Tag Archives: dsma

Uncertain, but Hopeful. Vulnerable, but Resilient.

Make no mistake… there are reasons to be frightful as we near the end of the year. When it comes to diabetes, there is more than one reason to be mad, outraged.

I saw some of that in our #DSMA chat last night.

We talked about what 2018 has been like, what headlines grabbed our attention, and we made some predictions for 2019. Not everyone’s answers reflected hope and inspiration. In fact, nearly everyone, at one time or another, expressed disappointment, anger, or sadness.

But there was a lot of inspiration too. New jobs, excitement over meeting new diabetes friends at conferences, school successes, and a lot more. Seeing this helped reinforce something I’ve known, but have forgotten at times this year.

People With Diabetes are strong. We have more fortitude than even we ourselves could have imagined at diagnosis. We’ve overcome diagnosis, DKA, insurance denials, co-pays, hypoglycemia, stigma, discrimination, and a hundred other things that would try the soul of most healthy individuals.

We continue to pursue our goals, undaunted by doubters and uncooperative pancreases. We give our time and our money as if we had extra to give (truth: we don’t). We champion the causes we’re most connected to, and we champion the individuals that truly don’t have any extra time or money to give right now.

We educate, on a formal and informal basis. We learn constantly, formally and informally, because the nature of our condition and its care is constantly changing. We’re resilient, because what other choice do we have?

I might have forgotten some or all of that amidst all the craziness that 2018 has dished out. But Wednesday night reminded me that even though we’re vulnerable because of a failed organ, we’re certainly not finished yet. We’re still capable of great things.

And 2019 promises even more. Many of our participants in the chat talked about going beyond talk and plans, and moving toward real, concrete action on things like increased access to affordable insulin here in the USA. And more developments in closed loop technology. And more availability of real, meaningful support of those newly diagnosed.

I was also encouraged by how much everyone in our diabetes community is encouraged by others in our diabetes community. How much those human interactions, either online or in person, mean for our health and well-being. That benefit cannot be overstated.

Personally, I plan to continue some of the crusades started in this year and previous years. But I also plan to change a few things, just because I don’t want everything to be the same all the time. And I want to find more time to help and laugh with those in this community who mean the most to me.

Sure, we still have challenges. Diabetes itself challenges us every day. But we have hope. And a brain. And a heart. And courage. And empathy, which is what the last member of the group in The Wizard of Oz received before their part was edited out of the movie.

Okay, I was kidding about that last part, except the empathy. Empathy is important. And so are you. There is a lot for us to still worry about… we all know that. But we have each other. Let’s use our amplified voices for all the good we can, for us and for the ones who need us the most.

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Holidays!

I just put the exclamation point on that headline for fun.

Let’s face it… the holidays can sometimes be less than fun. Families, things to do, gifts to buy (if we’re lucky). Also, if we’re unlucky, we have family and company and religious get-togethers, the diabetes police to deal with, and the stress that comes from focusing on blood sugar while we’re trying to focus on those we care about most this time of year.

So let’s talk about that. But let’s not just talk about this time of year… let’s talk about all the holidays.

I’ll be hosting the weekly #DSMA Twitter chat this Wednesday night. Let’s talk about all of the holidays that we celebrate through the year, and the ways they may or may not influence or be influenced by our diabetes.

The discussion will involve diabetes in some places, and in other places, just life, not specifically diabetes. Look at it as a chance to learn (or even ask) about holidays in other countries, or other cultures. Feel free to share what makes your favorite holidays great, from a diabetes and non-diabetes perspective.

Let’s take some of the stress out of, again, all the holidays, Wednesday night at 9:00 eastern time (US). To follow along, follow the @DiabetesSocMed Twitter handle and the #DSMA hashtag.

Diabetes Awareness Month. There, I said it.

Welcome to November 1, the beginning of another Diabetes Awareness Month, culminating (oddly enough, in the middle of the month) on World Diabetes Day November 14.

I get the “I’m tired, I raise awareness all year long, every day is Diabetes Day to me”, etc. comments. People wouldn’t be saying those things if they weren’t true. But instead on focusing on all that, I thought I might take a moment and talk about a few of the nice things happening this month too.
 
 
To begin with, November marks the five year anniversary for our Champion Athletes With Diabetes program. Scores of medals awarded over the years, to athletes in multiple states, and in multiple countries on four continents.

I’m so proud of our medal winners, and I’m extremely eager to send more medals in recognition of sought-after athletic goals, large and small. CLICK HERE to find out how to get yours.
 
 
November is always a great time for #DSMA Twitter chats, and on that front, I have bad news and good news.

The bad news: No all-day #DSMA chat on World Diabetes Day. I know, bummer… but none of us has the time right now to coordinate moderators, topics, and scheduling in order to get it done. Sorry about that. Hopefully, it will be back next year.

The good news: World Diabetes Day is on a Wednesday, so we’ll be chatting for an hour anyway. In addition, I hope you’ll join me as I moderate the #DSMA chat on November 7 and November 28. Join your friends and make some new ones, Wednesday nights at 9 PM eastern time here in the USA, or whatever time that is in your counrty. Follow the @DiabetesSocMed Twitter account and the #DSMA hashtag to participate.
 
 
Finally… if you check my blogroll on this page you’ll see I’ve added a new link, to MakeDiabetesVisible.com. Created by Mike Durbin, it’s a place designed to curate things associated with the #MakeDiabetesVisible hashtag. Here’s the challenge, from Mike himself:

“I invite all of my friends living with any type of diabetes to join me in this challenge. 30 days, 30 photos, ALL types of diabetes. Any social media platform. Facebook, Twitter, Instagram, whatever.

If a picture is worth a thousand words, imagine how much we could all say about life with diabetes in 30 days.

Please share, use the hashtag, and let’s #MakeDiabetesVisible”

Are you in? I am! Let’s #MakeDiabetesVisible in November!
 
 
So… what are you following, participating in, or initiating this month? Please share here!

Readiness realities.

I can remember when this blog was new, and I would write about anything and everything that inspired me, even a little bit, almost at the very moment that it inspired me. I would often participate in the weekly #DSMA Twitter chats and find something interesting to write about (see: My Week With Celiac).

That hasn’t happened for some time. However, last week’s chat (moderated by Chris Memering) did inspire me to think about, and share, my guidelines on emergency preparedness when it comes to diabetes.

Let’s get a couple of things out of the way here, right at the very beginning: I am not an expert at preparing for emergencies. Also, when I talk about emergencies, I’m not just talking about earthquakes or hurricanes or zombie apocalypses. You’ll want to prepare for those like you always would: plenty of extra food and water, ice, garlic and crosses and whatever else you want to have on hand just in case.

When I talk about emergencies, I’m also talking about the things we don’t always consider: specifically, medical emergencies, either our own or those affecting those close to us. I had an emergency appendectomy last year. A week and a half ago, The Great Spousal Unit took a terrible fall down a flight of stairs. What about those situations?

Some experts might disagree with these ideas of emergency preparedness. But there are two things we do that have been very helpful…

1. That diabetes stuff that I always have to put together when I travel? The extra insulin, the extra infusion sets, CGM sensors, insulin pens and pen needles, etc… I keep that at the ready every single day at home. If I have to get out of the house quickly, I can get it together in less than a minute.

I won’t be set for months with this stuff, but I should be okay for at least a couple of weeks if necessary. When I was in the hospital with a bad appendix (and later, recovering from same), I didn’t have to ask anyone to gather this and that for me. I just said, “Get the box, the insulin cooler next to it, add insulin, and bring it to me”.

2. I have all of my medical information written down. This includes the model of insulin pump I’m using (and the serial number). It includes all of the prescription drugs I take on a daily basis. It includes models of CGM sensors and infusion sets.

It also includes the names and phone numbers of my entire medical team: primary doctor, endocrinologist, etc. Even if they don’t need to be consulted in a crisis, they need to be informed.

I keep this information on my iPad at home, so it’s easily mobile if need be. But I also have it printed out, in case I can’t keep the iPad charged, it gets broken somehow, or no one thinks to try to access the information there.

Hey, I admit that I’m not the best at preparing for an emergency. These two tips may not seem like much. But they give me peace of mind, or at least one less thing to worry about when it comes to managing diabetes, and managing life, through an emergency.

How do you talk with loved ones about diabetes?

Relationships. We’ve all got ’em, of one kind or another. Parent-child, siblings, significant others, Friends, Romans, Countrymen. And when it comes to diabetes, communicating with the ones closest to us is not as straightforward as it may seem on the surface.

Let me ask you: Have you ever held something back from a loved one, or if your loved one lives with diabetes, have they ever held something back from you? Maybe what was conveyed was not the truth, the whole truth, and nothing but the truth. Maybe a detail was left out here or there.

Hey, you’re not alone. I’ve done it too, for differing reasons. I’ve left out details of a really bad low I had when I was traveling by myself. If my blood sugar was 65 mg/dL before lunch, maybe I said it was 95 mg/dL, even though the 95 was actually an hour and a half ago.

You might not know this, but that’s really hard for me to do. I tend to overshare, especially about my diabetes. The fact that I’ve not shared everything is a sign that I’ve taught myself to when to share and when not to share with the one person I should be willing to share anything with.

Excuse me while I pause for a moment of guilty reflection…

I worry sometimes that this means I’ve given up on getting The Great Spousal Unit to understand certain aspects of my diabetes. I’m sure there’s also an element of “I don’t want to worry her too much”, but let’s focus on the understanding right now because I want to ask:

How do you do it?

How do you decide what is worth sharing, what should be kept to yourself, what is important for your loved ones to know and not to know?

Do you ever get burned out talking about another high or low, another bad pump site, another failed CGM sensor?

What’s the dividing line between Tell and Don’t Tell?

Sure, if it’s important for Maureen to know so she can act on my behalf when I can’t speak for myself, I have to tell her. If it’s something that happened and she’s no worse off for not knowing about it, it’s probably okay to keep it to myself.

But there’s a lot of gray area in between there. And I’ve been doing a lot of personal examination lately to try and determine if I need to revamp my communication strategy with those closest to me.

It’s easy to get complacent when it comes to sharing, what we share, and how we share it. It’s easy to believe we’re sharing exactly the right amount at the right time, with the right person. But every once in a while, it’s okay to do some self-examination and reconsider how we’re talking to the people who mean the most to us.

We’re going to be covering this very topic tonight at 9:00 ET(US) during the weekly DSMA Twitter Chat. If you’d like to talk about it, follow the @DiabetesSocMed Twitter account and look for and use the #DSMA hashtag.

Join us, and let’s get a handle on this communication thing.

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