DIABULIMIA HELPLINE: We have seen community support become SUCH a vital part to many in the diabetic community. This online movement, known as the DOC (The Diabetes Online Community) has taken on a huge important for many diabetics. (In fact you co-host DSMA Live on twitter through your handle @ScottKJohnson. What do you think is so important about the DOC and what they do?
SCOTT JOHNSON: The diabetes online community continues to be a huge part of how I cope with diabetes and how I manage the many psychological and emotional ups and downs. I get tips and tricks, I get multiple perspectives on life with diabetes, and most importantly, I get a sense of normalcy. In other words, I can see that the things I experience and struggle with are the same as so what so many others are experiencing and struggling with. Feeling normal is a powerful force for good in the daily walk with diabetes.
DIABULIMIA HELPLINE: On your blog, ScottsDiabetes, you’ve published a list of your A1C’s. For many diabetics this number carries a great deal of shame or embarrassment. Why did you decide to make your history public?
SCOTT JOHNSON: Great question. For one, it’s a matter of logistics. It’s an easy place for me to keep a record of my A1Cs. But making them public came from a desire to show that I don’t have it all figured out. I consider myself pretty knowledgeable about diabetes. I have over 36 years of experience. I have access to most of the tools and medication I want. I am motivated. I am engaged. I try hard. And my A1cs are far from ideal. Diabetes is hard. I hope by sharing this part of my story I can help people persevere.
DIABULIMIA HELPLINE: In your blog post “Dude! You Can Stop Eating Now” you talk about the pull of perfectionism and guilt over eating. Beautifully put, you say, “I think there is a very delicate balance here, fighting the urge to jump right into some obsessive perfectionist trap, and instead being gentle and forgiving with myself.” How do you deal with those two conflicting desires?
SCOTT JOHNSON: It’s a constant struggle, and there’s nothing like diabetes when it comes to exploiting vulnerabilities. I think my pendulum swing back and forth all the time. Too far on the perfectionism side, and I go crazy, yet too far on the gentle forgiving side and I’m not doing enough to take care of myself. My best strategy is being aware that it’s normal to swing back and forth but going too far either way isn’t healthy.
DIABULIMIA HELPLINE: In your blog post, “Invisible and Invincible” you talked about a feeling that, as you said, weighs “tired to your soul.” Can you expand on that feeling a little bit? What makes an invisible illness so different?
SCOTT JOHNSON: Great question, and it’s really difficult to explain, yet somehow, anyone who lives with something like diabetes understands it in an instant.
DIABULIMIA HELPLINE: You work as Communications Lead of mySugr, can you explain a little about how that app works?
SCOTT JOHNSON: Sure. Our motto at mySugr is “we make diabetes suck less.” We have a handful of apps and services, but our most popular is mySugr Logbook. As you might guess from the name, at its core, it’s a digital diabetes logbook (with a bit of an attitude). We’ve taken one of the most boring and ugly parts of diabetes (tracking data) and made it beautiful, fun to use, and immediately useful. As much information as possible (and desired) is collected automatically through connected devices and sensors on the smartphone, and the rest is manually entered. We use elements of gamification to help you stick with it, and reward you with points and little reactions from your “diabetes monster” (who you can name, by the way – my daughter helped me pick “Chewcarba” for mine). Additionally, we try to make the information useful and actionable right away, rather than being just a pile of numbers that doesn’t do anything for you until you visit your doctor or diabetes educator. One great example of this is using the location services. Imagine walking into a restaurant and being able to instantly see every meal, blood sugar, insulin dose you’ve ever done there, and how your blood sugar reacted over the next few hours. That sounds helpful, doesn’t it? We think so.
DIABULIMIA HELPLINE: Many diabetics know the diabetes app mySugr Logbook, what they may not know is that though it was developed in Austria you were instrumental in bringing it to the US. What made you so passionate about this particular project?
SCOTT JOHNSON: Absolutely. After gaining a good amount of traction and attention for mySugr Logbook in Europe, mySugr (the company) worked through the FDA approval process (many don’t realize that mySugr Logbook is a class 1 medical device and is registered with the FDA) and asked for some help spreading the word about their launch here in the US. My work in the social media space here along with an existing relationship with one of the early team members at mySugr made it a very natural project to collaborate on. I enjoyed working with everyone at mySugr so much during that project that I’ve been working with them full-time for a few years now.
DIABULIMIA HELPLINE: There are many diabetic apps on the market these days to help you log your blood sugar, what made this particular app stand out to us for our diabulimic clientele is its game-like feel. The cute monster and points you get for testing, regardless of the number, makes it ideal for diabetics getting back into the routine of blood sugar management. Any tips for our new users to the app?
SCOTT JOHNSON: The biggest key is to make it your own. You can name your diabetes monster if externalizing is a useful coping mechanism for you. You can also customize your logging screen to fit your individual wants and needs. If you don’t care about tracking pills, turn that field off. If tracking your mood with a tag is most important to you, move that field to the top of the screen so it’s easy to access. You are in full control of how it looks and what you track. It feels good to have some control over this stuff, doesn’t it?
DIABULIMIA HELPLINE: Absolutely! && on a personal note, I LOVED the ability to truly customize my diabetes monster to MY diabetes monster! You’re also on the Board of Directors for Diabetes Hands Foundation, who sponsors both TuDiabetes and DiabetesAdvocates. What is the number one piece of advice you would have for those looking to get into diabetes advocacy?
SCOTT JOHNSON: There is incredible power in each of our stories. And it’s therapeutic to tell your story! It doesn’t matter the form or channel (blog, twitter, youtube, whatever), just find something you enjoy and tell a little bit of your story. Even if it’s just talking to a friend. The exercise of processing your thoughts and feelings through language is important and the world is waiting to listen.
DIABULIMIA HELPLINE: Any last words for our readers about your many projects in the diabetes world?
SCOTT JOHNSON: Thank you for the great questions and for the wonderful opportunity to share! I really appreciate it!
Thank you SO much for talking to us Scott!! If you live in the San Diego area or plan on attending #AADE16, you are invited to join us for DSMA on August 11th. You do not have register for AADE to attend this event it is opened to the Diabetes Community and Diabetes Educators. I promise we will have an engaging and thought provoking conversation which will include PWDs, Caregivers and CDEs!
SCOTT JOHNSON: The diabetes online community continues to be a huge part of how I cope with diabetes and how I manage the many psychological and emotional ups and downs. I get tips and tricks, I get multiple perspectives on life with diabetes, and most importantly, I get a sense of normalcy. In other words, I can see that the things I experience and struggle with are the same as so what so many others are experiencing and struggling with. Feeling normal is a powerful force for good in the daily walk with diabetes.
DIABULIMIA HELPLINE: On your blog, ScottsDiabetes, you’ve published a list of your A1C’s. For many diabetics this number carries a great deal of shame or embarrassment. Why did you decide to make your history public?
SCOTT JOHNSON: Great question. For one, it’s a matter of logistics. It’s an easy place for me to keep a record of my A1Cs. But making them public came from a desire to show that I don’t have it all figured out. I consider myself pretty knowledgeable about diabetes. I have over 36 years of experience. I have access to most of the tools and medication I want. I am motivated. I am engaged. I try hard. And my A1cs are far from ideal. Diabetes is hard. I hope by sharing this part of my story I can help people persevere.
DIABULIMIA HELPLINE: In your blog post “Dude! You Can Stop Eating Now” you talk about the pull of perfectionism and guilt over eating. Beautifully put, you say, “I think there is a very delicate balance here, fighting the urge to jump right into some obsessive perfectionist trap, and instead being gentle and forgiving with myself.” How do you deal with those two conflicting desires?
SCOTT JOHNSON: It’s a constant struggle, and there’s nothing like diabetes when it comes to exploiting vulnerabilities. I think my pendulum swing back and forth all the time. Too far on the perfectionism side, and I go crazy, yet too far on the gentle forgiving side and I’m not doing enough to take care of myself. My best strategy is being aware that it’s normal to swing back and forth but going too far either way isn’t healthy.
DIABULIMIA HELPLINE: In your blog post, “Invisible and Invincible” you talked about a feeling that, as you said, weighs “tired to your soul.” Can you expand on that feeling a little bit? What makes an invisible illness so different?
SCOTT JOHNSON: Great question, and it’s really difficult to explain, yet somehow, anyone who lives with something like diabetes understands it in an instant.
DIABULIMIA HELPLINE: You work as Communications Lead of mySugr, can you explain a little about how that app works?
SCOTT JOHNSON: Sure. Our motto at mySugr is “we make diabetes suck less.” We have a handful of apps and services, but our most popular is mySugr Logbook. As you might guess from the name, at its core, it’s a digital diabetes logbook (with a bit of an attitude). We’ve taken one of the most boring and ugly parts of diabetes (tracking data) and made it beautiful, fun to use, and immediately useful. As much information as possible (and desired) is collected automatically through connected devices and sensors on the smartphone, and the rest is manually entered. We use elements of gamification to help you stick with it, and reward you with points and little reactions from your “diabetes monster” (who you can name, by the way – my daughter helped me pick “Chewcarba” for mine). Additionally, we try to make the information useful and actionable right away, rather than being just a pile of numbers that doesn’t do anything for you until you visit your doctor or diabetes educator. One great example of this is using the location services. Imagine walking into a restaurant and being able to instantly see every meal, blood sugar, insulin dose you’ve ever done there, and how your blood sugar reacted over the next few hours. That sounds helpful, doesn’t it? We think so.
DIABULIMIA HELPLINE: Many diabetics know the diabetes app mySugr Logbook, what they may not know is that though it was developed in Austria you were instrumental in bringing it to the US. What made you so passionate about this particular project?
SCOTT JOHNSON: Absolutely. After gaining a good amount of traction and attention for mySugr Logbook in Europe, mySugr (the company) worked through the FDA approval process (many don’t realize that mySugr Logbook is a class 1 medical device and is registered with the FDA) and asked for some help spreading the word about their launch here in the US. My work in the social media space here along with an existing relationship with one of the early team members at mySugr made it a very natural project to collaborate on. I enjoyed working with everyone at mySugr so much during that project that I’ve been working with them full-time for a few years now.
DIABULIMIA HELPLINE: There are many diabetic apps on the market these days to help you log your blood sugar, what made this particular app stand out to us for our diabulimic clientele is its game-like feel. The cute monster and points you get for testing, regardless of the number, makes it ideal for diabetics getting back into the routine of blood sugar management. Any tips for our new users to the app?
SCOTT JOHNSON: The biggest key is to make it your own. You can name your diabetes monster if externalizing is a useful coping mechanism for you. You can also customize your logging screen to fit your individual wants and needs. If you don’t care about tracking pills, turn that field off. If tracking your mood with a tag is most important to you, move that field to the top of the screen so it’s easy to access. You are in full control of how it looks and what you track. It feels good to have some control over this stuff, doesn’t it?
DIABULIMIA HELPLINE: Absolutely! && on a personal note, I LOVED the ability to truly customize my diabetes monster to MY diabetes monster! You’re also on the Board of Directors for Diabetes Hands Foundation, who sponsors both TuDiabetes and DiabetesAdvocates. What is the number one piece of advice you would have for those looking to get into diabetes advocacy?
SCOTT JOHNSON: There is incredible power in each of our stories. And it’s therapeutic to tell your story! It doesn’t matter the form or channel (blog, twitter, youtube, whatever), just find something you enjoy and tell a little bit of your story. Even if it’s just talking to a friend. The exercise of processing your thoughts and feelings through language is important and the world is waiting to listen.
DIABULIMIA HELPLINE: Any last words for our readers about your many projects in the diabetes world?
SCOTT JOHNSON: Thank you for the great questions and for the wonderful opportunity to share! I really appreciate it!
Thank you SO much for talking to us Scott!! If you live in the San Diego area or plan on attending #AADE16, you are invited to join us for DSMA on August 11th. You do not have register for AADE to attend this event it is opened to the Diabetes Community and Diabetes Educators. I promise we will have an engaging and thought provoking conversation which will include PWDs, Caregivers and CDEs!
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