After a few infusion site failures of late, I’m starting to become really self conscious. After every new site change, I become really paranoid of whether it’s a failure or success.
I poke my infusion site, trying blindly to detect a kinked piece of teflon that should be sitting underneath my skin. I prod around the infusion site on my stomach, trying to feel bruising and pain. I stand still while my pump is delivering an insulin bolus, waiting on edge to detect any stinging. I lift up my jumper compulsively, watching the colour of the skin underneath my site like a hawk.
I think about whether the skin tissue underneath my infusion site is strong enough to handle 3 days worth of insulin boluses. I frequently glance at my Total Daily Dose history on my pump, questioning whether it’s too high. I feel guilty for the carbohydrates I am consuming, for the sake of the subsequent insulin boluses that will have to go underneath my skin.
I check my levels like crazy after a site change, impatiently looking for signs that the insulin is heading successfully underneath my skin. I keep an eye on glucose movements like a hawk. In a moment of paranoia on Saturday, I even ripped out a perfectly good infusion site because the correction was taking too long to work it’s magic.
I draw dots on my stomach in permanent marker, in a desperate bid to keep on top of site rotations. I stare persistently at the real estate on my stomach, deliberating over just the right spot to place my new infusion site. I worry about how soon I will be able to re-use an area of real estate again.
In moments of site failures, I question whether this is really worth it. I think about results around my diabetes, and I’m almost certain that I won’t see any improvement yet. I’d be lying if I said I haven’t had fleeting thoughts that maybe this is not working for me. I worry that I won’t be able to make this work for me. I stand in my room for minutes on edge, pacing, deliberating over a site change or a shot of Lantus.
But when I think about going back to Lantus, I think about the level of control I will lose around my basal insulin rate. I think about how unfocussed I was on injections, blindly guessing and correcting all the time. I think about all of the time and investment I’ve put into this insulin pump, and I know that I’m not ready to pull away from it just yet.
Aw Frank. We are in the same place as you and it’s rough. No advice, just empathy x
Thanks, Rachel. Thinking of you and your boy, too.
Try different infusion sets!
Whatever you decide to do, you can do it 🙂
Re: troubleshooting site/infusion kinks, depending on your pump there’s often a few different types of sets available. Might be a matter of finding the right one for you. I know medtronic do a steel cannula one, cannulas of different lengths and so on.
Ah, Frank! You know I have totally been there with this stuff. It is so exhausting. But, I will give you the advice that my Endo gave to me when I was experiencing the opposite of this (frustrations with the return to MDI after 10 years of pumping!): Stick to it for a little bit longer if you can. It may simply be that your body is adjusting to a different insulin delivery system.
But with that said, there is freedom in being able to choose how you manage your own diabetes. It is your choice, and you can take a pump vacation whenever you want! It’s up to you whether it becomes an extended stay, or just a weekend getaway. I hope that whatever happens, it becomes less frustrating for you soon!
Thats frustrating for you Frank.
You’ve probably tried it all, but I found after a few trials and errors that the following works for me:
– Run a higher temp basal for the first few hours of putting a new site in. A new site doesn’t have the pooled reservoir of insulin that a site collects over its days in your skin, so when you change sites you actually have less insulin than normal. I run 150% for the first 2 hours and then 120% for the next 4 hours after that. Obviously, your diabetes may vary.
– Leave your old site in for 3 – 5 hours after you change your site, just in case of a site failure, you can swap back to the old site until you’re mentally ready to do a new site – for me sometimes if a new site fails and I swap back, I might not want to do a new site until the next day.
– Try a different type of canula. In fact I use 3 different types of canulas, each works better in a different area of my body.
– Try new real estate. I probably have a bit more fat stored around my body, but I alternate between thighs, stomach, hips, my back and my arms. It’s about 3 months between each area getting used again so there’s less scaring causing less site issues. (for places where you have less fat, you can use a shorter canula length).
I know its hard, especially when you’re high after a new site change, but try to limit your testing when a new one has gone in. Most people I talk to and myself included run a little high for the first few hours and you just need to know that it can be normal and that as the insulin starts to pool your BGLs will come down.
Hope you manage to find something that works for you.
I do agree about trying different infusion sets. It makes sense to keep trying.
I referred your article to the TUDiabetes.org blog page for the week of July 18, 2016.