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Posts tagged ‘Twitter’

How Real Do You Want It?

Over the last few weeks, I’ve been watching the articles about Lisa Bonchek Adams circle, ranging from the New York Times opinion piece by Bill Keller to the one written by Emma Keller (his wife) for The Guardian (which has been removed from The Guardian site but lives on in the archives), to the response piece written by Brian Loew at The Healthcare Blog and analysis by Susannah Fox on the Pew Research Center Fact Tank blog.

(That’s a lot of links in one paragraph.  I’ll wait while you click.  And please note that none of those links go to any dancing gerbil .gifs.   But this does.)

Lots of discussion about a patient who is sharing raw and unfiltered details of her experiences with cancer through social media venues.  For better or for worse, this is the new scrutiny of health on the net, and of real life chronicled on the Internet.

“Are those of us who’ve been drawn into her story going to remember a dying woman’s courage, or are we hooked on a narrative where the stakes are the highest? … Would we, the readers, be more dignified if we turned away? Or is this part of the human experience?” – Emma Keller

For me, chronicling my experiences with diabetes, it’s not for the “outsiders” who are looking in; it’s for the people who share that same condition, same disease, same struggle and who learn, thrive, and persevere through the power of common community and understanding.  Readers may have the option to “turn away,” but for those who live with chronic illness, we have no choice but to look directly into it.

Is there a right way to deal with illness?  A wrong way?  How real do you want it?

 

I learned about living with type 1 diabetes, and the “forever” journey that it is, through other people who had it.  Blogging wasn’t the first time I came into contact with other people living with type 1 diabetes.  Community came through the Clara Barton Camp in North Oxford, MA, where every camper had type 1 diabetes and almost every staff member does, too.  But there was a lonely, isolating gray area between aging out of camp and the coming-of-age of the Internet where diabetes was difficult for me.  Being a teenager, and then becoming an adult, was a tough transition, and even though I had a good support system through my family, friends, and medical team, I was lost in a sea of people who didn’t understand how light diabetes could feel on some days and how heavy it was on others.

Some people are uncomfortable with the idea of sharing so much private, personal health information on the Internet.  Hell, I totally understand that sentiment, as I was fumbling through Facebook yesterday trying to figure out how to delete people I hadn’t interacted with in years.  It’s not a flippant decision, the one to advocate for your own health and to share your story.  Scrape past the hesitation and the fear, however, and you’ll find people who are empowered by sharing, and lifted up by a community that has intrinsic knowledge of the places that hurt the most.

Over the last few years, I haven’t felt the “diabetes won’t stop me!” mentality I unwittingly held close for the first two and a half decades with this disease.  Though my health is still good and I am grateful, I’m seeing the emotional and physical manifestation of years with type 1 diabetes in sometimes small, and other times enormous, ways.  Patients with diabetes are writing about climbing mountains and running marathons and giving birth, but we’re also writing about complications like depression, eye disease, and eating disorders.  Even if it makes you feel uncomfortable, it’s real.

Being honest about life with illness and disease can be the best, albeit non-prescribed, ‘medication’ yet.  While it may also frighten and unnerve, honesty and community can validate, and empower, and inspire.

To quote Morgan Gleason, the fifteen year old who contracted meningitis while getting an infusion for an autoimmune condition:  “I am the patient.  I need to be heard.”

What is a Diabetes Advocate?

Last night’s #dsma chat was a terrific one, focusing on how people in the diabetes community define “advocacy.” I wanted to summarize it here (at least the parts that resonated for me) because it could serve as a catalyst to inspire.

[For information on what the #dsma chat is, click here. And to learn more about connecting with people with diabetes on Twitter, click here.]

The community shared their advocacy “origin stories:”

And then we compared notes on what we’re most passionate about:

… segueing into reasons why that topic is something that touches our advocacy hot spots (sounds sassy …):

But of course, the road towards getting something done is often paved with obstacles. For many of the folks on the chat, “fear” played a huge role in holding us back:

So how do we, as the “diabetes ONLINE community,” remove the Internet component and bring advocacy offline?

Not everyone has to be an advocate for diabetes, and not every advocate raises awareness in the same way. But every voice matters, and no effort is too small. How do you advocate for diabetes? And how can we, as a community, help move your efforts forward?

Medtronic Diabetes Advocate Forum: Meaning Trumped Marketing.

A few weeks ago, I was invited to join some of my advocacy colleagues for a meeting in Los Angeles, CA at the Medtronic Diabetes headquarters.  This event was put on by the teams at Medtronic and Bayer, and they covered travel, lodging, and expenses for attendees.  (Disclosure out of the way.)  The agenda included “interactive sessions on the latest diabetes technology, more time to pick the brains of our executives, and a long discussion about diabetes social media advocacy.”  The meeting took place this past Friday and Saturday.

The beginning of the summit was admittedly not my favorite, but felt like a marketing necessity.  There were presentations by Katie M. Szyman (President, Medtronic Diabetes) and Marc O’Donnell (Vice President, Regulatory Affairs at Medtronic) that, despite the accessibility of the presenters and how they made themselves available to a group of advocates, felt somewhat sales-pitchy and on occasion, defensive.  I understand that sales need to be pitched and regulatory discussions need to be carefully had, but hearing about the new Enlite sensor or hearing about people with diabetes talked about in marketing terms (for better or for worse) is not my personal mission.

Even though I’d been invited to the previous two summits, I wasn’t able to attend due to work, so this year was my first time.  The fact that the team at Medtronic kept me on the invitation roster spoke volumes to me, because they didn’t let my existing competitor relationships [disclosures] preclude me from being part of an advocacy discussion.  Representatives from Medtronic encouraged attendees to voice concerns of all kinds (good and bad) and didn’t shy away from difficult conversation topics (like “Calling the 530G an ‘artificial pancreas’ was misleading,” and “Your sensor hasn’t been a good fit for me.”)

But meaning quickly trumped marketing, and that remained the theme of the event.

What cemented this meeting as one of the most powerful ones I’ve attended in some time, was the discussion lead by Dr. Francine Kaufman.  When she started talking about the needs outside of our privileged bubble, highlighting how diabetes is managed in different countries, a heavy cloak of awareness and responsibility seemed to fall over the attendees.  Boxes of Kleenex were passed around as we were reminded, as a group, how “perspective” is defined by “access.”

What happened later in the afternoon was nothing short of amazing, when the room full of advocates took the conversation that Fran started and owned it.  A discussion about Spare a Rose efforts for 2014 became an exercise in implementation as people brought their advocacy strengths and assets to the table and offered them up.  All voices were heard and a group oft-frustrated by a lack of forward movement at meetings like this took action to ensure that more action would be taken. In short, a plan was needed and a plan was put into place, with details (and THANK YOU’s) to be issued in the coming days.

This summed up the entire summit for me, in one Tweetable-bite.

It was a privilege to be in the room, for many reasons, but largely because it was a privilege to try and make the voices heard of those who weren’t in the room.  It can be scary to speak up.  It can be intimidating to try and make a difference.  And the endless threats of rules and regulations can keep ideas from blooming out of fear.

But honestly?  We should fear inaction more than action.

Thanks you to Medtronic and Bayer for hosting these discussions, and to the DOC for having them.

Another #DayOfDiabetes, Twitter-Style.

For World Diabetes Day yesterday, I attempted to participate in another round of #dayofdiabetes, using Twitter to log the different nuances of a day with type 1 diabetes.  It was a tougher day than normal, Internet-wise, because I spent the morning in the plane and the rest of the afternoon with very limited access to Wifi, but it was World Diabetes Day, damn it, so I wanted to try.

My #dayofdiabetes started early … like 2.10 am kind of early, with a low blood sugar and a buzzing Dexcom:

But thankfully, glucose tabs handy on the bedside table made fixing this number easier:

Glucose tabs help keep me from over-treating, because they are carefully portioned out and not appealing enough to have an urge to eat sixty of them.   It feels like a win, not over-treating a nasty middle-of-the-night low.  I was relieved to check in the morning and see that I wasn’t off the charts.

And then I was off to the races … or more specifically, the airport, to travel to Mississauga for the Peel Chapter JDRF Research Symposium.

The low from the night before still hung around in the form of exhaustion, though.

And airport food offerings weren’t substantial enough to fix what ailed me.

Later in the evening, it was time to dress/device juggle:

Never a simple task, especially with disco boobs:

The night at the World Diabetes Day event was lovely, but I did miss participating in the discussions online, particularly the World Diabetes Day 24 hour chat that took place all day yesterday.  Community and peer-to-peer connections keep me as healthy as my insulin does, some days.

And this morning it all starts again, with a blood glucose check on my meter and that instant yearning for a cup of coffee.

Every day is a #dayofdiabetes in my life, wifi or not.  It was amazing, catching up on the Twitter feeds of others who were participating yesterday.  I learn so much about how individualized everyone’s diabetes truly is through this project.

Here is some info, if you’d like to participate in a #dayofdiabetes, and a primer on Twitter and the diabetes community.

 

Hard to Capture.

With Twitter as the medium, there’s only so much that can be captured with only 140 characters at your disposal, especially when there are always so many juggling balls aloft.  Since it’s mostly intrinsic, these thought processes, I forget what parts are unfamiliar to people who aren’t living with diabetes.  After looking back at the Storify-version of my #dayofdiabetes experience, there’s so much there, but at the same time, there’s so much missing.

How can I explain how hard my family has worked to make sure we have insurance coverage?  And how the guilt of 16u of insulin left in my pump sometimes forces me to change the infusion set that’s in my skin in order to squeeze out the last of the insulin from a cartridge before changing that part out?  Insulin pump site changes aren’t always done “in full,” with the cartridge and cannula changed simultaneously.  There have been years in the last two-plus decades where we’ve paid nothing for insulin, and then pockets where we’ve paid the full cost.  Knowing how swiftly things would go bad if I didn’t have access to insulin is humbling.

Or the guilt that comes with this kind of mistake.  I very rarely forget to bolus for the food I’m eating, but that day, the toddler wolfed down her lunch and then was ready to bolt outside and play, and as I was cleaning up the neglected turkey and cheese sandwich, I polished off the second half of it.  And then promptly forgot to bolus.  “Frustrated” doesn’t really begin to touch the rage and guilt that sets in at this point.  I hate that there is so much about diabetes that remains out of my control, but when I can pinpoint exactly where my day went off track and it’s the result of something I forgot to do?  I have a hard time with that.  The guilt that ends up folded into so many parts of the diabetes decision making process can be intense, and relentless.  “I’m high because I was stupid and forgot to bolus for something that clearly carried a pile of carbs.”  If it were anyone but me, I’d tell them to just correct the blood sugar and try to move past the guilt part – “There’s no point in feeling guilty!  That just adds to feeling rotten.  Correct and move on.  Keep trying your best.” – but I’m not able to take my own advice.

It’s not simply guilt that’s hard to capture; sometimes it’s hard to really explain why a moment might make me so freaking proud.  Like the fact that a gross high blood sugar derailed me for a couple hours, but I still made exercise part of my day.  Exercise used to be something I actively (ha?) avoided, but slogging my way to the gym even though I felt crummy, and then leaving feeling better, and empowered, and more in control makes me feel proud.  It’s not a big deal, and it’s not a victory that anyone else would notice, but it was a good moment for me.

Same with graphs like this.  I have worked hard to make sure my overnight basals are solid, and that I’m able (for the most part) to go to sleep at an in-range blood sugar and wake up in the same in-range ballpark.  This isn’t an accident -  this is a most intentional moment.  It’s hard to capture why a Dexcom graph that’s between the lines matters so much because it seems like it’s the result of a block of time “without incident.”  It’s hard to explain how much work goes into keeping these moments as incident-free as I can manage.

A day with diabetes looks a certain way, all tucked into Twitter with a neat little hashtag.  But it’s hard to capture what we really do every day, as PWDs or caregivers.  Outside of this DOC-bubble, people wouldn’t understand high-fiving over a blood sugar result of 180 mg/dL (but did they know you were 230 mg/dL an hour earlier?).  Or why a person with diabetes would eat sugar tablets (but did they know your blood sugar was 34 mg/dL?).  Or why a “sugar-free” pie still requires carb counting and insulin (“But it’s sugar-free!”).

Participating in #dayofdiabetes was eye-opening for me, because I realized I didn’t have enough API to handle updating Twitter as much as I needed to, to account for all the times diabetes crossed my mind throughout the day.  And then again, I realized how many times diabetes crosses my mind for simply an instant, letting me continue forward in a day that, in reality, wasn’t owned by diabetes in the slightest.

A #dayofdiabetes.

There’s not much of an option for a day without diabetes, but sometimes the friends and acquaintances I’ve made through social media aren’t as acutely aware of the food math and thought process behind each insulin dose decision, so I’m jumping on the #dayofdiabetes bandwagon. Chris Snider at A Consequence of Hypoglycemia took up the challenge of “live-tweeting” a day with diabetes, and then Storify’d it, giving readers a 24hr glimpse into a full day with T1D.  I loved reading his Tweets, and after following Cherise’s go a few days later, I wanted to join in the storytelling.

I took this concept for a spin back in 2007, when I tried on my first CGM (the Dexcom STS, which was only cleared to work for three days and wasn’t waterproof, so you had to slap this giant plastic bag-type shower patch over it so you could clean yourself).  There have been some “all day diabetes” Twitterers – didn’t Bernard do it on World Diabetes Day one year? – but this new iteration will hopefully inspire other PWDs and people with different health conditions to share their story.   (My first Tweet ever was about the Dexcom sensor – does participating in #dayofdiabetes mean my social media matrix may fold into itself today?)

I started my live-Tweeting journey this morning, and I’ll be working straight through to tomorrow morning.  Hopefully it will be boring as can be, with numbers sorting themselves out all happily between 80 and 120 mg/dL, but even a day of in-range numbers comes as the result of a lot of work, and a lot of little, nit-picky diabetes management moments.  I definitely don’t log every diabetes-related physical and mental task throughout the day, but for the sake of the experiment, today I will.

A day of diabetes, running live through Twitter for the day.  If you want to follow along for the day, I’m at @sixuntilme.  If you’re interested in telling your story for a day, adopt the #dayofdiabetes hashtag as though it were a sweet, adorable, lumbering puppy scampering towards you on impossibly uncoordinated legs.  And if you want to take a look at Chris or Cherise’s live-Tweet sessions, pop over to the Day of Diabetes Tumblr account for a snapshot view.

Diabetes and Twitter: 101.

One of the Friends for Life sessions that I co-lead with my favorite tall guy, Scott Johnson, was about finding diabetes support through social media.  (More on that session this week, but I wanted to get this post up today because there’s a diabetes chat that takes place on Wednesday nights.)  While that session had it’s own discussion points and a broad definition of what social media really is, the same question came up over and over again:

“Twitter?”

It wasn’t even a whole question, more like a word thrown out to the crowd and lingering there, confused about where it should roost.  Twitter is a completely and utterly confusing concept to people who aren’t involved in that method of communication – hell, it’s chaos for those of us who are familiar with it, too.  But aside from questions about how to start a community or blog, and how control sharing on Facebook, some people really wanted to know how to navigate the muddy waters of Twitter.

In efforts to answer some of those questions from the session, I wanted to give a little Diabetes and Twitter 101 here, with links to resources, to help those who want to find people talking about diabetes on Twitter.  Here’s the crash course:

slider image twitter

What is Twitter?  Twitter is a method of online communication where you share status messages in 140 characters – and no more than 140. It’s sharing in snippets; it’s microblogging.  It’s borderline annoying because you end up completely over sharing (“I thought about eating a ham sandwich in the alleyway … but then didn’t.”), but it’s a very unique, very real-time, very insightful way of connecting with people.

  • Why would I want to share these details online?  That’s a really good question.  Some people are very comfortable sharing details of their life, and links to things they think are interesting, which is where Twitter comes in.  It’s like an RSS feed for your brain, and it helps lead you to new info on topics that interest you and from people who do the same.  (If you’re concerned about privacy, you can always keep your account “locked” instead of “public.”)
Hashtag central

Diabetes-related hashtags include word/phrases as obvious as “diabetes” but may also include things like “#ffl11” and “#sweatabetes.”

  • What is a Tweet?  A Tweet is one, single status update from a Twitter account.  Oh, and it’s also the sound that a bird makes.
  • What is an @reply?  When you put the “@” symbol in front of someone’s user name, it tells that person that the Tweet is directed at them.  It’s like sending a 140 character email, in public.  (Also, you know if a Twitter account is shifty when they don’t have any @replies and/or aren’t following anyone.  Twitter is a conversation, not a billboard.)
  • What is a DM?  A DM (or “direct message”) is a 140 character private message that you can send to a fellow Twitterer.  You can only direct message people who are following you back.

How do I join, and what do I do there?  To sign up for a Twitter account, go to Twitter and register.  You’ll sign up, you’ll be shuffled to your homepage, and there you can post your first status update, find people to follow, or just lurk on other people’s accounts.

So I’m on Twitter.  How do I find my fellow PWDs?  Okay, so once you’re on Twitter, now you can dive Tweet-first (?) into the diabetes community there.  Finding your fellow PWDs can seem challenging, but there are tricks to help you sniff out the pancreatically challenged and those who support them.

  • You can use Twitter Search to seek out the diabetes community by searching for specific search terms or hashtags.  Try searching for something as simple as “diabetes,” or something as specific as “Dexcom.”  You can also conduct searches right on the Twitter homepage, like for “diabetes.”
  • You can also use the mother of all diabetes hashtags:  #dsma.  “#dsma” stands for Diabetes Social Media Advocacy, and it’s the brainchild of Ms. Cherise Shockley.  On Wednesday nights at 9 pm EST, hundreds of people with diabetes log on to their Twitter accounts and crowdsource answers to questions asked by the DiabetesSocMed Twitter account.

It’s pretty simple:  The @DiabetesSocMed account asks questions and numbers them, and then when people respond, they just answer with the question number and the #dsma hashtag in their Tweets.  For example:

An example of the #dsma Twitter discussion questions

There’s the question (Q1) and my answer, tagged with both “Q1″ and “#dsma.”  The only trick is that during the actual #dsma chats, there are many participants, so there are many questions and answers streaming at once.  It can be a little overwhelming at first, but after a few run throughs, you’ll be a pro.

  • And even though you’re using Twitter, you aren’t limited to using “just Twitter” to send out or read your Tweets.  There are a lot of third-party applications for Twitter that you can download to your desktop or use a browser for.  Here are a few of the ones I use:
  • Tweetdeck.  This is my favorite application and the one I use most for Twitter.  It’s clean, easy to use, and runs pretty seamlessly on my laptop.
  • Seesmic.  I used to use this one all the time, but I kept blowing out my API.  (What does “API” stand for?  Available Peanut Index?)  Seesmic can also be used to update your Facebook and Twitter status, so it’s kind of handy for all things social media.  (Tweetdeck can, too, actually.)
  • TweetChat.  This is a web application where you can type in the specific hashtag you want to follow (for example: #dsma) and all of the Tweets tagged with that hashtag stream on the TweetChat page.
  • Twitpic.  This app helps you share photos on your Twitter feed.  You can take photos on your phone or upload them from your desktop and ship them straight to your Twitter stream.  (There is also a pile of apps for Twitter using your smartphone, but I know what I know, and I have no idea which ones are good or bad.  Consult your local TechNerd for some details and a cupcake.)

Phew!  Crash course on Twitter and finding your fellow PWDs?  There’s at least a start.  I hope this helps, and if you’re looking to jump right in, you can join the #dsma chat tonight at 9 pm – the only thing we’re missing is YOU.  Join the 140 character conversation … and make sure you have coffee on hand.  It’s the most whirlwind hour of diabetes discussion on the web.

(And I’m adding a diabetes Twitter list to the blogroll page, so if you’re a PWD with an active Twitter account, please email me your Twitter handle and I’ll add you to the list!  You can find me on Twitter at @sixuntilme.)

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