Wednesday, March 27, 2013

Worse Than Cactus Pajamas

There is something worse than cactus pajamas. It's running into people like Kelly talked about in her blog post. The only good thing about having MG is no one has ever heard of it. There are few self appointed experts on myasthenia gravis. That's not the case with diabetes. Oh no. Everyone has heard of diabetes. Excuse me, diabeetus. Misinformation experts are everywhere and they are worse than cactus pajamas.

I was in a restaurant recently. I ordered my lunch and checked my blood glucose. Then I got XPU out of my pocket and got ready to bolus. As I was pushing buttons, a lady leaned over and said, "Oh is that an insulin pump?"

Now, that conversation opener is going to go one of two ways. It's either going to be, "Wow, my nephew has one of those. He loves it."

Or the conversation is going to go badly. Really badly.

Giving the lady the benefit of the doubt, I told her it was an insulin pump. That's when I heard it. The faint strains of Pop-Goes-The-Weasel. I accidentally turned the crank on an evil jack-in-the-box.

She said, "My son-in-law had one of those things. I don't want to scare you but he was on a skiing trip, and something went wrong with his pump. It pumped an entire thing full of insulin into him in the middle of the night. My daughter had to rush him to the hospital. I'm sure your pump won't break like that, but you be careful with that thing."


All I wanted was a pleasant lunch. Instead I ran into another "helpful" stranger who turned into an evil jack-in-the box just to torment me. I hate when this happens. The same thing happened when my daughter was a baby.

(if you are pregnant or have a small baby, please skip this next section. I'm adding space so you can do this. Scroll down until you see the cute puppies. Once you've seen the puppies it's safe to come back. Please look away and scroll.)

When my daughter was a baby I found my two-month-old blue and unresponsive in her crib. I shook her and she took a breath. We rushed her to the doctor. Evelyn had apnea and bradycardia. For some weird reason young Evelyn forgot to breathe and her heart slowed down in her sleep. She was an extremely high risk for sudden infant death syndrome. So, we had an apnea/bradycardia monitor that sounded a loud noise when she quit breathing. Evelyn had alarms several times a day. It became strangely normal to hear the alarm, find a blue baby, shake her awake, and then go back to sleep.

I had to take an apnea monitor with me everywhere. I was in the grocery store with my new baby and her monitor. A stranger walked over and said, "Is that an apnea monitor?"


"I'd never use one of those. My friend's baby died while she was on one of those things."

I was stunned stupid. Twenty-two years later I am still stunned stupid. What an evil thing to tell me! It's been 22 years and I still refuse to even tell anyone with a new baby about what happened when Miss Evelyn was little. She's fine now. Seriously. Miss Evelyn out grew her problems when she was nine-months-old. Even though everything turned out all right, there is no way I would ever say anything so cruel to a new mom. I won't use my own story as a weapon to harm someone. Ever. That's why I gave the warning before typing this.

OK, I am adding puppy pictures now so anyone who really shouldn't have read that section can come back.

Puppies to lighten the mood a bit... There's Honey as a wee pup and April at Honey's birthday party. Aw...

Now that we're all back together again... Angry switch flicked back on...

People who tell me horror stories are worse than cactus pajamas. I don't need the mental image of my pump going crazy and pumping a new cartridge full of insulin into my body. Could it happen? I suppose it could happen. My pump is mechanical and mechanical devices can go crazy. Is it likely? No. A meteor could also crash into my car while I am driving. I'm not going to be afraid of XPU. I don't want to live my life that way.

Why do people tell horror stories? Are they trying to be helpful? Helpful would be telling me how neat insulin pumps are. People who tell horror stories deserve cactus pajamas. I wish I could give them a pair and say, "Snuggle up with these PJ's and stick it!


  1. Totally understand where you're coming from... but on the other hand, if something tragic happened to me or a family member because of a particular device/medication, I'd probably feel obligated to warn everyone as well. Imagine if something happened and I didn't warn them first? I'd feel awful.

    That said, there's a right time and place, and a right way to say these things. There also needs to be a conclusive cause-and effect relationship. I've heard of pump malfunctions, and I've also heard of safety features that prevent such malfunctions (different generations of pump, perhaps?). I also pay close attention to my devices so (hopefully) I'd catch a malfunction before it was too late.

    But (yellow-stop-sign-to-puppy-part) how terrifying that must have been! But I'm pretty certain that a monitor didn't cause what she was referring was the underlying condition. That word of "caution"was totally inappropriate.

  2. There are times when you know someone is trying to be helpful, and then there are the people who are just trying to mess with you. The lady in the restaurant wasn't trying to be helpful. She had that glazed eyed crazy look to her. But, yes, I do agree I want to hear about pump problems so I can catch them if they happen. I've already had my pump filled with skunky insulin and had my BG go up like a rocket. I watch my CGM for warnings like that. Still, there are people who get off on messing with you. They are the ones who deserve cactus PJ's!

  3. Ugh - you are so right! I hate when people tell me about all of the bad stuff. As if we really need to hear that! How about telling me of your insert-relative-here and how well they're doing? That might actually help me get through my day.



I am not a doctor. I do not have a medical degree. Nothing on this site qualifies as medical advice. These are lessons I'm learning at the University of Catastrophe. What I find to be correct answers in my classes may not be the right answers for you.

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