Category Archives: Diabetes

What are your dreams for the future?

June 27, 2019 – 10:11 am

Earlier this week, I talked about how far closed loop technology has come in the past ten years or so. Today, I want to ask you: What’s next?

In other words, what do you think is next in diabetes care? What are you wishing was next? What do you want your world with diabetes to look like in five or ten years?

Maybe you just care about a cure and nothing else. That’s fair. Perhaps you’re interested in trying a patch pump, whenever it’s available in your country. Or maybe you want to learn more about that implantable CGM you’ve been seeing headlines about.

Would you like to see improvements in software to help you keep track of your diabetes hour by hour, day-to-day, week-to-week? Is there a nifty device you’d like to see developed?

My interests these days not only focus on diabetes, but on health care in general. I’m interested in what people living with conditions other than diabetes experience, and if there are any parallels to diabetes. I want to hear about their interactions with health care professionals, and whether there’s anything I can learn about that.

Of course, I’m interested in how we can improve access for new and existing patients, to help them get the best of what is already available. I will keep fighting for that as much as I can. Same goes for families and loved ones of those living with diabetes.

As far as everyday diabetes goes, two things:

First, I can’t wait until there’s a glucagon solution that doesn’t require a bunch of steps to go from unpackaging to injection. That’s exactly why there isn’t any glucagon in my house. The time has more than come for this. Here’s hoping it gets to approval and into our hands in the very near future.

Second, I think I’d like to see some improvements in insulin pump infusion sets. There really haven’t been changes in infusion sets in the almost ten years I’ve been pumping, and I think there’s an opportunity there for someone to make a difference. Ultimately, I’d like to see a less invasive (read: less scarring) set that could also last a little longer than today’s infusion sets do. I realize that’s a stretch… I’m just wondering if it’s possible, and if it is possible, how to get it from idea to approval.

I realize those are two non-pie-in-the-sky things, but I’d be happy if they happened anyway. And really, any improvement in diabetes drugs, technology, devices, therapy, and access are huge wins for our already too large community.

Now, let me bring it back to you again. What are your dreams, wants, needs, and desires for the future?

By StephenS | Tagged , , | Comments (4)

What’s my Motivation?

April 25, 2019 – 10:22 am

Look, we all know diabetes can be hard. There are countless tasks we must perform to make our numbers look good at endo appointment time. Still more to do at or after endo appointment time.
 
 
Do I really have to list them here? Okay, I’ll list some of them:

– Check blood sugar

– If you’re an insulin user, bolus appropriately

– Stay active

– Get your eyes checked at least yearly

– Refill prescriptions and durable medical supplies

– Handle unexpected highs and lows as they occur, because they will occur, usually at an inopportune time. When is an opportune time for an unexpected high or low?

– Deal with insurance claims and denials and FSA or HSA reimbursements

– Oh yeah, live our everyday lives, interacting with family and friends in a manner that suggests that we have all of this shit together allll the time
 
 
Let’s think of this in an either/or sort of way: If you don’t have diabetes as a part of your life, you don’t have to be responsible for any of the above. If you do, you have the above as a nice starter list, but it’s not all you’ll have to do.

So as you go through your life, taking care of all of these things, day after day, every day, I think it’s understandable if you stop and wonder: What’s my motivation for doing this if I’m only going to have to keep doing it forever?

I mean, there’s the whole “we do it to stay alive” thing, which is the most important, and should never be overlooked. But beyond that, I think it’s a legitimate question. For me, there have been days when the repetitiveness of it all has become either all-consuming or overwhelming.

What do you do to stay motivated? What helps you get through those difficult days?

Often, I find myself fighting back the urge to give it any consideration at all, and I just plow ahead. That can be a recipe for disaster… read any number of articles on the link between diabetes and depression to see what I’m talking about.

But not thinking about it too much helps me deal with things when I need to, and not feel guilty about things when I let them slide a bit. In that way, this strategy may be more helpful than hurtful.

In the end though, I think what motivates you is what motivates you… whether it’s so you can feel better, so you can live longer, so you can help your loved one live their best life, so you can get a great big Grande Latte once you finish everything on your to-do list.

Your reason is the right reason for being motivated and staying motivated. We are too important, all of us, to forget that. Your worth is your motivation. That’s enough of a motivator all by itself.

By StephenS | Tagged , | Comments (1)

What else can I do?

April 16, 2019 – 10:11 am

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?

By StephenS | Tagged , | Comments (1)

The mundane, unrelenting details.

November 8, 2018 – 1:11 pm

Injections. Meter checks. Pump site changes.

And CGM sensor changes.

When you live with diabetes every day for the rest of your life, these things can become quite mundane. Oh, time for another change… it’s just what I need to do, no big deal. Done it thousands of times.

But when I think of the entirety of it all, mundane is not exactly the word I would use. The word I would use would be somewhat more colorful than that.

Especially when performing one of these tasks is more difficult than usual, I begin to feel it. I remember the last task I performed, and the one before that, and the one before that, and the one coming up after this one and the one after that. Before long, I start to wish for the days before these things became a part of my life.

Today, my CGM sensor change was a tough one. I took great care to get everything placed on the back of my arm. As I inserted the sensor this time, I had the plunger pointed downward, which is opposite of how I like to have the sensor pointed. But hey, I can’t insert it into the same place every time, and doing this ensures that I move the sensor to a different place from where it was the last time I had it on this arm.

But the plunger needs to move forward to come off, and I had to get my opposite hand onto the plastic in front of the plunger anyway to release it. That made getting the plunger released, usually a job taking seconds, take a couple of minutes. More time to think.

Then, I had to insert the transmitter. Again, my opposite hand needs to put it in the right spot so I can snap it into place. But because I can’t really see because my hand is in the way, I try to do it all by feel and it just didn’t feel right.

Eventually, I had to go upstairs in front of a mirror so I could see where it was going and snap it in. More time to think about this crazy stuff we do to care for ourselves that not many people ever have to think about. I want to be one of those people again.

In the end, it all worked out, the sensor is doing its thing, and I’m back to tracking my BG trends on a 24-hour basis. Until the next time. Ugh.

This is where I often just try to forget about it. Amnesia works to keep you from feeling overwhelmed by all the crap. Right now, forgetting it is a little more difficult. But… for today… success. And that’s got to count for something.

By StephenS | Tagged , | Comments (1)

Your Government at Work (Part 2). Let’s build a community!

September 27, 2018 – 12:25 pm

This is a fairly short post (for me, anyway).

If you didn’t see my post on Facebook about this earlier, I invite you to check it out now. It’s from the Center for Devices and Radiological Health (CDRH) at the U.S. Food and Drug Administration (FDA).

CLICK HERE TO FIND OUT MORE

CDRH is the group that looks at things like insulin pumps, CGMs, and artificial pancreas systems. I think the focus of this initiative is to help foster collaboration when it comes to design and improvement of devices that help us manage our diabetes (and other conditions, but since this is a diabetes blog, that’s where my focus is).

I don’t think that CDRH and FDA are saying that they’re building a community… I thiink they’re saying they’re interested in helping communities build themselves, and listening to those communities when it comes to device development, submission, and approval. How great is that?

The best part is, you can be involved. I wish I had a dollar for every time someone said to me, “I’d like to be in on something like that, but I never get the chance”.

Well, here’s your chance.

Here’s the first paragraph of the notice from CDRH, which says a lot:

One of the Center for Devices and Radiological Health’s (CDRH’s) strategic priorities for 2018-2020 is the creation of collaborative communities to bring together medical device stakeholders to achieve common outcomes, solve shared challenges, and leverage collective opportunities. CDRH believes collaborative communities can contribute to improvements in areas affecting U.S. patients and healthcare. We encourage interested stakeholders to learn more about collaborative communities and review the toolkit, which provides a collection of helpful ideas to foster strong collaborative communities that are well-prepared to take on healthcare challenges.

CLICK HERE – GET INVOLVED

If you read here often, you understand how much I believe in community-based approaches to challenges everywhere. And how much I believe in all of us being involved in said communities.

So let me ask you… why not you?

Enjoy the rest of your week.

By StephenS | Tagged , , | Comments (1)