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Posts tagged ‘community’

Dexcom SHARE: First Impressions.

“Your thing is going off.”

Though nondescript, that phrase is a loaded one.  It is Chris-speak for, “Your Dexcom is making an alarm of some kind; you need to take a look at it.”  And now that the Dexcom SHARE application is feeding my glucose results to my husband and a few other authorized viewers, when the thing goes off, other things go off and people are notified.

And by way of notification, I’m disclosing right here and now that I have a relationship with Dexcom.  It’s kind of serious, and I look forward to when they meet my dad.  Details here.

I’ve been using the Share for a few weeks, and have had some time to give it a good once-over.  My take on the SHARE 2 application itself:

  • Overall, my data transmits pretty seamlessly from the receiver to the phone, but there have been weird times when the data just stops.  (When I’m on a plane, this makes sense.  When I’m at my kitchen table, it does not.)
  • Essentially, that means I am poking this fine little fella in the face several times a week, to help jump start whatever is borked in transmission.  If he were less cute, I wouldn’t feel so bad about jamming my index finger into his jaw.
  • It feels weird to have to put my password into the app in order to access the “followers” screen.  Why protect that specific screen, but not the others?
  • I thought having the option to only add five followers would feel limiting, but in fact, the ability to share my CGM data has not made me want to broadcast my stuff to the world.  Five followers is fine so far; right now, I have my husband, a close friend, a doctor-who-is-not-my-doctor-but-we-are-trying-something-out-for-the-sake-of-SCIENCE, and myself.  And yes, I have added myself because I wanted to be able to access my data alongside the data of those who I am following when I go into the Follow app.
  • (Does any of that make sense?  Let me know if it does not.)
  • Also, iOS only?  Frustrating because anyone who is not using an iOS device can’t be added to my network.
  • The alarms that are issued through the phone are wicked loud, and very useful.  I recommended that Chris keep my high alarms off and only receive notifications for hypoglycemia, which is working out reasonably well.  (Especially when I am traveling, and can respond to his, “Eat something,” texts with a quick, “Already did.”)
  • The application doesn’t seem to eat up my battery life on my phone or on my receiver, which I appreciate.  I feel like the Share receiver holds battery life better than my previous receiver.  I charge it once a week and even then, it’s not drained.
  • I forget that the application is on and working because 85% of the time, it’s on and working.  I rarely switch it off because it doesn’t impact my battery life (or actual life) much to keep it on.  Except when it becomes emotionally charged, which is a whole different point and one I tackle a bit further down.
  • Using the receiver that’s Bluetooth enabled versus the dock you had to plug into the wall is obviously an upgrade, and contributes to ease of use.  Also, it’s easier to pack.  And harder to forget.

And my take on sharing, in general, with this application:

  • Sharing data is personal.  Wicked personal.  And it’s a choice, one I’m grateful I can make.  Again, I can’t rework my islet cells, but I can decide what devices and treatments I use to manage this disease.
  • And sharing makes me feel a little ashamed, at times.  I can reason as to why it should NOT, but it’s a reasoning I find difficult to follow through on.  Keeping my blood sugar data devoid of emotional valuation is difficult for me.  I was raised on “good” and “bad” blood sugars, not “in range” and “out of range,” and seeing a graph that pings and pongs all over the place makes me feel weird emotionally as well as physically.
  • For example, two weeks ago I had a urinary tract infection (much like this epic one).  It was nasty, and both the infection and the antibiotics for it sent my blood sugars into the stratosphere.  This glucose saturation was sent up to the cloud and pinged out to the people I trust.  None of them knew I had an infection, but I felt the need to say something about said infection so they’d understand why my numbers had gone bananas.  I felt good about having people I trusted so much that I knew they wouldn’t judge me, but at the exact same time, I felt the need to explain myself.  My knee jerk response of justification kind of flies in the face of the security and trust.  And it’s not because of them or how they judge me, but because of me and how I judge me.
  • Same goes for the following week, when I was on another medication (everything is fine, by the way – just a flurry of things all at once) that caused wicked blood sugar spikes.  We’re talking HIGH with arrows still pointing up.  I took a bolus that put every other bolus I’ve ever taken to shame.  And after a few hours, I mentioned this medication to those with access to my data because I felt the need to explain the numbers.
  • Which opens up my “what the fuck” mental folder, where emotional responses to diabetes end up filed.  On the one hand, I really like having a loved one or two able to see my data because that their access offers up a safety net I’m very grateful for (and have written about several times).  Also on that hand is the accountability that works to my benefit.  As I told my friend who has access to my CGM data, the commiseration angle is empowering because it makes me want to rein things in faster than if I was the only one looking.  Blood sugars on display are ones I watch more carefully, for whatever reason.
  • But on the other hand is my desire to turn off the data sharing because I want to let my blood sugars stutter and splutter without scrutiny.  I want to fail, or do what I perceive as failing, in private.  Sometimes I want to leave the Sharing option on only throughout the nighttime hours, or exclusively when I’m traveling, so I can keep a foothold on my dignity.  Not that my numbers are shit all the time, but the past two weeks have been tough even for me to see, and I’m familiar with my own bounce.  (And there I go again, explaining away the things that make me feel ashamed.  This is part of the fuckery, because my management does not come easily to me, and I try every single day to work these blood sugars out.  I test and exercise and track and eat well and truly make efforts and yet blood sugars bounce.  I can blame diabetes, but since the due diligence list is so long, there’s always something I can look at and blame myself for.  Which is a fun dance.)
  • Have I mentioned that sharing data is personal?  Let’s go back to that for a second, because it is.  And the level of sharing that works for me on days when my blood sugar is 94 mg/dL and holding steady is very different than when I’m riding out a 287 mg/dL for three hours.

I’ve made no secret of the fact that I appreciate options, and the option to Share is one I’m happy to have.  Coming full circle, I can choose to share or not share.  I can also turn off accessibility to others with the click of a button.  Honestly, I am grateful that I have a network of people I trust with this kind of personal data because it’s some soul-baring kind of shit.  And as an adult, I can decide how these data are dealt with because they are mine.

Maybe, with time, I’ll stop viewing these data as little dots of validation and instead as information to help me live better.

 

Unraveling the UnConference.

Thanks to the vision, dedication, and determination of Christel Aprigliano, the first Diabetes UnConference came together in Las Vegas last weekend.

“Wait, what?  I didn’t see anything on Twitter or Facebook!”

And that’s because there was a social media blackout on the whole conference during the actual course of it.  No live-Tweeting, no live-blogging, no live-streaming.

As my daughter used to say: “nuffin.”

Which is something I admittedly didn’t agree with, at first.

I always view conferences, both professional ones like the American Diabetes Association Scientific Sessions and the more community-based ones like TCOYD and JDRF‘s TypeOneNation, as an enormous privilege to attend.  Travel, lodging, and time for conferences can be a huge barrier to attendance, and as someone who has had channels of support that make it possible for me to attend a lot of meetings throughout the year, I feel like it’s part of my “job” to report back on how things went.  And not in a wicked journalistic sense (because my tendency to curse remains what it is and sometimes I don’t take fastidious notes but instead drink copious amounts of coffee), but in a man-on-the-scene sort of sense, trying to help fill in some of the blanks for people who aren’t able to make that particular meeting.  It’s not right that everyone can’t be everywhere they’d like to be, and the diabetes community is good about paying things forward.

[And yes, this is where my disclosure comes in.  In an effort to open up more of Christel's conference budget for crucial things like scholarships, etc., Animas was asked to sponsor my attendance as a facilitator, and they thankfully jumped on board.  I'm grateful for my personal and professional relationship with Animas and the support they have shown to me and to the diabetes community as a whole over the past five years.  For more on my relationship with the company, you can read my disclosures.]

But having a social media blackout was a good thing for the UnConference, even though it kept the conference closed.  Why was that good?  Because there was a lot of vulnerability at this conference, and it wasn’t on display for people to comment on, or document, or send out to a slew of social media followers.  Some folks in attendance were meeting fellow people with diabetes for the first time ever, and others were reconnecting and enjoying established relationships.  People talked about how diabetes affected their lives, and the things that made them feel a slate of emotions – guilty, triumphant, and all the ones in between.  To let the discussion flow without feeling the need to document it was a nice change of pace, and personally kept me in the moment.

Which was helpful, because attendees didn’t share all their “sames.”  It wasn’t an exercise in group-think, where people all said they reacted similarly to diabetes scenarios.

For example, when we were talking about burnout, many people shared their personal experiences with diabetes-related burnout, and others said that they haven’t ever experienced burnout.  I thought that was a powerful moment, because while there might be majority opinions on certain topics, the whole point of the diabetes community is that we are strong in what unites us as well as what makes us different.  One size doesn’t fit all, and neither does one emotional response.  I loved these moments because they woke me up and reminded me of the diversity of our experiences.

While I wish there could have been more people in the actual room, I know that access to conferences like this will come in time.  To that same end, half of the people in attendance were people I hadn’t met before.  It wasn’t the “same crew,” which I thought was powerful and helped shake up some of the “same scene, same people” vibe that has a tendency to dominate at a lot of diabetes conferences.  But what really resonated for me is that people felt comfortable and confident during these discussions, and I think the social media “blackout” contributed to that comfort.  Scrutiny was at a minimum and people could concentrate on being present.

Which is why, at the end of the conference when we were asked to write one word on a 3×5 to describe how we felt about the sessions, the word I wrote was “heard.”

Blog posts about this UnConference might be scarce, but to me that scarcity makes sense.  It was about sharing in the moment, not recapping after the fact.  Maybe, for once, what happens in Vegas stays there in specifics and instead makes it back into the community in the form of increased discussion, support, and connection.

 

D-Blog Week: What Brings Me Down … and Then Back Up.

Diabetes has made my body broken in ways I don’t readily admit, but I am sometimes forced to acknowledged.  People talk about my daughter’s chances of developing the disease and they always give me what they think is a comforting comment – “At least it would be the devil you know,” – but that doesn’t ease my boxed-away fears and I usually end up saying, “Yeah,” through gritted teeth because I don’t know how to explain that this disease isn’t the devil I know.  It’s the devil that I think I know, but it still tricks me and the road takes unexpected turns.

Last night, before bed, I kissed my husband goodnight and tested my blood sugar.  The second-to-last thought I had before bed was how thankful I was to hug my daughter and my mother on Mother’s Day.  The last thought I had filled a fleeting blink of a moment – “I hope I wake up in the morning.”

Diabetes isn’t just in my pancreas.  Or on my lab work printout that gets mailed alongside my electric bill and the leaflet about lawn service.

Diabetes gets right into my head, into my mind, and frays the edges of my emotional health.  I feel happy and healthy the majority of the time, but diabetes does play a huge role in the moments that make me feel vulnerable.

It’s not a “set it and forget it” disease.  It touches every moment of every day.  It impacts decisions I made decades ago, and I worry about its influence on my health decades from now.  Even something as simple as lunch isn’t “just lunch.”  The food on my plate looks more like a paint-by-number set than actual food.  It’s not a hamburger and fries – it’s 90 grams of carbs that I need to calculate insulin for.


To be honest, this Diabetes Blog Week topic makes me uncomfortable.  Not because it’s bad, but because it’s hard.  It makes rational thoughts tumble down the rabbit hole until I’m in so deep that I’m grasping at roots to pull myself out.  It’s hard to admit that, even though I don’t feel sick, I’m not entirely “fine.“  It’s hard to talk about the parts of diabetes that make me feel sad or depressed because that’s truly not how I feel the majority of the time.

But I have felt long jags of it.  Long periods of emotional confusion where, whether I’d care to admit it or not, the root cause was diabetes.  Even though I don’t want to be defined by this disease, it does explain some of my sadness.

As I wrote last September:

“I wish I had a more gracious outlook on my experiences with diabetes, but I don’t.  I wish I felt that it was some kind of blessing, but to me, it isn’t.  It’s a thorn in my side that digs in deeper with every passing anniversary, but fuck you, diabetes.  I’m tired at times, but I’m not stopping.  I’m afraid, but I’m still going.  Diabetes has brought me to some of the edges of life, daring me to look into the abyss and wonder just how long I’d know I was falling before I hit the ground, but there’s power in that.  I’m living with diabetes, with all the accompanying ugliness and arrogance, power and determination, all the perspective and perseverance and bitterness, all the fear and fearlessness that comes with any life, but is micro-scoped and magnified by a disease that never, ever takes a breath and doesn’t leave my world until I do.” 

Perspective is a funny thing, though.  Sometimes people with diabetes don’t give themselves enough credit for achieving the baseline that others may take for granted. Knowing I live with a disease that has aggressive moments and many bodies in its wake, the bad days can be really bad.  But the good days are magnified, and magnificent.  I don’t know what it’s like to be pregnant and not have diabetes, but I do know that the moment I gave birth to my most treasured Bird, the joy was indescribable because I felt like I had defied odds en route to motherhood.  Small victories fill my soul because I know they are the result of my hard work.

This is damn hard work, with the reward for a “job well done” being the opportunity to do it all again tomorrow.  On some days, this relentless cycle can bring me down. But it doesn’t take much to fill me back up.

And I am grateful for a body that, despite not making insulin, still knows how to make joy.

 

Nine Years of Blogging.

Today is my blog’s ninth birthday.  Tomorrow starts year ten and I still stand by the words I wrote in my first post, back in 2005:

“The purpose of this is to make contact with other diabetics. It’s one of those diseases (or maybe they’re all this way, I’m not sure) where even if you have the mechanics of it completely mastered, the psychological battle is just as daunting. Every time I test my blood sugar, the result stirs me up emotionally. If I’m high, I feel guilty. Or surprised. Or angry. If I’m low, I feel anxious. And slightly panicky. Or confused. A normal reading level might make me feel cocky. Or successful. But they all make me feel something. And it’s not just physiological. There is so much involved in the daily maintenance of diabetes that a support network isn’t just nice, it’s necessary.”

Thanks to everyone for continuing to read, to share, and to expand the definition of “support” with every word, meet-up, and friendship forged.  The DOC is as important to my emotional health as insulin is to my physical health, and I’m thankful for the opportunity to be a part of it.

Or, if this were an SAT analogy, I’d write that as:

Insulin : Physical health : : DOC : _______

a.  Concrete
b.  Frogger
c.  Emotional health
d.  Harlot

When in doubt, pick (DO)C.

If I Knew Then: Diabetes Blogging.

I wish I had known, at the outset, what a “blog” was.  When Chris suggested I start one back in 2005, the face I made was as though he had shoved a lemon into my mouth.  “A blaaaaahgg?”

I wish I had known that things like SEO would matter – not on the “I need more page views” sort of nonsense, but in terms of being found by the people I was hoping to connect with.  I started blogging in search of others who understood what diabetes in real life was like, and in starting that journey, I picked a blog title that took poetic license into account more so than SEO.  (I guess I should have included ‘diabetes’ in the title, but where’s the fun in that?)

I wish I had known how privacy concerns would change over the course of a decade. When I first started writing about diabetes, I wanted other people to find me, and I was happy to have my real name attached to my writing.  (I also didn’t know any better.)  Openly disclosing my diabetes was an asset in my pursuit of diabetes-related employment (leading directly to my job at dLife) and I was fine with being Googled.  But over time, and with the realization of how pervasive the Internet is, I wanted a less-is-more approach for certain topics.  Not everything needs to be shared, in particular moments where my family is concerned.  We have made certain decisions, as a family, but it doesn’t mean they are the right choice for everyone.  There is no “right choice,” – just varying perspectives and levels of comfort.

I wish I had known how much I needed to connect with peers who have diabetes.  I don’t know what it’s like for every person diagnosed with type 1 as a kid, but for me, there was this long period between diabetes camp and finding the DOC where I felt isolated and alone with diabetes.  I didn’t realize the missing link between “pursuing” and “achieving” my health-related goals was peer-to-peer support.  Having access to a community doesn’t make me like diabetes, but it does make diabetes feel less like something I’m inclined to hate.

I wish I had known there would be trolls.  And that they don’t matter.

I wish I had known how my writing would affect the people closest to me.  When I write about a low blood sugar that scared the hell out of me, I forget that my mother and father also read about that same low blood sugar, and it still scares the hell out of them.  My diabetes, though existing in my physical body, reaches out into my family and might scare them at times, too.

(To that same end, I wish I had known my mother didn’t know that I could pre-write posts and schedule them to go live at any given time.  For a while, my mom thought a new blog post in the morning meant I was awake and fine.  I hated taking that security away from her.)

I wish I had known there would be growing pains as the community expanded and grew in numbers, scope, and passion.  When the DOC was small, it was easy to know all the folks involved and for people to support one another.  Now, there are hundreds and hundreds of amazing voices and perspectives, and keeping up is damn near impossible.  Even the best feed reader and the strongest coffee can’t get me through everyone’s new updates, so I read as many as I can instead of reading as many as there are.  Sometimes I don’t agree with everything I read, but isn’t that the point?  For the community to expand my mind and my perspectives?  For the DOC to be the red pill?

I wish I had known that the community would be bigger than one state, or one country, or even one continent.  I wish I had known that I would find kindred spirits in London and Melbourne and Burlington.  I wish I had known that these people were there the whole time, living with diabetes just like I was, and that I wasn’t nearly as alone as I felt at times.

I wish I had known there would be a lot of people asking “How do I get involved?” Because then I’d be prepared to tell them that involvement requires participation.  You want to get involved with the diabetes community, online or off?  You need to put yourself out there, even just a little bit, and make yourself available.  Volunteer at local JDRF or ADA events.  If support groups don’t exist, start one.  If you want to become more connected online, go to where many people are connecting (try #dsma tonight, even!).  Start your own website.  There are many avenues for diabetes advocacy, and the need for your voice is critical.

But what I did know is that every voice matters.  And every voice has always mattered.  This community is huge and continues to grow because it needs to, and because there isn’t someone who tells the story of all of us.  We tell our own stories, and the power is found in the collective itself.  One diabetes blog or website or newsletter doesn’t define this community (there is no “blog of Sauron”… wait a second …), so share your story – please!  Raise your voice.  And maybe the difference we make can be felt in more that just our own lives.

 

What’s Your Itch?

My “diabetes advocacy itch” has always been emotional health.  I’m not a doctor and I don’t know everything about type 1 diabetes, but I do know that I pay more attention to my diabetes when my head is in a healthy space, and being tuned in to diabetes improves outcomes, for me.  Feeling stressed, overwhelmed, upset … any kind of intense emotion like that seeds itself in my management attempts and upsets the apple cart.  (Or, to be more accurate, the islet cart, which is already a precarious one.)

I can have the most up-to-date, tech-savvy glucose meter on my bedside table, but I still need to motivate myself to load the test strip, apply the blood drop, and make decisions on the result.  I can have access to the best medical team in the country, but I still need to follow through on the appointments that are scheduled.  All the diabetes management tools in the world are rendered useless if I don’t use them.

Which is why the psychosocial side of diabetes interests me so much, because I feel that mindset can be as important as access.

(I realize that it is a privilege to have access in the first place – see how it comes back to mindset?  During the Spare a Rose campaign, I was repeatedly reminded to appreciate the insulin sitting in my butter compartment, which made me want to move the Life for a Child mission forward even more.  :: scratch, scratch ::)

Since the start of my blog back in 2005, I’ve seen people in the DOC space tackle a host of issues, because it was their “itch.”  Some people make their focus the FDA, or research, or fundraising for different organizations.  Some people want to move the needle on access to care, or exercise, or peer-to-peer support. Some people want to connect with PWD in their town, or have a network to discuss emotional issues with.  Others want to tackle public perception, or offline outreach, or influencing policy.  Just like the variables of diabetes, the advocacy and connection possibilities are endless.

Lots of different “itches.”

Every single aim is important.  Every voice is important.  Every person touched by diabetes is important.

So I want to know what your “itch” is.  What fuels you?  What diabetes issues are important to you?  We’re a huge community with the ability to do a lot of good, and it starts with knowing what you want to see “scratched.”  Maybe by sharing, we can find kindred spirits and get scratching.

Make a Difference For One.

An ode to the community I respect so much, and one that doesn’t simply exist “online.”  Diabetes advocacy takes shape in the smallest actions – you don’t have to be a “blogger” in order to make a difference. 

Make a Difference for One.

We’re united by beta cells on a long break.
We’re united by know just how much it takes
To pinch hit for pancs that gave up on producing
The hormone we use for blood sugar reducing.

It’s bigger than blogging. It’s bigger than Twitter.
It’s bigger than sharing photos of no-hitters.
It’s more than just Facebook; it’s more than the Tumblr.
It’s more than the lab work or A1C number.

It’s a group of compatriots, joined at the point
Where their betas up and vacated the joint.
But the group isn’t limited to those with the D.
It’s for those who are touched even casually.

If you blog – you’re in. If you Tweet, you’re in, too.
If you wish you did these but no time, it’s still cool.
Social media isn’t what makes you a part;
It’s those hiccuping betas, and an increase of heart.

Every way that you raise up your voice is what counts
Awareness is spread in big and small amounts.
No reach is too small and no efforts too rife.
Make a difference for one and you’ve just changed a life.

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