The Facebook Group phenomenon.

I’ve been added to about seven different Facebook groups lately (no, wait– it’s actually eight). All are diabetes or health care advocacy related. Is it me, or is this becoming a thing?

Sometimes, it’s because I’m attending or have attended a conference, and the organizers created a FB group for it. Others have been due to something common that the group’s creator wants to share and have shared within their group.

When I’m added to a group, I get a little imposter syndrome, like I do with nearly everything else. Why do they want me in their group? But I get over it kinda quickly. Then I’m left with: do I participate, lurk, or ignore it altogether?

I’m a Facebook user and have been for years, but I think it’s safe to say that I consume a lot more content than I produce. So already, I’m mostly on the lurking side.

Not that I’m shy online. But I’m careful about my online (and offline) reputation, and that makes me careful about saturating the internet with things that I might be embarrassed about sharing in years to come. So I err on the side of caution.

Plus, I look at FB groups with the same lens as I look at individual FB users… all of them are different. They have different focuses, and they appeal to different constituencies. Nothing wrong with that. I see that as something that makes the overall Facebook community better.

But when I consider posting to a FB group, I take into account the things that make that group unique. And with so many different groups covering so many different topics, I feel like posting to each one would mean I’d have to turn on a different personality each time I post to another group’s feed. That’s a lot of work for something that’s supposed to be fun. I just want to be me… be authentic.

I also have to manage my settings, every time I’m added to a group. Do I want notifications? Which notifications? Do I want to add the group as a favorite? Do I want to leave the group entirely? That’s extra work too.

I like being a part of these groups. I want to hear what people have to say about a topic. Sometimes I learn something new. It’s always worth hearing another perspective on something that I have in common with the users in these groups. Once in a while, I have something important to say too.

However, I have a high regard for people, individual people that I can have a one-on-one connection with. And when half of my personal FB feed contains posts from users, and half are from groups, I don’t think it’s hyperbole to say that the Facebook Group phenomenon has reached its zenith (a zenith is a peak– really, I just wanted to use the words hyperbole and zenith in the same sentence). Or I need some new Facebook friends. Recommendations are welcome.

Nevertheless, keep creating those Facebook groups, people. It may not seem like I’m there all the time, but I’ll be reading. Good luck.

Advertisements

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?

Diabetes By The Numbers: Grainne Flynn

Diabetes By The Numbers is BACK!

Thanks to everyone who waited patiently while I worked to retool the podcast. It took a while, but I am happy to be sharing another interesting conversation with you.

Today I’m speaking with Grainne Flynn, who is a passionate writer and diabetes advocate living in the Republic of Ireland. I’ve been reading her blog, Blood Sugar Trampoline, for some time, and I got to meet her in person last October at the joint Diabetes Sisters/Diabetes UnConference get-together in Alexandria, Virginia.

Did you ever strike up a conversation with someone and instantly feel comfortable? That’s how you’ll feel hearing Grainne. We talk about Blood Sugar Trampoline, the amazing Thriveabetes conference just completed… and she even shares her three must-visit places on the Emerald Isle. I hope you enjoy our conversation.

And thank you so much for listening. Again.

DBTN

Reference Material – Click below for more information on this topic

Grainne Flynn writes about her life with diabetes at her personal blog, Blood Sugar Trampoline:
BloodSugarTrampoline.com.

Grainne is a co-founder of the diabetes empowerment organization Thriveabetes, which works to foster education and connections in the Republic of Ireland, and hosts a yearly conference:
Thriveabetes.ie

Advocacy: You’re invited.

When it comes to diabetes and advocacy, it’s interesting to note that the one thing we might all have in common (other than a messed up pancreas) is that we’re all different.

Some people are dedicated to connecting others, either because it’s what they want to do, or because they see a need and want to do something about it. To that end, Cherise Shockley’s @WOCDiabetes Twitter account serves both purposes. It connects women of color living with diabetes so they have a place to share common stories, connect with one another, and feel like they’re not alone.

Some advocacy organizations want to focus on research, while others want to focus on policy and education. They all serve a purpose. But they’re definitely not all the same.

There are non-profits like Tidepool, which provides a platform for people to upload their device data and other important information, and then share that with their health care team, and also share it anonymously for research. That’s a lot for one organization.

There are #OpenAPS groups all over the country, helping people put together their own closed loop insulin delivery, even before any industry-developed options are even approved by the U.S. Food and Drug Administration. And non-profits like Bigfoot are using their talents to develop solutions that could make our lives even better. Where would we be without the inspired leadership these groups provide?

There are individuals who participate in clinical trials, sometimes multiple clinical trials, who often thanklessly help advance research into treatments, drugs, and devices designed to make our lives better. You’d be hard pressed to find a more noble endeavor.

And there are still thousands of us out there blogging, podcasting, and using other social media to tell our stories and the stories of others living with and affected by diabetes. The result of all this output of storytelling is increased access to information, viewpoints directly from the patient, and connecting others who are living the same kind of existence.

Where am I going with this? I want you to know that there are many different types of advocates and advocacy happening in the diabetes world today. And certainly, you can be a part of it.

On a personal level, I’ve always participated in things that I feel meet one (or more) of three criteria:
1) It’s interesting to me
2) I’m good at it
3) I am actually allowed to participate

That criteria has kept me from participating in the JDRF Ride for a Cure events (not good at fundraising), and some clinical trials (didn’t meet the criteria, so not allowed to participate). But it does mean that I’ve been able to attend and report on FDA public workshops (interesting to me), and serve as a part-time moderator of the Wednesday night DSMA Twitter chats (I’m good at it and allowed to participate).

Wherever you are in your diabetes journey, know that there are many opportunities for you to step forward and learn, connect, and volunteer. If you have even a sliver of time and a passion for doing something that could help you as much as it helps others, there is a place for you.

All of us will benefit from your participation. And I will be forever grateful for your selfless dedication.

This is my diabetes.


This is The Great Spousal Unit, walking our dog at Fort McHenry in Baltimore, home of the Star Spangled Banner, probably one of the greatest public picnic spots in the entire country.

We go there at least a couple of times every year. Usually in the morning, when we grab a couple of portable chairs, two large cups of coffee, a little breakfast, the Sunday newspaper, and the pooch. We take the entire morning, leisurely going through the paper, discussing the latest and how it makes us feel, and taking Boomer for a walk or two. We don’t usually return until early afternoon, choosing to take the long way home via city neighborhoods we haven’t been through for a while, to see how they’re doing too.

As I’ve gotten older, and my diabetes has gotten older, these brief moments in time become more and more precious, and essential. Work, internal and external relationships, diabetes and diabetes advocacy all play a part in ramping up the focus on every minute of every day. But those last two things… diabetes and diabetes advocacy…

If you’ve never lived with diabetes… imagine having more time for quiet mornings with those closest to you. Imagine having the time to turn your interests and passion into a hobby rather than a mission.

This is my diabetes.

This is Boomer the Dog, and Max the Cat. As you can see, they get along pretty well.

Neither Boomer nor Max are certified alert pets or therapy pets. The service and friendship they provide fall short of and expand far beyond those definitions. Max does have a knack for knowing when my blood sugar is low, or at least a knack for getting me to focus on treating a low. Boomer provides that rock solid dependability that helps you to know that no matter what, he’s on your side and he’s not going anywhere. When you’re excited about an achievement, or you’re sobbing due to some insult swallowed or dream dashed, he’s always there, tail wagging, ready to pick you up.

If you’ve never lived with diabetes… imagine your dog or cat as just a buddy, not a family member. Then imagine having the gift of a beloved pet who will celebrate triumphs over diabetes and commiserate over losses due to diabetes with you. No questions asked, no conditions. Imagine how incredibly special that can be.

This is my diabetes.

Photo courtesy of Rhonda B


These are some of my friends who live with diabetes.

Having a friend is spectacular. Having friends who understand you is like Christmas. Having friends who understand you, don’t judge you, and want to hang out with you now and then is like having Christmas every day of the year.

These people know you. They know what you go through. Sometimes, they’re rule breakers like you. They can help you navigate problems with devices, or give you insight into a new drug you haven’t tried. They’ll also help take your mind off the fact that you have a chronic condition you won’t ever be able to shake off. They are worth their weight in gold.

If you’ve never lived with diabetes… imagine feeling alone in your disease, feeling like you’re the only one who understands or ever will understand what you’re going through. Imagine the despair that can bring on after a couple of decades. Then imagine suddenly being accepted by new friends, just for having a busted pancreas, just because they too have known the despair. Imagine the gratitude you’ll feel and the renewed sense of purpose it gives you, every time you interact with them.

This is my diabetes.

Hey listen, maybe your life is a lot like this. Maybe you have a dog or a cat too. Maybe they bring joy to your life. Maybe you’re doing okay, and if you are, I am truly happy for you. We all deserve happiness.

I don’t know where my life is going from here. I only know that because of the people, the pets, and the experiences in my life, my outlook isn’t as bleak as it once was, and my diabetes is all the better for it. In fact, things are pretty damn great right now. We all deserve happiness.

This is my diabetes.

%d bloggers like this: