Tag Archives: diabetes online community

Things I love about the DOC.

On Monday, I spent a little time talking about what I’ve learned from the Diabetes Online Community. Today, I’d like to talk a little bit about what I love about the DOC. Think of it as my letter of thanks on the day before Thanksgiving here in the USA.
 

  • This is going to sound sappy (I really don’t care if it does), but I have never encountered so many helpful, supportive, and unpretentious people as I have in this community. That even includes church communities.
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  • It’s pretty safe to say that Wednesday nights are my favorite night of the week. If you don’t know what I’m talking about, join us on Twitter by following @DiabetesSocMed and the #DSMA hashtag beginning at 9:00 eastern time(US), and maybe Wednesday will become your favorite night of the week too.
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  • The way the DOC mobilizes and helps people is inspiring and heartwarming. See Spare a Rose, Save a Child, Strip Safely, and YouCanDoThis Project for starters.
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  • I love reading people’s stories. Whether someone is getting comfortable with an insulin pump for the first time, participating in a clinical trial, handling work and their diabetes or school and diabetes (or both), there’s nothing like watching those accomplishments through another’s eyes. You all suck me in and make me invest emotionally in your lives, and it’s the greatest show on earth.
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  • The global nature of the DOC is incredible. I’m not only talking about people living all over the globe, but also people living all kinds of different lives all over the globe. If you’re new to this community, I think you’ll be surprised by the fact that you’re very likely to find someone just like you. “Me too” is indeed powerful.

 
About four years ago, I was feeling about as low as you can imagine. Today, there is so much for me to find out about and celebrate. Given enough time, I suspect I could double or triple this list without too much trouble at all. There is so much joy and information and advocacy and encouragement out there. I am very thankful for the DOC and what it has meant to my life these past few years.

Help me add to this list: What do you really love about the Diabetes Online Community?
 
 
 

Some things I’ve learned from the DOC.

If you haven’t been by this place on the internet before, or if you aren’t up on diabetes talk in general, let me tell you that DOC stands for Diabetes Online Community. Loosely defined as places and people that those of us with whacked pancreases connect with in cyberspace.

There are lots of communities online, and like many others, ours is a place that teaches as well as supports and connects. Here are some of the things that either I didn’t know, or didn’t know very well before I discovered the DOC:
 

  • There are so many people who go through the same things I go through every day. Many of them handle managing their diabetes better than I do, and I’ve learned something from each of those people.
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  • Insulin on Board—I was mostly oblivious to insulin on board before reading blogs from people describing how they account for it in their diabetes management. I had heard of IOB; I just didn’t understand it at all.
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  • The art of the Pre-Bolus—I had never considered pre-bolusing ever, and had never had a doctor suggest it, before I read about it online. I wish I had the link to the first really great blog post I saw about it. I’m the kind of person that is helped a lot by pre-bolusing.
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  • Dual Wave, Square Wave, and Super Boluses—I had seen the options on my pump for square wave and dual wave boluses, but didn’t dare try them because I didn’t know if they would help me, or how they would help me. Reading how others have mastered these, plus the super bolus, has given me the confidence to try them from time to time myself.
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  • How to travel with diabetes—I’ve always thought I was an intelligent travel planner. In reality, I had just been going through the motions and been lucky. After reading/seeing/Tweeting with people in the DOC, I’m a much more savvy packer, and I’m able to get a lot of gear in a small space if I have to.

 
 
As always, nothing written here should be taken as medical advice. Still, there is so much we are still learning from each other. As our community grows, the chances to teach and to learn will grow. I really like that.

So let me ask you: What have you learned from the Diabetes Online Community?
 
 
 

#DOCasksFDA: Excitement, disappointment, perspective.

Like so many others, I looked/listened/Tweeted in on the #DOCasksFDA presentations on Monday afternoon (or morning, depending on where you live). A conversation between the diabetes community and the U.S. Food and Drug Administration, it promised to open a window to the FDA’s role in our diabetes lives.

I was quite interested in what was going to be said, and how it would be presented. There were numerous presentations by FDA staff and government policy makers, and diabetes community movers and shakers.

Let me just say this, for people who haven’t been at a gathering of this type, and especially for those catching it via the webcast: I do understand that seeing everything via a webcast is not the same as being in the room. But only a few were going to actually be in the room, and that doesn’t mean the rest of us were going to be left totally in the dark. For people who have complained for so long about being left out of the process (define your process here), this was an important step, even if it meant registering for the webcast as a participant, then having to log in as a guest, which probably meant the same thing anyway.

Twitter-KarenBittrSweet

If you don’t know this already, the response was tremendous. In fact, so many people were logged into the webcast that it overwhelmed the web servers at the FDA.

Twitter-DiabetesMine

Honestly, I thought it was possible that we just overwhelmed the meeting capacity of the Adobe® Connect session that was set up for this event. Regardless, it was almost certainly a case of a huge amount of people trying to look through a tiny keyhole all at the same time.

In a way, that’s a good thing, right? We showed the FDA how big a group we are, and how seriously we take the FDA’s role in reviewing and approving drugs and devices. This is proof positive that we have serious questions and concerns, and a big desire to know more.

Twitter-gborkman

On the other hand, it was disappointing to have a large slice of the meeting completely lost. I mean, I started work at 7:00 a.m, worked straight through without a break until the webcast began at 1:00, then worked another two hours after, just so I could take it all in live. So when the webcast went down, then just the audio came back for me, then even that went down again, I felt a real sense of loss.

Twitter-StephenSType1
 
 
Still, I think a sense of perspective needs to prevail here.

Twitter-StripSafely

This is the first time a forum like this has been live streamed between the FDA and the diabetes community. If events like this were reccurring, I would feel good knowing the worst technical problems occurred the first time around, and things got better after that. I’m bummed about missing so much, but I’m willing to forgive a little more the first time around.

Also, we did have the Twitter feed (hashtag: #DOCasksFDA) to rely on when things went awry. It’s not the same as being there, but it is something.

And the best part is that the presentations will be available soon online. I’m hoping that includes recordings of the parts of the webcast those of us not in the room missed.

Most of all, it’s important to note two important things about that afternoon:

1. The FDA is engaging with us.

Twitter-FDA-Patients

2. The diabetes community showed an amazing amount of interest, concern, and advocacy during those three hours, webcast or not. This was Tweeted by Manny Hernandez in the first half hour, and the conversation only accelerated from there:

Twitter-askmanny

Considering the technical difficulties, I hope something like this can be done again very soon. The need exists. The desire is certainly there. I am very grateful to the FDA for agreeing to do this, and for trying to solve technical problems when they happened. I’m grateful to Kelly Close, Adam Brown, and the DiaTribe team for facilitating this event. And I couldn’t be prouder of the rest of the diabetes community, who turned out in oversized numbers to voice our interest in interacting with this government agency. It can only get better from here, yes?
 
 
 

Into the time machine: If I were talking to myself five years ago…

Stephen…

I’m back. I know, I wrote to you back at diagnosis, but haven’t been in touch much since. Well, we need to talk again.

I know you’re having a really rough time of it right now. People are beating you up nearly every day with their ridiculous requests and their stigmas and their belief that diabetes is simple to manage. In case you haven’t figured it out by now… It’s not. Likewise, work has been wearing on you for a long time now, and it seems like the cloud that’s been following you around for a long time will never move away.

Well, I have some good news for you: This is going to change.

Certain events are going to occur, and it’s going to seem like it’s getting worse for a while, but trust me when I say it will get better. Like it does whenever things like this happen to you, the change will come from somewhere where you least expect it. To begin with, you’re going to finally give in and start on an insulin pump. When I look at it now, I think that may be the first time in decades you say to yourself: “I don’t give a crap what it looks like, I’m still the same person I was before I connected this thing”. About a year and a half after that, you’re going to hear the term “Artificial Pancreas” for the first time. That’s going to set off a number of feelings and journeys of discovery too. Right about this time too you’ll discover this Diabetes Online Community thing that I mentioned in that letter I sent you at diagnosis. Once you do, it’s going to set off little changes… things that you do that seem little on their own, but start to add up to being a better person who’s more connected to his outside world than ever before.

You’re going to eventually call yourself a diabetes advocate. It’s going to sound weird at first when you say that, but at some point you’ll start to reassess your viewpoint of what an advocate really is. Also, going back to those little things, you’ll start to get involved in causes that will not only help others but will also reinforce your own confidence and sense of self worth, which, let’s be honest, needs a hell of a lot of reinforcement right now. Seriously dude… you are worth more than people are saying you’re worth right now… stop hanging your head. Unfortunately, you’ll find that there are causes that need your help all the time. Don’t worry… just do what you can, when you can do it. Something is better than nothing.

For what it’s worth right now, here’s a little advice:

Stop worrying about everything all the time. You’re not 20, or 30, or even 40 anymore. You can’t fight every battle like it’s life and death. You don’t have the time, and you don’t have the energy to deal with everyone’s crap full time anymore. Let other people fight things out. Use the energy you save for something you have a passion for. I know you’re going to find that passion again soon. And there will be people who need your help. Use your powers for good.

You can learn from everyone… even the people who don’t have your best interests at heart.
People are interesting. They are not all the same. They all have something important to tell you, and they are revealing it almost all the time. Be open to listening. Be open to recognizing that it’s okay if you aren’t the foremost expert on everything. Find out how good it feels to help shine the light on someone else who deserves it. Never, ever forget to say Thank You. Over and over.

Be a little bolder.
Remember your best friend from high school? I know, you miss him. He was the kind of guy who could sell anything to anyone, and did. He was the one who, when the Russian hockey team came to town in the early 80s I think, was the only one locally to get an interview because he bought a few pair of American jeans and handed them out to the players. He made friendships in that instance, and even kept one or two of them until he died. What he did wasn’t crazy, was it? He was just saying, “I’ll try this, and maybe it will work”. That’s what you need to do. Ignore that voice that says you’re going to get yelled at for asking. If you do get yelled at, it will be an indictment of their character, not yours. And you won’t get yelled at. People might even say yes.

Be a little happier.
This is important: Enjoy the moments of happiness you’re granted when they happen. Not everything can be sunny every day. And as much as I hate to be the one to break this to you, you’re not going to live forever. So when something good happens, don’t worry about the evil that’s lurking around the corner ready to jump you. That’s old school Stephen-think. Just enjoy the happiness while it lasts. It’s going to make a huge difference for you if you do.
 
 
I really hope this letter finds you. You need a change. A series of changes. They might seem difficult to imagine, but you’re going to pull it off. I know you will. I support you… no conditions. Now be well and start writing the next great chapter of your life.
 
 
 

Every picture tells a story.

 
 
#showmeyourpump
 
 
The Great Spousal Unit was away on Saturday, so I basically did what I usually do when she’s away on a Saturday: I got up early, had a couple of strong cups of coffee with breakfast, visited my favorite farm truck, came home, cleaned the house within an inch of its life, started the laundry, had lunch, Oh… she came home for about an hour and a half… and yes, absence DOES make the heart grow fonder… where was I… yes… I finished up, watered the plants and the gardens, picked up the dry cleaning, stopped in to say hello to my friends at my favorite local place (you know what I mean if you know what the number #147 means), and then I went home to make dinner.

The point is, the unsaid point of all this up to then, for me anyway, was this: I had seen so much bad news on the television this past week that I was happy to disconnect, turn it all off, and just concentrate on me and my happiness for a while. Simply put: The bad news from Ukraine, Gaza, and the anti-immigration factions in America (I think they’ve forgotten that they have descended from immigrants themselves) had me feeling so sad that I didn’t want to hear anything from anyone for a while.

Then I prepared dinner (and it was good– a recipe is in the near future here) and sat down to eat it. I pulled out my iPad, dialed up the Pandora (B.B. King channel), and proceeded to chow down. Some of my stress had gone away, but by no means had all of it dissipated.

Since the iPad was nearby, I started to check out my Twitter feed.

That’s when it happened.

I started to read post after post with the hashtag #showmeyourpump. Of course, this all started with Miss Idaho, who bravely (and why the hell NOT?) wears her insulin pump for the world to see, started to get some non-D world props on NPR and other outlets. I saw photos of people heading out for a run, people on the beach, having dinner, and living perfectly normal lives that just happen to include an external pancreas.
 
 
My reaction started with “Oh, that’s cool”, to “I love that… wouldn’t it be cool if that started trending?”, to something like this:

showmeyourpump

Once again, without even knowing it, the Diabetes Community pulled me up from a very sad, very unhappy place to a place where I was happy and optimistic, even proud that I wear my pancreas outside of my gut. And even though this has been trending for a few days now, even though I’m late to the party again, I can only say:
 
 
Thank you.

You will never know the extent to which you lifted my spirits.

I will support you through thick and thin, forever.
 
 
Thank you.

 
 

On my way to work this morning

On my way to work this morning


#shomeyourpump
 
 
 

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