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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.

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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.

2018, you have big shoes to fill.

Well, it’s been a heck of a year, hasn’t it?

2017 has been the most full, and probably most fulfilling, of my years here at Happy Medium. This year has been quite a bit different from previous years too. Different in a good way.

January started with the beginning of my life on Dexcom, inserting the G5 and employing it as a useful tool in my diabetes management. Even if I complained about sensor and transmitter issues, and having to wear one more thing.

February included participation in the second Diabetes Podcast Week. I really love podcasting, and I wish I had more time to fit it into my schedule. I also shared a few notable quotes, and why they inspire me.

In March, I reported for the fifth time on what is now the JDRF TypeOneNation Summit in Bethesda. They’re getting better at bringing adults into the conversation. I also took the time to remind everyone that Nobody Ever Died from Obamacare.

April 1st marked the March for Health, in many cities across America. I was fortunate enough to be able to speak at the march in Washington, D.C., in the shadow of our nation’s capital. I also shared a story from my personal life that showed me how important it is to support your friends. It wasn’t about what I did… it was about what I learned.

Diabetes Blog Week returned in May this year, and it was wonderful, as always. Also in May, I took time to attend a public workshop at the U.S. Food and Drug Administration. I learned a lot about FDA’s Center for Drug Evaluation and Research, and the drug approval and after-market inspection process.

June brought about the rollouts of the new Accu-Chek Guide glucose meter, and (finally) the Dexcom G5 Mobile App for Android. I couldn’t be happier. I finished up the month with a meeting among diabetes friends, and it reminded me that we need each other now more than ever.

In July, I completed my local 5k run again, and did fairly well for a 55 year old who is a slow runner. I also attended another in the continuing #BeyondA1c discussions, and it was amazing, even if the information shared, at times, felt like I was trying to drink from a fire hose.

August posts included a note on conversations and my reaction to them. “It is always about enlightenment and being more comfortable being myself, and being myself with my diabetes.”

September was a hard month. I went through an unexpected emergency appendectomy, which included a very unexpected complication. Fortunately, I’m all better now.

In October, I shared my new role as a member of Maryland’s Advisory Council on Health and Wellness, and how this new role means I’ll be serving more than just the diabetes patients in my state. I’ll be serving all of the citizens of my state.

In November, I tried to remind everyone that while advocacy is often practiced with a little “a”, the effects of that advocacy can be very big indeed. I also went to a meeting at the U.S. Department of Health and Human Services, where I discovered that I was Enlightened, but Unknowing.

And in December, I’ve talked about doing a trial of the new-to-the-USA Freestyle Libre CGM. And I presented a list of 8 gifts that People With Diabetes could really use right now.

I would be remiss if I neglected to mention the two wonderful Diabetes UnConferences that took place in February and October. Or the fact that we’ve sent out another 15 or 20 Champion Athlete With Diabetes medals. These are feel good stories every single time. I also love hosting the Diabetes By The Numbers podcast, and hope to bring you more episodes in 2018. And thanks to Cherise Shockley and the followers on Twitter for the privilege and fun times shared while hosting some of the #DSMA chats throughout the year.

Thanks also to Christel Marchand Aprigliano for the honor and privilege of representing DPAC at Friends for Life events in July and October. We learn from heroes. We are supported by friends.

This is where I express my gratitude to you for visiting this space on a regular basis… I could do this without you, but it wouldn’t be as meaningful or as fun. Also, I hope that you have had a full and fulfilling year too. Finally, I want to strongly express my desire for all of us to work toward less division, less cost, more access, more support, and mostly, less burden of living with diabetes.

Goodbye 2017… you were a whirlwind, but a remarkable year.

Hello 2018… you have some pretty big shoes to fill.

More people, more ideas.

We all know and understand that the cost of diabetes is getting cray-cray. Our Wednesday #DSMA Twitter Chat on September 21 got pretty deep into this discussion, and it wasn’t everything that was on the agenda to discuss that night, but it quickly became the single subject of the chat. Sometimes, important issues just take precedence.
dsma1
Our frustrations lie in a lot of places: drug companies, device makers, insurance companies, “pharmacy benefit managers” (I think I will always have quotes around that term—they don’t deserve to be taken seriously), and even our government, who, as I’ve heard so many times, seems to be just “checking our box”, but not really doing as much as they can to help us.

So there’s a lot of blame to go around. What are the solutions?

I’m not sure I have the perfect answer to that. I know what I would like to see happen. Will what I would like to see happen… actually happen? It hasn’t yet, although it has in small ways. But I don’t know if I have the ultimate solution. Or the Next Great Idea. I also know that often, there is more than one way to reach a goal. But…

There have to be certain elements involved in a successful campaign to “Take Back our Diabetes”, to paraphrase certain U.S. political commentators. To me, those elements seem to be, in no certain order:

– A clear Demand (let’s stop calling it an Ask, okay? It’s time to start demanding what we want)

– Enough people willing to demand what we want. Hint: it’s a hell of a lot more than we have now.

– Enough people willing to keep demanding, especially when we get stonewalled. Let’s remember the next diagnosis, the next family living with diabetes. Even if we’ll never see our success, we can keep demanding so future generations won’t have to work so hard. We want them to have it better than we do. I want to always remember this.

– Lots and lots of new ideas. As I mentioned in the Twitter chat, more ideas increases our chances of coming up with great new ideas.
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– Someone (hopefully, more than one someone) who is well connected and sympathetic to our cause. This could speed things up a lot.

That’s my list so far. I realize I’m not exactly the Einstein of social activism.

To be fair, there are companies providing assistance to people who need it… ALWAYS be sure to check the website for the drug or device you’re using (or interested in) to see if you might be able to qualify for a little help. Even insurance companies have resources to help deal with claims issues. Your state’s insurance commissioner can often be a great place to voice your concerns. All this can be hard sometimes (PWDs have enough to deal with already), but at least it’s something.

That said, it’s fairly clear that 1) We have major issues regarding diabetes affordability and access; and 2) Governments/Companies/Insurance/”PBMs” will need to be forced into action to help solve pricing and procurement problems. That will only happen when it becomes clear that this is a public health and safety issue for everyone living with diabetes and not living with diabetes, and it will only cease to be so when we get what we demand.

Feel free to fill in the blanks.
 
 
Hat tip to Meri at Our Diabetic Life for her inspiring posts last week.

And hat tip to Renza at Diabetogenic for her post too.

Talking about Cousin Spammy on DSMA tonight.

I’m not sure I can define diabetes spam exactly… but like Supreme Court Justice Potter Stewart once proclaimed regarding pornography, I know it when I see it.

We’re going to be talking diabetes spam on the DSMA Twitter Chat tonight. What does it look like to you? How does it make you feel? How do you handle it? And many more aspects of what spam does to our already overworked eyeballs.
SpamLunchbox
From ridiculous snake oil cures to workout ads that promise to “reduce diabetes” (ummmm… it’s still DIABETES), we’ll be riffing on what really bugs you regarding quack dietary supplements and what your co-worker heard on the TV last night. We’ll talk about what everyone is doing about the stupid e-mails they’re getting, and maybe a little about what we’d like to do about all these snake oil remedies and the people who tout them.

Diabetes spam is kind of like the stoner cousin at the family get-together. Eating all the non-carby good stuff you brought while leaving your aunt Ginny’s undercooked brussels sprouts for you on the buffet. Eyeing your significant other with a little too much gusto. Borrowing a fiver while promising to get it back to you next week, and finishing up with “We gotta hang out more often, cuz!”. Yeah, right. I’m not a kid anymore, cuuuzzz.

So catch up with me on Twitter tonight (all the details are below) and we’ll compare notes, laugh a little, and generally dis’ about cousin Spammy. He’s got it coming… let’s serve it up beginning at 9:00 eastern time in the USA.
 
 
Living with diabetes? Living with someone living with diabetes? Join us for talk, support, encouragement, empowerment, and more during the DSMA Twitter Chat every Wednesday night at 9:00 Eastern time (USA). Follow the @DiabetesSocMed Twitter handle and/or the #DSMA hashtag and join the conversation!
I also find this link via tChat helpful.

The DSMA Twitter Chat is sponsored by the Diabetes Community Advocacy Foundation, Cherise Shockley, Founder and CEO.
 

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