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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!

 

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Footbeat – increase circulation through pressure on the foot

Spendy, a little noisy, but what a concept...

I don’t often do reviews, but I was really intrigued by this concept and product and wanted to learn more. I was sent a demo of the Recovery Kit from Footbeat. It is a product that increases circulation through precise, cyclic pressure on the bottom of the foot.

Animation showing pressure on the bottom of the foot and blood circulation moving up the foot and leg

Precise, cyclic pressure on bottom of foot

Their website features testimonials from people with diabetes who’ve experienced great results with their neuropathy or edema after using Footbeat. I, however, don’t have any diagnosed foot or leg complications nor problems that bother me on a consistent basis. So unfortunately, I can’t say personally whether or not they make a difference in that way.

Breakdown of the components - Mocs, insole, engineI can say that they were relaxing, it felt nice while I wore them, I felt I was doing something good for myself, and my feet/lower legs felt great after wearing them. It was a little strange at first but I got used to them really quickly (maybe even a bit spoiled). The pad of the engine pushes up into the arch of the foot every 35 seconds, holds there for a couple of seconds, then goes back down. It’s almost like a foot massage, but with some science behind it.

Apparently, there is a large venous reservoir and pump in the sole of the foot which moves 25-30 cc of blood every 20 seconds (!!). This pump is activated while walking and can be simulated by active intermittent external pressure. These findings are the origin of those machines you see people wearing in hospitals to stimulate blood flow in their feet and legs to prevent blood clots.

While Footbeat is not labeled or cleared for the same therapeutic use as the big sequential compression devices used in hospitals, they are leveraging the same knowledge to increase circulation through cyclic pressure on the bottom of the foot and argue that they’re achieving the same benefits and results with a different method that is much more mobile and cost-effective. All of the components in the Footbeat Recovery Kit

They are battery operated and charged with the cables you can see above. They connect to the charging ports of the insoles with strong magnets, which I found quick and convenient.

I was hoping for longer battery life between charges –maybe two full sessions – but usually didn’t get more than one.  I spoke to the company about this and like any company using batteries, they are always working to increase run time and decrease size/charge time.

I also found them to be louder than I expected. The motor that pushes the pad up was noisy, and enough to startle me sometimes. I did get used to it eventually, but I think it would be disruptive to people around me if I wore them in a public place like my office or on an airplane. Although considering all of the white-noise on a plane, they probably wouldn’t be noticed. I also spoke to the company about this, and it’s something they’re aware of and working on.

It is a significant investment. You’re looking at $449 via their online store or Amazon. But if you’re experiencing issues and feel that improved circulation might help, it’s hard to put a price on that. With that being said, I also looked at a complete sequential compression kit for sports recovery, and that was $1,495. It’s definitely not apples to apples, but it might add some perspective.

There is also a “Sport” version for the same price. The only difference is the timing of the compression intervals. Please reach out directly to Footbeat if you have questions or would like more information.

Disclosure: I received a demo of the ‘Footbeat Recovery Kit – Health’ to evaluate that I will return. I will NOT receive any commissions or affiliate pay/benefits from any purchases made from any links on this page. Footbeat/AVEX LLC had no editorial input on this content. I enjoyed this product enough that I am considering buying a kit for myself.

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A Bad Case by Erin Spineto

An original comedy series about four friends

Are you an aspiring actor with diabetes? Do you have big dreams of bringing your blood sugar to the big screen? Read on! Erin Spineto has a project that you might be interested in. For more about how it all came to be, here’s Erin.

I was watching a CBS show the other night that had a diabetic character in it. The second it was mentioned, I got so excited.

It wasn’t because I finally was going to see my disease on screen. It gets screen time all the time.

I was excited because I could not wait to see how they screwed it up.

In this particular episode, the diabetic character was a dog. And a dumb dog at that.

He had wandered off and fallen down a fifteen-foot storm drain. When his owner finally finds him, the team of geniuses is already working on saving him. She informs them that the dog has diabetes. The stakes have just been raised.

Being the geniuses that they are, the first question they ask is when was his last insulin shot.

Twelve hours ago. And the music swells. The stakes have just been raised. The dog must be rescued in the next fifteen minutes or he will die.

Wait.

What?

Most likely the dog is running off a long-acting insulin, which means, even if it stopped working exactly twelve hours after injection–which it doesn’t– the poor dog’s blood sugar would slowly begin to climb after twelve hours.

It certainly wouldn’t pass out and die exactly at the twelve-hour mark. The dog could probably survive quite a few days without insulin. Sure, he’d feel pretty crappy, and maybe do a little long-term damage, but he’d recover once he got back on track with his shots.

One more example of how people who are looking for a cool plot twist grab for the diabetes card and throw in their misconceptions of what it means to have diabetes.

I have yet to see a character with diabetes who isn’t a day-player. Who has diabetes, but not because it will make a kidnapping even more dramatic, or being a multi-personality doctor have strange events in the operating room.

To have a group of people on screen who have lives and interests and desires and also diabetes, to see the different ways personalities interact with the management of diabetes, to have the jokes that we can all tell each other finally up on the screen would be incredible.

So instead of just complaining about how “they” just don’t get it or ever do it right, I decided to do better.

A Bad Case… is an original comedy series about four friends. It is not some PC, educational crap about fighting stereotypes and bringing a message of hope and happiness to the world. It is a dark comedy about when diabetes goes all wrong. It is purely for entertainment value and laughs and will be told in six episodes of five to seven minutes each.

I would love to have this series made by people with diabetes. There’s something about being in the trenches together that makes it ok to tell these kinds of jokes. We go through it. Our lives are shaken by it. We are the only ones who can really get away with making fun of ourselves.

If this sounds like something you would love to help make a reality, I am currently looking for a cast and a few select crew positions.

If you have ever wanted to be in front of the camera, or maybe behind it with a cast full of people with diabetes producing the reality of what life is like for us in a seriously funny way, I want to hear from you.

If you have that one friend who is hilarious and you have told them a million times they need to get into a show, I want to hear from you. And them.

If you have zero acting ability and no experience with a camera, but you can hold a pole above your head for a few hours while watching an amazing team put together something that has never been done before, drop me a line.

And if you have been working in Hollywood for years, but haven’t had the pleasure of playing someone with diabetes like you, (yeah, I’m talking to you Derek, Austin, and Jennifer) reach out.

And if your best trait is your ability to sit behind a screen and binge watch shows for hours while Tweeting and Snapchatting and Instagramming all your friends, we need you, too, to get the word out and to enjoy the show. Feel free to drop me a line and tell me you’re out there, too, waiting to see a version of yourself on your phone.

A project like this needs a community to make it happen and I tend to think we have one of the best communities out there. Here’s your chance to prove me right.

For more info on how to join the cast or crew and on the production details, go to SeaPeptide.com/ABadCase

Awesome – thank you, Erin!

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There’s a new diabetes website in town!

Diabetes Strong is a new health and fitness website for people living with diabetes. It’s the place to go if you’re looking for information and advice on everything from exercise and nutrition to the latest diabetes products and tech.

Diabetes Strong was originally created as TheFitBlog in 2015 and is the passion project of Christel Oerum, a fitness professional with type 1 diabetes. It started as a venue for Christel to describe her experience as an active woman living with type 1 diabetes, and share how she manages insulin, food, and exercise.

The website quickly grew into one of the most popular diabetes websites with over 100,000 monthly visitors and was just re-launched as DiabetesStrong.com, an online diabetes magazine with a team of expert contributors.

The mission and design of the website are centered around Christel’s belief that there is nothing you can’t do with diabetes if you have the right knowledge, tools, and mindset. The articles on the site all have a positive “how-to” approach to diabetes and focus on solutions to some of the most common issues faced by people living with diabetes (like how to lose weight when you live with diabetes or how to prevent low blood sugar when exercising).

You can also download Christel’s healthy meal plans or browse the libraries of healthy recipes and workout videos.

All of the information on the website is free to access so you can spend as long as you like reading through the hundreds of diabetes articles.

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Diabetes Emergency Relief Coalition – hurricane support efforts

Coming together to help those in need

Spreading the word about important and reliable hurricane support efforts. Please help get the word out.

Diabetes Coalition Continues to Support Southeast Texas with Critical Diabetes Supplies and Ready to Respond to Hurricane Irma’s Impact in Puerto Rico and Florida

1-800-DIABETES continues extended hours, and new call center activated for physicians and
health care providers to request supplies

ARLINGTON, Va. (September 8, 2017) – Convened by the American Diabetes Association (ADA), a coalition of seven leading diabetes care and research organizations have formed a strong Diabetes Emergency Relief Coalition (DERC) to help provide critical diabetes supplies to regions impacted by Hurricanes Harvey and Irma. Nearly 4,000 pounds of diabetes supplies have been shipped to the southeast Texas region impacted by Hurricane Harvey, and the DERC continues to collaborate to ensure supplies are in place to provide care to those living in shelters or at local health department clinics. In preparation for Hurricane Irma, contacts have already been made in Puerto Rico and Florida, and support in Georgia and South Carolina is in process.

ADA’s Center for Information, 1-800-DIABETES, continues with extended phone hours through the end of next week to assist anyone in need:

  • 8:30 a.m. ET (7:30 a.m. CT) to 10:00 p.m. ET (9:00 p.m. CT), Monday through Friday, through Friday, September 15; and
  • 10:00 a.m. ET (9:00 a.m. CT) to 4:00 p.m. ET (3:00 p.m. CT) on Saturday and Sunday, September 9 and 10.

Given the expanding needs of Hurricane Irma and the continuing needs of the Southeast Texas region, the Coalition has activated a new call center for physicians and health care providers to request diabetes supplies: 1-314-INSULIN. The supply request line will be open and staffed daily by members of the DERC beginning Friday, September 8, from 9:00 a.m. ET to 6:00 p.m. ET.

Please check diabetes.org/hurricanerelief for the latest information.

Information and resources include specific support in Texas, Florida and Puerto Rico, in addition to these:

During an emergency crisis such as this, it is critical for people with diabetes to have access to the medications and testing supplies needed to maintain proper blood glucose control, and to prevent serious sudden complications such as hypoglycemia or hyperglycemia1. Visit diabetes.org/hurricanerelief for the latest information.

The Diabetes Emergency Relief Coalition, convened by the American Diabetes Association, includes JDRF, Insulin for Life USA, Endocrine Society, American Association of Clinical Endocrinologists, American Association of Diabetes Educators and Research America. For more information about the Coalition, click here.

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1 W Cefalu et. al. The Hurricane Katrina Aftermath and Its Impact on Diabetes Care. Diabetes Care 29:1, 158-160. http://care.diabetesjournals.org/content/29/1/158.

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The power of me too and “There’s More to the Story” by Mindy Bartleson

I’ve asked Mindy to share more about her upcoming book. With great pleasure, here she is with some of her story and more details about how you can connect with her. Thank you, Mindy, you’re wonderful!

I’ve greatly benefitted from the power of me too when it comes to diabetes. When other things popped up in my life, I wasn’t able to (and sometimes wasn’t ready) to apply this beneficial power.

When my dad passed away when I was 12, I didn’t know a lot of people who understood what it was like until I got older and found more people. I also wouldn’t talk about. I had to be strong.

When I was struggling with mental health, I not only kept these feelings to myself until I was in college, I flat out denied them to myself.

I grew up having issues with my period, but I didn’t talk about them because I grew up with the notion that you kept that to yourself.

One thing that changed how I looked at these things? Being honest and open about them. In college, I changed how I looked at all of these things- including diabetes and life.

After diabetes burnout in college, I started posting more about the good and the bad of diabetes and mental health, but of course other things- of course- life.

When I was diagnosed with PCOS and endometriosis, I posted about it online.

That’s when I started hearing or seeing the me too’s. The relief of knowing I’m not alone made a huge difference in my life.

Over the years, I’ve adjusted my blog.. I wanted to talk about everything in my life- the type 1 diabetes, PCOS, endometriosis, anxiety, OCD, ADHD, (other diagnoses), loss, and more- because like the title of my blog says- “There’s More to the Story”. I wanted to talk about it honestly- the good and the bad. It’s hard to imagine that I never even wanted to write a blog- but here I am now!

About two years ago, I realized that I was applying rose-colored glasses to a lot of things in my life already at the age of 22. I was starting to say that all the bad things were worth it or completely ignoring them. I firmly believe that yes I can do it. That I (and others) can get through things. But I want to acknowledge that it can suck. That’s what life is. It’s what I needed to do.

Between the decision to be honest about the positive and the negative and realizing that rose-colored glasses were starting to impact how I looked at things. I decided to write a book about chronic illness and mental health. I’m aiming to balance the positive and the negative together on growing up in general but also with chronic illness and mental health along for the ride.

I’m pursuing self-publishing, and I’m utilizing crowdfunding to make this happen.

Mindy is self-publishing an honest book about growing up with chronic illness and mental health. She wrote the content before rose colored glasses impacted her experiences too much. To help this book get published, you can visit the crowdfunding page to learn more, back her project, and help spread the word. You can also follow Mindy on Instagram, Twitter, Facebook, and her blog “There’s More to the Story”.