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Device Frustration.

Am I a crumb because I want to rip my devices off sometimes and throw them into a great, blue hole?  Like this one?  My skin is so irritated by the adhesives and intrusions of my insulin pump and my CGM that the desire to heave them into this abyss is intense.

the Great Blue Hole – I look at pictures of this thing all the time

I hate the bulk of them.  The amount of room that my devices take up on my body and the trauma they have a tendency to leave on my skin.  I simultaneously absolutely love the convenience of them.  The fact that I can take teeny, precise doses of insulin without using a magnifying glass on a syringe or when the alarm goes off in the middle of the night, alerting me to a 70 mg/dL that was sliding towards LOW … this is the stuff that makes wearing diabetes devices worth it for me.

The pros outweigh the cons by a long shot, but the cons are a thorn in my side these days.  Or, more accurately, a wicked itch on my skin.

I took my insulin pump off one morning because the site was so sore, and so red, and the mark it left on my body was like a little diabetes bullet wound.  I have a high threshold for irritation and itch, but this site was terrible and after pulling it out, I didn’t have anything even close to resembling the desire to put a new one back in.  I went on injections for 12 hours before realizing that being on the road wasn’t doing my blood sugars any favors (I was having trouble bringing myself back under 200 mg/dL – rage bolus, anyone?), so once my Levemir injection timed out, I reluctantly put a new pump site in.  Admittedly, blood sugar control for me these days is better on the pump.

It’s not just my pump sites that are irritating these days.  This morning, I noticed that my CGM site had become red, itchy, and irritated OUTSIDE OF THE TAPE.  What the actual fuck?  Usually, I have a skin response underneath where the sensor actually is, or where any of the tapes connect.  But this round, I have a proximity rash thanks probably to continuously compromised skin (linking to it here because it’s too gross to put on the blog).  So now I’m getting a frigging rash in the places where the sensor isn’t even touching?!  I’m in a hard place of feeling safer with access to CGM data but access to CGM data produces a fierce itch.

I need a breather.  But taking one leaves me exposed.  HEAVE this shit into the great blue hole!  That’s what I’m doing mentally, chucking all these things that make my skin hurt and itch into the watery hole and watching them sink to the bottom.

… but then diving in to rescue them.  Because I hate injections and I hate going to bed without seeing my CGM trend arrow.

12 Comments Post a comment
  1. We’re only at the start of summer, and already I’ve seemingly shifted to a two-day infusion-site cycle from a three-day one… involuntarily, thanks to a combination of itchiness and “it just doesn’t seem to be working right”iness. I feel for you, and I’m certainly not looking forward to what more heat will do to these gluey-spots. (Skin wasn’t made to have things glued to it, right?)

    As for the “proximity rash” (love the term, hate the concept), that looks a lot like what I’d gotten many times when I used the Enlite CGM. The placement of the tape or the transmitter would cause the skin to be perpetually pinched just outside. The very-tightly taped part allowed for no flexibility whatsoever of the skin with body movement, so the skin would stretch and compress just beyond the tape, leaving a bright red ridge that took forever to get rid of. I see extra tape in your picture, but can’t tell if that’s what’s happening. Using less tape, or smaller non-overlapping pieces of tape actually helped a bit. (Switching CGMs helped a bit more).

    06/23/15; 11:09 am
  2. andy #

    I finally made the decision to go pump free! Still having in range bg, just takes more dillagents. My skin fortunately isn’t the issue. Items working and staying on me was my problem. Have you tried a different part of your body to rest up your current spots? Keep at its all we can do!

    06/23/15; 1:16 pm
  3. Tim Steinert #

    I thought I was the only one who wanted to yank it all out and throw it away –into the Sound for me– as I walked across the U-dub campus. To be honest, the frustration is not completely with the pump/CGM, but it’s the thing that would shock everyone around me the most (and be the most gratifying emotionally). As Tom Hanks wrote on a note as Jim Lovell in Apollo 13–“NO.”

    06/23/15; 2:38 pm
  4. Tamara #

    My 12 year-old daughter (on MDI) struggles with the same issues. She’s continually itching at her Dexcom site and I’m so-o-o frustrated trying to find a solution. Where we used to go a week or more, lately 2-3 days are the max. before she throws it into the abyss. She’s 12 and the combination of puberty, ravenous hunger (food all the time), and the dawn phenomenon makes the Dex a very helpful tool. Without it, I have no idea where she’s at. I feel blind without it and unfortunately, I’m the one who worries most about whether she’s in a healthy range or not.

    Diabetes sucks. Diabetes especially sucks if you’re 12 and wish you didn’t have to deal with diabetes (or if you’re the mom of the above mentioned).

    06/23/15; 7:26 pm
    • Martha #

      It’s a long way in my rear-view (48 now!) but I remember being 12 and having diabetes and it does suck and all you want is to be like the other kids. It gets better! And I feel for my mom now like I didn’t then.

      06/24/15; 3:17 pm
  5. Sarah #

    Ugh! I wanted to throw my pump out last summer so I’ve been on injections again for almost a year–love it. But I recently got a Dexcom and for the life of me they won’t stay on more than 5 days. And those things are SO expensive the insurance (and Dexcom) are SO STINGY with them! They with fall of or I get a raging rash around day 4-5. I feel you!

    06/23/15; 7:36 pm
  6. Jim #

    Kerri, oh Kerri. Thanks for being real. As always. This crap can get old quick, and when multiple things are wrong at once it’s MORE than frustrating. Hang in the and do your best…at whatever pace you can withstand. After all, this is a marathon and not a sprint.

    Peace and better feelings,

    j.B.

    06/23/15; 8:57 pm
  7. Kerri,
    I totally empathize! I just started on a pump last week, after 39 years of MDIs, and so far those sites are ok. However, my Dexcom sites are either totally fine, or horribly itchy!! There seems no rhyme or reason to it, no seasonal, location, or whatever-reason – just sometimes it’s so itchy I want to (and do) tear it off even if it means wasting $40…

    I find extra tape does mostly make it worse, no matter which tape I try.

    I wish I had some miracle solution for you. I wish we all didn’t have to struggle with these impossible choices, while simultaneously needing to be grateful that we have access to insulin, not to mention all this great technology…

    As others have said, it’s one day at a time, maybe trying a tape break for a while, or…? I hope you are feeling better soon!
    aloha,
    Lucia

    06/23/15; 9:36 pm
  8. Just Jenny #

    Won’t help with the itchiness, I know, but somewhere recently I saw a photo where a person used a Breathe Right nose strip across the Dexcom or pump set to keep it in place. Those things do really stick but have a small amount of sticky area. Maybe that would help. I’m no doctor, and I don’t even play one on TV, but I work you will send your body into some kind of huge shocky allergic reaction by continuing to use stuff you have a reaction to. Hugs to you.

    06/24/15; 10:42 am
    • Just Jenny #

      *Worry, not work*

      06/24/15; 10:44 am
  9. Bridget #

    Or, how about when your sensor is not not picking up sensors, or your pod won’t prime. It’s so much fun being on hold for hours, and being asked really stupid fing questions, like, did you change sites? Then, they are only happy to send you new pods or sensors, but you must mail the defective one in. HOW DOES THIS MAKE MY LIFE EASIER? SOOOOO FRUSTRATED!

    11/19/15; 3:14 pm

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