Category Archives: Out Of the Box

Here’s to the Heroes.

At the Diabetes UnConference, there’s a term we use for the people who share our lives with diabetes, but who don’t actually live with diabetes themselves. We call them People who Love Us, or PLUs.

Where would we be without them?

Diabetes, at its best moments, requires us to perform a number of tasks and stay on top of a number of factors throughout the day, every single day. It can seem overwhelming at times. How wonderful it is to know that someone has the patience to allow us to handle things despite the moments where things don’t turn out so well.

Diabetes forces us to confront realities that others never have to deal with. Hypoglycemia, diabetic ketoacidosis, and words associated with complications and co-morbidities are constantly in the back of our minds. It means more than I can tell you to have someone to talk to about it.

There are parents and spouses and siblings who help fundraise for cures and research toward better technology and treatment for everyone living with diabetes. They give of their time and treasure to support us. It’s hard to find a way to define love in stronger terms.

Heck, what about the parents who took care their kids every night while they grew up and never stopped caring for them after they’d moved away? And the brothers and sisters who’ve also shown patience, who’ve shared, and treated their siblings like they’re worth every extra effort?

And our friends who’ve hung with us through the best of times and the worst of times. Those friends who don’t abandon you when you’re down and are proud to be your rock when everything around you turns to sand.

There are a number of places where the impact of those who love us weaves through our lives with diabetes. It’s impossible to overstate our gratitude for everything you’ve provided, every adjustment you’ve had to make, and every fight you’ve fought on behalf of all of us. So…

Here’s to the Heroes.

Part cheerleader, part confidant, part warrior. If it weren’t for you, we might still be here. But probably not as well as we are today, even if we’re not so well anyway. Probably not so happy, though we may already know some happiness. Probably not so strong, because in many ways, you’ve allowed us to draw our strength from you.

Thank you.

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Lists and Agendas and Diabetes.

This is the list of tasks I wanted to accomplish last weekend. I know, taxes. I’m not usually a last-minute filer, but after getting them nearly completed a week ago, I needed to get some additional information together before I could send them out.

The good thing about lists is that you can keep track of everything you want to do, or that you want to pick up at the grocery store. Plus, if you’re me, lists are valuable for not forgetting things. I am an unabashed list maker.

That’s where diabetes is different. You can’t make a list for diabetes.

You can make a list of prescriptions or supplies you need to refill. You can list the doctors you need to see this month. But when it comes to the everyday highs, lows, and in betweens of living with this thing on a never ending basis, there is simply no way to plan it out.

I’ve seen the internet memes where people draw schematics to map out their decision processes when their BG is high or low. For many, doing a design like this is cathartic, and for people who don’t live with diabetes, it’s even enlightening.

Speaking only for myself though, it’s neither. That’s not to say I think it’s useless. It’s a great tool. But it’s already been done, and I don’t think I could add much more to it, though it might be fun to try someday.

Also, I remember that there are no schematics, no lists, that can’t get blown away at a moment’s notice, just because diabetes wants to screw with you that day. So while it’s funny to imagine all the twists and turns of our decision-making that happens, the truth is, we often don’t know what’s going to happen during the course of a day with diabetes.

Remember when we read about the costs of diabetes beyond doctor visits and prescriptions? This is part of what they’re talking about. It’s where lives are changed and appointments are missed and meals are adjusted and where we all pay, all of us, everyone living with and not living with diabetes… it’s where all of us pay the cost of a condition that doesn’t care about lists and agendas.

I accomplished everything on my weekend list. That’s the product of a plan, a focused effort, and a diabetes that actually cooperated for once. What galls me is that I have to rely on more than a plan and focused effort to get the job done.

8 Questions.

You know, sometimes things roll around in your head and you just need to get them out so you can let them go. Like these eight questions:

1. Have you ever used your BG readouts to choose lottery numbers? Just me? Here’s the game:

Let the Powerball or Mega Millions jackpots get really high. Then take your BG number from either your CGM or your glucose meter throughout the day and play those numbers. Of course, you have to use just two digits, so if the number is 123 or 223, you play 23. If the number is 84 (the jackpot numbers only go up to about 60), you switch it so you play the number 48.

I’ve never won the lottery with this scheme, but if I did, wouldn’t that make a terrific story?

2. Does anyone ever think that a president who would fire his Secretary of State via tweet would actually care about anyone living with a chronic condition?

Ever?

3. Would you rather have a CGM sensor that you can stop and restart for weeks, or one that requires exactly zero fingerstick calibrations for only ten days? I think we’re going to find out the answer to that throughout the rest of 2018. At any rate, this is the way of the future, so love it or leave it, this seems to be the way we’re going.

4. After hearing the recent news about Facebook not only selling user profile information, but also the ability to access mobile device data without our consent (and don’t try to shame me for this practice by reminding me that I agreed to the terms of service when I created my account around a decade ago)… are you more reluctant to upload all your device data somewhere?

If I were going to run for president, or the senate, or if I would be up for a cabinet post, maybe. But I think my diabetes device data is pretty low on the official russian operative priority list.

5. What’s your next big focus in diabetes advocacy? Is it insulin affordability? Is it learning more about the FDA drug approval process, or finding out about the tricks pharmacy benefit managers play with formularies? There are still many avenues of diabetes advocacy we can pursue, and one amazing place to find out and take action on them all.

If you live in the USA, go to diabetespac.org and download the DPAC app. Use it to join the chorus of caring patients, caregivers, and other Americans who are taking action on these and even more issues in quick, easy steps that will have you feeling great about advocacy without spending every waking hour wondering how you’re going to squeeze it into your schedule. And one of the best things about DPAC is that they’re totally non-partisan. There’s room for everybody.

Use the easy button. Get the DPAC app.

6. If I donate to a JDRF or ADA ride or walk for someone else, but don’t actually participate in any of them myself, am I a bad supporter of those causes?

I happily donate to others’ JDRF or ADA fundraisers. But I’ve never ridden in a JDRF ride. After doing a few ADA rides and paying all or nearly all of the minimum contribution needed to participate each time, I’ve given up on those too. I’m sure they’re still wonderful happenings, and I still have the energy to do them. But at this point, the price of admission is just too high. Right now, I’m okay with helping four or five people reach their goal of participating, instead of helping only myself. Is that wrong?

7. Is lack of appetite a sign of old age? I’m just not the foodie that I once was. I eat far less today than I’ve ever eaten as an adult. If I could eat anything right now… I don’t think I could choose anything. For the most part, I’m just eating for sustenance. I’m not losing any weight, but I’m certainly eating less.

I’m exercising more too, if that matters. But I’ve always been active anyway.

Finally…

8. What should I do on my birthday? It’s next week. It’s not a milestone birthday, so I’ll probably just go to work and come home and be grateful I can still go to work and come home.

I think winter has lasted far too long around here.
 
 
Great… now that I have that out of my head, I can go play those lottery numbers. What have you been thinking about lately?

Be kind. Be supportive.

Do you ever feel like you’ll never be able to catch up? Like, you’re in that dream where you can’t possibly run faster, but you can’t run fast enough?

I think we all experience that sort of thing from time to time. Some people live for that kind of existence… if they’re not struggling to keep up, they think there must be something wrong. Others get overstressed the minute they schedule one meeting to start exactly when the previous meeting is set to end.

Gee… we all react differently to stress. Not exactly a scoop of a story, from my point of view. How we react to stress tells us exactly nothing.

Honestly, we do all react differently to stress, including the fact that some of us don’t even recognize it as stress at all. I think just like diabetes, we all react to stress differently, and we all manage it differently.

And that’s okay. If we had one exact strategy for dealing with the stressors in our lives, you know we’d all be working on it. But most people handle stress with a mixture of dread and resolve, and sometimes it works, and sometimes it doesn’t. There’s no use complaining about the things that get us worked up.

But… and this is a big But… sometimes the stress is too much. Sometimes we can’t just work our way through it. If that’s the case, we need help and we should be okay with seeking it.

Likewise, when someone else is having a tough time of it, instead of just complaining more, instead of judging someone experiencing difficulty dealing with their stress, we should be actively supporting that someone. Helping them feel not alone, maybe reminding them that you’ve been there too, and giving them the space they need to feel like they’re not being manipulated by life like they’re a little marionette.

In the end, it’s not a perfect appointment book or a perfectly clean home or anything else that makes us feel good as much as people do. Let’s remember to be kind this holiday season, but also be supportive. You and your friends and loved ones are well worth the effort.

8 Things: Holiday gifts for everyone living with diabetes.

Hey, how are you? I hope you’re in the middle of a rather stupendous holiday season.

I hope that gifts are in order this year. Whether you celebrate Christmas, Hannukah, or another holiday, giving and getting are AWESOME. So let’s look at 8 holiday gifts all People With Diabetes could really use this year:

1. More support. There are new diabetes diagnoses every day. There are new people waking up, like I did six years ago, realizing their diabetes doesn’t exist in a vacuum.

I hope those people find the hope and support that I found when I found this community. And I hope they pay it forward when they do.

2. Laughter. I can’t tell you how long it’s been since I really laughed hard. I’m ready for something really funny to just knock me out of my chair.

Likewise, I think it would be really great if I could make someone else laugh too. I just hope it’s not because I did something really embarrassing at the same time.

3. Retail Competition for Closed Loop Systems. Honestly, the #WeAreNotWaiting movement, and all of the do-it-yourself systems it has spawned, has taken a bit of the wind out of the sails out of the commercial artificial pancreas designers out there.

Eventually, we know these systems (the iLet, Cell Novo, etc.) will be approved, but whenever we start to see rollout of non-DIY closed loop, I hope it’s not just one at a time. Good, reliable technology is what we need, and we need more than one option to choose from.

4. More knowledge sharing. Here at Happy Medium, I try to do my best to keep you as up-to-date as I can on the latest diabetes happenings, especially when it comes to news out of Washington, D.C., and items I gather from attendance at various conferences, research summits, and symposia.

I would like to see more of that from everyone in our community, or at least a sharing of resources for learning about new developments in diabetes. Not just, “Here’s the group I spoke in front of today”– which is still good, and should be shared– but also an occasional post that says, “I read this interesting thing today”, or “This event is happening in your area”. I don’t see much of that anymore.

5. A couple of diabetes memes. I can’t handle something new every week, but it’s fun when we can get out of whatever rut we’re in and post something on a common theme. Hey, I’m not the only one with good ideas!

I love Diabetes Blog Week, and I loved the social media #MakeDiabetesVisible campaign during Diabetes Awareness Month. Again, I don’t need a prompter all the time, but it might be cool to do a #dblog Check-in Day, or Diabetes Art Day, or No-D Day again.

6. A couple of recipes might be nice too. One of my favorite things to do here is share recipes, but I haven’t done a lot of that lately. Have I shared every recipe I know?

Chances are, I haven’t. Chances are, you haven’t either. Maybe it’s time to search our cookbooks (give credit where credit is due) and family recipes and deliver something new for everyone’s palate to enjoy.

7. Less Uncertainty. Let’s face it… we’ve been through the wringer on this Affordable Care Act thing. Ever since this time last year, we’ve all been worried out of our minds about whether ACA will still exist, and whether it will be as helpful and as accessible as it has been up to now.

We’ve always known it was broken. Damn few of us expected a so-called “fix” that would break it entirely. Let’s stop the uncertainty, congress. Let’s take away the roadblocks toward giving Americans the same healthcare rights available in every other decent nation in the world. Do that, congress, and maybe I’ll use the big C when I refer to you again.

8. More Kindness. Any change, meaningful change, change that lasts, begins and ends with kindness. Empathy. Decency. Change that lasts does not include cheating, lying, or calling people, even elected officials, names.

This gift could also go to some of our friends in the diabetes community, who have been less than friendly with people not living with their type of diabetes, or are fans of one cause but not another. We all want the same thing. Bashing each other to get there, or to get more notice, is a recipe for eventual failure. You might get your way initially. But no one is going to be excited about how you got there, and that will be shown in their overwhelming lack of support for you.
 
 
However you celebrate the holidays, I hope they are full of gifts, however you define them. And happiness, however you define it. Here’s to us this holiday season… may we celebrate many, many more!

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