One of the most frequent questions I have gotten at diabetes events that I have spoken at-and in private messages-and even public comments on social media-has been ‘why aren’t you on the pump’ as though this fact was tantamount to my announcing a Tour de France bid on a unicycle.
But before I get into the gory details of that-I want to ask you to do something: look at this photo, and if you like it and you like what LivingVertical contributes to the world, CLICK ON THE BABY!!!
So recently, after a decade and a half of diabetes, I decided to crawl out of the primordial ooze and evolve into a “pumper”. I am very happy I decided to try it and I hope that my experience contains some useful elements.
I believe that everyone with diabetes has to have the confidence to manage their condition in the best way for them. Pumps are amazing tools, but one amazing tool may not be appropriate for every situation. I’ve always felt like the conventional wisdom is that if you’re not pumping you’re not doing the best job you can to manage your diabetes-so I am sharing my experience as an alternative to such technological absolutisms. Injections aren’t just for lazy people who are behind-the-curve-luddites who go about using flip phones and Internet Explorer on dial-up internet connections.
Over the years, this aforementioned stigma created an impression that if I had the pump, everything would change and be easier, despite the fact that my control was already very good overall. When I got lazy counting carbs or slacking off workouts, in my mind there was always the lingering hope that “if I just get on the pump, my A1c will be better and my control will improve”.
The reality is that I liked the pump. A lot. I got a loaner t:slim from Tandem. I know several people who work for Tandem, I’ve visited their HQ, and their pump is a slick article. Its user friendly and yet it’s a very powerful and precise tool. Here comes the “but”…
A pump isn’t right for me.
That’s right. I’ve said it. While we’re baring souls let me add that I also think beer tastes like piss and I don’t enjoy watching organized sports on TV. But lets stick with one heretical admission at a time. I spent days agonizing over this reality even after I knew in my heart that a pump wasn’t a good fit for me. The pump had been my last refuge and everyone on the Facebook Page raved about how much better it was and how I would love it and never go back to injections. I felt like a complete failure-my numbers were out of whack, highs were higher and lows were lower. My energy was depleted and I was afraid to exercise because I didn’t know how I would respond.
All the landmarks that helped me navigate blood sugar management, were suddenly gone. Years of research and “presets” went out the window and I was a rookie again. The final straw was when I woke up in the middle of the night to my baby screaming. I was low. She needed me and I was entirely useless. I staggered away into the kitchen and began gorging, shaking like a leaf. In 15 years, I didn’t have a nighttime low that incapacitated me like that. I’ve woken up with my meter reading as low a number, but not all “lows” are created equal. Lantus lows feel different to me and leave me much more functional and in control.
The reality is that I liked the pump. A lot. I got a loaner t:slim from Tandem. I know several people who work for Tandem, I’ve visited their HQ, and their pump is a slick article. Its user friendly and yet it’s a very powerful and precise tool. Here comes the “but”…
A pump isn’t right for me.
That’s right. I’ve said it. While we’re baring souls let me add that I also think beer tastes like piss and I don’t enjoy watching organized sports on TV. But lets stick with one heretical admission at a time. I spent days agonizing over this reality even after I knew in my heart that a pump wasn’t a good fit for me. The pump had been my last refuge and everyone on the Facebook Page raved about how much better it was and how I would love it and never go back to injections. I felt like a complete failure-my numbers were out of whack, highs were higher and lows were lower. My energy was depleted and I was afraid to exercise because I didn’t know how I would respond.
All the landmarks that helped me navigate blood sugar management, were suddenly gone. Years of research and “presets” went out the window and I was a rookie again. The final straw was when I woke up in the middle of the night to my baby screaming. I was low. She needed me and I was entirely useless. I staggered away into the kitchen and began gorging, shaking like a leaf. In 15 years, I didn’t have a nighttime low that incapacitated me like that. I’ve woken up with my meter reading as low a number, but not all “lows” are created equal. Lantus lows feel different to me and leave me much more functional and in control.
That’s right. I’ve said it. While we’re baring souls let me add that I also think beer tastes like piss and I don’t enjoy watching organized sports on TV. But lets stick with one heretical admission at a time. I spent days agonizing over this reality even after I knew in my heart that a pump wasn’t a good fit for me. The pump had been my last refuge and everyone on the Facebook Page raved about how much better it was and how I would love it and never go back to injections. I felt like a complete failure-my numbers were out of whack, highs were higher and lows were lower. My energy was depleted and I was afraid to exercise because I didn’t know how I would respond.
All the landmarks that helped me navigate blood sugar management, were suddenly gone. Years of research and “presets” went out the window and I was a rookie again. The final straw was when I woke up in the middle of the night to my baby screaming. I was low. She needed me and I was entirely useless. I staggered away into the kitchen and began gorging, shaking like a leaf. In 15 years, I didn’t have a nighttime low that incapacitated me like that. I’ve woken up with my meter reading as low a number, but not all “lows” are created equal. Lantus lows feel different to me and leave me much more functional and in control.
I was so torn. I wanted the pump to be right for me-it just felt wrong though and I couldn’t deny it. I felt guilty for putting up the white flag-which was made worse when I felt like I was being judged for not taking long enough to get used to it, as though there is a “right” answer and I obviously missed it. It upset me a lot. It still eats at me a little bit because I hate being challenged when I know what works for me and someone tries to backseat drive.
I did not choose to discontinue the pump trial because there were bumps in the road (high numbers, basal tuning etc). I knew that it would involve trial and error over months-but even when I got the numbers right it still just felt wrong. It’s like when you meet someone, you know within the first 5 minutes if you would sleep with them or not. You don’t have to know every intimate detail of who they are to make that call-and it’s not always about how attractive they are. It doesn’t always make sense from the outside-but you know.
Another way to look at it-I got to test drive a Corvette, but deep down I knew that the speed, looks and handling wouldn’t make up for the fact that I needed a minivan with my baby and budget crunch. Of course that won’t stop the asshat in the ‘Vette next to me from revving his engine at me when we are stopped at the red light, but deep down, I know what I should be basing my choices on: what works for ME.
So here are the reasons/factors that I can identify that impacted my verdict. I want to be clear that the t:slim pump itself is awesome based on my experience-and the same can be said of Tandem as a company. They really go out of their way to help you make the right decision for YOU, not for them, so I have felt free to be objective about this whole experiment-because that’s what diabetes is, after all.
- having another “thing” attached to me: I’ve struggled with a CGM which is lower profile and even after a few years I’ve never gotten used to it despite loving its impact on my management.
- insulin waste: filling the cartridge and tubing and changing them out every several days means that you are going through a lot more insulin that isn’t making its way into you.
- bad sites: if you have a bad site, you have high numbers that can take hours to come down. Or if its hitting a blood vessel, precipitous lows. Either requires a bit of work to change tubing, and testing more after to ensure the problem is remedied.
- more “stuff”: a big part of my plan for trying the pump was to improve performance for the upcoming expedition. When I saw how much extra stuff (tubing, cartridges, tape, syringes) was required just for a week (let alone a month) in the backcountry, it threw me for a loop.
- less wiggle room: with 24 hour insulin on board you can get stuck in an emergency situation (nighted on a route, pinned down by weather etc) and simply take one injection and forget it-and it has more residual effect. Rapid insulin stops working after a shorter time and if you can’t get more, your sugar can go dangerously high pretty fast.
- lows feel different: when you’re on the mark with a pump, you’re ON. When you’re off, it feels like Dr Rubos wild ride. Lows on Lantus feel less debilitating to me unless they’re really catastrophic. I’ve not heard anyone else ever say that-but it’s definitely the case for me.
- user error/environmental variables: I didn’t come to my decision because “my blood sugar sucks and it’s this pumps fault”. I know that management skill comes with time, data and repetition. I know it’s a shoddy carpenter who blames his tools and I think I’ve been clear that I did not come close to mastering the pump. Having a newborn and training for an exploratory climbing expedition are also wildly impactful variables. Having said that, this reality does little to mitigate the preceding the factors.
The bottom line: insulin, insulin delivery devices and diagnostic tools are all just that. Tools. No tool will be better than their user, and no tool is without its drawbacks and benefits. I don’t deny the obvious benefits that are widely cited in relation to insulin pumps, I just don’t feel like they match up well with my requirements. Simplicity counts for A LOT, and while the precision a pump offers is awesome, it is offset by greater complexity.
- having another “thing” attached to me: I’ve struggled with a CGM which is lower profile and even after a few years I’ve never gotten used to it despite loving its impact on my management.
- insulin waste: filling the cartridge and tubing and changing them out every several days means that you are going through a lot more insulin that isn’t making its way into you.
- bad sites: if you have a bad site, you have high numbers that can take hours to come down. Or if its hitting a blood vessel, precipitous lows. Either requires a bit of work to change tubing, and testing more after to ensure the problem is remedied.
- more “stuff”: a big part of my plan for trying the pump was to improve performance for the upcoming expedition. When I saw how much extra stuff (tubing, cartridges, tape, syringes) was required just for a week (let alone a month) in the backcountry, it threw me for a loop.
- less wiggle room: with 24 hour insulin on board you can get stuck in an emergency situation (nighted on a route, pinned down by weather etc) and simply take one injection and forget it-and it has more residual effect. Rapid insulin stops working after a shorter time and if you can’t get more, your sugar can go dangerously high pretty fast.
- lows feel different: when you’re on the mark with a pump, you’re ON. When you’re off, it feels like Dr Rubos wild ride. Lows on Lantus feel less debilitating to me unless they’re really catastrophic. I’ve not heard anyone else ever say that-but it’s definitely the case for me.
- user error/environmental variables: I didn’t come to my decision because “my blood sugar sucks and it’s this pumps fault”. I know that management skill comes with time, data and repetition. I know it’s a shoddy carpenter who blames his tools and I think I’ve been clear that I did not come close to mastering the pump. Having a newborn and training for an exploratory climbing expedition are also wildly impactful variables. Having said that, this reality does little to mitigate the preceding the factors.
The bottom line: insulin, insulin delivery devices and diagnostic tools are all just that. Tools. No tool will be better than their user, and no tool is without its drawbacks and benefits. I don’t deny the obvious benefits that are widely cited in relation to insulin pumps, I just don’t feel like they match up well with my requirements. Simplicity counts for A LOT, and while the precision a pump offers is awesome, it is offset by greater complexity.
This is not meant to persuade for or against any treatment regimen. This CERTAINLY is not meant as medical advice. This is one mans experience. Team LivingVertical has several pump users who will be sharing a very different perspective from my own during this summers expedition. Help us back the film so it gets made and the stories get told
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Why do I get the feeling there’s a wee bit of the ‘control freak’ at work here? Balanced write up though!
Glad you got to check it out and you gave it a fair shot. So true about the amount of gear needed. You have to be true to yourself and find what works best for you. I don’t think it makes you a luddite. It makes you true to yourself.
The pump was the right choice for my son. Your write up makes me see a very different side. But I think one of the biggest differences is that you have had very good control on the injections. As a Mom, it really hit me when you said you couldn’t take care of Lillo because you were too low and had to take care of yourself. It was the right call for you at this time in your life. It may be that my son will go back to injections one day, who knows? The bottom line is doing what feels right and works for the individual. No one person can dictate what that will be for another. All the best to you and thanks for sharing!
I have been a pumper for over ten years. Almost exactly 1/3 of my life as a diabetic. I began pumping out of necessity, the long term side effects of a poorly controlled adolescent and young adult had started and the ten insulin injections I was taking daily, were literally a pain in my ass, thighs, stomach…..
Anyways, reading your piece is a great reminder to me. Especially your point, and I quote “No tool will be better than their user…” I sometimes take advantage of the simplicity, and convenience a pump provides. Takes any guess work out of the…..work.
Thanks for your blog. Its truly inspirational, and your baby is a very beautiful and fortunate baby, to have such a wonderful father.
Pumping isn’t for everyone. I’m just SO grateful to have gotten one after daily multiple injections just didn’t cut it for me. You have other hills to climb, well okay mountains!
Steve, I’m glad you tried it! You may want to look into expert - no attachments but benefits of bolus advice and insulin on board. The pump isn’t for everyone, but you are such an inspiration to us, no matter how you get the insulin in!
Thanks so much for leading me to this post. I have been type 1 for 49 years and always felt free to move until I started pumping 10 years ago. I might have to take a pump vacation so I can resume my biking, golfing, and shopping !! I never liked shots but pumping I feel like a prisoner but of course just read an article on how pumping is better for life extension but this is not a life.
Thank you for reminding me of this post! I may just have to republish it! Be free!!!
Great article! You mentioned so many points that resonated with me.