Tag Archives: diabetes

Influences

I was reminded recently of how much we’re influenced by our experiences. Our surroundings, the things we encounter as we go through life have a profound impact on our lives. I don’t think it’s a stretch to say that.

Genetics play a role too, I suppose. But lately, I’ve been thinking about how I’ve learned, grown, been influenced, and influenced myself, the world I live in.

Small things have been a part of helping to make me the man I am. Big things too. In many ways, influences that seem small to me now may have, in fact, have had a lot to do in how I’ve come to where I am with my diabetes. Even my diagnosis.

I guess we’ll never know for sure about the diagnosis part. But when I’ve thought the past few weeks about how I’ve managed (or tried to manage) diabetes since early 1991, both well and poorly, I’ve been blown away by how much early and current experiences have been a part of that.

I grew up shy as can be, sometimes painfully shy. That led to some bullying, and being excluded from a lot of social situations growing up. By the time I was an adult, I was still a social infant in many ways.

In later years, that led to my insistence that I’ll never count on anyone for anything. Ever. So when I was diagnosed at age 28, I didn’t look for empathy, and I believed that it was up to me to live with diabetes or not live with it. I needed to rely on me, and no one else. I didn’t even want to go to the doctor to get my prescriptions filled, and where I could get away with it, I didn’t.

That helped me in a lot of ways, because I learned how to take care of myself from the very beginning. But in many ways, I also missed out… on innovations and changes in care and a hundred other things. I didn’t even hear of an insulin pump until maybe six months before I started wearing one, years after others had started. Until then, late 2009, I was still eating off of the old exchange diet and failing miserably.

Today, me and my diabetes are doing a little better. And I’m engaged with more people, inside and outside of the diabetes community, than ever before. I’m not only wearing a pump, I’m wearing a continuous glucose monitor full time. I’ve participated in clinical trials. I’m still working on improving my dietary choices, but I’m not doing too bad on that either.

I guess what I’m saying is that we all have things that make us what we are today. But we don’t have to let those influences rule us forever. I am faaaar from perfect. But I’m different than I was, hopefully in a good way.

My focus isn’t perfection. It’s being better. For me, for the people I influence, and for those who influence me.

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What I Had to Learn About Living with Diabetes

I may not look like it today, but I have to admit that I used to be obsessive about a lot of things in my life. I mean obsessive.

Whether it was something I was trying to master for work, or while I was competing in an athletic endeavor (something I still do occasionally), I was pretty intense in trying to perfect everything I did, and criticizing myself endlessly when things didn’t go my way.

Part of the reason for that is probably the fact that I’m at the tail end of the baby boomer generation, the group of kids who all grew up being told we could be the greatest at anything we tried, as long as we beat the other guy doing it.

But then, a funny thing happened. Diabetes happened.

Diabetes is not egalitarian. It doesn’t care how hard you work at it, and it certainly doesn’t care how much you care about being healthy. It’s ready to disappoint you when you least expect it… middle of the night, on your weekend away, right at the beginning of that big presentation at work.

Even when I obsess over everything having to do with my blood sugar, sometimes diabetes won’t cooperate anyway. I can be “compliant” as hell, but the numbers won’t always reflect it. And there’s nothing I can do about that.

That’s one of the biggest things I’ve learned about living with diabetes for almost 28 years. There are no absolutes. No guarantees. Nothing is certain, except that tomorrow, I’ll still be living with diabetes, and I will still be a slave to my numbers.

Diabetes has taught me not to trade in absolutes. It’s taught me that there are no perfect days. It’s taught me that if I work harder today, I’ll still have to work harder tomorrow. And the next day. There are no rest breaks.

It hasn’t been easy. My brain is hard-wired to find a solution and implement that solution whenever possible. But through age, experience, or a combination of the two, the synapses of my brain are being re-wired to look for solutions, work on those solutions, and sometimes be okay with a less than satisfactory result.

Of course, being a slave to my numbers means I have a better chance at diabetes success from day to day. At the same time, I’ve also learned that at any given moment, I may have to remind myself that I’m just doing the best I can.

And that’s good enough.

Diabetes Delay

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.

#LanguageMatters – #LanguageEvolves

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.

2018: Happy Exhaustion

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.

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