Imperfect Panreas - Appreciation for Life – Frustration with Diabetes
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Imperfect Panreas - Appreciation for Life – Frustration with Diabetes
Home
Diabetes
Life
About
Contact
GLOSSARY: DIABETESPEAK
  • Home
  • Diabetes
  • Life
  • About
  • Contact
  • GLOSSARY: DIABETESPEAK
Diabetes

DIABETES ORGANIZATIONS AND ORGANIZED DIABETES FOLK

It’s been a month of announcements from diabetes organizations. On July 1, “Big Red” made an announcement that their CEO will be stepping down at the end of the month and the search is on for a new CEO. This morning, JDRF made an announcement that their CEO was gone and a new one is coming in. Either way you look at it, this is big news. But the fact that these announcements happened within three weeks of one another is no coincidence. It shows there’s something larger going on.

This is, of course, pure speculation. I don’t have much of an inside track to either organization*. But I see it like this: These are both fundraising organizations. If fundraising were going well, no organization would be inviting their CEO to consider other opportunities. So this tells us that fundraising is not going well. And chances are that if you or someone you’re close to has diabetes, you’ve done some fundraising for one of these organizations in your time. So what’s changing?

I’ve worked for many health-related fundraising organizations over the last ten years and have seen a shift in what works and what doesn’t. Terms like “engagement,” “transparency,” and “social” have crept into the philanthropy vernacular – and for good reason. These days, we want to do more than simply give money. We want to be more involved and offer not only our finances, but also our smarts and our skills. We also want to know more about where our gifts are going so we can believe in our contributions. We want to be involved in the entire process. Why? Because we care. That part hasn’t changed, but the ways in which we express that care have.

Why is this happening? Oh, I could go on and wax philosophical about empowerment through social media or crowd sourcing, but those would just be theories. I don’t have the answer.

What I have seen is that some organizations are slow to adapt to these friendly donor demands. They found a system a while back that worked, so they continue to use that system to this day with minimal adjustments (e.g. they switched from “write a letter to your coworkers to ask them to donate to your walk!” to “send an email to your coworkers to ask them to donate to your walk!”). Sure, they’ll change up the messaging around this tactic to focus on their advocacy work or a particular person’s story. But too often our involvement with them is chalked up to dollar signs.

I do not say this to discount sharing our personal stories or volunteering or even our fundraising. I just think that things are shifting more quickly than many organizations are able to keep up with. And when they come up short, their CEOs get the boot. And I don’t have a solution for this, but I hope that the organizations recognize that the world around them is changing and evolving beyond marketing that may have been successful once. As for the two CEOs, I would love to buy them a beer and maybe set them up in a karaoke bar together to, well, (I cringe to write this, but…) let it go.

On a brighter note, let’s talk about organized diabetes folk and #dblogcheck. This is something my better half came up with last year and is encouraging folks to participate in tomorrow, Tuesday, July 22. You can read more here. Or here. Or, better yet, with gifs here.

The basic concept is this: You read diabetes blogs. So why not at least let people know? Leave a comment, anything you want, simple as “check” to let them know you’re reading. Happy checking!

*Yes, I worked for “Big Red” and have had many a pleasant conversation with outgoing CEO Larry Hausner, even after I left my position there. I’ve never met former JDRF CEO Jeffrey Brewer, but he seems like a cool guy. I have donated to both organizations during the tenures of these two CEOs.

July 21, 2014by Dayle
Diabetes

THROWBACK THURSDAY: WHEN I BLOGGED FOR “BIG RED”

I’ve realized over the past week since I launched this blog that my statement about coming back to diabetes blogging may only make sense to some folks. And even of few of those who remember where I blogged before may have some questions. And so, in light of Throwback Thursday, I’d like to share this little story:

Once upon a time (2008-2011), I worked for a very large, very well-known national diabetes organization. SUMone nicknamed this group “Big Red” and I’ll just stick with that. While I was there, organizations were just starting to venture (well, tip-toe, really) into social media and I was lucky enough to lead the charge for Big Red.

First there was Facebook, then there was Twitter. We could not ignore the blogosphere and at last, after about 18 months of preparation, we finally launched a national blog. And I wrote it. Not as a faceless corporate logo, but as myself. I’m still proud of that – being able to manage a corporate blog from the first person perspective as someone living with type 1 diabetes.

Of course, there were a lot of people who asked “If you have type 1 diabetes, why would you work at [Big Red]? Don’t they mostly focus on type 2 diabetes?” I knew it was a valid question, but it included the underlying assumption that they focused on type 2 which is not entirely true. My approach echoed the idealistic “be the change you want to see in the world,” but I was okay with that. I got their blog to show the face of someone with type 1, so that was something, right?

It was. It was great. But somewhere between here and here, I hit a major wall of burnout that spanned from my professional life to my own diabetes management. This, combined with other elements of the job that I will not write about, inspired me to find another job. And I did – with the United Nations Foundation. And that was super cool, too. (I even blogged a little for them, too!)

And so, yes, I was a blogger. And yes, it was for a corporate blog, but it wasn’t all PR propaganda. Most of it was completely sincere and I loved working on it. But when it was time for me to move on to other things, I couldn’t even begin to think about diabetes blogging again. It took a full three years for me to come back to this. In the past week, I’ve been welcomed back by some old faces as well as some new ones and for that I am grateful.

June 26, 2014by Dayle
Diabetes

ACE Inhibitors: A tool for kidneys on an early retirement plan

Last week when I wrote about the variety of diabetes paraphernalia Chris and I have had around our home over the last few years, Scott E. asked about ace inhibitors. My response was what it’s always been – that they are used for high blood pressure, but I take them for the off-label use of protecting my kidneys. Yet, when I thought about it, I couldn’t answer how they are protecting my kidneys, and that bothered me. So I  (someone who never took a chemistry class) did a little research, and here’s what I found:

Angiotensin-converting-enzyme inhibitors, commonly known as ACE inhibitors, are a group of medications that do exactly what their name implies: they block the enzymes that convert angiotensin. More specifically, they block angiotensin I from changing into angiotensin II.

Blah blah blah… But what does that mean?

When it comes to blood pressure, your body can sense when your blood pressure gets low and in response it produces an antidote in the form of renin, which is an enzyme that sticks itself onto angiotensinogen, which is a protein in blood plasma (liquid stuff in blood). While I cannot confirm this, I’m pretty sure that angiotensinogen may be named after a popular Latin tongue twister. When these two things (renin and Latin tongue twisters) combine, they become angiotensin I, which apparently does nothing except get inspired by angiotensin converting enzymes to become angiotensin II, which makes blood vessels narrower. When blood vessels get narrower, the pressure inside them goes up.

In addition to a boa constrictor-like effect on your blood vessels, angiotensin II causes the kidneys to retain fluid (fluid that should have been released as urine is instead becoming plasma in your blood). This increases the volume of the blood, which also makes the pressure inside the blood vessels go up.

So, the primary function of ace inhibitors is to block the angiotensin converting enzymes from turning angiotensin I into angiotensin II, essentially stopping the body from making the blood vessels narrower.

Right… but what does that have to do with my kidneys?

First the basics: kidneys clean your blood and throw the waste and extra fluid into your bladder. But when blood glucose levels are elevated, kidneys have to work harder and their filters get damaged, which often leads them to start making plans for early retirement. This is when protein gets released into your urine and is known as microalbuminuria (because that’s so much easier to say than “protein in your pee”?). This is why many of us with diabetes have to pee into a cup every now and again (or worse, collect 24 hours worth and store it in the fridge. Ew!).

Back to ace inhibitors: when they are at work, blood vessels are more relaxed and blood flows through them more easily (I imagine this to be like tubing vs. white water rafting, but I don’t do water sports, so that might be a bad analogy). This includes the blood vessels that take blood to the kidneys for cleaning, but the lower pressure in these vessels means there is also lower pressure in the filtration (or cleaning) process. This is a good thing. Ace inhibitors also increase the surface area for filtration, allowing the kidneys to do their jobs more easily. This is another good thing.

These good things, combined with the lowered blood pressure, are what protect the kidneys from diabetes-related damage. Taking an ace inhibitor is a preventative measure for those cute little bean-shaped organs that magically separate your pee from your blood.

So maybe you learned something today? I certainly did. Thanks goes out to the innumerable sources I consulted while writing this piece.

June 25, 2014by Dayle
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About me

Health/medical writer, health PR professional, dog lover, cat owner, photography enthusiast, woman living with type 1 diabetes. Believes the word “diabetic” is an adjective – not a noun. Lover of laughter. Questioner of things. Goes by the name “Jane” when ordering coffee. Secretly likes serial commas, but limits them to personal writing.

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