Not who. Just how.

“There is more right with you than there is wrong with you.”*

Sometimes I’m astonished by the deep wisdom I encounter when I read blogs written by people who have RA. Sometimes their words catch me with such suddenness that my jaw drops and I have to remember to breathe.

Lene Andersen is one of those bloggers. She’s the writer of the blog, The Seated View; her most recent guest-post at RA Central, “Staying Sane” is one of those jaw-droppers. In it, she writes about the pain and disability of rheumatoid arthritis: its capriciousness and relentlessness; its ability to stop us dead in the tracks of our lives; its effect on our emotions; and the terrible way it can send us to a dark place in our minds that makes our lives seem utterly worthless and worse, hopeless.

Yes, oh yes, I thought as I read the post. Lene’s RA is many fathoms worse than my own, but I know down to my toes of that which she writes. And like all of us, I live with the gnawing, low-grade fear that I, too, might one day be permanently disabled and sidelined by this disease. Lene writes:

“[T]his is what happens to you when you live in the equivalent of a disaster area, a situation where you never know if the sky is going to fall. The unpredictability of daily life with RA makes it really hard to look at the bright side of life.”

Amen, sister, I thought.

And then, without warning, she turns the course of the post around. Listen up: We absolutely must fight this RA-provoked descent into the dark.

“It sometimes takes a while, sometimes requires mental acrobatics worthy of a performer from Cirque du Soleil and every now and again, the grain of hope, of positive, of maybe that I find is logically ridiculous, a tortured Pollyanna moment, but that doesn’t matter. What matters is to find it, because it is that first step out, the first step to remembering that there is help out there, that you are not doomed, that you are not alone and that there is more than RA to your life.”

Amen, sister, again. I often feel like that tortured Pollyanna as I fight to put a positive spin on my RA. But the alternative is a terrible, tragic way to live.

Please take a few minutes and read Lene’s post at RA Central, and follow the links she embedded in the text, too. What she says there may give you the tools you need to get through this moment, this day, this month – this life – with joy instead of despair.

“RA doesn’t change who we are, it just changes how we do things,” writes Lene. And she is so right.


Yes, here I am, back again – and with almost the full use of my right hand restored. Talk about positive!

The hand surgeon was delighted, yesterday afternoon, with the way my dog bite wounds are healing.  He felt that the new wrist pain I was experiencing was directly due to my RA and the fact that my hand had been splinted for several days, held stiff in one position. And indeed, I thought so, too. It did feel more like a flare than anything else. The good doc removed the splint and, after a close inspection, re-dressed the wounds in much lighter bandaging without it and told me to get busy moving my swollen fingers. I was, and am, delighted. And as you can see, I’m following my doctor’s orders.

Unfortunately, the results of the blood culture had not come back for some reason. He was puzzled, said he’d check into the situation, and that he’d get back to me as soon as he had some information. Though he didn’t say – he was noncommittal, as doctors can be when they aren’t sure – that my rapid healing means no blood infection, I am feeling very well. No fever. No malaise. And even the wrist flare, which was pretty nasty last night, is a mere shadow of itself this morning.

Instinct tells me that my blood is clean and healthy. Nevertheless, I’m hoping to have it confirmed today.

Now, I’m off for another soaking session. I don’t mind. It gives me a good excuse to stop everything and read Neil Gaiman’s “Anansi Boys” on my Kindle for 20 minutes. Complain? Not me.

*Jon Kabat-Zinn, founder of the Center for Mindfulness in Medicine, Health Care, and Society at the University of Massachusetts Medical School.

8 thoughts on “Not who. Just how.

  1. I gotta go read that post!

    So glad that you are doing well, Wren! I hope your blood cultures come back a-ok! Take care, and indeed, keep enjoying a good soak and a read 🙂


  2. There you go bragging about your kindle again, Wren. 😉 (Birthday’s in June, so here’s hoping.)

    If it makes you feel any better, my first thought about hearing that your dog bit your hand was a pure selfish one. I thought: “Oh no, Wren is one of my favorite writers! She is certainly the most skilled of we RA bloggers. Noooooooooooo!”

    And then I remembered to worry about you. 😉

    But as a writer, I thought you’d see the compliment in my selfish tantrum.

    I am SOOO glad you are not hurt worse, but I am certainly praying you heal sooner than later (this time for you). And I will check out this article you mentioned.

    – RA SB


  3. good news on hand. wowzers to that spider…i would have just sold my house and moved if i saw that thing in my sink. great opening quote…i’ve always been glad that my “affliction” was RA and not, say, stupidity or callousness. in that case there would be way more wrong than right.


  4. So glad to hear your hand is well on the mend. I’m with everyone else on that spider. Yowza I would have been out of the house till that baby was removed by someone other than me.


  5. So glad you are having success with the hand healing. Good luck on the blood culture results. From what you report it doesn’t sound like there’s too much to worry about.

    Read the recommended post by Lene and I admire her spirit. I’m on the other side of the equation after 39 years. Lost my black sense of humor about it all. But that’s one reason I’m so glad RA SB is writing again. I have much in common with her point of view and her last post made me laugh out loud, something that doesn’t happen much anymore. Your comment made me laugh out loud too, Wren. I never expected you to type what you did and I hooted.

    But then there’s the other side of the coin. I have descended into the darkness, I lost my fight and the person, my Mom, who taught me how to fight. I’m in therapy trying to regain some sense of myself as a person instead of just a disease that just keeps brings on more diseases, syndromes and complications and now I head into ortho-land as the only solution left and it scares me. I don’t want the operations, although I’ve had minor ones, I’m afraid once they start there will be no end.

    Maybe I shouldn’t respond on blogs where people work so hard to stay positive, it’s not my reality anymore. I just never knew that I, someone who fought like hell to keep going, can just barely do it anymore. Then I remind myself that even my Mayo doc says he’s only seen one other case like mine and he’s been there 25+ years Guess I just hit the weird RA lottery.

    But I do admire all of you that fight the good fight, maintain a good attitude and write partly for the love of writing. That love was once my aspiration. I read you to remind myself there was a time when I knew how to cope about 75% of the time.

    Sorry for puking all over your post Wren, it just feels safe to do it here. I really do respect your writing and thoughts.


  6. Nanc- You have my express permission to say whatever you want when you comment on my blog; I don’t consider your comment “puking” in any way, shape or form. Instead, you’re very honest about your experience with RA, and that’s something that all of us can appreciate. And I respect your effort now to find the light you lost after many years fighting the beast. Losing your Mom … well, that’s simply awful. I’m so very sorry for your loss, and I hope that over time you’ll be able to make peace with it.

    I’ve never expected anyone who reads RheumaBlog to take everything I have to say to heart; we all have such different situations within our experience of this disease. You’ve been fighting for a very long time; it’s no wonder that you’re tired and dispirited. My wish for you is that your docs will find a way to help you feel better, resume as much mobility and freedom that you can, and that the glimmers of light you see now and then turn into sunny days.

    Thank you so much for reading my blog and for your kinds words. I’ve come to really look forward to your comments; they’re always thoughtful, and whether you realize it or not, they’re always comforting. Be good to yourself, OK? And do feel free to write me via email anytime. I’d love to hear from you. We can all use a good friend. 🙂


  7. Wren – Thanks so much for the safe harbor, it means a lot. I just don’t want to scare the newly diagnosed, I remember how frightened I was when RA first reared it’s ugly head. I honestly couldn’t wrap my 17 year old brain around the concept that I could be in a wheelchair at 21.

    Thanks for the invite to email, I’ll take you up on it sometime. I just feel a connection with your blog for some reason. It’s probably your attitude and style of writing. Wish we could sit down, have a drink and gab about the whole process!


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