Category Archives: Milestones

5 Years. What now?

Over the weekend, I woke up and realized two things. Number one: I’m another year older. Number two: This blog is officially five years old.

This gives me pause, because of something I’ve been keeping (mostly) to myself all this time.

When I started writing here, I decided that I would just keep it going as long as I wanted to write. After all, this has always been part advocacy/part diabetes news/part personal diabetes journal. Then, when things got rolling a bit and it looked like it might be around for a while, I set an internal goal to keep going until I hit five years or 1,000 blog posts.

For the record, I’m at a little over 700 blog and podcast posts to this point. But I have definitely hit the five year mark. I’ve always known this couldn’t last forever. What do I do?

Now I’m at least forced to think about this thing… the end of this thing. After all, you can cover a lot in five years. The Dick Van Dyke Show lasted five seasons, and they had a pretty good run.

So have I, for that matter. I’ve told more stories and seen and covered more developments in diabetes, good and bad, than I would have ever guessed I would five years ago. I’ve tried to be as supportive as I can, while maintaining a fair amount of skepticism regarding the motives of researchers and industry executives. I’ve tried to retain my outrage for things that really matter. As you can imagine, the last five months or so have made that a challenging task.

Is this blog still relevant? Was it ever relevant? These are questions I’m asking myself.

I think I started this blog right at a time when many people flexed from just reading blogs to writing them too. Many diabetes blogs sprung up in the same year that mine did. Some are still around; some are not. Out of everyone who started a diabetes podcast three years ago, I think I was the last. Blogging is still relevant, definitely. And really, I just love podcasting. As for my blog and the podcast… well, I’m relevant to me. How’s that for self serving? I really hope I’ve been relevant to others as well.

When there’s a big development in the diabetes community, I’m rarely the first one to post something about it. Hey, I have a full time day job, you know? Bills are relevant too. When I’m not the first to tell a story, I try to really consider the subject at hand and write carefully, choosing to inform, agitate when necessary, and sometimes twist your head around to focus on something you might not have considered before.

I’ve been lucky enough to be in industry sponsored meetings, at symposia, and at FDA. I’ve attended many conferences and UnConferences, and written about them all. Not all of these events were specifically diabetes-related. It was a privilege to cover all of them. I’ve also been around just long enough now to see new faces in these gatherings, and I have to say that it’s very gratifying to know that there are many passionate advocates out there, learning, and possibly surpassing, anything I’ve ever done. I never worry about what I cannot get to. It’s both a sad and wonderful thing that there are far less spaces for advocates at these things than there are advocates to fill those spaces.

Speaking of advocacy, there has been a lot of it over these last five years. Participation in community initiatives like Strip Safely, and volunteering for Diabetes Patient Advocacy Coalition. Speaking at an FDA workshop on the importance of improving the landscape on interoperative devices. Speaking April 1st at the March for Health in Washington. Still, I wonder if I’m really a good advocate, or if I’m not as great as I’m making it sound. Despite how wimpy that last sentence sounds, I think it’s good that I question myself on this from time to time.

Photo courtesy of Bennet Dunlap


There are things I’ve written about that I haven’t posted. If you see me in person, ask me about a New York Times reporter referring to diabetes devices like insulin pumps as gadgets in a front page story. My answer might surprise you. Or ask about the amazing health initiative in Las Vegas that I visited back in 2015. I was so impressed, but haven’t been able to publish that one yet.

And boy, have I had some awful blog posts. A review of sugar free Peeps? I hate marshmallow, which is why I had family and friends taste test them. That’s something that should have never been published.

On the other hand, there have been wonderful moments, like when I wrote a sort of love letter to the Diabetes Online Community. That is still the most viewed thing I’ve ever published. And OMG, we’ve given away over 80 Champion Athletes With Diabetes medals. Do you want to feel good? Reward someone for their hard work.

And there have been some personal posts here too, usually from vacation, and the occasional recipe. I’m trying to perfect a couple of new recipes, and if they turn out well, you can bet I’ll share them here. Life can’t be all basals and boluses, right?

So yes, in the end, I’m going to keep writing. I know I have more to say, more to cover. No more goals, though if I reach 1,000 blog posts I’ll likely go through this exercise again. At the rate I’m going, I have over two years to go to get there.

Also, and this is important: I know it sounds hokey, but I can’t wrap this up without thanking all of the wonderful people who have commented, given me encouragement, informed me about what I got right and what I got wrong, and made me feel like this whole exercise has been more than worth it. Thanks to the people who felt that telling their story to me was worth it to them. Thank you to our Champion Athletes With Diabetes medal winners who inspire me always.

Our lives, and our lives with diabetes, are not all the same. I’m a true believer in the notion that our diversity makes us stronger. Thank you for looking in on my life with diabetes for five years. I hope to continue to be worthy of your attention for the foreseeable future.

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.
 

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