Philly Focus Group

I’m having breakfast this morning at the Philadelphia International Airport after spending yesterday evening with an incredible group of fellow PWD’s (Persons With Diabetes).

My four-dollar bagel and soda didn’t come with enough cream cheese, but I feel kind of stuck. The bagel itself is HUGE (60-80 grams of carbs?), but the cream cheese container is regular size. Enough for maybe half of the bagel. I don’t want to leave my seat & table to get more, and I really don’t want to carry all of my crap back up to the counter with me to get more. So I’ll eat my lightly topped bagel and be glad it didn’t cost more I guess.

The group last night was really something special. I don’t know if it is my appreciation for others living with type 1 diabetes, or if many of these people I meet are really something special. Probably a mix of both. I like to think that living with diabetes makes us all a little more special than average, and maybe there’s something to that too. Whatever way I look at it, it was a blast to hang out with these folks.

There were seven of us, most from around the Philadelphia area, and combined we had just over 180 years of type 1 diabetes experience between us.

Our discussion was guided in some ways, but there was a lot of open discussion too. We spent a lot of time building a “timeline” of our day with diabetes. From the moment we woke up, to the moment we went to sleep, we had to label and plot everything we did around our diabetes.

It’s actually a pretty involved exercise. One of the things that made it involved was having to “unpack” all of the things we package together in our minds. For example, when I say “eat”, what I usually mean is interact with my meter to test, count carbs, interact with my pump to bolus, then eat. It’s ugly when you break it all down like that. There is so much involved with simply eating. But in my diabetic mind, it’s all packaged together in the single word “eat.” It was surprising how many actions of my day were bundled together like that.

I’d love to get my hands on a picture of my timeline. If any of you that were facilitating the focus group last night read this, and you’re able to send a picture to me without compromising any of the things you can’t share, please do. I think it would make for a really great blog post!

An added bonus for the evening was getting to spend a few hours after the focus group visiting with the facilitators. I feel so encouraged and hopeful when I am so impressed by the folks working on things for us. They are usually not just competent, or smart, or able, but downright impressive.

There were a couple of people in the focus group that I’ve seen around the DOC, and it was so great to meet them in real life.

This is Penny from A Sweet Grace, mom to Grace who lives with type 1. Penny was such a treat. She works so hard for her daughter, as do most parents, but what struck me most was her dedication to balance Grace’s emotional well-being along with her physical health. That, and she was so grounded. Penny, it was really great to meet you in real life!

And this is Betty, who has lived with type 1 diabetes for over 50 years, and is one of my heroes. She talked about what she did to keep her A1C under 7.0 while on steroids (for some other issues). I’ve never personally had steroids for anything, but I hear nightmares from those trying to manage blood sugars while on them. Betty is a real gem, and I’m so glad to have had the chance to sit nearby and absorb some of her diabetes wisdom.

The others in the group were just as magical, but I didn’t talk with them about plastering their pictures all over the internet. So with respect to their privacy, I’ll not blog about them without their permission.

It was a great night, with not enough sleep, and an early flight back home, but I am so thankful for the opportunity to talk with everyone.

Disclosure: My travel and lodging are being reimbursed, and I, along with the other respondents, was paid a small sum for participating in the focus group.

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Scott K. Johnson

Patient voice, speaker, writer, advocate, and Senior Community Manager at Blue Circle Health. Living life with diabetes and telling my story. All opinions expressed are my own and do not necessarily represent my employer’s position. Read more…

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