husband of the Year".) I ate a Snickers Marathon Nutrition bar on the car ride, with no bolus taken for it. I should also mention I turned down my basal to "OFF" at 6:00 am, and didn't turn it back on until after the race was over.

We lined up around 6:40, and my CGM said 83. Then, a few minutes later, 72. Really? I hadn't bolused for the bar I ate, and that was 22g of carb! This is where I panicked a bit. I ended up eating two Clif Shot gels - also about 25g of carb each - before the start. By the time we got to the starting line around 7:15, I was shooting back up, and was 157. I thought, "Awesome! Don't know what happened there, but at least I'm back up where I want to be, now."

Fast forward to mile 2 - I notice I'm over 200. Okay, not panicking yet. I "peaked", or so I thought, around 280 and then it showed that I was coming back down pretty quickly. Again, as a precaution, I ate another gel. This may be where my biggest mistake was, because I didn't drop too much more after that. In fact, I did most of the race over 300, and a good chunk of it "HIGH", which means I was over 400. I started taking a unit here and there after mile 8, not wanting to overdo it and drop too quickly.

Ponytail. No makeup. Utility belt full of
diabetes crap. Awesome!

By the 12th mile, I was back down to the 300's, so I was probably about 325 when I finished. Who knows how high I really got - but I tested before and after the race, and the CGM was accurate both of those times - so I have to believe those numbers are true. I felt pretty throw-upy feeling around mile 10, and I'm not sure if that was hyperglycemia-related, or not - but I slowed down, and the feeling subsided. I drank half a cup of gatorade around mile 5, and stuck to water after that.

It feels so good to know I was able to finish. I was very slow, and didn't run as much of it as I walked, but I finished, darn it - and that was the point. Finish, no passing out or throwing up. Check, check and check! I am usually very diligent about keeping my numbers in check, but for this race, I wanted to focus on finishing - whatever that meant, diabetes-wise. I tried to not let the sight of such high numbers bum me out, and just focus on moving forward.

I feel like I did learn alot for next year. If I'm able to, I'd love to do this race each year, with a new goal - cut time, run more of it, have better numbers during the race, etc. Let's be clear: T1 does not hold me back from anything I want to do. It merely takes a little more effort and work to get there.