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Wondering

I’m wondering if my lovely medication cocktail is starting to not work.  Because this is my day:

pain

I’m a ridiculous optimist, so I’ll just keep thinking this is because of the weather.

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Reminded

I regularly tell people that I used to be very sick but that my disease is now well controlled.  I tell people that I used to be in a great deal of pain every day, but now I’m able to live a somewhat normal life.  I know these are true statements, but I guess I sometimes need a reminder of just how bad things were.

Yesterday, the weather in New York broke all records by being over 70*F.  It was BEAUTIFUL!  It smelled like spring and my sewing room actually could have been considered “stuffy” until I opened all of the windows.

Today, schools were closed due to ice and snow.   We had a 40* temperature drop in less than 12 hours with wicked weather following it.

I.  Hurt.  EVERYWHERE.

wicked witch pain

I know that this pain is nothing compared to the pain I used to live with daily, but it was enough to keep me in bed until noonish.  My to-do list for tomorrow looks a lot like it did today because I was able to accomplish oh-so-little.

In short:  I’m in terrible pain and I’m praising God for the daily excruciating pain He’s removed from my life.  Even if/when my health takes a nose dive, I’ve already had 10 amazing months that I never expected to have.

I’m huddled on the sofa with heating pads to keep me from weeping, and life is beautiful.

Relapsing Polychondritis is like…

Being able to attend an evening meeting in NYC and also being able to go early to have some fun in the city while I’m there. 

RP is also having to rest in a coffee shop for 1.5 hours because you are still recovering from infusions

RP is like having an energizing evening business meeting that makes me excited to go to work tomorrow. 

RP is also like having to take a taxi to the train station because I have a horrible case of Tuesday (fatigue from Monday medication)

RP is like being calm when the train you are on is in an accident and you are stuck on the train for 2 hours until they clear the tracks. What is a 2 hour delay when I’ve battled RP for 5.5 years and gained perspective on life?

RP is also like trying to not be sick on the train when the terrible case of Tuesday causes sudden violent nausea. 

That’s just today. 

Tomorrow RP will be like canceling my morning appointments because the delayed train kept me out past 1am. I will need to stay in bed for 9-10 hours to recover from today and that takes me to noon!

For the next week, RP will be like hoping no one got me sick. NYC is a busy, bustling place and its peak flu season. I’m on immunosuppressants and at risk of catching everything. 

RP is like… the gift that keeps on giving. 

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.

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?