My Diabetes, My Decision

I have worn an insulin pump for more than nine years. It hasn’t been the same pump that whole time, of course, but I have worn different types and different brands continuously since first trying one in January of 2002. Wearing an insulin pump made my life a little easier when I moved overseas, when I backpacked through Southeast Asia, and even during those all-day meetings that come up in nearly every business environment. In short, having an insulin pump has been great for me – until recently.

A few months ago I started to get annoyed with my insulin pump. It wasn’t my insulin pump per se, but a series of events (occlusions in the cannula, trouble with the areas of skin I preferred to use for it, etc.). Realizing that my blood glucose levels were consistently higher than normal, I tried to fix what I could by changing where I had it infused subcutaneously, but found that many of the alternative areas I could wear it were incredibly uncomfortable for me. I got frustrated. I got angry. I quit the pump, cold turkey.

I know that I’m not the first person to make this change. When I had heard people tell me they just got to a point where they didn’t want to wear an insulin pump anymore, I always thought to myself “that will never be me!” But here’s the thing – it’s been over a month now and I don’t mind using insulin pens in place of the pump. I’ve heard people call their temporary shifts from using an insulin pump to using pens or syringe a “pump vacation” – I might not go back to a pump any time soon, however, so I’ll call this a “pump sabbatical.”

This shift brings up two things that I’d like to share:

First of all, if you’re on an insulin pump, it’s always a good idea to have insulin pens or vials and syringes as back up. Your health care provider probably recommends this, but I admit that I ignored it. I was lucky during my nine years on a pump and I never once had a problem that caused me to need back up supplies. Watching the news about how an earthquake and tsunami have devastated a country I once lived in made me realize how dangerous it was for me to ignore this safety measure. When I finally decided to stop using a pump, I had to request new prescriptions for insulin pens, which I got – then had to request a prescription for insulin pen needles, too. It was a stressful hassle, but also an avoidable one. And if a natural disaster struck? No matter what type of an insulin program I’m on, I’d want to have those back-up supplies with me.

Secondly, it’s taking me a little bit of time to come to terms with this change that I am actually very happy about. Why? With all the great things going on to advance diabetes management technology these days, I wondered – was I being unappreciative? Was I somehow doing my long-term management a disservice by not keeping up with the latest and greatest insulin delivery devices?  I found my answer in a book called Transitions in Care which was actually written for young adults with diabetes, their parents and their health care team. In it, the authors write:

“Because it is you who lives with and manages your diabetes day-to-day, only you will really know which type of insulin program will suit you best. The decision should be yours – made in consultation with your health care provider.”

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25 Responses to My Diabetes, My Decision

  1. Good for you! I second your thoughts, which you already know. If you need anything, I’m here. It’s my diabetes, too! I happen to enjoy life free of tubes! Woo Hoo for you!

  2. Caroline says:

    Hey Dayle……thanks for posting this! I feel like a pump break is on the horizon for me, at least sometime in the next few years. (It’s weird how you have to time these things with your life, right?) Would love to hear about your experience changing back to MDI, and your advice for others who want to live untethered for a while!

    –Caroline/carobanano

  3. Sheri says:

    I too have an insulin pump started wearing it back in 02 too. I have lost a lot of weight and now all the canula is SO uncomfortable! I can only put it in my lower belly fat that is left. I see my Endo today and you have inspired me to talk to him again about getting off the pump.

  4. You’re exactly right in quoting that passage, Dayle – it is YOUR diabetes, and it’s about finding whatever works best for you, not everyone else. Some of the frustrations you write about are exactly why I took a several month break from my pump last year, though it had nothing to do with my not being happy with the results from it. Just needed a break to let my body rest. And, in doing so, I was able to improve my A1c by a whole percentage point in the five or so months I’d gone back to MDI. I think it’s mostly about the time and care we take in our D-Management, regardless of whether we use a pump or not. Good job for doing what’s best for you, and hope it keeps going well!

  5. Madison says:

    I did this recently too! I was on the pump for about 7(?) years until my pump sites started getting infected ALL THE TIME. My insurance was super awful about wanting me to have the CGM and I never got to take part in that awesome technology. I wish I could, but for now I think I’m on a pump sabbatical too. I love my sweatpants not falling down on one side!

  6. TODD says:

    Good article but I disagree. Having very little body fat and using needles 4-6 times a day sucks. I’m 33 and was diagnosed with type 1 a year ago. As a beginner to this awesome condition I keep pens for back up and pray I never need to use them again. The pump makes things so much easier and living with this so much better. Every situation is different but for me the pump is the best choice. I have better control and my A1C is now 5.3%

    • michelle says:

      I felt the same way about the pump the first year I was on it. Things do change and just be open to those changes.

    • shellie nunnelley says:

      I have ben diebetic for 26 years and been on the pump for 14 years and having a lot of problems with my sites, now im using my arms and it really hurts, Im scared to go back on the shots, I just need some replys, whats best for me?

      • PT says:

        I gave the pump a three week trial and decided it’s not for me. So expensive, so ……..tethering (for lack of better terms) and so unreliable. I was getting several “occlusion” warnings in the three weeks I wore it and had to replace the infusion set several times because they would become detached after a shower or exercise. The trial period did cause me to better understand my body’s insulin needs and reactions – but I’ve decided the “poor man’s pump” (insulin pens) works best for me. Either way, if you have Type I diabetes – you’re a human pin cushion.

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  9. Janice says:

    I have had an insulin pump for four years now and I too am getting tired of always being tied to something. I also hate that it’s more comfortable for me to wear clothing with pockets all the time. I hate the clips used for the pump. I also notice that I’m getting very sensitive at the sites I use. At least when you do injections you can move from stomach,thigh and arms to give each area a break. I think at my next appointment in a few weeks I’m leaving the pump behind.

  10. Angela says:

    I have been an insulin dependent diabetic since I was 11 years old and now 43. In 2004 I became extremely sick with Kidney stones and my doctor said it would be best to put me on the pump. Recently (last 6 months) I have noticed that everytime I put the needle in it becomes infected with 1 to 2 days and then the pump alarm keeps going off saying no delivery. I am so frustrated with it I just want to throw it in the trash. I don’t have any other place to stick it in my stomach because of all the scar tissue. I was wondering what type of insulin they put you on when you stop using the pump.

  11. Peter Hadcock says:

    I am also considering going back to injections. I have been having so many site issues and unpredictable BG readings. When I take a shot to compensate for an unknown high, I don’t have any issues, I was also on a CGM for a while but found the readings were rarely accurate. I had readings on the CGM of 250 when the meter had 80 and readings on the CGM of 60 when the meter had 200. It would also not change after eating at all. I have had diabetes for 40 years and am on my 3rd pump (started in 2000). This decision is not coming lightly by any means

  12. Greg Kerr says:

    I just went off the pump last weekend. For the last 2 1/2 years it just seemed like it was more trouble than it was worth. Even with insurance, the co-pay for supplies is significant. I also and a CGM, and the needle used to insert it always hurt like hell. I’m 55 yrs, 6’1″, 160-65 pounds soaking wet, so the amount of body fat available is premium real estate. I have so much scar tissue from my infusion/CGM insertions that it was getting very difficult to find a place where the insulin would enter my system the way it was supposed to. My last checkup a couple weeks ago, my A1C was 7.5. I plan on keeping a very thorough diary for my injection regimen. And another factor in my decision, is the planned obsolescence of the pumps. I’m not looking forward to buying a new one every three or four years.

  13. Andi Rose says:

    Thank you for your post! I thought I was the only person on the planet happy for a “pump sabbatical.” I have been on a pump for over 10 years and my sites are built up with scar tissue and I was getting infections as well. I got fed up and asked my Dovtor to put me on Lantis and Humalog. It is not as convenient but my sugar has been good and I am enjoying then break from my “external pancreas!” I can’t say it’s forever but I going to snub the best technology for a while!

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  15. janine hummel says:

    I just called a different Endocrinologist and will see her tomorrow. She’s over an hour North of me. BUT if I don’t get results from her, I’m off the pump. It’s been 1.5 years of toying with different basal rates throughout the day; despite arduous work, I bottom out and then the pump suspends and I skyrocket. yesterday went from 42 to 380. I just can’t deal. My “real estate” on my body prevented me from using my belly at all due to Lantus scar tissue. This thing is attached to my arms, and it’s sore as hell. I was actually told to insert it on my inner thigh, to which i replied, “NO. Why don’t YOU do that?” Pump had repeated “No delivery” messages when I was on the quickset and now I’m on the Sure T, which is honestly a pain (in the arm). Hiatus might be absolutely necessary. I’ve never been so unhappy in my lifetime with my disease nor its treatment. I always feel sick, and two friends have said, “The pump is just not working for you…” to which I replied, “You may be absolutely right.” The CGM is off many times, too, and that’s a scary thing. BTW, my bill at Minimed is $2000. I have Medicare in NJ

  16. This message and inquiry comes 4 years after the original posting by the ADA. Can anyone give us an update to how this person is doing? Are they still alive? I’m going to write to the ADA.

  17. Jim Greene says:

    Great story! I’ve been through every pump and infusion set made for over 15 years. What did the pump do for me? 75 pound weight gain, scar tissue in abdomen and arms, which meant constant fiddling with pump settings. Yoyo’s in blood sugar. Last night, my pump died at 9:30 pm. Of course, no backup supplies. Frantically calling the doc on call, driving 30 miles to a 24 hour pharmacy. 300 blood sugar reading on my Dexcom. Today was the dawn of a new life for me! No tether. No bullshit with site issues and yoyo’s blood sugar. Finally….. Peace! I’m cruzing along at 95 blood sugar with only a slight jump after lunch. I’m going on a lengthy vacation, maybe never to return. The pump manufacturers never mention the long term issues with pump therapy. They act as if it’s your problem, not theirs.

  18. Sharon says:

    Very interesting to read people’s views about pump/injections. My daughter has been diabetic for 15 years, she’s now 17 and for the past 5 years been on a pump, however one day, a month ago she just said she’d had enough and wanted to go back to injections….luckily we had our routine check up due and asked to go back to injecting. We chose the following Friday to start the ‘new’ regime and ready to not get much sleep from night testing we feel that the transition has been pretty good and a bit of tweaking with the levemir twice a day we are on the right tracks….it’s now been 2 weeks since we took that huge step and my daughter is much happier…she says she feels free of that feeling, ‘Of walking around constantly with a hospital drip, holding you back’ she has been in hospital and was attached to a drip, so she knows what she’s talking about. I can only say that we gave the pump a good try of 5 years but in the end with rising hbA1c levels and bleeding at cannula sites, 3 pumps during that time, I think we lost the faith in that ‘wonder’ gadget. Anyway hopefully when she has her next check up, we will see an improvement to her hb levels, for now though the pump has been safely tucked back into its box! It just wasn’t working for us.

    • Jim Greene says:

      Good decision. Especially for young active people. The infusion set technology just plain sucks and leaves serious scar tissue which affects absorption of medication. Also, with a pump, most people I know balloon in weight. Too convenient to bolus and correction bolus throughout the day. Flex pen is far more reliable and no big deal. The tether is obtrusive, especially sleeping.

  19. I have been diabetic since I was six years old and went on insulin pumps in 1984 when they first came out… I’ve primarily used Medtronic pumps and also have had a Dexcom. I’ve been having scar tissue issues for some time as well as some issues with insulin absorbency. I have also been on the CGM since it first came out as I have diabetes unawareness. I have been contemplating either going back to injections (makes me a bit nervous as it has been so long) or possibly checking out the pancreas transplant. (that has its own list of issues to deal with). What I want to know is where do those that are on injections, give yourselves the shots? I’m pretty thin. Also is there anyone who has gone through with the pancreas transplant and if so, could I talk with you? Thanks in advance for any information.

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