RheumaBlog

Same dragon, different day.

For some of us, a sudden season of comfort has arrived, out-of-the-blue, unexpected, a daily, even hourly surprise.

I drew this using the free, online software drawing application called "Harmony." It's fun! You can find it at http://mrdoob.com/projects/harmony. Click picture to embiggen.

Cathy, Terry and Megan are all enjoying a holiday from serious pain these days. Others are, too. I am. It’s wonderful, but …

But? How in the world could I question an extended break from rheuma pain? Isn’t this what we all dream about? Shouldn’t I be thankful? Why do I need to whistle a little doubt into this delightful interlude?

But I am thankful. Look at me! I can move! I can pick up a heavy pan with just one hand and move it confidently from stove to sink! I hardly think about it. I roll out of bed in the morning and hit the floor running, no laying there for a while working out how stiff I am or what parts of me are too sore to move just yet. In the shower I raise my arms smoothly over my head and scrub shampoo into my hair with fingers that don’t twinge and ache. (I’d sing, but freedom from pain doesn’t mean I can suddenly carry a tune. I’m not expecting miracles, for goodness sakes.) I dress, do chores and walk freely, easily, my body moving as it was made to move. How very strange. Hips. Knees. Ankles. Toes. No hesitancy, no caution necessary.

Painkillers? I don’t need no stinkin’ painkillers! No Tylenol, no Tramadol, no Vicodin. The little bottles sit untouched in my medicine cabinet, hoping to grow cobwebs.

I whisper, “This is good.”

Sure, I’m taking my other rheuma drugs, the ones that “slow” the disease’s progression and “reduce” inflammation. But in the past, taking them didn’t erase stiffness, pain or fatigue, which meant that the rheuma was still active, my joints still inflamed and reacting to the insult. I was bummed. Still, my doctor assured me that in spite of my sore hands and wrists, my blood tests showed that these powerful drugs were doing the job promised. Good sulfasalazine. Good Arava. Never mind the hair loss or the lack of a good defense against infection. Minor annoyances, worth the drop in my sedimentation rate.

My doc is on my side. I have to believe him. He’s my strongest ally – perhaps my only ally – in my forever battle against the rheuma-dragon.

And now today, yesterday, the day before. No pain. The mind boggles.

Another of my Harmony drawings, using the mouse as a pencil. I'm hooked.

Deep down, I know why I distrust this sudden, if positive, change. It’s because there’s a word I want so much to use – remission – but I’m afraid to use it. Because of my past experience, for me remission means no RA symptoms for an extended – really extended – period of time. Not days. Not weeks. Not even months. No, for me, remission means years. Many years of life without any kind of rheuma pain, mild, moderate or severe. It means being able to say “zero” to the pain-scale question when the nurse calls me in for my pre-appointment assessment. It means living, moving, being, without pain.

I’m afraid of the word because I know that remission is exceedingly rare in rheumatoid arthritis, even though our doctors like to use the word as the proverbial carrot on a stick. I’m afraid because I once experienced a very long remission – so long that I almost forgot I had RA – only to have it fall apart as the dragon woke suddenly, stretched, discovered he was ravenously hungry and started attacking and biting me again.

Remission? I’d rather have a cure, if you don’t mind.

But you know what? I’m going to shut up. I might not believe in remission any more than I believe in the Tooth Fairy, but I’m not going to complain about my current lack of rheuma pain. I’d rather celebrate it, enjoy every minute that I can get that comes without pain. I know it will be back, probably sooner rather than later, but I’ll deal with that when it comes. For the moment, the dragon is slumbering somewhere deep inside me. I’ll whisper so as not to wake him as I delight in the little things, like making my bed without grimacing, without muttering “ow!” and bluer words beneath my breath as I tug up the sheets. Like enjoying how it feels to walk on the smooth soles of my feet, feet that suddenly have no sharp gravel in them, no throbbing pain with each step.

I can’t help but wonder why the pain is gone. Is it the weather, which is finally becoming summer-like as the Solstice approaches? We’ve had a nice little run of sunny and mostly-sunny days here, with temps in the mid-70s and 80s. No drastic barometric swings, no chilly rain or oppressive heat. Just nice. Sort of like remission…

I’m in good mood. I’m happy for my friends, here in the RA blogosphere, who are also free of debilitating pain at the moment. I hope we all get a good, long holiday. And I hope that those of you who are still battling your dragons minute-to-minute will also get a break real soon. A nice, long breather. Time to rest and recoup. Time to laugh out of joy, not just to cover the pain and keep up the tough image to family and friends.

Just simple, pain-free time. I think we deserve it.

12 thoughts on “Harmony

  1. awamiba says:

    I am so happy for you, Wren! That’s great news! 🙂

    Having tried drawing with Harmony, I must say you have a lot of talent with drawing. 🙂

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  2. Kris says:

    Dear Wren, so happy to hear it! My dragon is only taking vicodin-induced catnaps at the moment, at least he will take naps and give me a few functional hours at a time. And your post gives me hope, hope, hope! Something that has been in short supply around here for the last few days as I’ve finally come to terms with how much I really hurt. Finally made the decision to hire some cleaning help so that on those good days I can do something I love, not just become overwhelmed at how bad the house is. An incredibly hard choice for me emotionally. But it’s the right choice for me for now. I start Humira in two weeks and am hoping it will be the silver bullet that knocks this dragon DOWN! Best wishes, Kris

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  3. Stephanie says:

    Wren, I hope you get a lifetime holiday 🙂 Enjoy it, because you deserve it! I have to say, your pictures are beautiful, and I love the word “embiggen” 😀

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  4. Joan says:

    Wren, I am glad your dragon slumbers. I hope he never wakes. Mine is sleeping lightly, lulled by MTX. But the MTX grew dangerous for me and I had to change my arsenal. I hope it put the dragon into a deep coma. =)

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  5. Jules says:

    Congrats Wren! I hope this lasts a long, long time for you. ❤

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  6. ValleyWriter says:

    Enjoy every last moment – you deserve it!

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  7. Chelsea says:

    I wish I had the confidence in moving those heavy pans! At least I have my splints. I know it could be worse, but I know we all wish/hope for better regardless of where we’re at with it. I hope yours stays in a forever coma! Hmmm, maybe Logan left you with a few beneficial anitibodies, or all those antibiotics helped. You do draw beautifully. And photographs too!

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  8. Cathy says:

    Oh Wren, the pictues are absolutely beautiful.

    It is funny how we don’t quite trust this good feeling. I feel the same way. But, if it is here, we must take advantage of it and enjoy every minute. Yesterday evening after sharing my good news with everyone I started to have more shoulder pain than I have had lately (better this morning) and my daughter said, “That’s okay because at least you had one whole month of feeling good.” That is the right attitude – not expecting to have it all for forever but appreciating it when you have it. I have so much to learn from my daughter.

    Enjoy the beautiful weather and thanks for being you.

    Cathy

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  9. rositta says:

    And the drug is??? Having just had a hip replacement and being on blood thinners for a few weeks, I’m forbidden to take Ibuprofen, Aleeve, Voltaren etc. I’m suffering right now and don’t know how to make it stop. I am happy for you that you are having a pain free time, tell me the drug please…ciao

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  10. Chelsea says:

    O.k. spill the beans as to the antibiotic. Did you or Warm Socks see this one:

    From Rheumatology journal current issue:

    Distinct bacterial colonization patterns of Escherichia coli subtypes associate with rheumatoid factor status in early inflammatory arthritis
    Wednesday, June 16, 2010, 5:07:03 AM | Newkirk, M. M., Zbar, A., Baron, M., Manges, A. R.
    Objectives. The aetiology of RA is unknown; however, bacterial exposure, particularly to Escherichia coli, Proteus mirabilis and Klebsiella pneumoniae, has been linked to disease pathogenesis. The strongest association was observed for RF+ RA. We compare colonization patterns of these bacteria, and the anti-bacterial antibody levels in early onset RF+ and RF– inflammatory arthritis.

    Methods. Bacteria isolated from stool and urine of early-stage RF+ and RF– patients recruited to the Early Arthritis Registry were biochemically identified and genotyped. IgM and IgA anti-bacterial and RF antibodies were assessed by ELISA.

    Results. Differences in the types of colonizing pathogenic E. coli were identified. RF+ patients were more commonly colonized with phylogenetic Group D E. coli, whereas RF– patients were more commonly colonized with phylogenetic Group B2 E. coli and these individuals also had lower joint scores and inflammatory markers yet higher IgA anti-E. coli antibody responses.

    Conclusions. These studies link the type of colonizing bacteria in the gut and urine with the immune response (anti-bacterial and RF) in early-onset inflammatory arthritis and provide evidence for a role of the host–pathogen response in the aetiology of RF.

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  11. Squirrel says:

    That’s brilliant news 😀

    My friend’s mum had RA, and I really mean ‘had’ because her symptoms lasted about 2 years and then disappeared, this was 23 years ago. She’s SO lucky. Her grandmother was crippled by it so she must’ve been terrified.

    Anyway I digress.. I’m really happy for you, I’m happy that it CAN happen. I’m feeling good too, not perfect but almost. I hope it lasts the summer! Take it easy.

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  12. WarmSocks says:

    Wonderful news! I’m glad to hear that you’re feeling so well, Wren. That’s fantastic. Those are pretty good drawings, too. I’m impressed.

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