Category Archives: Support

I Hear You

August 1, 2019 – 10:11 am

Many things about living with diabetes can be difficult. One of the hardest things is when we start to feel alone in our walk with this condition.

It can be when we’re at our best, when we’ve had a good day and we post something about our blood sugar playing nice. On those days, maybe we just want to ask, “Will it last?”.

Other days, nothing seems to go right, and we need a place to share our frustrations and our deepest fears.

As part of her Doctorate research, The Chronic Scholar, Heather Walker convened an action group that came away with a campaign to promote listening and support among those living with and affected by diabetes. We’re rolling it out as a group today, August 1st, using the hashtag #IHearYou.

I hope you’ll join us as we stop and take the time, first to listen, and then say, #IHearYou.

What are we trying to do with this? It’s an affirmation of what the Diabetes Online Community has been doing so well for so long.

You are not alone. Every day is not perfect, or even like any other, and it’s okay to reach out for support when you need it. It’s important that all of us recognize your contributions.

In fact, there’s an entire community made up of people with diabetes, our loved ones, health care professionals, researchers, non-profits, writers and podcasters and many others who believe in the power of sharing your story, free from judgement and stigma, with absolutely no conditions.

Yet I’ve been guilty of it myself sometimes. I keep going, with my nose to the grindstone, grinding along, and suddenly I realize I haven’t been listening the way I should.

This campaign is about that too. Taking the time to listen and acknowledge, as much as possible, everyone’s successes and triumphs, as well as your fears and frustrations.

I hope you’ll join me and the rest of the DOC and reply using the hashtag #IHearYou when someone in the community posts something meaningful, or even when someone just reaches out to you one on one to share something personal.

It’s about spreading the support and recognition that each of us works hard every day to live our best lives, with diabetes along for the ride.

We all need a safe place to share what we’re going through. We need a sounding board. We need an ear to listen. More than ever, I’m here to say to you: #IHearYou
 
 
Special thanks to Heather Walker for including me in her action group, which also included the late, great, one and only Kim Hislop
and

Bea Sparks
Kerri Sparling
Karen Graffeo

Christopher Snider
Mike Lawson
and
Bill Woods

By StephenS | Tagged , | Comments (8)

My best moment from #AADE18 didn’t happen at AADE

August 23, 2018 – 10:11 am

I told this story a couple of times this past weekend at AADE, and I thought it might be worth retelling here. It involves a memory from many years ago, and reacquaintance. In short:

The best story of my AADE experience did not happen at AADE.

The annual meeting of the American Association of Diabetes Educators was at the Baltimore Convention Center, in the heart of the city where I live and work. In fact, until about nine years ago, I used to work very close to the convention center.

Back then, I used to go through a building across the street from where I worked, directly across the street from the convention center, every morning on my way in to the office (I actually had an office then). The building had a newsstand in it, and still does.

Running the newsstand was a diminutive woman who was generally nice, but when the moment called for it, could be salty as hell. You didn’t want to get on her bad side.

Now, let’s flash back 15 or 16 years… when I was 11 or 12 years into diabetes… but before insulin pumps, CGMs, and way before I found the Diabetes Online Community. We’re talking Friday morning, in the spring or summer of 2002 or 2003.

I’m headed into work that morning, and I could feel that my blood sugar was crashing. I got off the subway and somehow navigated the block and a half to get to the newsstand. By the time I got there, I was sweating through everything, including the suit I was wearing. I must have looked awful.

I can remember there must have been a large lottery jackpot coming up or something, because there were more people than usual in the shop, and I had trouble getting to the back to get some juice. Eventually, I just slumped on the floor, unable to move any more.

People were looking at me like I was drunk, or under the influence of drugs. I’ve had a couple of moments like this in the city, where passersby shoot cell phone videos instead of stopping to assist you. If things go really bad, they might call the police, who might cart you off to the city lockup, and people around here know if you go into the lockup on Friday, you’re probably not coming out until at least Monday.

So here I am, unable to move in a newsstand full of people. And suddenly, this diminutive woman races out from behind her counter, leaving her lottery customers waiting and looking at their watches. “What do you need?”… “How can I help you?”.

I think I just muttered “juice”, and she raced back and got me a bottle of juice, which I finished in no time. Then she got another. I was about halfway through with that before I started coming out of my funk and she went back to her customers. She never charged me for the juice.

I took an extended break from work the next day to go over and pay her, thank her, and discuss the moment. We didn’t speak about it again.

Eventually, my company moved its offices about five minutes away. That was 2009, nine years ago. Not working close by anymore, I didn’t return to the newsstand.

Fast forward to last Friday. I took the subway for part of my commute to get to the convention center that day, and I really wanted a soda, and since that building is right across the street…

I walked into the newsstand, and she was not there. The only people in the place were what looked like a couple of regular lottery customers, who, as I recall, used to watch the place for my hero when she needed to step out for a minute. We waited and chatted together.

Then suddenly, she walked through the door, and as soon as she saw me, her eyes got big and she shouted “How are you?”! I flatly retorted, “I can’t believe you still remember me”. She said, “Oh, you never forget a day like that”.

I told her I was on my way to the convention center, why I was there, and that later in the day, I would be speaking about life with diabetes as part of a discussion panel at the conference. I took the time to remind her that if it wasn’t for her help all those years ago, I might not be speaking that day or any other.

I can’t stop thinking about the impact of that moment in time.

So my best story about AADE did not happen at AADE. It happened years ago, and was relived for a brief moment last Friday. As long as I live, I will never forget that day, this person’s selflessness, and the unknown opportunities it would present much later on.

By StephenS | Tagged , , | Comments (6)

Encountered by Diabetes In The Wild.

September 25, 2017 – 10:12 am

I love to read stories from friends who encounter others living with diabetes in the course of their everyday lives. Those Diabetes In The Wild stories are always interesting.

But I almost never, ever encounter diabetes in the wild myself. The times when I have encountered someone else living with diabetes have indeed been few and far between. But twice in the span of just one week, I’ve actually been the subject of someone else’s Diabetes In The Wild stories.

The first time was at my post-op visit with the surgeon who removed my appendix. At the office, I went back to get weighed and get vital signs with an assistant, who almost immediately asked “Is that an Animas Vibe insulin pump clipped to your pocket?”. I was astonished that she knew, until she mentioned that both she and her husband have been pump users in the past (her husband still is, but she is now MDI).

We talked briefly about the Medtronic 670g, and about the Abbott Libre, which will hopefully be approved by the U.S. FDA soon. I mentioned my participation in clinical trials.

The second encounter was from a technician at our Veterinarian’s office last Thursday. We were in to get Boomer a booster on one of his vaccinations. She saw the ONE—–>NONE T-shirt I was wearing, and blurted out, “I just have to ask– One to None— is that about Type 1 diabetes?”. Thanks Alecia, for the one piece of clothing that may be, above any other, a diabetes conversation starter.

The vet tech’s son is nine years old, and has been living with Type 1 for a few years. She couldn’t imagine what it will take for her son to live with diabetes for 26 years like I have. You know how you survive 26 years? One day at a time. Her son has the Vibe pump, and the Dexcom G4. She raved about Dexcom and their customer support, as did I. Later, we got her e-mail address and I sent her information about the upcoming Friends for Life Falls Church event. You can never have too many diabetes friends.

The connecting theme from these two encounters is easy to understand: there are, in fact, tens of millions of us living with diabetes in this country. Yet living with diabetes can be a lonely existence. Tens of millions of us living with diabetes, hundreds of millions of us who are clueless about what it takes to live every day with this disease.

That’s what makes that moment of recognition, that instant bond, so special. It’s not necessary for us to have friends living with diabetes, or have people in our lives who understand. But when we do, it makes all of the 3:00 a.m. glucose checks, the bad pump sites, the constant doctor visits, and the fights with insurance companies easier pills to swallow, to borrow a metaphor.

I may still have diabetes… but I have new friends who understand me, and new friends who can count on me to understand. Me too? Priceless.

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Off to college with CDN!

April 13, 2017 – 9:22 am

One of the most impressive developments in the diabetes community in the last several years has been creation of the College Diabetes Network. As of this writing, CDN has established chapters that support students living with diabetes at 112 colleges and universities.

Their website is a treasure trove of information, on everything from preparing for college, to life on campus, to relationships, to student’s rights, and more. If I’m living with diabetes in the USA, and I’m going to college soon, I want to become a CDN member.

And if you are that person, or one of your kids is a young adult who will be transitioning to college campus life soon, there are a couple of really great resources available right now.

College Diabetes Network has produced booklets for students and parents that are designed to help them through the changeover from high school to university. These booklets are great for wrapping your head around everything you need to consider ahead of time. If you’re like me, there are probably a few items in there that you haven’t thought of yet.

But that’s no problem… because you can get your hands on the student guide or the parent’s guide (or both), absolutely free. Put together in part through a grant from Eli Lilly & Company (thank you insulin maker!), you’re going to want to have these in your hands, whether you’re headed to a campus with a CDN chapter or not.

CLICK HERE to go to the CDN website, where you’ll get a preview of the guides and a chance to request one of your own.

So to review: free guide full of useful information to help you begin life at college while living with diabetes. Sounds like a winner to me. To get all of the information, and to find out more about College Diabetes Network, CLICK HERE. Good luck!

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All about the support.

June 1, 2015 – 9:10 am

As you probably know by now, I really like to support my fellow Friends With Diabetes. That’s especially true when someone is bravely starting something new, and looking to make their mark.

Enter Pumpstash.

Actually, let me first tell you about Corinne Logan. Corinne has been living with Type 1 Diabetes for 18 years. She’s been wearing an insulin pump for 14 of those years. Right now, she’s a sophomore at Fordham University in New York.

Her biggest problem in the last few years has been what to do with her pump. Especially when she’s competing and exercising (Corinne played lacrosse and soccer in high school), wearing spandex shorts and trying to figure out where to stash her pump has been a tall order.

Her mom came up with the idea of creating pockets in the shorts, so there would be a place to put pumps or CGM receivers. That’s what gave Corinne the idea to start Pumpstash. The idea is so simple, yet so necessary: Create something that has built-in pockets to help you store your pump and other necessary items.
Pumpstash1

Pumpstash2

Corinne is starting to get the ball rolling on her project. In fact, she’s in the middle of a Kickstarter campaign that has a little over two weeks left. Check the video, and you’ll see what it’s all about. Here’s the deal: Corinne needs $5,000 to get this thing off the ground (she’s already raised over 3,000 dollars). Once she’s secured the five thousand, she can go into production on the shorts and start offering them to customers.

The best part is, once she starts selling them, she’ll be donating 10 percent of all her proceeds to JDRF.

So… you get to help a student with an idea get that idea off the ground. And once it does, JDRF, and by extension, all of us, get to benefit too.

Hey, this is not that elusive cure we’ve been waiting for. But I am so inspired by people who aren’t just sitting around doing nothing. Here’s someone with diabetes, with a worthy idea that’s worth our support. So go visit Corinne’s Kickstarter page and help someone with their dream. And…

Good luck Corinne!
 
 
 

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