Monthly Archives: April 2017

“I don’t know what I would have done without you guys”

I agreed to do something on Saturday. I set off at around 9:00 a.m. and slogged my way across town in the cold mist, which later turned into a cold April rain. I went to help a friend clear the basement in her parent’s home.

This is not what I wanted to be doing Saturday. It was not where I wanted to be.

For decades, my friend’s parents have spent part of their year in Baltimore, and part of their year in Cairo. Her father’s Egyptian, her mother American. A little over a month ago, after a long illness, her father passed away in his home city. Her mother is still there, tying up loose ends until she is able to return to the States.

My friend has two sisters, but they don’t live here anymore, and that left my friend as the one left to try and make sense of decades of paper, old electronics, window shades, and other nic-nacs on shelves. And shelves. There was a lot of stuff in that basement. A lot to deal with.

There was a 30 foot long dumpster in the driveway, and in a little over 2 1/2 hours, we filled it. But it wasn’t easy. There was a lot of stuff do deal with. A lot of decisions had to be made.

The easy part was deciding what to throw out. But… it was decided that some of what we found should be donated. Some of the items we found actually had some value, and were kept. There were things that needed to be decided on by her mother later. They would stay in the basement.

I had my own issues during all this. In addition to helping with a difficult task, I had to take care of my own diabetes, making sure to fuel up at times to avoid being useless due to a low blood glucose level.

As we worked through the mass of material before us, from time to time, I could see that the process of it all was affecting my friend in a profound way. It wasn’t just stuff to her… it was decades of memories. Occasionally, she would retreat and her boyfriend needed to take over the duties of deciding what stayed and what went.

This process frustrated some of her friends who were there to help. They had trouble understanding why it took so much time to decide on a strategy, on what to do with something they found. Why couldn’t we just clear the basement? Why weren’t we doing this faster?

But it needed to happen this way. If it didn’t, we risked frustrating my friend, causing her to pull back entirely, sending us away and forcing us to try on another day. This what not what she wanted to be doing Saturday either. It was not where she wanted to be.

So carefully, deliberately, we started to chip away at the pile of things before us. Children’s toys. Scrap books. Old televisions. Boxes and boxes of books. A lifetime of memories. There’s no guide book or training manual on how to deal with this.

When it was over, my friend and her boyfriend were extremely grateful. I heard things like “I owe you big time”, and “You guys are rock stars”. Those sentiments were as sincere as any I have experienced.

Sifting through decades of memories, finding what you can work with and what you can’t, and emerging on the other side of it all with a feeling that you’re making real progress, is a lot more complex than just throwing a bunch of shit in a dumpster.

In the end, I know I was where I needed to be on Saturday. The real breakthrough was not in how I helped, but in what I learned.

As I stood on the edge of a nearly overflowing dumpster, I tried to encourage my friend, telling her that this was a sign of real progress. She said, “Have you looked in the garage yet?”.

There’s likely another Saturday there in my future. Progress has been made, and much more needs to be accomplished. But my friend understood that your friends mean so much more when they’re there for you to help with the difficult tasks. As her friend, it’s so worth it to hear “I don’t know what I would have done without you guys”.

Sharing Diabetes in the Workspace

Every so often these days, I see someone post a question, either on Facebook or on Twitter, that goes something like this:

Has anyone had any experience sharing your diabetes with people at work? Do I have an obligation to tell my boss? My co-workers?

That’s a lot to ask all at one time. If you’re asking all of that at one time, you’re probably feeling a little stress over the implications of sharing your personal diabetes information with someone else. And that’s a perfect place to start.

This holds particularly true in the United States, but also in other countries: Before you share anything, know that legally, you are under no obligation whatsoever to share any of your personal medical information. With anyone. So the first question you really need to answer is: Do you feel comfortable giving up your legally protected right to medical privacy?

If the answer to that question is yes, and often it is, remember also that sharing that you’re living with diabetes does not mean you’re suddenly required to share everything about living with diabetes. It’s not all or nothing. You still control the flow of information. You can tell as much or as little as you see fit. Just remember you can’t un-tell it. Like adding spices to a recipe, you can always add more as you go, but you can’t take any away.

Those last two paragraphs are really important in my mind. Most employers aren’t likely to make your work life difficult due to your unfortunate diagnosis. That would be illegal. But there are a lot of gray areas too. Imagine telling your employer about your diabetes one week, and the next week, suffering a difficult episode of hypoglycemia. Now, your boss comes to you and says, “How can we keep this from happening in the future?”.

This has happened to me. And it was uncomfortable. And initially, I handled it poorly. Instead of blaming the diabetes, I blamed myself for the hypo, and that set the idea in my employer’s mind that I alone was responsible for making sure there were no more hypos at work. Ever. That’s about as likely as saying it’s never going to rain again.

It also set the idea in my employer’s mind that they could ask me about my diabetes, my personal issues with diabetes management, and pass judgement on them, whenever they wanted. It took a number of years to break them of this habit. If I had been open about the diabetes, and not so open about my management of my diabetes or how I felt about it, we both could have avoided some uncomfortable conversations.

Now, co-workers… Co-workers are a different thing. Co-workers can run the gamut from being incredibly kind, to feeling jealousy over something they don’t understand that they might view as “special treatment”, to giving unconditional support, to viewing your diabetes as a weakness.

I can’t pick your co-workers for you. I wish I could. I’ve been working since I was 14 years old (lived with diabetes since I was 28), so I’ve probably experienced all of these people, often without even realizing how they felt. I can’t change how people will react to my diabetes.

What I suggest to people, which I’ve mentioned at times, is to find someone at work who will understand. One of those supportive people. Find that one person you can count on. That’s who will be able to help get you juice when you need it, or will carry a meeting or a conference call for a few minutes while your glucose and your brain function returns to a reasonable level.

Then, be sure to thank them. Leave a thank you card on their desk. Take them out to lunch. Let them know how much you appreciate what they’ve done for you, and make sure they know they can count on you when they need you too.

In the final analysis, there isn’t one simple answer on whether you share, or how much you share, about your diabetes at work.

I will tell you this, however: If you do share, remember that it’s a relationship. Treat it like a relationship. Everything won’t be perfect at first. That doesn’t mean the efforts to nurture and improve the relationship between you, your diabetes, and your job aren’t worth it.

Sharing your diabetes is not likely to be an overnight success. If you do decide to share, expect that making it a success will require patience. Whether you share or not, the decision is up to you. And whatever you decide, and whenever you decide it, is okay.

Off to college with CDN!

One of the most impressive developments in the diabetes community in the last several years has been creation of the College Diabetes Network. As of this writing, CDN has established chapters that support students living with diabetes at 112 colleges and universities.

Their website is a treasure trove of information, on everything from preparing for college, to life on campus, to relationships, to student’s rights, and more. If I’m living with diabetes in the USA, and I’m going to college soon, I want to become a CDN member.

And if you are that person, or one of your kids is a young adult who will be transitioning to college campus life soon, there are a couple of really great resources available right now.

College Diabetes Network has produced booklets for students and parents that are designed to help them through the changeover from high school to university. These booklets are great for wrapping your head around everything you need to consider ahead of time. If you’re like me, there are probably a few items in there that you haven’t thought of yet.

But that’s no problem… because you can get your hands on the student guide or the parent’s guide (or both), absolutely free. Put together in part through a grant from Eli Lilly & Company (thank you insulin maker!), you’re going to want to have these in your hands, whether you’re headed to a campus with a CDN chapter or not.

CLICK HERE to go to the CDN website, where you’ll get a preview of the guides and a chance to request one of your own.

So to review: free guide full of useful information to help you begin life at college while living with diabetes. Sounds like a winner to me. To get all of the information, and to find out more about College Diabetes Network, CLICK HERE. Good luck!

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.

Sign up for these public meetings.

Hello…. I hope everyone’s week has been grand. For me, life has been a series of meetings and appointments and lots of work. While I have a moment, I want to let you know about two upcoming meetings that offer both educational and advocacy opportunities.

On April 26 and 27, there will be a meeting at the offices of the National Institutes of Health in Rockville, Maryland. The National Institute of Diabetes and Digestive Kidney Diseases (NIDDK) is chairing an interagency coordinating committee meeting where, in this case, they will be talking about prioritizing Type 1 diabetes research.

Like so many meetings, this one is open to the public. There will not be an opportunity to make public comments in person, but there is a way to e-mail your concerns ahead of time. Then, if you are able, you can go to the meeting and be the eyes and ears of the community, so to speak. We need that sort of thing in these forums.

To find out more, and to register, CLICK HERE.

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On May 12, there will be another public workshop at the U.S. Food and Drug Administration. This one is specifically advocacy-based. In this workshop, attendees will get direct input from FDA staff on the roadmap for approval of new drug therapies. You’ll get tips on how to make your voice heard in the approval process. And you’ll get additional information on how FDA uses the patient voice to help make informed decisions, while protecting patient safety.

This is a great opportunity to learn how the sausage is made. Metaphors! I’m full of metaphors today!

The workshop takes place at the FDA’s sprawling White Oak campus in Silver Spring, Maryland on Friday, May 12. To find out more, and to register, CLICK HERE.
 
 
That’s what’s happening near where I am… what’s going on in your part of the world?

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