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Correction

Yesterday I wrote that I would likely sleep for 15 hours.  I was mistaken.  I actually slept for 17 hours.

C’mon!  I had things to do today!

Infusions kick my butt.

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Fun With Infusions

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.

Published

The Mighty published another one of my articles today.  Read it HERE.

Welcome, Winter

I have been blessed with 8-9 months of pretty good days, but I’ve always been worried about winter and the return of excruciating pain and other symptoms.

So far, the pain is reasonable but the fatigue…. wow.

I’m having a week of “it takes me 2 hours to get out of bed” days.  This is a huge improvement over every other winter, but is it ok not to like it much?

Never a Bad Day

I never have a bad day, but sometimes the days fall short of “good.”

Some days by body likes to remind me of how awful I felt when my disease was out of control.  Today was one of those days.  The ninjas were attacking non-stop while I was lecturing.  I tried to work through the pain but my students could tell I was in distress.  I gave in and grabbed a chair, sitting through the rest of my lecture.  The students were fine with it and we made it through the rest of the class.

Fortunately these rough patches rarely last longer than 24 hours.  Tonight, though, I’m in my hotel bed with a heating pad by 8pm and praying to wake up in less pain.

Overwhelmed and Humbled

My Relapsing Polychondritis has been quiet for about half a year now.  I’m so grateful and loving living my life.  My biggest problems are the side effects of my medications.  How cool is that?

In the 6 weeks since I posted my video about my disease, about 10K people have viewed it.  I’ve received many positive comments that have warmed my heart.  Recently, though, I was completely overwhelmed by an in-person meeting.  An acquaintance was recently diagnosed with a different disease.  Although the diseases are different, the reality is the same:  we have progressive diseases that impact our quality and length of life.

The overwhelming and humbling part of this story is that she watched my video and told me that it inspired her to know that someone with a serious illness is still leading a productive life, albeit with modifications.  I never meant to inspire anyone; I simply wanted to tell my story.

I kept my story quiet for 5 years.  That’s a long time, but that’s when it finally felt right to tell.  If anyone reading is keeping a story to themselves, I want to add to the chorus of voices letting you know that your story can help others.  When the time is right, share your story.

1Corinthians 1: 3-4
Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.

I Miss my Appetite

I’m on a business trip and work is going great.  YAY ME!

Food and I are seriously unhappy with each other right now.  My work requires a great deal of energy so I need to eat.  Sigh.

  • I can normally swallow fizzy drinks, but not this week.
  • I normally can eat PB&J even on my worst days, but no.
  • I enjoy fruit, but that hasn’t worked.
  • Last week, I was able to survive on ice cream.  That was last week.
  • On bad days I can eat mild pizza.  I bought a pizza yesterday and took exactly one bite.

With the time I’m not spending eating, I plan to catch up on my sleep.  Maybe I’ll be able to ingest a few calories tomorrow?