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How do you choose to live with type 2 diabetes? Monk or missionary?

June 07, 2019 by Scott Johnson

He has a lot to say about how we can all bring diabetes into the light and cultivate healthy, supportive communities around diabetes, and it’s worth watching and thinking about.

Summary

  • Bill’s type 2 diabetes diagnosis
  • Diabetes misconceptions
  • Building communities around diabetes
  • Starting a diabetes blog
  • Frogger vs. Spy Hunter

Resources

Video

Transcript

Scott Johnson: What do you think about when you hear the words monk versus missionary in regards to living your life with diabetes. Stay tuned to hear how today’s guest has made a clear choice here, and why maybe you should, too. What’s up, monster tamers? Welcome to another episode of Live with Scott. Thanks so much for tuning in.

Scott Johnson: My name is Scott Johnson. I’ve been living with diabetes since I was five years old, and the diabetes social media space, that’s you, by the way, has been an important part of my well-being for a long, long time. Thanks so much for helping me along. Hi, Irene, great to see you again.

Scott Johnson: As your host today, I’m thrilled to connect you with my friend, Bill, who I met at AADE’s annual meeting last year in Baltimore. He’s got some great perspectives on living with type 2 diabetes, that I can’t wait for you to hear. I really, really enjoyed our conversation. While we get going, please share a quick hello in the comments. Let me know where you’re watching from.

Scott Johnson: Today’s episode is sponsored by the mySugr Bundle. Get unlimited test strips. And let me get the screen going here today. I’m battling some system issues this morning, so sponsored by the mySugr Bundle, get unlimited strips, automatic supply and refills, personalized support, and more. All for just $49 per month. Learn more at mysugr.com/facebooklive.

Scott Johnson: Now for more on today’s guest. Bill is an engineer with the federal government in Washington, DC area. He’s in his 50s and was recently diagnosed with type 2 diabetes. Since his diagnosis, Bill has been dedicated to eating well, taking his medications, and exercising regularly. And so you will hear, he’s made some amazing progress. Bill is active on Twitter and Instagram as NextWaveT2D, and you’ll hear more about that as well. And he even hopes to one day start a type 2 diabetes blog. I can’t wait for that day to happen. I’m so excited about that. And we’ll talk more about that as well, along with much more in the interview. So without further ado, let’s dive right in.

Scott Johnson: Great to connect with you again, it’s nice to see you.

Bill Santos: Good to see you.

Scott Johnson: Thanks so much for joining. One of the things I would like to do is introduce you to a whole new circle of people here at mySugr. And maybe one of the best ways to start with that is, if you wouldn’t mind telling these folks a little bit about yourself.

Bill Santos: Oh. Well, just to get started, I’m a 50 something guy living in Maryland. Was diagnosed with diabetes a little over a year ago, February of 2018. And since then, I’ve worked really hard at trying to be the best that I can be. Minimizing my risk factors, changed my diet, started exercising more, making sure I take all my medications on time. And it’s worked out to be pretty successful so far. Working with my doctor, I’ve lost over 60 pounds.

Scott Johnson: Wow.

Bill Santos: Yeah, yeah it is a big change. Changed up a lot of the way that I eat. And it was a fundamental change but really some, just some really simple things that made things work really well. I’ve been working out a lot. I was working out before only about two or three times a week, maybe running a mile on a treadmill or riding my bike for a while. And what I do is I dedicated myself to upping that. And now I’m in the gym about five times a week now. And I’m clocking in at about 12 miles a week. So it’s gone up quite a bit. But it’s helped. We’ve seen the weight come off and for a year now, it’s stayed off. My A1C is down, and below six the last two times. So my doctor’s really happy with that. We keep watching that. And so far so good. So that’s kind of just my start there.

Bill Santos: I will say, I’ve been really active in social media. I love the DSMA meetups on Wednesday nights. And just reaching out to anybody really, and talking about just ideas. How other people deal with things, I certainly would like to steal any great ideas out there. And if I’m doing anything right, I’d like to share that with other people, so.

Scott Johnson: I think that’s huge. And you are, your Twitter handle, @NextWaveT2D, I think that says a lot about what you’re about and what you’re doing. And would definitely get into that. But it’s one of the things that you talk about is, kind of helping to shape the changing dynamic of the online space. In showing more of the type 2 diabetes and that type of thing. And I really appreciate you being brave enough to share your story with type 2 diabetes. Because I think for many people there’s a lot of kind of fighting that stigma and guilt and shame. Did you face any of that with your diagnosis?

Bill Santos: I got to say, I’ve really tried really hard to just steamroll any kind of negative thoughts that ever came about this. I’ve worked really hard with trying to help. First learn as much as I can about type 2 diabetes, and what the causes are, how to manage this. What I found first of all, my thought was, all right I’m going to beat this. And what I learned after reading a lot of things is, you really don’t beat diabetes. What you do is you play to a draw every day. And then the next day you punch the clock and do it again. It’s a long term thing. So that’s fundamental change.

Bill Santos: And then when I talk to folks, if there’s a misconception out there, say about excessive amount of sugar intake, or something like that. That’s the typical thing that I hear. I take a moment and I step back, and I go, let’s think about this it’s more… it’s not really just sugar. It’s carbohydrates.

Scott Johnson: Mm-hmm (affirmative).

Bill Santos: I say, if you think about a breakfast with waffles with syrup. That’s a lot of carbohydrates. Which my body, at this point, is not going to handle very well.

Scott Johnson: Yeah.

Bill Santos: It’s not donuts covered in ice cream and chocolate sauce. I don’t know anybody who’s ever had that.

Scott Johnson: Right.

Bill Santos: I did in the past, my friends and I we would go out and watch football or basketball games and have pizza and beer.

Scott Johnson: Yeah.

Bill Santos: And a whole bunch of carbohydrates. And so I don’t do that anymore. I’ll have a slice of pizza every now and then, or I’ll go out and drink beer with buddies and we’ve had some interesting stories there as far as is one Corona Lite at five carbs more satisfying than three Corona Premiums at two carbs a piece.

Bill Santos: Testing blood sugar and things like that. As far as just if anybody has any negative thoughts about diabetes I’d say it’s a condition, it’s something that is livable, and it’s just a lifestyle issue. And I try to get them to join me in that and say maybe you can eat healthier ’cause everybody’s got risk factors that they have to manage.

Bill Santos: It’s more a matter of when I think and not if for a lot of people. I was reading the other that half the population has diabetes or pre-diabetes and a large portion of those are type-two folks. I think there are a lot of people out there.

Scott Johnson: I think you’re right it’s very interesting a couple of points come to mind as you’re talking, so, one, the whole pizza and beer thing is a very common thing right?

Bill Santos: There are so many, so many people that just mindlessly do that as they’re hanging out with their buddies watching sports and to think about that the number of carbohydrates and calories and all that stuff. You don’t think about that until you’re dealing with something like diabetes or something like that.

Bill Santos: There’s a lot there to unpack in this mindless activity that’s going on right?

Bill Santos: Well, also I found that getting back to the donut covered in ice cream. Nobody eats that but a lot of people have pizza and beer and I say you know that may not be great for you I keep thinking about that. It might be great but it might not. So something to think about and then people start thinking about well some of the activities that I do may put me at risk versus this remote idea of some eating entire gallons of icing or something that no one has ever done.

Bill Santos: I don’t practice behaviors that may lead to a diabetes diagnosis when in fact they may do that already they just don’t understand that. And I think that’s huge.

Scott Johnson: Yeah, that’s big you’re right. That’s a big point. The other thing that I think is interesting there… diabetes… there’s so much that’s not yet understood and it’s not just about obesity and calorie intake and those types of things. I saw a headline just the other day and I didn’t click through or read it so I don’t know what’s behind the headline.

Bill Santos: It could be a very misleading headline of course but it talked about obesity continuing to rise but the rates of diabetes diagnosis is not matching the or maybe even declining, I can’t remember exactly what it said but the headline implied that there was some kind of head scratching going on around this mismatch between the obesity and diabetes and I thought to myself, well, I mean because there’s so much that’s not yet understood about this that came to mind as you were talking about that too.

Bill Santos: I’ll tell you what I tweeted about that just not too long ago myself. I think the headline said something like, “Diabetes’ Paradox,” and I thought this is not a paradox if you actually read the data that they state and then the article it said, there are a lot of reasons why there was a bump in diabetes diagnoses recently and they’re coming back because there was better testing you know switching over to A1C versus fasting glucose, discovered a lot more people so you saw that the actual rates jump and now that everybody’s in that hump is past you’re seeing a decline it’s not a paradox necessarily.

Bill Santos: I said in my tweet I said, “This headline could’ve better stated the connection between diabetes and obesity is not quite as certain as it used to be.” And that I think would be a much more positive statement than just saying there’s a paradox i.e. there’s something wrong with our preconceived notion that obesity and diabetes are very strongly linked; whereas, we now have data that says that is not so certain.

Scott Johnson: Yeah, well that’s great and I’m glad that you saw that that helps me kind of de-mystify the headline a little bit. One of the things you mentioned in our talking points before coming on was living as a person with diabetes, missionary versus monk. Talk about that a little bit for me.

Bill Santos: Sure. When I first found out I had diabetes. Diabetes runs in my family. My mother has it, she has type 2 also. And I got a chance to talk with her and I knew she had diabetes but we didn’t talk about it much. She didn’t test much I didn’t see her finger stick equipment or anything like that. And I thought if I’m going to face this do I do this in a certain way kind of like in a removed kind of way kind of like a monk or do I just take deal with this within my own body and not really explain that much to folks.

Bill Santos: Or do I share, do I get out there and let people know, “Hey this is what’s going on.” And part of it had to do with my learning about diabetes fairly slowly it seems like it’s drinking from a fire hose sometimes. There’s a lot out there to digest. Coupled with the weight loss that I saw. Folks that hadn’t seen me in a while would come and say, “You look fantastic. What did you do?” Like there was some magic secret or something. And I would get to talking to them and I’d say, “Well, I’m working out more and I change my diet a little bit.” And they’ll like, “No, but really. What’s going on?” And finally, I just say, “Look I got diabetes.”

Bill Santos: Some people were I actually had some people say, “Well, I have diabetes too,” and that was such a great connection and it’s; I found that it is so much more empowering to let people know that, “Hey, I’ve got diabetes and I’m still a good person and I’m still doing great things.” That’s part of who I am. When I come upon folks and I talk to them and I let them know I have diabetes it’s not like I walk down the street and just tell strangers this but if I’m in a conversation and I get to the point where I go I can’t really do anything else with this I let people know and they say, “I have diabetes,” I give them a little fist bump and I go, “Hey, family. All right.” People just… it’s a great feeling you know.

Scott Johnson: Yeah.

Bill Santos: I’ve always thought that it’s good to be outward about this and it helps because for me and my experience with diabetes I think there are three things that you deal with is: it’s self-care, which I think you could do as a monk or a missionary. Then from there, you get more outward and you got to have empathy for other folks.

Bill Santos: When I talk to other folks who are diabetic or have parents who are diabetic or children that are diabetic you got a chance to talk about the serious stuff and kind of the fun stuff. I often talk to folks and said, “Have you been to Chipotle recently?” That’s an interesting story in a couple of different aspects.

Bill Santos: And then the third thing is mainstreaming and saying, “I have diabetes and I have every right to be here doing as much as anyone else.” So you got to have those three things going on in order to make this thing work. Another thing is that it’s very cathartic to be out there and one of the things I always have talked with folks, especially, close relationships is there’s a grieving process that you have to deal with. For me having been newly diagnosed this is still something that’s still very big in my head.

Bill Santos: Whereas, when you find out you have diabetes you have to make some changes some of them are pretty big and some not so big but there are a lot of changes and you have to learn how to adapt to change pretty quickly that’s one of the first tools you got to get in your toolbox. But one of the things you have to do is you have to sit there and say, “Well, I’m not the same person that I use to be. I’m now on a different path. There’s a fork and I didn’t get to make this decision but I’m on a new path, and I’m blazing a new trail.”

Bill Santos: And as I’m doing that, I always have to remember that I was someone else at some point and it’s important to do those kind of things. And I also, getting back to the social media thing, I like to see this kind of get contagious with folks. Just getting out there and sharing and when you said, “I’m new to this I don’t know if this has ever happened. You may be able to help me with this.”

Bill Santos: I like to see with social media like having meet-ups and I think it will be very empowering for diabetics to say, “Next Thursday, let’s meet at the Starbucks at the Orchard Hill Shopping Center at 10 o’clock.” And everybody come in, get a cup of coffee, 10:30 everybody just check your blood sugar and 20 people at a coffee shop check your blood sugar I think everybody else in the coffee shop would say, “What’s going on?” You know? It would kind of be empowering to see other people doing that, hearing other people’s equipment going off. Maybe posting at least what their blood sugar was at that one time if you’re comfortable with doing that online and saying, “Here’s our blood sugar index.” Add them all up and say, “Here’s what the average was for that coffee shop for that day.” That’s kind of fun right?

Scott Johnson: That’s amazing.

Bill Santos: I don’t know if anybody’s ever organized that you know but-

Scott Johnson: There can never be enough. There can never be enough of those kind of things. I think that there have been I remember in Minneapolis before moving here in San Diego, we would do some just casual meet-ups at basically anywhere that that would host us that would have enough room for everyone. I’ve participated in a few meet-ups in the San Diego area but my world walking around in diabetes is quite type 1 focused and I don’t think we have enough type 2 focused or mixed group focused things like that and one thing that something like that would do is normalize what diabetes looks like to the outside world. The world not living with diabetes and it would help those in the world where ’cause I guarantee there would be other people in that coffee shop living with diabetes who are maybe a little bit afraid to check their blood sugar in a public setting.

Scott Johnson: I was talking with a guest a couple of weeks ago. The Hungry Hungry Hippie, he was recently diagnosed with type 2 diabetes and he runs a popular food blog and one of the things he’s doing with his platform is normalizing what type 2 diabetes looks like.

Scott Johnson: More so for the world around him without diabetes so that they’re not looking at him funny when he’s checking his blood sugar in a restaurant, things like that. I think that’s a big part of what you’re doing, Bill, is you’re not only encouraging other people with diabetes to participate in helping change what the world sees in diabetes, but you’re creating that new normal in the space and that’s a big thing.

Bill Santos: Well I think I’m, I’m honored that you think that I’m like leading this but I think that it’s I’m just one of many voices you know? Getting back, you mentioned blogs. One of the things that I think is going on right now is there’s a generational thing going on and that’s kind of part of my handle or the NextWaveT2D thing.

Bill Santos: It’s that I’m firmly planted in generation X but I’m like the leading edge of it. Early 50’s that’s late ’60’s is when Gen X started. And I think that when you go back and you look at the evolution of blogs you’re like one of the blog kings for diabetes nerds.

Scott Johnson: Grandpa’s.

Bill Santos: And that’s honest, I think that you’ve done a fantastic job there’s a lot of great stuff that you’ve written. And there’s been plenty of others, truth be told back in 2005 I started my own blog, I wrote a blog for eight years and it was just a thing that we did at that age, that technology was there and I think that’s gonna come back around that many people who have type 2 back in 2005, 2010 the demographics would show they may not have been as interested in blogs or the online community and I think that’s starting to emerge now.

Bill Santos: My hope at one point is to start a diabetes blog but wow you and I can have a conversation offline about that it’s a lot of stuff, but I think that there would be more we will certainly see more engagement of folks, my age, my generation not that anybody older than I am isn’t plugged in and working at it but I think you’re just going to see great numbers because it’s just more comfortable with the medium. And it’s going to be a huge thing and if there’s anything I can do to encourage that I’m more than willing to do that.

Scott Johnson: Likewise, and please anyone, Bill anything I can do to help with that let me know and anyone out there listening let me know if I can help in any way. You mentioned a sense of catharsis and when I started my blog and it continues to be very much to this day very much self-serving and it’s just a blessing that it also serves the greater community. It’s a beautiful circle in that way. I get so much from just kind of processing these very vague thoughts and feelings about living with diabetes through words and I think there’s something very powerful in that.

Scott Johnson: Sharing your story with the world can be a bit intimidating I think but I think early on I set three rules for myself and that I never wanted my blog to be another source of stress in my life; we’ve got enough of that anyways. So I decided that I’ll only write there if I have something to say, time to say it, and if I feel like writing. And if those three things don’t line up that topic or idea will just land on a list somewhere until I can do it and so I would encourage you and anyone else listening to go for it, start it and have fun with it. It’s a very cathartic thing and it also serves the world in a great way.

Scott Johnson: We have all changed what Google reports back when people are looking for information on diabetes and that’s a wonderful, wonderful thing.

Bill Santos: Oh yeah, absolutely and thank you for that. It’s not a matter of “if” it’s more “when,” like you said I have to find the time, and I’m working trying to figure out a schedule where I can at least find some space in order to put some words down on a regular basis. ‘Cause I’d liked to I just like that outreach the back and forth with the comment sections and things like that. That’s really important and I think that’s a great way to communicate.

Scott Johnson: Yeah, absolutely. So speaking of communication lets move into language around diabetes. Talking about prevention and risk minimization that type of thing.

Bill Santos: Yeah, well I got to say that it’s interesting to be a diabetic because diabetes seems to be one of the conditions that’s evolving all the time whether it’s the technology or the diet or … but one of those things is the language. And I’ve had a lot of chances to read up on things that people have talked about as far as language and diabetes with respect to focus saying compliant or not compliant and things like that. Really big things that I hadn’t thought of before. And I found that within the type 2 community there’s something else that I have noticed is the juxtaposition of prevention versus risk minimization. I guess “prevention” is easier to say than “risk minimization.”

Bill Santos: And for me, they’re related concepts and I would say yes probably you got your Roget’s Thesaurus they would be synonyms, but within the diabetes community I think that there’s a difference. It’s kind of like with the analogy of a sunburn. If you were trying to prevent getting a sunburn there are some things you can do to prevent it – like not going out during daylight. You can put on sunscreen some days the sunscreen works great, sometimes you buy something at the local store and it doesn’t work and you get a sunburn and people would say if you were trying to prevent a sunburn it was your fault that you got one.

Bill Santos: Well I bought the right SPF, I bought it at a store it looked like a reputable brand but now the blame is on me. With diabetes the consequences are far more dire the complications we can get long-term are irreversible, right. There’s certainly a greater amount of risk. I was reading this morning a British diabetes prevention or diabetes hospital service folks. We’re talking about preventing diabetes long-term and it struck me really, how do you do that?

Bill Santos: If you’re talking about minimizing your risk that seems to be the correct kind of way to discuss this. You say, “Well, are you eating healthy? Are you exercising? Are you taking your medication?” I believe like we talked about before it’s not known what the exact causes of diabetes are but it seems that there is a predisposition for some folks to get it whether you get it in your 50’s or 60’s or 70’s kind of depends on how well you’re doing with managing those risk factors. You know, keeping your BMI down and things like that.

Bill Santos: If you’re minimizing your risk, you’re doing a great job and eventually, it may catch up to you. And that’s a much easier conversation than to say you were supposed to prevent this happening and it happened then there’s a blame aspect to it and I just hope that we can take charge of that and change that conversation and in fact most articles that I’ve seen when there’s a discussion of diabetes prevention and often it’s in the headline within the body of work there are often talks of minimizing the risk of diabetes. So it gets talked in a mixed fashion right now, but I think that “risk minimization” is the headline term and we need to get away from this idea that this is a preventable disease.

Bill Santos: This is something that’s gonna happen to a lot of people if half are already you know either have it or at risk, pre-diabetes at risk that definition we’re now looking at prevention at this point and we need to talk about it in those terms. And risk also is kind of liberating ’cause risk can be managed you know there’s a lot of aspects to that expressing it in that kind of way, using that type of language than prevention which is kind of an either or situation it seems.

Bill Santos: Oh, we had our DSMA not too long ago where prevention was discussed kind of in academic terms and there were several ways in which prevention was described and I had a hard time myself wrapping my head around some of those ways that people were talking about prevention. Like I’d rather talk in terms of risk minimization and I think that if it’s something that everybody can get intuitively it’s better to speak in those terms than to come up with some abstract way of expressing it. Does that make sense?

Scott Johnson: It makes great sense. I also you know I hadn’t thought about it until you’re explaining it but I agree that looking at it from a risk standpoint where you can apply measures to mitigate the risk versus the prevention feeling much more as an either-or scenario. That clicks for me and it also I’m smiling thinking about DSMA and often you know having trouble wrapping my head around things one of the most beautiful things about DSMA is you see things from so many different perspectives and people that I often would not have thought about before too and so that’s why I started smiling it’s just missing DSMA I found it a little bit harder to participate here in the west coast because it happens at 6 p.m. it’s a harder time for me, but I need to put it in my calendar and make sure to get back in there.

Scott Johnson: So for the folks listening who may not be as familiar, DSMA, is a weekly Twitter chat that happens on Wednesday evenings, 9 p.m. Eastern Time, 6 p.m. Pacific Time. And you can participate just by searching or following the DSMA hashtag on Twitter and that stands for Diabetes Social Media Advocacy. And let us know if you want some more information on that we’ll get you plugged in with all the right stuff. It’s super fun it can be quite fast-paced if you’re not if you haven’t tuned in to Twitter stuff before but it’s fun and you’ll get used to it quickly and I really encourage it. It’s a great way to connect with others.

Bill Santos: I love that also and the way that I always tell people about it is I say it’s my one-hour week where it’s just stream of consciousness dump it out there respond as best you can and just a few moments give me just a couple of characters of what your thoughts are on this. I am so happy with the questions that come through there some of them are obtuse and you go, “What are they trying to do there?” You try your best. Some are absolutely dead on this is something I’ve been thinking about and some of don’t even have to do with diabetes and you just go, “Oh well this is the last book I read,” or “This is what I did this week to volunteer somewhere.”

Bill Santos: It is a great way to just talk with a lot of really great people.

Scott Johnson: Yeah, absolutely and before we get into the last talking point, DSMA, a DSMA event is where you and I met at the AADE Annual meeting in Baltimore what brought you to- so AADE Annual meeting is a big meeting that’s primarily for diabetes educators and professionals and I think it’s really awesome and big of you to kind of immerse yourself into this again this fire hose of information around diabetes. How did you hear about that and what made you throw yourself into that event last year?

Bill Santos: That was a lot of fun I got to say it was very nervous going in there. ‘Cause I literally did not know anyone. The way it worked for me was that I had my diagnosis since February of 2018. I started searching Twitter and Google and Facebook any place I could look for information about diabetes and had gotten word that there was a conference coming to Baltimore, I live not too far from Baltimore. I’m about 45 minutes away. And I thought, you know if I want to meet people with diabetes that’s kind of the place to go. At one of the DSMA events was we’re coming to Baltimore we’ll be there and I thought I’m going to show up and it was great. I was so happy to be there and there was a great conversation it was very odd sitting there typing and everybody else is sitting just two feet away from me typing just as fast and you would come up and you guys did a great job.

Bill Santos: You had it on the screen behind you there. That was so much fun it was one of those nights where you said wow I could do this for a while. I can go for more than an hour doing this. It was really cool to just meet you and Cherise and a bunch of other people. Just fantastic stuff. Who is the guy that runs Tidepool his name-

Scott Johnson: Christopher Snider.

Bill Santos: Yes. It was great to meet him and it was just a great event. That’s how I kind of done this is if I’m a diabetic and I want to go and meet other diabetics I find that I got to go and meet them where they are. I’ve not gotten anybody to show up on my local coffee shop yet to test their blood sugar-

Scott Johnson: Don’t give up on it yet …

Bill Santos: I know but I figured that it’s very cathartic to meet people in person it was a great-

Scott Johnson: I agree and brave of you to come and much much appreciated and I find there’s no replacement for those in-person connections, social media bridges the gap in between and I need both of them in my life absolutely. And I’m so grateful that you took the chance to come and check it out. You know some of those chances that you take are going to be kind of what I call, “blank missions,” where you go and it’s like, “Eh, this really,” this didn’t fit what I was looking for and others are gonna be life changing events. I love it. I’m so glad that you came.

Bill Santos: I was happy and I’m so glad you remember that’s awesome.

Scott Johnson: Absolutely. It’s something that I won’t forget and kind of watching–these guys mySugr they keep me so freakin’ busy which is great, I would have it no other way–I can’t interact in the community as much as I would like to and I miss that but again I would have it no other way like I’m doing what I love but I’m watching so I see what you’re doing out there and yeah.

Bill Santos: Thank you.

Scott Johnson: You’re doing great work for everyone out there who thinks that your voice isn’t making; you can’t see the ripples that your voice is making in the world and there’s someone out there that needs you like who knows Bill there’s someone out there that really aligns with your story and their life has changed because of you being brave enough to share your story. That’s big.

Bill Santos: Yeah.

Scott Johnson: You mentioned some of the changes you’ve made and wrapping up your exercising activity and one of the points that you mentioned to me prior to coming on was the use of activity trackers and being an activity tracker whisperer. I’d love to hear more about that.

Bill Santos: Well, I talk activity tracker as I said prior to my diagnosis I was already working out I had gotten me the Fitbit bug the craze and had gotten one of those and it started there. I currently have a Garmin watch now. Pretty interesting. I’ve tried a number of different ones and I got to say I hear an echo when I see on Twitter or Facebook that somebody’s gotten a new glucose monitor, a new Dexcom and that they just can’t put it down. They’re getting this data streamed that’s going on.

Bill Santos: The activity trackers can give you a very similar kind of feeling as far as activity, intensity minutes. One of the things that we always hear as far as guidelines for exercises, you want 30 minutes of activity a day while these watches do track that for so you can see that they almost all track your heartbeat, they track your steps. You can set them to track different activities like bicycling, swimming, running and things like that. Now, caveat they’re not medical instruments, they’re not to the sense as a glucose monitor but they do give you some feedback as far as resting heart rate, just overall exertion that you can use.

Bill Santos: One thing we all learn as diabetics is data is very powerful and this is just another stream that compliments the data and gives you a more complete picture of what you’re doing. If you keep a diary of what food you eat, this is kind of a diary of what your exercise is. And it’s kind of also is in the social media world. There is an entire ecosystem out there that I think is not well utilized right now by the diabetes community and I would like to see it expand more. It is a little bit vulcanized because if you have a Fitbit watch you can connect with other Fitbit folks and their community.

Bill Santos: And I know Fitbit is at the leading edge of trying to incorporate their work with diabetics and I applaud them for doing that. Garmin another manufacturer has their community and you can make connections within the Garmin world. Same thing with Polar is another brand that’s out there. So that’s a little limited but all of these actually taught online apps that are shared throughout the internet community. So there’s another level, this is like a great blog post by the way right?

Scott Johnson: It could be your start Bill. This is could be the catalyst this could be your first, the entry, it’s your blog online.

Bill Santos: This is it. So here’s the preview right. Yeah, but as I was saying no matter which watch you have most of them you can take your data and export it to MapMyFitness which is a big one and Strava is a big one. Strava is very similar to Facebook only it’s activity and fitness oriented. So if you do a run you can upload that to Strava and it’ll tell you how you did against yourself whether it was a personal best time or not it will also rank you against other people who ran the same course. Like if you have a local lake that you do a walk around you can see how other people did with that and how long they took or what you know …

Bill Santos: So it’s very engaging but not many diabetics out there. There are many people who as part of like a social media you can form clubs and groups and things like that with many of these apps. I’ve done a lot of mining on these not a lot there seems to be a strong affinity with the American Diabetes Association Walks and Bikes the Tour de Cure people will create groups associated with those specific cures in their hometown or tours in their hometowns, but not in everyday, “Hey, I’m a diabetic and I did some exercise today and I’m posting and we can all share.”

Bill Santos: I think that is such a great way to get everybody connected now there’s some privacy concerns and everybody should read Terms and Conditions, get comfortable with it but if you’re comfortable with sharing where and when you exercise it would great to be able to say, “Hey, I saw Scott took his bike out and road it around the neighborhood.” I rode my bike at the same day and it’s hey we both did this. That’s a great way to get in touch with each other and to make more connections and to also increase your wellness ’cause you’re getting out there and exercising.

Bill Santos: For as many people who get excited about what the shape of their glucose curve looks like there are just as many people out there who are excited about how many steps they got in that day. So there’s a kinship out there in technology of folks who may not even be diabetics that you could also find and I think it’s something we should really as a community look at.

Scott Johnson: I agree and I think that there’s got to be I’m guessing but I would bet that there are people with diabetics in those activity communities that maybe aren’t talking about their diabetes yet or not open to sharing about their diabetes; likewise, on another kind of track in there tons of stuff and I think this is a lot of what your point is is that so much we can learn from those that group of people that were not making use of and I agree with you it’d be tremendous to connect and get as much information and learning from them as we can.

Bill Santos: Yeah.

Scott Johnson: I also think we have kind of a step up on many people in the fitness space and that we have another point of at least another point of data with our blood sugars that they don’t have we can watch and see how our body responds to activity on a whole other level which I think is kind of cool.

Bill Santos: And I got to tell you the interesting thing that I found in my experience is the folks that I see at the gym most regularly not close friends, but folks that I say, hey, I’ve seen that guy here four nights in the last five nights that I’ve been here. The guy or that lady also has diabetes it’s kind of like we’re both here for the same reason and until we actually have that conversation you’re never going to know that.

Bill Santos: You know it’s something that you start to say, “Wow.” There are a lot more people out here in this space doing these activities for the same exact reason that I’m here and I didn’t know that I was actually among many people who are could be friends, could be, at least, shared experience-ers. Just being at the gym alone you’re there with people who are in the exact same position you’re in and it just takes a little bit of time to figure that out.

Scott Johnson: Yep, absolutely. I tell you it makes me think I so I play a lot of basketball at the YMCA in Minneapolis before moving here and I bumped into more people with diabetes in the locker room you know just thinking about kind of random in the wild diabetes connections more happened at the YMCA locker room than anywhere else I can think of. You know kind of hearing the bottle of test strips open or spotting an insulin pump infusion set or maybe a FreeStyle Libre or Dexcom or whatever it may be. It was amazing.

Bill Santos: Or just a medical band or something.

Scott Johnson: Yes. Right. You’re right.

Bill Santos: There’s plenty of clues out there you just have to be a little more perceptive, you know.

Scott Johnson: Yeah. That’s right. Anything that we haven’t talked about or haven’t asked about that you want to touch on?

Bill Santos: I don’t know. I had a question for you, once again, I’m completely new to this and I’m not … this is not my experience is a question about type 1 so I don’t know. So please don’t quote me on this. But I have noticed in the last couple of months when folks talk about the display on their glucose monitor they often when they see it, it goes up and it goes down. They refer to it either as “seesaw” or a “rollercoaster.” For me, I don’t know maybe I see things different I’ve always thought that when I’m dealing with my own blood sugar and I know what my highs and lows are what my boundaries are I often instead of thinking of it as a “rollercoaster,” ’cause mine fluctuates a whole bunch too.

Bill Santos: I often think in my high limit, my low limit is river banks and it’s my job as a river pilot to make sure that I don’t get in the rocks or in the mangroves and crocodiles. That’s how I’ve always thought about it as is that a powerful image to say that you’re navigating a river you know ’cause for me navigating a river in a day is different than at night. It’s different in the winter than in the summer. Sometimes it rains, sometimes the water is calm and glass-like, but it’s always the river and you always have to find a way to navigate it. That just seems to me to am I wrong in that assessment does that help at all?

Scott Johnson: Not at all. I like that quite a bit actually. I like that quite a bit.

Bill Santos: Just something I thought of.

Scott Johnson: I like that a lot. I like it. I think I’m trying to think kind of back to where I first heard the “rollercoaster,” term and I think it’s quite historical from you got that two-dimensional graph on the paper or the computer screen.

Bill Santos: Well, I think it’s part of it for me at least when I think about that is all of these kind of have a Super Mario Brothers aspects to it that it’s always a left to right scroll and you never get to go left it always goes right. Being an old man I always thought of it more turn that on its edge and do it more like a spy hunter video game where it’s just scrolling up and then you kind of get a river image a little bit more. Kind of snaking back and forth, riverbank to riverbank.
I don’t know if that helps, but it, you know …

Scott Johnson: I like it I think there’s something there. And you know what that sounds like another blog post.

Bill Santos: It’s not my experience so I get concerned that I would be out of my lane there I just want to talk about these things with folks and see if it works for them. Maybe I’ll write it from that perspective.

Scott Johnson: I love that.

Bill Santos: Give me feedback, I’d like to know.

Scott Johnson: When that post hits the airwaves you let me know and I’ll be sure to share my feedback in the comments.

Bill Santos: Sure thing. Thank you Scott.

Scott Johnson: I love it. Well, Bill, I’ve had so much fun catching up with you. Again I really appreciate all that you’re doing in the space and it makes a difference. I get the impression that you’re having fun with it and I’m glad to see that and I look forward to watching more and participating and please reach out to me and us here at mySugr whenever we can do anything to help.

Bill Santos: Yeah, this has been a great time. Thanks for inviting me. This was awesome.

Scott Johnson: Yeah, my pleasure.

Scott Johnson: So there you have it. What did you think about that chat with Bill? Once again today’s episode is sponsored by The mySugr Bundle, get unlimited strips, automatic supply and refills, personalized support and more all just for $49 per month. Learn more at mySugr.com/facebooklive

Scott Johnson: and then be sure to tune in next week where I catch up with Renza to talk about traveling with diabetes, connecting with diabetes friends in different countries and why the language used with diabetes is important.

Scott Johnson: So thank you so much for joining today. If you haven’t already please give us a like, share this video with your friends and have another amazing day. And I’ll see you next week.

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