Monthly Archives: June 2014

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 | 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 | 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 | 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.

DSC01614

DSC01615

DSC01616

DSC01611

DSC01612

Happy Wednesday!
 
 
 

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

Clinical Trial Conclusion. What I learned.

June 9, 2014 – 9:53 am

This is one in a series of posts detailing my participation in a clinical trial with an artificial pancreas element. I’m writing about this to chronicle my experience, and because if I were reading, I’d want to know about every aspect of what was going on. For more on this clinical trial, click here and here.

Last week were the final two days of my clinical trial in Virginia. This week we went through everything we went through the previous week, and everything at the same time as last week. So if I ate breakfast at 7:00 a.m. the first week, breakfast the second week was at 7:00 a.m. And it was the same breakfast. Everything, food, exercise, the whole thing, exactly like the previous week. The real difference is that in the first week, the algorithm running my artificial pancreas system was based on the data collection week I had gone through earlier in the trial. The second week, the algorithm was based on my own pump settings. The idea was to compare the special (or experimental) algorithm with something based on what I work with every day. Note: I believe this explanation is different from what I had written before. Sorry about that. Sometimes I don’t get a complete, exact idea of what is transpiring until it transpires.

I have no idea how everything turned out. Which algorithm worked better? I don’t know. And I don’t care. Because what worked best doesn’t matter. Gathering data is what matters in a trial like this. Like an A1c, the scientists working on this artificial pancreas solution need data to help them decide how to improve the device going forward. Good or bad? There is no bad data.

DSC01607

What was it like being hooked up to an artificial pancreas device twice in two weeks? It was… interesting. It wasn’t as “set it and forget it” as I had convinced myself it would be. And that’s one of the takeaways from this trial that really hit home for me. No matter how my external organ will perform for me in the future, I will still need to be an active participant in managing my diabetes. It’s just that an AP device would make things easier, in theory, while providing me extra protection from dangerous lows, particularly overnight.

The other big takeaway for me has to do with how an AP system is designed to work. The idea of small micro-boluses every five minutes sounds great, until your glucose starts to get up into the 200 mg/dL range. When I see a number like that a few hours after a meal, I immediately want to perform a correction bolus. A full correction, to get my BG down to the 100 mg/dL target. So in my case, if my number was 220, I would bolus three units of insulin to bring me back down to 100.

DSC01610

But an artificial pancreas doesn’t work that way. First of all, instead of trying to correct that number to exactly 100, maybe it would try to correct that number to a range instead. That might require a different amount of insulin. Also, my device was not going to administer all that insulin at once. It’s still going to give me small amounts, every five minutes, until I softly land in a good range (for this study, that was between 80 and 140). I think the largest amount I was given at any time (other than meals) was 0.25 units. When you look at your CGM graph on the artificial pancreas, you’ll see gentle rolling hills, instead of high mountains and deep valleys. I love the thought of that. But for me, not attacking a higher number immediately will take some getting used to. Really, it will require a completely different way of looking at my diabetes.

So in the final analysis, scientists learned something from this clinical trial (I hope), and I think I learned a lot too. When an artificial pancreas device actually hits the market at some point, I’ll be viewing it through an entirely different lens. And that’s okay. Because the older I get, the more I realize that I’m not perfect, and opening myself up to different ways to manage my disease could possibly lead to something great in the future.
 
 
——————————————————————————
 
 
Here once again is my push for clinical trial participation. Clinical trials meet a very necessary need when it comes to developing drugs, devices, and therapies that will help all People With Diabetes lead better lives. I strongly encourage you to think about volunteering for a clinical trial.

The USA’s National Institutes of Health has a complete list of clinical trials taking place all over the USA, and even some outside of my country. To find them, go to www.clinicaltrials.gov and enter “diabetes” into the search box. A recent search found 11,175 studies.

In the United Kingdom, the UK Clinical Trials Gateway is a great resource for finding out about trials happening all over Europe. To perform a search and find out more, go to http://www.ukctg.nihr.ac.uk

JDRF has a very helpful web page that lists multiple sources for registering and finding out about clinical trials. Just go to www.jdrf.org/research/clinical-trials/ to find out more.

To read more about the University of Virginia’s Center for Diabetes Technology, including staff bios and more on Artificial Pancreas technology, visit the center’s website at www.medicine.virginia.edu/research/institutes-and-programs/cdt/the-center-for-diabetes-technology-at-uva.html
 
 
 

By StephenS | Posted in Artificial Pancreas, Clinical Trials | Tagged , , , | Comments (9)
%d bloggers like this: