Scott's Diabetes

DBlog Week – Day 7 – Diabetes Wild Kingdom (wildcard)

Scott K. Johnson — Sun, 19 May 2013 16:00:22 +0000

Topic for today:

I’m pulling another wildcard here. The topic I’m skipping is about sharing some new blogs and/or blog posts I’ve read and loved. Finding new blogs to follow is actually one of my favorite things about Diabetes Blog Week — but I’m terribly behind. I’ve been travelling this past week and simply haven’t been able to keep up. But don’t worry! I’m determined to look through the links and find some new friends! It just might take me a while.

So – the wildcard topic I’m using instead:

Click for the Diabetes Wild Kingdom Wildcard Link List
What is the ideal diabetes service animal? Think beyond the obvious and be creative in explaining why your choice is a good one. For example, maybe a seal would make a good service animal – it flaps its flippers and barks every time you get a good blood sugar reading! (Thanks to Tristan of Based on a True Story for this topic suggestion.)

***

I think I’d want a creature that was super tiny. Something that could be overlooked, easily concealed, not even noticeable in most circumstances. I could travel easily with it, and even have it with me when I’m exercising.

But this tiny buddy would have to be able to get my attention if needed — even if I am going low and starting to lose it. Maybe a diabetes alert inchworm that could move fast (to get from my pocket to my ear), be self-sufficient amongst my keys, chapstick, testing stuff, and other stuff that is usually in my pocket…. wait! No! Not pocket! I’d wear some super cool necklace with an inchworm home lanyard! That’d be much better!

My inchworm would also posses super strength and be able to fetch me a juicebox if needed. It would also be super smart and able to call 911 from my phone.

Yep. A diabetes alert inchworm. That’s what my brain came up with.

What?

DBlog Week – Day 7 – Diabetes Wild Kingdom (wildcard) is a post from: Scott's Diabetes

DBlog Week – Day 6 – Dream Diabetes Device (wildcard)

Scott K. Johnson — Sat, 18 May 2013 15:00:31 +0000

Topic for today:

Click for the Dream Diabetes Device Wildcard Link List
Back by popular demand, let’s revisit this prompt from last year! Tell us what your fantasy diabetes device would be? Think of your dream blood glucose checker, delivery system for insulin or other meds, magic carb counter, etc etc etc. The sky is the limit – what would you love to see?

***

I would love some communication and integration.

I can enter a detail into my phonebook and it’s instantly available on every device I have, but when I check my blood sugar I have to manually enter it into three different devices (pump (for correction), CGM (for calibration), and logbook (for recordkeeping).

This came up during the DSMA Chat on Wednesday:

Q3. Communication. I feel super connected until my day runs into a diabetes device – then I’m suddenly back in 1985. #dsma

— Scott K. Johnson (@scottkjohnson) May 16, 2013

DBlog Week – Day 6 – Dream Diabetes Device (wildcard) is a post from: Scott's Diabetes

DBlog Week – Day 5 – Freaky Friday

Scott K. Johnson — Fri, 17 May 2013 13:38:42 +0000

Topic for today:

Click for the Freaky Friday – Friday 5/17 Link List
Just like in the movie, today we’re doing a swap. If you could switch chronic diseases, which one would you choose to deal with instead of diabetes? And while we’re considering other chronic conditions, do you think your participation in the DOC has affected how you treat friends and acquaintances with other medical conditions? (Thanks to Jane of Jane K. Dickinson, RN, PhD, CDE and Bob of T Minus Two for this topic suggestion.)

***

I was recently talking with a friend of mine about this! If I had to choose from all the endocrine conditions known today, I think I’d pick a low thyroid.

Why?

Once diagnosed, it seems like a relatively easy problem to fix! I actually DO have low thyroid (it’s common for our kind – did you know that?). I get lab tests periodically, and I take a cheap pill each morning to fix it.

I totally stole this answer from Wil. He mentioned something similar while we were together at AACE in Phoenix recently.

DBlog Week – Day 5 – Freaky Friday is a post from: Scott's Diabetes

DBlog Week – Day 4 – Accomplishments

Scott K. Johnson — Thu, 16 May 2013 13:00:06 +0000

Topic for today:

Click for the Accomplishments Big and Small -Thursday 5/16 Link List
We don’t always realize it, but each one of us had come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you’ve made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small – think about self-acceptance, something you’ve mastered (pump / exercise / diet / etc.), making a tough care decision (finding a new endo or support group / choosing to use or not use a technology / etc.). (Thanks to Hilary of Rainie and Me for this topic suggestion.)

***

This topic is actually much harder than it seems.

You know why?

Because when you live with diabetes, or care for someone with diabetes, your self-critiquing tendencies get amplified a whole bunch.

High blood sugar? What did I do wrong?

Low blood sugar? What did I do wrong?

Perfect blood sugar? Won’t be there for long!

With diabetes we always have to plan for the worst case scenario. It’s a survival mechanism! Can you imagine what it does to your mind when you are constantly planning for the worst?

But we have to. Can we leave the house without planning and preparing for the worst low blood sugar possible? No! Can we go on a trip without planning for the most catastrophic pump failure ever? No!

We have to be prepared. We have to always be prepared. Our very lives depend on it — LITERALLY!

So with that in mind – I am going to say that my biggest accomplishment has been learning to be more kind to myself.

DBlog Week – Day 4 – Accomplishments is a post from: Scott's Diabetes

Diabetes Hope Conference – The Backstory

Scott K. Johnson — Wed, 15 May 2013 15:42:53 +0000

I am excited to share some background on the upcoming Diabetes Hope Conference. Where did the idea come from? What do we hope to accomplish? Who’s behind this thing?

We hope we’ve answered most of those questions – ‘About the Conference.’

“We thought that this lack of hope should change. We thought that someone should take up the mantle of hope and at a minimum, start creating hope by getting people to talk about complications like DPN. By talking about it amongst each other, with members of the medical community and yes, even with the pharmaceutical companies that supply the devices and medications for people with diabetes, we can share knowledge. And it is our belief that knowledge is the first step towards hope.”

It’s just another example of why I love working with these guys.

I appreciate all of the help the community has given in helping us spread the word.

If you haven’t signed up yet – it’s not too late!

Diabetes Hope Conference – The Backstory is a post from: Scott's Diabetes

DBlog Week – Day 3 – Memories

Scott K. Johnson — Wed, 15 May 2013 13:39:35 +0000

Topic for Today:

Click for the Memories – Wednesday 5/15 Link List
Today we’re going to share our most memorable diabetes day. You can take this anywhere…. your or your loved one’s diagnosis, a bad low, a bad high, a big success, any day that you’d like to share. (Thanks to Jasmine of Silver-Lined for this topic suggestion.)

There are so many memories to choose from!

I’m going to choose the day of my biggest athletic achievement yet – riding 102 miles for the ADA Tour de Cure last spring.

It was one of the hardest days of my life, complete with mechanical problems, self-doubt, stubborn determination and the willpower to just keep pushing forward.

There were many points where I wanted to quit, and maybe even a few moments where I felt like I could ride forever.

The thing I remember most about that day is wanting to quit but not letting myself go there. I think diabetes is like that sometimes. It seems too hard, it seems that I can’t do it anymore, but I don’t let myself go there.

I find a way to just keep going, one blood sugar test at a time.

DBlog Week – Day 3 – Memories is a post from: Scott's Diabetes

DBlog Week – Day 2 – We, The Undersigned

Scott K. Johnson — Tue, 14 May 2013 13:00:29 +0000

Topic for Today:

Click for the We, The Undersigned – Tuesday 5/14 Link List
Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) – get creative!! What are you trying to change and what have you experienced that makes you want this change? (Thanks to Briley of inDpendence for this topic suggestion.)

My petition goes out to those who have thought about starting a blog/vlog/tumblr/twitter/.

This is short and sweet.

Someone out there needs your story. They need YOUR story. You are the voice that can help them turn the corner.

Ask us for help if you need it. I think it’s safe to say that we’re all more than happy to help a new voice join the choir.

Don’t overthink it.

Just do it.

DBlog Week – Day 2 – We, The Undersigned is a post from: Scott's Diabetes

DBlog Week – Day 1 – Share and Don’t Share

Scott K. Johnson — Mon, 13 May 2013 22:18:20 +0000

Topic for today:

Click for the Share and Don’t Share – Monday 5/13 Link List.
Often our health care team only sees us for about 15 minutes several times a year, and they might not have a sense of what our lives are really like. Today, let’s pretend our medical team is reading our blogs. What do you wish they could see about your and/or your loved one’s daily life with diabetes? On the other hand, what do you hope they don’t see? (Thanks to Melissa Lee of Sweetly Voiced for this topic suggestion.)

I’m learning to understand how things work. I’m learning that doctors and clinicians are trained to disassociate, and that separating the person from the patient helps them treat problems with a clinical clarity that can sometimes be muddied if the relationship gets in the way. I get that, and try to keep it in mind as I interact with my care team (who are pretty wonderful, most of the time).

But I do want them to see how hard I try. I want them to know that most of the time I try my best to manage my diabetes and overall health. I want them to acknowledge the effort I put in, even when it doesn’t yield the expected results.

What I’m embarrassed to share are the days where diabetes gets the best of me emotionally. Those are the days I just “check out” and often drown my sorrows in carbohydrates and destructive diabetes behavior.

As I think about it though, they really need to see those days too. They need to understand that when you live with something that is so difficult to manage, and takes so much work and energy, and grinds on you every minute of every day, and will do so forever, that there are going to be days like that.

DBlog Week – Day 1 – Share and Don’t Share is a post from: Scott's Diabetes

Lilly Diabetes – Making Insulin

Scott K. Johnson — Fri, 10 May 2013 12:25:53 +0000

I can cross “tour an insulin manufacturing facility” off my bucket list.

It was absolutely mind-blowing.

There is a lot of science involved, much of which I am not quite bright enough to understand. But the basic idea is that they start with some E. coli bacteria that is modified to produce insulin as it grows, then it is harvested, the insulin is stripped out, purified, packaged up and delivered to us.

One of the best places I could find that talks about how cells work actually used insulin as an example of biotechnology. From an article at HowStuffWorks.com:

To create insulin inexpensively, the gene that produces human insulin was added to the genes in a normal E. coli bacteria. Once the gene was in place, the normal cellular machinery produced it just like any other enzyme. By culturing large quantities of the modified bacteria and then killing and opening them, the insulin could be extracted, purified and used very inexpensively.

That makes it sound so simple, and I find it ironic that they used the word “inexpensively” more than once. There was nothing inexpensive about what I saw. Maybe it’s a relative term? Comparing it to the process of killing cows and pigs and harvesting insulin from their pancreases? On that note, I had trouble picturing the land we were visiting being a large slaughterhouse no more than thirty years ago.

I also learned that the first insulin made using this method of inserting human genetic instructions into a bacterium at Lilly was made possible through a partnership with Genentech (now owned by Roche).

Big and Small

I couldn’t wrap my brain around the quantities involved, so I’m going to describe it using very general ideas.

Imagine growing grass on a field the size of a few football fields. You start with nothing but space. You get the soil and prepare it, plant the proper seeds, then nurture the growing seeds until they’ve grown up into tall stalks of grass. But only a tiny portion of that grass stalk is the part you need. Imagine the entire grass stalk representing 100%, but you only need the 33% piece and 35% piece. The rest is useless to you (but you wouldn’t have those two specific parts without the whole).

Now you harvest each blade of grass and separate the parts you need from the parts you don’t. Then within that 33% piece and 35% piece there are impurities which need to be stripped off and discarded, but that purification process costs you some expensive chemicals and a ton of time.

After a couple of months and three football fields of grass, you end up with a finished batch of product that can fit in your briefcase.

You can run the whole process again, but don’t forget that your soil is only good for a limited number of growths before it too needs to be discarded and replaced.

It’s an incredibly complicated and expensive process. Getting us to appreciate the cost and complexity was surely the main idea behind the tour.

I’m convinced. I appreciate it.

Lilly Diabetes – Making Insulin is a post from: Scott's Diabetes

Lilly Diabetes – Connecting the Dots

Scott K. Johnson — Fri, 10 May 2013 00:08:25 +0000

Lorraine Sisto, Mike Hoskins, Kim Vlasnik, John Lechleiter, PhD, Adam Brown, Ruth Gimeno, PhD, Scott Johnson, Leighann Calentine, David Moller, MD, George Simmons, Kris Freeman, Cherise Shockley, Scott Benner, Kelly Kunik, Kelly Close, Bennet Dunlap

I recently returned from a short trip to Indianapolis, IN for a visit with Lilly Diabetes*. They hosted a summit with about a dozen people from the diabetes online community and gave us a chance to learn more about what they’ve been up to since the last meeting.

I was pleased with the meeting and felt they did a great job hosting. The group was small, which made it more intimate and easier to stick to the agenda. They made an incredible number of interesting and important people available to us. Most of these folks not only presented information, but were also around and available for further discussion through the summit.

Some of the people we spoke with (in no particular order):

John Lechlieter, PhD – Chairman, President, and CEO
Patty Martin – Senior Director, Lilly Diabetes Strategy & Operations
Kelley Murphy – Communications Director, Lilly Diabetes
Julie H. Williams – Communications Manager, Lilly Diabetes
Matt Caffrey – Product Brand Director
David Moller, MD – Vice President, Endocrine and Cardiovascular Research and Clinical Investigation, Lilly Research Laboratories
Ruth Gimeno, PhD – Chief Scientific Officer, Diabetes Drug Hunting Team
David Kendall, MD – Distinguished Medical Fellow, Global Medical Affairs, Lilly Diabetes
Kevin Cammack – Senior Director, Brand Marketing, Insulins
Deidre Ibsen – Global Brand Development Leader
Mitch Armbruster – Director, HR-Wellness and Productivity
Fionnuala Walsh – Senior Vice President, Global Quality
Mario Clarizia – Director of Operations, Indy API Insulin
Matt Edwards – Director of Operations, Indy Parenteral
Brian Augspurger – Manager, Device Operations

I don’t take lightly the fact that many of these people have incredibly busy schedules, yet shared their time so graciously with our group.

Corporate Responsibility

We learned some more about the work Lilly does in the diabetes community. This work often goes unnoticed and unmentioned, in my opinion, and it was good to hear more about it.

Did you know:

Lilly Diabetes has donated more than $20 million in insulin and other diabetes medicines, education materials, volunteers, scholarships, and special guests to camps run by the ADA in the past decade?
In February of 2013 Lilly Diabetes donated $90,000 to the ADA 2013 camp scholarship fund?
Lilly Diabetes has committed to providing more than 800,000 vials of insulin to the IDF’s Life for a Child program between 2008 – 2013?
Lilly Diabetes supported the Diabetes Scholars Foundation with $100,000 donation in 2013 (second year in a row)?
The Lilly NCD Partnership is providing over $30 million over five years to fight the rising burden of non-communicable diseases (of which diabetes is a big component) in developing nations?
Lilly Diabetes is working to identify care gaps, and partner with organizations, like Project Hope, to help fill those gaps?
Lilly has a tool, Lilly TruAssist, to help people find assistance programs?
Lilly also participates in the Partnership for Prescription Assistance (PPARx), the pharmaceutical industry’s program to make it easier to find patient-assistance programs?

These are just a few of the items that grabbed my attention. Lilly publishes a report on corporate responsibility which covers these, and many more things, in more detail.

Disney Partnership

Lilly Diabetes has been working with Disney Publishing to bring educational resources about life with type 1 diabetes to teens and youngsters. They have seven books available now, with a handful of new titles launching at CWD’s Friends for Life conference in July.

These books have traditionally been available through doctor’s offices and healthcare providers, which we complained about during last year’s meeting. We wanted them easier to get. What good is it to have a Disney character with type 1 diabetes (c’mon, you know that’s pretty incredible…) if the books are too hard to get?

I was pleasantly surprised. Lilly is working on making their library of type 1 diabetes books viewable online for free. I think it’s a great step in the right direction. They say this should happen late in 2013. They are also working to make the print books available to a more diverse audience, and are translating the books into 17 languages for 18 different countries outside of the United States. Impressive, no?

Olympic Athlete!

Didn’t quite turn out – but still pretty cool!

Three time Olympian and professional cross-country skier, Kris Freeman, dropped in for the afternoon!

We enjoyed a box lunch and downtime visiting with him, asking questions about everything from the Olympics to how his insulin needs change from day to day. It was amazing to me how this ultra-athlete struggles with many of the same things we all do. He’s a regular guy trying his best to manage his blood sugars, just like all of us.

Kris was super laid back and very down to earth. It was a real treat being able to visit with him for the day.

Thoughts?

I was actually pretty impressed with what Lilly has done. Things take a really long time at a company like Lilly, and I feel that they have made incredible progress in the past year. I hope it’s a good indication of them picking up speed and momentum around positive change.

My next post about the trip will talk about the amazing experience of touring the insulin manufacturing facility. It was an absolutely mind-blowing experience.

*Disclosure: Lilly Diabetes paid for my travel, lodging, and food during my trip. I was also given a gift bag that contained snacks, mints, hand sanitizer, a book with some local tourist/history information, and a picture frame for group photos.

Lilly Diabetes – Connecting the Dots is a post from: Scott's Diabetes