The Highs and Lows of Type 1 Diabetes: The Insulin Pump & My Love/Hate Relationship With It

Tuesday, April 1, 2014



I have been on the insulin pump for about 5 years.  I did a ton of research before I chose which one to go with and I ended up going with the Medtronic MiniMed Insulin Pump.  I love the customer support they offer and all the new advancements that they are constantly making to their products.

Even with all I know now and the different options for other pumps out there I would still go with the MiniMed.  I like that is it small and I can easily hide it in my bra, back jean pocket or attach to the side of my shorts.  I would say that it has drastically helped get me in tighter control and made life much easier.  I can eat snacks when I want and do a correction right there and then.  It comes with me everywhere I go and only comes off when I take a shower or go swimming...or spray tanning ha.  I would also say that it is a must have when you are pregnant since insulin doses are much higher the further along you get and doing a million shots a day would just not be ideal.

But with all that said sometimes (like this week) I just want to rip it out all dramatically, cry, throw it across the room (okay maybe not throw it because it's so expensive) and say screw it and just go back to regular insulin injections.  Most of the time it works great.  I insert my infusion set into the top part of my butt (my favorite spot) hit the start button and we are good to go.  No problems.  But other times (more frequently than I wish) I will insert the infusion set and a shooting pain will go through my body telling me something is wrong.  I will pull it out and blood will start spewing out.  Other times I will insert the infusion set and I think everything is fine.  A few hours later I will test and I will be 300+.  I will take it out and it turns out the infusion set had somehow bent when it was inserted and insulin was never delivered to me.  This is beyond frustrating because I have to do it all over again plus for the remainder of the day I cant eat or do much of anything until I get my blood sugars back on track from something that I did not even cause.  This always seems to happen at inconvenient times too like when I am on vacation or out with my family.  I do always bring a back up just in case but it still puts a major damper in my day.

Now you may be thinking, "Well maybe you are using the wrong infusion set or inserting in the wrong spot?"  The truth is I have tried all of the different kinds and inserted in all kinds of places on my body and it still happens every so often no matter what.  I have told my Endocrinologist about my pump frustrations and told me that sometimes people go on "pump vacations."  This means that for a few weeks or even months you don't use your pump and go back to insulin shots.  I have thought about it but haven't done it yet.  The thought of being without my little gadget that I have been attached to for so long is frightening, but nonetheless the thought is still on my mind.

If you are type 1 diabetic I would love to hear if you struggle with your pump as well and how you deal with it?  I would also love to hear if you have ever taken a pump vacation and what the results were.

See all the posts of this series here.

27 comments:

Honor Youngs said...

Hi Lindsay! I am so with you on this. I've never actually heard of taking a pump vacation, but I'd consider it after having more than a few problems with my pump. In one instance I was hospitalized after forgetting to put my pump on before bed, (my bad, I know,) and I went into DKA. Oddly enough, the doctor who took care of me had mentioned that he did not ever recommend using the pump because he had seen it fail so often. It's discouraging, because for the most part it works great, and is so convenient, but maybe a vaca would be a good idea? Ah, boo. If you do attempt, I'd definitely like to know how you fare.

Anonymous said...

This is interesting to read that the pump is not always perfect. I feel like my doctors always push it on me even though I insist I do not want to be on it. My control is tight enough that the pump wouldn't improve my ha1c by much. yes, I have to take multiple shots a day, but I find that more convenient than wearing something. It is nice to read an honest account that doesn't sugar coat the fact that the pumps aren't always a perfect answer. But I'm so sorry that you are having trouble with yours! I love reading your blog. Thank you for awesome recipes!

salla said...

you are not alone. My 10 year old niece has had a pump for about the last year and some days the infusion set will leak, will crimp, will not insert right... other days she flies through with no issues.

That said, for a kid, a pump seems to be a MUCH better solution than constant shots. Now if she wants seconds of dinner, or a treat while we are out, it is no big deal. No shot needed. Plus, she loves being in control herself. Will be interesting to see how she deals with it as she grows.

Anonymous said...

Hi, this is Kelsey. I wore an insulin pump for 5+ years - during two pregnancies. But, about 2 years ago I went back on injections and haven't seriously considered returning to pumping. I use Lantus as my basal insulin (given in 2 injections daily) and Humalog for meals and corrections. I think it's much simpler and makes me think more critically about what I'm going to eat. I eat low carb (often Paleo but not always) and find that I don't really need the pump's ability to cover things like pizza. Basically I considered it the choice between wearing a pump so I could eat like a "normal" person or choose a healthier eating plan and be pump free! Since you already eat low carb/Paleo, Lindsay - I'd think you'd have a fairly easy time on injections. Lots of choices for us diabetics these days! :)

Lindsay @ Delighted Momma said...

I really appreciate the feedback I have read so far! It's nice to know others are experiencing the same things.

Elizabeth said...

I just recently got on the pump at the end of last summer, and so far I do really like it. I'm on the Accu-Chek Combo System and I HIGHLY recommend it to anyone who is pump shopping. I chose this one because it has bluetooth technology that allows me to place my pump somewhere on my body and then forget about it. 99% of the time I put it in the little "bra pouch" that the company sales and that clips to my bra. Since it is bluetooth, my meter functions as a sort of pump remote and it delivers the insulin to me that way. I LOVE IT.

I am considering a pump vacation this summer though. I'm a teacher with my summers off, and I'll be spending a lot of time at the pool this summer. So I'm wondering if it would be easier to just switch to injections. We'll see.

Overall, I would tell anyone that is thinking of going on the pump (especially women) that whatever "bad" things you expect from it just really aren't that bad--especially having something on you all the time and wondering how it will interfere with cute outfits and stuff like that. Really, it just becomes a non-issue.

I'm so thankful that this disease I have is so manageable and for the technology out there that helps us all be in the best shape we can be!

Martha Morrone said...

I took a "pump vacation" almost 15 years ago and never went back! I had the same frustrations with a MiniMed device that you're describing. Last fall I talked to my doctor about going back on a pump (considering pregnancy) but decided against it because my control with injections is really good and the CGM alone does the trick for me.

It's scary to change how you manage your diabetes no matter what the change is, but it shouldn't be that frustrating. If you're injecting, at least you know the insulin is getting in your system.

Good Luck!

Amanda McCafferty said...

I have had diabetes since 1998 - I am 26 and my endocrinologist asks me every time if I am anymore interested in a pump. From reading your posts about your pregnancies, I now believe I will be interested in getting a pump when I start to have children. I truly love reading all your posts about recipes, life, and your ups and downs with diabetes. It is so comforting! Thank you so much :).

-Amanda

Mindy said...

Dude, I can't relate even a little bit. All the previous comments, along with your post, make me want to kneel down and thank God for my health. I know it's old hat to you now, and you're totally used to it, but holy crap. What a lame ass thing to have to deal with!

Laura Wood said...

I wore my Minimed pump all throughout my 1st pregnancy with no issues whatsoever. But, then about 2 months after I had given birth, all of the sudden my quickset would not deliver insulin - I kept getting alarms almost as soon as I put it in. I finally learned (it took probably 3-4 months) that the 6mil set I was using just wasn't long enough to go through my extra "belly" that came with having a baby. I could use the 6mil in my back, but I had to switch to a 9mil to use in my tummy. Now I am pregnant again and still using my pump, which I have been on for about 12 years. The doctors kept telling me to go on a pump vacation too - but I didn't want the hassle of having to try to figure out shots after being on a pump for so long. I just kept trying different sites on my body and different sets offered by Minimed until I figured out what worked for my body. Diabetics just have to take their health in their own hands and do whatever it takes to make it work for you - whatever that is!

Robyn Thornburg said...

I was diagnosed T1D in 2008 and conceived my first child just 3 months later - I went on the pump at the beginning of my pregnancy. I did take a pump vacation once about a year and a half later, during the summer. I was tired of wearing a pump and wanted a more "carefree" summer - not having this thing attached to me! My endo looked at me like I had two heads - why would I ever want to go off the pump? After a couple of months of doing shots I went back on the pump and have been on ever since. I have the Animas Ping and I have some of the same issues - like a bent cannula causing me to spike to 300+!! It's usually after it's been in my body for a day or two, and for the life of me I can't figure out how it could've bent on its own?? And where does the insulin GO that the pump is still pushing through? Can't figure that one out.
I just started using the Dexcom CGM about a month ago and am looking forward to the new Animas pump (the "Vibe") that will communicate with it. In that sense I'm glad I chose Animas in the beginning.
All in all I'm thankful for this technology that keeps my BG relatively stable, even though I too want to hurl it on the front lawn every so often. I need the grace of God in these moments. Nice to know other people have the same struggles. Thanks for your openness. :)

Briley said...

I've been pumping for 12(!) years now, and I've never taken a willing break. I've had it die a few times, and I've always had Lantus as a backup. However, my body is not used to it (I was still using Lente & Regular when I started the pump). Three years ago I switched from a Minimed pump to an Animas pump for 2 reasons (completely unrelated to diabetes). The Animas pump is waterproof so I can stay in the water (float!) for as long as I want, and it has a remote bolus meter so I can hide it wherever I want and still get the insulin I need. This feature is especially helpful when all dressed up!
I know that none of this is about a pump vacation, but I hope this helps!

deanna said...

I love my pump! I also chose Medtronic based on customer service reviews. I have had great experiences with them, although I'm not a huge fan of their CGM - I wish it were more reliable.

I have only been a diabetic for a little over 2 years - diagnosed as a type 1.5, so when I got started I only used basal insulin. When I started on basal and bolus injections, I found it near impossible to get it right with my insulin and carb sensitivities. The pump has allowed me to control my bg to a greater degree than injections. I shudder to think of ever having to return to injections!

What I would LOVE is the option to go tubeless at times. I'm not a fan of wearing a huge pod stuck to me 24/7, but for waterpark days, beach days or boating days it would sure be wonderful not to worry about a pump malfunction because we fell in the water!!

Gigi said...

Thank you for these diabetes posts, Lindsay.

I don't pump, so I have nothing helpful to say about pump vacations. I'm going on 15 years T1 and have never been on a pump. If only they could make a pump with a brain! What we need is for something to read the sugars and act without us having to think about it constantly! Oh well. I'm grateful to be alive and I'm thankful for any helpful tool or gadget that comes along.

Anyway, my sugars are not great these last couple years, mostly because I put diabetes on a back burner. I have an appointment tomorrow and was considering finally giving in and getting a pump. Mostly, I guess, in hope that it will force me to put checking my sugars to the forefront since I'll have to be learning a new machine. But then, I read things like this and realize that the pump is not a magic pill that will make my HbA1C's normal. I have to be faithful! Consistent! Ack! It's so hard for me over the long haul. And, it's feeling like a loooong haul.

Do you use a CGM? I think maybe that is the next step for me. Can you use a CGM without having a pump? I guess I will find out tomorrow.

Sorry this comment doesn't really address the issue.

Marye Audet said...

I am not but my husband is. He has been on a pump since forever... he was diagnosed when he was 22 right before he was about to have enough hours for his commercial pilot's license. :( That was 35 years ago? ANYWAY.. he still struggles with his pump..exactly as you do.some days everything is good... other days he is skyrocketing to 400 and nothing is working. I wish I had an answer but I don't. :( Just know you aren't alone.

Suzanne said...

My daughter is 8, diagnosed T1 at age 6, wants no part of having a pump, despite tons of people telling her how great they are. I just wonder if it's worth it for her to try a pump. Wondering if it's something that would make life easier on her and give her more freedom or become more of a burden to have the attachment than just getting a shot and moving on with her day. She's also on the swim team so we have that angle to consider. Thank you for posting your thoughts, positive aspects and frustrations. Every story helps! I thoroughly enjoy your blog and appreciate your openness; plus the delicious healthy recipes, skin care and DIY tips are fabulous, too!

Samantha Everitt said...

Hi Lindsay! I've been pumping for three years with my Mini-med and I love it. I had a necessary pump vacation last year when mine failed, and to be honest, I couldn't sleep because I was so paranoid without it. I'd like to send EVERYTHING about being diabetic on vacation for a few weeks, but unfortunately it doesn't work that way!!

I can relate to pump issues/pain, as I'm very lean and have trouble getting good port sites. Anymore I use the quick set for my low-back/tush (sorry if that's TMI, but that's the best sites I get and there's no pain!!), and sometimes I use the silhouette on my stomach/side. My A1C went from 13 to 6 in about 3 months when I got on the pump! And I've been a 6 ever since. Personally, I'll never go back to shots - I'm very busy, on the road a lot, and this just works for me as it is discreet and easy to load up and go.

Worst thing I've ever done - gone on a week-long business trip to FL, and didn't pack my insulin in ice. My insulin lost almost all of it's effectiveness. Let's just say it was a LONGGG miserable week!!!

LisaEdison said...

Thanks for your post, I value hearing the perspective of a pump user first hand. Our Matthew is 3.5 years old and started the Mini Med a few months ago. I am wondering if there is any accessory that you have found to help conceal/wear your pump beyond putting it in your pocket. Thanks so much.

Sarah said...

I have had my Minimed for almost 6 years now. I LOVE their customer service, but I'm considering a waterproof Animas or Omipod for my next pump. This month maybe if I get over my Minimed separation anxiety. My biggest pump issue is hiding it under clothing and digging it out to bolus. I need waterproof and a remote option. I will miss Minimed's customer service!

I went on a one week "pump vacation" in 2012 that turned into 8 months. I needed old school NPH because I take half as much insulin overnight as I do during the day and the "peaks" it causes worked for me. I had pump vacations down to an art and could get my dosage figured out quickly.

In 2013 we decided to try for a baby so I went back on my pump and started with Dexcom. A little over a year later, I have my beautiful baby boy and haven't had a pump vacation. Maybe this summer for those beach days. I lose weight easier w/ my pump so that last baby weight needs to go first! However, I don't plan to EVER take an extended Dexcom vacation. That thing is a godsend!

Heather B said...

Hi, Lindsay ~

Like a few people have already said, I went on a pump vacation over a year ago (after 7 years pumping) and haven't gone back. I found that all those fine-tunings of basal rates and I:C ratios didn't ultimately make any difference to my control, but they did occupy too much space in my brain. I also experienced all the tech glitches that you mention and finally said "Enough!" My life feels a bit more normal with all that equipment out of sight. The biggest challenge is remembering to take my Levemir shots (or remembering if already *did* take my shot!).

All the best,
Heather B
T1D 26 years (dx @ 21)

Lindsay @ Delighted Momma said...

You guys are all so awesome! Thank you all for your feedback regarding this!

Robyn Thornburg said...

Lisa Edison - most pump manufacturer's also sell accessories for wearing your pump, like clips or pouches. I've also heard of wearing spandex shorts and just shoving the pump in there. Since your little guy is so young and you might not be able to find such thing for him, how about just buying a strip of spandex-like fabric and sewing a seam to make a circle just big enough to go around his waist (if you don't sew you can also use fabric glue). His pump would be secure and he/you could easily remove it.
There's a young gal on youtube who has great tips for pumpers and Dexcom users and T1's in general -- she goes by the name Diabetic Danica. Just do a search for her on youtube and there are many short videos that she's made. Very helpful info!

Melissa Heatwole said...

That is so strange that you mention going on a pump break. I just started mine about 2 weeks ago and so far I honestly love it. Its definetly an adjustment and I'm still figuring it out every single day, but I gotta say its so nice to really feel like I have my body back and with out attachments. I have been T1 for 18 years, as I am 30 now and have been on the pump for 15. I always put my cathader in my lower stomach except during pregnancy. And for last year or 2 its been harder and harder to find a location that wasn't getting resistant or that I had enought fat to actually put it in and not hurt like crazy! Most the time I hated changing sites because it meant my levels would sky rocket for a few hours until my body adjusted to it against the resistance. If your thinking about trying a break, honestly I would advise it, it will let you know for sure what you would rather have. I dont see going back to the pump ( which I also have the medtronic like yours) but even though its more work, its so freeing to really feel normal and not have to find locations to hide my pump like I have for years.

los angeles bankruptcy lawyer said...

That is the cutest little insulin checker...it looks like an MP3 player

Sara Brandon said...

I am SO glad to hear that I'm not the only one with infusion set problems!!! I have had doctors tell me that the cannula isn't deep enough to draw blood, etc....and yet I have times when it HURTS so bad like its on a nerve and I pull it out and blood gushes out. WTF?! I started using the medtronic contact-detach sets and have dramatically less pain and bleeding than with the plastic cannulas. I like the CD's because you just pop it in your skin without an inserter and it goes straight in without worrying about angle. And I never feel it. That being said, I'm currently on a "pump break" and it is going okay. I forget my lantus shot every few days in the morning (I have 3 kids under 3...you get my forgetfulness) and its strange not to be able to check the time or have a nightlight always on me! But I needed to be wire-free for my sanity and I will resume my pretty pink pump (just like yours!) in a few months or if I ever get pregnant again in the years to come.

SHUG IN BOOTS {Beth} said...

I am Type 1. Have you lost weight? Maybe try a shorter mm length? I have found that mine do better where I have plenty of fat. Good luck!

Need A Nap2 said...

Anyone can take a pump break but figuring out how much of shots and rounding up and down your carbs to match carb ratios is kind of a pain. I know one T1d kid takes a pump break in the summers b/c of so much swimming. My daughter did not have good control on shots (2 Levemir a day is also a pain), which is one reason she went on the pump. I would let her take a pump break if she really wanted, but I don't really ask. She's in swimming this summer and just takes her pump off during swimming then puts it back on. Her endo said swimming was active enough that she didn't need to worry about insulin during that time, so far so good.

One of the reasons she switched to t:slim was cannula problems with the Medtronic Minimed. Suggestions we were given: 1) ask for a new inserter (those are not meant to last forever and Medtronic would send us a new one) 2) try a different infusion set (we never went this route) 3) change the wipes you're using (for better adhesion, that was also one of our problems).

I was diagnosed after my daughter and I'm on shots, I have good control but am tired of it and looking into a pump. I'm leaning toward Medtronic Enlite if I can get the CGM approved but really like the Animas Ping and Accu-chek's remote features. I like the idea of the OmniPod but know insurance wouldn't cover that one so I'll re-evaluate that option later.

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