As of today, I've been wearing an insulin pump for exactly 53 days, so I'm pretty much an expert (kidding!). Here is a list of the things I've learned about my new friend:
1. Pumps need a name. I talk about (and swear at, and whine about, and sing to) mine a LOT, and giving it a name has made me smile a little more while doing it. I call mine Harriet because she's a shy bookworm. Or that's the personality I've made up for her. We've gotten very close.
2. Pumps, and more specifically infusion sets actually don't hurt to wear! I usually even forget that I'm wearing mine, unless there's something wrong with my set – then I feel it. But otherwise they're pretty comfortable. Except when my skin gets itchy.
3. Infusion sets are NOT foolproof. There are many ways an infusion set can let you down. In one of the first ones I used, the cannula turned out to be bent at the end, so my insulin wasn't being dispensed properly. Luckily, between the discomfort and the super high blood sugars it didn't take me too long to figure out what was up. So bottom line: if it feels wrong, it probably is! I often don't know exactly what's wrong (I'm not that good), but I've learned that it's often easier to just abandon ship, rip out a questionable set and start again than to spend hours and hours fiddling with it and watching my BGs creep steadily upwards.
4. Set changes take time. There doesn't seem to be way around that. Drawing up the insulin is always a tedious process. I've managed to cut my time down from the 20 minutes it took me to my first few successful set changes, but I generally still need to put aside at least 10 minutes to get it all done (I use an Animas pump). I'd love to cut that down even further, but I honestly don't see that being possible, between getting everything together, and washing my hands, and opening things up, and removing the old set, and inserting the new one, and prepping the insulin, and priming the pump, and then disposing of everything properly (which I totally do). Using insulin that's already at room temp also makes a huge difference. But for that to work, the trick is to take it out of the fridge ahead of time (i.e., at least 15 minutes before ... I'm still working on that one!).
5. I've had to pry the lid off of my stupid sharps container to fit my used infusion sets inside. Perhaps other pharmacies and/or doctors offer more practical waste disposal options for pump users, but not mine. My container has a tiny little hole, for syringes and lancets and the like, so I've had to get creative.
6. Pumps are not easily concealed. I'm not exactly "out and proud" about my diabetes, and am not looking to educate people about my daily medical practices, so I refuse to wear my pump in any way that will lead to questions or curiosity. Maybe someday I'll be confident enough to wear it in my pocket or on my belt or something, but not yet. Luckily, though, there is one place I've discovered I can hide my pump so that it's 99% invisible: on the front of my bra. Depending on the type of shirt I'm wearing, I often can't tell it's there, and if I can I just throw on a scarf over top to better conceal it or a tank underneath to further smooth things out. Right between the girls also happens to be the most comfortable place that I've found to keep it, because it doesn't move around, my tubing doesn't get caught, and it's never in the way of anything. I realized pretty quickly that wearing it anywhere on my pants was going to get REALLY irritating at bathroom time. I even keep it on my (sports) bra at night, using the little belt clip it came with. I've come to find the rhythmic "tick" of of my basal program oddly comforting, now that it's so close to my face. At least if I can hear it I'm pretty sure it's working! Plus, J says I look like Iron Man when I bolus, because he can see the screen glowing on my chest through my shirt. So it's win-win really.
7. The pictures in the infusion set instruction booklets are WAY more helpful and useful than the words printed inside – at least for the "Inset" infusion sets I use with my Animas pump. Maybe I'm just a visual learner, but the text instructions get me really confused, really fast.
8. Sometimes my body just hates me, and my pump. I don't even know if there's a reason (bubbles ...?), or if it's just karma getting me back for past indiscretions, but every couple of days I get a reading that stuns me for a minute because of its sheer randomness. So maybe I don't have the pump totally figured out just yet.
9. Testing increases three-fold. At least for me. So while your other body parts might thank you for sparing them the horrors of multiple daily injections, your fingertips are thoroughly hating the whole process. I'm still not at the point where I'm comfortable sleeping through the night without testing partway, because I'm terrified of DKA – which, as my CDE likes to remind me, can develop in as little as 4 hours. And since I generally sleep for more than that, I've developed a new paranoia about it. Anyway, in addition to overnight testing, I'm also testing a lot more frequently during the day. Partly because it's fascinating (I still don't quite believe that I can live WITHOUT poking myself with a needle multiple times a day; it's as close to a miracle as I'll probably ever get), and partly because I'm still trying to understand my confounding enigma of a body with all of its hormones and sensitivities and things so I can verify that my pump settings are where they should be, or correct them as necessary. I'm hoping this process has taken a while for other people too, and not just me, because I've been working on it for nearly two months and am pretty sure I still have a number of adjustments to make before I find myself anywhere near the zone of optimal control. A CGM would be sooooo handy right about now ...
10. I generally enjoy eating a lot more (because, thankfully, I no longer associate it with sharp, pointy objects), but only when eating something that's familiar, and/or comes with nutritional information. I find eating out a lot more nerve-wracking, though that's probably owing more to my own paranoia than to the pump itself, which brings me to ...
11. I feel more pressure to do well on the pump, and to have better numbers than I did on MDI. Like there's less tolerance for errors, because I can give myself exactly the insulin I need, right down to hundredths of a unit. So any errors are my own, for the most part – barring any infusion set nonsense. There's no reason optimal control shouldn't be achieved now. And while that's huge and awesome, it's also extremely scary to someone who has struggled, and failed for so long to get there. I have to wonder if maybe I've always been the problem, just the bad carpenter blaming his tools, and now I'll find out once and for all because now I have the best possible tools I could ask for, so there are no more excuses. It makes me feel exposed, but hopefully someday I'll be able to let myself off the hook and stop feeling so guilty for everything. But then again, the guilt could just be the good Catholic in me :)
What have you learned as a pumper? I'll be sure to add more as I go, and any I find in the comments section too! Happy pumping!
1. Pumps need a name. I talk about (and swear at, and whine about, and sing to) mine a LOT, and giving it a name has made me smile a little more while doing it. I call mine Harriet because she's a shy bookworm. Or that's the personality I've made up for her. We've gotten very close.
2. Pumps, and more specifically infusion sets actually don't hurt to wear! I usually even forget that I'm wearing mine, unless there's something wrong with my set – then I feel it. But otherwise they're pretty comfortable. Except when my skin gets itchy.
3. Infusion sets are NOT foolproof. There are many ways an infusion set can let you down. In one of the first ones I used, the cannula turned out to be bent at the end, so my insulin wasn't being dispensed properly. Luckily, between the discomfort and the super high blood sugars it didn't take me too long to figure out what was up. So bottom line: if it feels wrong, it probably is! I often don't know exactly what's wrong (I'm not that good), but I've learned that it's often easier to just abandon ship, rip out a questionable set and start again than to spend hours and hours fiddling with it and watching my BGs creep steadily upwards.
4. Set changes take time. There doesn't seem to be way around that. Drawing up the insulin is always a tedious process. I've managed to cut my time down from the 20 minutes it took me to my first few successful set changes, but I generally still need to put aside at least 10 minutes to get it all done (I use an Animas pump). I'd love to cut that down even further, but I honestly don't see that being possible, between getting everything together, and washing my hands, and opening things up, and removing the old set, and inserting the new one, and prepping the insulin, and priming the pump, and then disposing of everything properly (which I totally do). Using insulin that's already at room temp also makes a huge difference. But for that to work, the trick is to take it out of the fridge ahead of time (i.e., at least 15 minutes before ... I'm still working on that one!).
5. I've had to pry the lid off of my stupid sharps container to fit my used infusion sets inside. Perhaps other pharmacies and/or doctors offer more practical waste disposal options for pump users, but not mine. My container has a tiny little hole, for syringes and lancets and the like, so I've had to get creative.
6. Pumps are not easily concealed. I'm not exactly "out and proud" about my diabetes, and am not looking to educate people about my daily medical practices, so I refuse to wear my pump in any way that will lead to questions or curiosity. Maybe someday I'll be confident enough to wear it in my pocket or on my belt or something, but not yet. Luckily, though, there is one place I've discovered I can hide my pump so that it's 99% invisible: on the front of my bra. Depending on the type of shirt I'm wearing, I often can't tell it's there, and if I can I just throw on a scarf over top to better conceal it or a tank underneath to further smooth things out. Right between the girls also happens to be the most comfortable place that I've found to keep it, because it doesn't move around, my tubing doesn't get caught, and it's never in the way of anything. I realized pretty quickly that wearing it anywhere on my pants was going to get REALLY irritating at bathroom time. I even keep it on my (sports) bra at night, using the little belt clip it came with. I've come to find the rhythmic "tick" of of my basal program oddly comforting, now that it's so close to my face. At least if I can hear it I'm pretty sure it's working! Plus, J says I look like Iron Man when I bolus, because he can see the screen glowing on my chest through my shirt. So it's win-win really.
7. The pictures in the infusion set instruction booklets are WAY more helpful and useful than the words printed inside – at least for the "Inset" infusion sets I use with my Animas pump. Maybe I'm just a visual learner, but the text instructions get me really confused, really fast.
8. Sometimes my body just hates me, and my pump. I don't even know if there's a reason (bubbles ...?), or if it's just karma getting me back for past indiscretions, but every couple of days I get a reading that stuns me for a minute because of its sheer randomness. So maybe I don't have the pump totally figured out just yet.
9. Testing increases three-fold. At least for me. So while your other body parts might thank you for sparing them the horrors of multiple daily injections, your fingertips are thoroughly hating the whole process. I'm still not at the point where I'm comfortable sleeping through the night without testing partway, because I'm terrified of DKA – which, as my CDE likes to remind me, can develop in as little as 4 hours. And since I generally sleep for more than that, I've developed a new paranoia about it. Anyway, in addition to overnight testing, I'm also testing a lot more frequently during the day. Partly because it's fascinating (I still don't quite believe that I can live WITHOUT poking myself with a needle multiple times a day; it's as close to a miracle as I'll probably ever get), and partly because I'm still trying to understand my confounding enigma of a body with all of its hormones and sensitivities and things so I can verify that my pump settings are where they should be, or correct them as necessary. I'm hoping this process has taken a while for other people too, and not just me, because I've been working on it for nearly two months and am pretty sure I still have a number of adjustments to make before I find myself anywhere near the zone of optimal control. A CGM would be sooooo handy right about now ...
10. I generally enjoy eating a lot more (because, thankfully, I no longer associate it with sharp, pointy objects), but only when eating something that's familiar, and/or comes with nutritional information. I find eating out a lot more nerve-wracking, though that's probably owing more to my own paranoia than to the pump itself, which brings me to ...
11. I feel more pressure to do well on the pump, and to have better numbers than I did on MDI. Like there's less tolerance for errors, because I can give myself exactly the insulin I need, right down to hundredths of a unit. So any errors are my own, for the most part – barring any infusion set nonsense. There's no reason optimal control shouldn't be achieved now. And while that's huge and awesome, it's also extremely scary to someone who has struggled, and failed for so long to get there. I have to wonder if maybe I've always been the problem, just the bad carpenter blaming his tools, and now I'll find out once and for all because now I have the best possible tools I could ask for, so there are no more excuses. It makes me feel exposed, but hopefully someday I'll be able to let myself off the hook and stop feeling so guilty for everything. But then again, the guilt could just be the good Catholic in me :)
What have you learned as a pumper? I'll be sure to add more as I go, and any I find in the comments section too! Happy pumping!