Tag Archives: diabetes

Apparitions and Optimism.

July 10, 2018 – 10:11 am

You know, if I were to describe a condition that’s as emotionally charged as it is physically challenging, I don’t know if I could describe one that fits the bill more than diabetes.

Our blood sugar can go from to perfectly annoying to perfectly comfortable to perfectly fearful in the span of a single day. We can do nothing we’re told to do to take care of ourselves and wind up with zero complications. We can do everything we’re told to do to take care of ourselves and wind up with multiple complications. Yes, we think about these things almost daily.

So we hope.

We dream of the day when we won’t have to worry about our poorly or totally non-functioning beta cells. Parents of kids living with diabetes dream of the day when they won’t have to check to see if their child is still alive in the middle of the night.

We’ve seen a number of promising products talked about on websites, in podcasts, and over various forms of social media. But most of those products never make it in front of patients.

Many don’t make it simply because they’re bad ideas. Others don’t make it because they’re not any better than the products they’re aiming to replace. Still others fail because the laws of science just won’t allow for the inventor’s dream to become a reality.

Some of the drugs and devices we get excited about do make it to market. But then they fail anyway. Again, because they’re a bad product, they’re not much of an improvement over existing options, or the company that produces the product just can’t make enough money from it.

When I think about all of the drugs and devices that don’t make it, inside and outside of diabetes, I often wonder why anyone even keeps trying with this stuff. Why do you try to develop a new insulin if it’s not going to be anything more than another insulin? Why try to come up with a new way to measure glucose in the body when only a few ways have ever proven to be successful so far?

The diabetes landscape, and the health care landscape in general, is a continuing exercise in finding apparitions on the desert horizon and waiting to see if they turn out to be a mirage. Yet, the overwhelming majority of us continue to hope as well. Our optimism may take a hit now and then, but it still remains as part of the health care landscape.

Why is that?

Well, to begin with… in many ways, optimism is all we have. It’s okay to despair now and then, but all you’re left with at the end of despair is more despair. When you have optimism, even if your optimism takes a hit today, tomorrow you still have optimism to go on.

That’s why I think people still go out and raise money for JDRF even though more people live with Type 1 diabetes today than ever before. It’s why brave people at the U.S. Food and Drug Administration worked to make the pathway to approval for new drugs and devices better and more transparent. I even think there may be people at companies working on products because they truly care about making life better, not to mention longer, for all of us living with diabetes.

I’ll be honest… my optimism has waned a great deal in the past two years. But I’m encouraged by the fact that people around me aren’t giving up. And if they won’t stop grasping for something better, I won’t either.

Here’s hoping that today’s apparition becomes tomorrow’s validation of optimism for everyone living with diabetes.

By StephenS | Posted in Random Glucose | Also tagged , | Comments (1)

The curse I dare not speak.

July 5, 2018 – 10:11 am

Don’t worry… I have nothing weird to share today. I’m just going to riff for a bit about something that’s been on my mind, but I don’t like sharing.

As the months and the years go by, I’m worried that insulin resistance is becoming a larger part of my life.

I’ve alluded to this before, but the basics are this: I eat less today, including less carbs, than I’ve ever eaten as an adult. Yet my insulin needs are higher than ever before.

I’ll bet almost every Person With Diabetes feels like they take too much insulin to stay alive. I certainly do. How can you not?

Well, for about six months now, my insulin needs have increased by about 20 percent, on an nearly daily basis.

When I say I’m requiring more insulin, I mean I’m adding more insulin in terms of meal boluses and correction boluses to continue to keep my glucose in a safe range. It’s just… a lot of extra insulin, nearly every day.

My A1c is still very good. But to keep my A1c where it is, I need the extra insulin, and that bothers me more than I can tell you.

It bothers me because extra insulin gives me the feeling that I’m not taking care of my diabetes well enough. If I really think about it, I am taking care of my diabetes. However, when you come to the realization that this is really happening, you start to ask why, and at that point, it’s a short walk to blaming yourself.

I’m also bothered because extra insulin indicates the possibility of extra weight gain. Hell, let’s be honest… at my age, with my ever-slowing metabolism and the fact that I can’t work out as hard as I used to, extra insulin almost certainly means weight gain. Dammit.

So, what do I do? I have to face this like I face everything else.

First, I’ve got to realize that I’m lucky: I have access to insulin and a good insurance plan through work that makes getting insulin expensive, but still possible. Next, I have to rule out any outside reasons why I might need more insulin right now.

Once I do that, I’ve got to do the best I can, so I can mitigate the effects of the extra insulin I’m using. To the extent I can anyway…

There are a lot of things we’ve got to deal with, a lot of things we have to swallow as we go through our lives with diabetes. None of them are things we look at and say, well, that’s not too bad. They all suck.

But to the extent we can make them suck as little as possible, even if they suck a lot, we can still claim the power over how these things make us feel. Especially when we feel powerless to stop them.

By StephenS | Posted in Diabetes | Also tagged | Comments (2)

8 Things: Communicate wisely.

July 3, 2018 – 10:11 am

Let me just say from the outset… I doubt that many who actually need to read this will do so. Also, I’m not even going to try to top what Renza wrote, because it says so much of what I’m thinking too. Being kind is the best way to establish respect and maintain your own self-respect.

But for the sake of providing my own perspective on how to get along inside and outside of the diabetes community (and I can’t believe we’re talking about this again), here are 8 things I try to keep in mind when I engage with someone who holds a different point of view.

1. First, I almost always wait.

Why wait when your point of view is under attack and it seems like everyone else is responding and jumping into the fray?

There are lots of reasons to wait. Often, just waiting takes the air out of someone’s self-important balloon. By the time you respond, they don’t have as much energy left to disagree with you. Also, and I can’t stress this enough… waiting gives you time to form your words and consider how you’re going to respond, or if you’ll respond at all.

That doesn’t mean I’m doing nothing while I wait. It just means that I’m not responding yet. However, I may be writing a draft of what I want to say; or figuring out a strategy for responding that includes what I want to say and what I want to say to any potential responses to my initial response.

By the time I finally do respond, I almost always do so with a more measured, more powerful message.

2. But sometimes, you just have to let it go. Not everything, or everyone, deserves your response. Some opinions and the people who speak them need to exist in a vacuum all by themselves. Restraint is tough, but sometimes you have to go high when they go low, to quote Michelle Obama.

Also, I like the idea of Abraham Lincoln and the “hot letter”. When confronted with an attacker either inside or outside of government, Lincoln would sometimes write a letter detailing his exact thoughts in the moment. Often, he wouldn’t send them or even sign them. I believe they were catharsis in a way, and probably sometimes, a first draft of a more tactful response to a difficult situation. I’ve done this too.

3. Try to address the issue, not the person. When I was a retail manager, I used to tell my employees that despite what we’re told, the customer is not always right… but the customer should never be made to feel like it’s their fault they’re wrong. Even if it is.

As much as I can separate the issue from the person expressing their opinion, I try to do that. Hurt feelings over being wrong about an issue is something people can get over. Hurt feelings over personal attacks are a much bigger hurdle.

4. Find the dividing line. There’s a dividing line somewhere, between anger or disappointment, and just being bitter. I’m okay with acknowledging someone’s anger over an issue, or disappointment at being left out of a discussion. But if you’re bitter? You own that all by yourself pal, and you’ll have to live with it, because I’m not going to validate your bitterness by responding to it.

Sometimes it can be difficult to find that dividing line I mentioned, but the more you can separate anger or disappointment from bitterness, the more likely it is that you’ll wind up maintaining a decent amount of personal space between you and your critic. And you’ll be more likely to maintain the respect of and from a critic, as long as they don’t cross that line into bitterness.

A few other very important points I’d like to make:

5. Make sure you’re right. If you’re calling out a journalist for using the word “gadget” in a story on medical devices, you’d better make sure you haven’t used the same word in the same context on your blog or in Facebook posts. Nothing kills your argument faster than contradicting yourself.

6. It’s okay to let someone have the last word. I’ve often stated my point of view and told my counterpart that I will let them have the last word. That does two things: 1) It closes the conversation after they make their last point; and 2) It really makes them think hard about the last point they’re going to make, because they know I’m not paying attention after that.

Especially when they’re being bitter, sometimes the best way to handle a detractor is by letting them cry themselves to sleep, so to speak. The more they display bitterness, the more my lack of reaction shines a light on it.

7. Sometimes, it’s better to handle things personally. In other words, through an e-mail, or even one on one at a conference or meeting. That can be more difficult because it doesn’t offer the false high that comes with a swift social media response. Regardless, public displays of outrage are not always the best way to get your point across.

8. Forever is a long time. It’s forever, man. I have had difficult communications with individuals, even where they were being bitter, and ended them in ways that leaves the door open for reconciliation. Now we can at least have a decent conversation online again, even if I don’t agree with their point of view.

Say what you want to say. But if you’re going to set something on fire, make sure it’s worth torching. I speak from experience, and trust me, you don’t want to have to cross back over a bridge you’ve already burned.
 
 
I hope these are useful pointers for you as you continue to navigate the information superhighway. Remember that people are on the other end of what you post. People with feelings, with jobs they’d like to keep, with families to feed, and with reputations they’d like to keep intact.

Aren’t you the same?

By StephenS | Posted in Social Media | Also tagged , | Comments (3)

A Day in the Life.

June 28, 2018 – 10:11 am

Earlier in the week, I sat down for an interview with a person doing research on patient perspectives regarding continuous glucose monitors, or CGMs. It wasn’t as dull as that might sound; in fact, it was a great conversation and the time flew by.

Among the questions I was asked were things like “How much do you think about diabetes throughout the day”, and “Describe a typical day managing your diabetes”. I believe many of us bloggers did a “day of diabetes” or some sort a few years ago, and to be honest, I haven’t really written anything like it since.

But, since I was asked, now I’m thinking about it a lot. Here’s how yesterday went for me and my diabetes:

Wake up.
My alarm went off like it does most every morning at 4:30 a.m. Yeah, I hit the snooze and turned over for another 15 minutes, but before I did, I checked my phone to see what Dexcom had to say about my morning glucose level.

I’ve been experiencing some wicked dawn phenomenon lately, sometimes waking up between 60 mg/dL and 80 mg/dL, and 45 minutes later being between 180 mg/dL and 200 mg/dL. Before breakfast. So I checked my phone to make sure I wasn’t already at 150 or above.

I got up, I showered, got dressed, the usual. I went downstairs and fed Max the Cat, took my daily medications and vitamins, and made a cup of coffee. I checked my BG using my glucose monitor to calibrate my CGM, which I have to do every 12 hours. And I pre-bolused for breakfast. There were about 35 grams of carbs in it.

Go to work.
You might think, hey, get in the car and go to work? That’s no big deal! But I only drive about a mile before getting on a commuter train for 20 minutes or so. Then I have a half mile walk to the office.

That means making sure my BG is high enough to sustain me while I make that commute. It also means I need to have fast-acting glucose (in my case, candy) in my pocket just in case I dip low somewhere along the way.

Blood Donation.
It just happened that yesterday was our semi-annual blood drive at work, so I sat down and opened up a vein to do a double red cell donation. I’ve already written about what that’s like. Some People With Diabetes in the USA are eligible to donate blood. I am happy and honored to be one of those people.

Diabetes didn’t really play into this donation, except that I kept checking my phone in the hour before my donation to make sure I wouldn’t have to worry about a low during the bloodletting process.

Work. Advocate.
If I’m not working from home, I sit at a desk all day in the office. I have to make sure I have juice and candy in my desk. I also need to have access to water, and have a chance to get up and walk if my BG gets too high during the day.

Yesterday, I also fired off an e-mail to a colleague in charge of real estate and workplace design for the company. They’re involved in a project right now to transform the way our teams work, and the space we work in. My e-mail mentioned my needs as a Person With Diabetes, and also a reminder that I’m probably not the only one at my company living with a chronic condition that might need attention or special accommodation.

Head home.
About 4:15 p.m., I headed home. Another half mile walk, to the train station, a ride back to the neighborhood, and a quick ride the rest of the way home.

Except my blood sugar dropped dramatically by the time I reached the station. I went through the candy in my pocket, and I was still low. The train was packed, and I stood all the way. I was unsteady, but I’ve done it before, and in that moment, I really didn’t have a choice in the matter. I made it home okay.

Later.
I had a little leftover chicken and pasta salad for dinner. I made a quick run for necessities at the grocery store. I sat down to write most of this blog post.

And I participated in the wonderful #DSMA Twitter chat that happens every Wednesday night at 9:00 p.m. Eastern time in the USA.

For all of the extra tasks, the worry, the highs, the lows that I experience in a given day or a given week, the #DSMA chats are just what I need, reminding me that I have support out there, and no matter how hard my day might have been, there are others who have to work just as hard or harder to live their lives with diabetes.

I would add sleep here as a final entry, but c’mon, you took that as a given, right? Yeah, I deal with diabetes a lot every day. When you live with a condition that’s with you 24 hours a day, seven days a week, you tend to think about it almost that much.

That’s why reducing burden is such a big deal with us. If you can’t give us a cure, give us less work and less worry. That’s my day of diabetes. Just one day. Tomorrow, it all starts over again. The next day, the same. Forever.

By StephenS | Posted in Diabetes | Also tagged | Comments (3)

Diabetes in the summer heat.

June 26, 2018 – 10:11 am

I don’t believe I’ve ever written anything like this before. But, since we reached the summer solstice in the Northern Hemisphere last week, I think I’ll take a moment to talk about warm weather and diabetes, which don’t always mix well.

To begin with, did you know that People With Diabetes have a harder time regulating their temperatures in the heat than others do? According to the U.S. Centers for Disease Control and Prevention, stresses on blood vessels and nerves can affect sweat glands, keeping us from cooling effectively.

We also get dehydrated easier. And if you’re an insulin user like me, temperatures north of 90° Fahrenheit change how we use that insulin.

Humidity is a factor too. Another thing I found out is that humidity keeps us from cooling because the sweat we do produce can’t really dry when it’s humid, and the drying is part of what helps us cool off.

Some of the things we should be doing to take care of ourselves at this time of year are summer no-brainers: drink lots of water, don’t go on a bender in the sun, wear loose, comfortable clothing… the usual.

But some other things are really important to remember for our diabetes. Like how insulin is affected by temperatures over 80°F. You don’t want the insulin in your pump skunked because you were working in the yard all day in the hot sun.

That’s why, on hot days, I take breaks more often than I might in the spring or autumn. I go inside. I cool off. I rehydrate. I make sure the insulin in my pump cools off too.

Here’s something else: plan for emergencies. We lost power at home for a little over 24 hours last week, when daytime thermometer readings were well into the 90s. If the outage would have lasted 24 more, I would have needed to go to my emergency plan for storing insulin: a cooler full of ice, my insulin vials in a plastic bag, wrapped in a thick towel. That will keep it cool enough without freezing it.

If you’re traveling or just out for the day, I suggest using a simple lunch cooler, with a gel pack or something similar inside, that will keep your insulin cool. Remember to wrap the insulin in something like a towel… you want to keep it cool, not frozen. If we’re just out for the day, I might freeze a bottle of water overnight and use that as my cooling agent. Once it’s melted, I can have it to drink on the way home.

Don’t forget that heat affects glucose monitors and test strips, and CGMs too. It’s also worth remembering that when you get into your car on a hot day, the extreme temps that exist in the short time before your A/C kicks in can mess up your pump and the insulin in it pretty fast.

That’s my summer diabetes sense two cents. I’m sure you probably have your own tips and tricks for dealing with diabetes in the summer. Feel free to add yours in the comments below.

Happy Summer!

By StephenS | Posted in Diabetes | Also tagged | Comments (8)