Posts Tagged ‘Flaring’

Wanted: Pain Whisperer

Friday, October 4th, 2013

Whisper-in-ear

I had an interesting appointment with my rheumatologist recently.

I have a standing lab order at LabCorp; my doctor renews it every six months. (I get blood drawn every six weeks.) Several months ago, at the beginning of a new six-month period, I noticed that the lab technician only drew three vials. (Usually it’s six or so.) So I asked, and it turns out that my doctor dropped several tests on my most recent lab order. Right now the only tests being done are the CBC and two liver tests (ALT and AST). The ones that have been dropped include things like sed rate and CRP. So, as I understand it, I’m mainly being checked for damage from medications – not for any of the markers that indicate inflammation or give an idea of disease activity.

So at my last appointment, I asked my doctor about this. He said that he doesn’t find the blood numbers particularly meaningful, and that he believes that patient reports are a far more important indicator of disease activity. (He does have me fill out a detailed questionnaire every time I come in, and he always does a joint exam.) “You are your own best sed rate,” he told me.

“But I’m not always sure that I really know how the disease is doing,” I said.

He smiled at me. “Oh, I think you do.”

I have my doubts about this. On the one hand, I think it’s great that he really listens to his patients. I know that it’s a very bad thing when the opposite occurs. (Kelly at Rheumatoid Arthritis Warrior has written about this a lot.) But I also hear other RA patients talking about things like the Vectra DA test. I also know that disease activity can continue when symptoms are quiet – I’ve even heard stories of people who thought that they were in remission while serious damage was happening underneath their level of awareness.

There’s another problem with this, too. I have always had trouble interpreting my own pain. I’ve never been athletic, and when people talk about the difference between “pain” from injury and the good “soreness” from exercise, I have no idea what they mean. Even long before the RA diagnosis, I always had trouble with this distinction. Once the RA came along, it got even more complicated for me – is this a flare? Muscle pain or joint pain? Is it the exercise or the RA? Is it caused by stress or depression? Sometimes, especially if I haven’t gotten enough sleep, everything seems to hurt, even though a joint exam and bloodwork show no problem. Other times, I have such a high pain threshold that I don’t even notice it. I once walked around for two weeks on a sprained ankle with no idea, simply because I had gotten so numbed to RA pain that the injury didn’t even register.

Do any of you have this kind of “pain-deafness,” or am I unusually out of touch with my body? I wish I had a Pain Whisperer – someone who could tell me, “This is from the RA.” “This is normal muscle soreness from exercise.” “This is because you hurt yourself.” Someone who would always be right, who wouldn’t miss anything. (I’m thinking back to the many alternative-medicine practitioners who got it wrong during the months before my RA diagnosis.)

In the meantime, I don’t know what to make of this change to my lab work. I’m suspicious because of the timing. I’ve noticed a lot of changes (almost all negative) in the way my insurance handles things since the new year. Right now my Remicade infusion has been delayed because of one of these insurance changes (a subject for another post). So I have to wonder – is this an economic decision? An insurance decision? Or is this how my doctor really feels?

Now I wish I had a Medical Practice Whisperer.

Edit: I just read this post over at Pollyanna Penguin’s blog – seems I’m not the only one with this issue! And I was also reminded of this 2009 post at Carla’s Corner – funnily enough, I see that I commented on it at the time! Guess this is a long-standing issue for me!

The Stress of Wellness

Thursday, March 22nd, 2012

A strange topic, I know.

I was doing very well for the past several months. It was starting to look very much like remission. I was able to go out and have fun with friends, to enjoy playing with my son, to go for long walks. I was even able to get back to Irish dancing, something I had to give up when I first got diagnosed. I experienced bursts of creativity the likes of which I haven’t had in years.

And you know what? It stressed me out.

For years, I’ve been telling myself, “If only I didn’t have RA, I would do this and this and this and this…” So eager was I to get back to “my life” that when I finally hit a point where it looked like I could, I was overwhelmed. So many possibilities! So many choices! So much pressure to seize the day, to make every beautiful pain-free moment count.

I danced, I sang, I played the piano, I fiddled around with my guitar, I jammed with a friend, I contacted old friends, I hosted a game night, I took long walks, I got errands done… And every night I lay awake, unable to relax, riddled with anxiety.

When you have RA, you know that there isn’t a cure. You know that the good times may not last. Sure, some people have remission that lasts for years. Still, even these people can wake up one morning, suddenly unable to move. I know one woman who had a 25-year remission, and the beast still came back. I’ve also seen this theme showing up on a lot of the blogs I read lately – people whose periods of remission, or something like it, have come to an abrupt end.

Anyway, it may be coming to an end now. I’ve been in something strongly resembling a flare for the past two days – low-grade fever, extreme fatigue, trouble walking, a big ganglion cyst on my left wrist. My interstitial cystitis, too, has been miserable after a very long period of quiet. I had to miss dance class tonight, to my heartbreak. I am hoping that this is just a bump in the road, that it will pass and I will get back to the state I’ve been (sort of) enjoying for the past few months. Stress or not, it has been so wonderful just to feel good.

Hard to say if it’s a flare, because there are other things going on – for example, recent lab tests showed that my adrenal insufficiency has returned with a vengeance, and I know that this can sometimes cause symptoms very similar to those of RA. (More on all of that in another post.) Either way, I’m no longer well. Maybe, oddly, this will relieve some of the stress?

Nah, maybe not.

Nope.

Sunday, September 19th, 2010

I’m sorry it’s been more than a month since I wrote.  It’s been a tough time and I’ve been very sad. 

For those of you who were left hanging by my last post, the doctor declared it not remission, but a “near-remission experience.”  My bloodwork did look great, and my symptoms were on the whole SO much better, but joint examination showed that there were still just a few joints that were in a state of active inflammation.  That’s still great, amazing progress for me, and we were both in a very hopeful place.

Then the flare hit.  It began with an IC (interstitial cystitis) flare that wouldn’t get under control and soon triggered a full-on RA flare.  Fevers every afternoon, swollen fingers and knees, brain fog, exhaustion, the whole nine yards.  It’s far from being the worst flare I’ve ever had – the IC was actually much more difficult and painful to deal with this time around than the RA – but it’s not a good development.  Whether I got rundown from the IC or from stress (there’s been a lot of it lately, which I won’t go into) isn’t clear, and maybe isn’t even important.  The point is that I’m back in a bad place now.  I’m also back on prednisone, which I worked so hard to eliminate.  This really broke my heart, especially since it’s not a good step in the battle against adrenal insufficiency, which I was winning beautifully.  On the bright side, the adrenal problem was really caused by long-term daily pred usage.  Since this is intended to be a short-term pred taper, and since my adrenals have recovered almost completely, it’s not likely that it will trigger the same problem again so quickly. 

My Remicade infusion is on Thursday, and I hope it will quiet this down.  I also had labwork done on Friday, so we’ll see if it shows anything new, and talk about medication changes if it does.  In the meantime, I guess all I can really do is hang on.  I’ve been here before, and I can do it.  I’m just disappointed.

Musical Interlude

Sunday, May 16th, 2010

CB0629294

It’s been awhile since I wrote a new song.  The last few months have been especially rough - flares, low energy from the adrenal problems I’ve been having, exhaustion and discouragement and malaise.  So I figure, why not make something creative out of it? 

I had some trouble coming up with a title for this one.  It was originally called “Flare Song,” because that’s what it’s about.  Right now the working title is “Hit The Ground,” but I’m not sure about this one either.  Suggestions? 

***Update – I have changed the name to “Easy.”  Thanks, Lene!  This was one of the titles tossing around in my head, but when someone else said it, it just clicked in.

This also marks the debut of Little Martin!

Get the Flash Player to see the wordTube Media Player.

Her Diamonds

Friday, April 2nd, 2010

“Her Diamonds” is a song by Rob Thomas, written about his wife’s struggle with an unnamed “lupus-like” autoimmune disease.  I first discovered this song back in July by reading Rheumatoid Arthritis Guy’s blog, and was impressed at how well it captures the essence of a couple living with a disease like this.

So why do I bring it up now?  I’ve been going through a rough time physically, and strangely enough, this song has been following me around.  After a long period of not hearing it anywhere, it suddenly seems to be everywhere, and appears at times when I’m having particular trouble.  I was driving home from a difficult and painful bodywork session when it came on the radio, and I pulled into a parking lot and cried.  Then on another day, I was in the drugstore filling a new prescription, which felt like a defeat since I’ve been trying to reduce meds, and there it was again.

Rheumatoid Arthritis guy writes about it here, and he also includes a video that shows the words to the song if you’d like to read them.  But I want to show you the other video, the “real” one.  To me, it seems to capture perfectly the feeling of being trapped inside a body wracked with pain and fatigue. 

YouTube won’t let me embed it, unfortunately, but here’s the link:

Her Diamonds

The Acceptance Experiment

Friday, March 19th, 2010

Bunsen-Beaker-web

I was feeling tired and fed up last week.  I felt that my world was getting smaller all the time because of this stupid RA, and I was sick of it.  Then I read this post by Rheumatoid Arthritis Warrior, and I could really, really relate.  I would have loved to just press that eject button RA Warrior described – just quit the whole damn thing – but, of course, I couldn’t do that.  Still, I needed a break, and badly.

So I started thinking about what kind of break I could take.  I’ve done the Denial Experiment before – the one where I decide that for a week, I will just act as if I don’t have RA and live life like a normal person.  Well, that one never lasts long – by about the third day (often even sooner), my body lets me know that it just ain’t gonna happen.  So what could I do instead?  And exactly what kind of break did I need?

I thought about the things that were bothering me most, and the main thing that jumped out at me was this: RA had become the central fact of my life.  When I wrote about my world getting smaller, one of the things I said was that I no longer had anything to talk about with friends except illness, and that illness just isn’t that interesting a topic to most people.  Also, I know someone who talks about nothing except her aches, pains, and health problems, and I can’t stand to listen to her.  She’s never happy, never positive, and never interesting.  I don’t want to be her.  But lately I have become exactly that person.  (My husband kindly points out that no, I haven’t – the person I’m describing complains but never does anything to try to make it better, and keeps putting off surgery she’s needed for about three years now.  So okay, I’m not EXACTLY the same as her… but still.)

So I decided that RA was just plain getting too much airtime in my life.  My husband agreed that we seemed to spend most of our time talking about it and almost nothing else.  I was getting tired of listening to myself sound whiny.  I was spending too much time every day reading RA blogs and discussion boards.  I was feeling exhausted and burned out and didn’t want to post on my own blog.  I just needed a mental break from the subject of RA.

Here’s what I decided to do:

If denial didn’t work, maybe acceptance would.  Just for a week, I would behave as if I had already reached the acceptance point, and RA had become an integrated part of my life.  I would take my meds every day, do the things I need to do to take care of my health, not push myself too hard or pretend I didn’t have RA.  But I would also stop talking about it.  If I had a bad flare, I would tell my husband that I wasn’t doing well and would ask for help, but then I would stop complaining.  If I talked to a friend and they asked how I was doing, I would give a very short, honest answer like “About the same” and then talk about something else.  I would also stop reading RA blogs and boards, just for a week.  It would be, I hoped, like hitting a reset button.

So how did it go?

First, I learned that I really do complain a LOT.  Complaining words were on the tip of my tongue way too often.  So I think it was good for my marriage and my friendships to cut back on this.  

But it was hard, too.  Really hard.  Three days in, I had a day when I was in a lot of pain, and I didn’t say anything.  By nighttime, I ended up crying.  (I rarely cry.)  My husband gently reminded me that the idea of the experiment was not to pretend I was fine – it was okay to say that I was in pain and needed help.  So I did, and found that saying it once was enough to get what I needed.

I learned that I really DON’T  have enough other things in my life.  It was hard to find things to talk about.  It also felt good when I actually did find topics, and my husband and I had better conversations this week than we have in awhile.  We both really needed to talk about something else, and I think we still do. 

Another discovery was that I really, really, REALLY missed the RA blogs and boards.  They have become a big  part of my life, and cutting them off left me feeling isolated and sad.  I do think that I’m on the computer too much, and that I need to cut back, so I really shouldn’t be checking them as often as I do.  But they serve an important function in my life.   

I’m still not sure exactly what I learned.  I felt both better and worse this week as a result of pushing RA to the background.  I guess the main lesson was one of moderation.  I need the RA online community, but I don’t need to check for new posts several times a day.  I need to vent, but not all the time.  I need to be honest and speak up when I am having trouble, but I don’t need to repeat it over and over.  And when I’m burned out and need a break from the whole thing, the Acceptance Experiment seems to be a better choice than the Denial Experiment.

Wagon Train Part 2: Let’s Get Physical

Tuesday, December 15th, 2009

In an ironic twist, I have fallen off the wagon-circling wagon.  There are reasons for this, which I may get into in another post.  But for now, I’d like to jump back on and talk a little about my next set of wagons – physical activity.

Exercise is a seriously tricky proposition for a lot of people with RA.  On the one hand, we know that it’s a really important part of maintaining joint health – sometimes it very literally is “move it or lose it.”  On the other hand, when the joints are in flare or already damaged, things can get dangerous.  Another annoying thing about RA is its changeability – the line between just enough activity and too much is razor-thin and seems to move around all the time,  making it hard to stay consistent.  At least it sure works that way for me, and for a lot of other RA folks I know.  So I have to admit that after going SPLAT a few too many times from overdoing, I have erred on the side of doing… well, nothing. 

(Sheepish grin)

I was going to write a somewhat lengthy post that covered all of these different thoughts I’ve had about exercise over the years, but I’m really tired today and so I will get right to the point, which is my plan to change this.  I’m realizing that as time goes by, I’m getting weaker and have less and less energy, and that I’m beginning to have new muscle problems in addition to my usual joint problems.  While I do realize that my illness has a lot to do with this, I want to be proactive about the parts I might be able to influence.  I also want to model something better for my boy than a sedentary lifestyle.  So here are the wagons I plan to start circling:

Wagon #1: Water exercise

Esther WIlliams

(Okay, so I may never be Esther Williams, but I think the picture is cute!)

A long time ago, my rheumatologist said that swimming would be good for my joints.  Problem – my “swimming” is really more like “trying-not-to-drown.”  So then he suggested low-impact water exercise – for example, the Arthritis Foundation Aquatics Program (AFAP), which offers gentle range-of-motion exercises for people with all different forms of arthritis.  I learned that it was offered at several different local YMCA’s, as well as a few other places.  Around the same time, my husband and I thought that it would be a good idea for our son to take baby swimming lessons.  One of our friends had taken her son to the Y, so we checked it out.  And then, in one of those beautiful events of synchronicity that makes you think things are meant to be, we saw it:

AFAP class and Infant Swim, Saturday mornings, same time, same pool.

So off we went on Saturday mornings for a little family exercise.  At first I felt a bit ridiculous, since I was by far the youngest person in my AFAP class.  It was a little awkward explaining to people why I was there, since most of them were osteoarthritis patients.  But it didn’t take long to get comfortable, and I really enjoyed the sensation of being in the water, which is kept at a soothing 90 degrees.  And it was so sweet to look across the pool and see my baby splashing away in my husband’s arms, loving his swimming class.  He was a natural water baby right from the start.  Sometimes he would catch sight of me, and I could see him laughing and saying, “Mama!”  The little old ladies in the class loved seeing him, too.  And I liked knowing that his father and I were being good models for him.

Unfortunately, I had to stop going to class for a loooooooooooooong time because of problems with non-healing wounds and repeated infections – a really unpleasant story I won’t share here right now.  (Fun times, let me tell you - aren’t immunosuppressant meds great?)  Then we just got busy and involved with other things.  But two weeks ago, we decided to start going back.  This time we joined the Y as a family (we were guests before) as part of a bigger commitment to exercise.  The AFAP classes are free to Y members, and the Y also offers free childcare to members while they are working out, so I would like to start going more than once a week.  (That’s if my son, now a toddler, will cooperate with the childcare thing – something we are working on.)  I’m also encouraging my husband to start swimming during the week - he likes it and hasn’t done it in years.  And we’ll keep up our family Saturdays, which are good for all of us. 

Well, I was going to write more – there are at least three more wagons in this particular part of the circle – but to tell the truth, I’m in a lot of pain today, and I’d still like to get something posted.  So I’ll sign off here, and tell you about the others when I’m able.

Circling the Wagons

Wednesday, December 2nd, 2009

circlethewagons

Lately I have fallen off the wagon.

Actually, I have fallen off several wagons. Which, come to think of it, may be part of the problem – with RA, there are just so damned many wagons. So many little things that need to be done every day to stay healthy, stay mobile, stay active, stay positive. It’s hard to keep track of all these things, and easy to forget them. When I’m flaring and the brain fog descends, it can become almost impossible.

There’s also an element of rebellion here. I resent the fact that my life has become so structured. I was a random kind of person before I had RA. Not that this was a good thing, but in my mind, it went with my identity as a musician. Keeping strange work hours that changed from day to day, grabbing food on the run, being a night owl, being able to sustain long obsessive bursts of creative activity… I miss these things, even if they weren’t necessarily the things that make a healthy life.

In old Western movies, people would circle the wagons to protect themselves from outside attackers. Well, the RA and its related problems have taken advantage of my lapses and have been attacking again. It’s time for me to circle my wagons – but first I should take a look at what they are.

So the next few blog entries will probably be my wagon train – a description of all the different things I do (or don’t do) to stay well. Instead of focusing on how I’ve fallen off of them in the past, I’d like to picture them circling, protecting me. Instead of seeing an endless string of one wagon after another, I’d like to see them as a unit, all parts of the same whole.

What are some of your wagons, and how do you keep yourself from falling off?

Please stand by…

Sunday, September 27th, 2009

ColorBars2

Just popping in to say hello… I don’t want to abandon my blog!  I have a lot of things I want to write about these days – thoughts on living healthier and better with RA, thoughts on music and identity, questions I’m having about my approach to the disease, etc. etc. etc.  But the truth is, I’m feeling pretty terrible, and can’t seem to bring myself to write about any of these things just yet.  I also really don’t feel like writing about feeling terrible right now. 

I’m seeing my rheumatologist tomorrow, and then I am scheduled to get my next Remicade infusion on Thursday, so I’m hoping that this will be my lowest point – it’s not uncommon for me to feel awful when I’m due for Remicade.  One of the things I want to discuss with the doctor tomorrow is moving the infusions closer together.  Right now I get them every eight weeks, but I start going downhill between weeks 5 and 6, and am in bad, bad shape by this point.

Here’s hoping I’ll be back soon, doing better and ready to write!

Prednisone 3, Me 0 – Or: I fought the Pred and the Pred won

Wednesday, September 16th, 2009

brownies

This weekend, still on much-higher-than-usual doses of prednisone and flaring anyway, I gained three pounds in three days.

I learned something new about my buddy Pred this weekend. I knew that prednisone made my appetite rage out of control, that it seemed to make food taste more delicious than usual, and that it messed with my metabolism so that I would stop losing weight even during times of complete faithfulness to a weight-loss diet.  What I didn’t realize before, though, was that it could actually CHANGE MY THINKING.  I developed an amazing new ability to rationalize my eating choices, and the arguments seemed completely convincing at the time.  My resistance was extra-low to these suggestions because of the stress, the flaring, and busyness of the weekend.  So, at the risk of sounding like a crazy person, here’s my weekend, viewed from both my perspective and that of my pal Pred:

FRIDAY

Me:  My younger sister and her husband (let’s call them The Kids) came to visit us from across the country, arriving late on Thursday night.  On Friday morning I had to go in to have fasting labs drawn, so we decided that we’d all have breakfast out after my trip to the doctor.  I thought about places that were close to the doctor’s office, and came up with Denny’s.  I also knew that The Kids really like Denny’s, so it made sense, and off we went.

Pred:  Hey, you know what would be a great idea for breakfast?  Denny’s!  Remember last time The Kids were here, they were saying that they don’t have a Denny’s anywhere near them, and they really, really love it?  See, you’re just being a good hostess if you take them!  Since you didn’t make breakfast at your house, really, you owe them!  Don’t worry – there are healthy things you can eat there…  (After arriving at Denny’s:)  Wow, look at that!  You can build your own Grand Slam with any four things you like!  That way you can have a little of each thing – you don’t have to eat it all!  And it’s such a good deal, it just makes economic sense!  Hey, there are chocolate chip pancakes on the kids’ menu – I wonder if they’d throw some chocolate chips into YOUR pancakes?  (They did.  And yes, I ate the whole thing.)

Me:  We spent the day at the beach and had a great time.  Then we decided to have lunch at my favorite Mexican place, known for its decadent white cheese sauce.

Pred:  We all got lots of exercise at the beach, so you can afford this!  Besides, it’s a special occasion!  MMMMMMMMMMM…. white sauce!!!!!!!!

Me:  We went to a poker party at a friend’s house.  It was lots of fun!  We stayed up a bit too late and got very tired, but it’s so unusual for us to do this that it was worth it.

Pred:  Pizza and chips and cream soda – yay!  Oh, look – oatmeal chocolate chip cookies!  The hostess made them herself – she worked so hard!  She’s eight months pregnant, too, so eating them is really a way of showing support for her and her hard work.  MMMMMMMMMMMM…. cookies!  Hey, is that a flush?  That’s a great hand – you should celebrate!  Have another cookie, or three!

SATURDAY:

Me:  On Saturday morning, we were all exhausted and slept too late.  We were rushing to get to a friend’s Jewish naming ceremony (for both herself and her daughter), and stopped at Starbucks to get The Kids their coffee.  (I don’t drink coffee.)

Pred:  Well, you KNOW you have to take your pills, and you can’t take them on an empty stomach because it always makes you sick.  We’re here at Starbucks anyway, so you’d better get something here.  Hey, don’t they have chocolate croissants?  You love those!

Me:  The naming ceremony was very beautiful but long, and my toddler made me run around outside after him for most of it.  I was also flaring, and starting to go downhill by the time the lunch reception started – I was exhausted, everything hurt, and Pred had an easy mark.

Pred:  Bagels!  Cake!  More cake!  You worked really hard this morning running after your son – you need your nourishment!  Wow, that cake is good.  The pieces are small – another one won’t matter much!

Me:  After the ceremony we all went home.  My husband had been slammed with a work project and was sequestered in our office, and The Kids took a nap, so I ran around after the toddler some more, steadily going downhill.  At 6:00 my friend was hosting a dinner reception for the naming ceremony, and I had been looking forward to it – but by the time it rolled around, I was flaring badly, running a fever, and exhausted.  My toddler was throwing a major tantrum and my husband still had work to do, so The Kids went without us.  I burst into tears after they left, then spent the evening on the couch trying to comfort myself.

Pred:  You poor, poor thing.  RA is so awful, isn’t it?  I know how much you want to be out with your friends.  It’s just so unfair that you have to be here feeling terrible while everyone else is having fun.  It’s not like The Kids come to visit every day, either!  Gee, I hope the hostess isn’t upset with you for missing her party…  Hey, you know what always makes you feel better?  Baking.  Isn’t baking soothing?  You’ve loved doing it since you were a kid.  You don’t have to eat that much of what you make – The Kids are here to help with that!  What about that amazing brownie recipe your friend posted in her blog?  The really fudgy one that adds half a bag of Ghirardelli chips to the batter?  Wouldn’t that make you feel better?

SUNDAY

I’m not even going to talk about Sunday – let’s just say there were brownies for breakfast, a 3-year-old’s birthday party, a trip to the zoo involving zoo hot dogs, and a drive-thru taco shop.  White flag waving.

My weekend was very stressful, but totally worth it – I had a great time with great people.  Now I’m just making peace with the trade-off, which is increased pain, fatigue, and these three extra pounds.  Sometimes you just gotta live with it.  Even though the weekend is over and things are returning to normal, I can still hear Pred’s siren call.  There are no more brownies for breakfast, and I am gradually wrestling it under control, but I’m not completely back on the wagon yet.  Flaring worse than ever, which makes it harder, and struggling to deal emotionally with some bad lab results, too – see the excuses Pred will seize?  But even though I’m losing this fight, I think it’s worth documenting – first of all, because it’s the truth, and second, because becoming aware of Pred’s voice in my head helps me to separate it from the other parts of me that want different things.

Either that or I’m just losing my mind.  :-P