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JDRF TypeOneNation Summit in San Diego

I attended my first JDRF TypeOneNation Summit since moving to San Diego and had SO MUCH FUN!

My father-in-law and I spent countless hours watching boxing together over the past 20 years, so I was excited when I realized who walked in the room to kick things off.

None other than former pro boxing IBF World Champion, Paul “The Ultimate” Vaden! He’s been supporting JDRF since 2004 and was elected as the San Diego Board President in 2018. 

JDRF facilitated tours of the diabetes lab at the institute. My favorite station was the microscopy station, where we learned about the complexity and how much there is left to learn about how and why the immune system attacks our beta cells. 

Did you know that the ability to look at and test with living pancreatic tissue has only been around for about five years? And until just recently, it was only possible to keep those samples alive and run tests for about one day? That’s not enough time to figure out very much! 

Thankfully, now technology and science have advanced to a point where living insulin-producing tissue can be kept alive, tested on, and accurately viewed for about one week. That’s better, but still not very much time.

Is it just me, or have you also assumed that type of thing was already possible and had been happening for a long time? 

That’s why I find these events essential and exciting. They calibrate my expectations and remind me of just how complicated the puzzle of diabetes is.

The next station was handing out new pancreases, though, which was pretty cool.

nPOD Stress Pancreas

Then I bumped into an old friend from waaaay back in the day who I didn’t even know lived in San Diego! First time actually ever meeting in real life, by the way.

Just before lunch, I enjoyed Matt from FTF Warrior & Pardon my Pancreas talking about metabolism, nutrition, and fitness.

The closing keynote was terrific. Eric Tozer talked about running the World Marathon Challenge® – seven marathons in seven days on seven continents. Yes, really. 

Eric running in the foreground, the team plane in the background

Eric talked about the crazy schedule, and wacky timezones, and jumping from hot to cold and back again, and that the flights between countries being the only time they had to rest, recover, sleep, and eat anything. 

What stuck with me the most was Eric emphasizing that mental strength was such a significant component in a challenge like this. He said living with diabetes was an asset there. And it’s the same for all of us.

With diabetes, there is no quit. It’s not an option. When our mind, emotions, or even our bodies start jabbing at us with negativity, we have to figure a way through it. There is no other option. 

It reminded me just how strong and able I am. And so are you.

Eric, Lorraine, Stephanie, Scott with Lorraine and Stephanie holding Eric's race medals.
Eric, Lorraine, Stephanie, Scott
and all of Eric’s medals!
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39 years of living well with diabetes – celebrate with me!

Today is another special day for me!

Thanks for joining me on this little celebration hike that I’m doing today. It’s a pretty big day for me!

I am celebrating 39 years living well with diabetes, and I thought what better way to do that than to get out for a little hike. There are all these awesome trails that couldn’t be more than five minutes away from my house. So, I got the day off work, I dropped my daughter off at her job, I have a little time to myself, so I’m gonna get out and enjoy the day a little bit!

Celebrating diaversaries

Why on earth would anyone celebrate the day they were diagnosed with diabetes? Sounds crazy, right? And I don’t know if celebrating is quite the right word, but taking some time to acknowledge all of the hard work that I do to take care myself, all of the times that diabetes kicks me in the teeth where I get knocked down, and then fight my way back up again.

That’s what makes us special. We somehow figure a way to fight back and get back up again and keep going. And I encourage all of us to pat ourselves on the back more often to recognize that we do amazing things every day with diabetes!

Yet we normalize it like it’s no big deal. But it IS a big deal, and we should celebrate all that work that we do! And if there’s no other time that we do that, make it your diaversary! And if you don’t know the day, celebrate the whole month! Or pick a week! Or something! But celebrate yourself. Celebrate the work you do with diabetes because it’s special and it’s unusual and no one else around you has to do that – and you deserve celebration.

So 39 years ago, on April 26th, 1980, I was diagnosed with diabetes. And you know what, I’m doing great. In fact, I’m doing better now than I’ve done in a long time. And that’s pretty great. All of you have a lot to do with that, and I’m so grateful.

Life is something to enjoy, what a blessing to be able to get out here and enjoy something like this on such a special day. Thanks for sharing the day with me.

Celebrate yourself, you deserve it.

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The power of small, simple steps

This is a sponsored conversation written by me on behalf of SPLENDA® Naturals. The opinions and text are all mine.

I can be a little stubborn sometimes. I believe being stubborn can be a helpful attribute – especially for diabetes management and trying to stay healthy.

When diabetes throws me a curve ball, it’s up to me to recalibrate my expectations and get back on track. Being stubborn is useful in those cases, but tends to undermine my efforts in other ways.

Simple steps

Too often, I try to change too much at one time or try to make huge changes quickly. I make the mistake of thinking I can just “stubborn” my way through changes and I don’t take a strategic approach. But I’m learning to appreciate the power of simple, consistent steps thanks in large part to noticing SPLENDA® Naturals and how they always highlight the power of small, consistent steps in such an empowering way.

Earlier this summer I shared that I was working with them on a few of the small steps of my own that I wanted to work on. Some of those steps included enjoying smoothies in the morning and drinking more water. Or maybe trying to add some coffee or tea with SPLENDA® Naturals instead of sugar to satisfy my urge for sweetness without adding calories or carbs and drinking less Diet Coke during the day.

My daughter often enjoys iced coffee, and I decided to try some of that too (also sweetened with SPLENDA® Naturals) as an occasional drink. You know what? I really like it and have started switching that into my beverage mix through the week, too.

I started many mornings with a smoothie, which was rich, tasty, and satisfied my sweet tooth yet didn’t have extra carbs or calories because I used SPLENDA® Naturals instead of other sweeteners. I felt satisfied and snacked less through the late mornings, which was a nice bonus.

That’s it. I didn’t set up big goals or giant behavior changes. I’ve made that mistake before and failed too many times. The plan here is small steps that are easy to do. In the past three months, I have made a lot of small steps. I haven’t been perfect, but I’ve made progress. Much more progress than without small steps.

I’m also working with a coach who’s teaching me to celebrate my wins, no matter how small. Learning to change the energy around my efforts is another important aspect of positive change which has made a big difference.

A sudden realization

One morning in September I realized something huge! It dawned on me that through the small steps above (drinking more water, coffee & tea), I was drinking less Diet Coke at work. How much less? About half as much!

Incredible!

Note – I did not take the approach of limiting my Diet Coke consumption. Instead, I started the small by drinking more water, coffee & tea. I also didn’t attach any numbers or quantities here. I drank those things first and whenever it crossed my mind, then I enjoyed my Diet Coke with no regrets.

It didn’t hit me that my Diet Coke consumption was cut in half until I realized my regular supply run was lasting twice as long!

Don’t wait – just start

One of the biggest things I learned working with SPLENDA® Naturals on this campaign is the importance of not waiting to start something. For example, it’s common for me to come up with a plan, but not start anything until Monday.

Monday’s are great days to start, right? Yeah, of course.

But you know what other days are good days to start? ANY DAY! I don’t have to wait for Monday to start or to get back on track! Waiting for Mondays is just a fancy way to procrastinate for me.

So I stopped waiting for Monday. As soon as I decided on a change or behavior I wanted to start, I jumped right in no matter what day of the week it is. Likewise, and maybe more importantly, when I fell off the horse I didn’t beat myself up or procrastinate by waiting for a clean, fresh start. I pulled myself back together and started again no matter what day of the week it was.

That behavior change is huge all by itself, and I appreciate this SPLENDA® Naturals campaign for helping me see that.

Have I noticed anything else?

Yep, you bet. My thinking feels clearer and I seem to have more overall energy. I also feel empowered by learning a new skill – leveraging the power of small steps.

I’m also proud of myself for getting back on track so quickly whenever I found myself struggling, and that’s a big win.

How about you? Have any simple steps or small changes lead to big improvements in your life?

Disclosure:

This is a sponsored conversation written by me on behalf of Splenda. The opinions and text are all mine. Comments submitted may be displayed on other websites owned by the sponsoring brand.

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Book review of A Future With Hope by Carl Armato

A Future with Hope by Carl Armato on Amazon

Carl Armato was diagnosed with type 1 diabetes at just 18-months old in 1966. Immediately thrown into the fire of figuring out diabetes, his family rallied around him and together, they started the journey of fitting good diabetes care into a full, faithful, and active life.

He grew up to become President and CEO of Novant Health, one of America’s largest and most respected healthcare organizations, and that’s a special story. It’s an encouraging and entertaining tale told the pages of A Future With Hope and one that tells the tale of learning to share his story of diabetes.

Refuse, refuse, refuse

Opening the book with a story of talking to a teenager with diabetes just after a presentation, Carl plants the seeds that continue to grow throughout the book.

“…refusing to buy into the notion that I couldn’t be a champion tennis player or an all-star shortstop; refusing to believe I couldn’t fall in love, marry and have a wonderful family; refusing to think I could never be a successful professional, just because of diabetes.” he explains to the teen.

Refuse, refuse, refuse. Can you do that?

Carl S. Armato

Surroundings and support

A central figure in Carl’s story is his father, Lucien Armato. From the early pages of the book, Carl’s family is supportive, but it’s his father’s attitude, understanding, and dedication to Carl’s diabetes care that really shines.

Lucien turned diabetes into a positive for Carl, empowering him to see that having diabetes gave Carl a better understanding of how others with illnesses really felt and that he could be of great service to others because of the compassion diabetes created in him.

Carl points out that we all need a strong support system around us, even if it’s just one or two people, and that we need to support our supporters.

He says that living with diabetes means you are a conqueror inside and your spirit as an overcomer can contribute a lot to the world! I agree with him 100%! I am so proud of and impressed by everyone I know who’s living with diabetes.

I also enjoy how Carl decided that staying tight-lipped about his diabetes deprives him of the opportunity to show others that how successful he can be, even with diabetes!

The power of stories

Chapter eight is titled “Helping Others Find Hope.” There is a line that makes me smile because it’s a lot like the diabetes community online. Carl says “When I talk to people about diabetes, it is clear they want to hear the stories, not just the medical information they hear in a physician’s office.”

It’s my belief that the people listening to Carl value the sense of normalcy that comes from hearing his experiences with diabetes. And thanks to his parents, Carl excels at playing up the possibilities rather than focusing on well-known dangers.

Carl talks about people with diabetes learning by doing, and I couldn’t agree more. He says, “it’s difficult to learn this from a little booklet; everyday life events don’t come at you packaged and succinctly coordinated. You’ve got to be able to account for the curveball that life can throw at you on any given day…”

A world bigger than his own

Carl is using his life experience with diabetes and position at Novant Health to make a huge difference on the general population. Also in chapter eight, he shares that two years ago, Novant Health’s patient data revealed that African-American women with diabetes had a 20 percent greater chance of returning to the emergency room and being readmitted to the hospital than other patients with diabetes. Carl drove change in their practices to make sure they have access to medications and education, and now the increased risk among this group is only 3 percent. That’s just one example of the positive change happening within the system Carl is leading.

His father’s eyes would shine when Carl talked about working in healthcare because of the empathy and understanding diabetes nurtured in Carl. His dad talked of creating delightful places for people to receive care thanks to Carl knowing the experience firsthand. Can you imagine receiving care in somewhere that’s delightful? I love that idea, and thanks to Carl, we’re well on our way.

A Future With Hope is a fun, quick, and inspiring read, and I appreciate the opportunity to learn more about Carl’s story. I look forward to the change he’s making in the world!

Every time I heard a no – No, you can’t play sports. No, you probably won’t be an accountant. No, you can’t pursue your dreams – I tried to listen instead to a yes, from inside me.

Carl S. Armato
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Time without CGM? No big deal, right?

I am a big fan of continuous glucose monitoring (CGM). I’ve used CGM for a more than a decade. I think it’s a tremendously valuable layer of information, and I’d argue that continuous glucose monitoring has been the the biggest improvement in diabetes since blood sugar monitors became available in the mid 1980s. 

Aside from the high and low alerts, continuous monitoring brings so much awareness of blood sugar levels. It’s possible to actually see how food, exercise, insulin, stress, and more play games with our blood sugars – and we can see that in almost real-time. This is something many of us never thought would be possible, and now it’s an everyday reality for many people with diabetes. 

Not long ago, my Dexcom G5 transmitter reached the end of its 3-month life and died. It was the last one I had. Thankfully, I was already working with Dexcom and my new insurance to upgrade to the Dexcom G6 system, but it was taking a long time. Dexcom’s service was great. They did everything they could to expedite the order, but we encountered problem after problem.

It’s no surprise, right? These things often take longer than they should. I was in the middle of starting on new insurance, transitioning into a new endocrinology office, and setting up my new care team, so there were a lot of factors involved.

I had to face the reality of time without a CGM. I wasn’t happy about it. But how many years have I done diabetes without? I figured the time without would be a pain, but tolerable. To up the stakes even more, I’ve been using a DIY Loop system to automate my insulin delivery and adjustments. But with no CGM in play, my Loop system was also offline. 

No big deal, right? I got this.

The reality?

How did it feel taking a big step backward?

It sucked. Suuuuuuuuuucked. I hated every moment spent without the extra information that CGMs provide and the automation that Loop provides. I had many more highs and many more lows.

Doing the best I could, checking my blood sugar often, and applying all of the lessons learned over many years, my diabetes management was still awful.

To me, it’s clear that I want as much automation and help as I can get in managing my diabetes. I want CGM in my diabetes management toolkit, and I want automated insulin delivery in my diabetes management toolkit. No questions asked. 

Back online – what’s next?

Things got so much better once my Dexcom G6 system arrived and I got back online. With highly-accurate CGM information flowing into my DIY Loop system, my days and nights have been much better. Not perfect, but much better. And I’m so impressed with the Dexcom G6 system. The accuracy is amazing, and the automatic insertion is a thing of beauty. I love it.

CGM and automated insulin delivery is something I wish everyone could easily afford and use. 

There’s a lot happening around automated insulin delivery and it’s going to be an exciting time for us. One company moving things along is Tandem Diabetes Care. Their current t:slim X2 with Basal-IQ™ technology suspends basal insulin based on CGM readings when low blood sugars are predicted.

I’m wearing a trial t:slim X2 with Basal-IQ for about 90-days. I’m excited to share my experiences as time goes on. I’m also very excited about their Control-IQ™ technology which is currently in trials. Stay tuned!

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I refuse to accept it as normal

I am thankful for every ounce of progress and advancement. I use all of the tools and technology I can get my hands on. And I’m grateful.

My life is much better today than it was years ago.

But do not forget that we stab ourselves with sharp metal objects, squirt some stuff under our skin, and bleed on things to see if we guessed the amount right.

This is what passes for normal in our lives. IT IS NOT NORMAL!

via GIPHY

Do not ever ever ever give up pushing for better. This normal is not the normal I want for the rest of my life. I am not impressed. The bar is still very low.

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A wise birdie once said, focus on progress not perfection

This is a sponsored conversation written by me on behalf of Splenda. The opinions and text are all mine.

Big Moves

My family recently finished a big move, relocating from Minneapolis to San Diego for work. I was born and raised in Minneapolis, I was diagnosed with diabetes there, I met my wife there, we raised our kids there, and our first grandchild was born there. Moving was no small decision, but c’mon… Minnesota winters versus San Diego? It’s a no-brainer, right?

The mySugr office is on California’s historic Pacific Coast Highway, and we’re less than three blocks away from Moonlight Beach. Life feels pretty grand for the Johnson family right now. Did I mention no more Minnesota winters?

Big Dreams

We’ve known about it for a while, but preparing for the big move took a long time. There was lots of planning to do, a ton of logistical details to work out, a million people to coordinate, and sometimes just a lot of waiting.

In all of the excitement, I started a list of all the things I want to learn after settling in.

  • Surfing – I live in one of the world’s legendary surfing spots. I have to at least give it a try!
  • Yoga – The area is also world famous for yoga, which is something I’ve wanted to learn. I’ve been intimidated by it in the past, but there’s no better time than now to give it a try!
  • Speaking German – Many of my colleagues at work speak German, and I think it would be a great skill to add. Thankfully, work is bringing in a language instructor pretty soon. I’m excited!
  • Bass guitar – I don’t know if I have any musical talent, but I would love to learn bass guitar. It also feels like a therapeutic release and change of pace from my regular workdays.
  • More basketball – I enjoy playing basketball, and want to keep enjoying it for as long as I can.

Small Steps

I spent most of March, April, and May facilitating the move. Everything went well. I feel like the dust has settled, and we’re finding our way again. But it took a lot out of me. My physical fitness and health were not a priority while coordinating the move.

Looking at my list of things I want to learn, over half of them are physical (surfing, yoga, and basketball)! It would be a mistake for me to jump headfirst into any of them, so about a month ago I started taking small steps in the right direction and exercising a little bit at a time.

My friend at work introduced me to the beach stairs. It’s a great workout that gets my legs and heart cranking! On a full day, we cover nearly four miles of coastline going up and down every set of stairs along the way.

For the first couple of weeks, I couldn’t do every staircase. It was just too much for me. Now, I’m doing every staircase and even play a few games of basketball afterward. Pretty soon I’ll be flying up those stairs!

The Next Steps

I’m far from where I want to be. The guys on the basketball court are taking me to school, and I don’t feel anywhere near as fit as I’d like yet. But I know I’m making progress. And one of my favorite mantras ever is “focus on progress, not perfection” (thanks, Birdie).

With that in mind, I often think about how I can take one little step closer to where I want to be. I’ve got the exercise piece moving along, and that will get better with time (and patience). Maybe finding a few easy food/drink tweaks in my day will move me forward a little bit, too. I know from experience that small, simple steps can add up to big changes over time.

And right on time, I received a request from SPLENDA® Naturals Stevia Sweetener to sample their 100% natural stevia and share my thoughts with you. Perfect!

I’m happy to find this the best tasting stevia I’ve used. There’s no bitter aftertaste and it’s 100% natural. According to the product information I received, SPLENDA® Naturals is made with stevia extract Reb D instead of Reb A (stevia extract Reb A is known for bitter aftertaste).

The Plan

I’m not going to learn to surf while doing yoga, speaking German, and playing bass guitar in the next two weeks. I know it’s an awesome visual, but let’s wipe that image from your mind right now. Again, 3/5 of my things are physical and exercise related, which I have a good start on. Another great lever to pull here is some small steps around my nutrition and hydration habits.

What I am going to do is:

  • Start a few of my mornings off with a nice fruit smoothie. I’m notorious for skipping breakfast and going right into work. I have early morning meetings and jump right into a busy day. I think it would be an excellent small step for me to get a nutritious start to the morning. Frozen berries, protein powder, plain yogurt, SPLENDA® Naturals, some ice to thicken it up and off we go! Do you have any favorite smoothie recipes? Fill me in!
  • Reduce my Diet Coke consumption. I have no interest in eliminating Diet Coke from my lifestyle. Sorry. It’s one of my things. It brings me joy.
    • However, I admit that I probably drink too much of it. On that point, I commit to swapping some of my Diet Coke for water, and I’ll also introduce some strong coffee and tea through the day instead of more Diet Coke.
    • In that coffee and tea, I’ll use SPLENDA® Naturals instead of sugar to satisfy my urge for sweetness without adding calories or carbs.

I’ll work on these small steps and keep you all posted as I go. It’s important to know that small steps matter, and if I slip up, I will not give up.

Birdie’s mantra rings in my head so often, and I’m forever grateful. “Focus on progress, not perfection.”

Stay tuned!

Disclosure:
This is a sponsored conversation written by me on behalf of Splenda. The opinions and text are all mine. Comments submitted may be displayed on other websites owned by the sponsoring brand.

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No small change

I pay attention when something sticks in my head. I guess that’s the nature of it sticking in my head, right? It won’t leave me alone until I do something about it.

Last week Kerri posted on Facebook about Meri’s beautiful story called “There is no such thing as small change.” It’s an old blog entry, but it’s one I could read over and over again forever. Talented storytellers tell tales that stand the test of time, and the passion is tangible with Meri and her blog.

It was the title that stuck with me.

There is no such thing as small change.

Even before reading, my brain was filling in – there’s no such thing as a small change in diabetes.

I pictured Meri and her family navigating diabetes over the years. The ebbs and flows, ups and downs, strong, victorious triumphs and weak moments where they’re all just holding it together (we’ve all been there). Then I pictured some external force like an insurance plan or formulary change pushing a “small change” into their diabetes management routine.

Small change, you say?

THERE IS NO SUCH THING AS SMALL CHANGE!

People outside of daily diabetes management don’t seem to understand this. Or maybe they do and don’t care? Or perhaps they do care, but there are things out of their control influencing these decisions? Or maybe it’s wholly financial? Who knows. Things are often way more complicated than what’s evident at surface level.

But no matter the change, it’s disruptive. It causes worry and concern, and we have to be on high alert for negative consequences. Being on high alert takes a lot of energy, and it’s incompatible with the routine of life!

What’s the best case? The change improves the daily routine and gives more time and energy for life.

What’s acceptable? It’d be alright if the change fits right in and doesn’t make things worse. But you have to acknowledge the energy cost of being on high alert until trust is earned.

What’s not acceptable? The change makes things worse, and you have to put life on pause to figure things out again. Can you put life on hold? I can’t. Neither can anyone I know. But that’s what’s it’s like when someone outside of my diabetes makes a decision that fucks my shit up.

Adaptable and resilient

People with diabetes are among the most flexible and resilient people in the world. I could argue that’s a gift from diabetes, but I carry a lot of frustration that we have to be so adaptable and resilient. On the other hand, I’m also ridiculously proud of us. We don’t recognize the strength we have, and I want to do better with that. I wish for all of us to do better with that. We are amazing. Really.

And change can be useful. I’m thankful that I’m not using the same tools and techniques I did years ago.

But it’s a different situation when I choose to make a change, and I decide to explore different options.  I still have to go on high alert and the energy cost is still there, but it’s easier to swallow when the change is on my terms.

But never forget – it still costs energy.

I promise I will always be an advocate for recognizing there is no small change in diabetes and will push everyone I work with to do the same.

The kicker (and spoiler)

My eyes and brain process Meri’s blog title (“No Small Change”) from Kerri’s Facebook post and there’s a strong feeling of resonance. All of the thoughts I just wrote about fly through my head in the split seconds it takes to load the page. And it’s a beautiful story that draws me in from start to finish. No surprise there.

But it’s got nothing to do with what I talked about here. It’s an inspiring piece about, in Meri’s words, “if we all do something little, our little efforts unite into a tidal wave of help. (for IDF’s Life for a Child)” Heh! Not what I was thinking about at all. Worth every second of time I spent reading it and a cause I support. Just an entirely different topic. Hence this post.

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38th Diaversary

Today makes 38 (!!) years of living with type 1 diabetes. While diabetes itself is nothing to celebrate, each year I make a point to acknowledge and celebrate (even if just internally) all of the hard work I do to take good care of myself. It’s never easy, and diabetes is always a lot of effort. But I’m kicking ass and enjoying a magnificently blessed life. Thank you for being a part of my journey!

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Staying hydrated with The Right Cup

Fun brain tricks that help me drink more water

I am trying to drink more water. I’m not abandoning Diet Coke (never that), but I think it’d be a good idea for me to drink more water, too. So when the folks at “The Right Cup™” asked if I’d like to take a look at their cups, I was interested. They sent me two cups to try, one Mixed Berry and one Orange.

Disclosure: I received two “The Right Cup” sample products for review at no charge. The Right Cup had no editorial review or input on this blog post. I will not receive any affiliate benefits or other compensation if you decide to click on any links or give these products a try. 

Two "The Right Cup" products - Mixed Berry and Orange

Co-founder and CEO Isaac Lavi was diagnosed with diabetes at the age of 30 and was searching for a solution to help him replace the flavorful, but sugary, drinks in his life. He found a solution using scent!

The idea behind The Right Cup is to use fruity scents to hack our perception of taste, even when drinking plain water. According to their website, much of our what we taste comes from the sense of smell. The bright colors of the cups, along with the smell, should make water taste slightly flavored even when it’s not.

The cups themselves are bright and beautiful, and they smell delicious!

All flavors of The Right Cup

It was really interesting when I tried them. There was a slight hint of flavor! It was very subtle, and I’m not sure if I would have noticed without being primed for the experience. In their FAQ section, they say the flavor becomes more pronounced with continued use because the brain is learning from each experience.

I’ve been on the road a lot since first trying it, so I can’t say whether that’s true or not. But I do think it’s a little more fun drinking water from these than I expected, and I’ll continue to use them. Time will tell. I also thought it was worth sharing.

You might notice that there is a cola flavored cup available… will I get that one? Nah. When I want some cola, which happens on the regular, I’ll turn to my good friend Diet Coke. I don’t need any mind games to appreciate that experience.

Let me know if you try The Right Cup – I’d love to hear what you think!