Tag Archives: meetups

Taking control of your diabetes message.

Hi! I hope everyone had a wonderful December 25th, however you celebrate it, or even if you don’t. For the record, my Christmas was very nice, with a quiet gift opening in the morning, followed by a completely bolus-worthy breakfast (I only get bacon a few times every year, and Christmas is one of those times). In the afternoon, we all went to my nephew’s home and did some more gift exchanging, hung out with him, his wife, and my great niece (who is also a great niece), and enjoyed an early dinner. All in all, it was a super day that left me feeling very blessed. Which, if you know the cynical side of me, sounds absolutely strange. I guess there still is some magic left in Christmas.

I’m very fortunate in that I don’t have to deal with lots of friends and relatives at this time of year who begin with the “Can you eat that?”, work their way through the “If you eat better and exercise more, maybe you can get off the insulin”, and finish with the “My co-worker has a sister who lost her toes a couple of years back”. I think there are a few reasons why.

First, my friends and family make an effort to actually know something more than the basic jargon that gets regurgitated by talking heads on TV. They don’t know about insulin-to-carb ratios or how fat in your diet holds back the effectiveness of the insulin you’ve got on board. But they know that exercise can drive your BGs down in a hurry. They know that insulin actually brings your glucose down, not up. They understand that too much insulin is bad, and not enough insulin is bad, and getting to that Goldilocks state (just right!) means that there’s some math involved, and the perfect BG is a moving target, so it’s not a walk in the park.

Second… to put it into two words… They Listen. They may or may not ask how I’m doing, but if the subject comes up and I talk about diabetes, they honestly listen to what I have to say about it. And they retain some of that information, because they often ask me about it the next time they see or hear from me. I don’t know when this started happening, but I’m glad it’s happened. I’m not saying that everyone should listen intently to everything I say on the subject, but it’s nice to know that I get at least as much attention as the talking head on TV.

Finally, and I can’t stress this enough: I take control of my diabetes message. You wouldn’t think of me that way if you’ve ever met me. If we meet and I don’t know you, I’ll try to remain unassuming and in the background a bit until you’re comfortable with me. But if we’re talking about diabetes, and especially if you’re challenging me on my diabetes, I guarantee you I’ll be doing everything I can to direct the conversation in a way that’s informative, and mostly positive. I’m not going to let someone with antiquated notions of this chronic condition or with incorrect information control the conversation. I’m going to try to explain what Diabetes 2014 looks like (it’s almost 2014—right?), and I’m going to try to put it into terms that the non-diabetic can understand, and take with them to the next conversation about diabetes that comes up in their lives. I am doing this in a deliberate, conscious way.

Why do I do this? Why do I make this effort? Is it because I’m a crazy, rabid diabetes advocate? Well, I try to be a diabetes advocate whenever I can (reference the Diabetes Advocates button on your left—I’m a member), but that’s not quite the idea here. The thing is, I’ve had those moments with friends or at work, where people just say things that don’t make any diabetes sense, and I’ve let it roll off my back without saying a word. I don’t do that anymore because keeping it to myself doesn’t feel nearly as good as opening up a window and letting in the fresh air of truth. In some cases, people may just let my words roll off their back and forget about everything I say. But at least I’ve let them know that my diabetes is my diabetes, and it’s different from what they’ve heard in the past, and I’m not Aunt Clara and yes, I’d love a small slice of that pumpkin pie, thank you.

So my advice, if you’re asking:

– You are living and surviving with diabetes, or your son/daughter/spouse/etc. is. You never have to apologize or be defensive, or be silent about that.

– Stay informed. Talking well about your diabetes means knowing as much about your diabetes as you can. It also makes it easier to answer questions when you get them (I love questions! It means the other person in the conversation is engaged).

– Never miss an opportunity to set the record straight. The more we let truth in, the less room there is for myth.

– If possible, try to put things in terms that someone not living with diabetes can understand. Work on your message like it’s a sound bite, or an elevator speech. You know, like you’re riding an elevator with someone important, and you only have 20 seconds to deliver your message before they arrive at their floor.

– Remember how networks are created: In this case, one person at a time. Remember that your message to one person may be rebroadcast to many others. Do you want them to rebroadcast your message, or their version of diabetes? How would each of those outcomes make you feel?

Good luck with crafting and delivering your very important, amazing message to the world.

It just feels good. And it works.

I’ve noticed this phenomenon each of the last two holiday seasons. This is a time of year when I’m unable to work out as much as I’d like and therefore, my insulin doesn’t seem to work out as well in my system. In short, my numbers are higher than the rest of the year.

But…Here’s what is so amazing about this time of year for me:

Last Sunday, we had our annual holiday open house. After a snowy afternoon filled with sweet and salty carbs and lots of conversation among friends and neighbors, my 6:00 p.m. BG check showed 113 mg/dL.

Monday, I had a normal day at work, eating something close to my normal diet, and couldn’t muster anything lower than a 156.

On Tuesday, more of the same. Okay dietary choices, worked through the day, came home, and my pre-dinner check showed 165 mg/dL. But: After dinner, our next door neighbor came over and we spent a few hours talking and laughing and sharing stories. Can you guess? My BG check after came in at 75 mg/dL.

Hey, I can’t explain it. I’ve never been known as a social person, though that’s changed a lot over the last couple of years. But I know that people-to-people contact has definitely had a positive impact on my glucose this holiday season. So I’m going to seek it out as much as I can.

I’m curious… Do in person get-togethers help you with your BG management?

About that #DSMA Philadelphia meetup.

DSMA Philly

Since I’m back from vacation, and I finally have wi-fi access for the first time in almost a week, I should probably talk about the DSMA Live and DSMA Twitter chat that happened last Wednesday night in Philadelphia. I have never been in a room with even half as many adults with diabetes as I was that night. It was a pretty incredible experience.

At some point, I guess I’ll probably get used to being in rooms with other adults with diabetes. I haven’t gotten to that point yet. It’s weird because I’m almost never in a room with other PWDs. When I am, it’s wonderful because it’s empowering and uplifting and informative all at the same time. So it’s weird and wonderful.

That kind of environment is a by-product of what Cherise Shockley and Scott Johnson bring to the table with their efforts to bring people together and share how important it is to engage in discussions with others like ourselves. It’s the kind of quality that’s not easily defined, but is special and necessary at events like this. Sort of a “you know it when you see it” kind of thing.

I got a chance to meet a few people I hadn’t met before, and a few that I had met before. It was very nice seeing Molly McElwee Malloy, research coordinator at University of Virginia’s Center for Diabetes Technology. She’s also a Certified Diabetes Educator and an RN. She’s a Type 1 too, so it’s interesting to talk to someone who knows so much and lives with diabetes like I do. She made some great points during the podcast. I loved hearing Allison Nimlos talk about the Paleo diet, and I got a couple of great ideas for starter books. I’m not thinking of going totally Paleo, but I’d like to try it out, at least, because it really does appeal to me. And most diets don’t. Kelly Kunik was very kind and gracious, and we talked briefly about her talented niece, who is doing great. I didn’t get a chance to tell her that my nephew has done fantastic since living with us for a couple of years, and our niece is growing every day since moving in with us two years ago. I got to meet Colleen Gray, who is very nice and seems to have a great sense of humor. There was also Maria Qadri and Penny too, both of whom are great to follow on Twitter because they’re very witty and smart. And I got to meet Brea, a Best of the ‘Betes Blogs winner from last month who has a great story to tell, and tells it greatly.

You know, I didn’t think I had met too many people Wednesday until I read what I just wrote. But it appears that I did. It’s always great to put a face with a name, or vice versa. Mostly, it was great hearing the diversity of voices in the room.

How was it being in the room while DSMA Live and the Twitter chat were occurring at the same time? Honestly, it was a little hard to concentrate on one without losing track of the other. But after a while, I was able to handle it, I think. And honestly, I wouldn’t have missed it for the world. I vote for Cherise and Scott to do this every week in front of hundreds or thousands. How cool would that be?

I’m so grateful to Diabetes Community Advocacy Foundation and Roche for hosting this special happening close enough that I could attend. This also brought home to me the idea that I really need to find a way to do a live meetup of my own locally. Don’t know if I can pull it off yet, but this event definitely put it at the forefront of my mind again. And I have to admit: Even though it will be just a virtual meetup, I’m looking forward to this Wednesday too.
P.S. If you missed the original podcast, you can listen to it now by going to blogtalkradio.com and searching for DSMA Live, or by clicking here:


Real Life Get-togethers. Not just for T1Ds anymore.

The Great Spousal Unit and I attended an open house for Type 1s at the local JDRF headquarters this week. It’s important for me to go to these things, in part because I’ve been feeling very anti-real-life meeting lately, if that makes any sense. There’s not a good reason for that. It’s just that mostly, at the gatherings I’ve been attending, I’m the oldest person in the room. Sometimes by a lot. And as you probably know, sometimes, if people can’t immediately identify with you, they don’t want to talk to you.

So I dragged the spouse to this get-together. She wasn’t feeling too good that day, but I figured if I could get her to come, I’d have at least one person to talk to all night.

You know what? We both had a great time. We didn’t get to talk to a lot of people, but the conversations we had were meaningful. I saw someone I recognized from mentor training a few months back. We spoke to a mom whose kid was diagnosed not too long ago.

That last conversation was particularly poignant for TGSU. She got to hear, maybe for the first time, someone talking about nighttime BG checks, packing diabetes supplies as well as books and pencils for school, and managing pump settings for an active summer instead of desk-bound school days.

On our way out, we passed by her child and a couple of other kids that were there, who were drawing designs on balloons (and using the name tags from the event to write “Free Balloon” on each one—wish I had gotten a photo of that) and handing them to people as they left.

On the way home, Maureen was feeling a lot better. And she admitted to a new understanding (and perhaps empathy?) for parents of CWD (Children With Diabetes) and their never-ending labor of love for their children. All I could think of was how great it is that that kid seems to be living the kind of life they’re meant to live, even with diabetes along for the ride.

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