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The Alien is in my Brain

I get the impression that some people handle infusions really well.  I’d like to be one of those people, but sadly I’m not.

I make jokes about “(IV) pole dancing,” pack goodies to make the day easier (fuzzy blankie, chocolate), and have chicken/rice soup waiting for me in the crock pot when I get home.  Still, it’s pretty awful. I tried to be human last night but gave up around 7pm when the alien was trying to burst out of my skull.  It took hours for the pain to let up enough for me to sleep, and then only fitfully.

Fifteen hours later finds me still in bed.  The alien is napping now and I hope he stays quiet in my brain today during my full schedule of gastro symptoms and nausea.  I’m thinking of the household work that I should do as well as the “work” work I should do.  I’m also thinking I should attempt to shower at some point today.  I cautioned my husband “Don’t expect much.”

I already need a nap and am trying hard not to dwell on the fact that I get to do this all over again in 13 short days since I know that Round Two is always worse.  Whimper.

So yes, while I am grateful that these infusions are working and keeping my Relapsing Polychondritis quiet, I still whine when I feel awful.

Allow Me to Explain

I mentioned to some people tonight that it was the first time since starting my infusions that my Relapsing Polychondritis hasn’t flared up between infusions.  This is most excellent news and they agreed!

Them:  “We’re so glad you are feeling better!”

Me:  “Well…. I’m not actually feeling better.  In fact, I feel pretty awful pretty much all of the time.  But that’s just my fibromyalgia acting up.  It’s only pain so no big deal.”

They got really confused looks on their faces.  How do I explain to them that my RP wants to kill me and I’m celebrating that it’s quiet and hasn’t progressed this season while I’m in severe pain from my stupid fibromyalgia that doesn’t want to kill me and that, in the balance, this is all good news?

Wanna Hear a Joke?

Today is my first day of 29 days at home.  I’m so excited!

The weather is getting warmer and I don’t feel awful and I have 29 days at home.  This makes me feel like I might be able to improve my health by eating well and moving more.  Heck, I might even lose a few pounds!

Then I remembered that I’m home for 29 days because I have a series of infusions coming up.  These treatments involve high doses of steroids.

For a few minutes today, though, I thought that I’d be able to lose some weight while drowning in steroids.

Funny, right?

Checking In

Relapsing Polychondritis is roller coaster.  Sometimes I post “everything hurts and I’m really discouraged” and sometimes I post “Hey!  I have good news!”

This post is neither.

Things are OK.  I was traveling for work last week, am currently home for two days, and will travel for work again the day after tomorrow.  I am tired and sore and incredibly tired of people.  This is how I am after every business trip and my healthy co-workers all feel the same way.

What’s really cool is that the biggest physical problem I have is that I have a bum knee.  Stairs, kneeling, and bending aren’t my favorite things.  Standing and walking, however, I can do all day.

What I mean to say is “I’m doing about as well as I can possibly be doing, and anything pain is the same as the healthy folks have.”  That’s pretty much as good as things get in my world.

I’m grateful.  Tired, but grateful.

Messing with my Head

In my head, I have a certain image of myself where I’m always the hero of my own story.  When faced with a challenge I view myself as a person who will overcome any obstacle by grit.

I am facing a challenge:  I am losing my mobility.  With a great deal of pain, I can walk on flat surfaces.  If I’m very, very careful and have some luck I won’t fall down.  This is as it has been for a while.  My new challenge is the stairs.  I haven’t been able to reliably walk the stairs in over 3 months.

I want to tackle and conquer this problem like Sylvester Stallone in Rocky IV.  While I don’t intend to drag around a sled full of boulders, I keep picturing that I can fight this and come back stronger.

The truth, however, is that this might be a forever thing.  I have a terrible, horrible, no good, very bad knee that isn’t going to get better until I get the joint replaced.  I can work to strengthen the muscles around the knee to compensate, but every time I pledge to be fierce the weather makes a painful change, I have a flare-up, or I fall down the stairs.  I want to become best friends with my treadmill, but the doctor ordered “no treadmill.”

This is messing with my head.  I don’t feel like I’m acting like a hero; I feel like I’m under the circumstances and can’t catch much of a break.  I know I should fight like a warrior, but I really just want to stay in my bed and watch Netflix until the pain stops.

I need to come up with a plan.  Right now my plan involves Netflix and needlepoint — I’m stitching WWRD. (What Would Rocky Do?)

I’ll be fierce tomorrow.

 

You Know Where to Find Me

This week, I’ve been incredibly easy to find.

  • Monday:  at home on a self-imposed “recovery day” from working out of town last week/weekend
  • Tuesday:  at home in blizzard
  • Wednesday: at home under 2 feet of snow
  • Thursday:  at home because I wasn’t feeling spiffy and roads/parking lots are still a mess
  • Friday:  at home, wincing through a flare-up and asking super-hubby if he will run today’s errands for me tomorrow.  He will, because he’s a prince
  • Saturday:  I asked my magic 8-ball if I’d make it out of the house tomorrow and it said “Not Hopeful”
  • Sunday:  church!

Thank God for church.  After church, though, I’ll be at home.

Check Me Out on “The Mighty”!!!

One of the articles from this blog was re-publishes on The Mighty todayl

Check it out HERE.