Friday, July 30, 2010

How big of a deal?

I'm back from vacation (East Coast of Canada - very beautiful, I've never been before), and have had lots of time to think and reflect in the 4,200 kms of driving that we did in 10 days.

Some days, my RA seems like quite a small deal. Life is humming along, my joints are good, no side effects in sight. It's just all tickety-boo. No big deal.

Other days, weeks, months, it is a very big deal. I am tired. I am flaring. I'm having side effects from my meds. I feel physically and emotionally like crap.

Where is the balance? How big of a deal is it? That is what is bouncing around in my head. I don't want it to be a big deal - but it is. I've spent the majority of my adult life trying to put my RA in a neat and tidy closet and closing the door, putting on the padlock and all but throwing away the key. I didn't really talk about it. I didn't really address it. I took my meds, went to my appointments and life carried on. I didn't discuss it with friends, co-workers and barely my family.

And then my life and my RA started intersecting. I wanted to have a baby - so off to the rheumatologist to take me off some meds (methotrexate) and put me on some meds (more Prednisone). And then I was pregnant and considered high risk, but both of my pregnancies went along quite well. I didn't flare, nor did I have a remission. Par for the course.

And then I couldn't really wash my hair that well. And I couldn't really lift my arms up that high. And then I had my shoulder replaced.

Looking back, I think my appointment in December 2008 with the Orthopedic surgeon (when I was told a joint replacement was in order) was one of the defining moments of my life. Pretty big statement, but it was a pretty big day. Up to that point in my life, I don't know that I really understood the magnitude of the disease and it's role in my life. I spent so much time trying to not let it have any part of my life, and I dismissed and downplayed any part it that may have impacted my life.

I have RA. It hurts. It impacts every aspect of my life. My marriage. My children. My friends. My childhood. My future. Some days more, some days less. But it is always there, lurking like a shadow. I don't want RA to consume my life, but I am moving closer to finding the right amount of space for it in my life.

2 comments:

  1. I can so relate to this. My RA lives in my computer; it's not allowed out to interfere with my real life. Yet somehow it keeps escaping and wreaking havoc. sigh

    Good luck finding the right amount of space in your life!

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  2. Any Auto Immune Disorder is no walk in the park. RA is especially difficult for me due to being indoor with air running is killing my joints. If I don't turn the air up I can't breath do to the fibrosis in my lungs. If I turn it down a bit, I sweat to death from menopause and the horrid indiana heat. I'm screwed either way. So, I bundle up with heavy wool socks and sweat coats. Then I rip of said coat when meno strikes. I think I would be okay if the RA would just hit a rythmn and stay with it. Not up and down all the time. Throw lupus in the mix and it's just down right unpleasant. Hugs to you. Tazzy

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