Tag Archives: 8 things

Giving Thanks

Thursday marks another Thanksgiving Day here in the United States. A day to give thanks for all of the blessings in our lives.

If diabetes is a part of your life, you might not think you have much to be thankful for. If that’s how you feel, that’s your decision… who am I to tell you you’re wrong?

In my case, however, I choose to stop and recognize that there is much for me to be thankful for this year, including these 8 things:

1. First and foremost, I’m thankful for a job that helps pay my bills and manages a health plan that ensures I have access to the devices and drugs that help me stay alive.

2. I’d like to give thanks to those who have provided opportunities for me to expand my knowledge or expand my advocacy efforts, and even get me involved in things I haven’t done before.

I’m including The Society for Participatory Medicine, who provided a stipend for me to attend HIMSS18 this year. Thanks to Janssen, who gave me an opportunity to meet other patient advocates at HealtheVoices. Also, Diabetes Patient Advocacy Coalition, who makes it so easy to be an advocate, and allowed me to be a part of the DPAC Policy Training Meeting in September, which included my first-ever chance to advocate before lawmakers. Count also Maryland’s Secretary of Health, who, through an appointment, allowed me to serve on the state’s Advisory Council on Health and Wellness.

Thanks to Dr. Nicole Bereolos, who gave me a chance to sit on a discussion panel she led at AADE in August. That weekend included the rollout of the #LanguageMatters video from Mytonomy, which featured a number of diabetes voices, including one you may recognize. It’s been a very busy year, but a rewarding one for sure.

3. Where would I be without the Diabetes Community? Wonderful friends who are smart, funny, curious, and welcoming all at the same time. I saw diabetes friends get on a plane this year and fly across time zones to attend the funeral for a member of the tribe. Many of us got together this fall for no other reason than the fact that we missed each other and wanted to be together for a while. Thanks to everyone who was a part of these or many other wonderful moments among compatriots.

4. Along with that, I want to give thanks to our magnificent #DSMA participants throughout the year. Every Wednesday, and especially when I’ve been a moderator, they’ve made me happy and proud to facilitate the hour long Twitter discussion. For the record, I’ll be back to moderate on November 28 at 9:00 eastern time (US).

5. Thank you to other diabetes groups that help bring people together, in various ways. Diabetes Sisters, Children With Diabetes, Beyond Type 1, even JDRF… they’re all using innovative means to keep the conversation going about the things that are most important to all of us.

6. I’m giving thanks once again this year for insulin, the wonder hormone that keeps me alive every day. Thank you Banting and Best, for saving my life and the lives of millions of others.

7. I can’t let Thanksgiving come and go without giving thanks to The Great Spousal Unit and Max the Cat, who have been alternately supportive and patient throughout the year. I hope I remember to recognize my good fortune in this regard this year and every year.

8. Finally, I’m thankful to you. For reading, for following on Twitter or Facebook or Instagram, for sending requests for Champion Athlete With Diabetes medals, and so much more. You make me want to keep writing here, and I can’t thank you enough.
 
 
So with that, please allow me to wish you a Happy Thanksgiving. What are you thankful for today?

8 Things: Why I still love to write.

Happy to say I’m on vacation for about the next ten days. I don’t know how much new stuff you’ll see here, but look for me on social media next weekend when #AADE18 comes to my city. I should have a lot to talk about then. In the meantime…

I’ve heard some talk recently about how blogging is falling out of favor these days, and how diabetes blogging in particular may have already seen its heyday.

I don’t know if that’s true. I’m always the last to know things anyway, and while you probably aren’t reading as many diabetes blogs as you once were, there are still reasons for it to continue.

So while I have a moment, here are 8 reasons why I am still proud to say that I’m a diabetes blogger:

1. I believe in telling my story. Oh sure, you can get that “me too” moment from someone’s tweet or Facebook GIF, but a meme doesn’t quite tell the entire story, even if it gets a lot of notice in the moment.

How could I tell about nearly dying on the operating table last year in 280 characters or less? What about my trip to Europe and the diabetes management required to make it happen? Those are things that require more elaboration.

2. I believe in sharing information. Whether talking about a workshop or conference I’ve attended, or letting you know about a chance for you to attend an upcoming workshop or conference, I still feel a responsibility to share what I learn.

The informational posts I publish, like this week’s information on DPPs, DSMEs, and DSMPs, are the ones I really hope you’ll read. Knowledge is still power, and that’s why it’s important for all of us to stay informed. I like trying to help with that.

3. I don’t really care if you’re still reading or not. There, I said it. It’s not that I’m not grateful you’re reading; in fact, I’m exceptionally grateful you’re reading. But if I let page views dictate what I talked about, I probably would have become a basket case long ago. And my page views probably wouldn’t be much different than they are today.

This is one that’s hard to understand unless you’ve accrued a certain amount of mileage in life. But I can tell you that producing something meaningful, whether it’s meaningful to me or to you, is enough for me.

4. I don’t know how long it will last. I’ve often said that I can’t keep writing here forever. I won’t… believe that.

But I don’t know yet when the end will come. I know when it does, I will miss it terribly. So I look forward to continuing to write as long as I can.

5. Despite that, I don’t fear change. It’s true that the only constant in our lives is change. However my online advocacy changes in the coming years, it’s okay as long as it’s productive.

And I like to think that once I’m no longer blogging, it will be because there are many other worthy writers to take my place.

6. More than ever, patients deserve a voice. This should really be at the top of the list.

Patients are getting more of a voice, that’s for sure. But there are so many individuals, be they patients themselves, healthcare professionals, or the general public who still haven’t heard our stories. They don’t know anything about the power of the patient voice. Here’s hoping we can continue to show them what it’s all about.

7. There’s always another story waiting to be told. I don’t know what the story is, or where I’ll find it. But the thrill of finding that story and delivering on the promise of sharing it inspires me every day.

8. It makes me feel good. And connected. And useful. Every time I click “Publish”, I get a dopamine rush to beat the band. It’s good for my mental well-being, on top of all of the other good (I hope) it does. Even when I’m on vacation.
 
 
Here’s something that’s true for everyone writing a blog, regardless of the subject matter: Being free to express our thoughts, share information, and connect with others gives us a sense of purpose, and a sense of belonging. There are many reasons to say goodbye to blogging… but at least 8 that leave me feeling happy about continuing. For now. 😉

8 Things: Communicate wisely.

Let me just say from the outset… I doubt that many who actually need to read this will do so. Also, I’m not even going to try to top what Renza wrote, because it says so much of what I’m thinking too. Being kind is the best way to establish respect and maintain your own self-respect.

But for the sake of providing my own perspective on how to get along inside and outside of the diabetes community (and I can’t believe we’re talking about this again), here are 8 things I try to keep in mind when I engage with someone who holds a different point of view.

1. First, I almost always wait.

Why wait when your point of view is under attack and it seems like everyone else is responding and jumping into the fray?

There are lots of reasons to wait. Often, just waiting takes the air out of someone’s self-important balloon. By the time you respond, they don’t have as much energy left to disagree with you. Also, and I can’t stress this enough… waiting gives you time to form your words and consider how you’re going to respond, or if you’ll respond at all.

That doesn’t mean I’m doing nothing while I wait. It just means that I’m not responding yet. However, I may be writing a draft of what I want to say; or figuring out a strategy for responding that includes what I want to say and what I want to say to any potential responses to my initial response.

By the time I finally do respond, I almost always do so with a more measured, more powerful message.

2. But sometimes, you just have to let it go. Not everything, or everyone, deserves your response. Some opinions and the people who speak them need to exist in a vacuum all by themselves. Restraint is tough, but sometimes you have to go high when they go low, to quote Michelle Obama.

Also, I like the idea of Abraham Lincoln and the “hot letter”. When confronted with an attacker either inside or outside of government, Lincoln would sometimes write a letter detailing his exact thoughts in the moment. Often, he wouldn’t send them or even sign them. I believe they were catharsis in a way, and probably sometimes, a first draft of a more tactful response to a difficult situation. I’ve done this too.

3. Try to address the issue, not the person. When I was a retail manager, I used to tell my employees that despite what we’re told, the customer is not always right… but the customer should never be made to feel like it’s their fault they’re wrong. Even if it is.

As much as I can separate the issue from the person expressing their opinion, I try to do that. Hurt feelings over being wrong about an issue is something people can get over. Hurt feelings over personal attacks are a much bigger hurdle.

4. Find the dividing line. There’s a dividing line somewhere, between anger or disappointment, and just being bitter. I’m okay with acknowledging someone’s anger over an issue, or disappointment at being left out of a discussion. But if you’re bitter? You own that all by yourself pal, and you’ll have to live with it, because I’m not going to validate your bitterness by responding to it.

Sometimes it can be difficult to find that dividing line I mentioned, but the more you can separate anger or disappointment from bitterness, the more likely it is that you’ll wind up maintaining a decent amount of personal space between you and your critic. And you’ll be more likely to maintain the respect of and from a critic, as long as they don’t cross that line into bitterness.

A few other very important points I’d like to make:

5. Make sure you’re right. If you’re calling out a journalist for using the word “gadget” in a story on medical devices, you’d better make sure you haven’t used the same word in the same context on your blog or in Facebook posts. Nothing kills your argument faster than contradicting yourself.

6. It’s okay to let someone have the last word. I’ve often stated my point of view and told my counterpart that I will let them have the last word. That does two things: 1) It closes the conversation after they make their last point; and 2) It really makes them think hard about the last point they’re going to make, because they know I’m not paying attention after that.

Especially when they’re being bitter, sometimes the best way to handle a detractor is by letting them cry themselves to sleep, so to speak. The more they display bitterness, the more my lack of reaction shines a light on it.

7. Sometimes, it’s better to handle things personally. In other words, through an e-mail, or even one on one at a conference or meeting. That can be more difficult because it doesn’t offer the false high that comes with a swift social media response. Regardless, public displays of outrage are not always the best way to get your point across.

8. Forever is a long time. It’s forever, man. I have had difficult communications with individuals, even where they were being bitter, and ended them in ways that leaves the door open for reconciliation. Now we can at least have a decent conversation online again, even if I don’t agree with their point of view.

Say what you want to say. But if you’re going to set something on fire, make sure it’s worth torching. I speak from experience, and trust me, you don’t want to have to cross back over a bridge you’ve already burned.
 
 
I hope these are useful pointers for you as you continue to navigate the information superhighway. Remember that people are on the other end of what you post. People with feelings, with jobs they’d like to keep, with families to feed, and with reputations they’d like to keep intact.

Aren’t you the same?

8 Things: Wordplay.


I’m a fan of words. Their spellings, their meanings. Learning to live with diabetes is like learning an entirely new language.

Here’s what I mean by that, using 8 examples:
 
 
1. Diabetus
I always hated when people said “diabetus” instead of “diabetes”. It’s the last two syllables… “beat us”. I don’t like the idea of living with a chronic condition that has that kind of language in its very name.

2. Medical Devices
There are more medical devices helping us to succeed with diabetes than ever before. Some people name their Dexcom Dex, or their pump some other name. If you’re someone using an Omnipod, do you call yourself a Podder? Are you Podding? I can tell you that I am definitely not Vibeing…

3. Co-morbidities
I don’t know about you, but I don’t even want one morbidity, let alone two or more. I might settle for 1/2 a morbidity, but that’s all. No more. I can only accept so much. I wonder if this is that bargaining part of bargaining, denial anger, depression, and acceptance we hear about?

4. Target range
To be honest, it would be a lot easier to hit the target if the target didn’t move constantly throughout the day. That’s the way it is with diabetes, every day. This is a term I’d love to find a replacement for.

5. Basal
When I wanted to begin on an insulin pump, I must admit that I didn’t even know what a basal or a bolus was. No endocrinologist I ever saw up to that point described dosing insulin in this way. Once my current endo educated me, I had trouble for a week or two remembering which was the basal and which was the bolus. So I tried to think of basal as the herb… you know, basil. I imagined an herb leaf every time I logged in what my basal rate was for the day. Don’t knock it… it worked.

6. Bolus
I don’t really have much to say about bolusing, except that I get ticked off every time autocorrect changes it to “blousing”.

7. Advocacy
Like many people, I used to think that advocacy was too big and too difficult for someone like me. The truth is that advocacy is easier than you think, it can take place in many forms, and it usually has a positive effect on both the subject and the practitioner of said advocacy. So let your advocacy loose… you’ve got a lot to give.

8. Lancet
Another word I don’t like. Probably because it has elements of onomatopoeia to it. In other words, the word itself sounds too much like what it does, which is lance the skin to get blood for a glucose test. I wouldn’t mind the onomatopoeiac nature of it so much if it were something a little nicer.
 
 
And there you have it… eight diabetes words, and eight ways of looking at them. I hope your weekend is fabulous. Talk to you next week!

8 keys to my diabetes success.

How is your diabetes?

That’s a loaded question, but it’s one that I get asked all the time. Like my diabetes is a pet or a sibling or something.

The last time I was asked “How is your diabetes?”, I started to reflect on the incredible number of ways that people have helped me over the years. And I got a picture clearer than ever before that this really is a team game, and I have so many to thank for any success I’ve achieved.

So, without further ado, here are 8 things that have been keys to my diabetes success:

1. My endocrinologist. She did a terrific job of getting me ready to begin life on an insulin pump eight years ago. I can’t believe it’s actually been eight years. Along the way, she’s helped me make little changes that have added up to big benefits, at least in terms of A1c numbers and avoiding dangerous highs and lows.

2. Diabetes technology. While we’re at it, where would I be without my pump and my continuous glucose monitor (CGM)? After hating it at first, I’ve come to rely on my CGM as the truth teller of what my glucose is doing throughout my day. It’s also alerted me to dangerous lows before they became a problem. That’s the first time I’ve written that, because I like the idea of handling things myself. But I have to give credit where credit is due… my Dexcom has been worth the cost so far.

3. #DSMA. The fastest hour of the week happens every Wednesday night at 9:00 eastern time here in the USA. Whether I’m a participant or moderator, I still get a kick out of the inside jokes, the GIFs, and other shenanigans that take place in addition to the diabetes-themed questions and answers during the weekly get-together.

4. Writers. Let’s add diabetes podcasters in there, because I like podcasts too. Part subject matter experts, part editorial pundits, part inspirational advocates, the people who take to the internet to write and podcast the latest and greatest (or worst) about this disease are changing lives, and saving them too.

5. Friends. I don’t think I can begin to count all the times my diabetes friends have helped me with something I wanted to know, wanted to figure out how to do, or needed to avert disaster. I did the first arm insertion of my CGM at a conference after being shown how to do it by someone else. I’ve been lucky enough to sit at a table (like the proverbial fly on the wall) and watch movers and shakers discuss policy and outcomes. I had not one, not two, but three people save my ass when I was in London without an inserter for my pump infusion set. I am so grateful for this and so much more that my friends have provided over the years.

6. Product and Software Developers. Ever-slimmer CGM sensors and hybrid closed loop insulin pumps. Open source software that actually closes the loop for people who have the right equipment and a little know how. Data platforms where our information can securely reside, for ourselves and our health care team to see. I’m not seeing this kind of effort or these kind of results positively affecting any other patient community.

7. Clinical Trial Participants. I haven’t talked about them much around here for a while. But clinical trial participants make a lot of the new technology and drugs we see even better by bravely stepping forward and agreeing to see necessary research through to its necessary conclusion. They provide more than just a body or a number for researchers… they provide valuable insight into what works and what doesn’t, and any product or software developer worth their salt should pay heed when that insight is shared.

8. Insurance Companies and Prescription Providers. Just kidding… did you really think I would include those two in a “Best of” list? I’ll tell you what… let’s make this last one the Diabetes Online Community. The DOC saved me once before, and I can give you a few pointed examples of lives young and old that were positively impacted by this vibrant and wonderful group of souls from around the world.
 
 
For better or worse, those are my 8 keys to diabetes successes. What are yours?

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