Monthly Archives: January 2019

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.

Advertisements

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.

%d bloggers like this: