Sharing the lessons along the way…


Despite having been sick since my last post, I have moved forward with my plan to remove this intrathecal baclofen pump.  I had to seriously pump myself up and do some serious anxiety management to move past my cold feet, however.

Last week, I put on my big girl panties and made the phone calls.  I talked to the pump doctor’s nurse, who confirmed what I suspected.  The doctor will want to reduce the dose before taking the pump out of my body to reduce the chances of a baclofen withdrawal syndrome.

Next week, I have an appointment to discuss this with the doctor, while my pump is scheduled to be refilled the following Tuesday.  The nurse said that he would likely reduce the dose at the scheduled refill appointment instead of refilling it.  I will know more after I meet with the doctor.

Rolling Ball Museum 33

Rolling Ball Museum 33 (Photo credit: Jinho.Jung)

I had a feeling that once I started the ball rolling, it would start rolling very fast.  I have mixed feelings about the speed of the ball.  I have not been feeling well since before I left to watch my niece graduate and ended up pretty sick after I returned.

That makes the ball feel like it is moving at warp speed because I have not been able to get some of my preparation tasks finished.

There are many unknowns as the ball rolls forward.  I do not know what the first reduction in dosage means.  I do not know if it means I use cane or a walker.  I do not know if the first reduction will make it unsafe for me to walk my dogs without a power wheelchair or scooter.

I do not know if it means I am unable to drive a car.  I will not know any of this until it happens, which makes planning for it The Tawny style a bit of a challenge.  I am keeping my big girl panties handy.  And have decided to build a toilet paper tower in my bathroom.

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Comments on: "Big Girl Panties, Ball Rolling, Brief Update" (4)

  1. Big girl panties do come in handy sometimes as do toilet paper rolls;) Sending a lot of positivity your way, Tawny.

  2. If I could send it through the internet, I would have a roll of toilet paper on its way to you. Just leave enough room to get to the toilet!

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