Category Archives: Milestones

26 Years: Let’s Go.

Well, it’s happened again. I’ve managed to check off another year of living with Type 1 Diabetes.
26
The official milestone occurred on January 30/31 (it’s a long story). I went to work, where things were crazy busy, but I managed to get through it. After work, I went home, had a modest dinner, and wrote a little. Kinda boring, right?

That’s the thing this year. It’s not that announcing that I’m still here after 26 years isn’t wonderful. But I think I may have moved over from the “how many years can I rack up living with diabetes?” phase to the “how much more of my life can I live with diabetes?” phase. So far, I’m a little over a year short of diabetes being with me for half of my life.

Go ahead… do the math… I’ll wait.

I guess it would be natural to wonder, since I’m almost in my mid-fifties, if I should be worried about whether I’ll be around much longer considering my chronic health status. But I don’t really think in those terms.

It’s a normal thing to consider, but I also try to remember that the time spent worrying about what might happen (and when it might happen) takes time away from the time I have left to make the rest of my life meaningful. And fun. And spectacular. Besides… who, other than a teenager, thinks of someone my age as near the end?

26 isn’t a big diaversary, and I didn’t do anything fantastic to celebrate. Not that doing so isn’t okay. To be honest, I’m happy as hell to have made this milestone. But I’m more interested in what year 27, and 37, and 47, and all the years in between have in store. I’m not afraid, and I’m ready for the experience. Let’s go.

Here’s to 2016.

I have to admit, it’s been quite a year.

Full of meetings and partings, full of new issues, and always full of interesting twists and turns, 2016 was eventful indeed.

I didn’t get a chance to participate in clinical trials this year, but I did get to do what feels like my first meaningful work for People With Diabetes by facilitating at the Diabetes UnConference, and representing DPAC at Friends for Life. There were fewer blog posts than in recent years, but I’m kinda seeing that from everyone these days.

We are up to 80 plus Champion Athletes With Diabetes medals awarded all time, thanks to some amazing athletes who shared their inspirational stories of perseverance this year.

There were some great podcast interviews, and though they are pretty infrequent, I’m still getting a kick out of interviewing my guests. Every conversation is different and very interesting. More interviews to come in 2017.

I haven’t done this for a couple of years, but I thought this would be a good opportunity to tell my year in photos. Check out the captions for specifics. Here goes:

2016 was the year I finally settled on a new insulin pump: the Animas Vibe.

2016 was the year I finally settled on a new insulin pump: the Animas Vibe.


Loved participating in Diabetes Podcast Week.  Can't wait until 2017's edition!

Loved participating in Diabetes Podcast Week. Can’t wait until 2017’s edition!


At the JDRF Type One Nation research summit in March, I finally met diabetes (and RA) blogger from Baltimore, Molly Schreiber.

At the JDRF Type One Nation research summit in March, I finally met diabetes (and RA) blogger from Baltimore, Molly Schreiber.


The Diabetes UnConference Las Vegas 2016 Alumni.  I facilitated for the first time.  A meaningful event made even more meaningful.

The Diabetes UnConference Las Vegas 2016 Alumni. I’m somewhere in the back. I facilitated for the first time. A meaningful event made even more meaningful.
(image courtesy of The Diabetes Collective, Inc.)


The Children With Diabetes organization came back to the D.C. area for Friends For Life in Falls Church, Virginia in April. Their website says they're coming back in 2017.

The Children With Diabetes organization came back to the D.C. area for Friends For Life in Falls Church, Virginia in April. Their website says they’re coming back in 2017.


April was a busy month that included the Medtronic Diabetes Advocates Forum in Los Angeles.  Great to spend time with more awesome advocates.

April was a busy month that included the Medtronic Diabetes Advocates Forum in Los Angeles. Great to spend time with more awesome advocates. I’m somewhere in the back.


Thank you Karen Graffeo for years of Diabetes Blog Weeks.  2016's week was superb, and I discovered more new blogs!

Thank you Karen Graffeo for years of Diabetes Blog Weeks. 2016’s week was superb, and I discovered more new blogs!


Coming back from knee surgery last year, I was able to run my neighborhood 5k in July.

Coming back from knee surgery last year, I was able to run my neighborhood 5k in July. I’ll be back next year, and I have definite plans for at least one bike ride.


I was proud to represent Diabetes Patient Advocacy Coalition at the big enchilada, the Friends for Life gathering in Orlando in July.  I was also extremely fortunate to spend time with great people, including Karen and Pete Graffeo, and one of my favorite writers, Cara Richardson.

I was proud to represent Diabetes Patient Advocacy Coalition at the big enchilada, the Friends for Life gathering in Orlando in July. I was also extremely fortunate to spend time with great people, including Karen and Pete Graffeo, and one of my favorite writers, Cara Richardson.


Encouraged by a few people I met in July at Friends for Life, I applied for and received my 25 year Journey medal from Lilly Diabetes.

Encouraged by a few people I met in July at Friends for Life, I applied for and received my 25 year Journey medal from Lilly Diabetes.


The Diabetes UnConference made its way to Atlantic City in September.  I'm wearing my Lilly 25 year medal on this day, sitting with the other facilitators in the front row.

The Diabetes UnConference made its way to Atlantic City in September. I’m wearing my Lilly 25 year medal on this day, sitting with the other facilitators in the front row.
(image courtesy of The Diabetes Collective, Inc.)


Cherise Shockley started with a goal of 12 hours of diabetes Twitter Chat on World Diabetes Day in November.  It turned into a full 24 hours of talking diabetes, with many moderators (including me), from around the world.I have been so fortunate to help moderate the Wednesday DSMA Twitter chat at least once per month this year.

Cherise Shockley started with a goal of 12 hours of diabetes Twitter Chat on World Diabetes Day in November. It turned into a full 24 hours of talking diabetes, with many moderators (including me), from around the world.
I have been so fortunate to help moderate the Wednesday DSMA Twitter chat at least once per month this year.


Insulin pricing has been an issue for a number of years, but it has gotten more notoriety lately, in part due to Senator Bernie Sanders' tweets.  There will likely be more discussion on this issue in the coming year.  See some of my recent blog posts to see my thoughts. (image courtesy of Twitter)

Insulin pricing has been an issue for a number of years, but it has gotten more notoriety lately, in part due to Senator Bernie Sanders’ tweets. There will likely be more discussion on this issue in the coming year. See some of my recent blog posts to see my thoughts.
(image courtesy of Twitter)

This isn’t everything either… I was able to attend an FDA workshop in August. There was the dustup over United Health Care’s decision to limit access by entering into agreement with Medtronic, making them the exclusive provider for insulin pumps through their insurance in the USA. And there’s FDA’s approval of the Medtronic 670g, the hybrid closed loop system that brings us closer to a truly artificial pancreas solution.

Those are just the things I’ve experienced this year. Of course, my diabetes is not your diabetes, so your year may have been different. However this year has gone for you, I hope that it has been filled with happiness and many new acquaintances. Even more so, I hope that 2017 brings you and I the best year yet. We deserve it! And please remember: I support you… no conditions.

Markers of our time.

Back in July, when I was at the Children With Diabetes Friends for Life event in Orlando, I had an opportunity to meet a few people working with Eli Lilly & Company in Indianapolis. Eli Lilly, as you probably know, is one of the largest producers of insulin in America. They also have this nice program that awards medals to People living With Diabetes for 10, 25, and even 50 years.

When one of the Lilly execs asked me how long I had been living with diabetes, I mentioned that I had hit the 25 year mark earlier in the year, which prompted the question “Did you send in for your medal?”. I had not by then, but I had thought about it. A few weeks after that gathering, I went to the Lilly website and applied for my 25 year Journey medal. And that’s where I get to the point, the personal point, of this story.
25yearmedal
On the one hand, it’s incredibly selfish to fill out an online form and say “Please recognize me!”. Even now, a couple of months after receiving my medal, it feels selfish. Living with Type 1 diabetes for 25 years does not make me special, and more importantly, it doesn’t make me any more special than anyone who has lived with diabetes for 24 years or 26 years, or any other number of years. Like my A1c result, it’s just a number. A benchmark.

On the other hand, I spent a lot of the past 25 years enduring crappy A1c results. Various doctors and family members, some with the best of intentions, made me feel like it was entirely my fault. Seventeen or eighteen years after diagnosis, I was being told to manage my diabetes exactly the same way I had been told to manage it in the months after diagnosis. I had heard of insulin pumps, mostly that it meant that my diabetes was way out of control. I had no freaking idea what a continuous glucose monitor was. No one bothered to tell me anything about them, and if they had, I probably would have resisted because I wouldn’t have understood their usefulness.

Things in those days were either good or bad; there was extremely little middle ground, and my fear was that the more people knew about my diabetes, the worse I would look. Once I began to look beyond just good and bad, once I started to examine the gray areas and really consider possibilities rather than punishment, my life and my life with diabetes began to change.

So I get it… I’m not special. But I have certainly earned this medal. And I’m not going to feel bad about that. Part of not feeling bad about that meant actually wearing my 25 year medal at the Diabetes UnConference in Atlantic City in September. You can’t see it, but I’m wearing it in our group photo from the event. Most people probably didn’t know I had it on, but I wanted to wear it while with a group of people living with diabetes.

These were people who completely understand the uphill climb that diabetes can be. How diabetes can take your best efforts and kick them to the curb. The emotions of highs and lows and middle-of-the-night set changes and visits to endocrinologists and ophthalmologists. The concerns about how today’s diabetes may affect our lives years down the road, and how much of it is not good or bad, but simply a game of chance.

I’ll probably pull this medal out from its case and put it on now and then. Because you know what? I really did earn this. Having a medal doesn’t make me special. But it’s a terrific marker of time, and a way to focus on the fact that I have survived for 25 years. And it’s more than okay to be happy about that.

A few thoughts on 25.

It was some time Wednesday night when I realized:

This weekend, I will pass the 25 year mark of living with Type 1 Diabetes.
25
Like many other diaversaries, this one has snuck up on me. I mean, I knew it was coming, and then I got busy with other things and forgot about it. Now I’m sitting here on Friday wondering what it all means.

I admit that though I was 28 years old at the time, I still don’t remember much about the day or days surrounding my diagnosis. Wait… that’s not true. I remember a lot.

At my first appointment with a new doctor, I went in for a complete physical, told him what I had been dealing with for several weeks (all the typical onset-of-diabetes symptoms), and he got a blood and urine sample. About two hours after I saw him, I received a call from the office asking me to come back first thing the next day. I did, and that was when I received the news that I would be living with Type 1 the rest of my life, and oh, by the way, I had a high level of ketones in my system, though I didn’t understand how serious that was at the time. I still expected to go to work later that day. One thing I’ll never forget is the look from my doctor after I asked him when he wanted me to go to the hospital. I thought he would say, “Let’s get you in next week, maybe Tuesday”. Instead, his eyes got big and he practically shouted “Now!”. The thought of it still makes me laugh.

After three days in the hospital I was sent on my merry way, and I started this long 25 year trek that puts me in the spot where I am now.

I was so different then. Different city, different job, different look, I still had some hair left on top, and a lot more energy. I knew practically no one else living with diabetes and never (I thought) came into contact with anyone else living with diabetes. What this does is skew your perspective. Having no other influences, I tended to trust everything I heard about diabetes, from family members, employers, and doctors too. By and large, they were way off the mark.

They were off the mark partly due to either incorrect or outdated information with regard to diabetes. But they were also off the mark because they didn’t know my diabetes. For my part, I didn’t know that my diabetes and how I managed it might differ from how someone else lived with this disease. I largely ignored my diabetes because everyone else did. I wasn’t in the emergency room or in danger of organ failure. And most of all, I wanted so desperately to live my life without it being pointed out that I also lived with diabetes.

As I grew older, I realized that regardless of what I wanted when I was 28, there was indeed no separating me from my diabetes. One of the critical things I discovered was that that’s okay. Diabetes sucks, but it’s a part of my life, and I won’t, I can’t, be ashamed of that. If I buy into that, it will kill me inside.

You may be wondering whether I’ll be filing paperwork to ask for a 25 year medal from Joslin or Eli Lilly. I’ve thought about it, but to be honest, it’s not a huge priority for me right now. If I get part of a day free where I can compile everything and send it in, okay. If not, meh.

It’s not like I feel I don’t deserve a medal. I do. I even think it would be kind of cool. But I’m also reminded of the people out there who were diagnosed a year ago, or five years ago, or forty years ago who have been living their own version of diabetes hell, all by themselves, ever since diagnosis. Those people deserve a medal too. What makes me more worthy?

What about the people who lived with diabetes for some time, whose lives were tragically cut short due to hypoglycemia or ketoacidosis or some other horrible, unjust happening? I cannot accept something as trivial as a medal without remembering those who were never rewarded, and yet paid the ultimate price.

Okay… positive spin… This weekend marks a milestone, but I want and expect to celebrate many more milestones in the future.

Shortly after diagnosis, I read that a man in the United States living with Type 1 had an average life expectancy of 59 1/2. I know that number should probably have skewed upward since then. But for me, 59 1/2 plus many more years has been a goal since diagnosis. At 28, that threshold seemed very far away. Today, it’s less than six years.

More goals, more milestones, and more celebrating them. Why the hell not? Enjoy your weekend. I’ll be looking back on the great and not-so-great things about my diabetes at 25. Feel free to list yours below.
 

The 10 most interesting diabetes people of 2015.

Since we’re nearing the end of the year, and with a nod to Barbara Walters’ list of the ten Most Interesting People of 2015, I thought it might be nice to narrow it down a bit and give you a list of the ten most interesting diabetes people of 2015.

Ha! You thought I was going to give you a list of names, right? I just can’t do that. Even if I tried, I know I would leave someone deserving out of the post. So I’m not going to go there.

Instead, I’d like to list ten people who really made a difference this year, but by category rather than by name. If you still think I left someone out, leave a comment and maybe I’ll have to do a part 2.

Anyway, in no particular order, here’s the list:

1. Clinical Trial Participants
You’ve heard me say it a thousand times. We don’t get the new technology, or the new drug, or the new anything without clinical trials. People who sign up to be a part of clinical trials are brave, at times patient, and absolutely necessary. If you meet someone who’s been part of a clinical trial, ask them about it. I know you’ll find it to be fascinating conversation, and you’ll appreciate them even more.

2. Social Media users
Because it’s become such a part of our lives now, it’s easy to forget the impact that social media has made with regard to diabetes and people living with diabetes. But make no mistake: there may be more voices, there may be more avenues for expression, but the results are the same. People feel less alone. People are welcomed. People are not judged (we hope). Social media has its drawbacks, but it continues to bring more people toward diabetes enlightenment every day. Doesn’t that make them healthier too?

3. Researchers
How about those researchers anyway? It takes an awful lot of dedication to conceive an idea and try to see it through the process of ups and downs, starts and stops that come with bringing any new idea to the forefront. From new insulins to water soluble glucagon to new treatments for retinopathy, researchers continue to bring their A game every day.

4. Technology Developers
Nightscout. Artificial pancreas. CGMs that won’t need finger sticks for calibration. Whether it’s something just rolled out or something we’ve been waiting for for a long time, diabetes technology is still, in many ways, the undiscovered country. Creating new devices, mapping algorithms and figuring out how to keep it all working safely and securely is hard work. And to me, it’s wicked cool too.

5. Diabetes Advocates
There are people… dedicated people, all over the world who are speaking on our behalf in front of governments. Lobbying for research dollars. Dispelling diabetes myths in the checkout line. For everything that they do, and you do, big and small, you have earned my gratitude and admiration. Forever.

6. Long-Timers
Thirty years. Forty years. Fifty years and more. There are more of us living longer and longer with diabetes, and that is encouraging beyond belief. From someone who is nearing 25 years with Type 1, to all of you living longer than that after diagnosis: Thanks for showing me how it’s done.

7. Diabetes Writers
Telling a story is still so important when it comes to empowering that “Me too!” feeling we’re all so fond of. Hey diabetes writers: I still love reading your blogs, your books, and your Facebook posts. Keep it going for the next person who is looking for a connection.

8. Diabetes Podcasters
How about all of those new diabetes podcasts? How about all of those old diabetes podcasts? Whether you’re an adventure sports enthusiast, a parent of a Child With Diabetes, or someone looking for information from the Centers for Disease Control or the American Diabetes Association, you now have more podcast options than ever to choose from. A recent iTunes search on “diabetes” yielded around 80 podcasts that partly feature or totally feature diabetes. More information, and more ways to get that information, is always good.

9. Our Healthcare Team
We all know about situations where a doctor’s behavior or actions did not work with what a patient needs. But when the doctor(or nurse, or physician’s assistant, or CDE)-patient relationship does work, it yields tremendous results for both the treated and the treatee. So, those of us with terrific doctors: let’s thank them for being an integral part of helping us manage our lives with diabetes.

10. YOU!
Let’s recognize that it’s been a long year. However we’ve lived it, we’ve survived. And the best part is, we’ll have a whole new story to tell next year. Because things don’t always stay the same. That’s true if we’ve had a super year or a terrible year. Our future stories remain unwritten. I’m kind of excited about that. How about you?
 
 
That’s my list… Who were the most influential and interesting diabetes people of your life this year?
 

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