You Don’t Look Sick?

richthediabetic-gazeI have been uninspired to blog for a little while now.  The Diabetes Hands Foundation asked me to help them on a project recently, which inspired me to write this blog.  Thanks DHF.  I needed a good kick in the ass.  I’d like to point out right away that I’m not writing this today because anyone has accused me of not being sick.  It’s because I realize, that to others I don’t look sick, yet inside, mentally and physically, I am.  I think that for the first time in MANY years, I am experiencing a form of diabetes burnout (I can’t believe I’m admitting that here), and it’s affecting my mental state too.  So I’m going to write this blog in the hopes that it motivates me and makes me understand myself, so that I can turn things around the way I always used to.

When you meet me, I look like any other average 45 year old.  What you can’t see is the scar on my chest from emergency open heart surgery, that was caused by my diabetes.  You can’t see the 3 weeks of recovery it took to be able to walk again.  You can’t see the 3 months of cardiac rehab.  You can’t see YEARS of re-education it took to try to prevent that from ever happening again.  You can’t see the sweat from all the workouts to get myself healthy.  Most importantly, you can’t see the emotions I feel every time I look in the mirror at my broken body.

When you meet me, what you can’t see is the tingling and pain I feel in my feet and toes. The neuropathy caused by over 40 years of high blood sugars.  You weren’t there the first time I got out of bed, and fell down because I couldn’t feel my feet.  You can’t see the self doubt I feel, and the depression it causes, because if I had been more diligent, I may not have this complication of diabetes yet. You can’t see the fear that fills my mind every day that I will someday be “disabled”, and unable to walk.

When you meet me, you can’t see the burning I feel in my body when my blood sugar is high, or the inability to think that I get when my blood sugar is low.  You can’t see the seizures I’ve had as a child from hypoglycemia, or see the memories I have of seizures that should have killed me as an adult.  You can’t feel the burning of lactic acid that I have RIGHT NOW in my muscles because of the acidosis caused by high blood sugar.  (Don’t worry, I’ve got it under control . . . now.)

When you meet me, you can’t see that when I look at food, I don’t see food, I see math. The math of ((carbs – fiber / carb ratio) * fat grams = units of bolus insulin + (superbolus of basal insulin * number of hours basal is disabled)) When you look at pizza or cheesecake, you see pleasure.  What I see is guilt, because it’s nearly impossible for me to get that diabetic algebra calculation correct so that in 3 hours my blood isn’t 400 or 40, and 400 I can live with for a little while, where 40 will make me unconcious, but I know that 400  leads to more numbness in my feet, or future blindness, or possible kidney failure a few years down the road.

When you meet me, you can’t see the underlying depression I experience.  Knowing that my death will be a long slow death of multiple complications.  Knowing that eventually, I won’t be able to feel my feet at all.  Knowing that the only way to postpone this fate, is to get back on the wagon and become diligent again, but being completely uninspired to.

Yeah, I don’t look sick, but  . . . . .  live a lifetime in my shoes, and you’ll understand.

mySugr Challenge Group Recap

frankLast week I led 4 type 1 diabetic friends in a mySugr challenge group on Facebook.  [Click here to learn more.]  I did this because “I” needed motivation, and it’s seemed to cause many in the #doc to want to run challenges of their own.  That’s so cool.  It definitely did the trick for me.  It got me focusing my attention on everything I needed to.

For me, what participating in the challenge did was it made me feel like I wanted to provide a good example, so I was more diligent in checking my blood sugar, and doing correction bolus’s.  It allowed me to see how much insulin I was dosing for all those carbs I was eating!  Holy cow!  That caused me to eat fewer carbs, leveling out that trend line in the app.  It let me see first hand how many hypers/hypos I had in the last 7 days, which was kinda upsetting.  It made me try harder to keep them to a minumum for the second half of the week, which worked!  These are just some of things that helped me.  Now I’d like to share what other challengers have said about being in the challenge group.

“It helped me focus for 3 straight days. It made me focus on what I’m doing in a more structured way. It confirmed how long my digestion is often taking to kick in which helps me have more confidence in what I’m trying . . . “

gerald“It’s very difficult to give constructive criticism on something that seems so perfect, so fun and so exciting! I only have the free version so I have not been able to experience the awesomeness of the full app. I do plan on purchasing this app and recommending it to EVERY pwd that I know.”

“What I like about the challenge group is the feeling of “I need to stay on top of things”. Whether it’s making sure to check BG before meals or when I felt high/low, lasering in on carb-counting, or simply just checking in with my moods and extra-curricular activities, I was able to keep track of trends a little better.”

I’ve been asked to try to think of recommendations for the mySugr team, but like one of my friends above said, it’s hard to find constructive criticism for mySugr when it’s so perfect the way it is.  I too plan on purchasing the full version of the app.  The only thing I can really suggest is perhaps adding a couple more free challenges so that we advocates can have options for running more challenges to get people excited about using mySugr, and improving their diabetes control.  Maybe a 3 day and a 5 day challenge.  Oh yeah, and if you wanted to name them after famous vampires, that would be totally cool.  ;)

 

[DOWNLOAD MYSUGR NOW]

 

How To Host A mySugr Challenge Group

mysugr-animatedmonsterSo this week I’ve been doing a test run of a mySugr challenge group on Facebook.  A 7 day challenge, who’s purpose is to make tracking your diabetes fun, while developing better tracking habits.  mySugr is a FREE diabetes management app for iPhone and Android, and it is hands down the absolute best diabetes app I have ever used.  My CDE has people download it and register while they’re in her office because she believes in it so much.  So far the response to this challenge group has been astounding.  Everyone is engaged, tracking, comparing, learning, joking, and more.  It’s been so much fun, and we’re only on day 3.  We’re a bunch of full grown adults that sit there tapping on the monster icon, to see what funny noises it will make.  You not only get a pet monster, but you also gain insights into your diabetes.  Pretty cool huh?  Yeah, mySugr rocks.

So here is a little template for how I’m running this challenge group.  First, you have to prospect for who wants to participate.  I suggest a few posts on your social networks and include this video with some of those posts for people who don’t know what mySugr is: Diabetes Companion App  You’ll want to keep the challenge group small.  5 or 6 people works great, but an absolute max of 10 people.  I suggest you start with a short challenge of 7 days.  Define the start and stop days.  I did my first one from Sunday through Saturday.

Once you have your list of challengers, create a SECRET Facebook group.  This keeps all group posts hidden for the challengers privacy.  Then customize the group if you want, and invite your challengers to the group.  If they’re not on your friends list, you can add them via email.

Now each challenger will be expected to post a screenshot of their mySugr overview screen or logbook at the end of each day (or the start of the next).  If they want to ask for advice they can, or they can share their wins and losses.  Jump for joy, or ask for a hug.  Your responsibility is to watch who’s not checking in, and go ask if everything is ok, or if they just forgot.  Don’t be annoying, just be a coach.  Let them know you care by checking in with them if you don’t hear from them.

You as the leader/advocate will also want to post daily motivation and information.  I recommend 1 or 2 posts each day.  I’ve been posting videos from the mySugr YouTube channel to help them get to know the app better, and let them know it’s benefits and options.  Below I’ve created a list of posts that you could use for each day to give you starting point.

DAY 1

Make sure to sign up for the free ENDURANCE challenge in your app’s settings screen to support JDRF: http://youtu.be/1IL7h9GY41k?list=PLKhlz-YOvffH1hsRrxkiwhu7ZZ1Ws7T4w

Don’t forget to name your diabetes monster!  What will you name yours?

DAY 2

Check out this motivational video from mySugr as you learn more about mySugr Companion: http://youtu.be/1IL7h9GY41k?list=PLKhlz-YOvffH1hsRrxkiwhu7ZZ1Ws7T4w

The more you track in the app, the more points you earn.  The more points you earn, the faster you tame your monster.  Who’s tamed their monster already?!

DAY 3 

Scott gives us an overview of the mySugr Companion and how to get the most out of it: http://youtu.be/LonCbUbIup0?list=PLKhlz-YOvffH1hsRrxkiwhu7ZZ1Ws7T4w

If you’ve sat there repeatedly tapping your diabetes monster, just to hear the funny sounds it makes, and watching the goofy dances it does, then fess up here.  ADMIT IT!!!  ;)

DAY 4

Fredrik explains the integration of mySugr Companion and BGstar / iBGstar blood glucose meters: http://youtu.be/QGdkTX1NDn4?list=PLKhlz-YOvffH1hsRrxkiwhu7ZZ1Ws7T4w

What has mySugr helped you to discover about your diabetes this week?  What insights have you gained as a result of using it?

DAY 5

Fredrik shows us the value of the reports function of mySugr Pro, and how practical they are for your diabetes care team: http://youtu.be/p4nt1ghFxg4?list=PLKhlz-YOvffH1hsRrxkiwhu7ZZ1Ws7T4w

Raise your hand if you think this challenge group is causing you to track more about your diabetes than you would otherwise.  What do you like most about mySugr so far?

DAY 6

From now on, cables are a thing of the past with mySugr Importer: http://youtu.be/vQkD1HU3MLk?list=PLKhlz-YOvffH1hsRrxkiwhu7ZZ1Ws7T4w

Did you know that diabetes advocate and blogger Scott Johnson is the mySugr lead contact in the US?  Connect with the mySugr team at this link: http://mysugr.com/team/

DAY 7

Here’s a final review of the mySugr Companion app:  http://youtu.be/BTWqq1EZWFs?list=PLKhlz-YOvffH1hsRrxkiwhu7ZZ1Ws7T4w

What did you like most about participating in this challenge group?  Will you be getting mySugr pro?  Oh! Don’t forget to go give mySugr 5 stars in the app store!

 

So that’s the basics of running a mySugr challenge group.  If you decide to run one yourself please leave a comment below and let me know!  I’d love to hear how it goes.

 

 

 

 

A mySugr Challenge Group

mysugr companion juniorDo you know what mySugr is?  (Yes, that’s how it’s spelled.)  If not, it’s a great diabetes management app, unlike anything you’ve ever seen.  Watch the video below to get an idea of why it’s so awesome.  Well, today is the start of our local Quad Cities adult type 1 diabetes support group‘s mySugr challenge.  What does that mean?  Well, when I used to be a Beachbody coach, we would run “challenge groups” for the different programs like P90X3 and T25.  Small support groups of less than 10 people, for motivation.  It was done through FB, by creating a private group, and inviting everyone into that group.  Then each day, I would post videos, tips, motivational quotes, etc.  All of the challengers were expected to report in each day that they did their workout and kept to their diet.

So for this mySugr challenge, 5 of us are committing to use mySugr for 7 days straight, to record our blood sugars and carbs (more if they want to).  At the end of each day, we’re going to post screenshots of our mySugr overview screen, and then post about our struggles and our wins.  If someone doesn’t report in for that day, they get tagged and we ask them if they’re ok, or if they just forgot to post.  My responsibility is just to post daily helpful info.  Maybe a blog I read that applies to what we’re doing, or videos or product info about a mySugr feature not everyone is a aware of.  See how that works?  It’s fun!  You should try it with your local group!  This is kind of a trial run.  Just 7 days, to see if people like it.  If they like it, the next step is to run a 21 day challenge, since it takes 21 days to create a habit.  I’ll blog about this again next week to share what our results are, and any insights we had as a result of doing this.

 

 

 DOWNLOAD MYSUGR COMPANION NOW!!!

 

Jerry the Bear Hits Indiegogo!!!

jerry-the-bear-indiegogoJerry the Bear hits Indiegogo!  For those of you who don’t know what Jerry the Bear is, he’s a high tech teddy bear designed to befriend children diagnosed with diabetes, and teach them about their diabetes in a way that makes it fun and easy to understand.  Through playing with Jerry, kids learn how to give insulin, how to check blood sugar, and how to count carbs.  How cool is that?!

I was diagnosed with type 1 diabetes in 1970.  I was to young to remember what it was like to be diagnosed with diabetes, but I’ll bet my parents can remember what it was like, and I’ll bet they’d have loved to have Jerry the Bear just to teach THEM about diabetes, and feel more confident in my care.

 

 

Jerry the Bear has a new Indiegogo campaign with an inspiring goal.  To put Jerry in the hands of every child diagnosed with type 1 diabetes this year.  They’re funding goal is only $20,000 and they’ve already crossed the $10,000 threshold after only 2 days!!!  More funding means more kids with Jerry to comfort them.  If you’d like to help with this campaign, please click the link below!

 

JERRY THE BEAR’S INDIEGOGO CAMPAIGN

 

FDA Basics for Diabetes Advocacy

masterlabIt seemed to me that most of the effort for the MasterLab was to teach advocates like me how to effect change on the hill in Washington.  Whether it be in Congress or the FDA.  They had a great presentation from Stayce Beck of the FDA explaining the approval process for medical devices like our pumps, cgms, and blood glucose meters.  She was conveying a great deal of info, and using acronyms and terms I didn’t understand.  As I sat there, I thought I couldn’t be the only person that was a little lost, so I’ve been trying to educate myself on the FDA approval process.  Below is a short breakdown in layman’s terms of what I’ve learned.  If I’m wrong about anything, please leave a comment.  I’m certainly no expert, but wanted to share what I’ve learned.

Congress passes LAWS, but executive agencies like the FDA, which are created by congress, issue RULES.  Both laws and rules seem to have the same legal effect.  Congress has little to do with RULE making, but they do have the ability to overturn, or stop a rule from being created, as does the President.

Both the FDA and YOU, the constituent have the ability to create a proposed rule.  The process of creating a RULE, is that a “draft of proposed rule” is created and sometimes submitted to the president for review.  Then it’s created in the Federal Register, an electronic database and webpage, where the details of the rule are explained.  This also triggers the notification to the public of the proposed rule, and the opportunity for the public to comment, which usually lasts 60 days (but that time frame isn’t set in stone).  Once created in the federal register, it’s known as a “docket”.  Stayce explained that this is a very important part of the rule making process.  When we comment, it makes a difference.  Especially when we ALL COMMENT.  Then after the comment period passes, the FDA decides whether to submit a new proposed rule with changes, or go ahead and create a “draft final rule”.  Next, it’s sent to the president for review, and then to congress.  If they don’t disapprove the draft final rule, it becomes a final rule at which point it is entered into the Federal Register and the Code
 of 
Federal 
Regulations.

These 2 documents really helped me understand this process.  For more details about this process, first read this Rule Making Process PDF, then read this Federal Register Tuturial.  Finally, to try to keep up on what the FDA is doing, go to their homepage where you can find links to RSS feeds, how to connect with them on social media, and sign up for their email newsletters.  The link is http://www.fda.gov/.

Diabetes Advocates – MasterLab #masterlab #cwdffl14

masterlab2 days ago, on 02 Jul 2014, I attended the Diabetes Advocates MasterLab seminar at the Children With Diabetes – Friends For Life conference in Orlando, FL.  I was able to attend this seminar thanks to a scholarship from the Diabetes Hands Foundation – Diabetes Advocates (DHF), and Novo Nordisk.  A sincere thank you to everyone at DHF for all the work done in organizing this event, and organizing our travel arrangements.  Words seem insignificant in expressing my appreciation.  THANK YOU.  Also a very big thank you to Novo Nordisk for the scholarship money that allowed these scholarships to be offered to the diabetes advocates program.

The Master Lab seminar was a 1 day intensive seminar designed to make those in the Diabetes Advocates program, more effective advocates.  It provided us with tools and information to teach us how to actually effect change in Washington with the FDA.  We heard from policy makers, from advocates that have built movements, from a panel of people that explained exactly how to talk to your senators and representatives, and much more.  I can’t even explain how valuable this training was.  In the coming days and weeks, I will be releasing blogs, videos, tweets, all with the purpose of sharing what I learned.

It was so nice to meet so many of my mentors in the advocacy world too.  People I look up to.  People I didn’t realize were fans of my blog.  Diabetic celebrities.  I met so many people.  It makes me want to play all of my vacation next year for diabetes conventions.

I want to leave you with a quote from the keynote speaker of the day at Master Lab.  His name is Paul Madden, and he’s the Senior Director of the diabetes program at Project Hope.  He said “I don’t wait for them to cure it. I go on with my life.”

T1D Michael Jackson Impersonator

michael-jackson-smooth-criminal-leanThere’s this insanely talented young T1D I know, that channels Michael Jackson like nobody’s business.  He’s more than a Michael Jackson impersonator, he CHANNELS Michael.  He’s so cool.  I’m such a fanboy.  His name is Jonah, and I think he’s 8 years old right now.  He also happens to be a pretty serious diabetes advocate.  He’s been to the JDRF Children’s Congress, he’s been the poster child for JDRF campaigns, and I’m sure he’s done way more than that too, but I can’t remember.  Oh yeah, he’s even a cosplayer.  He does a wicked Robin the boy wonder.  (Ya know, Batman’s sidekick?)  He does it old school too, like in the TV series.  Anyway, I’d like you to meet Jonah, type 1 diabetic, and diabetes advocate.  I always look forward to watching the music videos his mom posts on her YouTube channel.  Here’s his latest, . . . “Smooth Criminal”.  Enjoy!!!

 

Diabetes Paranoia

Lake MurrayThis week, I’m on vacation visiting my lifelong friend Suzette in South Carolina.  Tonight she suggested calling her friend Amanda who has a boat, so we can go out on Lake Murray for a couple hours.  (They’re the cute ones in the picture.)  It was a beautiful day for this, so I grab my man purse with my diabetes gear, check my blood sugar (#bgnow 180ish with no insulin on board), and throw about 36c worth of smarties into my gear bag just in case.  Then I remember that each time I’ve gone outside to do anything with friends this summer, my blood sugar crashes, so I eat 1 roll (6g carbs) of Smarties just to be safe because it’s pretty hot outside and heat lowers my blood sugar.  My last outdoor activity with friends was a major contributor to my paranoia this time.

As we pull into the parking lot of the marina, worst case scenarios start going through my mind, just for a moment.  Just so I can make sure I’d be prepared for them.  I don’t let the girls know I’m doing this.  In fact, I keep all of the feelings going through my mind to myself until after our wonderful boating trip was over.  So anyway, all of our phones were working and charged.  The girls had carbs in their bag and I had my smarties.  My blood sugar was comfortably riding high.  Starting to climb over 200.  I’m ok with this, because Lake Murray is HUGE and I have no idea how long we were going to be out on the water.  I also didn’t want to limit our trip because of my diabetes.

The breeze from the moving boat is wonderful, the weather is beautiful, and what am I thinking about?  “We’re getting awfully far from shore?  What if the boat stalls?  What if the faulty gas guage lets us run of gas? What’s my blood sugar now?”  Then I realize I’m drinking beer, and I remember that alcohol makes blood sugar drop.  I check my blood sugar again.  Leveled out at about 240.  Good.

We have a wonderful time cruising the lake, then the girls want to jump into the nice warm water, . . . . . and the ignition is turned off.  Inside, that panic alert goes off.  Calm Rich, . . .  calm, . . . calm.  The internal dialog starts “What if it doesn’t start?  Did I remember seeing oars in the hold?  The shore is right over there.  We could paddle by hand if we needed to if my blood sugar crashes out here.”  So I check my blood sugar.  #bgnow 221.  Oh crap.  Calm Rich.  Calm.

The girls get into the water, have a nice swim, we get back to the marina, and all is well.  #bgnow was 224.  I got to enjoy a beautiful couple hours on the late with Suzette and Amanda, but diabetes was always on my mind.  Wait?  Isn’t that a Willie Nelson song?

Does diabetes make you a little paranoid sometimes?  Leave a comment with your thoughts.

A Diabetes Care Team #DHopeConf

diabetes-care-teamToday was the second annual Diabetes Hope Conference. A virtual diabetes conference, meant to inspire hope for those living with the complications that come with diabetes. Rather than going in depth, step by step, into what was discussed, I just want to focus on the overwhelming theme that “I” personally felt from the conference. That theme, was repeated over and over during the conference, and it was that we don’t just need health care providers, endocrinologists, certified diabetes educators, or dieticians, . . . we need a diabetes care team. A CARE TEAM.

A care team doesn’t talk down to you at your appointments. They don’t scold you for not reaching your HbA1c goal. They don’t imply that your complications are a result of your actions. Instead, they act like a coach. You’re a human being to them first, then a patient. They work together with you on your goals, instead of dictating what your goals are. They ask questions to find out how they can best help you, or why your current treatment isn’t working for you. They modify their coaching style to relate to you. A care team CARES.

If you don’t have a care team, you have a choice. If you’re unhappy with the treatment method or style that your current health care provider uses, you have a choice. If your endocrinologist spends every appointment blaming and pointing their finger, you have a choice. Think of it this way. With every office visit, you are PAYING that person to mentally abuse you. Don’t do that!  Make the choice.  You’ll be happier, trust me.

I have an amazing diabetes care team, because I made the choice. I hope this article inspires you to make that choice too.  Everyone deserves to have have a diabetes care team.

The Diabetes Hope Conference consisted of much more than this 1 subject, and it was an amazing event, but this is the one subject that I’m quite passionate about, so that’s what I wanted to write about today.  If you’d like to learn what other topics were discussed, search Twitter for #dhopeconf for the complete play by play.  

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