Tuesday, June 17, 2014

Device phobia

More is not always better.

Technology helps our lives, except when it doesn’t.

When I quit the insulin pump, I had no idea how good it could be. I had no idea how bad the insulin pump made my life with diabetes until it was gone. What started as an intentional few weeks break turned into permanency. The biggest take-away for me that I didn’t expect was just how EASY managing diabetes could be. The insulin pump complicated my life in ways I was never able to see from where I was standing. Sure, diabetes is still a fickle bitch most of the time and I hate it more than I hate anything that could exist on this planet. I curse it and question “why me?” more often than I care to admit but my life sans pump is glorious compared to before.

The idea of the insulin pump intrigued me. I was on injections for 5 years before I went to the pump. It was so customizable and would adapt seamlessly into my lifestyle of athletics. I could set everything to suit me best, how could that not be a step in the right direction? It was a step backwards.

It wasn’t until I walked away that I was able to see the complications of it. Clogged tubing. Kinked cannulas. Bubbles. Cooked insulin. Infected infusion sites. Scar tissue. Poor absorption. Or even a combination of any of those. Accidentally coming unclipped in the middle of the night and waking up to flu-like symptoms? Not to be forgotten in the mix are problems with taking too much/too little insulin. Or miscounting carbs etc. It was much harder to differentiate.

NONE of these things were easy to correct. Each and every one of these problems resulted in hours of trial and error trying to diagnose the problem in the system. Sometimes it was easy but most of the time it was a giant maze of confusion. I found highs on the pump were the worst I’ve ever had. Often I would have to give massive injections of 8-10units of insulin and wait countless hours. Now? I don’t take much more than 10 units of rapid TOTAL for the day. 10 units would send me to the hospital. I found myself instinctually going for the needle each time to correct the high. I stopped using the pump because I didn’t trust it one bit.

I found myself dealing with one or many of these problems on an almost weekly basis. It was never HUMAN ERROR and it was always a malfunction somewhere in the pump system. That thought alone was enough to piss me right the fuck off. What was I doing? This device made life so much more difficult. I’m not even talking about the physical discomfort of being attached to a massive pager-like unit by a tube to my body 24/7. That alone, was enough to make me want to tear my own skin off. I’m not even bringing up the added pain in the ass of a CGM either (Continuous Glucose Monitor) which is a separate precarious thing sticking out of my body and sometimes a separate device to haul around. 

Finding yourself in another city, a few hours drive from home and discovering a pump malfunction? Failing to have a back-up medical cabinet on your person at all times? Hell. Utter Hell. Result? Feeling sick, thick and heavy while trying to maneuver through the “movements” of deciphering the problems. 

Could it be the insulin? I don’t know. How do we find out? Try new insulin. Could it be the site? Don’t know. How do we find out? Replace it. Could it be scar tissue? I don’t know. How do we find out? New site. Each problem resulting in HOURS of waiting and carefully monitoring. The questions were endless. A terrible high could take 6 hours to come down.

I DON’T HAVE TIME FOR THAT SHIT!

This is all happening around LIFE. I can’t just crawl into bed and monitor my sick self because I feel so ill I can’t function. What if I’m at work? What if I’m on vacation? What if I’m doing anything a normal person is doing?

 
Needle and insulin.
I recently forgot my insulin pen at home so I switched over to this for the time being. I just haven't got around to putting the pen back in my purse.

My only problem now is sometimes forgetting it or cooking it or ….. well that’s about it.  I go buy a few syringes and a bottle (at any pharmacy) to get me through the day if I forget it ANYWHERE. I toss it if I’ve left it in a hot car for even a couple hours. 

My only problems now are usually human error. Forget to bolus. Take too little, take too much, miscount carbs, exercise too hard or too little. Perhaps stress or hormones will have a small effect but more often than not it’s just my error in judgement. The best part? Any problems I have now are fixable within the hour and require far less trouble. I can count on one hand how many times my BG's have reached the +20's mmol/l (360+mg/dl) since going back to injections almost 2 years ago. On the pump, it was a weekly occurrence.

My 5 year stint with the insulin pump made me “device-phobic”. I’ve now gone the complete other direction. I get anxiety when I think about it. I still get the heebie jeebies at the thought of a pump or a cgm or anything for that matter. I’m done but y’know what? I’ve never been happier. I’ve never found managing diabetes this easy and so not in your face. EVEN with athletics. Simplicity is where it’s at for me. My A1C dropped. My weight dropped. My stress and anxiety dro…. Well – no -  that’s always going to be an issue. I have far less things to write about because life - with diabetes - is less complicated.

Kudos to you guys for making it work but have you ever wondered if LESS is maybe MORE? If we’ve created a monster with technology? If this technology has maybe, possibly complicated things too much?

It’s back to the basics for me and this is where I will stay.

The Artificial Pancreas Project? You can have it. I don’t want anything to do with it.
Yes, I'd rather stab myself with needles. I see the APP as an interesting thing but extremely complicated and not worth it. It defeats the purpose of helpful. The CGMs we have available are highly inaccurate. I don't want machines making life or death decisions based on a blood glucose number that may or may not be accurate.

I wish, truly, that they would spend research money on finding a cure rather than investing billions into more intrusive, expensive ways to "manage" diabetes.
 

 

Please keep in mind these are MY opinions only and YOUR DIABETES MAY VARY! I understand that. I understand there are people that love the pumps and the CGMS and couldn’t live without them. I tried to be one of them. I tried to make it work for 5 stinking years. These are my personal accounts only.

18 comments:

  1. Scully, I'm glad that 1) You found something that works for you, and 2) You're sticking with it. We've all got to do what works for us. I'm excited about artificial pancreas technology, but I would definitely trade it for a cure any day.

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    1. I think the artificial pancreas, if it ever became available to the general population, would drive me to insanity. It intrigues me but it doesn't at the same time.

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  2. I am also on MDI and would love to learn more about how you adjust for heavy exercise. Trial and error, I'm guessing? (I know, stupid question :)

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    1. I think I learned a lot from being on the pump and attempting to use the temp basal patterns for exercise. Yeah most of it is trial and error but a lot of it is just a different mindset. I go into workouts with the idea that I want to fuel the exercise and not the insulin needs. Obviously it doesn't always work that way.

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  3. I went on a pump vacation for two weeks a couple weeks ago and it was glorious. GLORIOUS. I felt. . .more attractive? Without the pump attached.

    It was wonderful using the freaking bathroom without getting tangled in a tube.

    But I ran high the entire time. I'd love to figure out why, because I'm kind of thinking of a perma-vacation.

    I do love my CGM, though, so I'd probably keep that.

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    1. Pre-pump I didn't know about split lantus doses. Since splitting my Lantus twice a day it made a huge difference this time. Or perhaps my body changed, I really don't know! It did take me a good 2-4 weeks to get the timing and units down after leaving the pump.

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  4. I absolutely support you even though we have made different choices about our D management. Your posts on this topic ALWAYS make me stop and think and consider whether I am really on the track I want to be on. And that's pure gold I don't get anywhere else. Thanks.

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    1. Thank you for the comment.
      I gave the pump an honest to goodness 5-year try. I wanted it to work but in the end I learned more about myself than I ever thought possible.

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  5. Sometimes I look back at the days before I used any sort of "devices" and reflect on how freeing and easy it seemed. All these devices (pump, then CGM, then who knows what?) add incrementally, and the "one little thing" seems like no big deal - but eventually the "ten little things" do end up to be quite big... and I'm not so certain I want to go there. But we don't realize the burden they bring until we shed those things -- even if for just a few minutes after stepping out of the shower.

    I hear you about the Artificial Pancreas thing. As an analytically-minded guy, I'm fascinated by it: the mathematical algorithms, the physical form, the social/community response, and so on. But personally, I find it hard to get too excited over a system that still requires the site changes, the itchiness, the scarring, the worries of boiled insulin and the pain-in-the-ass-of-it-all of swimming.

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    1. I think that's what it was with me. "just another device". But for me... I am a highly sensitive person so "just another device" was huge and overly burdensome. I found myself unable to avoid 24/7 thoughts about the pump attached to me. It snuck it's way into every single aspect of my life. I got overwhelmed easily and literally just freaked the fuck out. I still think about it constantly but it doesn't feel like the BURDEN it used to be.

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  6. I'm glad you found something that works for you.

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  7. Amen!

    I've said this before, but I just don't think all those micro-adjustments I was able to do with a pump ever made much difference. Basal rate of .675/hour or .65/hour? How the fuck should I know? And it was almost guaranteed that whatever was "just right" one day wouldn't work the same way the next. The main thing all those pump settings did was take up time and mental energy and make me feel "more diabetic" than shots ever do.

    And I'm totally with you on the artificial pancreas program. Gotta love how the publicity photos never show a glimpse of the TWO pumps and infusion sites those kids have on them, or any of the other gadgetry necessary to make the whole (admittedly interesting, but, to me, completely unappealing) setup work!

    Fund a fucking CURE, JDRF et al!!!! (Sorry for soapboxing your comments, Scully! ;-))

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    1. Hijack my comments anytime Heather!!
      In fact I love what you wrote. That's exactly what I came to understand and learn over time. The teenie tiny variations in bolus amounts make zero fucks of a difference (WITH ME). I didn't need such small differences.
      I didn't need special basal patterns in fact my body seems to do just fine on 9units of Lantus twice a day. Sometimes I adjust it to 7 or 8 or 10. It all depends.

      Shots are tiny and discrete. They are MORE discrete than pulling a pump out. I get FAR less reactions to a wee pen than I ever did to the pump. Nobody questions the pen, everybody questioned the big ass pump with tubing.

      I've never felt less diabetic than I do with needles.

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  8. I get the problems with the tubing and the annoying highs caused by equipment malfunction. And it took me months to get over it. And it's worse, because when everything is running smoothly you don't think about the pump, but when it's broken you are high and angry and then get to bitch about it.

    However, after doing a bit more of long distance cycling (and I promise solemnly to update the blog eventually), I would not want to miss the advantages of an adjustable temporary basal rate. At all. I'd be willing to go with the pump dispensing basal and using a pen for my bolusing (because yes, there is no way you can mess that up). But I want that time-flexibility and not having to think 24 hours ahead about the upcoming exercise.

    And I accept that this does not apply to all exercise and all diets - but I need my lowered basal rates to release magic! (I mean.. glycogen). For power! And stuff.

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    1. those are all the things I thought the pump would help me with but after years of trial and error I couldn't make it work. All those basal rates just fucked shit up even more. I'd end up chasing highs and lows. My post exercise highs were the WORST and it was getting to a point where I would bolus a couple units and turn off my temp basal rate 30mins before I finished exercising to combat the post exercise high.
      It was stupid and just didn't work for me. Once I stopped trying to use the pump to manage my exercise everything started working. Slowly but surely I stopped using all the pump features and that's when I questioned why I was connected if I wasn't even using it. Lightbulb!
      But I do know many MANY people who make it work.

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  9. I absolutely LOVE this post! I recently went off the pump again (for the second time) and am LOVING it. I find my control is actually better, and I love not being attached. I may go back to it eventually, but shots really work well for me. The only issue is that so many doctors/ peers make out like you're doing something SO crazy for going off of it....

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    1. I know. That's what I was kind of noticing. Like the devices make us feel "comforted" but for me it just made me feel even sicker. We're not crazy!

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  10. I was on shots for a year, then the pump for 5 years, then I took a break for a year, and now I've alternated between pump and shots for the last year. Theres are definite plusses and minuses to both. I do like being more "free" in the summer (no pump), and I find that I have really great numbers. With the pump, I am constantly fiddling and tweaking, and I get more pissed off with it when I have occlusions and high blood sugar numbers. For some reason, human error doesn't piss me off as much as tech/device error. We all just have to do what makes the most sense for us!

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