The untold story: 49 years of type 1 diabetes

I was up to my neck in health ailments some months ago, I imagine it’s sort of how I must have felt when I donned this pot on my head. When I could no longer stand my health issues, I wrote about them; what creeps up on you after living with type 1 diabetes for 49 years. Excerpt below:

“We who live with T1D all learn pretty quickly (SHOCKER HERE): It’s not about the shots. It is about the 180 decisions per dayTrusted Source medical journals say we make to manage our blood sugar. It is about how this daily decision-making puts our nervous systems into constant hypervigilance. 

It is about fearing the major complications I was told in my hospital bed at age 18 that would befall me: heart attack, kidney disease, amputation, blindness. Scared silly for weeks afterward, I went to sleep opening and closing my eyes, testing what the world would be like if I could no longer see it. Need I tell you I was an art major?”

Full story published on Healthline today, click here. I think it’s an important contribution to annotating the long-term experience of type 1 diabetes.

From TCOYD: All you need to know to manage xtreme blood sugar highs and lows

My favorite “diabetes bad boys,” Dr.s Steven Edelman and Jeremy Pettus, bring us great information about the current state of meds, devices and strategies to help us avoid those spiky highs and horrendous lows. What I love about these two guys is not only are they funny, but they’re honest: two doctors with type 1 diabetes who share their own slips, mess ups and difficulties. Tune in, take notes and enjoy.

A Sanofi-sponsored video to celebrate 100 years of insulin

Last week my 700 square foot city apartment expanded to hold professional video equipment. For two days it become more than our COVID-inspired workspace, gym, movie theatre, restaurant. It became an actual video studio. The photo above is the after-shoot celebration with the husband.

These two black cases arrived from UPS filled to the brim with a camera, tripods, cables, microphone, monitor, laptop, and two ring lights arrived as well in separate boxes. The video was being shot in three locations, the homes of each of us who were in the video, in Boston and Brooklyn.

The video began as an idea for a pop up in a digital anniversary book on insulin. The book is being produced by VPR, the same company through which I participated in the Sanofi-sponsored A1C Champion peer-mentor program for 10 years.

The video will also be shown at the American Diabetes Association’s conference next month, and posted on Sanofi’s website. You may also catch it somewhere else as wider distribution is being discussed among diabetes organizations.

The idea for the video is education and uplift, and the talent was in part chosen because our ages add up to 100, just like the 100th birthday for insulin. Kat and Maddie, who’ve had T1D respectively 12 and 7 years, accompanied me through this video. I leave it to you to guess our ages. 😉

In the video we share our experiences of T1D from our respective ages. In other words, I ask Maddie, today a tween, how it felt hearing she had type 1 diabetes at only six! Kat was curious what advances I’ve seen in diabetes since my diagnosis in 1972, the prehistoric ages. Certainly, those were pre-glucose meter ages; it would take 10 years before I had one.

Pre-shoot: examining the set up. Trust me I did not do the set up, that task was taken on by the “helper” husband. He groaned, but I think it actually appealed to his love of gadgets and photography. Lucky me.

Rolling: and yes, you will only see me from the waist up. When asked about my feelings upon diagnosis, I share what I will never forget: getting T1D at 18 felt like my life was beginning and ending all at the same time. I couldn’t imagine living my whole life with a disease, and taking shots every day.

Of course we all quickly learn that the shots are the least of it. It’s the constant decision-making, the effort to avoid ‘riding the rollercoaster’ and the carrying on through better and worse days. All of which we do.

While Kat and Maddie shared about becoming independent managing their diabetes, I talked about the opposite – learning to become, not dependent, but letting the husband into my diabetes after handling it alone for 30 years. I remember the first time he told me, seeing my CGM blood sugar numbers on his Apple Watch, “You know you’re 63…” “I know,” I said. To which he responded, “Does it bother you that I tell you?” “Not yet,” I said. And we laughed.

That’s a wrap: something Kat, Maddie and I learned was that even though we’re different ages, and have had different experiences, we can still learn from each other. Like the learning that goes on on social media among people with diabetes every day. Not to mention the bonding. It was 22 years after my diagnosis before I met another person with type 1 diabetes. Now I may just have as many friends with diabetes as without.

I will post the video here when it’s available. Meanwhile, I can’t believe how big my apartment is now that it’s only a workspace, gym and restaurant.

Shots in the sun: (How an ice cream cone up-ended my day and blood sugar)

Now that I’m vaccinated and we’re having summer-like days here, I went with a friend to the famed Coney Island that rests along the southern border of Brooklyn. It’s a half hour drive from my apartment –that’s all of 6 miles. Sniffing the air you’re transported into summer: the Atlantic ocean, people sunning themselves on the sand, strollers on the boardwalk. This boardwalk is famed for its terrifying roller coaster, The Cyclone.

But I digress. About twice a year I treat myself to a good ice cream cone. My favorite flavor is old fashioned chocolate chip (that’s vanilla ice cream and chocolate chips.) Runner up: coffee chip or mocha chip. You detect a theme, yes?

Anyway, there in front of us was Coney Cones. Never heard of it, but it boasted gelato and sugar cones. And the cone is the essential – none of those cardboard like cones most places offer, or the huge waffle cones that overwhelm the delicate balance between the smoothness of the ice cream and the crunch of the cone. No, only a sugar cone will do.

Reward in hand, I exited the shop with a kiddie cone (1 generous scoop) of vanilla gelato with pieces of dark chocolate in it. My friend and I sat on a bench right near the shop and I injected my usual dose for such a dessert, 2 units, one unit covers 13-17 grams of carb for me depending on time of day, growing more insulin sensitive as the day progresses.

An hour later, when we got into the car, my Dexcom was letting me know my blood sugar was creeping over 200 mg/dl. Huh? Annoyed, frustrated, fearful, my mind deduced, having taken my shot in the blinding sun, syringe struck into an insulin cartridge, as so often happens there was probably a huge air bubble I had not seen. So, I hadn’t gotten all two units into my body. Or, maybe I didn’t get any insulin at all into the syringe which also sometimes happens.

As I watched my blood sugar climb even further over the next few minutes, I decided to take 1 unit of insulin to curb the rise. Home 45 minutes later, my blood sugar was still rising, now 249 mg/dl. I took another unit of insulin. And 20 minutes later, remembering something I’ve heard from Dr. Steve Edelman, that when your blood sugar is high, (around or over 200 mg/dl) it takes more insulin than normal to bring it down, I added another unit.

Now I possibly had a total of 5 units in my body, had the original two units I took on the boardwalk actually been injected, or anywhere between 3 and 5 units. You will know that this is not a comfortable feeling.

I spent the next four hours as they say, ‘riding the rollercoaster,’ and it wasn’t The Cyclone, but it was just as exhausting and a bit terrifying. Up and down, up and down. I ate seven glucose tablets in all, a spoonful of honey, then began eating crackers and cheese, as my blood sugar went up and down, then up and down again.

I decided to take a walk after the last shot to nudge my blood sugar down, but of course as soon as I walked up my street, my blood sugar began to fall. So I shortened my expected hour walk to 20 minutes and settled in a small vest pocket park. Twenty minutes later my blood sugar was going down from 119 to 109 to 98 mg/dl with the down arrow completely down. Nervous I should just keep descending, I walked SLOWLY home.

What I did right is I made small moves. As Dr. Richard Bernstein says in his ‘law of small numbers’ is that small actions prevent big mistakes. I ate one glucose tab, then watched my numbers on my Dexcom and then took another action. This dance went on for four hours. I finally stabilized at 89 mg/dl. I then took a half unit for my low carb dinner, vegetables and tuna fish salad, and had to slightly up my blood sugar for the last time before bed. I woke up at 115 mg/dl.

There is no perfect with type 1 diabetes. 49 years in this can happen to anyone on any single day. You just have to work with it. I have a tendency to over-react, for instance to take too much insulin to blunt a rise. Insulin is just too slow to match up with, well frankly, anything. But I do believe in the law of small numbers to undertake safer experiments, as living with T1D is one grand experiment.

And, I suppose I have learned the benefit of ignoring the fact that my beautiful gelato is dripping down my hand, and just walk over to some shade to see exactly how much insulin I’m injecting into my body. So perhaps this is a story about mindfulness as we approach lots of shots in the sunshine this coming summer.

Photo below shows half the agony. Just double it for the whole story.

Sugar surfing with Dexcom, sometimes just wait

Above is a screenshot of my Dexcom just a short while ago. Months ago when I’d look at my Dexcom screen I’d only see that arrow going up and think I needed to take more insulin to stop the spike. (Of course depending on how long ago I ate and took my insulin and when the next meal was coming.) But I learned an enormously valuable tip from Dr. Stephen Ponder. Ponder is a beloved pediatric endocrinologist, type 1 himself, and inventor of what he calls ‘sugar surfing.’

Ponder’s book, Sugar Surfing: How to Manage Type 1 Diabetes in a Modern World, gives many guidelines and strategies for managing your blood sugar by watching and evaluating the spikes, and shall we say valleys, you see on your Dexcom – what Ponder calls ‘trendline pattern recognition.’

Here’s the simple tip he gave me that I use: see the arrow, and then look at the last three black dots that represent your blood sugar. Are they going up, leveling out or going down? As you can see the last two dots are leveling out. That means my blood sugar will not be rising much, or for long. The best action then to take is – do nothing.

Sure enough, the screenshot below was five minutes later. Had I taken more insulin my blood sugar would crash within an hour. I know, I’ve done it many, many times in my fierce desire to avoid high blood sugar.

This was a simple case, luckily. Ponder’s book gives you a world of guidance how to read your Dexcom numbers and trends from every angle so that you can be pro-active, to keep your blood sugar in range. As he calls it ‘sugar surfing,’ to ride the waves and stay as stable as possible (on your board).

Of course, as a girl who grew up in New York City, surfing is not exactly my sport, but I’m grateful to anyone who can help me stay on my board.

The Diabetes App, a one stop shop to help you manage your diabetes

This is a guest post from Jazzmine Hale with the company, The Diabetes App. The App was founded by CEO, Sean Zaboroski, last July after watching a loved one struggle after being diagnosed with type 1 diabetes later in life. Zaboroski discovered there was little support to help people take on 24/7 management. He decided himself to develop a platform that could, and would, support people in the diabetes community. The Diabetes App is that platform. 

From Jazzmine:

“These days we keep hearing about the negative effects of social media, but we all know it can be extremely helpful too, particularly when it comes to our health. So I’d like to tell you about The Diabetes App, it’s one app where you have many resources, including the ear of health professionals, to help you manage your life with diabetes. We also have big plans this summer to include the ability to purchase supplies right on the app.

That will be just one of the many services on The Diabetes App. Multiple services in one place, and community, are our two priorities. On The App you’ll find dedicated groups for people with type 1 and type 2 diabetes to connect with each other, as well as groups for loved ones, parents who have diabetes themselves and/or have a child with diabetes. There is also a group where everyone affected by diabetes, all types as well as supporters, can find each other. 

What you will find on The Diabetes App

Here are some of the resources available:

  • Diabetes technology
  • Meal plans & recipes
  • Exercise videos
  • Podcasts
  • Articles & blog posts 
  • Livestreams
  • Health professionals’ guidance
  • Discussions with peers

Health professionals engage with you

The App has physicians, nurses, pharmacists, mental health professionals, diabetes health coaches and educators, fitness trainers and dietitians ready to answer your questions and provide up-to-date information and advice. 

You’ll find them in the “Find A Professional” section of the app or on a livestream. Livestreams occur weekly and are hosted by a health professional or member of the diabetes community.  Livestreams cover topics like, “Ask the Endo,” technology reviews, and fun stuff, like paint night, cooking classes, even makeup tutorials! And if you miss a livestream, you can find it in the livestream archive to watch and re-watch whenever you like. 

How The Diabetes App is different from other apps

The App was designed to simplify the search for resources and support, and to eliminate the need to use multiple apps to manage diabetes. In our dedication to creating community and the sharing of information we encourage users to post a podcast or a blog, or other social media accounts that they find valuable. Users can also directly message any member of The Diabetes App team regarding questions, feedback, or requests for something that you’d like to see added to the app. 

Currently there are 10,000 users and this summer version 2 will be launched as mentioned earlier. It will include an e-commerce feature to allow users to purchase their supplies within the app, and a future update will also include a diet and lifestyle tracker. 

You can access The Diabetes App for free on your phone (available in the Apple App Store and the Google Play Store) or via desktop.  

We know diabetes is a condition where we do better working together. We hope The Diabetes App can be that for you – a platform to make new friends, meet your peers, take advantage of our professionals, and find all the resources and information you need to make your everyday management a little easier, and your triumphs more frequent!”  

Note: In full disclosure, I (riva) don’t use diabetes apps, but you may find it useful for you.

New ‘smart’ insulin pen cap that works with Freestyle Libre 2 CGM

If you use a Freestyle Libre 2 continuous glucose monitor and insulin pens to dose your insulin, you just got good news. Bigfoot Biomedical’s new smart pen cap got FDA approval.

The pen cap fits on most disposable insulin pens and uses glucose data from the Libre CGM to give you insulin dosing recommendations. Bigfoot Biomedical CEO Jeffrey Brewer says the new system is designed to help answer the question: “How much insulin would my doctor recommend I take right now?”

The app the pen runs off also has two hypoglycemia alarms and will alert you to a missed basal dose. Not available for direct purchase users will either get it from their doctor or with a prescription.

Here’s diaTribe’s full article about features and functions.

“How I realized that even the sky is not the limit with Type 1 diabetes”

Kristina Loskarjova (above) sent me an email about her book, Yes, You Can! In it she shares a multitude of stories and strategies from people she interviewed around the world who are living well with type 1 diabetes. Below is a peek into her personal story.

Kristina Loskarjova: “I still remember my 20-year-old self standing on stage and thinking, ‘Is this really what I am destined for?’

I was pitching my start‐up to a jury in a competition in London, and I was experiencing a severe hypo. Back then, while still a student, I was devoting all my efforts to building a start‐up called E77. I was extremely proud of it and had invested all my work and free time into making it a success. I had experienced the side effects of low blood sugar in pressured situations before – in golf and dance competitions, while doing my daily exercise, in school during exams – but it had never occurred to me that it would happen during a truly significant event in my life.

When I finished my presentation, I patiently listened to the feedback I was given, then managed to elegantly (I would like to believe) walk out of the room and rush to my hypo kit. My caring friends kept asking, ‘How did it go?!’ But all I could focus on was getting my blood glucose level up in time. In the end, of course, I didn’t win the competition – but by that point my prize was a steady and safe blood sugar level. 

This was the first time in my life I had truly felt beaten by diabetes. It was the first time I realized that diabetes is not just a convenient excuse that I can childishly use every time I make a mistake on an exam or play a bad golf shot. It could also become an obstacle between myself and my dream life, preventing me from doing things that truly matter to me. 

Nevertheless, I refused to accept that this was the only way it could be, so I devoted time to exploring ways to work with, and not against, my diabetes. I know that I learn best from good examples, so I embarked on a mission to find out how other Type 1 diabetics tackle their blood sugar while performing and excelling in their daily life.

As someone who comes from Hungary, where diabetes is barely discussed, I discovered the inspiring online diabetes community only when I started searching for advice. And I was wowed! Actors, singers, TV presenters, professional sportspeople and those who have no fame– so many role models, so many individuals who could tell me how they managed to handle diabetes while pursuing their goals. And I reached out to them, trying my luck and not quite believing that they would respond to requests from an unknown person like myself. 

But guess what… they did! And their advice was full of stories and life events that reassured me: if they can, I can!

The more individuals got back to me, the more I realized that every story was unique in content yet similar in advice. I immediately started to apply the best practices to my own life. Some of them worked immediately while others took time to master. However, overall, I now find it much easier to give presentations as I know the dos and don’ts that the ‘best of the best’ apply.

Today, every time I’m about to step onto the stage to present, I find a silent space, remember the strong individuals who shared their advice with me and tell myself loudly, ‘Yes, you can!’ I then confidently head onto the stage knowing that I will not find myself in a hypo during this significant moment in my life. 

The more I applied the best practices to my own life, the more confident I became. With time, my diabetes and I became great friends. Today I know – I can! And, in fact, I know that everyone can! 

I wanted to share the advice I had received from professionals, knowing that I couldn’t keep it to myself. I wanted to share it with the wider Type 1 diabetes community. So I classified all the best practices into life events (e.g. careers, activities, nights out, interactions with friends) and turned them into a book called Yes, You Can! This book contains interviews with people from various professions across Australia, Brazil, several European countries (including the UK), Russia and the USA. Among them are champion sportspeople, astronauts, celebrities, actors and everyday individuals who all live happy lives and teach us that even the sky is not the limit with Type 1 diabetes!

The lesson I have learned from this experience is that if you ever doubt yourself – whether due to diabetes or something else – sometimes all it takes to believe in yourself and achieve the life you want is to explore the wider community, find your role models, get inspired and, most importantly, keep on believing that ‘Yes, you can!’”

Note: You can purchase Yes, you can! on Amazon. If you wish to find out more about the book, you can follow @yesyoucan_t1d on Instagram or send an email to Kristina@loskarjova.com.

My note: When Kristina began writing her book at the age of 18, she wanted to inspire those newly diagnosed with T1D to feel anything in life is possible. We also agree that all our situations are unique, so never feel you are a failure if/when your road becomes bumpy. We hope you find ways to achieve your personal best whatever that is, and we know too, in time and often with hindsight, we discover the bumps were exactly what helped us find our way forward.

The TCOYD boys are back Saturday with their enormously fun diabetes show & tell

Yes, endocrinologists Stephen Edelman and his sidekick Jeremy Pittus, bring another virtual day of diabetes education that is as entertaining as it is educational. In all, life-enhancing. It seems these boys are running their educational events about once a month. Very much a silver lining during our pandemic hiatus.

I’ve already learned from these two how to dose if you want to eat three donuts (sort of) and how alcohol affects blood sugar. And both lessons had me howling. Yes, yes, there’s the regular stuff too, but TCOYDs conferences are the only place you’ll actually have fun learning how to deal with your diabetes.

Get all the details and register here. Then join me, I’ll be tuning in too.

A loving note to all our type 3s

When I got my Dexcom CGM, the idea of sharing my numbers wasn’t difficult. I like the idea of someone else looking out for me. But he knew it was an adjustment. So the first time he saw on his watch that I was low, he quickly said, “Your blood sugar’s 63!” Then he paused and added, “Does it bother you that I tell you that?” I paused and said, “Not yet!” We laughed, and frankly no it’s never bothered me, whether he catches it before me, or not.

I took this photo just now while we were chatting. If you look closely you’ll notice a small bright blue something with white letters on it in his pocket. I took this photo because I realized that little something is a plastic container that holds four glucose tablets.

Several years ago, the husband decided whenever we went out that he would carry that container of glucose tablets. He told me, “I know there’s not much I can do to help you, but this is one thing I can do.” When I took this photo I realized that he carries that container around in our small one bedroom apartment too.

Thank you husband. And thank you all our type 3s (loved ones) out there who love and support us. There isn’t a type 3 day that I know of but maybe there should be. Those of us who have them know how lucky we are.