So You Say I’m in Remission

Pretty much every time I visit my rheumatologist, he tells me, “you look good. You’re in remission.”

Unfortunately, by the time I get to his office, I’ve usually been awaken for about three or four hours minimum and the worst of the “morning stiffness” is over.  My body has had time to adjust to itself. Sometimes I wonder if the pain stops or if I just adjust and don’t notice it as much…

So he says I’m in remission.  But when I think of remission, I think of cancer.  I think gone.  No more.

So you say I’m in remission.  But I wake up stiff.
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So you say I’m in remission. But I don’t want to get up to walk to the bathroom because the pads of my feet are painfully swollen.

So you say I’m in remission.  But I swell up teaching a heated yoga class.

I want remission to mean gone.  Isn’t that what it means?  Guess not.  RA has different rules.

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4 Comments on “So You Say I’m in Remission

  1. Among my various jobs, I work with kids. Today at work we were outside on the playground with the kids. I asked a student to tie his shoe, but realized he was in 1st grade and didn’t know how to yet, so he asked me to tie it for him. This time of year in NY it’s still pretty chilly outside and only being on Naproxen at the moment, I realized that a task so simple as tying a shoe was going to be painful. How can I explain to these kids why I’m limited to certain tasks? Should I even bother or fight through the pain?

  2. This is something I struggle with all the time.

    As a yoga teacher, I do believe that pain is a contraindication. Pain is your body laying down the ground rules and saying no.

    But there’s an element of interpersonal practicality with children, especially small ones. While I think you could potentially explain the pain to a first grader, and maybe even see a little empathy and understanding (kids get a lot more than we give them credit for), unless you are able to give impeccable verbal cues that a youngster can understand and has the motor skills to execute, you’re probably going to end up tying those shoes yourself.

    It gets very crappy when you’re telling yourself to just suck it up and do what you gotta do though. Let yourself feel it, even though it just might hurt (a little or a lot), and do it anyway.

    You have to acknowledge the pain. But then acknowledge yourself for doing what needed to be done, for doing the best you could in the moment (especially when it’s not perfect or ideal).

  3. I also work at a restaurant, so I’m continuously on my feet lifting and carrying heavy things. I can’t work 20 hours in 2 days (the weekend) without wanting to fall apart. A lot of the work at the restaurant is teamwork, so we all have to help each other and pull our weight. When people my age complain of pain I literally laugh out loud because they don’t understand. For me to admit that I’m in pain it takes a lot out of me and my pride, but when I do say “I can’t lift that bus bin” (full of aprx 30 plates), I don’t dare to tell them why. The one time I tried I got a “give me a break” response.

    I’m an optimist as well as spiritual, but lately it has gotten so hard to not let my RA mentally and emotionally overpower me. I can’t stop feeling it, thinking about it, and let it control daily choices I make (i.e. to rest or not to rest). I know that stress is a big factor for inflammation, so how can I keep telling myself I’m healthy when my body says otherwise?

    PS- thanks for your responses, they’re good for me

  4. Meg – I have to say that I’m as grateful as your comments as you seem to be for my replies. I haven’t been writing on this blog as much lately in part because it had linked me to this tremendous burden in a way that I’m not always comfortable with. That said, your most recent comment just prompted me to write a full post about inflammation awareness and judgement. I hope you’ll find it helpful. It took me a long time to be able to listen to my body’s inflammation as anything but agitation and a nuisance, and I’m still working at it.

    It sounds like you may need to make some lifestyle shifts to support your physical self better. But I know that can be a scary proposition. It’s part of the reason I still haven’t pursued a degree in Near Eastern archaeology — I don’t know what my body would do on a field excavation these days…

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