RheumaBlog

Same dragon, different day.

You know how it is. Life is smoothing out a little. You’re feeling rather comfortable and maybe even a bit self-satisfied. Everything is looking up and under control … and then it’s not any of those things and you wonder if it ever was as you flounder around, trying to right the world again.

That’s me at the moment.

Let me just say, though, that at the moment, Mom is doing really well. She’s bright and upbeat. Her appetite is up, which means she’s eating a normal, nutritious diet in small helpings. (Honestly, I wish I could make myself eat the tiny portions of food she does. I’d not be Battling the Bulge all the time.) Her stomach has bothered her only intermittently since her hospital stay, and then only very mildly. Her energy level is pretty much what you’d expect for 79-going-on-80. She’s been seeing a chiropractor for her sciatica pain, and halleluiah, whatever he’s doing appears to be helping.

The only things that have happened during the last week that concern me are her memory issues and, now and then, a sudden exhaustion that comes over her from nowhere. She uses me as her back-up memory, which works pretty well, although I find it a bit ironic, as I’m not the safest bet. I’ve been the forgetful sort my entire life, you see. As an adult I’ve learned to compensate fairly well for what I think may be long-term ADD, but now I’m compensating for both of us. Oh, well. At least I’m experienced.

The memory issues and the exhaustion, I think, may be directly related to her intermittent slow heart rate. Mom’s been a go-go-go, why-do-it-later-if-you-can-do-it-now type her entire life. She berates herself in disgust when she gets tired—especially when she can’t find any good reason for it. As a result, she pushes herself hard and keeps flitting about.  Fortunately, I’m pretty much always nearby these days, so I encourage (read compel) her to take the occasional extended sofa-break.

Yes, boss.

But back to that first point, the one about just when things are going well, they go haywire. Mom’s chugging right along, but I’ve been pretty much stopped in my tracks since Saturday. That morning, my left shoulder and neck started hurting a little. At first, I shrugged it off (literally), thinking I must have strained a muscle in there somehow. I’d stripped the queen-sized bed for linen-washing, after all. Such a chore sounds non-strenuous, but maybe … Well, by mid-afternoon the little pain had grown into a big one, and I knew it had nothing to do with overzealousness regarding sheets and pillowcases. It was a rheuma flare. A nasty one. And as of right now it’s still with me.

It has stepped back a little, which makes me hopeful that it will simply go before too much longer. I haven’t been able to use my left arm much since the flare ramped up, so mostly I’ve been sitting quietly with either an ice pack or the heating pad pressed against the triangle that forms the top of my shoulder, my collarbone and my neck. I’m not really sure which joint is involved, as this flare is different than the other, more familiar flares I’ve had in that shoulder. There are two spots where the collarbone connects to both the shoulder and the sternum via ligaments, so perhaps the rheuma is attacking one or both. At any rate, the sudden, harsh pain and resulting disability really clipped my wings and, yes, sort of bummed me out.

This new flare makes me think that my rheumatologist and I need to reassess the usefulness of the three DMARDs I’m taking right now. Perhaps one (or all) of them are losing their effectiveness—as they do when it comes to autoimmune diseases. I’ve got an appointment with him on the 20th of this month, but I’m going to try to get in to see him sooner. This sort of flare, which is far worse than any I’ve had for quite a long time, is scary and portends nothing but bad news.

Along with the shoulder, my hands have been twinging madly and today, the bursitis in my hips is causing increased discomfort. Honestly, staying optimistic does get hard at times like this. I’m keeping at it, though. Our three cats—my oldster PIB, Mom’s sleek, black 18-month-old Kitty-Kitty and the newest member of the family, the kitten Emma—keep us laughing as they play, racing around the house, rolling around wrestling and, in PIB’s case, snoring with admirable determination. It’s been nice and warm but not horribly hot even this month, which is generally one of the hottest in California. And while I’ve had to set aside cooking, etc. for my aunt and uncle for the time being because of Mom’s illness, I’m looking forward to getting back to that this week (as long as she keeps feeling well). I really enjoy them and the work.

There are a few good things I’ve found about this new, debilitating flare. One is that it has forced me to appreciate more the milder RA I’ve had until now. Another is re-learning how to distract my mind from the pain. There was a time when I was really good at it, but I’ve gotten a bit rusty. And the last good thing that has been reiterated for me is that I can still smile and laugh and act with kindness toward myself and others, even when I hurt. It’s a good lesson, I think, and it makes me a better person.

Here’s wishing all of you a gentle, painless week, full of joy and satisfaction. Thanks for dropping in.

6 thoughts on “A little off plumb

  1. Cathy says:

    I am glad to hear your mom is back to eating well again. I am sorry to hear you aren’t feeling so well. 😦 I hope things turn around for you soon. You have taken on a lot of responsibility these last few months for a lot of people. Are you taking your rests too?

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  2. Polly says:

    Sorry things have taken a downward turn for you – but so glad your mum’s made some improvement. Everything crossed that they can get this slow heart rate things sorted for her and that’ll have a knock-on effect with the other bits and bobs … and here’s hoping the dragon crawls back into its cave VERY soon!

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  3. I am glad your Mom seems to be on the mend but me thinks your flare is from you doing alot more. I bet if you think about it, this flare from you know where coincides with your adding on responsibility into your life. Just remember, the meds can only do so much with ra unfortunately and we still need to balance the rest carefully. We need to find you one dynamite ra dragon slayer 🙂

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  4. carlascorner says:

    Oh, man, just when you thought it was safe to go back in the water. I hope this is nothing more than the old dragon reminding you he’s around and that he will soon settle down for a long, long, long nap. In the meantime, I’m sending healing thoughts your way.

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  5. Chelsea says:

    I don’t know how you do it Wren, but you always seem to hit the nail right on the head! If I could have, I would’ve written that post. Hope you and the doc will be able to figure something out and that things otherwise go smoothly with aunt and uncle. Remember to try and rest for yourself when you need to.

    I am off prednisone finally, but only for a month so far. Things were going pretty smoothly relatively speaking, but probably only because of all the long hot heat cap we’ve been under for so long. Now we’re getting more fronts coming through and my joints are really feeling it. I can tell that despite the change in my meds having gone so well, I still have some active disease going on now that these fronts are moving through. We’ll have to see what my new rheumy thinks, but not until November. I dread fall and winter coming without the prednisone but will try to stay off of it. I know some do better then with cooler temps, but I’m the opposite.

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  6. brilliantmindbrokenbody says:

    Good to hear your mother is doing well, sorry that the rheumadragon is biting you badly. My own maybe-rheuma flared up really badly after I went whitewater kayaking over the weekend, and I’m only just starting to get relief. When it was at its worst, I couldn’t even feel the difference when I took a percocet. Now I feel okay if I take the percocet and…uncomfortable…if I don’t.

    Of course, I’m going out on a boat and possibly kneeboarding and/or waterskiing, even though I know it’ll screw me up again. Ah well, how often do I get a chance to do this stuff?

    Here’s hoping that your rheumadragon goes back into hibernation and takes mine with it~

    ~Kali

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