Fires, Strawberries and Cotton Balls

Since there has been no doctor’s appointment to decrease my baclofen dose, I have opted not to do a catch up post.  Instead, I want to tell you about the fires of the week.  I want to share what has been happening in my mind in anticipation of Tuesday’s decrease.

I am not sure how often I say them aloud, but the phrases are constantly repeating in my mind.

“I’d better get this done before Tuesday in case I cannot drive…”

“I should do this now in case I cannot do this next week…”

“This might not be a problem now, but what if it becomes one and I cannot do anything about it after next week?”

This past week, I have felt like a firefighter.  I have flown down the pole, suited up and hopped on the truck to put out whatever fires may or may not exist.  Really, I was more like a firefighter who was all suited up, riding around in a big truck looking for the arsonist who had not yet lit his match.

Every little thing became a potential bigger thing.  For one relatively important example, my dog More’ had some accidents where he slept, several nights in a row.  If Tuesday didn’t include being a total of 25% less baclofen, I would have increased his pain medications and watched to see if there was improvement.

But oh no.  Tuesday is Tuesday and I had better figure out exactly what is wrong with him before then, so I have to figure out how to get him into the SUV I am borrowing to get him to the vet.  I couldn’t quite figure that one out, so I followed him around the yard to catch a urine sample to take into the veterinarian in the meantime.

My mind wouldn’t allow inaction on the issue.

My mind wouldn’t allow inaction on any issue, in fact.  I couldn’t possibly buy more toilet paper (although a friend brought me some), but I do have at least two of most of my other toiletries now.  I even picked up an “as seen on TV” purchase.

I couldn’t imagine why I was feeling so tired each day this week.  I couldn’t focus on what I needed to be focusing on (work, for example) and found myself behind.  My place was incredibly neat and tidy, but I felt behind and like everything else was more urgent.  It was urgent that I put out the potential fires.

Yesterday, I found my focus.  I completed work tasks, tried like the dickens to be present, did a test dog walk in the new power wheel chair for photos the potential book cover designer needs, watched grass change colors of green in the rain, and watched a baby strawberry grow.

There is no fire will be my mantra for the week…

There really is no fire.

(But just in case, I will drown it in toothpaste or smother it with cotton balls and toilet paper.)

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Toilet Paper Towers, Big Girl Panties, Etc.

My Tower of Toilet Paper (overhead view)

It was an ordinary morning.  The dogs woke me as the sun was rising.  I made coffee, checked my email, fed the dogs, and took them for a walk.

I showered, put on my big girl panties, and rehearsed what I was planning to say at my pump doctor appointment.

I was surprised I slept without waking up more often worrying about this particular appointment, as I usually do before most doctor appointments.  I felt surprisingly well rested.

The closer it got to time to leave, the more anxious I got.

Was I really ok to reduce the baclofen dose in the pump today if it made sense to do so?  That was the agreement I made with myself two weeks ago when I called, but would that be what I would do at the doctor’s office?

I made it out the door, down two streets then turned around to come back home.  I decided I should at least grab my cane to put in the car just in case.

All the way there, I reminded myself that I had my big girl panties, and that would make me tougher than I felt.

The doctor told me it was going to take quite a while to reduce down the dose before surgically removing it.  He will reduce 10% each week until it is basically at no daily intrathecal baclofen.

We discussed a few other things before he said, “I will go get them to reduce you today.”

I am certain I looked like a deer in the headlights as I wimpily muttered, “I am not sure I am prepared for that today because I drove myself.”  He explained that it would likely take 24 hours before I would notice much of a difference, but it was ok if I wasn’t ready today.

Dammit, I thought to myself.  But I have my big girl panties.  I followed up quickly with, “Oh, well, if that is the case, then sure, let’s do it.”  We bantered around between a 5% or 10% reduction and agreed that 5% would be best for today since I wasn’t quite prepared.

Honestly, I couldn’t be any more prepared in terms of assistive equipment.  I checked off nearly everything I had hoped to get ready before this decreasing started as of last Saturday.

Seeing the power wheelchair in my kitchen that I will use to walk my dogs went from a “check” to more reality than I felt prepared for Friday.

Seeing the new front entrance ramp completed on Saturday was another dose of reality that I wasn’t sure what to do with.

It is only Tuesday.

So, I stopped on the way home from my first baclofen dose decrease to buy some toilet paper—two 18 packs to be exact.  It is a challenge to take a picture of the toilet paper tower so far, but I have a ridiculous amount of toilet paper in my little bathroom.