Wordless Wednesday. Make a list.

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I’ve got the day off today. After checking my desk drawer before I left yesterday, I realized I need to take a little time to get replacements for the juice boxes I’ve been going through lately. And maybe some peanut butter crackers. Maybe some candy too.

And where did that plastic knife come from?
 
 
 

Innovation is good. Innovation WORKS.

My co-workers and I were talking the other day about our recycling, and one of them mentioned that they now put out more recycling every week than they put out actual garbage. I’ve actually lived in places where a couple of decades ago, there were people arguing that recycling pickup wasn’t worth the cost to have it picked up on a regular basis. Now many of us are throwing out less than we’re recycling. Where would we be if we were still throwing everything away?

Just like when there was no such thing as recycling newspaper, plastic and glass bottles (heck, I can remember when all bottles were glass), cardboard, and metal, there was a time when performing a blood glucose check at home was a pipe dream. There was a time when an insulin pump (no injections? get out!) was something out of a sci-fi novel.

But lo and behold, over time, those devices not only became a reality, they’ve become a fixture in our diabetes lives. New things do get developed. New technology emerges. New therapies are perfected.

That’s why I get a little sad when I hear people say bad things about the artificial or bionic pancreas. It’s disheartening to hear someone dis remote monitoring of their CGM.

The reality is that these two ideas are coming to fruition at a rapid pace. We already know that artificial/bionic pancreas technology, when filtered through an appropriate algorithm, functions far better, with far less effort, in a safer way, than the average patient does on their own. Side note: Can I just refer to it as artificial/bionic pancreas now? Even now, after years of development and testing, this technology is changing further to include a bihormonal (insulin and glucagon) solution. Can you tell me you were thinking about that ten years ago?

And what about remote monitoring of your CGM? We know that Nightscout has already rolled out a solution that can allow parents to send their children to school or to sleepovers with a little less apprehension. Adults can use the CGM In The Cloud to keep their family members in the know, on a real-time basis. Was this on your list of cool diabetes ideas six or seven years ago?

I know it takes a long, long time for products to come to market. But I know that with the help of technology and some extremely smart cookies, new diabetes devices and software are going from concept to go live faster than ever before.

I know that there is still so much about diabetes that will remain dangerous, even after the latest innovations come to our doorstep. But I also know that fear of what still exists is not worth not taking steps to erase some or all of the fear of dangerous nighttime lows.

I know that a cure is still out of our grasp. But I also know that I am willing to live with incremental improvements in care and delivery systems until a cure becomes reality. And I am not willing to wait on everything until a cure is within reach.

I don’t believe I’ve ever written this before. But for the record, I am 1000 percent behind the #WeAreNotWaiting movement. Where last year there were only a few isolated pockets of innovation and collaboration in diabetes technology, there are now visible signs that collaboration and innovation are occurring and are at work right now. And that leaves me thinking that with the speed of technology, #WeAreNotWaiting will soon go from a fringe idea of faster implementation of new ideas, to an inventive steamroller that eventually leaves non-believers thinking #WeShouldn’tHaveWaited.

I was not prompted by anyone to write anything on this subject, but I was inspired by this blog post, and this one too.
 
 
 

Meet Delia Whitfield.

It is my pleasure and honor today to introduce you to Delia Whitfield, Senior Outreach Manager of the Chesapeake and Potomac chapter of JDRF. She’s also Outreach Captian for the entire Mid-Atlantic region and Florida too, working with a large number of outreach staff. She’s a major part of getting the D.C.-area JDRF Research Summit off the ground every year. Her role is an important one, and it covers a huge population and geographic area. Did I mention that she’s also living with Type 1 Diabetes? On top of that, she’s one of the most positive people you’ll ever meet. It’s just impossible to walk away from a conversation with Delia without feeling better. I think her story is a good one, and it provides an example for others who might be thinking about making a career in the diabetes world.

I was able to chat with Delia by phone recently, and this is part of what we covered.

Delia… anything you want to tell us about your diagnosis?
DWhitfieldI was diagnosed when I was 21 and about to graduate college. I had all of the typical symptoms leading up to my diagnosis: thirsty, tired, and hungry. I was losing a lot of weight to the point that people were concerned and asking me if I was eating enough. One of those people was my roommate, who I vividly remember in the few weeks leading up to my diagnosis, was giving me funny looks every time I would make my regular late-night runs to the grocery store for more OJ and snacks! The final straw was when I went with some friends to a concert and had trouble seeing the band clearly. We were in the second row. The next day, I called to schedule an appointment with an eye doctor. It was a Friday and I remember telling the woman that I couldn’t go all weekend without seeing well. They squeezed me in that afternoon. At the appointment, I told them about how I had been feeling and that I was worried. They changed my prescription and sent me on my way. As I left the appointment, I called my mom, who had worked in the healthcare field for a long time. I had been telling my mom and my dad about some of my symptoms here and there, but I told her about all of them on that call and I think it hit her. She told me to go immediately the urgent care and get a finger-stick to check my glucose. I didn’t know what a “finger-stick” was, but I heard the urgency in her voice. I drove straight to the doctor’s office. It was there that I learned my glucose was over 600. They sent me immediately to the ER.

At this point, I knew it was somewhat serious. But, still, I was young and what I really wanted was to get in and out of the ER so I could still go out with my friends that evening. I hadn’t yet realized that not only did I have type 1 diabetes, but missing one night out with my friends was the least of my concerns.

So… you graduated college, and you originally went to work in the real estate industry. What eventually led you to JDRF?
After my diagnosis, I went through a pretty tough time adjusting and coming to grips with this “new normal.” I was angry. I was confused. I was scared. I was isolated. After months of my parents urging me, I finally went to a diabetes support group. I sat down and immediately realized that I not only was the only person under the age of 50, but I was also the only one with type 1 diabetes. One woman turned to me and told me that I was “lucky” because I was young enough to start eating healthy and exercising and reverse my diabetes. I left in tears, feeling worse than I felt before. If only I had “that kind,” I thought.

Thankfully, a few months later, I heard about this organization called JDRF that was dedicated to type 1 diabetes. It blew my mind that there was an ENTIRE organization dedicated to “my kind” of diabetes. I signed up to volunteer with my local JDRF chapter – the Coastal Carolina Branch (Wilmington, NC). I started going to events and helping out where I could. The chapter staff and other volunteers were awesome; I was hooked. Getting connected with the type 1 diabetes community was the single best thing that had happened to me since my diagnosis. It led me to accept my diagnosis and more importantly, it gave me hope.

Around this same time, my parents met Tom Brobson (JDRF’s National Director of Research Investment Opportunities) at a JDRF event. My mom asked him if he would be willing to talk to me since he was also diagnosed as an adult and was so knowledgeable on all things type 1. When we talked, he told me all about his personal experience with type 1 and what he does for JDRF. It was fascinating and I knew I wanted to work for JDRF. At the time, I was going back to school to pursue a nursing degree, so I just kept looking for opportunities to open up. A few months later, an outreach coordinator position opened up with the Capitol Chapter in D.C. And the rest is history.

What advice would you give to someone thinking about pursuing a career as well as managing their diabetes?
If someone is interested in a career in the diabetes field or specifically with JDRF, I would say start by volunteering. Volunteering allows you to figure out what you enjoy doing, engage and help people in the community who you can help, but it will also in turn help you. Getting connected with this community was the biggest game-changer for me not only in terms of management, but for me emotionally. Type 1 requires 24/7 attention, and takes up a ton of brain space. I didn’t realize how isolated I was when I was trying to do it on my own with no support network. I have learned some of the best tips and tricks about management from others living with T1D. I also have come to realize that for me, the balance of a good sense of humor (and not falling apart over spikes!), and leaning on others when you’re feeling a little discouraged, is huge. The biggest thing is, knowing you’re not alone! There are a number of ways you can get involved to the degree that you’ll probably know whether you’ll want to make a career of it. Everyone has different talents and strengths and I guarantee no matter what yours are, we could probably use them!

You’re Senior Outreach Manager for a big, big chapter. JDRF’s Chesapeake and Potomac chapter covers almost all of Maryland, the District of Columbia, Northern and part of Western Virginia, and a couple of counties in West Virginia. What are some of the challenges you face on a daily basis?
I think it’s making sure that JDRF has a greater presence in the large territory we serve. It’s tough knowing that there’s a large percentage of people in the type 1 diabetes community that don’t know that there are support programs (e.g. JDRF mentor program), resources (free toolkits and care kits for all ages and stages of diagnosis), and free outreach events (JDRF research summit) where they can connect with a community of people just like them. About 6 months ago, I spoke to a young adult that has lived with type 1 for 8 years, and he had never met anyone else with type 1. He didn’t have an endocrinologist and he wasn’t familiar with pumps or CGMs. I connected him with an adult mentor and he wrote me a note saying that it was “life-changing” for him. He now has an endocrinologist and recently started on a CGM! Because we do have such a large territory, we really rely on our awesome volunteers to help us get connected with their community and promote our outreach programs. We pride ourselves on working with a limited marketing budget so that we can reserve those dollars for research and advancing technology – conducting human clinical trials are very costly!

On the flip side, there are a lot of stigmas and misnomers about type 1 diabetes in the general public. Instead of looking at these situations as a challenge though, I’d call them good teachable opportunities. I think a positive spin helps me when I hear the insensitive, uneducated, or just plain ridiculous comments made to people with T1D, myself included! I was once yelled at and asked to get out of a cab because I had just given myself a shot and the cab driver did not accept “drug use” in his cab.

What are your goals for the future?
That I will be out of a job. That all of us working in the T1D community can close our doors because type 1 will be something that “used” to exist.

For me personally, I’ve finished two century rides doing the JDRF Ride for a Cure. I’d like to complete even more and do some other endurance races.

Finally… You were mentioned in Amy Ryan’s book Shot: Staying Alive With Diabetes. What was it like reading about yourself in print?
Amy is a very dear friend and an amazing person. When I first read that chapter, it was like an out of body experience! It was very humbling to read her kind words.
 
 
Delia, thanks so much for sharing with us! Your perseverance, your hard work, and your compassion for people living with and affected by type 1 diabetes is an example for all of us. JDRF, and by extension, all of us, are fortunate to have you in our corner.
 
 
JDRF could use your help in a variety of ways all year long. To find out more about how you can make a difference, go to JDRF’s volunteer page and learn more: http://jdrf.org/get-involved/volunteer/

Also, and you heard it here first: Next year’s JDRF Research Summit is once again coming to the Washington, D.C. area on March 7, 2015! Look for more on the summit as the year progresses.
 
 
 

August #DSMA Blog Carnival: Got any ideas?

This month’s DSMA Blog Carnival topic asks us to do a little thinking. Ready?

Last month, on July 21st, the DSMA Wednesday evening twitter chat celebrated its 4th anniversary! We’ve talked about a lot of diabetes-related topics, but there always seems to be more to discuss. With that in mind, let’s look back to our chat from July 16th and give some DSMA feedback. We’d like to know…
 
 
What topics are you interested in discussing during DSMA?

I’m interested in exploring what we don’t know about diabetes. Related topic: What I discovered that I hadn’t known before. I’ve lived with diabetes for 23 years. But you know what? I’ve learned a lot just in the past year. I’ve learned about new insulin pumps (still haven’t made a decision). I’ve learned a little about how algorithms driving an artificial pancreas system work. I’ve learned that medications designed with Type 2s in mind sometimes work well for Type 1s too, and vice versa.

And speaking of that…

What are two topics that you wished we talked more about?

Topic 1: Breaking down the barriers between Types.

We have more in common than we think. Let’s talk about what those commonalities are! Here are some sample questions:

– What trait does your type have that another type has too?
– What about your type makes living with diabetes difficult? (not more difficult—just difficult)
– What one thing does your type do every day that other types do?
– What’s easy about living with your type that isn’t easy about living with another type?
– If someone not living with your type were having a bad day, what would you tell them?

Topic 2: Diabetes Inspiration.

We’ve all been down into the abyss of diabetes burnout, shame, and stigma; most of us have found the inspiration to climb back up again. What inspires you? Sample questions:

– When was your last bad diabetes day?
– When was your last good diabetes day?
– Doing _____ always makes me feel better
– True or False: Having a goal always keeps me motivated to do my best
– Name a person, place, or thing that inspires you
– My advice to anyone feeling down is ________
 
 
The great thing about the weekly #DSMA chats is that this horde of people with a shared condition and their unique-to-the-patient perspective on it gets one hour every week to meet and greet, share triumphs and despairs, and interact with each other in a way that just doesn’t happen anywhere else. It’s a source of learning, camaraderie, and inspiration crammed into one little hour. And I wouldn’t miss it for the world. Talk to you Wednesday night!
 
 
This post is my July entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetescaf.org/2014/08/august-dsma-blog-carnival-4/
 
 
 

Into the time machine: If I were talking to myself five years ago…

Stephen…

I’m back. I know, I wrote to you back at diagnosis, but haven’t been in touch much since. Well, we need to talk again.

I know you’re having a really rough time of it right now. People are beating you up nearly every day with their ridiculous requests and their stigmas and their belief that diabetes is simple to manage. In case you haven’t figured it out by now… It’s not. Likewise, work has been wearing on you for a long time now, and it seems like the cloud that’s been following you around for a long time will never move away.

Well, I have some good news for you: This is going to change.

Certain events are going to occur, and it’s going to seem like it’s getting worse for a while, but trust me when I say it will get better. Like it does whenever things like this happen to you, the change will come from somewhere where you least expect it. To begin with, you’re going to finally give in and start on an insulin pump. When I look at it now, I think that may be the first time in decades you say to yourself: “I don’t give a crap what it looks like, I’m still the same person I was before I connected this thing”. About a year and a half after that, you’re going to hear the term “Artificial Pancreas” for the first time. That’s going to set off a number of feelings and journeys of discovery too. Right about this time too you’ll discover this Diabetes Online Community thing that I mentioned in that letter I sent you at diagnosis. Once you do, it’s going to set off little changes… things that you do that seem little on their own, but start to add up to being a better person who’s more connected to his outside world than ever before.

You’re going to eventually call yourself a diabetes advocate. It’s going to sound weird at first when you say that, but at some point you’ll start to reassess your viewpoint of what an advocate really is. Also, going back to those little things, you’ll start to get involved in causes that will not only help others but will also reinforce your own confidence and sense of self worth, which, let’s be honest, needs a hell of a lot of reinforcement right now. Seriously dude… you are worth more than people are saying you’re worth right now… stop hanging your head. Unfortunately, you’ll find that there are causes that need your help all the time. Don’t worry… just do what you can, when you can do it. Something is better than nothing.

For what it’s worth right now, here’s a little advice:

Stop worrying about everything all the time. You’re not 20, or 30, or even 40 anymore. You can’t fight every battle like it’s life and death. You don’t have the time, and you don’t have the energy to deal with everyone’s crap full time anymore. Let other people fight things out. Use the energy you save for something you have a passion for. I know you’re going to find that passion again soon. And there will be people who need your help. Use your powers for good.

You can learn from everyone… even the people who don’t have your best interests at heart.
People are interesting. They are not all the same. They all have something important to tell you, and they are revealing it almost all the time. Be open to listening. Be open to recognizing that it’s okay if you aren’t the foremost expert on everything. Find out how good it feels to help shine the light on someone else who deserves it. Never, ever forget to say Thank You. Over and over.

Be a little bolder.
Remember your best friend from high school? I know, you miss him. He was the kind of guy who could sell anything to anyone, and did. He was the one who, when the Russian hockey team came to town in the early 80s I think, was the only one locally to get an interview because he bought a few pair of American jeans and handed them out to the players. He made friendships in that instance, and even kept one or two of them until he died. What he did wasn’t crazy, was it? He was just saying, “I’ll try this, and maybe it will work”. That’s what you need to do. Ignore that voice that says you’re going to get yelled at for asking. If you do get yelled at, it will be an indictment of their character, not yours. And you won’t get yelled at. People might even say yes.

Be a little happier.
This is important: Enjoy the moments of happiness you’re granted when they happen. Not everything can be sunny every day. And as much as I hate to be the one to break this to you, you’re not going to live forever. So when something good happens, don’t worry about the evil that’s lurking around the corner ready to jump you. That’s old school Stephen-think. Just enjoy the happiness while it lasts. It’s going to make a huge difference for you if you do.
 
 
I really hope this letter finds you. You need a change. A series of changes. They might seem difficult to imagine, but you’re going to pull it off. I know you will. I support you… no conditions. Now be well and start writing the next great chapter of your life.
 
 
 

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