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Fun With Infusions

January 17, 2018

Yesterday, I finished my second (last) infusion of this round of treatment.  The first round made me angry.  I slept 15 hours one night.  I don’t want to “waste” time recovering from infusions!  I had to fly across the US for work a between my infusions and that made me angry, too.  I was angry that it’s flu season and there’s a 700% increase in cases over this time last year.  I was angry that I had to fly like this:

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I was angry that they served wonderful meals at my conference and I was too nauseous to eat them.  I was angry that I couldn’t shake anyone’s hand or hug any of my friends (I work with a bunch of huggers).  I was exhausted after traveling, thank you Relapsing Polychondritis, and had an awful day my first day home.  The next day I had another infusion and am starting all over again, which also made me angry.

Generally, I’m a good sport about the limitations I face because of this disease.  I think this is all bothering me because I am basically losing the entire month of January.  January is the month for New Year’s Resolutions and fresh starts and new ideas and plans.  I love all of those things!!!  I have so many ideas and plans and things I want to do and this stupid disease is getting in my way.

The anger is always short-lived, but it is there.  Most of the time I’m quite content with my life.  I promised myself to write the truth of this disease on this blog, so I had to talk about the bursts of anger.

More often than the anger, though, is the humor.

After my infusion last night, I was exhausted from the treatment and wired from the huge bag o’steroids they gave me in my IV.  I went to bed and spent two hours yawning and dealing with a racing heart.  When my husband came to bed a few hours later, he told me the funniest joke ever:  “Just go to sleep.”

Hahahahahah! gasp.  Hahahahahaha!

He knows how wired I get from the steroids (think 10 cups of espresso every hour for days) and was trying to be cute.  I tried to not toss and turn too much so that poor man could at least get some sleep.  I finally dozed off around 4am and slept fitfully until a 9:30 am conference call that I, like a princess, participated from whilst remaining in bed.

I’ve been awake for a few hours, accomplished a few small tasks (like laundry — I had no clean clothes left!), and am ready to return to bed where I will likely sleep for 15 hours.  This is such a waste of a month, but the treatments are working and giving me 9 fairly normal months each year compared to 12 completely awful months with my health steadily declining.

It feels like I’m throwing a tempter tantrum and I should just maybe grow up a bit.

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One Comment
  1. Carole Henell permalink

    You should allow yourself a moment or two to throw a temper tantrum—you certainly have earned it. Know I keep you in my prayers…..sending germ free, gentle hugs!

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