Pump Vacation - need advice on the practicality

For a variety of reasons, I need time away from my pump. I’ve been on it for about 11 months now and I still can’t say that the switchover was worth it.
It has improved control in some areas of diabetes living, but almost every time I put in a new infusion set, my sugars shoot up a LOT! My body is pretty non-responsive to the insulin going through for the first 4-8 hours. I’ve been able to keep this under control (ish) by changing sets at night time, but they always rise.

[I’ve researched this a LOT, so please don’t suggest things unless you have a brilliant suggestion. These are the things already checked: I’ve tried every variety of infusion set and length. The problem is minimized by metal infusion sets, but not eliminated. It’s not the insulin itself. It is not scar tissue, unless my entire body is covered in scar tissue - I rotate all around my body, arms, back, legs, stomach, bum. Some areas are better than others, but none are prefect. The pump has been troubleshooted - it works. The insulin is going in, I just don’t know what is happening to it once it is in there.]

In conclusion, until I can find an endocrinologist that can solve this problem, pumping = highs every few days. Those highs = higher A1C. Since starting on the pump, my A1C has risen to 8.4 - completely unacceptable.

Either way, I’ve decided I’m going to go off the pump for a few months so I can see how things go. I’ve learned a lot about insulin and the body since becoming a pumper, I hope that I’ll be able to make improvements in my MDI-ing.

What I AM looking for are suggestions about the practicalities about switching between pumping and MDI.
I worked hard to refine my basals. I always thought that my Lantus worked pretty damned well before pumping, but now I’m wondering if my bgs are going to be all over the place because of it.
I’m looking forward to being untethered. Everyone told me that I would get used to having the pump attached 24-7, but I sure haven’t. It makes me restless at night, I hate things in my pockets. Not that I was ignorant of my condition while on MDI, but I could actually have a moment of the day that wasn’t regarding diabetes.
Does anyone else find that - I remember on MDI, I would have periods of hours where I wouldn’t eat, wouldn’t take insulin, and my sugars were fine. People told me that was the main benefit of the pump - you could do precisely that… but you can’t. You can’t just let it be - you can feel the pump in your pocket, it’s always there!

Wow, apparently this post was less about wanting advice, and more about passionately needing to free myself from my pump.
Does anyone else’s pump make them sad on a fundamental level, not just frustrations here and there?

What is DP?

I felt liberated earlier tonight, I read some woman’s blog(found through a google search for pump vacation) where she voiced a different perspective.

She mentioned some of the realisms which contrast the everything-is-perfect-on-the-pump mentality that I find on this site, specifically, such as:

Exercise - ‘in order to take advantage of the pump, you need to plan out your day’. The resources recommend setting your temp basal an hour or 2 before exercise and a few hours after that. True, it’s only pressing some buttons, but how organized does one need to be?!?

Tethering - She actually admitted to the fact that having something strapped to you 24/7 is a Pain in the A$%!

Dave, I do thank you for your perspective! I’m jealous - I wish that pumping was the shining star for me that it appears to be for you.
It’s interesting how differently people see things - I think that we’re much more ‘committed’ to a pump than to long-acting insulin. Bottom line, especially with these insulin analogs, If I don’t want to eat for a day, I can take ONE NEEDLE and then prance around naked for the next 24 hours before requiring more insulin.
Where do you tuck your pump when you try to prance around naked for 24 hours?
I just feel that, in terms of mental health, a non-external form of insulin will be better for me. Not to oversimplify, but with long-acting basal analogs, you inject and then let it work inside you!

You mentioned how pumping liberates you from a set schedule… I’m so jealous! There are not enough options on my pump to even come close. As a grad student and musician, no two days are alike. Often times, I don’t know what tomorrow will be like - how late I will stay up. Some days, I’ve changed between basal patterns multiple times to match up with how things are going. When you have the dawn phenomena and your morning varies anywhere between 6am and noon for a starting time, you’re never sure when dawn actually is!
What I found on the pump, much moreso than MDI, I needed to mould my life to fit my pumps programs.
At least when you are on a flat line of basal insulin (Lantus), you have a baseline to work against.

Ok, enough soapboxing for me tonight.
Thanks Dave for entering into this dialogue with me.

Best wishes,
Michael

Michael, we have a long-time member here, Scott Strumello who went back to MDI after pumping. He’s a very smart guy, and I’m sure he would give you his personal experience.

Michael,
Sounds like you are having some issues with your pump and accepting a device in your pocket. I was having serious thoughts about going back to MDI as well to get a little break from my pump as well. I have having some issues with blockages, infusion sets, and some of the other little things that annoy me. I felt, like you it was becoming a bit harder to manage.

I was getting “pump lazy” and after 2 weeks of wanting to take a break, I never did. A good choice for me. The advantages out numbered MDI therapy for me. Lantus is great, but a steady 24 hour basal pattern doesn’t work for most humans. How could you need the same amount of basal insulin while you are awake compaired to when you sleep?

I know you said you tried all the different sets, but are you changing them every 2-3 days?
Those are just some of my thoughts. I am glad i didn’t not switch back to MDI, I had to grind through it. All in all it was me, not my pump that was causing the problems.

Micheal , are you in the Lower Mainland …ie the Vancouver , BC area ?? I would recommend to get an appointment with Endo Dr. Clarissa Wallace , who has her office in New Westminster …maybe she can guide you . She was my Endo , when I lived on the coast. Is highly respected in the Diabetes community .

Hi Michael. I’m sorry to hear you’re having such a rough time. I’m curious what were your reasons for switching to the pump and if any of them actually worked out for you. I think a lot of us go through a WHY DID I DO THIS phase. I wish someone could figure out your problem so you can really discover more pros than cons. Maybe something like the omnipod would make you feel less tethered in the future?

Good luck and keep us informed.

Hi Michael. I’m sorry to hear you’re having such a rough time. I’m curious what were your reasons for switching to the pump and if any of them actually worked out for you. I think a lot of us go through a WHY DID I DO THIS phase. I wish someone could figure out your problem so you can really discover more pros than cons. Maybe something like the omnipod would make you feel less tethered in the future?

Good luck and keep us informed.

It’s good to hear that someone else has been to this stage!

I’m not thinking of just giving up on the pump completely. I invested enough time and paperwork into getting a pump, I’m far too stubborn to let that go to waste.

I wish I could say I was being pump lazy. The problem is that on the second day of every infusion set, My sugars are GLORIOUS! I do work hard and my sugars on those days show it. This represents the potential of the pump, which I can never seem to fully experience. Depending on the site, I change after 2 days, 3 if it seems really good. When I start the new set, it’s slow and not-so-responsive on that first day. The particular problem I’m having doesn’t seem to be caused by the state of the previous set - I’ve changed it after a day and a bit, while the previous one was working fine - still the same problem. That’s the other thing - I can only really afford to pump if I am getting a full 3 days out of each set. I’ve already spent my pump budget all the way through November - another reason to go back to the 'poor man’s pump".

I’m looking forward to the pump vacation, obviously for some of the physical/aesthetic reasons mentioned earlier, but I’m also secretly hoping that I"ll finally see just how wonderful the pump can be, and go back on it with some renewed inspiration.

I wish I could have the omnipod, but that’s not going to happen. It’s not available in Canada and doesn’t look like it will get here soon either.

I’ve known all along why I did this, and I’ve been desperately trying to let the pump prove itself…
Over the last decade, so many people have heralded the pump as their saviour. I could never afford it. I convinced myself that MDI was just as good - I realized eventually that this was a defense mechanism, so when I found out I could get a pump for free through a government program in Ontario, I hopped on that and dumped my emotional baggage. It was one of the hardest things of my life to admit that I was in fact not getting the best results with my control. The happy ending to this story is when I overcome that hurdle , start on the pump and my life is better. Yay me, Yay Ontario!
Pumping HAS taught me things about how insulin works in the body and all that stuff, so I have improved my end of the control situation, but putting those things into action has not worked through the pump.

I’ll keep searching for the cause of this problem. And I’ll be sure to let everyone know when I do!

Thanks for the recommendation Nel,

I already got a referral to a diabetes team in Vancouver, just a hop, skip, and a jump from where I’m living. I’m going to give them a chance before I invest an hour of travel time each way to see an endo… But I will keep her in mind if things don’t work out in town.

I agree (yet again) with Dave. If you’re not comfortable on the pump, then by all means, go back to MDI. It’s all about personal choice and what helps to make your life easier. I can say that there have been times when I thought about going back to MDI. But it never took me long to leave that idea in the dust. I don’t have any suggestions for you, but I wanted to say that I would be feeling just as frustrated if I were having those problems and I feel for you. I think I might consider the same in your shoes.
I can say that there are times when I whistfully think of “prancing” or sleeping in my chonies. But then I realize that there are other reasons I might not do that unrelated to my pump (roomates, having to leave my room to go to the bathroom, the need to go outside at some point during the day, ect.) and it’s just not that important for me. It’s not devastating to me to have to wear bottoms. I’ve never felt the way that you do about being “tethered”. It simply doesn’t bother me to have something in my pocket, and I really don’t notice it’s there. I’ve never understood the aversion to tubed pumps. No matter how hard I try, I can’t seem to make it a big deal to be attached to something.
I understand what Dave meant about being “committed” to a long-acting after you take it. I feel the same way. It’s because after you take that shot, you’re done. There’s no adjusting you can make. It’s there and it’s working, and there’s nothing you can do to stop it. Where as, while you’re still connected to the pump, you CAN make last minute changes and adjustments. So it doesn’t feel like the same level of “commitment” to me.
Again, to each his own. I wish I had some advice for you. I just wanted to let you know that you’re not alone with your feelings, and to do what you feel is best for you without feeling guilty for it. Everyone is different.

Hi Michael:

Don’t feel Bad about taking a break from the pump. It’s NOT a sin. Many have done it for different reasons. Some stay with MDI, some take up the pump again. That’s their right. That’s your right.

I’ve been on many sites the last 8 years observing Diabetics, who thought about starting on a pump, then relaying their likes, dislikes and probems about pumping. Some not Happy with it, others feeling Better about pumping and some staying on the pump even though their blood glucose levels and A1c’s are terrible but they don’t want to be put down for giving up. Those last ones, I feel for.

Both MDI and Pumping can work Well, if given the Good Basic Support, help tips, the benefit of asking questions and freedom to do whichever they choose without flack.

Just relax and concentrate on YOU. I wish you Much Luck in whichever system that you choose.

Well, since you really don’t want a suggestion less than brilliant, that makes it much easier. Stop pumping and go back to using needles again.
“Wow, apparently this post was less about wanting advice, and more about passionately needing to free myself from my pump”.
I’d never want to go back. My pump and my cgms have freed me up to actually feel less diabetic than ever.
I hope you find what your looking for. I did.

Michael:

I think I saw you say that you take ONE SHOT a day on MDI. If you are speaking of Lantus, most People split their Lantus dose by 40/60, 50/50, 60/40 percent, since for some Diabetics Lantus does not last a full 24 hours. Check that out if you haven’t already.

It really is that simple, isn’t it.
Part of the reason I’ve been hammering at this issue, searching online, through medical journals and asking doctors about my particular problem - is curiosity. I refuse to believe that I am some medical oddity - there MUST be an explanation, and I want to find it out.
Thanks Ron!

Terrie8

I definitely don’t want to be one of those people who stick with it even though it’s not improving their levels. Unfortunately, I’m feeling lately like that’s the situation I’ve been in this last year. If I’ve actually learned what I think I’ve learned from pumping, my A1Cs and general control will be much better when I switch back to MDI - if that happens, then it’s an easy decision to stick with MDI. If not, then I’ll be in a dilly of a pickle!

Thanks so much for your support and kind words!

In regards to your second comment, A year ago, I was taking Lantus once daily and it worked perfectly for me. No overnight lows and generally things were pretty damned stable.
Lately, I’ve been thinking that with my new knowledge of my different basals throughout the day, I might overlap doses, BUT that doesn’t make a difference with an flat-lined insulin. I never had any reason to think Lantus didn’t last a whole day. I might talk to an endo about Levemir - looking at the studies on it, it seems to have a more pronounced peak, which could be useful to correspond with those times of day when I need more basal.
Nevertheless, I miss how well the once-daily Lantus worked for me.

YW Michael. I’ve put up with this battering and somewhat wrong info about pumping for some years. I find my Diabetes is easy with the system I use, even considering I have another autoimmunune disease that requires meds. that raise blood sugars. I gotta agree with you. When the basal testing is done correctly, the Lantus(I’ve not needed to try Levemir) works evenly.

The peak may be more pronounced with you, as with some. Most find that it has a slight peak. Definitely check it out.

Ron’s A1c is 7.3. Many People on pumps say that if your A1c is over 6.0, your not doing Good. Mine is 6.4 btw and my sugars are usually in the Good zone or near it. . :wink: People, People.

Thanks for checking up on me, at least it reminded me. That was my last test in June. I went down 1 to 6.3 on Sept. 25. I’ve never been one to care what many people say about anyone’s A1C except their own. But then again, some people care about everything that’s not theirs.

Well, most People check out a Person’s profile.

“But then again, some people care about everything that’s not theirs”.

You’re so right…like if someone else decides that they are thinking about taking a vacation from their pump because their A1c is TOO high.

Thanks for the lovely note Terrie. My profile is at least not hidden. I will show you my lab results so you won’t call me a liar again.