Joslin Blog Project: Moving Forward.

This post wraps up my part in Joslin Diabetes Center's Blog Project, which I participated in alongside a handful of other dedicated and passionate diabetes advocates during Diabetes Awareness Month. We each wrote four posts (you can find my first three here, here, and here) that detail our personal journey with diabetes, in the hopes that we could raise $5,000 as a team for the Joslin High Hopes Fund. It's not too late to donate, and any amount helps!

Our prompt for the final week is: What tech/management tools/delivery systems have helped you live more normally? How could these things be better?

Much like Batman and his utility belt, I carry and/or wear devices and gadgets that make my job - the job of living well with type 1 diabetes - less difficult. (I hesitate to say "easier", because it remains a fact that exactly none of it is easy, and won't be until technology can do the thinking for us. And even then... okay, I'm stopping this tangent here. It's a whole seperate blog post.)

My trifecta of necessary evils - glucose meter, insulin pump, and continuous glucose monitor - allow me, when used optimally, the information and flexbility to live as "normally" as anyone with diabetes can.

The pump, when programmed correctly for that exact moment in time, gives me the freedom to do things like eat Mexican food (love you, temp basal + extended bolus) and sleep in (love you even more, sleep) on the weekends. It does some of the work that my pancreas won't.

The CGM looks out for me most of the time, alerting me to rises, falls, and out-of-range readings. But more than that, it gives me some degree of confidence. Confidence to exercise, to try new foods, to not eat at all, to sleep (perchance to dream?), to live with a smaller amount of fear and worry. If I had to pick only one piece of tech to help me with diabetes management, this is it.

Glucose meters give me valuable information, too - and some even provide that information in ways that are comfortable and convenient for me - even fun, sometimes. They help me make dosing decisions, food decisions, and mood decisions. (High? I'm grumpy. Low? I'm confused. Just right? I'm Goldilocks.)

But "how could these things be better"? Hoooo, boy. This one's a doozy.

Gadgets, apps, and everything else under the "tech stuff" category is great, and something I'm grateful for - it's more than someone like my grandfather could have ever hoped for, I think - but it's still flawed. It still leaves an enormous cognitive burden on the patient - not just decision-making, memory, and judgment, but also the emotional repercussions of all those. What would be abso-freaking-lutely lovely would be technology that carries more of that burden for me. I'm talking some serious science here - I want an artificial pancreas. I want a Bigi. I want a system that forces diabetes to take care of its stupid self, so that I can take care of me.

And if I can't have that (yet), I want better interoperability, for the love. Nearly everything I use is an island. Does my CGM make recommendations to my pump? Nope. Does the iBGStar app integrate with the GoMeals app? Nope. Can I use one charging and data transfer cable for all of my devices? HA! With the exception of the few bits of data that can ping between my pump and the meter it rode in on came with - that I never use, because it's ugly and clunky and ugh don't even get me started - nothing talks to anything else. Correction: they all talk to me, and no one/thing else. Not good enough. It's like trying to conduct an orchestra that I can't hear. I want auto-tune.

What I need is more, so that I can have the luxury of less.

Joslin Blog Project: Talking.

I'm honored to be participating in Joslin Diabetes Center's Blog Project this month, alongside a handful of other dedicated and passionate diabetes advocates. We'll each be writing four posts that detail our personal journey with diabetes, in the hopes that we can raise some awareness along with some money. Our goal is to raise $5,000, as a team, for the Joslin High Hopes Fund through this blog project.

Our prompt for this week is: Why/how did you get into blogging? What have been the best and worst parts of doing so?

I've shared my "how I found the online community" story before - so there's the beginning of how. But why? My first entry here explained how I hoped that adding my voice to the diabetes blogging community would bring "more awareness to the cause, and some comfort, information (and entertainment?) to those affected by diabetes". I think all of those still ring very true for me - I'm here to share my story, through whatever medium seems to fit best. I'm here because I know that feeling alone is one of the most toxic parts of life with diabetes. I'm here because I wish someone like me had been around when I was going through my lowest points.

My very favorite moments of being a diabetes advocate are the ones that connect us on emotional and personal levels: the swell of cumulative encouragement when someone needs it, the realizations and connections that lead someone to feeling the very essence of community in their heart, and the forming of friendships that sometimes begin with just a tweet and grow into the deepest sorts of love and support.

image credit: Wendy at Candy Hearts

When we give, we are beautiful. When we show love, we are true.

My less favorite parts center around the things I shouldn't care about, but sometimes do: Is this my last good idea? What on earth am I going to write about today? Am I tweeting too much? How can it take me five days to respond to an email sometimes? Why am I literally losing sleep so that I can stay up to write something that no one comments on? Why is no one commenting? Why do I care that no one is commenting? Was I off base? Do I care? Should I care? Should I really be using every vacation day from my "real job" to go to conferences? And then, shouldn't I just be grateful I have these opportunities and who needs a real vacation anyway? Is it worth the sacrifices I make in my "real life" to continue being this heavily involved in advocacy? And what on earth am I going to write about today?

The truth is that I pour my energy, time, and heart into what I do as a diabetes advocate because it feels right to do so. There are times I can help someone laugh at something so cruel and punishing as diabetes - I love being able to do that. There are times I'm able to really connect with someone; to perhaps put words to something they've been feeling but haven't vocalized - I love that, too. There are times that someone who feels as I once have finds me and says, "I thought it was just me".

What I love most is being even a small part of that realization in others. It's never just you.

If you would like to make a donation toward our $5,000 blog project goal for the Joslin Diabetes Center, you may do so here.

CVS/pharmacy: Twitter Chat and Free Stuff.

A couple of months ago, CVS/pharmacy contacted me with a question: would I help give them some ongoing feedback on their diabetes products and programs? I'm still sorting my way through everything they sent me, but I wanted to disclose to you all that they sent me some free stuff.

I received a kit full of their house brand diabetes stuff (useful things like glucose tabs and a meter, and then less useful things like "diabetic socks" and sugar-free cough syrup, but hey, they're trying) and information on their verbosely-named "CVS/pharmacy ExtraCare Advantage for Diabetes Program". From what I can tell so far, enrolling in the program gets you lower prices on some items, as well as more "cash back" through their savings program. Sounds promising!

They also will be hosting a Twitter chat today, Thursday, November 15th at 3:00pm EST, in conjunction with the American Diabetes Association. You can join in by following @AmDiabetesAssn and @CVS_Extra, and the hashtag #DiabetesMonth. According to the info they sent me, this chat will "discuss proactive diabetes management, including medication adherence and using diabetes supplies". Answering questions during the chat will be Dr. Elizabeth Seaquist, Vice President, Medicine & Science, American Diabetes Association and CVS pharmacist Flora Harp.

And to get you (even more) amped up about the Twitter chat, CVS/pharmacy is sponsoring a giveaway, right here! You can win everything seen in the picture below, and I have three of these kits to give away:

Your breath will be minty! Your skin will be soft!
Your lows will be treated appropriately! You'll get a cute
and tiny meter with a test strip bottle koozie!

To enter the contest, just leave a comment below that uses the term "CVS". The three winners will be picked (using a random number generator) tonight from the comments that are left here before 10:00pm CST today! Check back on this post afterwards to see which commenters won!

UPDATE: I apologize that this wasn't addressed in my original post, but I'm now told that this offer is good for U.S. residents only. So sorry to my global readers who had their hopes up! :(

UPDATE: At 10:00 pm CST there were 38 comments, with 34 of them qualifying for the contest. Using random.org, I selected a number between 1 and 34 three times. 

Congratulations to:

Thanks to everyone who entered! Winners, please email me at textingmypancreas (at) gmail (dot) com so that I can get your information to the folks at CVS! 

World Diabetes Day 2012.

It's World Diabetes Day! I'll be doing a couple of things today to mark the occassion - want to join me?

• There's a 16 hour World Diabetes Day chat happening on Twitter, beginning at 6:00 am EST and ending with the usual DSMA time slot (from 9:00 pm EST to 10:00 pm EST). 16 hours! 16 topics! 16 moderators! I'm honored to be moderating the 7:00 - 8:00 EST time slot, so tune in for some "Diabetes and History" talk with @YCDTProject; use and follow the hashtag #WDDchat12. And maybe pour yourself a drink, because it's going to be INTENSE.
• If you live in the U.S. and care about T1D, this is super important: the Special Diabetes Program, which provides $150 million annually to the NIH for T1D research, is up for renewal (it's been renewed every two years since 1997) RIGHT NOW. Call your members of Congress TODAY and urge them to vote "yes" on renewing the SDP! Losing this funding would be devastating to T1D research into prevention, treatment and ultimately curing this disease. The folks at JDRF Advocacy are asking all diabetes advocates to call Congress on World Diabetes Day (you can use this brand new website they're launching today to call them - no need to look up phone numbers if you're a JDRF Advocate!) about SDP renewal, so do it!

The Nebraska State Capitol, lit blue the night before World Diabetes Day. Nicely done, us.

Joslin Blog Project: Changes.

I'm honored to be participating in Joslin Diabetes Center's Blog Project this month, alongside a handful of other dedicated and passionate diabetes advocates. We'll each be writing four posts that detail our personal journey with diabetes, in the hopes that we can raise some awareness along with some money. Our goal is to raise $5,000, as a team, for the Joslin High Hopes Fund through this blog project.

Our prompt for this week is: "What were the biggest changes you went through after diagnosis, and what were (if any) small things you didn’t realize would change?"

I'm told that when I was asked what I missed about life before diabetes, my six-year-old self replied, "Macaroni and cheese. I want more of it."


Exchange diets FTL!

So many things change when you are diagnosed with type 1 diabetes, and all of a sudden your everyday life starts to resemble that of a highly-regulated pincushion. Food isn't just this thing you eat anymore; it's a mysterious math equation you must solve with each meal and snack. Having a cold doesn't just mean a stuffy nose and sore throat; it can mean wildly fluctuating blood sugars that refuse to be tamed, and which make you feel just that much worse. Running around the neighborhood park at the end of your street is never again a spontaneous activity - you have to plan, pack, eat, and test.

In short, diabetes adds a layer of "ugh" to everything you do.

While diabetes did introduce many changes to my life, what I find most interesting is what didn't change. It didn't prevent me from playing soccer (for one season, I think, and I wasn't so great at it), softball (I was slightly better at this than soccer), or the piano (I could play Chopsticks like a pro). Diabetes didn't stop me from years of dance lessons - ballet, tap, and jazz. It didn't hinder the four years of high school choir or cheerleading, and it didn't stop me from having fun with my friends - birthdays, slumber parties away from home, and a senior class trip to Colorado, sans my parents. A faulty pancreas didn't prevent me from pursuing a college degree many miles away from home, or from stubbornly moving 1,400 miles away to live life by my own terms for a while, or from dating and marrying my very best friend.

Diabetes may change the "how", but it doesn't change the "what".

If you would like to make a donation toward our $5,000 blog project goal for the Joslin Diabetes Center, you may do so here.

Joslin Blog Project: The Beginning.

I'm honored to be participating in Joslin Diabetes Center's Blog Project this month, alongside a handful of other dedicated and passionate diabetes advocates. We'll each be writing four posts that detail our personal journey with diabetes, in the hopes that we can raise some awareness along with some money. Our goal is to raise $5,000, as a team, for the Joslin High Hopes Fund through this blog project.

Our prompt for this week is to "share a story from when you (or the person you blog for/about) were first diagnosed".

It's tough for me to remember much about my diagnosis with type 1 diabetes, over 26 years ago. I was just six years old, and anything that didn't involve My Little Ponies or She-Ra is pretty fuzzy in the memory department. (As it should be?) I do have faint recollections of my hospital stay and of the friends and family that came to visit me, and I recall bits and pieces of learning how to prick fingertips, how to administer injections, and how to count the food I was eating.

Notes from my original diagnosis records.

More than any of that, I remember the emotions of those around me. I may not have known what diabetes was, but I knew that it was serious. I knew it was bad. I knew that it brought the people I loved to tears. I knew that life was changing for me in big ways. Emotions play a huge role in diagnosis, just as they continue to do in our daily management.

But as for a concrete diagnosis memory? I'm afraid I don't have one related to my diabetes diagnosis. I do, however, want to mention something that I'm sure the Joslin Diabetes Center didn't realize (because I've never mentioned it) when they asked me to participate in this blog-o-rama: it was a Joslin endocrinologist who finally diagnosed my hypothyroidism over ten years ago.

That doctor was compassionate, kind, and thorough. His team bothered to find out what meter I was using, and got me an updated replacement (which meant I would likely be getting more accurate results to work with). He recognized the thinning hair, the pallor of my skin, the gradual weight gain, and the extreme exhaustion - the extended period of time that my thyroid condition went undiagnosed wrecked havoc on not only my physical appearance, but my mental health as well. He didn't scold me as past doctors did when he saw that my blood sugars were all over the place; he didn't rush to the assumption at my appearance was completely my choice (did I mention that this time period was my goth phase?); he didn't dismiss my sullen demeanor.

He looked at the whole person. He looked at me.

And because he was willing to do that, he found an answer that I'm not sure my previous doctor had even thought to look for. As we worked to find the proper Synthroid dose for me, bits of myself came back to the surface. Depression had griped me for so long that I hadn't realized how much of myself wasn't present anymore.

That doctor may have, indeed, saved my life. For that, Joslin Diabetes Center will always have a special place in my heart.

If you would like to make a donation toward our $5,000 blog project goal for the Joslin Diabetes Center, you may do so here.

The Words We Choose.

To the marketers, communicators, fundraisers, educators, healthcare providers, medical students, and everyone else who wants to talk about diabetes in a public way:

Please choose your words wisely.

When your "awareness" pitch uses language like suffers from, I have to assume that you have little to no idea what living with diabetes is really like. I'll clue you in: we don't want pity. Most of us are not suffering. We want empathy, not sympathy.

I've had type 1 diabetes for 26 years. Do I look like I "suffer" to you?

When you talk about diabetes in generalities; when you fail to specify the type of diabetes you're talking about; when you use one word to try to encompass and summarize the colorful spectrum that is diabetes - you sound ignorant. And we stop listening.

When your header image pairs up a familiar diabetes awareness logo with a guy holding a triple cheeseburger, I'm disgusted and ashamed... for you. Not for me.

When you communicate, you need to know your audience and how they want to be communicated with, and then follow that. It is your job to enlighten without offending. It is your duty to advocate without resorting to fear and shame. You must be more mindful because what you say and how you say it has far-reaching implications on how everyone views diabetes.

When you communicate, you are positioning yourself as a voice of authority. You are trying to speak for me even if I don't know that you are or want you to, and there are ways to do that which won't degrade me or my disease. Want to know what they are? Go peruse the diabetes online community. Read some tweets and blogs. Watch the videos we make. Or, I don't know, crazy idea here: go find some actual people living with diabetes and talk to them.

Empathy, not sympathy.

Words are important, and you need to choose yours oh, so carefully. Otherwise I'm voting that Diabetes Awareness Month needs to be followed by Blood Pressure Awareness Month.

The next time you go to write one of these things, let me suggest something: try a little more hope and encouragement. Try using facts without layering them with blame, and address us and our condition respectfully. Try talking about people with diabetes as if they are just that... people.

A little respect goes a long way.

We're Getting Smurfy For Diabetes.

There's a lot of blue going on around here...



Since JDRF isn't using this logo anymore, could this be considered
a vintage scarf? How fancy!



Nevermind the eye puffery - I just woke up.

..and later today I'll be contributing to the "Diabetes 11.11.11" project. Will you? (Could you, would you, while you wear blue?) /end Dr. Suess moment

Cleaning Out The Ol' Inbox.

My email volume has gone from intense to WHOA lately - it seems PR folks have found me, which can be both good and bad. Sometimes they're all "Dear Blogger, please talk about how our cinnamon-based diet can cure you" (that's the bad, and makes me want to point them here), but other times they send a thoughtful, personalized email (that's the good) telling me about something, and ask if I would mind checking it out/sharing it/writing about it. Some of it is totally legit, and some of it I'm really not sure about - so you'll have to decide on those things for yourself.

Also, there are a couple of things I could mention that fall into the "stuff I did when I wasn't here" category, so things are about to get bullet-pointy again.(Twice in one week? I know.)

• A website called Sharecare named what they believe to be the top ten "influencers" in the diabetes online community, and somehow I ended up on that list. If you're like me and have absolutely no prior knowledge of what Sharecare is, they are self-described as an "interactive, social Q&A platform designed to greatly simplify the search for quality healthcare information". The website was formed by Jeff Arnold (founder of WebMD) and Dr. Oz. While I may not personally be the biggest fan of Dr. Oz, I do appreciate that the Sharecare site is trying to connect people living with diabetes with each other. I can always be on board with that idea.
• And apparently I'm also influential about diabetes on Twitter?
• JDRF and the Helmsley Charitable Trust (which is a name a lot of folks recognize, but I wasn't one of them until recently) have begun a collaboration which you can read about here. Also, you may have heard that JDRF has a new logo, tag line, and put a bold ad in the Washington Post and NY Times. (Yes, I'm a little slow on the reporting here, but better late then never.)
• Someone at Three Rivers Press (a division of Random House) sent me some information about a recently released book written by someone who is both a PWD (type 1) and a creative director at Nike named Chuck Eichten. The book is titled The Book of Better, and here's their description: "The book is designed to be for everyone: Type 1, Type 2, adults, children, people who have been living with Diabetes for years, or have just been recently diagnosed - even people who are completely unfamiliar with Diabetes will find something here. It’s ultra-visual, resoundingly positive, and completely different than any other book about Diabetes out there". They're also sending me a free copy of the book, so I'll be interested to know if that last claim is true.
• The folks at Glooko asked if I could review their "MeterSync Cable and Glooko Logbook App", but seeing as how I do not own any of the devices it works on, I can't really do that. It sounds neat, though! According to their email: "[These] are our first products. [They] are simple tools (a cable and an App) for people with diabetes to download their meter to their iPhone or iPod touch. Our first product is simple for two reasons 1. Make keeping a logbook easier and make it easy to share that information with whom ever needs it, and 2. Keep within the regulations that the FDA has put forth regarding a Class1 device."
• A company called Socks4Life has been making a conscious effort to be more involved with the DOC, which is pretty cool (even if "diabetic socks" aren't). They sent me a link to this infographic that is available for anyone to distribute/use as they see fit.
• Speaking of infographics, United Healthcare (!!) sent me a link to theirs as well.
• dLife kicked off Big Diabetes Month with a new initiative called "Declare. Share. Move Forward." designed to help PWDs acknowledge obstacles in their diabetes lives, and then move past those challenges. You'll find some familiar faces (including mine, for a brief moment) in the introductionary video!
• DRI has their own campaign this month as well: Reason to Believe, emphasizing their focus on cure-based research. You can watch videos from parents, researchers and patients who express their own "reasons to believe".
• And lastly, if you haven't participated in the Big Blue Test, please do it. The goal of 8,000 participants is still a long ways away, and there are only four days left, and a lot of money for charities at stake!

T1Day.

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

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






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

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

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

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

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

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

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

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

How We Spent November.

The highs and lows,
The post-meal spike;
We spent this month
Sharing what it's like.

Diabetes Awareness Month is ending,
And with it, November -
Let's recap the month, and
See what we remember!

We took the Big Blue Test
and our results, online we would post
We watched the video over and over
To get insulin to the kids who need it most.

World Diabetes Day was busy,
As it also played host
To Type 1 Talk events
That took place from coast to coast.

We learned Six Things about each other,
We discussed our "Civil War".
We counted our diabetes blessings,
And celebrated a new "score".

I talked about That Other Thing,
And others shared theirs.
Our diabeTees were so awesome
They probably drew stares.

We wore these pins,
We wore our blue.
We wrote our letters,
And shared our view.

We can look forward to a lot,
But there's much yet to do.
The road to better technology and treatments
Starts with me and you.

People with diabetes want understanding and respect -
And some glitter and Diet Coke; sure.
But awareness and advocacy will keep on going
Until we can victoriously shout, "Cure!"