Hi everyone, I wanted to write a blog because I figure reaching out to a community helps when you feel like there is no where else to turn or no one else truly understands. I have lived with diabetes for 24 years and I am now 26 and getting married next year. I have met a wonderful man who is supportive and encouraging and does everything he can to further understand this disease and to help me manage it. It’s frustrating at times when experiencing a high BG due to pump failure or site failure. It’s hard because when I see a high BG I correct it but then it becomes a waiting game to see if it works and it’s scary, sometimes leaving me in a weeping mess, because you go through the steps of changing a pump site and have to wait again. I worry because of what this might mean in the future. I’ve talked with my doctor and they are doing everything they can, but soemtimes the solution is only temporary. These feelings keep going around and around and of course stress doesn’t help, I know this; I figures if I reached out to a community I might find support from others who share similar feelings and have had similar experiences that maybe we can share about those experiences and learn something new to try. I’m open to ideas. Thanks for hearing me out. God bless!
@cnmcwhirt hi Chelsea,
I’ve had t1 for 40 years now, and it can tend to get harder as you get older but life tends that way too.
My Niece went through a time of many many site failures - she was using a plastic cannula type set, in her case, a qiick-set 90 degree from Medtronic.
how often does this happen to you? are you using scarred sites? what kind of infusion set do you use? (straight/angled - metal or plastic) many people have issues with plastic cannula - but they make metal infusion sets too and it could make a difference for you. I recommended the “Sure T” to my niece and it was all it took.
yes coming down from a high from a set failure is a PIA (no pun intended) because your pump thinks you have a ton of insulin on board, so your correcting a 300 and your pump already thinks you have insulin so it “suggests” 0.1 units! I can’t tell you exactly what to do but for me, it typically involves a manual bolus or a syringe shot. You are supposed to correct, wait an hour, and if you see credible movement in your blood sugar you can have some assurance that whatever you did worked.
don’t forget that “fast” insulin isn’t all that fast, and that it can last for 4 hours. There is a big chance you can “stack” your bolus and end up very low. If I need to come down fast, I go for a 10-15 minute walk about 20 minutes after a bolus. be careful if you try this because the extra movement can make you drop very fast.
congrats on your upcoming marriage! best of luck! Please be aware that there are major life stressors in changing jobs, moving, and getting married. stress does bad things for my control.
hope you are doing ok please check back in!
Joe’s post brought me back to topic - I had keyed in on the word “frustration.” Sorry.
I think Joe’s response was right on track. It’s no fun when an infusion set, site, or pump fails to work as you expect. And high BG readings are not what you want to see, but they happen despite our best intentions.
Joe and Dennis have commented about “stacking” boluses. Scary stuff. You might read some of those posts (if you haven’t already).
Yes, stress makes diabetes management more difficult at times. You are a better judge of how stress affects you. If it doesn’t treat you well, then limit as much stress as you feel you need to.
Hang in there! And best of luck with the wedding!
@BillHavins Hi Bill, you didn’t need to delete those responses - the information on the psychological aspect of this disease is very important and can help people searching the web site. Please reconsider, or consider making those replies a separate topic so the material stays on this site! We appreciate your thoughtful input. -Joe
I’ll put it up as a separate post. I felt like it was kinda’ rude to miss Chelsea’s point. Thank you for responding directly to her concern; good job!
Thanks for your thoughts!
Thanks for the input. The biggest struggle I come across is infusion sites. Sometimes they work perfectly, others it starts failing right from the start. I’ve been watching for patterns, but there is a lot of inconsitencies. My diet doesn’t change and my worry is that I am going to overuse the areas that are accessible causing resisitence. Even though I am rotating sites, I am still concerned. I moniter what I eat and I exercise (at least try to lol, when my BG level is not low).
In an aforementioned post you mentioned writing things down, do you have any methods that have worked for you, or options that I can try. I’m open to new ideas. My biggest frustration comes from pump sites not working. Sometimes I put it on the back of my arm and it works seamlessly, but when I alternate it to the opposite arm my levels start to spike and wont stabalize regardless of how much I bolus. I haven’t had issues in the past, but it’s become something of a hit-or-miss. Any advise you can offer would be greatly appreciated. Thank you for all your input.
Hi Chelsea @cnmcwhirt, observing patterns and writing things down can be a big help - and there are certain things, such as repeated failure of an infusion site, that never leave your memory.
Many years ago I “labeled” or names my various infusion sites - now I know that #8, #6, #4 are completely out of bounds - 8 always bleeds and 4 and 6 no longer absorb the insulin. Depending on site, I now use four different cannula lengths 6mm, 9mm, 13mm and 17mm.
I use a calendar that I print from Outlook and keep with my pump supply [travel] kit on which I record site #, time, cannula length, etc.; I use the header and footer on the page to remind me of different things - a body map, cannula priming, etc. Sounds like a lot of work, but really simple. I also have a small 3x5 notebook in which I enter BG, Carbs, and dose - especially corrections; I leave the notebook where my wife can see it so she doesn’t need to be concerned about searching around to find me passed out again.
I think Dennis has detailed one way to do things. And, as you’ll notice, he appears to use different-sized cannulae depending on site(?).
There are some “pumpers” who have to do what Dennis does to get things to work well (or so it would appear). And there are some people who, for one reason or another, just can’t use a pump.
Because of my very limited body fat I can only use pediatric cannulae. And I only use one size. But I have a single infusion site that I have to avoid (it’s a 2” X 2” area about my left flank).
I wonder if finding a knowledgeable and patient physician/diabetes educator is the key to solving your challenge. It’s all about site and “site perfusion,” or so it would seem. Maybe Dennis can share a name or two with you.