My turn.

I went for my quarterly visit with my endocrinologist last week. We talked about a great many things.

My A1c is still excellent, but she’s concerned about night time lows. We lowered my overnight basal rate, and that seems to have solved my problem for now.

But I’ve been concerned about the amount of insulin I’m injecting these days. Along with the overnight lows, I’m seeing more numbers over 200 mg/dL than I’m used to.

For the first time in the eight years I’ve been seeing her, we used the words “insulin resistance”. As in, I feel it’s taking a lot more insulin to bring me within range than it used to. I’m very concerned about that, especially because extra insulin not used means extra insulin stored as fat around my midsection. I have enough of that already.

We talked about the fact that I’m active, but also in my mid-50s, which means my metabolism is crap. I eat less now than I probably have at any time as an adult, but I’m frustrated that I can’t seem to drop the weight in measurable numbers.

For now, the plan is to let my endo manage my basal rates, and I will handle the boluses, possibly including dropping my insulin to carb ratio. The change in basals is keeping me from going low overnight. I haven’t lowered the I:C ratio yet, but I’m thinking about it. Those post-meal spikes are really bothering me.

At the end of the visit, she asked if I was considering another pump to replace my Animas Vibe (Animas is out of business in the USA). I told her my general feelings about the various pump options out there today.

I also told her if those options don’t change by the time my warranty is up, I may consider going back to multiple daily injections. After all, a faster-acting insulin is available now, and maybe that will make a difference. She excused herself for a moment, and came back with this:

A sample vial of Novo Nordisk’s Fiasp, the faster-acting insulin we were talking about. I was under the impression that it could only be injected via a syringe. I don’t do that often, but I told her if I ever needed a correction bolus or my pump failed, I would give it a try.

She encouraged me to try it with my pump. I took the sample home, and then took to Facebook to see if there was anyone else who had used Fiasp in a pump.

If you ever want opinions, just ask what People With Diabetes think about a product, and you will get all kinds of responses. I certainly did. Some people love Fiasp. Some hate it. Some see it as very effective in their pump for a day or two, and then not effective at all after that. Some have no desire to try it at all.

I was glad to get all of that feedback. In the end, the decision will be up to me to decide how I like this new insulin. For a little while though, it’s my turn to try it out in my insulin pump. More to come on this in a couple of weeks.

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You do You.

Some years ago, I was taught that everyone’s diabetes is different. On top of that, what works for your diabetes may not work for me, and vice versa.

That’s a great concept… but what does it really mean?

Well, they’re separate sentences, so let’s treat them separately, shall we?

Everyone’s diabetes is different.
Of course everyone’s diabetes is different! We come in all types. Non-insulin producing, insulin resistant, honeymooning, gestationally-high-BGing, and so on and so on. Diabetes comes in many flavors, all extra sweet (I couldn’t resist).

We also look at our diabetes differently. We refer to ourselves as a diabetic, or a person with diabetes. We see our diagnosis as a curse, or as a challenge, or as the greatest blessing we’ve ever received. Not sure I understand that last one, but if people are going to have to live with this the rest of their lives, they should be free to feel how they want about it.

What works for your diabetes may not work for me, and vice versa.
There are now officially more ways than ever to treat and live with this disease. If you’re living with type 2 diabetes, you may be taking something like Metformin or Victoza. Or you might be taking insulin, or some combination of all three.

If you’re living with type 1 diabetes, you’re definitely on an insulin regimen. But maybe you’re getting say, 70 units per day via a syringe or an insulin pump. Someone else living with type 1 might only be injecting 35 units per day. And the reasons for the differences aren’t always as clear as you might think.

We might also be taking additional medications or even hormones to help us manage our condition. Some people who have gastric emptying issues may be taking Amylin, which helps with that sort of thing. Or you may be like me and be taking a high blood pressure medication. Nothing to do with diabetes, except for the fact that when you have a compromised immune system, other health issues pop up from time to time too.

In addition to all that, there are many other additional tools that people use to help them find their best diabetes selves. Some rely on a continuous glucose monitor to help keep track of blood sugar trends, or even to help inform insulin dosing through a closed loop system. Many rely on platforms like mySugr or Tidepool to help them track everything in one place.

And if you’re reading this right now, you’re engaging in self care by participating in the Diabetes Online Community. You can check Facebook groups or Twitter chats almost daily to see how others are doing, and find out if there’s something you can learn about your own diabetes by reading about someone else’s experience.

All of this is why, whenever someone asks me ”What should I do?”, I first ask them about themselves and their experiences. Then, I might provide a couple of resources they could use to learn more. And then I tell them the most important thing:

You do You.

I’m not saying you’re on your own… I’m saying that your individual approach is the one that will be best able to handle the unique form of diabetes that inhabits your endocrine system. Nobody should have to figure out how to do this alone. But once we get ideas and guidance from those we trust, we should be free to personalize our own diabetes priorities.

The proof of success is in the many people living better and longer lives with diabetes, even though they’re each living them in a different way.

You do you. I’ve got your back.

So, you want to be an advocate.

So, you say you want to be a bigger advocate… you want to be more involved. This is a little lengthy, but if you can, stay with me here.

You care, right? You care as much as the next guy. You’d like to get an opportunity to be at important events where the nuts and bolts of diabetes issues are discussed. You’d like to be in the room, and you want to be included in the discussion.

Great. No, really, I mean great… we need more advocates. We need more people in the room, and more people breaking down doors to the rooms we can’t get into yet. I’ve heard this a lot over the past six-plus years, and I’m always encouraged by the willingness of others to step forward and add their voice to the conversation.

Look, I haven’t been in the room a lot either, but I’ve been there enough to know that if you’re going to put yourself out there all the time, there are some things you need to be prepared for. Here are just a few:
 
 
A big change in priorities. You think diabetes messes with your schedule? Let’s add in conference calls with other advocates that are important for planning events and strategies. There are webinars, where information is presented that speaks to exactly what you’re interested in. You’re going to get a lot of e-mail that needs attention.

If you have a day job, look out, because most of these things are scheduled in the middle of the day in the middle of the week. If you do it long enough, you’ll find creative ways to work with your bosses so you can be part of these events but still get your work done. Usually in the evenings and on weekends.

Tonight, I’ll be reviewing diabetes statistics for my state again, so when our Advisory Council’s Diabetes committee meets next week, I’ll have a more thorough understanding of the landscape here in Maryland. You can’t just show up for these things… you have to be prepared.

Travel. You’re probably thinking… I love to travel! So do I. Now, let me give you an idea of what my last two advocacy trips looked like:

Get on a plane from home in the middle of the day. Easy enough. Get to my destination, check into the hotel. There are already things happening, even if the conference or summit or whatever hasn’t started yet. I hope you’re not tired from traveling, because there’s networking to do.

Then there’s the event itself. If someone (a company, an organization) is paying for travel and/or accommodations, they’re likely going to schedule something nearly every minute of the time you’re there. When I was in Las Vegas in March, I spent nearly four full days in conference space. Last month, I traveled to Chicago for the first time in thirty years, and I spent a grand total of about 25 minutes outside of the hotel I was staying in. That’s fairly typical.

And once the events were over, I was gone. In Vegas, the conference ended on Friday, and I was on a plane home at 6:00 on Saturday morning. In Chicago, the event ended at 12:30, I immediately boarded a bus to the airport, and after a full pat down at the security checkpoint, had to run so I could barely get to the gate in time to board my plane. I arrived home at 7:00 on Sunday evening, and I was back at work at 8:00 the next morning. Again, a fairly typical conference experience.

And you know what? I do love it! I wouldn’t have traded either of those experiences for anything. But that doesn’t keep me from feeling like I’ve been run over by a truck as I drag my ass into work on Monday morning.

And I haven’t even talked about the time I haven’t spent with my wife or family because I was away. Or the things left undone at home because I wasn’t there to do them.

Are you ready for that? Several times a year? I’ve taken nine days off from my job so far this year, and they’ve all been for various advocacy-related events. That’s not even counting the days I worked early or late so I could leave early another day to attend late afternoon meetings that lasted long enough to get me home around 8:00 that night.

Responsibility to the community. I don’t know how others feel about this, but from my point of view, if I’m going to be somewhere noteworthy, I feel a responsibility to the diabetes community. A responsibility to not only share what was discussed and the various parts of the gatherings I attend, but to share my feelings about what I was just a part of. Even if those feelings aren’t exactly wonderful. People who were not able to be a part of the discussion should know what was discussed, and have a chance to respond if they want to.

I also feel a responsibility to, where I can, try and help others attend these events. Not everyone needs to be at every conference. Not enough deserving people get to go. When people express a desire to go to a conference, a symposium, or a public workshop, I want to help them get there. So I let people know about applications to conferences, or about FDA workshops open to the public. There are truly more advocacy opportunities out there than you might think. To me, advocating means advocating for more than just myself.

Criticism. If you’re going to be somewhere where diabetes is discussed, and you’re there enough, you’re going to be criticized. Either because your stance isn’t what your critic’s stance is on an issue, or because they think you’re a shill for the company who sponsored your trip, or because they’re just bitter about diabetes for one reason or another. Feelings are real, and whether they’re right or wrong, they’re still feelings.

I’ve been lucky… I haven’t been raked over the coals in a public way like some friends have been after being at an event. But at some point, if your advocacy is big enough, you’re going to have to deal with someone who doesn’t see things your way. And you will have two choices: ignore it, or deal with it. Neither are pleasant.

Cost. Whether it’s a conference, a workshop, or even an ADA Tour de Cure ride, there have been many times where I’ve covered my own travel expenses for a weekend or longer. When I went to Las Vegas in March for #HIMSS18, I received a stipend from the Society for Participatory Medicine that covered my airfare and parking at the airport. Four days in the hotel and every single meal out there came out of my own pocket. When I go to Friends for Life Falls Church in October, I’ll be paying for gas and two days in a hotel out of my own pocket.

At least a couple of times every year, if I want to attend something I’m interested in, I have to pay my own way to be there. And that podcast I do? The equipment I use to record it costs money, as does the platform where it’s hosted online. Those Champion Athlete With Diabetes medals? I don’t get those for free.

Sometimes, you have to pay to play in the advocacy game. Again, I wouldn’t trade those costs for anything. But I realize that I’ve been exceptionally lucky to be able to afford them so far.
 
 
Look, I realize I may have scared a few of you off with what I just shared, but I hope I haven’t. Because we need all the advocates we can get. And my experience doesn’t necessarily have to be your experience. Your level of advocacy, how much time you commit, and how much money (if any) you spend are all within your control.

But those are just five things you have to be prepared for if you want to take your advocacy to the next level. With every meeting, every webinar, every conference, I really hope I’m adding something positive to our community. I can tell you that so far, the effort, the cost, and the results have all been worth it for me.

If they’re worth it for you too, then by all means, step up and let your voice be heard. Where I can, I will help you.

People often say that advocacy isn’t easy. I’m not sure this is exactly what they mean when they say it. But I know that I’m grateful for the advocates who are out there every day, not complaining.

Because I know some of what it means and what it costs to be out there advocating for better lives for all of us living with diabetes. So, to finish up, let me say…

To diabetes advocates everywhere: Thank you.

Finally… Spring.

I’ve waited a long time to write that headline.

Winter lasted an exceptionally long time here on the east coast of the United States, and at times (March and April), it seemed like it would never end. And as it happens every three months or so, I’ve begun to take another look at my diabetes and make a few subtle changes.

To begin with, I started to clean up and rearrange all of my diabetes supplies. Winters are really hard for me. Most years, I just try to get through the winter without attending to anything other than the things that absolutely need to be done. I realize that winter officially ended nearly two months ago… but this weekend, I cleaned up my supply cabinets.

When the weather finally breaks, I take on other tasks related to my diabetes too. Yes, I changed my lancet. 🙂
I also looked at my CGM graphs over the past weeks, and then checked my basal rates to see if they needed to be adjusted in any way. My guess is that I’m fine for now, but I’ll be sure to discuss it with my endocrinologist when I see her in a couple of weeks.
 
 
Spring and summer are also the seasons of fresh produce, and there’s no question I eat better from May through September than I do from October through April. Especially when the fresh produce comes from my own garden.

I actually made a salad with some of that red leaf lettuce this past weekend. And it was delicious.

Do you ever feel like the coming of warm weather and additional sunshine gives you extra energy that you didn’t have a month earlier? That’s exactly how I’m feeling today. Here’s hoping your Spring, or, depending where you live, your Autumn, brings a renewed energy and the motivation to continue to live the happiest life you’ve ever known.

Let’s award even more Champion Athletes With Diabetes.

What does your medal look like?

Does it look like this?

Hey, we all need a goal. Why not a medal that recognizes your hard work and determination in the face of a never-ending chronic condition?

I have such a medal, and I would love to send it to you or a loved one living with diabetes. If it means that 5k run is completed, if tournaments or meets are finished, if someone checks in to their fitness class on a regular basis, it’s worthy of this medal and my congratulations.

Want to get a medal just like this one? The steps are simple:

Send an e-mail to champswithdiabetes@gmail.com. Let me know what you or your special athlete is taking part in, or took part in. Tell me about the resilience it takes to live with diabetes and pursue athletic goals. Give me your address. And I’ll send you a medal!

To date, over 80 Champion Athlete With Diabetes medals have been awarded to people on five continents. Trust me, it’s a cool medal. Our ranks have been growing every year, and I’d like to add you or your loved one to the roster.

Send me your e-mail today, and let me say congratulations for a medal well earned!

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