Tag Archives: DOC

Like these links.

Welcome to a Friday rundown of some things I’ve read recently from our glorious Diabetes Online Community. I encourage you to check these out, and how about leaving a comment or two for the writers? Sound good? Here we go:
 
 
A couple of weeks ago, I wrote a post about how our diabetes can be different from person to person, and how we have many ways of managing our condition. In the end though, we take what we learn and personalize it to come up with the best life with diabetes we can. The post was titled You do You.

Well, guess what? Renza wrote about the same thing, and also covered the fact that just because I don’t manage my diabetes like you do, I’m not wrong. Neither are you. I had to add a reference to it here, because it’s better than mine and because I like strong language when the situation calls for it. Renza’s post is titled:
You do You
 
 
Are you a dude? Are you interested in knowing more about dudes with diabetes? It is Men’s Health Month, after all, and Wil Dubois at Diabetes Mine has a great rundown on how diabetes affects everything about being a man:
Talking Sense to Men with Diabetes (During Men’s Health Month and Beyond)
 
 
I’m not a parent, so I’m not a parent of a child living with diabetes. But if you are, or if you were ever parented as a child with diabetes, you’ll want to read this from Meri, because it’s true and it will make you feel good:
A step by step guide to perfection
 
 
Finally, Laddie at Test, Guess and Go wrote something that pretty much sums up my life with a CGM these days. I’m glad I’m not the only one:
Living on Planet Dexcom
 
 
Enjoy your weekends kids… I’m off to D.C. for a diabetes meetup Saturday, then to a play on Sunday. Talk to you next week!

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Like these links: More of the DOC’s greatness.

It seems to me that I haven’t shared much of the Diabetes Online Community’s greatness with you lately. So let me try and rectify that. Here’s what I’ve been reading lately:
 
 
“That is where the silence comes in. When things are good, we have nothing to talk about. When things are bad, we are ashamed to talk about it. Why? Because the world is full of assholes.”
That’s from Brian at (Buzz, Buzz) Not my Cell. He’s talking about perspective, how the world could use a little more of it, and how sometimes, he recognizes his life is easier than others who have to contend with diabetes every day. I see a lot of truth in this:
Easier Said Than Done
 
 
Kate Cornell has an update on her experience as an insulin user. If you’re living with Type 2 Diabetes and thinking about talking to your doctor about insulin as part of your diabetes management, you just might want to hear what Kate has to say:
Insulin: An Update
 
 
Diabetes Dominator Daniele Hargenrader has a super diabetes life hack to share with you, and it’s a good one, especially if you use an Omnipod:
Diabetes Adulting Hack
 
 
This Diabetes Mine post about alcohol and diabetes is worth a look. It’s a good starting point if you’re looking for more information on mixing alcohol and insulin. And there are helpful links to additional resources included:
Yes, You Can: Safely Drink Alcohol with Diabetes
 
 
And Laddie Lindahl is about one year in on her experience with Medicare. Here, she talks about how it’s going. I’m taking notes from her Medicare posts so I have a roadmap for my own Medicare experience in about ten years:
One Year on Medicare: Advocacy Versus Acceptance
 
 
Renza used her 20th anniversary of living with diabetes to come up with a list of things she wishes she’d known when she was diagnosed. I don’t know if I could come up with twenty, let alone twenty seven:
Twenty things I wish I knew about diabetes
 
 
Finally, a reminder from Kelly Kunik via an experience at a local coffee shop. We could use a little more of this too:
Kindness Counts
 
 
One more thing… you may have noticed that my blogroll to the left has been updated. I took out the ones that are gone or where nothing has been posted in the past year. I also added a couple of new Blogs Worth Your Attention. If you have any others you’d like me to add, let me know. Thanks!

“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”.

Diversity of thought.

As I was growing up, I imagined that at some point, I would be part of a group of friends and colleagues who retained the things that made them unique, while embracing solidarity in the things that made them alike.

Let me tell you, that did not seem possible for a long, long time. In my twenties, a lot of it was my fault. I had exactly zero social skills in those days. It seems like for longer than I care to remember, I had the market cornered on saying the worst possible thing at the worst possible time. Possibly.

Toward the end of my twenties, I met two people who really taught me a lot about communicating with others, and a lot of what it means to show empathy for another human being. And they taught me the importance of listening. Not just listening because every article and blog post on connecting with others says that listening is important. But because others connect with you when you listen. I have learned so much from these people.
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In addition, I began to read a lot more than before, and my interest in history and challenges that people have overcome has helped me see that successful people are not successful 100 percent of the time. Once I realized this, I could begin to make sure that, as the song says “temporary setbacks / are part of what I’d planned”. I could be nicer to people because I wasn’t as worried about appearing to be the most successful person in the room every second of every day.

It’s not like I was a jerk or anything; at least not intentionally. It’s just that I started to be more open to considering other viewpoints, listening to what others had to say. Then one more important development happened:

The internet blew up.

Now I had access to viewpoints from around the globe, something I had been seeking for a long time. Granted, a lot of the viewpoints you read on the internet are completely whacked out, even in the diabetes community.
but many are not. In fact, some of the most insightful, most poignant nuggets I’ve found have been from quiet little corners of the web where, statistically, few ever go.

Has it helped my diabetes? Sure it has. I’ve certainly learned a lot. I’ve been saved from mistakes thanks to a couple of things I’ve read over the years. And I hope I’ve been able to help people learn, and find help, and find support, shouting through my own window onto the information superhighway.

I’ve also been lucky enough to connect in person with many I’ve encountered first via the web. I’ve been able to prove something that was told to me by someone long ago: that privately, most people are pretty much the same as they seem in public. Through this DOC, that means I’ve been able to meet many wonderful souls who continually teach me a lot about being a person who practices both perseverance and empathy in equal measures.

In the end, I’ve been lucky enough to find those special, unique people who share a lot of my goals and hopes for the future. Whether I’ve met them in person or not, I am invested in the things that are important to them. I am hopeful for their futures too, because what’s good for them, and good about them, is good for me too.

So remember to listen. Let your empathetic side show. Invest yourself in the success of others. You’ll find that you’ll learn a lot, care a lot more about people, and find more friends than you could ever imagine.

Community.

I speak to you today in praise of the Diabetes Community.

Multi-faceted, multi-talented, multi-country, multi-cultural, it is the living embodiment of selflessness and inspiration. Its accomplishments are many, and its biggest challenges remain to be conquered. For every advancement, every success, failures of our healthcare systems and of our own endocrine systems means our efforts are not complete.

There is much to be excited about. We are connected as never before, through social media and patient-centric organizations. Blogging is still a thing (at least I hope it is), and this community can boast writers that are among the best around at telling their stories of living with a chronic condition. In the past year, podcasting about diabetes has taken off again, and that gives people a chance to hear the latest without actually having to read the latest.

And there are the athletes. Reaching the heights of their chosen sports, amateur or professional, climbing Mount Everest, winning auto races, playing in the National Hockey League. Riding 100 miles on a bicycle, for no other reason than to help raise money for research toward a cure. There are organizations that encourage and help get people moving so they can simply remain as healthy as possible, for as long as possible.

This community is full of passionate advocates, who see a need and try to fill it, or see a wrong and try to right it. Advocates who speak before Congress, who speak before regulatory bodies, who debunk long-established myth and self-serving stigma to anyone who will listen. God bless them. As we break down more barriers going forward, I hope we can find a way to turn our short-term advocacy efforts into sustained, long-term advocacy movements. In the end, a lot of advocacy is simply outlasting those who oppose us.

There are increasing numbers of healthcare professionals living with diabetes, and many who don’t live with diabetes but support us in ways we couldn’t have dreamed of a generation ago. I like how their profession allows them to have both a unique perspective on our disease, and an even bigger motivation to educate all of us about the importance of never giving up on our own self-care.

Yet, there remain difficulties. For every person running a marathon or leading a local support group or participating in a clinical trial, there is someone who lives with depression or burnout that they never counted on when they were diagnosed. There is someone who goes to a doctor once a month to get injections directly into their eyes to help reduce the ravages of diabetic macular edema. There is someone who works hard every single day to even out the roller coaster of glucose readings they see on a continuous glucose monitor. Their issues are not going away, so we should continue to show them the love and support they so richly deserve.

Being part of the Diabetes Community includes things like giving so that children living with diabetes in developing countries don’t also live with a death sentence. For many, it includes occasional happy gatherings full of laughter and hugs and bolus-worthy delights, living life to its fullest. It’s a unique language and an extra set of superpowers that none of us ever thought we would possess, but do anyway because it can literally mean the difference between life and death during tense moments for ourselves or our loved ones.

Diabetes isn’t something that happens to just us; it’s something that happens to all of us. All of us in this community are affected by the successes and frustrations that each of us experience every single day of life with a disease that is with us every single day. It is right that we commiserate in the sadness of a high A1c result or the passing of a close friend. It is equally right that we rejoice together in goals met, children raised, and new technology that makes us safer. Having to live with diabetes is the worst part about my life. Getting to live with diabetes people in my life makes me a better person.

“When I am with a group of human beings committed to hanging in there through both the agony and the joy of community, I have a dim sense that I am participating in a phenomenon for which there is only one word… glory.” – M. Scott Peck

“I have found the paradox that if I love until it hurts, then there is no hurt, but only more love.” – Mother Teresa

Communities are not buildings or monuments or parks. They’re made up of people. Our shared situation and our singular desire to compassionately relieve and delay and eliminate the burden of diabetes unite us as a community in a way few other things can. As each new day dawns, I take solace in the fact that even though my pancreas is faulty, my heart is full.
 

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