Sharing the lessons along the way…


I wish I could describe the alarm that started sounding from my pump yesterday morning at 10:21.  I wish I could describe just how weird it is to have beeping coming from inside my belly, from inside my body.  For about the first eight hours it was sounding every five minutes.  Then it started to do every 10 minutes.

Do de do de do de do de   (More like an alarm than the Jaws theme music.)Medtronic Pump

It was pretty loud and the only time I couldn’t hear it was when I was in my friend’s pool.

How can a pump that is off sound an alarm?  Why would a pump that is off sound an alarm?

It isn’t just one beep or a beep beep beep that it does if your medicine level is low.  It is the critical alarm.

I called the doctor’s office to leave a message for the nurse after the second one.  The first one happened and it wasn’t until the last do de, that I realized holy crap that was coming from me.  She said it was normal for an alarm to do that 48 hours after stopping the baclofen.  (Wouldn’t have hurt to mention that Tuesday.  Just sayin’.)

Will it eventually stop or do I need to get it programmed to stop?  She wasn’t sure, but had a call into the pump representative to ask.  I never heard back by the end of business yesterday, and by then at least it was alarming less frequently.  According to what I found, it is going to keep doing it.

This is certainly the main reason I chose a Codman as my first pump.  No bells and whistles and no alarms.

Between the increase in clonus, now the beeping, and the newest symptom that has surfaced once there was no more baclofen, I am surprised yesterday was relatively unemotional.

I was only briefly tearful twice yesterday, compared to Wednesday’s meltdown. Those were because I was so grateful for my friends, not because I was freaking out.

There is a new symptom that I don’t recall having in the early days of my illness that I woke up with Wednesday morning.  I had burning patches back then—just patches of burning skin that seemed to mean nothing in terms of my diagnosis.  I no longer had them with the baclofen pump.

This is more like burning everywhere—as if I have a bad sunburn everywhere but my face, the soles of my feet, palms of my hands and scalp.  Since I fairly recently had a sunburn, it is the best I can do to describe it.  It seems to happen worse when my muscles are moving than when they are still; when I am hot versus when I am cold.

It feels different to me than the burning torso I have had since this Medtronic pump was implanted—more generalized and less severe, but troubling just the same.  I have no idea if it is related to the baclofen, the illness, or something unrelated.

I can sum up my Thursday with three words.

Beeping, burning and jerking…

That’s almost worth a chuckle or two for me!

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Comments on: "Beeping, Burning and Jerking Oh My!" (4)

  1. Did some behind-the-times surgeon suddenly realize where his beeper went?

  2. sounds like the makings of some great science fiction.
    hope it doesn’t keep you up at night, you’ll be needing that rest.
    wonder if the burning isn’t just your suppressed nerve endings
    waking up and flexing their muscles. if that’s the case, then
    those feelings should fade with time – – – not soon enough, i’m sure.
    sort of like a niacin overdose – pins and needles everywhere ?

    • My friends were joking Thursday that I had a text! I hope you are right about the burning! It isn’t like pins and needles…more like my skin is on fire when the muscles move. It is going to make rehabbing interesting to say the least!

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