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Guest Post: Pump Vacations?

In the midst of a very brief pump vacation myself (more on that later), Moira McCarthy's guest post today really resonated for me.  I know if I told my mother (or my husband, for that matter) that I wanted to take a break from pumping, they'd read "burnout" in that admission.  But sometimes deciding to take a break from certain diabetes things is the opposite of burnout - instead, it can be a sign that a PWD is trying to regain control, bit by bit.  

Thanks for guest posting today, Moira.  Your perspective is invaluable.

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The lovely Moira.  :)My college-aged daughter, who has had diabetes since Sesame Street was still a viable TV option, came at me with some big news the other day. She was going to go on shots. Shots, the evil, ruin-my-life treatment plan that I spent the first year of her diagnosis hating, fearing, chasing lows on and basically, feeling like it owned my life.
 
Now, let me say up front: I get it now. Shots have changed. There’s Lantus, for one (I think of NPH as the evil empire of diabetes, sorry), there are cool pens you can tuck away; there are all kinds of plans that make it a snap (well a snap in our D world. The rest of the world would freak out). But I had to think to myself; why the H*** would anyone choose shots over a pump?
 
Here is where mommy’s ego enters. My daughter was one of the very first young children to go on a pump in the Boston area. I did it with the help of on line friends (Thank you Ellen from kidsrpumping). I did it because it just seemed right to me. And okay, I did it so I could be that ultimate superhero: the Champion Diabetes Mom (CDM from here on it). CDM finds the newest and the best. CDM knows not only every type of insulin on the market and their peak patterns, but she can create a few fun anagrams from their names (Hey – who said diabetes can’t be fun?) I was that mom. I want to still be that mom.
 
My daughter was among the very first kids in America to use a CGM (she even used that horrid big one until the smaller one came out). No, she’s not on it now but that’s another discussion (see guest post on teens and freedom at DiabetesMine.com. Ha, ha, ha. And yes, that was a fake laugh). So for the most part, for the going on 14 year’s we’ve been at this, we’ve been trail blazers.
 
But my daughter is in college now. I need to preface this with good news. Despite my endless worries and almost insane fear of the unknown, she came home with a good GPA and a great A1c. Well, not great, but down three full points. Who does that their first semester of college? There were no ER visits, no fearful calls from friends. Sure, she had a few bad days but for the most part, she aced her first semester of majoring in Communications, politics and life with diabetes without the CDM over her shoulder.
 
So just before her endo visit she breaks it to me: she wants shots. She’s tired, she says, of the pump being attached to her (in fairness, other than when she was in the water during a swim meet, in the shower or in the time she was in denial over diabetes, it’s been connected to her body for 12 years. That’s a long time). This has nothing to do with tubing and everything to do with being connected to a disease. A “pump break” as she put it would give her a chance to breath, do something different and just take a break from LOOKINg at her disease 24/7.
 
I’m proud to say CDM kept a straight face. I didn’t react. I tried to just say “that’s cool.” But I suspect I did it in the same way I thought I was being cool way back when a bg of 450 and some ketones would completely freak me out. “No, honey, it will be fine,” my lips would read. Years later in counseling she confessed my eyes said “OMG you’re going to die and you’re going to die now.” Some fake outs take practice.
 
But here’s an interesting thought. I know everything there is to know about the pump. I can function it. I know basals. I was always the one who helped tweak it. When she steps into shot world this week, I won’t know squat. I have to wonder: is this a plan? Is the best thing for my awesome daughter for CDM to take a step back and let her learn to stand on her own? I know there is going to come a time when she goes back on the pump again. I need to know, too, there is going to come a time when she wants my input, advice and help on diabetes. But smart girl she has always been and always will be, she must know in her heart that CDM has to cease to exist. She’s moving toward being that adult PWD. I need to embrace it. And train my eyes to say otherwise.

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As parents or caregivers of people with diabetes (CoPWD), do you want to keep your kid pumping/CGMing/technology'ing as much as possible because you think it's for the best?  As PWDs (or CWDs), do you sometimes need a "less is more" approach to diabetes management?

Comments

I'm a former child with diabetes, and I got the pump nine years ago when I was sixteen. But the thirteen years before that, my mother knew it all. Now, when it comes to diabetes, she knows that there are basals, and that there are boluses, but that's about it. When I figure out corrections, and active insulin, and other intricacies of the pump, she doesn't understand it. I'm independent of it now, but she still compares this diabetes to the days of lente & regular diabetes, because that's all she knew. And while I like being independent, it can be frustrating when she doesn't "get it." But on the good days, I don't know if I want her to know either.

Moira, Congrats to your daughter on getting through her first semester healthy on the diabetes front. That's more than I can say.

Moira...My 7 year old just took a "break from pumping." It's been a month. I was a wreck...things are good now, she's happier and her numbers are actually better!

I am an adult with Type 1 and a mom of a child with a chronic illness.

I'm glad that you are supportive of your daughter's descision (even if your eyes scream YOU'RE DOING WHAT!?) :)

From my own perspective it is so important to know I have real support when I want to try new things to manage my diabetes (on the same token to not get bombarded with every new "cure" thrown out on the news that week). I have to understand my disease and find out what works for me and if I can find someone to walk that journey quietly with me all the better. I feel sometimes changing it up helps with burnout.

I hope that I can be a support for my child as he grows older and begins to take steps to manage his illness on his own. (I'll start working on my eyes now.) :)

Thank you for sharing your story.

I've been on a pump for almost 11 years, and I went off the pump for 4 months. I ended up finding out that shots were physically painful for me now, and so I decided I didn't want to do it longer than that. I tried doing the tethered approach, but I still seemed to suffer from high blood sugars after I bolused. I still think that it's a good option for people who need a break. I may go on another break eventually, but right now, I'm OK with the pump.

Moira--

Congrats to your daughter for lowering her A1C her first semester in college. I'm in my last semester of undergrad... and while I have spent the past year taking serious business control of my diabetes, lowering my A1C was definitely not on my agenda my first semester of school/independence. Go her!

I've been thinking about a break from pumping, too. I went on the pump to break free of the NPH demons as well, but I'm definitely curious about the newer MDI options out there. I started wearing a CGM about 5 mo ago, and the extra device (that makes it hard to keep my pants pulled up and takes up way too much space on my body... but has made a huge difference in my quality of life) has definitely made me more aware of the pump/having SO MUCH STUFF ATTACHED. Keep us posted on how it goes!

Beautifully written!

My 17 year old had been pumping for 4 years.(Diagnosed 5 years) We ordered his new PING, he wore it for, oh maybe 2 days before deciding he needed a break. That was back in September. His numbers have been great since going back on MDI. His biggest problem after 4 years of pumping was absorption issues. His lack of what I call 'viable real estate'; he is very lean and didn't/wouldn't/couldn't rotate his sites around to a lot of areas. He doesn't mind being back on MDI and I am liking his numbers as well!

I have been a pumper for the last five...six years? Anyway every year I attend a twenty four hour martial arts camp. It is a lot of work and a lot of fun.

Anyway about four years ago I was sparring and my opponent kicked me right in the pump. While my pump was fine (note: I am glad to know my pump is water proof and martial arts proof) I just imagined it breaking like one of the boards we like to smash apart with our hands and feet. Mind you the pump would be one expensive board. Since the camp is twenty four hours and the drive to and from the camps adds another three hours I decided I would use Lantus when I go to camp. I begin a day or so before camp on the Lantus and ween off it the day after camp returning to the pump. I have to say the freedom from the pump for those few days is wonderful. No little companion attached to me all day saying “hey give me attending.” Lately he has not wanted so much attention thanks to “Dex” his new CGM friend on my belt (see side note at end). No tubing to snag and no late night trips to groggily get up to fill an empty cartridge. While the "break from pumping" is nice, in the end, I know how much simpler my pump has made my life and so a day or so after camp it goes back on.

What is my point? Well I can see the lure of wanting to go off the pump for a bit. Especially entering college in a time of making new friends and having new experiences, this change to shots is just one more new experience to be had for your daughter, I am sure.

Side note: As a male I wear my pump in a cell phone case on my belt (much cheaper to replace than the ones the pump company sells). Next to it is “Dex” my CGM. On the other side is my cell phone. Then there are the times we take long day trips and I strap on my case with the ping meter, lancets, lancing device, test strips, and glucose tabs. Let me tell you sitting down in narrow theater seats or getting situated in the car takes talent and work on my part. Anyone else feel like Batman with all their diabetes gear? Better yet I am Diabetesman with his AMAZING diabetes utility belt!!!

I was scared to death just thinking about getting off the pump. Then I did it and since then have maintained 5% a1c's instead of 6.5% and up. As a young person a few years ago who was dating my now husband, I just didn't want to worry about the pump that was attached to me. I also got tired of all pump issues like bent canulas. I think fear is the simple factor here. I was fearful of nothing though because I've realized I love the simple and hassle free approach. I think the more we are able to "take away" and still have good diabetes management, the better off we are. I resent anyone telling anyone else a pump is better. Compare my A1c with those who are on pumps and you'll know the pump doesn't equal better blood sugar management. It's a wonderful tool we have but, syringes are great too. After all, they get the insulin in where it needs to be. Simple, worryfree, and fast. It's all about personal preference, I'd say. And I give props to anyone who manages great blood sugars with a pump or without one.

First, Moira, congrats on your daughter who's doing so well in the early college days! You must be very proud! As a former CWD who's now grown up (or so they say), I've been pumping for 10 years and last summer took a 5-month pump hiatus to give myself a break. The mental and physical, and that actually helped me lower my A1c pretty significantly. But love the pump and went back to it in the fall. Anyhow, she'll do great and so will you in being a supportive CDM - I know from experience, in watching my own Type 1 mom do all my D-Management in the early years after my age 5 diagnosis and then transition it all to me in my teens. Couldn't have asked for more, and still consider her a CDM, regardless of her level of involvement in my daily routine nowadays. Good luck to you on that end!

What an eye-opening perspective that I will take along this journey with me. I never would ever think Joe (my seven year old - pumping since he was three) would want a pump break...but after reading the 9 comments above and Moira's insightful post I will maintain a more open mind to Joe's diabetes management. Thank You for this Guest Post.

I think breaks from pumping are a good strategy for long-term health. Last year I took a 4-month "vacation" after 10 years pumping. It wasn't about burnout or needing a break from diabetes--actually I really needed to step up my self-care after years of surviving as a workaholic, stressed-out pumper. Some of my goals for that summer were healing scar tissue, doing yoga and swimming, improving body awareness/acceptance, simplifying my diet, regaining my sex life, and even wearing nicer summer clothes. Also--a totally different issue but very important to me--I wanted to teach myself how to maintain decent control without being tied to an expensive machine that so many PWDs worldwide can't afford. I'm back on the pump now, but I feel much more like it's a choice, and that makes things a lot healthier for me. Also my site absorption problems fixed themselves beautifully. During the vacation, my A1Cs and average BGs were about the same. I was less stable and definitely had more lows, but overall I think it was well worth it.

Sounds like your daughter's doing really well--congratulations to her on her first semester!

I think pump breaks are a great idea. They can help you learn more about your insulin needs pattern and they remove any variable in control that could be attributed to infusion site problems. I did that regularly during college (back in the early 90s). After a while, the hassle wasn't worth it to me and I would go back to pumping. But it's sort of like being a "real boy" (or girl in my case) "without strings" (ala Pinnochio). Seriously having your body as just your body and nothing stuck on it is a really nice change sometimes.

And there is a sort of mental relief to have an injection that can keep you going for the next 12 hours, at least for basal. There is a bit of attention that has to be paid to making sure the pump is operating properly, and you know that the fast-acting insulin is only going to keep you going for a couple hours should something go wrong. It's like a little nagging in your mind that never goes away. But then I'm sure, as a mother of a child with t1, you know that well.

-Anne

I have had diabetes for 12 years, since I was 11. And I have been on a pump for the past 10 years. Pumping that is, until about 4 months ago. I felt similar to your daughter about feeling so attached. I had spent the past year and a half being very obsessive about my basals, BG checks, and CGMS and it did cross the line into over-obsessive. Suddenly, after actually LEAVING my pump in the Khol's dressing room, I realized I need to be detached and take a step BACK from my diabetes control. Not that I did not care anymore, but I needed a break. My A1c only went up to 6.6 from 6.1 and I am now happily pumping again. For my mental health I needed to step away and relax and for me that meant no pump. I am very very glad I did it. :)

Sometimes I take pump breaks, forget to bolus a few times and run back to my pump. It makes me appreciate if more. And this way you're very familiar if you are ever forced back on shots!

You're a great Mom! I'm sure your daughter will realize the advantages and DISadvantages of the pump, once she's off it. I've had Type I for 38 years now, and went to college on NPH and Regular insulin with no BG meters. They hadn't been invented yet! I took shots for 35 years, and have now pumped for 4. I actually use the pump more because I love the CGM than because I love the pump. I had better A1C's on shots (6.0 - 6.5) than on the pump (6.7 - 6.9) but I don't get lows as I did with the shots. I have little 'body fat real estate,' so I have site issues pretty frequently. I never had absorption issues with shots. However, I live alone, so the fact that I have a CGM, and can set basal rates variable during the night is another plus. Good luck to your daughter, and thanks for being such a great Mom to a PWD!

Great article. I have had diabetes for 26 years now diagnosed at 6 and been on the pump for 10 years now...I think a pump break every now and then is needed while I get better control on the pump the liberation of not being connected to a machine 24/7 is just as important!

I was 30 when I was diagnosed (just last year!), but my mother is pretty involved in my life... and a nurse... and sort of controlling in a she-only-wants-to-help sort of way. She admitted to me after diagnosis that her instincts told her to take me to her home, make sure my blood sugar was OK, and take care of me.

So, I think it's more than the CDM thing... Because my mom never WAS a CDM, but I can see in her eyes all the things you talk about in this post. It's not jsut that you're a CDM, it's that you're a parent whose every instinct is to protect your child from harm. What a powerful force, and what an effort it must be to let a young PWD take charge and make choices you wouldn't! I am continually amazed by parents of children with D... You're heroes.

On the topic of meing a PWD and thinking about bare bones... boy, I get it. For me, the gadgets just work better... But it IS more of a constant reminder than keeping insulin pens in your purse or testing your BG every few hours (rather than being hooked to the pump or CGM). But the price is worth it... Not only is my control better and more steady (fewer lows!), but the ritual of pushing buttons before a meal is so much easier than the ritual of an injection!

Love reading this! My daughter is currently on a pump break. She was dxd at 14 months, pumping at 2.5 yrs, dex. 9/09 and is now 8 years old! She is beyond tired of the set changes, kids asking "what is that on your arm/leg", and over all... wearing of her pump or dex. Started out over Christmas Break to have a pump break but now has carried over to the start of 2011. I am not sure how long her pump break will last nor does she. The most important thing is that she is still receiving insulin that her body needs via shots. A major bonus is that her emotional outlook on her diabetes has improved! As mom I am actually enjoying the break more than I would have thought!

First off, let me congratulate your daughter for taking firm steps into adulthood, which means making her own decisions.
I love my pump because I don't have to remember whether I have insulin and a syringe in my purse when I want to go out impromptu with friends.
BUT, each to his or her own, and your daughter will figure out what suits her best.
Meanwhile, don't bite your fingernails off -- be proud!

In answer to the question. No. I want both my kids to do what they want/need to do. I cannot choose shots over pumping; they need to make that choice. I have my feelings but to utilze my friend Moira's outlook-----you'd never see it my eyes.

Moira -

Maybe your daughter is working her way toward being her own champion - a CDP - Champion Diabetes Patient. Figuring out what she needs physically AND emotionally. That can't be a bad thing. Congrats to her on a great first semester - that's amazing and I am very, very impressed.

:) Nicole

I choose to go on the pump my third year of college - part of it was wanting to do the diabetes thing all on my own, part of it was wanting to get my numbers more under control, and part was rebellion against my parents (who were anti-pump/anti-change).

About 5 years ago, I contracted a staph infection in my butt (where I had an infusion set). I then got one on the other side the next week. To help aid in the healing process, I talked to my endo who agreed to let me go back to MDI. I have to say the 6 weeks I was off the pump, made me appreciate it more. It also helped when I had something going on last spring (and spent 3 wks with +150% basal and numbers still in the 400+ range) when I switched to MDI in order to straighten out my dosing. It gave me the flexibility to quickly and swiftly change my "basal". Again, it was so nice to go back to the pump (especially being a teacher... shots are not easy to squish in between classes).

Your daughter will figure out what best works with her lifestyle and what is best for her. Each of us finds that out in our own time.

very interesting topic, for sure, Moira. thanks for sharing this. my 8 year old has been pumping since she was 3...and i, too, shudder when i think of the early times with NPH...yikes...it was a nightmare to say the least. i admit, at times i wonder how she would do on shots now...no mini computer tethered to her rear-end, exclaiming to the world: HEY! LOOK AT THIS! IS IT A CELL PHONE? A BEEPER? (a beeper?...i mean who uses a beeper anymore...anyway.) what i'm trying to say here is...yes, there would be nothing at a glance, to say she's different from the next kid. and, that might be nice.

Good for her! I've been on MDI's for the past 4 years and I've thought about going to a pump. I've heard all the awesomenesses (probably not a word) of being on a pump and that you don't have to give yourselves shots all the time... As for me... I don't know if I want to be "hooked up" to something 24/7. However I would like to take a look at CGM's this year. We'll see.

Best of luck to your daughter and your sanity! :-)

Happy BG's to all,

Lindsey

I wore a pump for 13.5 years, and just recently decided to go on an extended pump break. And as much as I thought I loved the pump, I am thankful to not have a visible sign of my diabetes anymore. And honestly, it's made me much more accountable for my diabetes care - I can't depend on the pump to log my sugars and boluses - I have to do it myself. And I don't get a reminder a couple hours after a bolus to re-check...I have to do it on my own. And while sometimes it has been scary, and I've missed my Lantus shot a time or two, it overall has made me think about my diabetes more, and has forced me to pay attention. Which is exactly what I needed.

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