Tag Archives: diabetes online community

“I don’t know what I would have done without you guys”

I agreed to do something on Saturday. I set off at around 9:00 a.m. and slogged my way across town in the cold mist, which later turned into a cold April rain. I went to help a friend clear the basement in her parent’s home.

This is not what I wanted to be doing Saturday. It was not where I wanted to be.

For decades, my friend’s parents have spent part of their year in Baltimore, and part of their year in Cairo. Her father’s Egyptian, her mother American. A little over a month ago, after a long illness, her father passed away in his home city. Her mother is still there, tying up loose ends until she is able to return to the States.

My friend has two sisters, but they don’t live here anymore, and that left my friend as the one left to try and make sense of decades of paper, old electronics, window shades, and other nic-nacs on shelves. And shelves. There was a lot of stuff in that basement. A lot to deal with.

There was a 30 foot long dumpster in the driveway, and in a little over 2 1/2 hours, we filled it. But it wasn’t easy. There was a lot of stuff do deal with. A lot of decisions had to be made.

The easy part was deciding what to throw out. But… it was decided that some of what we found should be donated. Some of the items we found actually had some value, and were kept. There were things that needed to be decided on by her mother later. They would stay in the basement.

I had my own issues during all this. In addition to helping with a difficult task, I had to take care of my own diabetes, making sure to fuel up at times to avoid being useless due to a low blood glucose level.

As we worked through the mass of material before us, from time to time, I could see that the process of it all was affecting my friend in a profound way. It wasn’t just stuff to her… it was decades of memories. Occasionally, she would retreat and her boyfriend needed to take over the duties of deciding what stayed and what went.

This process frustrated some of her friends who were there to help. They had trouble understanding why it took so much time to decide on a strategy, on what to do with something they found. Why couldn’t we just clear the basement? Why weren’t we doing this faster?

But it needed to happen this way. If it didn’t, we risked frustrating my friend, causing her to pull back entirely, sending us away and forcing us to try on another day. This was not what she wanted to be doing Saturday either. It was not where she wanted to be.

So carefully, deliberately, we started to chip away at the pile of things before us. Children’s toys. Scrap books. Old televisions. Boxes and boxes of books. A lifetime of memories. There’s no guide book or training manual on how to deal with this.

When it was over, my friend and her boyfriend were extremely grateful. I heard things like “I owe you big time”, and “You guys are rock stars”. Those sentiments were as sincere as any I have experienced.

Sifting through decades of memories, finding what you can work with and what you can’t, and emerging on the other side of it all with a feeling that you’re making real progress, is a lot more complex than just throwing a bunch of shit in a dumpster.

In the end, I know I was where I needed to be on Saturday. The real breakthrough was not in how I helped, but in what I learned.

As I stood on the edge of a nearly overflowing dumpster, I tried to encourage my friend, telling her that this was a sign of real progress. She said, “Have you looked in the garage yet?”.

There’s likely another Saturday there in my future. Progress has been made, and much more needs to be accomplished. But my friend understood that your friends mean so much more when they’re there for you to help with the difficult tasks. As her friend, it’s so worth it to hear “I don’t know what I would have done without you guys”.

Saturday Night.

It was Saturday, about 6:00 p.m.

My BGs had been running high all day. It was time for dinner, and since I try to pre-bolus whenever possible, I washed my hands (like I almost always do), did my pre-dinner check, and saw that I was 138 mg/dL.

I was just making a sandwich and eating a tomato for dinner… no big deal, except that bread seems to spike my post-prandial numbers a bit. So I bolused based on that 138 number and continued watching the L.A. Dodgers and Pittsburgh Pirates game on TV.

Pre-bolusing being what it is, I had expected to wait 15-20 minutes before eating. About ten minutes after my bolus, I felt what I thought was a sign that I was low: A feeling of shakiness, sort of like I was sinking, and a suddenly overwhelming hunger.

But I had been high all day. I was 138 mg/dL just ten minutes before, right? In the next five minutes, the following occurred:

– I went back into the kitchen to test again. The result: 48 mg/dL.

– I grabbed the juice bottle from the refrigerator and, carefully, a glass from the cabinet. Somehow, I got the glass and the juice on the counter just before I slunked down on the kitchen floor.

– Now I’m trying to (again, carefully) get the glass and juice off of the counter and onto the floor next to me so I could drink it. I didn’t know if I could get back up again until I could get my BG back up again.

– After trying for what seemed like a long time, but really wasn’t, I was no closer to getting the glass or the juice off the counter, but I had managed to lay flat on my back, feeling very sleepy, if that makes sense.

– Somehow, something inside me made me realize that I needed to get up to the counter to get my juice. I had no other choice. Again, it seemed to take a long time to stand up, but it wasn’t a long time after all.

I finally got my juice, and within 15 more minutes, I had eaten my sandwich and was feeling almost normal again. Except for the post-low hangover that comes with an episode like this. And it was significant.

Immediately after, I called The Great Spousal Unit, who was away, and let her know what happened and that I was okay.

Then I took to Facebook and recounted what happened. I also replied to some of the replies I received, and posted a little more too. I was so grateful to have people who understand help me feel better after an awful experience like that. Still, I generally don’t spend my Saturday night hanging out on Facebook, and that made me ask a few questions.

Was I really trying hard to connect after almost being permanently disconnected? Was I trying to keep a lifeline (so to speak) open in case of another low? Was I just trying to show how strong I am and that I was okay and no one should worry about me because I’m tough as nails?

Maybe it was a combination of some of those things. Plus this:

When you nearly lose your life (because, for worse or for worse, hypoglycemia is a near-death experience), you want to connect with the special people in your life and forget about anything else that doesn’t really matter.

Hypoglycemia sucks. Diabetes sucks.

As a person with diabetes, I am in a unique position to let the rest of the world know that we need the best accuracy possible from our glucose meters. We need Medicare coverage for seniors who simply must keep their continuous glucose monitor technology. We need artificial pancreas technology that will help read our glucose levels and adjust pump settings automatically based on reliable algorithms designed with patient safety as its first priority.

And we all need to have people to reach out to, to make us feel less alone when we’re at our most vulnerable. God bless those who don’t have anyone to turn to.

If you have no one to turn to when diabetes wrecks your evening, I encourage you to find the Diabetes Online Community. Search the #DOC hashtag on Twitter. Do a Google search for diabetes blogs. Or send me an e-mail. Don’t be alone.
 

How to react? How not to react?

For the benefit of anyone reading this months down the road:

CrossFit, the fitness company, posted a tweet that was particularly offensive to People With Diabetes. It was wrong, both in its tone and its wording, and because its statement had absolutely nothing to do with actual, you know, facts.

After this tweet went out, members of the diabetes community did their best to show their outrage at such a gutless attempt to guilt people into working out using their program, and shame People With Diabetes. Which brought out more ridiculous responses from the CrossFit CEO. Stupid is as stupid does, I guess.

The biggest diabetes organizations in this country got involved too, posting their own social media messages in response. For the most part, I was happy to see this. It’s good to know that when someone tries to hurt you via social media, JDRF, ADA, and others have your back.

But… and you knew there would be a but… some of the reactions were less than stellar from an inclusiveness point of view.

Is that too vague? I’m not sure I know how to put it into words. I think what I’m saying is, when I see a popular singing star, who lives with diabetes, tweet “Know the difference between types of diabetes”, I wonder what in the hell the different types of diabetes have to do with this issue in the first place. I’ve gotta admit… when I saw that one, I cringed a little bit. Why?

Because when we point out that my type of diabetes isn’t to blame for [fill in the blank], or we say this type of diabetes isn’t caused by [fill in the blank], we’re also implying that some other type of diabetes is to blame, or some other type of diabetes is caused by something that our type isn’t. Don’t believe me? Ask a Type 2 how they felt about some of the most vocal responses to the CrossFit issue.

And if you say, “Hey, well, that’s not what I meant”, I will tell you that it is not what you say, but rather how what you say is perceived that is important. Just ask my wife. And, Type 1s, when we make Type 2s feel this way, we are alienating 25 million People With Diabetes just in this country. 25 Million potential allies in the fight for better care, better access to medication, better acceptance by society. And, Type 2s, if you ever alienate Type 1s, you are alienating one of the most resourceful and vocal groups of diabetes advocates on the planet.

To varying degrees, we are all getting screwed in the media. To varying degrees, we are all getting more attention in the media. I don’t have the exact textbook way to respond to situations like these.

I just know that, like I’ve said before, it’s not always important to get there first with the most anger. It is extremely important that we respond to shaming and stigma-inducing ridiculousness by starting with what is in our heart… considering everyone affected by (and potentially viewing) the initial issue, and potential responses… and holding up a light to our shared humanity, and giving a voice to that shared humanity, in a way that protects us all, lifts our common cause to the highest plain, and encourages thoughtful discussion and meaningful change for the better.

I think that’s the longest sentence I’ve ever written.

There will be more discussion on this topic, coming on the next episode of Diabetes By The Numbers, here in a few days. As always, your opinion matters here too.
 
 
 

Close encounters of the online kind.

Okay, so my offline life with diabetes doesn’t offer much interaction right now.

On the other hand, my online diabetes life is chock full of interaction.

In fact, it keeps me on my toes all the time.

I never connected with the Diabetes Community at all before finding the DOC back in 2011. Never even heard of such a thing. Now, there are many people who sort of live inside of my computer or mobile device, whom I read and trust and admire. And yes, interact with.

I write this blog for a variety of reasons. I write to add my voice to the conversation. I write to advocate so others can add their voices to the conversation. I write to inform, when I can. And often, I write just for me. Because I like to write. Because, when I’m gone, I hope to have left a sliver of what my life was like here in the 2000-teens, with Type 1 Diabetes as a constant companion.

So sometimes, I’ll write something just for my own sake, recounting things that make me happy, even if it doesn’t necessarily move the diabetes needle further toward a cure. Occasionally, in those moments when I worry that my mind will go at some point (Mr. Glass Half Empty), I take comfort in the knowledge that at least I’ll be able to go back and see who my friends were, even if I can’t remember all their names by then. I’ll just have to remember the web address. That’s what Favorites are for, I guess.

I can’t tell you how much fun I have moderating the DSMA Twitter chats every so often. Even when my brain is fried from a long, hard day at my job, in the middle of a cold, dark winter, when my day starts at 4:30 a.m. and DSMA finishes late on the east coast and I’m having trouble keeping my eyes open, I get such a kick from the thrill of a newbie’s reaction to being part of the conversation, or a timely wisecrack from a DSMA veteran (who’s also a part-time DSMA moderator).

It’s weird though. I consider most of the people I interact with online as my friends, even though I don’t know many of them all that much. When they are wronged, when people call them out online, when people try to shame or stigmatize their disease, what they’ve done or how they live their lives, I’m ready to defend them right away. Why? Because someone is trying to hurt my friends. You don’t mess with my friends.

Also, because they’ve been there for me more times than I can count.

We all engage in the ways that work best for us… or are most convenient for us. But together, all of us are part of a greater community (see what I did there?). Being part of a greater community carries with it a certain amount of responsibility. Not all of us have an equal amount of responsibility at the same time, all the time. It comes and goes, depending on a number of factors.

We also have varying amounts of opportunity, depending on a number of factors. I think of opportunity differently. When I have an opportunity to do something, I feel almost compelled to seize on it. Of course, not all opportunities are the same either. What I’m saying is, we’re faced with questions of whether to engage or not engage all the time.

It’s not about repaying a debt to the ether that I’ve somehow concocted in my mind. Again, it’s about being part of a community, being a building block of a group that makes greater things happen, not just by myself, but by holding up my part of the foundation of The House That Makes Life Better for everyone living with and affected by diabetes.

I may have more of an impact online than offline most times. That may have a lot, or very little, to do with me. But I’m happy to engage in any way I can, so all my friends living with and affected by diabetes can walk an easier path toward the future.

How is your online life different from your offline life with diabetes? Do you engage more either way? Do you like engaging more online or offline? Do you seize opportunities, online or offline, when they arise? What makes you say yes or no to these opportunities?
 
 
 

The DOC as an information source.

It’s easy for me to think of the Diabetes Online Community as this lovely group of people who advocate, support one another, and help others live better lives with diabetes.

What I sometimes forget, but can never underestimate, is the power of the DOC to inform and educate. Let me give you an example:

After working for my company for 15 or 16 years, I still hadn’t met one other person there living with diabetes. Now, after almost 17 and a half years, I know four.

One of those people contacted me last week to ask about the Animas Vibe system, the pump integrated with the Dexcom G4 continuous glucose monitor. They asked me if I had tried it, and if so, what I thought of the product.

I said that I had not, but had used an Animas Ping pump during a couple of clinical trials at the University of Virginia. This person was really looking to get first-hand knowledge of how the Vibe works and whether it was worth the hype. I then digressed into how awful it is that no insulin pump maker will let patients trial pumps anymore (lamenting the demise of the Snap), and how this would all be easier if we could just decide for ourselves, instead of deciding based on what a company rep or a doctor tells us. Digression is my strong suit.

But you know what? I knew that many people have used the Vibe system, and they’ve written about it, and it wouldn’t take too long at all to find a thorough piece on the subject.

In no time, I found this insightful review of the Animas Vibe by Melissa Lee at A Sweet Life. Sure, I knew that Melissa is knowledgeable and trustworthy, but even if I didn’t know that, her review was a very good one, and I think it’s just what this person needed.

I don’t know if this will help my friend decide on whether the Vibe is the right choice for them. What I do know is that I am often guilty of thinking about how I connect to the DOC, rather than how the DOC connects with me.

This is a good reminder of the vast treasure trove of information that we are all contributing to our community. People don’t have to always go blindly about the healthcare universe, not knowing about a product they and their insurance provider are purchasing until after they purchase it. Just knowing this information is out there already helps people make informed choices, rather than guesses.

Your story, your experiences matter. Sharing the stories of others and their experiences matter just as much. That’s been true since the earliest civilizations graced our planet so many years ago.

So today, let’s remember the power of the Diabetes Online Community as an information source. And let’s keep adding to the wealth of knowledge.
 
 
 

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