Bad toebelly

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What is this nausea in my big toe?

On my left foot. Right

Now. How dare that toe mimic

The sickness of my hands?

This toe-nausea burps memories

All buried in the far deepest

this turtle looks like how my toe feels.

this turtle looks like how my toe feels.

pit of my mind. I’ve

dreamt-begged the source

To never never return never.

But now I have this big toe that

longs to puke. I move it, slow

With my breath held but it

Rewards me with pulsing throbs

And I cannot believe it.

I cannot.

Ahem.

I visited my rheumatologist last Saturday morning. My blood tests finally match how I feel, with a wildly elevated sed rate and CRP levels. Seems stupid to feel so triumphant, but I can’t help it because now there’s proof the pain’s not all in my head.

So much for that remission I already knew I wasn’t “in.”

My doc, a bit subdued, is increasing my Plaquenil dosage. It’s the only one of the three DMARDs  I take every day that isn’t already maxed out. And I’m to start taking Lodine, an NSAID I’ve not tried before, as soon as it arrives in the mail.

Then I wait three months. Or maybe six, if I’m feeling exceptionally patient and brave in the face of growing pain and danger of disability. And then, if I still have belly-aches in my hands (and toes … sigh), we’re loading for bear. I’ll start shooting up Humira.

I’m shaking the threat of it at my grubby old dragon like a shaman’s rattle, hoping to scare him back into his pit again.

Shaking … from the threat of it, too.

Please forgive the bad poetry. Sometimes the ol’ mood demands it and I just have to give in.

9 thoughts on “Bad toebelly”

  1. Oh Wren, I’m SO sorry – but I completely understand and sympathise with your triumph – felt just the same when I went on to MTX. I also remember the feelings of frustration about ‘now wait six months’. Aaaargh. But do bear in mind that lots of people have fantastic success on Humira. (They’re the ones mostly not blogging about it because they’re too busy being in volley-ball championships or something! )

    Well I’m no poetry expert but I rather liked the ‘bad poetry’. Seems a shame that our culture demands that anyone not lauded as a published poet has to apologise for their poetry! 🙂 (Very amusing book by Stephen Fry on the subject called ‘The Ode Less Travelled’. (Yes, I did mean to put the double el in – it’s British spelling!)

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  3. Having got my toe in the research door I’m working on getting through to rheumys that their fixed concepts about how we are on the basis of our ESR and CRP are not entirely – er, ACCURATE. I know I haven’t got RA but the acute phase reactants have got far too good a press all over the place. There is already evidence they lag behind the disease process – is it fair to wonder if they lag even further behind if you are on ANY medication?
    I partook in a teleconference the other day – I really regretted not being able to see his face as he said in a genuinely incredulous tone “You mean that patients don’t feel back to normal when they are on pred?”. Um – that’s quite correct…

    I thought the pome was pretty reasonable too!!! (And that spelling was deliberate too 😉 )

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  4. Oh, Wren. I am so sorry. I hate this for you. (Maybe you hurt your toe kicking that ole dragon!) I agree, it’s nice to have labs that actually correspond to how you feel. Mine have been cold-stone normal since the day I was diagnosed. At least you’re able to try something new and fingers crossed that this does the trick. I’ve been on biologics for five years now and I know that many people have dreaded them, but they’ve been a blessing in my life. And Humira really isn’t bad, especially with the self-inject pens. I am doing well on Cimzia so far, but I hate their syringes. They have the biggest, dullest needles of any of the biologics I’ve tried and I’ve nearly tried them all. Please keep us posted.

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  5. So sorry to hear about your increase in pain. I hope the new med changes help. RA the hurry up and wait disease. I have always felt it is a disease that teaches patience. What choice do we have really.

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  6. Wren I’m sorry to hear your pain is increasing. I hope with the end of winter approaching we all get some much needed relief.

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  7. Sorry to hear it’s got ahold of you right now. Humira is my drug of the month for now. It’s not a miracle drug by any means however I’m still doing ok with it. I hope you can scare him back into his pit but he doesn’t scare easily. Hugs and best wishes.

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  9. That wasn’t bad poetry. That was wonderful poetry. I absolutely loved it!

    It’s really frustrating when doctors won’t listen to you, but wait for blood tests that may or may not confirm. I hope Plaquenil does the trick, but it’s not… Humira was my miracle. It could be yours, too.

    Keeping everything crossed

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