Author Archives: StephenS

Hello… I’m Stephen. I live in Baltimore, Maryland, USA with The Great Spousal Unit, Maureen. I’ve been living with Type 1 Diabetes since January 1991. I’ve been a pump user since April 2010, and I’m currently wearing the Animas Vibe pump. Also wearing the Dexcom G5 continuous glucose monitor.

I found the Diabetes Online Community in the summer/fall of 2011, and that discovery has changed my life. I started this blog in April 2012, and since then, my diabetes advocacy has continued to grow. Among other achievements, I’ve attended and spoken up at FDA workshops and participated in clinical trials.

I’ve been thrilled to serve as a facilitator for the Diabetes UnConference. And I’ve been honored to volunteer for Diabetes Patient Advocacy Coalition. You should Google both of those.

I’m currently serving as a member of the State of Maryland’s Advisory Council on Health and Wellness, where I am co-chair of the Diabetes committee. In addition, I’m part of the 2018 Reader Panel at Diabetes Forecast magazine.

I’m always searching for the perfect balance between the highs and lows of my blood glucose level and my life… always searching for the Happy Medium.

Anything you’d like to share? Please let me know… I’d love to hear from you.

Please share your thoughts: #IWishPeopleKnewThatDiabetes

April 22, 2015 – 10:39 am

Denver teacher Kyle Schwartz started this wonderful #IWishMyTeacherKnew initiative, in which she asks her students to write down on a post-it note what it is that they wish their teacher knew. The story is inspirational and uplifting, and reading about it brings tears to your eyes sometimes, and it’s been all over the news lately. HERE is an example, courtesy of CNN.

Kelly Kunik and I both saw this story at around the same time, both of us had similar ideas, but she beat me to the punch in designating today as #IWishPeopleKnewThatDiabetes day. Because she’s just awesome that way.

Look for my takes on this below. Look for additional brain spewing and general thoughts on this meme throughout the day on all social media. And tonight’s DSMA chat is all about #IWishPeopleKnewThatDiabetes… the Good, the Bad, and the Ugly. Join us at 9:00 ET in the USA by following @DiabetesSocMed and the #DSMA and #IWishPeopleKnewThatDiabetes hashtags.

Here we go:

#IWishPeopleKnewThatDiabetes sometimes causes high BGs in the mornings that are a pain in the ass to deal with. But… #gameface

#IWishPeopleKnewThatDiabetes is not equatable or equitable to anything else. Even to yesterday. It’s day-to-day, monitor it all the time, never gonna get a vacation from it.

#IWishPeopleKnewThatDiabetes looks normal, and even manageable, from behind the face of this blog; but in reality, I deal with the same problems, the same headaches, the same highs and lows, that everyone else living with this disease deals with. You are not alone, dear reader.

#IWishPeopleKnewThatDiabetes makes me work harder than my co-workers will ever know.

#IWishPeopleKnewThatDiabetes has caused me to experience near-death hypoglycemic low blood sugar battles at work, at home, in the grocery store, during workouts at the gym, on vacation in multiple countries, and just about anywhere else in my 24 years with diabetes. It has sapped my energy and killed brain cells and while I try, I can’t be guaranteed to not experience another one today. Or tomorrow.

#IWishPeopleKnewThatDiabetes makes me want to simultaneously invest large (to me) sums of money in and kick the teeth out of insurance companies that make life and death decisions for me and my friends based on nothing other than “delivering increasing returns to shareholders this quarter”.

While we’re at it, #IWishPeopleKnewThatDiabetes is making people who already can buy or sell anything they ever wanted increasingly richer, while making other people increasingly have to choose between food for their families, keeping the lights on at home, and paying the mortgage; or buying the drugs and devices that will keep themselves or their loved ones alive on the other. On a monthly basis.

#IWishPeopleKnewThatDiabetes made me one of those people who once had to choose between food, keeping the lights on at home, and paying the rent; or buying drugs, DME, or going to the doctor when I needed it. On a weekly basis.

#IWishPeopleKnewThatDiabetes has blessed me with not only a faulty pancreas, but also the kind of daily resilience that some can only dream of. And empathy that, unfortunately, some others will never understand. That will not keep me from trying to help them understand and empathize with the daily resilience that me and all of my brothers and sisters with faulty pancreases possess.

and…

#IWishPeopleKnewThatDiabetes has connected me with so many people living with and affected by diabetes through daily interactions, Twitter exchanges, blogs, Facebook, healthcare professionals, the scientific community, and as yet unknown additional outlets that inspire, empower, and I know, will eventually overwhelm the bejesus out of this stupid, effing, disease.

If you’d like to add more, join us tonight… and by all means, leave a couple of things #IWishPeopleKnewThatDiabetes below.
 
 
 

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#HealtheVoices15: We are not alone.

April 21, 2015 – 9:37 am

April 17 through April 19, I attended the HealtheVoices Conference in Jersey City, New Jersey. Janssen Pharmaceuticals paid for my train travel, hotel, and meals so I could take part in this gathering. In case you’re wondering, all opinions expressed here, or using the #HealtheVoices15 hashtag are entirely my own.
HealtheVoicesConference
I spent last weekend at something called the HealtheVoices conference in Jersey City. Unlike all of the diabetes conferences I’ve attended in the past three years, this conference brought in people living with a host of different chronic conditions.

And you know what? I discovered we are not alone.

Okay… sure… I knew that People With Diabetes are not the only ones living with a chronic condition. But when you get immersed in a cause, after a while, you tend to forget about the others who are out there working on different causes, lifting up others living with a different disease. One of the really cool things about this weekend was the opportunity to see and hear from people living with and advocating for those living with Chron’s disease, HIV, Rheumatoid Arthritis, Cardiovascular issues, Breast Cancer, Prostate Cancer, and so much more.

The presentations were well thought out and well presented. I liked learning how people are making a mark in their own patient communities. There were also presentations where we learned about the legal ins and outs of writing a blog, how to take an idea and get it funded, and the importance of telling our stories online and engaging with others to create a better community.

And just like the diabetes conferences, there was real value in the one-to-one, peer-to-peer conversations that happened over breakfast, lunch, dinner, and between sessions. Some of the best ideas I heard, and some of the most inspiring things I witnessed, came in those quiet moments where someone was able to share what they’ve experienced and what they’ve learned with a bigger audience. I got to watch groups from other conditions gather and share and laugh together, just like PWDs do. I found that the power of “me too” isn’t exclusive to diabetes.

So by now, you may be asking: What about the diabetes people in attendance? Well, let me tell you… the diabetes team absolutely rocked it this weekend.
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Cherise, Karen, Kim, and also Christel and Kerri (who also presented and was on the advisory panel for this conference) were sponges who spent equal time gathering information, listening to others, and sharing their stories and tips with others. They were tweeting like crazy and asking questions and engaging in conversation. One of the other things I learned about this weekend is that we’ve accomplished an awful lot all on our own.

I should also take a moment to thank the people at Janssen who gave up their weekend for this event. Thanks especially to Rachel Yurchak and Caroline Pavis, and to the people whose last names I don’t remember, like Stephanie and Beth. You made us all feel welcomed and important.

I’d like to think I’ve met a few people that I’m proud to say are friends now. I’d also like to think that I’ve found a few new things to aid me in my advocacy efforts.

Listen… My diabetes community bubble is good. It helps me when I’m down, it inspires me to perform advocacy, it has changed my life in a positive way forever. The great thing about the HealtheVoices Conference was that I could see, and learn from, additional communities that are doing the same thing, with people who are just as inspiring, and who encourage me to do better and be better. I will never forget their stories.
 
 
 

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Heading out again.

April 17, 2015 – 8:46 am

As the sun begins to break through again (thank you rain, but thank you sun!), I’m all packed and ready to head off to something called the HealtheVoices conference in Jersey City… wait for it… New Jersey.  It’s just across the Hudson river from Manhattan.

This is not just a diabetes conference– there will be a number of online patient advocates in attendance who are dealing with a myriad of medical conditions, including HIV, breast cancer, cardiovascular issues, Chron’s/colitis, and many others.  I’m very interested in getting ideas and perspective from people living with and affected by conditions that are not my own.

The conference has been put together by Janssen Pharmaceuticals, which, among other things, produces the Type 2 medication Invokana.

This is where I tell you that Janssen Pharmaceuticals is paying for my train travel, hotel, and meals so I can take part in this gathering.  In case you’re wondering, all opinions expressed here, or using the #HealtheVoices15 hashtag are entirely my own.

This is the first time a company has invited me, at their expense, to attend a conference.  Guess I should think about creating that disclosures page now.

If I can, I’ll let you know what’s happening when it’s happening. Otherwise, I’ll try to give you a recap later on.

I hope your weekend is off to a great start, and I hope the nasty weather stays away from your part of the world too. Talk to you Monday!
 
 
 

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Veg Report: Watcha growin’ this year, Stephen?

April 15, 2015 – 9:14 am

Weeellll, how nice of you to ask!

I did get my veggies in the ground this past weekend. For some around here, that’s a bit early; we sometimes get frost as late as May. But I’m hoping the really cold weather is behind us, and even if it isn’t, I’ll find a way to keep the frost away from my tender plants.

I’ve grown vegetables for twenty-something years now, and this is the eighteenth year I’ve been growing them in the same place: same yard, same spot. I rotate where I plant what about every other year, but other than that, this spot works well. Lots and lots of sun. We’ve also got a separate herb garden (where we also grow strawberries), but that’s not worth showing right now, especially since the strawberries are threatening to overrun the joint.

For the vegetable garden, here’s the layout:
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Over there on the right are the greens: Romaine lettuce in the front, and red leaf lettuce in the back. In about five weeks, I’ll have more fresh salad makings than I’ll know what to do with. And I like that.

A little to the left of the romaine is radicchio. Radicchio is a little peppery, and it’s a good compliment in a salad to something a little milder, like romaine or iceberg lettuce. Plus, it’s great in alternative dishes like a carrot salad.

Moving left, you’ll see a decent sized open space. This is where I’ve grown green beans in years past. I don’t know if I’m going to do green beans again this year. I still have some in the freezer from last year’s garden. Instead, I think I’ll drop a couple potatoes in there and see what they can do. I’ve had some success with potatoes in the past, and they’re about the easiest thing to grow. Just save a couple of your favorite potatoes (mine are red skin potatoes) from the store until they start sprouting, then plant them. After a couple of months, reach your hand down in the soil near where you planted them, and see if anything is there. Doesn’t take much more than that.

Moving left past the bare space, you’ll see a very small yellow squash plant. This is supposed to grow those small, straight, yellow squashes that are great for a number of things. But my experience tells me that when plants get enough water, they’re usually straight, and when they’re dehydrated, they get a little misshapen. Kinda like me.

Next to the squash are three pepper plants. One is a “lunchbox” pepper, which is supposed to produce little yellow and orange sweet peppers. I’m hoping they produce, but I haven’t grown this one before, so whatever happens, happens. The other two are my favorites: poblano peppers, which are sort of smoky and are great in almost anything.

In the back are our three tomato plants. These are all heirloom tomatoes. According to Wikipedia, “an heirloom tomato (also called heritage tomato in the UK) is an open-pollinated (non-hybrid) heirloom cultivar of tomato”.

From right to left, there’s a cherry tomato plant, that was extremely prolific last year. In the middle is my favorite tomato, the Mr. Stripey. It grows orange, with little yellow stripes, and it is delicious. The other one is a Cherokee Purple, which, once it ripens, is pretty much how it sounds.

I’ve also got an extra planter with arugula and additional radicchio, because I bought too many plants.
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There’s no real point in sharing all of this with you, except to keep a record of what I’m growing, and to tell you how exciting it is to plant something, care for it, watch it grow, and harvest it months later.

Taking care of my veggie garden never gets old. What are you growing this year?
 
 
 

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A new Champion Athlete With Diabetes! Betsy Ray.

April 12, 2015 – 10:27 pm

I’m always shocked at how people who are doing amazing things in the diabetes community write me about their athletic achievements, and then wonder if they really have done enough to earn a Champion Athlete With Diabetes medal.
Champion-Athletes-With-Diabetes-Medal

One of those people is Betsy Ray. Betsy is already founder and CEO of a group called Diabetes Activist. Diabetes Activist is all about supporting People With Diabetes, helping them toward a healthier, happier future while living with this chronic condition. They include a number of voices in the continuing dialogue of what works best for People With Diabetes, and they work to improve the outward message of People With Diabetes by educating and helping others toward a great understanding. Want to read her story? Click HERE.

That’s enough for me… but that’s not all.

Betsy is 52 years old, and she’s been living with diabetes for 50 years! She’s also got a daughter who’s been living with Type 1 Diabetes for the last 16 plus years, who is performing athletic wonders too.

Still not enough for you? How about this?

She rode in the Colorado Tour De Cure on August 14, 2014 and before that she did the Triple Bypass. The Triple Bypass is a 125 mile ride in Colorado that crosses three mountains with peaks above 10,000 feet. She turned in an awesome ride in the event, even though she had to get assistance due to snow(!) at the top of one of the passes.

Yet Betsy still felt the need to ask me: Am I eligible for a medal?

Are you kidding me? Eligible doesn’t even begin to cover it.

Oh yeah… Betsy Ray sounds like a Champion Athlete to me. She is exactly the type of athlete that inspires others to keep trying, and keep seeking their athletic dreams. Way to go Betsy!

So… the weather is warming up. Are you thinking about running that race, riding that ride, doing that swim, participating in that competition? I would love to hear about it! As always, I encourage you to click here, find out more, and send me an e-mail today.
 
 
 

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