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Now and Then

March 3, 2014

A year ago, I posted about travel and how difficult it is to be a business traveler with a chronic disease.  Today, I am still a business traveler, and traveling is still difficult.

A few things have changed in the last year:

  • I’m not in nearly as much pain as I was a year ago
  • My body has adjusted to the medication so I have far fewer side effects
  • I hardly every have to use my cane
  • I’m smarter with my luggage choices
  • I keep my disease in mind when I make my travel arrangements

I no longer use a wheeled computer bag; I carry a backpack.  This leaves my hands free if I need to use my cane.  It also leaves me a free hand to catch myself in case I stumble or fall (a hint for any of us who perform random gravity checks).

I make my travel arrangements as friendly as possible.  If I have to leave a day early, I do.  If I have to stay a day late, I will.  I try to not schedule “2am wakeup and hit the road” days.  I try to schedule a rest day here and there.

Last year, I was sick and in pain and very scared.  This year, my attitude is completely different.  Relapsing Polychondritis is a fact of my life, but it does not define my life.  I have made some changes to accomodate this disease, but this disease doesn’t control my life.

I am living with (rather than dying from) a chronic disease.  It’s a subtle yet important distinction.

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2 Comments
  1. Maria E Frioni permalink

    What I have just read has made me happy. I have just been told I have RP and am doing all those lovely first test. Today I had neck ct ,and chest xray and received a call I have a small nodgle on my lung now with all my test tomorow I have to have a chest ct.It seems just when I get one test done they say I need anothet. I’m trying to stay positive and tell myself that as long as I stay complient and go to my appointments things will be ok .After reading through your blog I can see that it doesn’t have to end my life just change it. To top things off I’ve been having heart palpitation that they say are hormonal because of my age and stress related ugh.

  2. nolongeraboutme permalink

    I had about 6 months of tests then more news then more tests. I was scared to death. My news isn’t always good, but it is nowhere as bad as I feared. RP is a part of my life, but it isn’t my WHOLE life. I have a real life — family, job, interests — and I love my life!

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