Monday, November 7, 2011
Rainy Days and Mondays
I'm going to complain today about my insulin pump - the tool I rely on around the clock to do its job and keep me alive.
In full disclosure, I should tell you that I'm a paid consultant for the insulin pump that I use - Omnipod. Or, well, I will be, once I actually start doing the work for which I recently signed a small contract. It's an occasional kind of work on an as-needed basis. I was asked to come on board by our local sales rep who was stunned watching me in action as I'd hock the Navigator CGM to anyone within listening radius at every health fair and JDRF walk. That being said, while I was an obsessed groupie for my Nav, I'm merely an enthusiastic supporter of the Omnipod. I'm a fan of insulin pumps in general and it's a great system, but...
...the Podster and I have been having some issues lately.
Since late August, I've been having problems with my pump. Technical, mechanical, physical, situational, micro-biological...you name it.
It started with a kinked cannula - the little 9mm plastic catheter that allows the pump to deliver insulin into the skin. I had one in August and then another the first weekend in September, right in the middle of attending the Novo Nordisk sponsored event where I was a guest speaker on the topic of online advocacy. That cannula was the first of some infamous double-kinked cannulas I've experienced.
Each kinked cannula failed to initiate an alarm to tell me that insulin wasn't being delivered, so the company requested them back and issued replacements. Awesome. Customer service at its finest.
Then came a couple more kinks. Frustration started setting in. Then came a pod or two that actually did alarm me with an internal error alarm. Then came a staph infection at the end of September from not cleaning the site properly before inserting a new pod. Sigh. I'll take the heat for that one (and I did).
On October 30, I had a pod that went empty during a dinner bolus, delivering only 30% of my intended dosage, but did not alarm me that it stopped prematurely. Not only that, but I continued to wear the pod for 4 more hours before discovering I wasn't getting any insulin.
The good thing about the Omnipod is that it has all of these alarms that will notify you and deactivate the pod when there is a problem with your pump. People get annoyed by the pod failures and errors, but you'd rather have that than a pump that didn't alert you, right?
Except when the alarms don't work as intended. Then you trade disaster for the complacency and trust you had that, if it wasn't alarming, it must have been doing its job.
Anyway, thinking we found a solution for the kinked cannulas, blaming it on the tightness of my skin right now, I was instructed to try the pod on my thighs.
The first one I tried there (pictured) ended up pulling away from the skin and resulted in a high in the 350s (that's very high, and over 100 mg/dL over the highest highs I've seen recently).
I ripped the pod off and cried for two hours. My husband held me in his arms while I just quietly sniffled and sobbed. I sent out a request on Twitter for support and we lay there in the dark listening to bloop after bloop as the tweets came pouring in and my tears came pouring down.
Unless you've been there, you probably wouldn't understand.
It's like if you sank a lot of money and time and energy into the upkeep of a car that you needed everyday. You lobbied for the roads in your neighborhood to be repaved, you rallied for the speed limit to be changed and the stoplight to be repaired at the intersection near your house. Every few hours, you're slipping into the garage and polishing the hood. And then someone puts a nail under your tire. Every. Fucking. Day.
There would be a day when you'd just cry "uncle." You'd back your car right through your garage door in a rage, on the flat tire. You'd have days where it didn't seem worth it to get behind the wheel. You'd cringe as you put it in reverse, expecting that it was going to happen again, no matter how carefully you drove.
That's what managing diabetes feels like some days. No matter the extent of your efforts, there are road hazards you can't account for. And there's always someone standing at the intersection rolling their eyes because you're having another "problem" driving. I've had two people in the last month mention my "problems" with my pregnancy with Sweetie - which, to my memory, was incredibly easy and perfectly healthy. I just happened to have diabetes during it.
Those onlookers had better step back from the curb.
But here's the thing.
I'm not out of options yet. I've ordered two different adhesives which I've heard are miracle workers. And I'm going to attempt to weld this pump to my skin to see if I can keep the pod from being jostled in the places I prefer to wear it and in the spare places where I may have to wear it. So it'd be like re-enforcing my tires.
I have my trusty old Cozmo pump and enough supplies where, if I decide I just need a break, I could switch to that pump for a few weeks to see if I have similar problems. Drive a different car for a while.
I have friends in helpful places. My local sales rep and my local clinical specialist for Insulet are both WONDERFUL men who have been calling me to check on me, emailing engineers, and calling customer service specialists. It's like having mechanics and auto parts salesmen dedicated to helping you find a solution.
And I have my diabetes management strategies. I check my BG (blood glucose) often enough that I catch potential problems and pounce on them. I have my CGM (continuous glucose monitor) to alert me to spikes and plummets. I have syringes and a huge stockpile of extra pods. I have my support community and my husband. I'm a good driver.
I have to keep getting behind the wheel. The journey is just too important. So, Tuesday, bring on some sunshine. I need a clear road ahead of me.
This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J.