Prednisone blues

I have to laugh at myself. I didn't want to be on the prednisone because to me that feels like admitting this disease is real. Now that I'm just about off my taper I want it back. I would say the leflunomide has done roughly zilch for me. My hands are swollen and hot, my knee is agony, and both my ankles and feet are cussing quietly under their metaphorical breath. I see my rheumy this week, and we'll talk about what's next, I guess. I hate this. I played piano yesterday and it hurt the whole time. We were in the lake for a while, which was awesome for my knees and ankles, but I'm so sore today it's ridiculous.

*SIGH*

So this is what I do on crappy days. I have a list of words that really define me to combat all the negative ones I come up with. I switch it out every week or so, but my current list reads: Persistent, Articulate, Formidable, Beautiful, Loved, and Inspirational.

It isn't that I'm trying to convince myself that everything's fine, it's more that I remind myself that pain is part of me, not all of me. What do you guys do?

Bats

8 Replies

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  • Hi Bats. It's just one big merry go round of feelings for me too on the drugs versus disease front. I posted earlier about my own dilemma but going to scrap it as I have changed my point of view again now. I think it's hard because we credit whatever drug we are on when we feel relatively well - as I've done today. In my case I'm crediting slow release Tramadol for knocking my pain on the head pretty effectively since I took it about 21 hours ago.

    But then again perhaps it's just the variables of this disease or diseases and nothing to do with the Tramadol or the low dose of Pred I'm still taking?

    I like your list of words very much. When my RA was bad for the first few years I used to write short poems using words that felt they punched to the heart of my experiences. Now I read them and roll my eyes because the words have changed with the symptoms and are meaningless to me. I think I'm better off sticking to visual images as I was trained to do.

    But then your words usually impress and move me far more than my own I must say. X

  • The form I'm in recently......a bottle of Melbec!

  • Great technique! I have had a love hate relationship with cortisone shots too but they have got me through my first year of RA when unfortunately none of the DMARDS worked.

    What kind of music do you play?

    Cheers Doreen

  • Hey DoreenI used to play classical, but after my first stroke I lost some fine motor control, so now I play blues and jazz, where my left hand has a little more fudge-room. Lots of improv, because I can't remember sheet music anymore *wry grin* I sing, too, and fortunately that fine motor control is fine. :)

    I'm still in my first year after dx, and so far the DMARDS aren't doing much for me, either.

    Cheers,

    Bats

  • I drink lots of vodka.....lol....just kidding.

    Seriously though, I don't like focusing on the pain and my swollen joints. Yes pain and swollen hands and feet are apart of me, but they don't define me either.

    I've always enjoyed gardening, but now I find myself searching for plants that have ....(for lack of a better word)... disabilities. My husband calls my new garden "Sue's Rescue Garden". Haha. For some strange reason I find comfort in looking after these plants. My goal is to make them thrive again.

    Take care

    Sue

  • Hold out until I get to where you are now then give in and take the pred. Then look sheepishly at Rheumy as he gives me I told you so look. Then same again to husband and mother in law when I get home.

  • *laughing* oh my, yes. It's good to know I'm not the only ridiculous person around ;)

  • Hey Bats- jazz & blues are good and I am really impressed if you do improv! I am a music lover but just listen. My partner has a trained soprano voice and is very knowledgable about the music world, so I get to experience lots of great music thanks to her. Good luck with the next steps. Cheers Doreen

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