Wednesday, July 23, 2014

That One Time, On the Golf Course

Several years ago, a friend and I were playing golf one day. It was just the two of us and it wasn't particularly busy that morning, so we thought maybe we'd be sneak on without being paired up with another two-some.

Not the case.

We ended up with another two guys who weren't anything to write home about as far as golfing skill, and they seemed a little self-absorbed and unwilling to engage in just casual chat. So, we went about our golf game and maintained pleasant attitudes toward our fellow golfers.

Per my usual golfing routine I was wearing khacki pants with a tucked in polo shirt. And so, my insulin pump was clipped on to my belt as it usually is. This was a number of years ago, and at the time I wasn't wearing a CGM so my pump was the only diabetes device I had on me.

That's when it happened out of nowhere, on one of the later holes.

As I stood behind the tee watching my friend make his drive, one of the random-golfers was off studying his clubs on the golf cart while the other stood next to me quietly.

Once my friend finished at the tee, the guy next to me opened his mouth and asked a question that's since been burned into my mind.

Yes, that's what he asked. Just glanced up and probably saw it clipped to my waist, and asked... his tone, from what I remember, was casual, innocent, just genuinely curious.

And how did I respond?

"Yes, it is."

And that was it. Flat response, short and to the point without more than a quick glance in his direction before I turned my eyes back to the tee and walked up to take my drive. Maybe an a look that said, "leave it alone, dude, that's not what I want to be talking about today, or with you."

No clue why he was asking -- was he living with diabetes? Or had a family member, friend, or co-worker with diabetes? Did he have an insulin pump, or was he curious about getting one? Or maybe he just wanted to know more...

Whatever, the reason, I glossed over it. I had no interest in talking diabetes, and was simply out there on the course that day to play golf -- not to talk about diabetes. And so, I basically acted like an asshat to this guy asking about my pump.

I regret that now.

That moment was a big #FAIL on my part, as I see it now.

Actually, this isn't the first time I've thought about that and regretted my attitude. A few years ago, this came up during D-Blog Week when I mentioned it in this post.

But recently, Kerri wrote a post over at Sixuntilme that brought this back to mind. She wrote about "Unexpected Advocacy," how she was in that same kind of mindset when taking her daughter to the swimming pool and getting a question from someone there. Though unexpected, she ended up advocating.

That's the same point playing out now with Miss Idaho, a fellow type 1 named Sierra Sandison who decided to wear her t:slim insulin pump during the competition and (ultimately) her Miss Idaho crowning. Now, she's on the road to being the next Miss America. And through all of that, the social media campaign #ShowMeYourPump is getting mass attention and inspiring so many. Raising awareness about insulin pumps and diabetes in general, aside from giving little girls and probably many others more confidence in how they wear their own diabetes devices.

And then there's another example... a local Indy D-peep who just joined our local D-Community thanks to a friend who was at the bar and happened to be wearing his OmniPod on the arm that night. That Pod sighting made the woman's husband push her to go talk to my friend about how he liked that patch-pump, and from there he told her about the local meetups and group and encouraged her to join up. She has, and is getting a pretty great welcome from those in our local community.

It's all pretty awesome and makes me smile. But still, it makes me think back and regret even more my past Golf Course attitude once again. I really wish I could go back in time to talk more with this Golf Mate -- to at least find out the context of the question and who was asking.

We're not always in the mood to talk D, obviously. And we shouldn't have to be. Yes, sometimes we do want to #ShowMeYourPump. But sometimes we don't and that's OK. There's probably no right or wrong answer or approach, it's totally up to the individual person.

For me, I will take this train of thought with me onto all the future golf courses I play, along with coffee shops and restaurants where you never know who might be looking for a little advocacy or connection to make a difference -- even if they or you don't realize it at the time.

Tuesday, July 22, 2014

Diabetes Blogging Chicken and Community

Today is #dblogcheck day... you know, the one where you leave a comment on all the diabetes blog posts you're reading. Thanks to Christopher Snider for getting the ball moving on this check-in effort, btw.

**(Oh, and hat-tip to Kerri for clearing up on Twitter recently that this wasn't #dblogcheckin, since that sounds too much like #dblogchicken... with a chicken in the crockpot last evening, I had to jump on that.

Yes, the D-blogging chicken did get to pose for a #bgnow Tweet. But sadly, the chicken is no longer online post-dinner. I must say, he did go well with some white wine and rice at dinner last night. So, props to you, DOC Chicken.)**

OK, silliness aside.

Honestly, I wasn't going to post anything today. There's a lot of diabetes news happening and I'm caught up in that, so really I was just going to read a small handful of D-blogs, comment on those, and go about the day's business.

And coffee... because, well... of course. How can there not be coffee?!

Anyhow, reading a post by Stephen a bit earlier changed my mind. He wrote about the power of comments and why he and others write blog posts at all. And then he delved into a bit on why he likes to comment.

I can't say it as well as he has, so I'll let you read his post to see for yourself... but the point: I'm on the same page as Stephen on why I comment. It's therapeutic, and it often helps me figure out what my thoughts are on any given topic. The same goes for writing. It's a way to process what's rambling around in my head, and that allows me to put it down on paper (or virtually) and figure out what I actually think.

Looking back through the years, I've loved all the comments and have truly been enriched by all of them. By everyone in this community. The people in this D-Community are awesome... just look at the latest happenings, with all the #ShowMeYourPump activity going on. It's great.

Oh, and here's me the other day showing off my pump, btw:

Looking back, I got curious about those initial D-blogging days and those first comments. I took a look at my first "diabetes" blog post in March 2007, when this wasn't the D-Corner Booth but only the Corner Booth. That post was about complications, for the most part. And there were only a small number of comments, but these were even more special (even now looking back) because they were my first. Of course, my mom commented. Because she's my mom. And she's a fellow Type 1 who's been at this much longer than I have, so there's that added bonus.

Then there was George! Yes, it turns out the Ninjabetic was my first comment aside from my mom, and what's even more awesome is that a couple years after that debut comment, George left another one that actually let me know about the DOC on Twitter. And that got me onto that social media channel, for the first time....

As they say, the rest is pretty much history!

There are so many diabetes blogs out there and so many great comments you can read through on all of them -- that's the best part of how this Diabetes Online Community (DOC) has grown. It comes down to the simple mantra: You Are Not Alone. I Am Not Alone.

Together, we're telling our diabetes stories. We're connecting with others, on whatever the D-topic may be. Meetups in real life are happening, and it's just about finding people who "get it" and make you feel better when it comes to diabetes. Whether it be something serious... or as light-hearted and humorous as taking pics of your Dexcom next to a crockpot chicken, all in the name of D-Community fun.

Thanks to everyone for reading, writing, commenting -- now, in the past and down the road.

You all rock.

Friday, July 18, 2014

Dinner, Drinks and Discussion (& Upwards 125 Years of Diabetes)

I've been struggling with diabetes burnout lately, feeling as though I have to talk and think diabetes all day long. Thanks to that, it's been tough to keep my interest in wanting to do what I should when it comes to my own diabetes, or even interacting more personally within the Diabetes Online Community (DOC) because again -- it's all about diabetes taking away from the rest of my time.

But a local D-Meetup recently gave me a refreshing boost, as I was able to sit and chat with friends about so many things -- and although we came together due to diabetes, our meetup wasn't necessarily about diabetes and it didn't have to come up. The D aspects weren't forced, they were natural and helped me once again actually feel that I'm not alone.

We met for a Thursday night event at Granite City Brewing in downtown Indianapolis. Six of us came out, from longtime Type 1s who are at our 40, 30 and 20 year marks, to those within just the past several years. I unfortunately forgot to ask just how many years we all had under our D-belts, but I'm guessing it somewhere upwards of 125 years between the six of us.

From left to front: Michael, Tricia, Aaron, Me, Daniel, Alex.

Per the usual, we shared some good food and great beer, while chatting about so many different things that weren't necessarily D-related: jobs, how the states got their names, beer and vacation spots, diabetes tech and local bicycling and how our diabetes does or doesn't fit in. Even DSMA Live came up, as did a conversation about putting infusion sets on our legs or "side butt" (as Jacquie defined it for us).

I had a blast, just being a part of that conversation with these good friends for a few hours.

Toward the end, we talked more seriously about what we want this Adult D-Community to be -- especially now that it's a number of years old.

You see, the Indy Adult D-Community has now been meeting up since August 2010. Two fellow adult type 1s here in the area, Pat Kinder and Aaron Walton, were the first to get this idea off the ground after the JDRF Indiana chapter started embracing "adult inclusion." Remember that JDRF rebrand? Yep, this was part of that, and it was the national org's way of responding to many of our gripes through the years that they didn't seem to offer much for those of us grown-ups. They gave a directive and many chapters began responding, before the official rebranding campaign kicked off.

In the beginning, this local meetup group was a JDRF thing. But after a while when life got busier for all of us and the local JDRF chapter seemed to lose interest, I agreed to take the reins to make sure we could still have this group come together. It's the most informal of meetups -- just at a restaurant or bar after work, a Panera or Starbucks on a weekend morning for brunch, Saturday night bowling, or a World Diabetes Day dinner and advocacy every once in a while. We have had up to a couple dozen people, to just a few of us.

Of course, there's no obligation to be at one of these meetups, unless you want to be. Work, family and life priorities change often and vary for everyone (just like diabetes does), and so my aim is to just let fellow D-peeps know that this community is around, if and when it's needed.

There's no organizational ties, no fundraising pitches -- unless someone chooses to talk about that, and in the past we've laughed and complained and also talked up various orgs and initiatives. Because it's about us, not the orgs.

Since every diabetes org seems to do it's own thing and not play together much, I've taken the liberty of culling all of their calendars to create an Indy D-Calendar that includes activities and events that may be of interest to our local D-Community. From meetups, fundraisers, galas and other things -- along with some notes about DSMA and any upcoming DOC initiatives like Spare A Rose, Diabetes Art Day, and World Diabetes Day. That gets posted and emailed to the groups, along with the local pump reps and some educators and docs who are hip to connecting us.

That's been well-received, from what I have heard.

We have an email list (that only I and one other person maintain) of about 72 people with diabetes (98% type 1s), and a private Facebook group with 55 PWDs. And while I've certainly not had the honor of meeting everyone in person, I've managed to hear from a good number through the years to just know that they appreciate knowing this group exists.

So, that is why I turned to this community recently. Is this a "support group"? Hell, no. I hate that term and despite the idea of it. Because it's not about griping about diabetes, but rather meeting up to hang with friends and -- if diabetes comes up (which it probably will) -- then that's OK. When it does, it's a natural part of our lives and not something we're "forced" to talk about because it's a "support group" setting.

 It's all a work in progress, like everything. But one thing I've enjoyed the most is just getting together to talk as friends, whether D comes up or it doesn't. That's what I hope we can all continue.

So, what's next?

 Is there a need to make these meetups a more regular, scheduled occurrence at a set time? Do we want them to be "events" or just casual get-togethers? Is there a day or time that works better, or should we keep mixing it up to get the after-work crowd and then also the weekend brunch or bowling event audience?

I've strongly believed since the start, as I do now, that there shouldn't be any organizational or company ties -- because that defeats the purpose. We agreed that our next meetup will be in mid-August (likely the 23rd) on the southside, for a Saturday brunch time.
I'm also hoping we can work more closely with the Indy area doctors and educators, letting them know that we have this group and it's a great way to connect diabetics. It's about all of us, working together to connect each other.

Personally, I'm grateful to have a community like this locally. Because fundamentally, it helps me see that I'm not alone and no matter what we do in our daily lives, D doesn't have to be a formal or forced aspect of how we live. Sometimes I forget that, thinking D all day long professionally and then going through the routine every other minute of the day and night. No, these meetups help remind me that diabetes doesn't have to dominate, it just is a part of the natural flow of things in our lives.

Friday, June 20, 2014

A Random Conversation In My Head

"How many times a day do you check your blood sugar?"

Well, I'm supposed to do it X amount of times each day. But right now, I don't care. And so I am doing it maybe once or twice, if I'm lucky.

"Did you check today?"
Yes, I did. Twice. And no, I'm not wearing my CGM right now. I just don't have the energy to pay attention to that at the moment.

"You should check more and do better?"

You shouldn't be an asshole. Leave me alone.

"It sounds like you're a little tired of diabetes..."

Maybe I am. Especially after just spending a week traveling and thinking about diabetes non-stop, and being surrounded by it. That has gotten to me, and it makes me stop wanting to do what I need to. I need a mental break. I've been depressed before, an that's not what this is. Even in the past, my depression wasn't specifically caused by diabetes -- it was just regular life, but I was probably more likely to go through that because of my diabetes. It's a wonderful combination effect.

"So, what do you do when you get burned out?"

Take a step back from diabetes, like disconnecting my pump or CGM so I'm not relying on that all the time and having to think about it constantly.

"Don't you like your pump and CGM?"

Of course I do. Most of the time. They're safety nets and I rely on them a lot. But sometimes, it's too much data and I have to disconnect to give myself peace of mind. Because it's creating more work for myself than I need or want.

"But what all those people who want one, but just can't access them?"

You know, there's always 8 sides to every story. This isn't about what's going on with every single person under the sun. It's about me, and what you asked about my own health and diabetes train of thought. This isn't about anyone else.

"Does talking about diabetes with others help when you're going through burn out?"

Sometimes. Knowing that I'm not alone is big, and it helps me realize that I can do something. All with a little help from my friends, they say. That's not always the case, though...

"Why not?"

There are times I'd rather not talk diabetes and be around those people. That's a choice depending on how I feel. The more I'm around those people, the more focused on diabetes I become and it can get overwhelming. Meeting with fellow people with diabetes can be great, but it's not always a magical experience for me. Sometimes, I'd rather talk to a random person at a bar about politics, genealogy, the JFK assassination, or energy policy. Just because it's not reminding me about diabetes.

"Isn't your job all about diabetes? You 'cover' D on top of living with it... how do you get passed the overwhelming aspect?"

Having diabetes on my mind all the time non-stop, impacts my personal side of living with it. I try to draw a line, but it's tough. It's not the same as when I used to work for a general newspaper, and there was this clear line between my personal and professional life. It's all D, all the time. And sometimes, the last thing I want to do is bring my personal side into this. I want to just cover diabetes like a beat, from a distance. Yes, I do let diabetes define my world, on my own terms, and that's a personal choice. But sometimes, I need to turn off that switch and not think about it.

"Does it matter whether you say 'diabetic' or 'person with diabetes' in terms of defining?"

To me, no. I personally say diabetic. because I don't give a shit about the word. It's a word. It doesn't define me, and I find it ridiculous to think that it would define anyone. But some do, and so if I write professionally, I use PWD. Because that's, you know, politically correct. I make diabetes a part of my life and that's a personal choice. Each person should be able to decide that for themselves.

"Why are you writing this?"
No clue. I sometimes talk to myself, and write blogs based on conversations in my head.

"So, who am I supposed to be that you're 'talking' to?"
I dunno - my pancreas, the dog, an unused test strip that's staring at me on the floor... take your pick. It really doesn't matter, does it?

Monday, June 2, 2014

Balancing Diabetes Definitions, Connections, and.... (So On)

This past weekend gave me a chance to attend a local diabetes conference put on by the JDRF Indiana chapter.

There's been a national JDRF dictate that these conferences all across the country be referred to as TypeOne Nation, so that's what this one was. It wasn't the first of its kind here, but since it's relatively small and new, the chapter's followed that directive. An estimated 200 people attended this year, I'm told.

Had a great time, because it's just the right size to be intimate but not overwhelming. And what I liked was that it didn't force you -- as some larger conferences by JDRF and others do -- to miss some great sessions because there's too many crammed into the exact same time slot and you just can't be in multiple places at once, or even look back to view them on video or online at a later time.

I was live-tweeting a bit from my personal @MHoskins2179 account, using the @JDRFIndiana account and #TypeOneNation hashtag in most of my tweets.

It was great to have Dr. Fran Kaufman (a California endo and chief medical officer at Medtronic Diabetes) there as the keynote speaker and also a presenter on D-tech and research. Hearing her talk about all that she's done in her now-5 years with MedT, along with her global work in Haiti and beyond, was inspiring as always. It was also great to see her on the D-tech and research discussion, with a fellow Type 1 PWD Pat Fueger here in Indy who's a diabetes research at Indiana University. Pat's a great guy and we're on the Diabetes Youth Foundation of Indiana (DYFI) board together, but this was the first time I had a chance to hear him present on the interesting world of D-research he's involved with.

What stood out to me the most, as always, was having the chance to meet other people in the D-Community who live here in Indiana and surrounding areas. There was a handful of Adult Type 1 D-peeps there, including a firefighter who has type 1 and another who works in nursing. It was great to connect with a few new friends that I hadn't met or connected with in person before! And one aspect of the conference that I really enjoyed was an ending panel, where a trio of local Adult Type 1s shared their stories and talked about life with diabetes. Leading that panel was also a veteran PWD Dan Pollom, who's been living with type 1 for 50+ years and was a practicing endo here in the Indy area until he left for the corporate side last year at Lilly Diabetes.

I was also very pleased to see JDRF Indiana include a session on D-Burnout, where depression and the whole psychosocial aspect of diabetes was discussed. The session was pretty basic, but it was great to see the awesome Dr. Bill Polonsky mentioned along with some encouragement for people to reach out to the Diabetes Online Community. Although, on that point, the speaker -- Dr. Mary DeGroot here in Indy -- did urge us to connect with only those DOC resources that are "affiliated with a professional" to some extent; I kind of cringed at that point. I hope Dr. DeGroot knows that we're not turning to the DOC for medical advice or specific answers to treatment issues; many of us turn to the online world to find our peers, those people who "get it" and can help on the emotional aspects and help us not feel so alone in living with diabetes. That's an important distinction, one that the medical community's getting better at recognizing but is still not fully equipped to understand. Still, despite that, I was glad to hear her mention the DOC and recognize the importance of turning to those peer support places online to the extent she did.

Reflecting on the daylong conference, the personal connections were really the best part for me --meeting for the first time in person the great Rick Phillips who lives here in Indiana and is one the welcoming committee for TuDiabetes.

There were a number of other adult PWDs there, as I could tell from some random sightings of insulin pumps and D-device beeps... but there just wasn't enough time to connect with everyone!

Of course, all of that D-Connection brought to mind a side discussion that's been on my mind lately...

How much does diabetes really define me, and is it by my own choosing? 


One of the Adult T1 panels was a guy in Central Indiana who was diagnosed as a kid 28 years ago. He was very adamant that diabetes isn't a defining part of his life, and that really it's something you just deal with and move on; not something that needs to be "waved about" if you don't want to. It really made me think of how I was before finding the Diabetes Online Community back in 2005-2006, and especially before I really dived back into this world in later 2009.

Those days were when I wasn't "advocating" or writing about diabetes, and my own diabetes wasn't something I actively wore on my sleeve and shared with the world. Of course, I can't talk highly enough about the great DOC and how much it's been a positive force in my life these past several years. But there is a part of the pre-DOC Days that I do miss....  when it wasn't on my mind all the time, personally and professionally, and it almost seemed to be another aspect of my life like putting contact lenses in my eyes each morning.

This D-peep told me he doesn't see the need to connect with many local PWDs, and as he's happily using injections doesn't see the need to use an insulin pump or have a constant blood sugar number in sight through a CGM. I told him what I shared during the D-Burnout session, about sometimes disconnecting my CGM and even my insulin pump to just go back to the basics and not have to focus so constantly on my D-data. That's almost a "mini vacation" from my ususal routine, and it can be quite freeing.

He nodded, totally understanding and agreeing.

There's a lot to be said about all the great diabetes tools we have access to in this day and age, and especially for the DOC support that is there if and when we need it. But sometimes, it can be too much and make us focus more on this condition than we might actually need to.

As I was finishing up this post, I saw that Kerri had an interesting post over at sixuntilme that really seemed to be on the same point -- Define or Explain?

It's an interesting question, and it's one that I do not think has a clear answer all the time. Like everything else in diabetes, it varies per person and where you are in life.

Sometimes, I decide to let diabetes define me and I choose to wear that hat.

Other times, diabetes is an asshole and interferes with my life and tends to define me in those moments against my own will.

But more often than not, it doesn't define me. And even in those times when diabetes may explain me, it's better left unexplained because diabetes doesn't have to be a part of the conversation or focus. Sometimes, I just don't want to connect with D-peeps. Or attend diabetes conferences. Because in those times, I am struggling just to manage my own personal world of diabetes and all the emotional baggage that comes with it.

That's the balance I find myself trying to strike now, especially as we head into this busy diabetes conference season where D is on the mind.

With the worlds of covering diabetes issues, doing my own D-management and connecting with PWDs, that balance becomes even more critical to avoid burnout and whatever else lies beyond that point.