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.

Update

It’s been a while since I’ve mentioned my experiences on my state’s Advisory Council on Health and Wellness. Here’s a quick update after a flurry of meetings, including our latest quarterly full council meeting:

I’m finally getting used to our quarterly full council and Diabetes Committee meetings. It takes some preparation, but also preparation at the right time, so I, along with my more-than-capable co-chair of the Diabetes Committee, can present the latest and greatest on what the committee is working on, but also explain why we’re working on what we’re working on.

As far as committee meetings go… that’s required even more involvement. Instead of the quarterly meetings we’re required to hold, we’ve committed to monthly meetings since beginning the ardent task of framing the state’s first comprehensive diabetes action plan.

The work is ongoing, but I’m finally starting to feel like we’re making progress, and that’s good. Hopefully, I’ll have more to tell as we start to pull the various parts of all this together.

I should mention that we’re all indebted to the various staffers at the Maryland Department of Health who have been working with us during this time. They have provided guidance, data when we need it, and a lot of patience as we navigate this process. This is their job, but they’re doing it at times that are not always normal office hours, and I admire their dedication.

One other part of my council duties that I probably haven’t mentioned before is my role as part of an ad hoc legislative committee. Our council is comprised of four committees (Diabetes, Heart Health, Arthritis, and Physical Fitness), and we each chose a representative for the legislative committee.

Maryland’s legislative session runs only from January until April. When bills were introduced in the House or Senate, if the Department of Health saw a potential role for the Advisory Council to weigh in with either support or opposition to a bill, it was sent to our committee for review. In very short order (usually 72 hours or less), we needed to read the bill, decide whether to support, oppose, or take no position on a bill, with written reasons that support our point of view.

One such piece of legislation was Senate Bill 410, which, among other things, would have eliminated co-pays for insulin and test strips for Marylanders insured under anything other than a high deductible insurance plan. Naturally, since people on HDHPs are the most negatively affected by climbing co-pays, it was unfortunate that they were left out of the bill.

But, it would have been a huge win for everyone else, so the council was overwhelmingly in support of it. I was even able to add some of the wording and data for our letter in support of the legislation, which may have been my proudest moment serving on the council so far.

Unfortunately, the bill didn’t make it from the Senate over to the House, and the bill is dead for this year. If it comes up again next year, I hope we can get it through to passage. Overall though, my work on the legislative committee has been instructive and fulfilling.

Finally, I want to remind anyone from my state that our council and committee meetings operate under laws that ensure that we have a free and open process while we perform our duties. You probably would think that attending a meeting would be boring, but you are welcome to attend. For the record, the next full meeting of the Maryland Advisory Council on Health and Wellness is on July 17 at 4:00 p.m. If you want to know more, just ask me.

And if you have an interest in something like this… if you want to serve others, be part of something bigger than yourself, then go for it. There’s nothing that qualifies me for this role, other than the fact that I’m a passionate advocate and I have a little experience with this sort of thing.

You likely have the same qualities, or even better ones. Your community could benefit from your interests, and your perspective. Service to the community is noble and important. As I’ve asked so many times here… Why not you?

Have Some Fun

I came home from work the other night, walked the dog (like you do)… then, I went into the kitchen to see what I could do about dinner.

I should mention that I was finishing up a bad infusion site, and my blood sugar was over 200 mg/dL most of the day. In fact, I had skipped lunch because I couldn’t bring my number down and I didn’t want to go even higher. I was hungry. First, I performed the site change, and then I opened up the fridge.

I needed something that would fill me up, but not affect my blood sugar too much while I got the BGs sorted out.

I had part of a steak leftover from a couple of days earlier. And a brand new head of iceberg lettuce. I usually prefer romaine, or spinach, or just about anything other than iceberg, but there it was.

And suddenly, I thought: maybe I could try to make a wedge salad like the ones that became so popular about ten years ago. To be honest, whenever I think of a wedge salad, I think “easy salad”… how hard can a salad be if you don’t even chop the lettuce? Well, it really is that easy. Finally, I’m right about something.

I added green onion, a little shredded broccoli/carrot mixture, chopped walnut, and tomato. On top of that, the leftover steak and some feta cheese. A little crushed black pepper and greek salad dressing, and I was ready to go.

It was delicious.

Hey look, making a wedge salad is about as easy as it gets in the kitchen. The point isn’t that I did some chefy thing. The point is that I had fun doing it.

I took a ridiculously boring idea (salad) and enjoyed the idea of crafting something that I hadn’t tried before. It was easy, but it wasn’t boring.

That’s the point of cooking for me: use what you have, make it as well as you can, and enjoy the process. You’ll usually come up with something that’s good for you, is lower in calories, and is pleasant to your CGM trend line.

Do something in the kitchen you’ve never done. Have some fun. I guarantee you will love the process.

What else can I do?

This is more than just a photo of my dog. This is from the home screen of my mobile phone.

That part in the middle of the screen, where you now see – – –, you would usually see a number from my continuous glucose monitor. When I took this screenshot, I had no number. About fifteen minutes later, the number was back.

There are a lot of reasons why I wouldn’t get a number from my Dexcom for a short time. The biggest reason this was happening last week is because I was wearing my sensor longer than I’ve ever worn one before. The reason for that is because I forgot to order new sensors in time to have a fresh supply when the one I was wearing gave out.

Brilliant, right? The thing is, sensor ordering isn’t one of those fun, sexy things you get to do when you live with diabetes. The real secret is, there aren’t any fun, sexy things you get to do when you live with diabetes, but you get to do a lot. Actually, you have to do a lot just to have the best life possible.

That includes ordering sensors on time. But you know, ordering sensors is just one thing. I also have three doctor visits I need to schedule, a full time job outside of diabetes, a few advocacy subjects to stay on top of, a new dog, insulin and reservoirs and infusion sets to order too.

The next time you hear someone talk about the burden of living with diabetes, try to hear it differently. The emphasis should be on living with diabetes. And it’s no walk in the park.

But… the sensors still needed to be ordered. In fact, they were ordered last week. It has been processed, and I asked for expedited shipping, because I love paying for my mistakes by paying extra to get my supplies in a hurry (not).

Someone not living with a chronic condition might miss phoning a friend on their birthday, or might forget to pick up something at the grocery store. Inconveniences, but easily rectifiable.

I rely on my Dexcom to help me stay alive. I rely on my health care team, which includes multiple doctors in multiple offices along with back office staff. I rely on my insulin pump. I rely on the diabetes community to keep me informed, and sometimes keep me laughing. All of these help me manage my diabetes better than ever before.

I’m kicking myself for waiting too long to order new sensors. In the meantime, I just have to do the best I can with what I have left, which last week meant dealing with a sensor working into its fourth week. What else can I do?

Proof

Maybe you read somewhere that there was a hearing held last Tuesday by a U.S. House of Representatives subcommittee of the Energy and Commerce committee, on the issues of insulin affordability.

Maybe you watched the hearing and heard testimony from Christel Marchand Aprigliano, CEO of Diabetes Patient Advocacy Coalition, and Dr. William Cefalu from the American Diabetes Association, and JDRF’s new CEO, Aaron Kowalski, as they spoke with the passion that’s been fueling them for years, with the confidence that comes with knowing the truth is on their side.

Maybe you looked in on another hearing held this past Wednesday by the same subcommittee.

In the room being questioned were representatives from the three largest insulin makers doing business in the USA, and the three largest pharmacy benefit managers. It must have been uncomfortable for them at times, as Representative after Representative, republican and democrat, quoted testimony from last Tuesday’s hearing and didn’t allow any of them to get comfortable pointing their fingers at the others.

If you’re new to the diabetes community, or if you live outside of the United States, it might be difficult to understand what the past week and a half has meant to all of us here.

After years of straining to get noticed, our voices are finally being heard. Anyone who’s been marginalized (just ask any non-white person in America) can tell you that being heard means being validated.

The proof of this validation comes after years of asking, pleading, letter writing, Children’s Congresses, and in more recent years, e-mailing and tweeting. It comes after several organizations worked together to bring the issue of affordable access to insulin to the forefront.

And we’re not done yet. There were a lot of statements made by House members of the Oversight and Investigations subcommittee on Wednesday, but the law didn’t change. Pharmacy Benefit Managers can still play their pricing games. Drug manufacturers are still generating a lot of revenue from insulin.

Meanwhile, people without insurance and people of limited means are still rationing insulin. People enrolled in high deductible health plans are still dreading the beginning of a new plan year, when they will pay full price for their insulin and supplies until they pay out thousands of dollars before they hit their deductible limit.

So before you think this is over, and you missed the advocacy train, let me tell you: there is plenty more for all of us to do. We’re on the right track. We need to keep the steamroller going.

And as more than one Representative mentioned, it’s shameful that people had to die before this issue could get noticed. Let’s do what we can so we can reach a day when no one will have to worry about insulin affordability again.

Thank you to all of the advocates big and small who helped open the door to hope again for so many of us. The light is beginning to peak through. Here’s hoping we’re basking in the sunny warmth of a job well done very soon.

Seven. Seven. Fifty-Seven.

A quick check of the calendar reveals that it’s an important week.

My great niece is now seven years old. Also, this blog turns seven today. And I am now fifty-seven years of age.

It’s ironic, isn’t it, such simple math surrounding a blog that focuses on a condition that involves daily imperfect equations?

I’ve been trying to think of how things have changed in seven years at this web address. Probably, subjects have changed due to how the diabetes landscape has changed over the years.

Mostly, that’s good. There have been some fantastic developments over the years, from closed looping to new insulins to advanced advocacy from super organizations that do more than ever before to help people get their voices heard, and help those who need it most.

I am happy, and honored, to talk about all those things.

I don’t think there have been enough recipes here. I love cooking, but not everything I make can be written down in perfect amounts. There’s a lot of some-of-this and a little-of-that in my cooking. But I need to post a couple of new things I’ve tried. They were delicious.

I’ve managed to give away about 85 Champion Athlete With Diabetes medals, to people as close as Pennsylvania and Virginia, and as far away as New Zealand and Mumbai. But I haven’t given away any for a while, and I still have plenty to give away, so write me!

I’ve written a lot in the last couple of years about the way we communicate with one another. Doctors to patients, patients to industry, industry to everyone. I try to be as fair as possible.

I think I’m not as quick to get upset about things as I might have been seven years ago. I hope so. I still like to take my time, think about an issue, and see if there’s something there that no one else, including myself, has considered.

I haven’t always published everything I’ve written. Some things are better left unshared. On the other hand, I’m looking forward to sharing more in the future, whether it’s here or somewhere else.

I love my great niece. And I love her choice in birthday party food: fried chicken. I’m glad to be here today, even if I do feel older than ever. It’s not all bad.

Seven years of blogging about diabetes is not something I thought was possible back in 2012. But I love to write, so here I am. In seven years, I’ve gone from not doing anything or knowing anyone, to being busier in diabetes than ever.

I’m more than grateful for the support of our great Diabetes Community, and the opportunities that have come my way to meet and interact, virtually or in real time, with some of the most special people I will ever meet.

Now, if you’ll excuse me, I have to prepare for two important diabetes-related meetings today. And my regular job on top of that. Life goes on. Thank you so much for reading. I’ll catch up with you again in a couple of days.

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