Category Archives: Diabetes

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?

The mundane, unrelenting details.

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.

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

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.

In..cre…ment…al…Change

So, you might have seen this news from Eli Lilly and Company this week…

Lilly Diabetes Solution Center Now Open to Help People with Insulin Affordability

If you haven’t read it yet, here’s the short version: Lilly Diabetes has set up a dedicated unit with the purpose of helping people who are having trouble covering their insulin costs.

This is just my viewpoint, and you are free to disagree if you like. I’ve considered this announcement with the old Pros and Cons exercise. First the Cons, then the Pros.
 
 
Cons

– When I think of the term “Diabetes Solution Center”, I think of a mythical place where I’d go to be cured of this condition. That would make insulin a hell of a lot less expensive.

– Insulin is too expensive, price increases have been far too frequent, and we can measure Lilly’s revenue from insulin in billions of dollars. Per year. Why not just lower the price?

– You can only access the Diabetes Solution Center by phone. And it’s not a toll free call. In addition, the Diabetes Solution Center is only open from 9:00 a.m. to 8:00 p.m. Eastern time (US) Monday through Friday. That’s 6:00 a.m. to 5:00 p.m. on the west coast, and 3:00 a.m. to 2:00 p.m. in Honolulu.

– Most people, especially vulnerable populations, only find out about price increases when they go to fill their prescriptions. Many pharmacists, because of contracts they sign with Pharmacy Benefit Managers, aren’t allowed to inform patients of the Diabetes Solution Center. That’s what’s known in business circles as a “gap”.
 
 
Pros

– The day before this announcement, Eli Lilly & Co. didn’t have this option available to patients who struggle to afford the insulin they need to live.

– Lilly is spending money on technology and manpower to staff the Diabetes Solution Center.

– I think, and this is just my interpretation, that Lilly Diabetes is finally coming to grips with the fact that insulin affordability and insulin access are major issues. You can opine on how much they have to do with insulin affordability in America, but again… no one is holding a gun to their heads to force them to do this.

– If one person, or two people, or a hundred people are helped so they feel less burden, pay less for insulin, get more assistance in meeting their deductible, the Diabetes Solution Center will be a godsend for those who are impacted.
 
 
As much as it pains me to admit it, we were never going to go from non-affordable insulin to affordable insulin overnight. This move by Eli Lilly & Co. stops far short of what almost all of us want. But at least it’s a move in the right direction. Incremental change is still change.

Language I can appreciate.

In a moment of complete boredom last week, I actually Googled the word “diabetes”. You know, just to see what would come up.

Fortunately, the top search results were primarily from diabetes organizations here in the USA, and from various diagnosis/doctor websites. In all those cases, the groups devoted a page, or part of a page, to describe what diabetes is.

So, because I like a little adventure now and then, I decided to check out all those descriptions. Well, not all, really. In fact, I looked at about ten of them. I didn’t want to be too adventurous, after all.

Far and away, I thought the best description belonged to the National Institute of Diabetes and Digestive and Kidney Diseases, or NIDDK, because I can never remember National Institute of Diabetes and Digestive and Kidney Diseases.

NIDDK is a division of the National Institutes of Health here in the United States, and they do a tremendous amount of work in this area. They are among the most important of government workers dedicated to diabetes research.

I liked their description because, first of all, they described diabetes in succinct, easy to understand terms. I also liked this little bit they threw in too:

“Sometimes people call diabetes “a touch of sugar” or “borderline diabetes.” These terms suggest that someone doesn’t really have diabetes or has a less serious case, but every case of diabetes is serious.”

The description goes on to mention the most common types of diabetes, Type 1 and Type 2, and also has links to other forms of diabetes like monogenic diabetes (like MODY) and cystic fibrosis-related diabetes. Most descriptions online leave these out completely.

The page also lists the latest statistics on the prevalence of diabetes in my country, and links to what I think are important things to remember if you live with diabetes.

For now and future reference, you can find the full description HERE.

It seems we spend a lot of time these days noting when people get the facts wrong about diabetes. Just as important, I think, is noticing when we see the facts clearly presented as they are, in language that nearly everyone can understand. Trust me… it’s worth the bookmark.

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