Monthly Archives: December 2018

2018: Happy Exhaustion

December 27, 2018 – 12:11 pm

Can you believe we’ve almost made it through 18 years of this century already?

The latest trip of our planet around the sun has been one where I was actively involved in something (and often, more than one something) throughout the year. At times I felt tired, accomplished, tired again, and honored.

One thing is for sure: I’m not finished yet. There is more to do, and while I’m looking forward to working on many of the same projects, I’m also looking forward to changing things up now and then.

For now though, it’s time to reminisce, and consider the year as a whole:

That included previewing the Freestyle Libre, which I found to be reliable and easy to use. I’ll stick with my Dexcom for the alerts, but the Libre gives all of us more choice, and that’s good.

The news wasn’t all good this year. I was among the many who grieved over the loss of our friend Judy Reich. It’s still so hard to believe she’s gone, and I’m proud of the Diabetes UnConference alumni who made the trip back to Las Vegas for her memorial service.

Speaking of Las Vegas, I found the HIMSS (Health Information and Management Systems Society) annual conference to be huge, crowded at times, primarily focused (as you might expect) on business rather than patient outcomes, and exhilarating all at the same time. The information gathering was like drinking from a fire hose sometimes, but I loved it.

Less than two months later I was traveling to Chicago for the first time in 30 years, to attend HealtheVoices18. Seeing old and new friends living with diabetes and 40 other chronic conditions did a lot to recharge my batteries and help me to be inspired all over again. Also, I was honored to be asked to take part in something later in the year. I’ll get to that in a minute.

In June, I took a day off from work to go to Bethesda, Maryland to do a little video shoot. The backstory is, I didn’t think it went too well, I didn’t look my best that day, and I was sure everything I recorded was going to be left out of the compilation that was being put together. But I was wrong… at AADE in Baltimore in August, the #LanguageMatters video debuted before about 3,000 diabetes educators. I couldn’t have been prouder of my diabetes friends who were a part of this video, and I’m so grateful to Deborah DeMore Greenwood and Mytonomy for giving me the chance to participate too.

Also that weekend, I shared an incredibly poignant moment with someone who helped me many years ago. In fact, my best moment at AADE didn’t happen at AADE at all.

I can’t believe it’s already been almost three months since the DPAC Policy Training Meeting in Washington, D.C. I learned a lot over that weekend, and I was so happy to be allowed to use my voice to bring important diabetes issues before congressional staffers. Keep your eyes open folks… there should be more of this kind of activity in 2019.

Now, back to that Chicago trip in April. I was pulled aside by one of the attendees, who is one of my best diabetes friends, and asked to help with trying to pull off a Diabetes UnConference alumni weekend gathering in the fall. Without an UnConference in 2018, many of us were missing our tribe.

I don’t know if I personally pulled anything off, but I helped with what I could, and there was a Diabetes UnConference alumni gathering, coordinated by UnConference alumni, in New Orleans in early October. To everyone there, I must have looked like a tired mess (because I was), but it was incredibly satisfying to spend time with 20 other friends who are quite different except for the failed pancreases we all own.

One of the things I enjoy very much is speaking to people about diabetes, and why patient communities online and off are accomplishing great things. I got a chance to do that a few weeks ago in front of a Jewish women’s group locally. As usual, I started off worried I wouldn’t have enough content to fill my time, but wound up going over time anyway. Time well spent, for sure.

Through the year as all this was going on, I managed to write about 95 blog posts, put together fewer podcast episodes than I would have liked, moderated many #DSMA Twitter chats, attended another Friends for Life Falls Church event, and continued working for the citizens of my state on Maryland’s Advisory Council on Health and Wellness. Oh, and I continue to serve on the Reader Panel at Diabetes Forecast magazine (published by the American Diabetes Association).

Next year… well, let’s worry about next year next year, shall we? For now, I’m happy to look back on a year when I was very busy, but very happy to be exhausted at the end of it all.

I hope your 2018 has gone as well as possible, and I wish you all the best in 2019. Thank you for being a part of my life. I support you… no conditions.

By StephenS | Posted in Milestones | Tagged , | Comments (2)

Uncertain, but Hopeful. Vulnerable, but Resilient.

December 20, 2018 – 11:11 am

Make no mistake… there are reasons to be frightful as we near the end of the year. When it comes to diabetes, there is more than one reason to be mad, outraged.

I saw some of that in our #DSMA chat last night.

We talked about what 2018 has been like, what headlines grabbed our attention, and we made some predictions for 2019. Not everyone’s answers reflected hope and inspiration. In fact, nearly everyone, at one time or another, expressed disappointment, anger, or sadness.

But there was a lot of inspiration too. New jobs, excitement over meeting new diabetes friends at conferences, school successes, and a lot more. Seeing this helped reinforce something I’ve known, but have forgotten at times this year.

People With Diabetes are strong. We have more fortitude than even we ourselves could have imagined at diagnosis. We’ve overcome diagnosis, DKA, insurance denials, co-pays, hypoglycemia, stigma, discrimination, and a hundred other things that would try the soul of most healthy individuals.

We continue to pursue our goals, undaunted by doubters and uncooperative pancreases. We give our time and our money as if we had extra to give (truth: we don’t). We champion the causes we’re most connected to, and we champion the individuals that truly don’t have any extra time or money to give right now.

We educate, on a formal and informal basis. We learn constantly, formally and informally, because the nature of our condition and its care is constantly changing. We’re resilient, because what other choice do we have?

I might have forgotten some or all of that amidst all the craziness that 2018 has dished out. But Wednesday night reminded me that even though we’re vulnerable because of a failed organ, we’re certainly not finished yet. We’re still capable of great things.

And 2019 promises even more. Many of our participants in the chat talked about going beyond talk and plans, and moving toward real, concrete action on things like increased access to affordable insulin here in the USA. And more developments in closed loop technology. And more availability of real, meaningful support of those newly diagnosed.

I was also encouraged by how much everyone in our diabetes community is encouraged by others in our diabetes community. How much those human interactions, either online or in person, mean for our health and well-being. That benefit cannot be overstated.

Personally, I plan to continue some of the crusades started in this year and previous years. But I also plan to change a few things, just because I don’t want everything to be the same all the time. And I want to find more time to help and laugh with those in this community who mean the most to me.

Sure, we still have challenges. Diabetes itself challenges us every day. But we have hope. And a brain. And a heart. And courage. And empathy, which is what the last member of the group in The Wizard of Oz received before their part was edited out of the movie.

Okay, I was kidding about that last part, except the empathy. Empathy is important. And so are you. There is a lot for us to still worry about… we all know that. But we have each other. Let’s use our amplified voices for all the good we can, for us and for the ones who need us the most.

By StephenS | Posted in Social Media | Tagged , , | Comments (1)

Random Thoughts.

December 18, 2018 – 10:48 am

Lately, I’ve been living this kind of existence where really, I’m just trying to maintain some sense of happiness in what should be a happy season. Because this year has been hard, full of appointments and meetings and tasks and oh, by the way, all the crap that just keeps coming out of Washington these days.

So even though there’s been some diabetes, I’ve chosen to make diabetes less of a priority this December. That said, here are a few random thoughts, diabetes included:
 
 
I had my quarterly appointment with my endocrinologist last week, and since I’m going to have to decide at some point, we discussed pump options. I told her that because I already have the most important pieces, the most appealing thing for me to do for a while is open APS.

That did not go well. Not because she doesn’t think I could handle it. Rather, because she thinks I’d be too obsessed with it… that I would find it hard to leave alone, and it would rule my life. I found her reticence surprising, but her reasoning sound. For now, Open APS is not an option. In fact, she wouldn’t even write a script so I could get reservoirs and infusion sets to use my old Medtronic pump as a backup. I think she really wants me to make a pump decision.

In other news, I’ve been trying out a new timelapse photography app on my phone. Kind of fun to see everything moving in fast motion. I’m trying to find interesting ways to use it.

I’ve been cooking a lot this December. I really do love to cook, though I wouldn’t want to do it for a living. But there’s been a lot of comfort food.

I’m working on configuration of open enrollment on the human resources software at my company for the 22nd year in a row. Basically, I make it so people can make their benefit elections online according to their eligibility, including a somewhat complex rate structure for multiple health plans. Every single time I do this, I realize how lucky I am to have access to a pretty good health plan through my employer. If you don’t live in the USA, you probably don’t understand what I’m talking about, and I hope you never have to.

I’m currently dealing with another medical issue. I don’t know what it is yet, but I hope I find out soon. That’s all I will say about it right now. Just wanted to get it off of my chest.

The Great Spousal Unit and I went to the movie theater last week to see a special showing of the 1954 holiday classic, White Christmas. As we were walking out, I remarked that we saw only two movies in theaters all year: Black Panther (on its opening weekend), and White Christmas.

Our Holiday Open House was a big success again this year. We counted 49 attendees, new and returning. Including a neighbor and a kid from the city he’s mentoring, who we contracted for leaf cleanup in our yard. They happened to arrive just as the party was starting.

When they finished, I went out and told them they couldn’t leave without coming in and hanging out with everyone else for a while. They stayed for a couple of hours, watched the football game in the back room, met just about everyone I know, and left with agreements to clean up leaves in four more yards. One of the best stories of the season, for me and for them.
 
 
Finally, I hope you will allow me to wish you the happiest of holiday seasons. Please know that even though it can seem like it at times, you are not alone, and there are resources out there to help you if you’re feeling down. If you have trouble finding them, send me an e-mail and I will try to help you locate them.

From me to you, All The Best this holiday season.

By StephenS | Posted in Random Glucose | Tagged , , | Comments (0)

Communities exist everywhere. Including right here at home.

December 6, 2018 – 10:11 am

I do a lot of speaking these days, formally and (mostly)informally, about our wonderful diabetes community. I talk about the support, the empowerment, the innovation, and the kindness I’ve experienced and that others encounter after getting that horrible diagnosis.

I got a chance to talk about that before another great community this week. Hadassah of Greater Baltimore is part of a larger Jewish women’s organization that, among other things, promotes the health and well-being of women. Hadassah, and Hadassah of Greater Baltimore, is a huge community of women who work tirelessly in supoort of their common causes. Sound familiar?

So it was interesting to me to see these two communities… Diabetes and Hadassah, coming together for an hour of understanding and information sharing.

I got a chance to educate the group about diabetes, of course. And as you might expect, there were a few people in the group who already have diabetes as a part of their lives. It was interesting to have them ask questions or point out some piece of technology they’re using, right before I got to the part where I discussed exactly those things.

It was also interesting to experience their genuine interest. There was a lot of discussion back and forth, many questions, and a fair amount of discussion after my talk.

This all took place about five minutes from my home. So, you might say, I attended an event in my home community, where I introduced people to my diabetes community, and I was introduced to a whole new community.

Me and my friend Linda, who introduced me to Hadassah of Greater Baltimore


In the final analysis, it went very well. When you’re passionate about your subject matter, you don’t really worry too much about how you’ll do. You just try to remember to shut up once in a while so people can speak and ask questions.

What I left the group with is what I’d like to leave you with right here. There are communities everywhere, uniting around issues important to them, and delivering a positive impact to the people they serve. Find your community, and help make a difference.

By StephenS | Posted in Events | Tagged , , | Comments (3)