Category Archives: Diabetes

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?
 

Old School vs. New School

Fact: I’m not a spring chicken anymore. I’ll be 54 in about two weeks. So you’d think I’d be someone who rejects everything new, clinging to my old habits and my old way of life (pun intended) as long as I possibly can.

If you think that, you’re wrong.

Okay, well, you’re not entirely wrong. I drive a thirteen year old truck (still in great shape), I cling to every last dollar like it’s my last dollar, and I’m not much of a Coldplay fan. But I recognize that Old School definitely loses out to New School when it comes to my diabetes.

Sure, I hung onto my previous insulin pump for nearly six years before getting a new one. But I did get a new one, and it seems to be working fine. I like the new color too (blue). And although I’ve been using the same meter for a few years now, in my opinion, it’s the best for me, so I’ll continue to use it as long as I can afford the strips. Which may not be very long. However, if something better for me comes along, I have no problem choosing that one and leaving my Accu-Chek Nano behind.

I’m always surprised when I come across people at a gathering where they are so excited for the future of technology, but almost in the next breath tell me that they can’t quite bring themselves to consider a new CGM, or a new meter, or even updated, free technology that’s available out there on the interwebz.

The truth is, innovation is only good if we actually put it to use. If we see something out there that might work for us, might help us manage our diabetes better, why not consider it? Where would I be if I hadn’t started on an insulin pump six years ago? Where would I be if I hadn’t learned more about counting carbs and sugar surfing?

The caveat to all this is, of course, that not everything new works for everyone living with diabetes. New things might mean more options; they don’t necessarily mean new requirements. But sometimes new is helpful. Researchers are finding new successes in typically Type 2 medications being used by Type 1s. They’re also finding success when they see some Type 2s start on insulin sooner.

Looking back, it seems like each decade brings different options for dealing with our diabetes. And that’s always good, even if I don’t always adopt every new option right away. Even though I’m a little Old school, I know that thinking New school and looking for the latest in technology and ideas will always benefit me and my diabetes.
 

Do People With Diabetes obsess too much? Or is it just me?

I was in the grocery store a few weeks back, in the aisle where the boxed juices sit on the shelf.

As I stood there looking at the flavors (because rule #1 for hypo supplies: taste good), I was also checking out the carb count of every single juice box in the aisle.

“Well, this one looks good, but it’s 22g of carbs per box. This one is 12g… how do I count/bolus for that? Each box of this juice is 15g, which I want. But the flavor is… not my favorite”.

After standing in front of these shelves for over five minutes, I asked myself (out loud—good thing I like to shop early in the morning) whether it really mattered if a juice box had exactly 15 grams of carbohydrates per box. I mean, if I’m in the middle of an overnight low, and I need to treat with a juice box, I don’t think an extra 7 grams is going to make a huge difference. So I wound up picking the juice with the flavor I liked (fruit punch), but 22 grams of carbs.
 
Obsession
This is just my viewpoint on the subject… I completely understand if you are into exact measurements and precise management of your diabetes to get to, and remain in, a good glucose range all the time. In fact, I admire you for that level of dedication.

But you know, I just wonder if years of exchange diets, A1cs, and carb counting has made me obsessive about a gram of carbohydrate here and a couple of BG points there. It was brought into focus for me about a year or so back when I visited my endocrinologist, she relayed my lowest A1c result ever, and in the next breath wondered herself if I had been obsessing too much. Her very words were “You know, it’s not the end of the world if your meter reads 140 mg/dL before dinner once in a while”.

Plus, and I don’t think this happens to everyone, but it happened to me: As I experienced more success with my A1c results, I became more and more of a micromanager about my numbers. I mean, it’s great when you get good results from it, but I don’t think I can keep it up forever. And mostly, I need to remember that I don’t know everything, or even much, about day to day management of my diabetes. You may disagree with that, but there’s no denying that I could stand to learn a lot more.

The other side to this is what happens if something unexpected happens when your numbers are so tight. And something unexpected is bound to happen once in a while. I’m fond of reminding people that the better your numbers are, the closer you are to hypoglycemia all the time. It’s a lot scarier to go from 100 to 50 than it is to go from 200 to 150.

If I’m obsessing over anything right now, it’s probably my basal rates and my insulin to carb ratio. Over the past two years, I’ve also cut down a lot on my daily caloric intake. So if I can get the basal and insulin to carb ratio numbers right, I think I will be in a good place with my diabetes about 80 percent of the time. And if you told me six or seven years ago that I could be on top of my diabetes 80 percent of the time, I wouldn’t have believed you.

How about you? Are you a control freak about your diabetes? Or are you more of a rounded, but nice, edges Person With Diabetes?
 

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