Tag Archives: diabetes

Advocates: You are making a difference.

June 20, 2014 – 9:28 am

I was riding down on the elevator after another day at work, when I heard something I’ve never heard there before. I saw him looking over at me, as I was leafing through the latest Baseball Hall of Fame publication, when he said…

“Is that… an insulin pump?”

There are roughly a thousand people who come and go from the building I work in each day. I’ve had the same insulin pump attached to me for over four years now. But no one has ever mentioned it or asked me about it before. In fact, none of my co-workers noticed it at all unless I mentioned it to them, even though it’s clipped to my belt and the tubing hangs out everywhere.

Anyway, I said yes, and he mentioned how he’s dealing with elevated glucose recently. He didn’t say Type 2, but as we spoke I surmised (maybe I shouldn’t have) that Type 2 is what he’s dealing with. I should mention that he’s very fit… way fitter than me… and he’s trying to find out everything he can about how to control his BG, and he wanted to ask me about my pump. We talked about our experiences a little while longer, and then both of us, without any prompting, practically blurt out the same things: Diabetes is weird, and it doesn’t act the same every day. A lot of people think that kids are the only ones with Type 1, and only overweight, unfit people have Type 2.

This struck me not so much because it’s true (which, sadly, it is), but because of the realization that times have changed if a near stranger understands this early in his (possibly) diabetic life.

Hey, there are still plenty of uninformed individuals out there, and we seem to remember who they are. Or what they say. But what about this guy? He hasn’t let anyone sell him a bill of goods. The information he’s getting is right, and he’s comfortable sharing.

Don’t get me wrong. I still saw the look in his eyes. The look that says he’s unsure how this is all going to turn out. Even when we’re riding high on the cusp of a sub-seven A1c or a Dexcom no-hitter, we’re still terrified of the possibility of complications and an early death.

But I was quite encouraged by the fact that someone took the initiative to find out more about what was happening to his body, and the information he gathered seemed to be pretty good so far.

We’re far from a perfect world where all People With Diabetes are accepted and treated with empathy and support, rather than derided and given misinformation. But every once in a while, it’s really nice to see that the message is getting through. So to all of you Diabetes Advocates out there working hard to bring a positive and true message to the diabetes landscape: Know that the word is getting through. Keep up the good great and amazing work.
 
 
”So shines a good deed in a weary world.”
Gene Wilder, Willy Wonka & The Chocolate Factory
(paraphrasing William Shakespeare, from The Merchant of Venice)
 
 
Diabetes Hands Foundation is offering a one day advocacy MasterLab on July 2nd at the Orlando World Center Marriott in collaboration with Children with Diabetes.

Registered participants in CWD’s Friends for Life conference are welcome to join the MasterLab as part of their FFL experience at no additional cost. Separate registration for the MasterLab is required.

Stand alone registration for the MasterLab is $50 per person.

Registration is free if you’re already registered for Friends For Life.
 
 
 

By StephenS | Posted in Advocacy | Also tagged , | Comments (3)

Like these links: Spreading the DOC Love.

June 18, 2014 – 12:30 pm

Is it just me, or are you cray-cray busy too?

We’ve got visitors this week (Maureen’s friend and fellow Type 1 Mary Beth and her family), and a few other commitments too. As a result, I haven’t had time to really write this week. It’s been even longer since I’ve felt like I’ve caught up on my D-blog reading.

I still haven’t fully caught up on that, and I’ve also realized that it’s been quite a while since I turned you on to some terrific insights from the fabulous Diabetes Online Community.

Also, I’d like to ask you for something new on these posts: Have you read something that moves you lately? How ‘bout you share that in a comment below so we can all get a look at it? Now… without further ado, here are some things for you to chew on this Wednesday:
 
 
The writer over at Running Without Sugar has a wonderful take on something she read in a T1D forum, what it says about us, and how important it is for us to keep trying and never give up:
http://runningwithoutsugar.wordpress.com/2014/06/17/cracked-image-of-ourselves/
 
 
Rhonda at FifteenWaitFifteen is getting closer to undergoing gastric sleeve surgery. This is a very brave thing she’s doing, and it’s something I’ve rarely read about, and I’m glad she’s documenting what she’s going through. Here are a few posts to help you get up to speed on her experiences:
http://fifteenwaitfifteen.com/2014/01/06/lots-and-lots-and-lots-of-stuff/
http://fifteenwaitfifteen.com/2014/06/11/liquid-its-whats-for-lunch/
http://fifteenwaitfifteen.com/2014/06/13/3-days-in/
 
 
Scott Strange has an interesting take on the idea of being cared for, then being the caregiver yourself, then being cared for again as we go through the stages of life with diabetes:
http://strangelydiabetic.com/2014/05/27/future_is_now/
 
 
Have you been an insulin pumper for a while? If so, I think you’ll find some familiar themes in Vicki’s first-hand account of her first week with an insulin pump:
http://vickisnotebook.blogspot.com/2014/06/pumping-insulin-first-week.html
 
 
Finally, a feel-good story that involves biking, nature, and a memorable quote. Enjoy this from Moira McCarthy at Despite Diabetes:
http://www.despitediabetes.com/what-i-learned-on-my-ride-training-year-three-the-one-with-the-fisherman-and-the-feathers/
 
 
Enjoy your hump day… hope the rest of your week is as pleasant as it gets. And don’t forget to leave a comment linking your latest favorites!
 
 
 

By StephenS | Posted in Like these links | Also tagged , | Comments (3)

Perspective.

June 16, 2014 – 9:59 am

I had one of those conversations last week. I was talking about my recently completed clinical trial, and I was going into too much detail. It’s pretty clear to me that the person I was speaking to thought participating in the trial was nice. But what was being studied (artificial pancreas) didn’t interest them in the least.

I blame that on me. If you’ve participated in the Diabetes Online Community for any length of time, you probably know how keeping up with every last thing can take up a lot of your time. But have you thought about how it changes your perspective?

This writer thinks about it from time to time. I’m not so worried about the DOC taking up all of my time. I manage that as well as I can, sometimes great, sometimes not so great. That’s okay… that’s life.

What this writer is more personally concerned about is in translating my story for the masses. Not so I can get a T.V. movie about my life produced, or anything like that. More in the sense that, as an advocate for people living with and affected by diabetes, I need to find a way to connect the Average Joe with my story and your story.

Diabetes cost the American economy 245 billion dollars in 2012. That impacts the lives of people not living with diabetes in many ways. Insurance costs that increase because of more hospital stays that happen due to test strips being inaccurate, or because we don’t have a device that will safely help keep us from going low overnight. Additional costs to the patient for drugs that are amazingly expensive but absolutely necessary. Increased absences from work or reduced productivity due to any number of ways that diabetes tries to kick us every day.

Average Joe doesn’t need to know how an insulin pump or continuous glucose monitor or artificial pancreas works, but they need to understand why pumps and CGMs and artificial pancreas development is so important. I need to communicate the story of how improving the lives of people living with diabetes matters to everyone. Because it does. Part of my job as an advocate is to connect the dots, regardless of the level at which your pancreas functions (if it does at all).

So I’ve reached one of those points where I need to pull back a bit and think big picture. It’s not always about how the person with diabetes identifies with my story. Sometimes it’s about how diabetes affects someone else’s story, whether they realize it or not. Because it does.

I’m definitely a work in progress.
 
 
 

By StephenS | Posted in Advocacy | Also tagged | Comments (1)

Things I wish I had.

June 13, 2014 – 9:19 am

I see another multi-millionaire has sprung up this week, thanks to a winning Powerball ticket sold in Knoxville, Tennessee (I didn’t even have to look up how to spell Tennessee—got it right the first time!).

Scoring the winning ticket for the Powerball or Mega Millions jackpot would be sensational—a life changer for myself and my family. It’s definitely one of the things I wish I had. What are some of the other things I wish I had? Hmmmm……
 
 
– I wish I had a working pancreas. That goes without saying, right? Top of the list, every time.

– I wish I had the ability to know where my BG was trending without drawing blood. Not in that “I’ve been to the bathroom three times in the last half hour, I must be high” kind of way. Just through osmosis, if that’s the right definition of the word.

– I wish I had the knowledge and the time and the money to devote my life’s work toward making life easier for People With Diabetes. I’d start with dual objectives: 1) Development of a bona fide, foolproof artificial pancreas system that’s so inexpensive, all insurance plans would cover 100 percent of the cost; and 2) An education system for people not living with diabetes, so terms like “Diabetes Police” and “You can just get rid of it with diet and exercise, right?” would be a thing of the past.

– Third objective: Heal the rift between some members of the Diabetes Community who hate on those not living with their type. Theme: They’re All The Bad Kind… So Be Kind. (sorry, it’s the first thing that popped into my head)

– Fourth objective: Provide everyone living with or affected by diabetes with exactly as much support as they need, when they need it. This would include professional help where necessary, and access to resources wherever a person is, even if they’re not at home. This includes people in countries with limited or no access to insulin. Why can’t we?

– I wish I could go to every kid fighting their way through their teenage years while living with diabetes, put my hand on their shoulder, and let them know that they are more than worth every single difficult thing they’re going through. It’s okay to love yourself, kids. Just the way you are right now. Never give up. Never give up. Never give up.

– I wish I could develop a plan, like a Ready.gov plan, that would allow PWDs to gather all of their important information in one place, then share that data immediately at critical times and places like hospital emergency rooms, diabetes camp, and schools. I’ve been thinking about this kind of thing for a while. Why can’t we?

– I wish I could fix our healthcare system in America. I could do it too, if I also had the ability to get lawmakers, healthcare systems, drug companies, device makers, and a host of others to realize that patients are people, and corporations aren’t.

– I wish I had the ability to eliminate all middle-of-the-night hypoglycemic episodes, for everyone, forever.

– I wish I had the ability to make insulin unnecessary while swimming. Or showering. Or anything water-related. Never again would someone have to ask “Are those waterproof?”.

– And world peace. Because: Why can’t we?
 
 
Now… what are some of the things you wish for?
 
 
 

By StephenS | Posted in Out Of the Box | Also tagged , , | Comments (5)

(Not quite) Wordless Wednesday.

June 11, 2014 – 9:52 am

It’s early June, and where I live that means the garden is starting to deliver on the hopes from early Spring.

Here are a few shots of my garden, an extra planter where we’re growing some greens and oregano, and some of the bounty we’ve harvested already. I’ve got a veggie garden with two kinds of tomatoes, jalopeno and poblano peppers, green beans, three kinds of lettuce, spinach, and red potatoes (growing under the lettuce). In the planter there is red leaf lettuce, radicchio, and oregano. There’s also a separate herb garden that includes some strawberry plants. Some of this, as you can see, has been harvested and eaten already. Included in the photos is Boomer the Dog who, like all the other dogs who have ever lived with us, absolutely loves green beans.

So far, everything is growing well. But something keeps eating my squash blooms! They’re in a separate garden not pictured here. As soon as they get blooms, something comes along at night and eats them before they can grow anything edible. If you have any ideas what it might be and what I might be able to do about it, let me know. And please excuse the weeds you see, which I haven’t been able to trim/pull/Roundup yet.

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Happy Wednesday!
 
 
 

By StephenS | Posted in Wordless Wednesday | Also tagged , , | Comments (6)