Tag Archives: diabetes

Diabetes Delay

January 10, 2019 – 10:11 am

Here’s something you probably know, or maybe you should remember if you forgot. Because we see, we read about people all the time who seem to be better at handling their diabetes than we are. They’re in magazines, with big glossy photos, and stories recounting all of the fabulous things they’ve accomplished while living with this condition.

But there’s something not written in there. It’s something that you and I and those “Diabetes Superstars of 2019” have in common, in addition to our failed pancreases.

Trust me when I say this: absolutely no one is living a perfect life with diabetes.

We all have a weakness. Whether it’s the late night carbs we squirrel away when no one’s looking, or it’s burnout that shows up when we least expect it, or it’s an A1c we’re uncomfortable with, everyone has something they would not like to show the public.

I’m no exception. My weaknesses include extra carbs when traveling, probably due to stress and a fear of going low at night. I don’t experience depression, but I have my moments of melancholy now and then. And there’s one other thing.

I have to be the lousiest refiller of prescriptions and supplies in the history of the planet.

I sit here this morning, looking at the cabinets where I store my pump infusion sets, reservoirs, and CGM sensors, and I realize that the sensors are the only thing I have enough of right now. The infusion sets and reservoirs will run out within two weeks if I don’t refill them. And I feel stupid.

I feel stupid because Medtronic will stop supplying the infusion sets and reservoirs for my Animas Vibe pump in September. That means, when the supplies run out after that, I need a new pump, or I need to stop pumping altogether.

I’ve been good at stretching supplies… wearing infusion sets a day or two longer, reusing reservoirs, all with the idea that I could build up a good supply and go a few more months, maybe into 2020, before having to start on a new pump.

Now, with my current supplies running out, I have to start over, and if I’m lucky, I’ll get an extra few weeks beyond September before switching. I’d be lying if I said I wasn’t mad at myself right now.

Now, I could get mad at Medtronic, because they don’t have to stop supplying me in September. But even if Animas still had a presence in the market, they would eventually stop supplying my pump, so the onus is really on me with this one.

So what can I do? I can be mad at myself, but I also must go forward, recognize that I have to get my supplies refilled, and do that. Today. Maybe I can set a reminder to refill my supplies every three months, though I suspect my delay with this part of my diabetes is really just that I hate to go through the motions of ordering supplies on a regular basis.

There you have it. I’m not perfect. I’m never going to be in a magazine either, but you get my drift, right? Don’t ever look at someone and think they have every part of their diabetes figured out. We all have something we wish we were doing better. But we also have resilience, and that keeps us doing what we need to do, even if sometimes, we don’t want to do it.

Note: I did order reservoirs and infusion sets today… maybe I needed to get this out of my head and just do it.

By StephenS | Posted in Pumps | Also tagged | Comments (3)

#LanguageMatters – #LanguageEvolves

January 8, 2019 – 10:11 am

I’ve been following a conversation on Twitter for the last few days. Mostly, I’ve been following it because I was tagged in the original post, along with a few others from the Diabetes Online Community. The original post covered a familiar theme, and it went something like this:
 
 
Do you prefer to be called a “Person With Diabetes” or “Diabetic”?
 
 
There were a ton of responses, and there still are, even today. But not from me.

Yes, I prefer the term Person with Diabetes. If you prefer something else, okay with me. If you want to talk with me about that one-on-one for a while, that’s fine too.

But I am so over discussing the PWD versus diabetic thing. I also can’t believe I just said I am so over something.

Some version of this same question comes up on my Twitter and Facebook feeds at least once per month, sometimes more. It’s been asked and answered and gone through so many times that further discussion on the topic just seems like white noise to me.

Can we all agree that the preference on this subject lies with the actual person with diabetes? And that the health care professional, co-worker, or family member should respect that person’s preference? Good… now, let’s move on.

Can we all agree that #LanguageMatters, but also that #LanguageEvolves? Or at least that it should, anyway?

What’s the next big thing to discuss? What’s really important to you right now? What kind of language should we be using to help each other? Who remains to be educated about patient-focused language in health care?

If you’re newly diagnosed, and a chronic condition isn’t something you’ve had to get a grip on yet, I get it. In that case, it’s okay to ask about preferences, and about why the words we all use can make such a difference.

For me, however, the discussion of language has moved far beyond that. I can see that language in diabetes, and in health care in general, will continue to have a big impact on our lives. It must. Let’s move the discussion forward, because there is so much more to define. There are so many more to educate.

Now that we all agree that #LanguageMatters— let’s start to discuss how to evolve our conversations to cover more than just the descriptions of ourselves.

By StephenS | Posted in language | Also tagged , , | Comments (3)

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 | Also 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 | Also 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 | Also tagged , | Comments (0)