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What’s New and Exciting?

My mom always asks this question when I call her and I have to remind her that not everything “New and Exciting” is good.  Like this:

I’m getting some funky liver numbers.  This could be from medication or from a virus.  I’m rooting for the virus because if my medication is giving me liver trouble… well… I’m in trouble.  That would involve changing medications THAT ARE WORKING and I’m not thrilled about risking Relapsing Polychondritis having its way with me after 23 months of ignoring me.

Also, I have fatty liver.  I’ve been advise to stop drinking (I have never been a drinker and haven’t even had a sip in over 5 years), eat a low-fat diet, and lose weight.

If you’ve ever wanted incentive to lose weight, a “Hi, your liver hates you” phone call will do the trick.

While I wait for a re-test to see what my liver numbers are doing, I am adjusting to a new life.  In other words, I miss bread.  And chocolate cake.

If you know me in person, I’ve lost enough weight that you’ll soon be able to notice it.  Please know, though, that “Hey, you look great!” isn’t the motivation; keeping my liver working is.  But I’ll take the compliment, thank you very much!

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Not a Chance!

I refer to my husband as Super-Hubby, and he truly is, but I recently saw a commercial that shows what a REAL super-hubby should do when his wife returns from an infusion treatment:

I have treatments in a few weeks and now I expect my husband to:

  • Snuggle with me on the sofa
  • Rub my forehead
  • Wrap me in a shawl
  • Take me for a walk in the yard
  • Read a book to me

My husband only:

  • drives me to and from the hospital
  • brings home a variety of foods in case anything sounds yummy
  • is willing to drive any distance for anything I might want to eat
  • handles 100% of the household responsibilities
  • listens to me whine

I’ll report back in a few weeks on how he handled my increased expectations

The High Price of a “Normal” Life

My job involves travel and I give the appearance of a high-energy person.  I am upbeat and enthusiastic and do what the job requires.  By the end of my trip, fatigue wears me down and the pain reminds me that I need to go home.  I spend my first day or two at home with high pain and low energy and go to bed when the day finally is too much to endure.  By the time I’m back on my feet, it’s time to leave for the next trip. 

This is my life.  

 

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.

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.