Rheumatoid Arthritis

Reflex Actions

I am right-handed.

I am so right-handed that when I have chosen to drive with my left hand low on the steering wheel to give my right shoulder and hand a rest, I will look down and see that I have changed back to the right without deciding to do it consciously.

So although rheumatoid arthritis is noteworthy for being a parallel disease in which joints on both sides are affected, my right wrist, fingers and shoulder hurt more because I cannot seem to help using them more. I am trying, all day and every day, to adjust my habits, but some things we do so reflexively!

This disease, this condition, this ailment, this illness–I don't like any of those descriptors, I often use "condition" because it amuses me to speak of "what condition my condition is in"–this situation demands that I become conscious of some of the things I do and many of the ways I think reflexively. It demands that I look differently at my life.

Just a few months ago I spent a lot of time thinking about when I could get into a pair of size 12 jeans. I'm still thinking about it, but not because I care what other people will think about how I look. Yes, that was part of how I was thinking about it. I wanted to prove something to the world, or perhaps I wanted to prove it to myself and see my reflection in the world's eyes.

Now I'm thinking about having less weight to support with stiff joints, joints I might damage by my own wrong usage since they may already be compromised by, well, my condition.

My right hand and my right shoulder bother me most of all, and I'm sure that is because I use them so much. I'm at a funny point in the medication process, on a reduced dose of prednisone and a fairly typical dose of methotrexate, and there is a real difference as the prednisone decreases, and it's not a good difference, either because the methotrexate isn't doing all it can yet or will eventually, or possibly because it's not a drug that will work for me.

So I'm stiffer and more sore than a couple of weeks ago, but on the bright side I'm sleeping at night (no more middle-of-the-night prednisone-fueled euphoric insomnia, which is a good thing). I'm nowhere near the level of pain and stiffness I had in April and May, when a long time sitting might mean I couldn't get my legs under me to walk, or when I couldn't roll over in bed. I bet I didn't blog about that, because one of my reflex actions is to deny things that are really bad, an example of employing denial as a spiritual survival practice. I'm not sure how I was able to do that when I woke in the middle of the night and could not bend the fingers on my right hand.

Now bending the fingers on my right hand, curling them in toward my palm, has become a reflex action. I do it as soon as I wake up, almost before I am fully awake. I want my fingers to work! I want to use them to knit, to chop, to wash, to stroke, to pet, so many things.

Today I shook an older woman's hand and she commented that my handshake was weak. It's not, really. But I am protecting my joints the only way I know how, discouraging a hard grip from others by making mine softer.

Today I used my right hand to scoop the water from the font and pour it on a five-month-old baby's head, a sitting-up baby clasped in my stronger left arm. My rotator cuffs are among the joints affected, the right more painful than the left, and even lifting my arm to put my hand on his head strained the joint.

There are things I have to be able to do, to throw my arm up into the air when I give the benediction, to shake hands with people after worship, to pour the juice into a cup and lift it, to break the bread: my reflex actions on a Sunday morning.

21 thoughts on “Reflex Actions”

  1. Oh, Songbird, I’m so sorry. It must be awful. The prednisone night mania is awful, so I’m glad that’s lessened for you. I hope that you can find medication that works for you.

  2. I hear you
    For lots of folks, I am known as a “hugger” but most people don’t know that is so I don’t have to shake their hands.
    And, fwiw, as I read your post, I thought of Isaiah 35:3-4a

  3. Thank you, Vicar.
    In case anyone’s wondering, here’s the NRSV:
    Strengthen the weak hands, and make firm the feeble knees. Say to those who are of a fearful heart, “Be strong, do not fear! Here is your God.”

  4. Dear Songbird,
    My prayers go up for your healing of this affliction. It’s a robbery that bites more than the one of your iPod.
    …meanwhile…..call my mama. Really.

  5. I can’t even imagine how hard it is to be cognizant of overusing your right hand and arm when it’s so reflexive to do so. It would really take some serious forethought, and you have my love and prayers friend. (((Songbird)))

  6. Dear One,
    We take soooooo much for granted. Whenever I raise my hand to give the benediction, you will be in my heart and my prayers (((Songbird)))

  7. Tears. No, you did not blog about those effects of the condition in the Springtime. I am grateful that you do it now…both that you share it with us, and that you let us know what this condition can do.
    ((SB)) that’s a very gentle hug

  8. It’s hard to stop those reflex actions, but you are a thoughtful person and I know you can learn to be mindful. Praying for less pain. (And also feeling a little guilty for my own actions in the past of judging people by their handshakes. One can’t always tell by sight when someone has a good reason for a “weak” handshake.)

  9. I hear you girl, I hear you!
    As I am decreasing my prednisone, I am noticing how much stiffer I am. I don’t like it either. The MTX is doing good. I made it to today before the pain came back. That means that next week will be without pain.

  10. Oh, dear. I hope you find some relief. I’m sorry to hear that the methotrexate isn’t getting the job done.

  11. I wish there were a cure for RA, because it sure causes a lot of folks pain, including my beloved 25-year-old daughter. I hope that your physician finds the right medication combo for you, Songbird.

  12. (((Songbird))), you are a marvel. I don’t know what else to say. Prayers, love.
    Pax, C.

  13. Prayers and hugs for you and holding out hope too that when you zip those size 12’s you’ll be doing it with a pain free or much less pained right hand. It’s soo hard to look beyond the right now when pain’s involved, so we’ll hold the hope for you till you can.

  14. We continue to pray for you in the mornings, and I send up a little one whenever I think of you (e.g. when I use the dishcloth your hands made with love).
    ((SB))

  15. Songbird, thank you for your vulnerability. I just was whining at my place about the effects of chemo, and hearing your voice – not whining, showing me how to turn to God for strength and comfort – was like a balm.

  16. Oh, I’m so sorry to hear of our struggle with this. I’m late in reading about it, but you are in my prayers.

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