There’s always been a kind of up and down about my diabetes. Not just when it comes to blood glucose levels, but with everything. Work has been one of those things. Sorry that this is so long. Hope you’re still there at the end.
When I was first diagnosed, all the way through my first 15 years or so with diabetes, I didn’t really experience any clashes between my diabetes and my jobs. Later on, I had a few uncomfortable moments here and there, and for the last few years everything has been absolutely great. There are certainly reasons for all of this, and the reasons are probably not everything you would think of right away.
I should also mention that my A1cs were coming in pretty high during these years, when I was actually seeing doctors. I rarely tested my BGs. And I was on MDI (multiple daily injections); I didn’t start pumping until much later. So as long as I wasn’t running to the restroom every five seconds, there weren’t many outward signs of my diabetes at all.
Then I started the job I have today. That was around 16½ years ago. My A1cs were still in the 9s, but shortly after I started seeing a new endocrinologist who started me on Lantus. Now, my knowledge of diabetes was still practically nothing at this point, so I injected as prescribed, which was once per day. That’s it. The lantus did its thing, which was okay for a while. But my A1cs were still in the 8-9 range. And then, the lows started coming. Terrible lows. Lows that gave a new definition to hypoglycemia for me. Including a couple of bad ones at work.
After a couple of those events, I had to deal with internal conversations with my bosses. I have a hard time describing this, and after all this time I’m still not sure I can do a good job of it. I was called in, behind closed doors in one instance, and was asked “What are we going to do to make sure this doesn’t happen again?”. How do you answer that? Especially when your knowledge of your own diabetes is practically zero, but you think it’s not. Another conversation included a directive that because these lows seemed to be happening just prior to my normal lunchtime (not true, but they weren’t always aware of the other times), I was going to be required to go to lunch 45 minutes earlier than I had normally been going to lunch. Great… Let’s take the lunchtime issue out of the equation and add 45 minutes to the time I eat between lunch and dinner; I might go low right after work, but no one there will know about it because I won’t be there. Problem out of sight, out of mind. This was something no one else in my organization was required to do, and I was pretty unhappy about it, but what could I do? I had a really good job and people who depended on me. Plus, I was working with (and for) people who otherwise were very good, very nice people. I felt like I was running out of options, but didn’t know where to turn.
I muddled through a little longer. Okay, a few more years longer, before things began to change, and I think my co-workers started to see diabetes in a different way. Part of that involved a hypoglycemic event involving a co-worker who, until then, I was unaware had been living with diabetes. My boss came to me asking how I could help this person at that moment, while they were still trying to come out of it. I’m pretty sure they shouldn’t have shared the diabetes thing with me, but since they did, I shared what I felt during those times. I just started talking.
I told her about how hypoglycemia is a near-death experience, and how you can get this violent mental and physical swing between just wanting to survive, then feeling horrified that you’ve been such a bother to people who up to that point don’t know your diabetes and can’t hope to understand it on such a level, then wanting to prove how strong you are by going right back to work and performing like a superstar, all while feeling so physically weak that you just want to curl up in the corner and sleep for the rest of the day. This was the reward for coming back from the brink of extinction. And, oh, by the way, it might happen again tomorrow. You never know for sure.
I think that helped changed the perspective of how people at work viewed hypoglycemia, at least. My outward attitude started to change too. I started caring more about my personal survival and less about whether someone thought diabetes was a mark of personal weakness, or weirdness, for that matter.
Five years ago, I began to see a new endocrinologist, who for the first time, started to explain carb counts and blousing and updating basal rates based on exercise and eating habits. I started to check my BGs at regular intervals each day. I got off of the Lantus and started on Novolog. I started on an insulin pump, and my A1c started to come down.
Still, I felt pretty alone with my diabetes. Then my wife heard an interview on local public radio with someone who talked about an “artificial pancreas” and made me listen to it. I said, “Great, what do you want me to do about it?”. She said, “Find out about it. Someone online should be blogging about diabetes. Why don’t you do a Google search?”.
I did, and for the first time, I had that “Holy crap, I’m not alone… Holy crap, me too” moment. I began to learn even more, and talking to people living with and not living with diabetes. I remember having conversations with people at work and finding out that almost all of them were touched by chronic illnesses in one way or another. I had a conversation with one of my bosses where I was able to explain, and have understood, I think for the first time, that diabetes isn’t as easy as take a set amount of insulin, eat a set amount of food, exercise a set amount, and everything will be perfect. You can do everything the same every day for a month and have 30 different days’ worth of results. I learned how to say that from the diabetes online community.
I’m not sure what the moral of this story is. Sometimes I just need to write things to get them out of my head, you know? If there is a moral for me, it’s maybe that people act differently given different circumstances, and those circumstances are often influenced by things we’re unaware of at the time. I know I can’t influence every situation the way I want to. But I know that knowledge helps me deal with situations better, and I know that acting with empathy for all and perseverance through the difficult times can help me hold my head high even when the going is tough.
I read something recently about a workshop where a speaker was talking about acting with integrity in everything you do, and he mentioned that everyone gets pigeonholed at one point or another. His advice was, when you do, make sure your pigeonhole isn’t full of shit. The workshop was for new National Football League coaches and executives. Maybe the workshop should have been for existing coaches and executives. I don’t know. My question to you is:
What’s in your pigeonhole?
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