Tuesday, July 23, 2013

How's the Pump?

How's the pump?  How are you liking your new...thing?  Didn't you get a new monitor or something?  How's that going?

I get asked this a lot.  Mostly because I put things on Facebook like "My new pump came today!  Woot!"

And so, how's the pump?  How am I liking my new thingamajig?

I want to say: It's awesome!  Best decision I ever made!  I should have done this YEARS AGO!!

What I really say, and what I really mean:  Um.  OK. I guess?

I don't know what I expected.  I knew it wasn't going to cure me.  But  I expected to love it.  I expected more convenience.  I expected more control.

What I get is - erratic numbers, a crap load of site changes, (the site changes!  Oh the magnitude of site changes!) a lot of tubing and all of a sudden my wardrobe choices become about where I can hide this thing instead of what I like and what looks good.  Also, this disease can't be good for the environment.  The amount of crap I throw away every 3 days is astonishing.

I don't like cargo shorts very much.  I hate things with big pockets, and yet, that seems to be the direction I have to go...unless I stick it in my bra, which, frankly, is where it ends up most of the time.  Please don't tell me to sew stuff, I can't do it and I will end up in tears.  Big, heaving sobs.  It won't be pretty.

It is not more convenient.  Being attached is not fun.  It catches on things.  It beeps at odd times.  (Well, I've turned it to vibrate, so there's that.) It keeps me awake at night. I waste a lot of insulin. A bottle of insulin used to easily last me the month I was supposed to have it open.  Now, not so much.

And also, stuff like this happens.
These two things are supposed to be attached. I don't know how long it was broken before I noticed, but my bg was over 300. Also, this held over 100 units of insulin in it that I couldn't use anymore.  Also, my life kind of depends on things STAYING CONNECTED.

You see the badness?  I will tell you that tech support FREAKED OUT and sent me lots of new cartridges and a return label to send this back, plus send them back all cartridges from the same lot, and then they called the day the new cartridges arrived (which they had overnighted) to ask when I could send this back, because they were very very anxious to look at it.  Apparently this is not supposed to happen.

(Also, at my next site change, before throwing away the used cartridge, I tried to make this happen again. I twisted.  I pulled.  I stomped on it, I did everything I could short of giving it to my dog to chew on it, and nothing.  That sucker would not break, and I am still scratching my head as to why it did).

You see, when I was on the shots, and I went high, I would give myself....a shot.  I knew the insulin went into my body because I put it there.  And then, if I didn't come down, I knew it was something in my body.  Dehydration, stress, some weird hormone thing, something.  But I knew the insulin had made it in there because I could SEE the needle.  It once had liquid in it, and now it doesn't.  That liquid went into my body because I injected it there.

Now, if I go high (which I seem to be doing a lot more often, BTW), I push some buttons.  And if I don't come down, I don't know what happened.  It could be any number of the body issues above, PLUS it could be kinked tubing, a failed battery, something weird with the cannula, poor site absorption, or some failure somewhere that I didn't know existed.  In short, it could be the machine.  And as I battle these highs, I don't know if it's the machine or me.  And that is...DRIVING..ME..CRAZY.

I mean, there are enough unknowns.  Adding more does not help my mental health.

Yes, I disconnect and give a test bolus.  Yes, sometimes I end up doing a shot.  Yes, sometimes I do another freaking site change.  And yes, all of this is.....super inconvenient.

There are definitely some pros. It is nice to know that if I forget something, I always have my insulin.  That is good.  It is nice to not have to do the shots, button pushing is more fun and causes fewer stares.  And the extended bolus is awesome. Plus being able to bolus for 5 grams?  Sweet.

I know (hope!) that most of these issues will be resolved as I get more used to this.  I should get better at estimating the amount to fill the cartridge so it's almost empty by the time I have to change it, which will reduce the waste.  I should get used to being attached to this thing. It doesn't help that I got my first real "sick day" shortly after I started pumping, and I spent the weekend in bed trying out the option of temp basals and sleeping.  I couldn't get below 200 to save my life.

Mostly, I got the pump because I wanted better numbers.  I wanted better control.  I can put up with the being attached and the tubing and the multiple site changes if it increases my blood sugar control and/or drops my A1C.  So far, not so much.  In fact, I would definitely say the control was better on the shots, and even though I have only had one low so far on the pump, it's probably because I spend 99% of my time above 150.  And my nights are often above 200 most of the time.

This probably (definitely) means I don't have my levels set right, and need to up my amounts again.  I meet with the CDE again this week.  We've already upped them once since setting the initial amount, and that pretty much did nothing.  It might as well not have happened.  And I know it shouldn't, but upping the levels makes me feel like some kind of "diabetes failure" as if I should only need a certain number of units a day or else clearly I am doing things wrong.  But higher blood sugars make me feel far worse than higher levels do, so up them I will.

Everybody else seems to really like the pump.  So I'm going to stick with it for a while longer.  It's only been 2 weeks, after all. And I know I'm often averse to new things.  When I switched to an iphone from a droid, I fully expected to love it, only to find on that first day I hated it so much I wanted to throw it out my car window and drive over it. Now, of course, that might not be the best example, because I'm still not a fan of the iphone, and it's been over a year.

So...how do I like the pump?  OK, I guess.  Give me a time. Today is not the day to ask me as I soared over 300 post breakfast eating a meal I eat very frequently.  Was it me or the machine?  Who knows?


  1. That is crazy crazy H! I know what you mean about feeling like a failure. In spades. You (or your body) needs what it needs and it's a constant game of catch-up sometimes. I hope the pump works out for you, I know you've had a really rough time of this.

  2. Ok, I have a few thoughts I just want to throw out there.

    1) When I first transitioned from shot to pump it was WAY hectic. I saw a huge jump (in a bad way) in control just from the transition alone. But it settled down after a bit (months) as I worked my way through the steep and unfriendly learning curve.

    2) I think it might a good exercise to go through the reasons you wanted to start pumping. For me, I couldn't solve the dawn phenomenon thing on shots (not without being willing to wake up at 3AM and take a shot). That makes my decision to pump pretty easy.

    The fact that I can deliver more at 3AM without waking up is a nice thing for me. I also enjoy the fact that I can turn my insulin down before going to play basketball and I can enjoy pretty good numbers without having to eat a million things.

    I also enjoy that it does the math for me, and tracks active insulin. I'd get into a boatload of trouble in stacking my doses if it didn't.

    But in the end, a pump is just another tool to deliver insulin. You just have to decide if it's the right tool for you (and it's hard not to be swayed by how fancy of a tool it is).

    1. Thanks, Scott. Good to know others have had a rough transition as well. I have nighttime issues too, and I was hoping the pump would fix them. I am not sure if it's Smogyi or dawn phenom, and sometimes I think it's one and sometimes the other. Consistency, thy name is not diabetes.

      Also, it really helps on road trips to dose in the car. SO much easier. And I should clarify, dosing at meals IS more convenient. It's the overall inconvenience I am whining about.

      It still might fix the night time thing, as we tweak things. I do enjoy it doing the math for me, I think the IOB feature is nice, but it doesn't help me too much. I mean, if I'm eating 30 grams, I'm eating 30 grams. So what if I ate some 2 hours ago? I still need the insulin. I think there is probably something I am not getting here, something I don't fully understand. Why can't I dose again even if I still have some IOB?

      One night it wouldn't let me bolus when I was in the 160's (and rising) because I still had some IOB, and so I had to set my alarm to wake up in 2 hours and bolus, and yes, I was well over 250 by then. There's got to be a way to override that, but at 11:00, I wasn't dealing with it.

  3. I'm so hoping it works out well for you over the longer term.

    Different type of malfunction re wardrobes here, but when I lost my colon to Crohn's my GP dr threw out some casual mention of how now I was going to have to throw out my wardrobe, wasn't I.

    Nuh uh!

    Four years later, she was right: loose tunics it is. It's just easier not to worry about it. (With thanks to the company that put machine washable silk ones at $20 closeout. They helped take the sting out of it.)

    All of which is beside the point: my prayers for your health and for the success of the researchers out there.