It can’t be all diabetes all the time.

A unique thing happened last week. For the first time all year, I took an extra day off of work for something that didn’t involve diabetes advocacy, service to the community, or going to a conference.

So we literally took off… we left to spend the weekend in nearby Virginia.

We visited some of our favorite wineries. We enjoyed the majestic scenery of the Shenandoah mountains and the surrounding valleys. Most of all, we relaxed and let the other side of our brains take over for a while.

I’ve been involved in so much this past year, more than I ever thought I’d be involved in when I found this community about seven years ago. But it can’t be all diabetes all the time. I was so grateful for the chance to (mostly) unplug and recharge.

And since this is a personal blog (and sometimes I forget that), I thought I’d post a few photos from the weekend, in the hope that you will find it relaxing too. Enjoy the rest of your week.






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Language I can appreciate.

In a moment of complete boredom last week, I actually Googled the word “diabetes”. You know, just to see what would come up.

Fortunately, the top search results were primarily from diabetes organizations here in the USA, and from various diagnosis/doctor websites. In all those cases, the groups devoted a page, or part of a page, to describe what diabetes is.

So, because I like a little adventure now and then, I decided to check out all those descriptions. Well, not all, really. In fact, I looked at about ten of them. I didn’t want to be too adventurous, after all.

Far and away, I thought the best description belonged to the National Institute of Diabetes and Digestive and Kidney Diseases, or NIDDK, because I can never remember National Institute of Diabetes and Digestive and Kidney Diseases.

NIDDK is a division of the National Institutes of Health here in the United States, and they do a tremendous amount of work in this area. They are among the most important of government workers dedicated to diabetes research.

I liked their description because, first of all, they described diabetes in succinct, easy to understand terms. I also liked this little bit they threw in too:

“Sometimes people call diabetes “a touch of sugar” or “borderline diabetes.” These terms suggest that someone doesn’t really have diabetes or has a less serious case, but every case of diabetes is serious.”

The description goes on to mention the most common types of diabetes, Type 1 and Type 2, and also has links to other forms of diabetes like monogenic diabetes (like MODY) and cystic fibrosis-related diabetes. Most descriptions online leave these out completely.

The page also lists the latest statistics on the prevalence of diabetes in my country, and links to what I think are important things to remember if you live with diabetes.

For now and future reference, you can find the full description HERE.

It seems we spend a lot of time these days noting when people get the facts wrong about diabetes. Just as important, I think, is noticing when we see the facts clearly presented as they are, in language that nearly everyone can understand. Trust me… it’s worth the bookmark.

Diabetes and the Gig Economy.

The Gig Economy… currently, one of my favorite buzzwords (not), along with Blockchain (not).

According to a McKinsey & Company report from almost two years ago (and that’s a lifetime these days), 20 to 30 percent of working age adults in the United States and Europe spend all or part of their work week as part of the Gig Economy. That’s over 160 million people.

The report also notes that technology improvements are primarily responsible for driving innovation and creating new jobs for people like Uber drivers, Etsy entrepreneurs, and YouTube channel stars, among others. Yet it also notes that only 15 percent of “independent workers”, as they call them, are actively engaged on digital platforms as a part of earning their income. I find that 15 percent number to be suspect, and for what it’s worth, I’m thinking it must be much higher than that.

Anyway, this is a diabetes blog, and you’re probably wondering what the heck this has to do with diabetes. Does the Gig Economy have anything to do with diabetes at all? The answer, as in so many things, is Yes and No.

Look, there are many people working independently to improve the lives of people living with diabetes. There are people working independently to create and maintain their own closed loop AP system. There are those working on better products, better apps for us to help track our diabetes. I even know people who did crowdsourcing to help fund their book launch. Heck, I’m blogging independently, and that certainly seems like work sometimes.

The thing is though, almost everyone involved in diabetes-specific independent work is doing it for absolutely no money at all. We’re performing the Gig without the Economy. I don’t mind that so much myself, but it’s also why it’s been quite a while since I agreed to write for a company-sponsored website. If I’m going to work for free (like I do here), I’m going to do what I like, when I like doing it.

Those DIY #OpenAPS experts? They’re not taking the time to set up and maintain their systems so they can make some extra money. They’re doing it for quality of life, for themselves, and their families. And frankly, some are helping others do the same thing without ever seeing an extra dime.

Because diabetes, despite all the technological advances of the past 15 years, still relies on the individual for success. We can’t farm the work out to someone else to do in the evening or on weekends, or when we’re sick or we’re on vacation. We can’t hire anyone to insert a CGM sensor or count carbs or inject insulin. Oh, if only we could. We could make a fortune moonlighting, while others could unplug for a much-needed rest.

To the extent we’re involved in the Gig Economy at all, for most of us, it’s so we can earn a little extra in order to afford supplies, drugs, or a trip to a conference that allows us to learn and grow and spend time with others like ourselves.

You see, we already have a gig. It’s called staying alive. Our economy revolves around getting enough money put together to be able to afford to stay alive. We’re good at our gig because we have to be. We work hard at it so we can maintain a life, not build a lifestyle.

Framed.

They say a picture is worth a thousand words. We should all be so lucky.

After looking at my most recent headshot (thank you Tara Polcaro), I started to think: if someone was going to write a caption under my photo, what would it say? And how would I feel about that?

Would they say I’m an advocate? I’ve been involved in a lot of diabetes advocacy over the last few years, so I think that would be okay. But… would I feel I’m the kind of advocate someone says I am? I don’t know.

Would they say I’m kind? Being kind is a big deal, especially these days. Treating someone like they matter is important. If someone would say I’m unkind, that would hurt. I would try to fix that about myself.

Would someone think I was worth knowing? Should I care if someone thought I was worth knowing? I care if you want to be friends, or if you want to talk about an issue together. If you don’t, then I guess you don’t think I’m worth knowing anyway.

It seems I have a lot more questions than answers.

I’m at a point in my life and career where I care more about substance than about recognition, more about the kind of person I am than about the accolades. I never imagined I would feel this way about things, but here I am.

I’m not one of those people who says, “Screw what anyone else thinks… it’s what I think that matters!”. Really, both opinions matter. I need to be self-examining enough to know if my heart is in the right place… vulnerable enough to ask for help when I need it… strong enough to listen when criticism is shared.

And smart enough to recognize when people are full of shit. Just thought I’d add that in.

In the end, I have to be happy with who I am; and continue working to be the kind of person I want to be in that caption.

Truth be told, I don’t really like the idea of being framed. Like my diabetes, the definition of who I am changes almost daily. I’m okay with saying my caption should change constantly. What matters is if I’m headed in the right direction, wherever that might be.

Like these links: T2 love, diversity, and The Social Diabetes Project.

It’s been a while since I’ve shared what I found in the Diabetes Online Community, so I thought I would make this Thursday edition of Happy Medium about some of the other great writers and advocates out there. Ready? Here we go:
 
 
First of all, I don’t give enough T2 love via my blogroll.

I need to rectify that.

So I’ve added some links to fabulous Type 2 advocates and writers this week. Here are two:
Corinna Cornejo at Type 2 Musings
Bea Sparks at The Type 2 Experience

Here are two more Type 2s, who happened to sit down and talk recently about their experience with the Freestyle Libre CGM. Here are the links to their stories:
Phyllisa at Diagnosed Not Defeated
Sue at Diabetes Ramblings

You’ll find Phyllisa and Sue’s blogs in my blogroll in the future, and I’m feeling pretty good about that.
 
 
The other thing that’s been missing from my blogroll has been diversity. So I’m going to try and do something about that too, by adding Phyllisa and these super advocates:
Ariel at Just a Little Suga’
Mila at Hangry Woman

Ariel has a great take on life, and I love reading the stories she shares. Mila’s recipes are definitely bolus worthy and drool worthy.
 
 
Finally, I can’t leave you today without sharing the link to The Social Diabetes Project: 2018. Written by Kerri Marrone Sparling, it’s an in depth look at the history of the Diabetes Online Community, the rise (and leveling off) of diabetes blogging, all of the various platforms where patients and advocates have interacted in the past and interact today, and terrific viewpoints from people who have been there for all of it. When you have a break in your schedule, or even if you don’t, this is well worth your time.
The Social Diabetes Project: 2018
 
 
That’s all for now, though that should keep you busy for a bit. I hope you’re enjoying your week. Remember… we’re always better when everyone is included.

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