Living with Diabetes

How DiabetesSisters is supporting women with diabetes

12/15/2018 by Scott Johnson

Thanks for tuning in to another episode of “Live, with Scott!” This week, I’m interviewing Karen Graffeo.

Karen has been a major contributor to the online diabetes community for a long time (#dBlog week, anyone?). In 2014 she started working with DiabetesSisters where she’s Program Manager. Landing the job at DiabetesSisters was a dream job for Karen. We talk about her role there and how she got in, about the work happening at DiabetesSisters and her history of work in the diabetes community, as well as some new things that DiabetesSisters will be releasing early next year. Also, don’t forget that regular listeners have a chance to win sweet mySugr swag for participating in the live chats! Be sure to listen to the start and end of our show for more details on that.

Summary

  • Do you celebrate your diaversary?
  • How Karen got involved in the diabetes online community
  • The PODS meetups through DiabetesSisters and Karen's role hosting the virtual one for those who don't have a local PODS group nearby
  • "Between the Lines", the new website feature soon to be launched on DiabetesSisters.

Video

Transcript

Scott Johnson: All right, welcome to another episode of Live with Scott. Thanks so much for tuning in. My name is Scott Johnson. I've been living with diabetes since I was five years old and the diabetes social media space is like ketchup on my grilled cheese. That means you are a big part of my wellbeing and I wouldn't be who I am without you, so I'm so thankful for you. Scott Johnson: As your host today, I'm excited to share a conversation with Karen from DiabetesSisters. Karen is one of my favorite people around and DiabetesSisters is an amazing organization. I can't wait for you to hear more about the many ways they are serving the diabetes community, but first, last week's winners. Congratulations to Kim Marcelli-Cunha and Denise Mize-Bruner Armstrong who just won some fun mySugr SWAG. We'll send you a message on Facebook after the show to coordinate details. Scott Johnson: Stick with us to learn how you can win some fun free mySugr SWAG too. Now while we get going, please share a quick hello in the comments and let me know where you're watching from. If we mention anything that resonates with you, please show us some love, I'd really appreciate that. And if you know anyone that might find this helpful, please share this with them. Today's episode is sponsored by the mySugr Bundle. Get unlimited strips, automatic supply refills, personalized support, and more. All for just $49 every month. Learn more at mysugr.com/facebooklive now.
Scott Johnson: I recently caught up with Karen from DiabetesSisters. Karen's been living with type one since 1979. In 2008, she found the diabetes online community and started her blog called Bitter Sweet. She became hooked on diabetes support and advocacy both online and off over the years. She's volunteered and consulted in the diabetes world. In the fall of 2017, she landed her dream job as program manager at DiabetesSisters and today she's going to tell us more about what that means, explain how you can get involved, and she'll fill us in on some exciting new things coming out of DiabetesSisters. Scott Johnson: Alright Karen, thank you so much for joining today. Karen Graffeo: Hi. Thanks for having me. Scott Johnson: Of course. Our pleasure. So let's start out with a quick little introduction to you and your diabetes story so far. Karen Graffeo: Okay. Well I was diagnosed with type one in sometime in December of 1979. We actually don't know the exact day, so today could very well be the diagnosis day. Let's pretend it is! Scott Johnson: It's a weird thing. So like last week Stacey and talked about this too. Do you? So, so let me, let me preface this by saying like I don't, don't really celebrate my diaversary, but I, I'm more so kind of mentally acknowledge it and it's like I acknowledge all the growth, all the kind of all the bullshit that we have to deal with all this stuff. What do you do around December? Karen Graffeo: I don't really have a celebration or a party, but I do kind of think about it and here's where I kind of bring it on a downer. But like I never thought I'd still be here. 1979, this past May, I turned 50 and I loved it. I was excited because I never thought I'd live past 30. Scott Johnson: That's what we were told! Karen Graffeo: I truly believed that. So while I don't really celebrate, I do kind of go, wow, look, I'm still here, I'm doing okay. Next year when it's going to be 40 years, maybe I will have a party. Scott Johnson: I think, um, I think when I hit the 50-year mark of, of diabetes, I'm going to throw a big party. Everyone's invited. So yeah, keep me posted on that. I would love that. Yeah. I want to come to your party too. So now you have been, you've been involved in the diabetes online / peer support community for a long time. Can you tell us a little bit about that and how that led you to what you're doing now at DiabetesSisters, Karen Graffeo: So it's been about 10 years and the way I found the online community is because um, my endo was strongly recommending I get an insulin pump, and I wanted no part of the pump, I was freaked out by it. So I kind of went to Google and found diabetes blogs, and at the time I had a knitting blog so I was kind of already a blogger and had no idea that there was a whole world of diabetes bloggers out there. So I started my own diabetes blog and got involved and it, like completely transformed me. Before I found the DOC (diabetes online community), I didn't want anyone to know I had diabetes. I wouldn't talk about diabetes. I hid it from even my closest friends and coworkers and stuff. Now I don't stop talking about diabetes. I work in diabetes. It really changed my life and my health, you know? I went on the pump. It was the right choice for me and it helped me get better management than I had ever had up to that point. Scott Johnson: At some point along the way you kind of bumped into DiabetesSisters and the great work that they're doing there and the great people at Diabetes Sisters tell us a little about that. Karen Graffeo: I had found them online because they were in the community too, and I was kind of following and always wanted to go to a Weekend for Women but never could quite make it there for one reason or another. And then one year at a Friends for Life I met Anna Norton who was the director and is now the CEO, and I remember she gave me her card and said we'll keep in touch. And we did. And um, in 2014 she told me that they wanted to do a virtual pod support group meeting. So, pods are our signature program, peer-led support group, all around the country, and they're led in person. But for places where there isn't a group or rural areas where you can't get together, um, she wanted to do an online one. So I agreed to lead that and I started that in 2014. I'm still leading it. Four years later, I joined the staff, I do most of the social media, the website stuff. I do the newsletters. It's so much fun. I love my job. I truly do love my job. Scott Johnson: And they're so lucky to have someone that lives and breathes diabetes. But um, as, as your personal journey with diabetes led you to DiabetesSisters and DiabetesSisters had such an impact on your life, it's such a natural fit that you are transforming your experience in and bringing that into many other people's lives. Karen Graffeo: Over the years I've pitched in anywhere I could in the diabetes space. I did some advocacy stuff, you know, on Capitol Hill and stuff like that. And, and I truly loved everything I've done, consulting, advocacy work, but about two years ago I kind of stopped and took stock and I realized that what's most dear to my heart is support. That's what got me to the DOC and that's where my passion lies. And um, that's why I'm so happy to be with DiabetesSisters. Support, especially peer support, is so big with our organization. So it was a really good fit. Scott Johnson: I agree. And peer support is such an important aspect, I think, of living well with diabetes. As I've mentioned often, it's crucial to my wellbeing with diabetes. So, um, so you mentioned, you mentioned pods. Can you tell us a little bit more about some of the programs that are that are happening through DiabetesSisters? Karen Graffeo: Sure. So our PODS, our peer-led support groups, they've been around since 2010 and uh, we're in something around 35 states or so. We're adding more all the time. And my one virtual one... Scott Johnson: Let's stop right there for a second. So if someone is interested in finding out if there is a local pods group near them, they would head to Diabetes Sisters, and there's a section there where they can look up information about that. Is that right? Karen Graffeo: Exactly. There's a tab at the top for PODS meetups and there you'll find a pods interest form where women can fill it out. Uh, it just asks us where you're from, If you're interested in attending a PODS meetup, if you are interested in considering leading a pod, and then you hit submit that comes to us and we get you whatever information you need. Scott Johnson: And with the virtual PODS group that you lead, it sounds like, and correct me if I'm wrong, if there's not one nearby that they can, of course, jump on board that? Karen Graffeo: Exactly. We'll send you the information about that. And it's a lot like what we're doing right here. We use our webcams and we meet. Um, if people don't have a webcam they can call in on the phone, but the webcams are fun because it's still like we're face to face. Scott Johnson: Yeah, I think it adds a whole 'nother level of kind of building that relationship, but I do also love that phone option. So there are, as I'm sure you know, that, you know, not everyone is super comfortable with showing their face, especially if they sort of are new to the experience and stuff like that. So it sounds really, really great and I have met so many people over the years that have grown and benefited so much from the pods program. So that's amazing. So, that's amazing, thank you. I just wanted to kind of dive into that and share a little bit more information for anyone watching that might want to learn how to get more involved. Karen Graffeo: Great. Thank you. Happy to talk about PODS meetups. Scott Johnson: Great. So I cut you off right in the middle as you were starting to talk about another program. Karen Graffeo: Yeah. Something that we've been working on over the past year or so, working on more, is our minority initiative program. So that's support for women with diabetes, uh, in underserved populations. So we've had in-person, um, programs in Miami, in Silver Springs, Maryland, in Old Bridge, New Jersey. Most of our Miami programs focused on the Hispanic population and are presented entirely in Spanish. So it's, it's really exciting because you're bringing culturally relevant information to women who might not have an easy time finding it. I believe in January we have an event coming up in Chicago, a minority initiative of events that will revolve around exercising with diabetes and one in February in Silver Springs, Maryland, again, focusing on medications. So it's very exciting. Scott Johnson: That's great. Now, when we started chatting about bringing DiabetesSisters on the Facebook Live program, you also teased out that there might be something new coming to the website. Do you want to mention that a little bit? Karen Graffeo: Next year, we're launching a new web-based initiative called "Between the Lines." It's going to be a brand new website, not website, but a new web section on our site. We've seen it from the developers. It's looking really good. I'm working hard to get everything in place and it's basically stories from women at different points in their life with different life events and staying between the lines so to speak. Find out more about what that means in January. Scott Johnson: Well, I can't wait. I can't wait. That sounds so exciting for anyone that's watching. Where can people find more information about DiabetesSisters and the programs? Karen Graffeo: Our website is DiabetesSisters.org and we've got everything you need to know, you can find there. We're also on Twitter and on Facebook and on Instagram and actually on Instagram right now we're running kind of a fun event in stories that's called DiabetesSister's favorite things. All of the cool diabetes products that we, ourselves, like, um, if you want to gift them to others this holiday season or gift yourself. And many of them we've secured unique discount codes to save you some money or get you some extra features. And, today actually, our feature is mySugr. Check out our Instagram stories and see what you can snag. Scott Johnson: Yeah. We're super excited to support Diabetes Sisters with the program and, and um, we are big supporters of, of everything that you guys are doing and I'm personally a big fan of all the work that DiabetesSisters, so thank you Karen for sharing a bit of time with us and telling us all about it. Karen Graffeo: Thank you. We're grateful for all the support you've given us and we're so excited that you signed on for favorite things and you guys enough. Scott Johnson: Yep. And we'll put all the content links and everything on the screen to make it easier for people to find out more. Thanks again, Karen for coming on and I look forward to connecting up again with you real soon. Karen Graffeo: Thank you. Scott Johnson: Big thanks to Karen and DiabetesSisters for everything they're doing and as Karen mentioned, be sure to tune into their Instagram stories for their DiabetesSister's favorite things, holiday edition. And as always as a special thanks to all of you watching, I have two special mySugr tote bags with some goodies inside like a Pop Socket and a few stickers that I want to give away. To enter, leave a comment below and let me and Karen know if you enjoyed today's episode and before next week's show, which I'll be broadcasting live from our Vienna office, by the way, I will randomly select two lucky winners and announce them during the start of next week's broadcast. Scott Johnson: Once again, today's episode is sponsored by the mySugr bundle. Get unlimited strips, automatic supply refills, personalized support, and more all for just $49 every month. Learn more mysugr.com/facebooklive.
Be sure to tune in next week where again I'll be broadcasting from our awesome new Vienna office and I'm going to be catching up with the amazing Quinn Nystrom to chat about her conversation on diabetes with the Surgeon General of the United States, her work on insulin affordability. We're going to be talking about celebrity superstar Nick Jonas and her work around type one diabetes and eating disorders with the Center for Change. So much going on. Wow. Thank you so much for joining today. Please like this video. Share it with your friends. Have another amazing day and I'll see you next week.

Scott Johnson

Almost famous for his addiction to Diet Coke, Scott has lived well with diabetes for almost forty years and is currently the Patient Success Manager, USA for mySugr. He's an active pioneer in the diabetes social media space and along with his work at mySugr, he manages his award-winning blog, scottsdiabetes.com when time allows.