Just started using this insulin pump, under more stress about diabetes management because of it than I ever have been. Going into high 300's/HIGH which never happens without it. Advice/thoughts?
I'm early 20's and do line/utility work in a very rural environment. My job is very physically demanding, does not allow for me to take breaks in the middle of jobs due to the nature of it to fix things unless it's eating something quick or taking insulin quick then getting right back to the job.
I've been using this setup for 7 days now, been using the Libre 3+ for a lot longer. I love the libre, and strongly prefer it over Dexcom (as dexcom almost killed me one time due to its inaccuracies, the larger unit, more frequent changes, and the pain that I feel in my job having it on my body and I will never trust it again.) My endo sold me on it after months of trying to convince me, I gave the Twiist setup a try.
The first few days were rough. I choose my stomach initially, but with my climbing belt on, it frequently pulled it out, caused line blockage alerts, etc. I had to go home early to change it between my calls I had, which was extremely inconvenient and set me behind for the day. I changed it to my upper thigh, I keep my libre 3+ on my thigh and have never had any issues with that placement other than initial pain when going up and down ladders on the first few days of insertion. It seemed to be working better.
These last few days have been miserable. Today was the worst.
Yesterday, I slept on it weird I guess and it had a blockage, waking me up time and time again as I fought the damn thing trying to get it to work and keep resetting it. But then it worked fine the majority of the day, until night time, where it stopped working for about 4 hours. Got it working again, then I woke up to a blood sugar of 340 and a blockage.
It didn't work at all today. I went home once in the morning, reset the line, tried to make it straight, loosened my belt (major inconvenience when I am working a physical job, but you know whatever, let's give it a try) and tried bolusing at maybe 350 blood sugar. It didn't get though a full unit before having another blockage. Now I'm on another job and can't do shit about it. Another hour and a half my blood sugar nearing 400, I went home, adjusted it again, did a physical insulin shot with my Humalog pen, and went back out (mind you, I can't just do this. Linework you can't just leave and come back like this, even if ADA allows you to treat medical things, it's not how this job works and I'm not changing that.) and it got another blockage.
Decided screw this, I'm taking this stupid thing off, went home again, took the pump and the tubing out, put it in a ziploc bag and took it with me. Glad I did, cause I learned that the insulin pump needs to be in range to check my blood sugar, and when I left it in my work truck while running a line, I couldn't check my blood sugar. Awesome- I love that! It has continued to beep what feels like every 15-20 minutes, absolutely pissing me off, telling me there's a blockage and I need to reset it, since about 1:00. it's 11:46pm right now.
Anyways we get home, I shower change and try it again. I bolus 10 units for 30g worth of drinks and 40g of food. My blood sugar at this point has been high all day but I haven't been able to eat much because of this stress and high blood sugar anyways, the only way I can bring it down is the pens, so fuck it, I'm hungry. Had a well balanced meal.
It keeps going up higher. And higher. And higher. I attempt to take more. Line blockage. Higher. Higher. My blood sugar went "HIGH" for the first time in years. It was over 350 for at least 2 hours. It didn't start going down until I took insulin with my pen, which the 6 units I took actually affected me and brought me under 200 for the first time all day. My head is pounding, I'm sick as a dog, and I'm dreading work tomorrow.
Here's the kicker. I have screenshots. Without telling me, this fucking pump decided to only bolus .12, or 2.1, or whatever units out of the 2, 8, or whatever I tell it to. It decides....I have a blockage, I'm done. it didn't tell me this. Which is asinine. I'm brand new to it and have been told by my endo and the trainer to let it do its' thing and expect it to correct itself without bolusing extra, and definitely not to take any lantus or humalog, and the fact that I was just sitting high for no reason despite multiple attempts to do more insulin because of a "line blockage" is insane.
I've tried, through the course of today, changing the site and the tubing thing. You might say change the disc itself out but do you guys understand how fucking difficult it is to get insulin? I'm not worried about the cost of it, I'm worried about the fact that I only get a certain amount every day and if I go over, I am going to completely run out? (USA, lol.) I can't just get extra. My doctor prescribes me more but insurance denies it due to lack of necessity. So if I were to waste all the insulin that I have in the disc, plus the units it pours out in the beginning, plus wherever else the insulin goes, plus not taking lantus and relying on more humalog, how much more am I going to go through?
This experience has been the most stressful and difficult in my time as a T1D. This is my first experience with an insulin pump. We haven't even gotten to cold weather (we have frequent -15 wind chills, I find myself in waist deep snow, and the snow is crazy up in central Maine.) I find it incredibly difficult to carry it around with my job and hobbies, and if it weren't for the fact that this was my last Libre3+ that I have, I would have ripped it all off already and turned the pump off.
I don't know if it gets better, but I'm done. And I'm going to be woken up every 15 minutes tonight because this damn thing does not know how to shut up. There's no way to turn off the line blockage notification, at least that I see. So not only do I feel absolutely terrible on the 4th of July, but I'm going to get zero sleep again, and probably none again the next day while I try to fight with a doctor, pharmacist, or whoever will let me talk to them to try to get another Freestyle Libre3+ sensor, due to this pump being linked to it.
I thought it was amazing, and the concept is amazing, it's great for a lot of people. But I have never been this stressed, and I was homeless for three months living in my car with no permanent address, no reliable way to get supplies, and insane temperature fluxuations and physical labor while I got myself back on my feet and got money again. I made do so much easier than I am with this pump.
Anyone else feel the same way? Anyone else felt this way and changed their mind? Anyone else have a physically demanding job that I question if this pump really is compatible with?