You know, I hate not knowing.
I’m just about the most curious person I know, and I like to know. I like to know everything that I can know. Searching for answers gives me joy. When I find them, when I know … well, I just love that. I love knowing.
But there’s one big thing in my life that I don’t know. I never know. Even though I’ve searched and searched for answers, I just don’t know the answer to this one.
OK. By now you’re grinding your teeth. Come on, Wren! you’re muttering. What is this thing you don’t know? Tell us, already!
I don’t know when my RA will flare up.
I don’t know if my next flare will be a doozy or the kind I can shrug off. Sure, I know what causes the flares. I mostly know what to do about them, or, at least, how to treat them. Heat, ice, painkillers, range-of- motion exercises, distracting activities like reading or writing or listening to music. Easy-peasy.
And I don’t know when the flare will come. Will I wake up with it? Will it hit while I’m at the grocery store? While I’m pushing my uncle in his wheelchair around the VA hospital? When? Come on. I wanna know!
I don’t know which joint (or joints) will be affected, either. Will it be my right foot, while I’m driving in heavy traffic? My left hand, while I’m writing on deadline? (I’ve had nightmares for years about that one.) Will it be one shoulder or the other when I’ve got a busy day looming, full of errands and responsibilities I can’t reschedule or cancel without causing myself or others a lot of trouble?
That’s the thing about rheumatoid/autoimmune/inflammatory arthritis. You just can’t know. You can’t know when the flare will happen, which part of your body will hurt like a you-know-what, and you can’t know how long it will last. A few minutes? A few hours? Several hours? A day? Two days? A week?
And finally, I don’t know what other people think about me when I gimp on the left foot one day, the right foot the next. And when they see me again, it’s my hand that’s bad. Anyone who knows me also knows I have RA, because I’ve had to tell them why I was disabled that way yesterday, this way today, and maybe that way tomorrow.
But I still wonder if they think I’m faking it, just for the attention (a worry that makes me cringe.)
I just don’t know.
Well, I’ll keep looking for the answer. I really, really want to know.
Actually, like most people with RA I guess, I wasn’t grinding my teeth and thinking ‘Come on Wren …’ I was thinking, ‘It’s when will her RA flare’! Yes, it is ONE of the worst things about RA I think – and certainly one of the other awful things is that feeling of ‘They think I’m faking it’. With my colleagues I take time to explain to them … and then re-explain to them when it clearly has’t sunk in … but you can’t do that with people you just see in shops regularly or in the street! Or people who just happen to work in the same building. Grr is right!
I think it was those others–the casual acquaintances, people who work nearby–who I was thinking of. You see them frequently, but don’t generally stop to talk. I know if I was them, I’d wonder about that woman who limped on different feet all the time… 😉
Hope you’re feeling good, Penguin. Stay warm!
I so agree with you! It would be nice if RA would say, “ok, flare next Tuesday affecting your arm joints” or something similar. It’s the not knowing when or in which bit that drives us all crazy I think. As for other people, I’ve given up caring what they think. The people that love me know and that’s all that matters.
Hmm, yes, I’ll just schedule my next flare for tomorrow afternoon, 3 p.m., just a medium-sized one. And let’s see… it will last until 5. Yes … 😉
Welcome back, Amanda! I’m glad you stopped in.
I suppose one of the biggest and hardest challenges fpr us who live with a chronic/autoimmune diseases is to enjoy a calm existence in the face of a potential flare up anytime. Don’t think I have mastered the art but whenever I book a flight, hotel accomodation or an expensive ticket I take out cancellation insurance. However, considering the amount of times I have had to cancel stuff I am beginning to wonder whether there is a corellation.
One thing I do know is to not take a good run for granted. As I did for most of this year until I got my flu shot. Which I have had every year without a bother AND I used to think that all these reports on flue vaccine causing flare ups were anecdotal or imagination. Oh dear, life is full of lessons.
As for what others think, tough luck. I just smile when I am told how well I look and only sometimes when I am in a really foul mood I start my little lecture on how cortisone makes the skin so nice and smooth or mention some of the drugs as a by the way. But I only do this when I want to be mean. Mostly, people are very understanding and if anything over careful and considerate.
I hope things are not too hard for you at the moment.
Guten Tag, Sabine!
Maintaining day-to-day calm and quieting irritation and anger are indeed some of the most difficult challenges any of us coping with autoimmune diseases face. What astonishes me is how WELL we do it, most of the time.
Thank you for reminding me not to take things for granted. Like everyone else, I tend to do that until a bad flare hits. THEN I appreciate things a little more.
I hope you’re feeling better and that you enjoy the holiday.
Frohe Weihnachten und glückliches neues Jahr, Liebe Sabine!
I couldn’t agree more! I love knowing too – and sometimes it isn’t helpful for me to know too much (i.e. about drug side effects etc.) and it would be better to be blissfully ignorant about what could happen. So true about RA affecting the body differently on different days – yesterday I was hobbling on the left foot and today it’s the right! I think dealing with the uncertainty is one of the toughest parts of having RA, and the part that’s hardest for other people (who don’t have RA) to ‘get’ too. One day I might be ready to go out and socialise, the next I’ll just feel like hibernating. Thanks for this post and I love the snowy background!
Hi, Fran! Thanks for your comment. It’s good to know that so many other people with RA understand exactly what we’re rattling on about, isn’t it?
The snowfall is fun–it’s a yearly Christmas gift from WordPress. 🙂
Great post, Wren. Inquiring minds want to know!
Thanks, Irma. Haven’t heard much from you lately. I hope all is well and that you’re feeling good. 🙂
It is such an unpredictable disease – the only comfort I get is knowing that. 🙂
Hi, J. Yes–at least these days we have a wealth of information about autoimmune arthritis literally at our fingertips. It’s good to be informed. Here’s hoping that you’re feeling well and enjoying the holidays.
I hate the curiousity around when the next flare will come! I like surprises but flares aren’t exactly fun surprises. But I do love the surprise of waking up and discovering the worst of the flare is over. 🙂
Oh, yeah. Isn’t that a good feeling! Thanks for stopping by, Elizabeth!
Lene of The Seated View uses dictate software to be able to write (can’t remember which offhand). Have you considered that Wren?
I am so glad I don’t have RA – for most people with PMR there is one primary cause of a flare: trying or being encouraged/forced to reduce the pred dose too fast or too far. If you don’t take pred it hurts and you can’t move as well as probably feeling ill. Take pred – it’s a miracle. Trouble is – docs don’t quite get it and think it works like a taper and tell you you will deconstruct if you take pred for long so you MUST take less and less. If you have a flare it’s there until you take more pred – it could be YEARS before it goes away on its own.
So at least I suppose PMR is less unpredictable than RA. Which is a nice thought – I think!
I think Lene uses a version of Dragon, which I understand is improving with each new upgrade release. I’ve thought about it a bit, but so far, my sore hands haven’t actually brought my writing to a halt. You know how it is: procrastinate until a crisis hits. 😉 I have no doubt that one day, I WILL be using voice-recognition software to write. It sounds strange to me–such a different way to go about it–but according to Lene, once you get used to it, it’s great.
As for the pred: I’m sorry that you have to take it all the time. It’s such a Dr Jeckle/Mr Hyde drug! It works, but the cost is (or can be) so high. Do you take other meds for your PMR?
I hope this finds you feeling well, Eileen. 😉
There is nothing besides pred – various immunosuppressants are touted as “steroid sparers” but they don’t replace it despite what all too many docs think. The level of ignorance amongst the medical profession is scary. They have no idea where it comes from – so no signposts for a way to deal with it. Untreated and severe it is as bad for pain as RA – except there is no joint damage – causing stiffness and bursitis/tendonitis/synovitis. Nastiest of all is the risk of progressive vasculitis – leading to far worse things (dissecting aortas and stuff) and knowing that means that, for me at least, pred is a wonder and if I get fat – that’s better than the options! Which may never happen but who knows? Which is the point isn’t it…
I would love to know. The other night I woke up with some serious foot pain. It took me a day to figure out it was a flare. I never have ra foot pain. I was grateful it only lasted a day.
Wishing you a lovely flare free holiday.
Thanks for the kind wishes, Mary–and same to you, too! I hope that your rare RA foot pain STAYS rare!
Funny how we tend to think up other reasons besides RA for pain, isn’t it?
Hi, Wren. I loved your comment about knowing.
Had to steal it 🙂
Love your blog.
Thank you, Jindra. I hope you’re feeling well and enjoying the holiday season. 🙂
Great post Wren, you have put into words exactly how I feel. Right down to the part about different areas being affected and wondering if people think I’m faking it. Not that I care much about what anyone thinks anymore, but I still wonder sometimes. Wishing you and your family a Merry Christmas!
Thanks, Terry! You know, I’ve battled this beast for so many years that caring about what others think shouldn’t be an issue for me anymore. But sometimes, it still is. Maybe that’s just part of being human. We’re tribal creatures at heart, and we don’t want to show any weaknesses or be “different” than our fellow tribe members. An anthropologist would be able to explain it, I’m sure. 😉
I hope you and yours have a great Christmas, too. Stay warm!
Liebe Zaunkönigen! Stay in that questing mode, it’s good for the mind. Wanted to flutter by and wish you a Happy 4th of Advent und ein wunderschönes Weihnachtsfest! Ach, und auch ‘n guuuuute Rutsch ins Neue Jahr!!
Danke, Liebe Rouchswalwe! Frohe Weihnachten und glückliches neues Jahr! 😀