Category Archives: Diabetes

The Last Five Years.

There’s a play, from a few years back, with words and music by Jason Robert Brown, called The Last Five Years. This post isn’t anything like that, but when I was listening to music from this show a few days ago, I did, indeed, reflect on the last five years in diabetes.

Have you thought about how much has changed in diabetes in the past five years?

You need to go no farther than your Facebook, Instagram, or Twitter feed to find examples of the latest drug, device, app, or DIY AP (Acronyms!) that someone is using. And that’s just fantastic, whether you use any or all of these things.

The Lions Club meeting I attended and spoke at last week had to do with food, and its role in helping People With Diabetes get and stay healthy. One of the things I told this group is that our food choices are important. But I also think of using a toolbox approach to managing life with this condition.

Knowing what specific groups of food do to your blood sugar, and making informed choices based on what you know, is just one tool in the box. Now, let’s take a look at some of the other tools added to our toolbox in just the last five years:
 
 
What about the new classes of drugs available today? They may be expensive, but there’s no question that medications like Victoza, Farxiga, and Afrezza have been beneficial to managing blood sugar, and helpful in just giving us more options to choose from.

I’ve been one of the loud lamenters of the fact that PWDs are down to just three insulin pump choices in the USA now. But what is available seems to be an improvement over previous versions of insulin pumps. Just ask anyone using the t:slim x2, the latest Omnipod, or the Medtronic 670g.

While insulin pump choice is shrinking in my country, continuous glucose monitor options are expanding. Abbot’s Freestyle Libre has been approved by the Food and Drug Administration, and we’re all anxious to find out if it works as well as we’ve heard it does. Which brings me to…

DIY artificial pancreas adopters! This is what the hashtag #WeAreNotWaiting is all about. There are Facebook groups, in-person user group meetings, and people flashing their rigs on Instagram and Twitter. Did you see this coming five years ago? Where will it be five years from now?

There are tons of diabetes apps out there. And more are coming online every day. Some do bolus calculations, some display your CGM reading on your phone (thanks Dexcom), and some allow you to download all of your devices in one place, then allow your medical professionals access to the uploaded data. I’m sure someone was thinking about this five years ago, but it wasn’t me.
 
 
Our lives with diabetes, much like diabetes itself, is ever-changing. It’s interesting to look back on the Last Five Years and see the myriad of changes that have occurred. It’s exciting to think about what The Next Five Years will bring.

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Diabetes Prevention Programs.

In my daily commute, I saw this on the subway train the other day:

I found out that this poster is part of a diabetes prevention and awareness campaign undertaken by the Maryland Department of Health. They’ve developed a nice website, with videos and reference links, that show people the importance of identifying diabetes and prediabetes as quickly as possible.

This mirrors an effort by the Centers for Disease Control and Prevention, which has its own website devoted to identifying those at risk of Type 2 Diabetes, and giving them the knowledge and resources to help them deter diagnosis for as long as possible.

Why are we seeing efforts like these at the state and national level? In my state, over 1.5 million people are said to be living with prediabetes, and only a little more than 10 percent of them know they are at risk. Multiply that by 50, plus the District of Columbia, plus U.S. territories and outlying islands. That’s a lot of people, folks.

Both the state and national programs focus on doing three things:
 
 
1. Take a simple quiz to find out if you’re at risk for developing diabetes (or ignore the quiz because, take it from me: you’re at risk)

2. Talk to your doctor. Your doctor should (emphasis on the word should) have advice for you on how to manage your life going forward, should you be at risk

3. Take a diabetes prevention class. More knowledge is always better than less knowledge, and that’s especially true when it comes to diabetes
 
 
Honestly, I don’t know much about prediabetes. And I really feel that if you’re going to get a diabetes diagnosis, you’re going to get the diagnosis. But why not hold it off as long as possible? I think that’s what these programs are really trying to accomplish.

And just in case you’re wondering: You are worth every effort it takes to feel better and be healthier. Why not take advantage of the many tools at your disposal?
 
 
To find out more about Maryland’s Diabetes Prevention Program, go to:
powertopreventdiabetes.org

More on the National Diabetes Prevention Program run by the Centers for Disease Control and Prevention can be found at:
www.cdc.gov/diabetes/prevention/index.html

Device failures.

I’ve nearly had enough.

The past few weeks have been full of diabetes device failures, and I’m actually asking myself how much more I can take.

Dexcom sensor failures are frustrating me more than I can express here. Since January, roughly one out of every two sensors fail without working more than a day, or ever working at all. I mean, how long do you put up with that kind of unreliability before you chuck it into a box and give up?

And believe me, I’m doing the insertions exactly the way I’m supposed to. Every time I do an insertion, I’m still going back to the online tutorial to make sure I’m not missing anything. The failed CGM sensors have definitely become my biggest diabetes nightmare.

I’ve even stopped contacting Dexcom support about it. The calls are all the same: the support person goes through their script so they can cover everything they need to cover… I get that. Usually, after about half an hour on the phone, they agree to send me a new sensor. But… how much is the sensor, and what is my time worth? In addition, I’ve had to replace a transmitter and a receiver too. In a little over five months. It’s quickly becoming not worth it.

But my pump issues are still there too. I have an Animas Vibe pump where a 200 unit limit to my reservoir isn’t really an issue. But it’s not really 200 units. Because once the pump says the reservoir is at 0 units, the pump stops… even though there are usually around 20 units left in the reservoir. So, something that could last 3 ½ days (for me) winds up lasting barely 3 days, if I don’t have other issues. Why do I have to waste 20 units of insulin every few days?

Which I almost always do, because my Medtronic infusion sets can’t seem to go more than 2 to 2 ½ days before they just don’t want to work as well anymore. At that point, I still seem to get insulin, but instead of hovering between 80 mg/dL and 120 mg/dL, I suddenly go up to 220 to 320. So I have to bolus huge amounts of insulin to try to bring my glucose level down. When I change out the set my BGs go immediately down to a reasonable level again. Why can’t an infusion set be made well enough to last the FDA-mandated three day limit? Or greater?

These are all issues that I did not experience in the five years I was managing diabetes through my previous pump and no CGM. Let me put it another way: my A1c is climbing, due only to medical device failures. This leaves me asking even more questions. Like:

Why can’t device makers make something that is simple, and not as susceptible to breakdowns?

I understand the all-consuming need to develop the next special product with all the bells and whistles, but… why can’t there be a simple option that I can use? My previous pump seemed to do everything I needed it to do. Why can’t I just choose a new version of that?

I actually like my Dexcom when it works… why can’t it work more often, with fewer breakdowns of the individual parts?

I hate to pick on individual companies. But the truth is, if these were cars, I would probably choose not to drive as opposed to breaking down on the side of the road every few days.

Granted, there still aren’t many (in a trending sense) people who are managing their diabetes through pumps and CGMs. But I don’t think that should be a reason for me to settle for inferior products. It certainly isn’t a reason for me to continue to pay for said products without noting where they are coming up short.

And without saying that maybe some device companies need to go back and make their current products as reliable as they can before devoting resources toward the Next Big Thing.

Knowledge, respect, empathy.

I received a wonderful bit of feedback from a colleague at work this week:

”Steve, you did an incredible job facilitating the Millennial panel. You have a knack for being able to ask difficult questions and getting people to open up. Your presence had a calming effect on the group and you exemplified active listening when you rephrased our responses to gain clarification. I hope you take the opportunity to do more facilitation because you’re great at it.”

Little did this person know…

Since I don’t share much of my work in the diabetes community with the people I work with, there’s no way for this person to know that I actually have recent experience facilitating. But this feedback helped underscore the importance of conversation, and the equal, if not exceeding, importance of listening.

A lot has been written about the importance of communicating with your medical team, how to share goals and concerns with them, and conversely, how we would like to be talked to by our medical team. In fact, we talked about this a lot last Thursday during the DSMA Live event in San Diego, which was live via Periscope with the #DSMA Twitter chat going on simultaneously during the American Association of Diabetes Educators conference. This was the first time so many CDEs were involved in conversation with People With Diabetes at the same time, in the same space. We talked about a lot, and I think we all learned a lot too.

I think there are specific themes that translate to our communications with doctors, Certified Diabetes Educators, and other healthcare professionals we see on a constant basis. It’s important to get our points across, and it’s important to listen to and lean on the knowledge and support of caring, dynamic healthcare professionals.

Patients, let’s not forget– the conversation works both ways: just because I live with diabetes doesn’t mean I have the market cornered on sorrow. Maybe my endo has a family member that’s causing a great deal of stress in their lives. Maybe a CDE just got yelled at by another patient. Maybe an ophthalmologist is dealing with the chronic pain that afflicts people living with arthritis. As much as we try to shake things off (being human and all), all of these and more can affect conversations.

And in some cases, our HCPs need to up their game when it comes to reacting to patients. Sometimes we need advice. Sometimes we need changes to our therapies that we’ve been unable to figure out because we’re so close to our diabetes management. Sometimes we need to convey our fears without being judged that we’re not “in control” of our diabetes. Whatever the case is, the fact is, we need something or we wouldn’t be there.

So what can we do? How do we make the conversations between healthcare professionals and patients better, more meaningful, more impactful? Much of it comes down to knowledge, respect, and empathy. And remember, these ideas go both ways.

We need to bring our knowledge to the table, not be afraid to display it when necessary, and not be afraid to admit when we don’t know something. I mention that last part because in the past, I have been more likely than others to gloss over something I don’t know. Admitting that you don’t know something can be difficult because it can make you feel vulnerable. Getting over the feeling of vulnerability can actually be quite freeing. One less thing to worry about. Getting over it can be helped along through respect from the other side of the conversation.

Respect is one of the things that is hardest to get right. On the surface, you wouldn’t think this is true, but respect can often be something we can easily hold back on (for “evidence of worthiness”, for example), and it’s something that we can lose and lose track of quickly without really recognizing that we’ve done so.

But respect for the other person in your conversation really allows for someone to be vulnerable. It allows some space, some comfortable air, for a patient to state that they don’t know what a dual wave bolus is, or that their diabetes burnout is really scaring them. It gives a doctor the room to say that they don’t know anything about inhalable insulin, but they will check it out to see how you can safely fit it into your diabetes management.

Empathy is something that, as I’ve stated before, People With Diabetes possess in abundance. But, and I hate to say this, but sometimes it seems like our empathy only extends to the others in our community. We have empathy in abundance. I think we have enough to spread around to our HCPs too, if we’re not doing so already.

Healthcare professionals can show empathy simply by considering us as human beings first, and as patients second. Though it’s a huge part of our lives, we are more than our diabetes. Those aren’t words that haven’t been written before. But maybe someone hasn’t read them before? Maybe there’s someone who has forgotten them? I don’t know. I do know that becoming empathetically invested in someone else’s life and goals and hopes and aspirations does not cost one single dime. And usually, the rewards are more than worth the effort.

I guess what I’m saying is, you can be a great facilitator too. When you apply the principles of knowledge, respect, and empathy to your online and offline conversations with others, whoever those others are, your conversations mean so much more, allowing room for honesty and growth for the people affected by those conversations. And doing so leaves little room left for judgement. Remember:

I support you… no conditions.

The sailing is not always so smooth.

I’m pretty matter-of-fact when it comes to managing my diabetes.

I try to find the best way to handle things I can, and then I just put my head down and do what needs to be done. No fanfare… just do it. There’s no reason for me to complain about what I have to do, though I completely understand when someone does. But I try to avoid that, because I still have to do these things to keep living a decent life.

Much to my dismay, a simple site change Monday night made me realize that sometimes, even I have difficulty with the day-to-day maintenance of diabetes.

For those of you not in the know, a site change is when the infusion site for my insulin pump is nearing the end of its life cycle. According to the U.S. FDA, that’s three days. According to me, it’s as long as the insulin in my reservoir holds out (around five days with a 300 unit reservoir, 3 1/2 to 4 days for a 200 unit reservoir).

Site changes are no big deal, until you realize you’re removing something that’s been attached to you, under your skin, for a few days, and replacing it with another thing that will be attached to another part of your body for a few days. If you’re me, you have to insert the cannula (the plastic tube through which the insulin will flow) using a 9 millimeter needle you have to voluntarily jab into your skin at a violent speed. You know, no big deal. You just have to do this every few days.

What I just described is (usually) not a huge event for me. After six-plus years of pumping, I’m pretty used to it. But for the first time in a long time, Monday was different.

I came home from work with less than 20 units left in my reservoir. My pump had been beeping about the low reservoir for a couple of hours already. At this point, I’ve known for days that I needed to do a site change at this time, and instead of doing the site change, I sat down and ate dinner. I also sat around after dinner. I watched the news, I checked my e-mail, I talked with The Great Spousal Unit. What I did not do was a site change.

Eventually, I had to do it. Now it’s nearing time for bed, and I don’t have enough insulin left to last through the night, and I finally resign myself to the fact that yes, this must be done now.

And I did the site change, but not without some grumbling and swearing and loud complaining because my first two tries at getting the cannula in failed. Looking back on it, I know I must have looked like a spoiled child throwing a temper tantrum. I was not a happy camper.

Just thinking about all this makes me feel guilty, because, hey, at least I have access to tools like this that afford me lots of flexibility in getting the one drug I cannot live without. On top of that, I know that through the lens of the Diabetes Online Community, many times it looks like we’re rock stars when it comes to tackling the tasks necessary to keep our A1cs as low as they can be.

If you look at it from either of those two points of view, you’re likely to say Suck it Up, dude. Deal With It. And you’d be right. I’m not looking for sympathy here. I’m really just trying to describe my experience and get it down in writing. And maybe find some answers.

What I do know right now is: often I am the rock star. And sometimes, like Monday, I’m not. Is it the same for you? Do you ever find yourself sailing along, then confronted with the notion that maybe things aren’t sailing along so smoothly?
 

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