Archive for October, 2009

Ain’t Just A River In Egypt

Thursday, October 29th, 2009

73404_sphinx_and_pyramids

The Sphinx is here today to help me contemplate the great mystery of my Denial.

By all rights, I shouldn’t have any denial left.  I was first diagnosed with RA two and a half years ago.  I went through the usual stages of grief – several times, actually.  I’ve been active on RA discussion boards since my diagnosis.  I talk about RA, read about RA, learn everything I can about RA.  Hey, I even have a BLOG about RA.

Nonetheless…

Last week my physical therapist suggested that I start wearing flexible wrist braces and a cervical collar when I play the piano.  I looked at him as if he were crazy.  “Is that really necessary?”  He said that he thought it was.  I explained to him that I already have a collection of unused braces, supports, etc. in a box under my bathroom sink from a variety of past injuries.  He asked if any of them are the kind he is recommending.  (They are not.)  I then explained that I had always thought that it wasn’t good to use things like that for too long because the body becomes dependent on them.  He pointed out the difference between recovering from an injury and accommodating a chronic condition.  I further explained that I couldn’t possibly wear braces and a collar to work – I have been working hard to keep my RA a secret from people at my workplaces.  He said that he understood that, and that I would still benefit from wearing them during my at-home practice.  I struggled to come up with other reasons why I shouldn’t or couldn’t wear them.

Then he said, very gently, “Sometimes people with very driven personalities have the hardest time accepting that there are things they really can’t do anymore.”

And that was when I came face-to-face with Denial.

I started physical therapy about a month ago because I was experiencing headaches, a sore neck, and sore wrists and forearms after playing the piano.  Sometimes one of my hands turns cold and pale in the middle of playing.  Still, I chose to believe that this had nothing to do with the RA.  My rheumatologist recently increased my Remicade, and my bloodwork is looking great, so on paper, the RA is under control.  I am still exhausted and running fevers in the late afternoon, but I stubbornly chose to believe what was on paper.  This was made easier by the fact that my recent symptoms are all muscle-based, not joint-based.  My joints are actually doing okay – no visible swelling or pain.

My physical therapist, however, persists in treating me as an RA patient.  He explains that my muscles are most likely tight and sore because they are overcompensating for underlying joint instability.  He agrees that the joints don’t seem to be in a current flare, but doesn’t think that changes the basic problem.  He also points out that as the weeks pass and my Remicade begins to wear off, I get more tired, and it gets harder for me to do my PT exercises.  This is a pattern I didn’t want to acknowledge, even though it’s one I’ve seen over and over. 

Why am I so determined to believe that my RA is under control, and that the pains and problems I’m experiencing must have another cause?  Why, after all this time, do I still feel such anger and sadness when I realize that no, I am most certainly not in remission?  Isn’t this something I already know?  How many times will I cycle through the stages of grief before I reach Acceptance?

I did a foolish thing – I committed to several performances this month.  Even though I was already experiencing the headaches and wrist pains, my pride just couldn’t handle saying “no” when I was asked – I perform less and less all the time, and grabbed on to this chance to feel like I still have a performing career.  This week, I have two long rehearsals and then performances on Friday and Sunday.  I did this knowing that my Remicade infusion is scheduled for NEXT week, and that the week before my infusion is always the worst.  I chose to believe that because we increased my dosage and moved the infusions closer together, this time would be different.  This was a huge leap of faith, and, as it turns out, a misguided one.  Last night I ran through the program and was in such terrible pain by the end that I wanted to cry.  There is no backing out at this point, because I am performing with others who are depending on me to be there.

This is not the first time I’ve committed to performances and then regretted it.  I’ve always been able to get through them, but suffered in the process.  Each time I tell myself that I need to learn the lesson, but so far, it hasn’t gotten through.  My fear is that one of these times, my luck will run out, and I’ll end up having to cancel, or that I’ll be suddenly unable to play in the middle of a performance.  These things would be career-enders.  And I would very much prefer to end my career on my own terms, by choice, with my head held high.  So why do I do this?

Denial.

There is a fine line between fighting for something you love and denial.  I think I have crossed it this time.  I believe that I can continue to play the piano, but I think it’s time to back away from high-profile, high-pressure performances.  And I also think it’s time to accept that if I want to keep playing, the wrist braces and cervical collar might not be such a bad idea.  I would like to stop seeing them as admissions of failure and instead start seeing them as helpful tools, even friends.

For now, I will grit my teeth and struggle through the next several weeks.  I hope that next time I am asked to do something like this, I will be able to look back on this post and remember.

My New Baby!

Saturday, October 24th, 2009

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Meet Little Martin!  I finally bought him yesterday, after doing lots of research and then waiting for just the right sale. 

I’ve wanted to play guitar for a long time, but have struggled with it.  I got an acoustic guitar for my birthday when I was thirteen, fooled around with it a little, learned some basic chords, and then put it away.  I always found it uncomfortable to play – it made my left wrist ache, and there were some chords I just plain couldn’t reach with my relatively small hands.  This puzzled me, since other people seemed to find guitar easy to play.

Once I developed RA, I figured that I’d just have to put the idea of playing guitar behind me forever.  Then I had a revelation – hey, maybe they actually made guitars in different sizes!  Maybe the one I got when I was thirteen just had an unusually wide fingerboard, making the strings hard for me to reach!  Maybe the tension or weight of the strings could also be adjusted to make the strings easier to push down!  Feeling dumb that I never considered these possibilities before, I contacted a friend of mine who is a luthier (fancy word for a guitar-maker) and asked him what he would recommend for a person with RA.  He threw out a lot of fancy terms I didn’t understand, but enough of it was clear to send me to a guitar store, where I discovered the Little Martin.

It’s called this because it’s a 3/4 size guitar, designed for backpacking, tossing in an overhead compartment of a plane, or for use by children or smaller adults.  In the store, I tried the few chords I know and found that yes, it was easier to reach them.  My luthier friend also suggested that I have the guitar set up with light-gauge strings - this would mean sacrificing some sound quality, but might be a good idea until my fingers got used to playing.  I haven’t had this done yet – I’m going to see if it turns out to be necessary or not – but it’s good to know that it’s an option.

Buying this guitar represents three things to me.  The first is admitting that my RA is a reality, and that I need to adapt to it.  I see the Little Martin as a very beautiful assistive device – a piece of gorgeous adaptive technology that will make something possible for me that otherwise might not be.  The second is that RA does not have to mean giving up all dreams.  Sure, some things might not be possible for me anymore, but sometimes there’s a way around obstacles. 

The third is a step towards taking good care of myself and appreciating myself, something I wrote about in my last post.  Little Martin was not cheap, even if I did get him at a fantastic price.  The truth is, I don’t know how much I will actually play guitar.  Little Martin may end up in the corner gathering dust.  But buying him meant that I decided that I deserved a beautiful present.  I had to fight with some guilt over spending the money and wondering if I would actually use him, but in the end, I did it.  And I think that’s worth celebrating!

Being Kind to Myself

Wednesday, October 21st, 2009

As I navigate the complex process of coming to terms with my RA, I have made an effort to cultivate a positive attitude.  This doesn’t always come naturally to me – I tend to be more pessimistic – but I think it’s an important tool in dealing with a chronic illness.  So far, I’ve been pretty successful at appreciating the little things that add loveliness to life.  I also appreciate the big things, like having a supportive and loving family.  Something I’ve overlooked, though, is that this attitude of appreciation also needs to extend to myself.   

 My recent pity party has caused me to think deeply about autoimmune disease as a metaphor for the way I sometimes treat myself.  Somehow, being kind to myself is something I’ve overlooked.  When I really stop to examine my thinking, I find that I am often… well, MEAN to myself. 

I’ve always been a perfectionist – I think the classical music field attracts them.  If I get a 99 on an assignment or test, I focus on the missing point.  When I make mistakes in life, it’s really, really hard for me to get past them.  I could get into all sorts of psychological reasons why this is the case, but it’s not important right now.  What’s important is recognizing this, and understanding that it doesn’t serve me here.

So, in addition to appreciating little things and big things in my life, I want to commit to treating myself with kindness.  I have a son who is almost two, and if he is hurt or sick or sad, my instinct is to pick him up and hug him.  I can’t imagine saying to him, “What’s wrong with you?  Why can’t you just get over it?”  I can’t imagine that that would help him, either!  So why shouldn’t I treat myself with the same loving kindness?

I’m not sure what this means yet.  Some of it means giving myself the space for a pity party now and then, or finding little ways to comfort myself when things are tough.  Some of it, maybe the more important part right now, means appreciating the things I do to try to improve my life with RA.  It’s hard for me to see these things, and hard to write about them.  It’s also hard to give myself credit for them.  The other day, I asked my husband for help with this.  He began naming things he has seen me do that he thinks are admirable.  And just like that, BAM!  POW!  I blocked each and every one of them:

MY HUSBAND:  You’re really good about taking your pills every day.

ME:  No – remember that one day I forgot them?

MY HUSBAND:  That was one day.

ME:  No, I think it happened more than once.

MY HUSBAND:  Okay… you’ve been really proactive about seeing the doctor when a new symptom comes up, and getting to the bottom of what’s going on.

ME:  Maybe that’s just me being a hypochrondriac.

MY HUSBAND:  But every time you’ve done this, it turns out there really is something wrong.

ME:  Well, maybe I’m CAUSING the problems, then!

(This, by the way, has been another unhealthy theme – that somehow I caused my illness, or that it’s a punishment for something I did wrong at some point in time.  Totally irrational, and I don’t believe for a minute that this is how things work when it comes to OTHER people!)

This, then, is my new challenge for myself: to start appreciating my own efforts.  Now let’s see if I can do it without insisting on doing it perfectly!  :-)

Pity Party

Wednesday, October 14th, 2009

Party

Yesterday I had a pity party. 

The reasons behind the pity party aren’t all that important.  What I found interesting about the whole thing was my reaction to it, and my thinking about it.

See, the people who blog in a positive way about their lives with RA are my heroes.  (Some of them are even superheroes – you know who you are!)  ;-)   I really want to be one of them.  They have inspired me to be more positive, more proactive, more focused on the good and beautiful things in my life.  On the whole, this has made a big difference in my life and in my approach to the disease.

But some days, that all goes out the window.  Monday was such a day.

It was a bad day, and I think it would be by almost anyone’s standards.  Not only did bad things happen, but I was so worn down by being sick all week that I just didn’t have the inner resources to deal with them.  So I had a bit of a meltdown and ate lots of things that weren’t exactly health food.

Now comes the interesting part.  I was clearly gearing up for a pity party, but couldn’t seem to get it started.  Not because of any positive shift in attitude – actually, I just kept feeling worse and worse.  But on top of the bad feelings I already had came a new, negative thought: Look at all these people who are able to stay positive while living with RA.  What’s wrong with you?  And lo and behold, GUILT showed up and tried to shut down the party.  Guilt stood in the doorway calling me names like ungrateful, whiny, and weak, yelling at me to stop being such a big baby and suck it up.  And I tried, I really did.

Problem is, guilt isn’t a good motivator.  I woke up yesterday (Tuesday) morning feeling, of course, worse.  I was still feeling terrible from the things that happened on Monday, and now, I also had the things Guilt called me ringing in my head.  I was completely frustrated with my inability to get on with things.

Then a few things occurred to me:

1.  Autoimmune diseases already do a really good job of beating us up from the inside.  It’s the ultimate form of attacking ourselves.  Did I really need my thoughts to start doing the same thing?

2.  When I really think about it, it’s not true that my RA-blog heroes are positive all the time.  In fact, some of them have written very honestly and openly about their struggles with depression and about times when they felt overwhelmed by their condition.  If anything, this makes them even MORE heroic to me.  If they were just blissfully going along, never feeling frustrated or upset or angry, something wouldn’t be right.  And even if a blog did express nothing but positive thoughts, that wouldn’t necessarily be a true picture of what actually goes on with that person.  Blogs are mostly snapshots of a given moment, and I know that I’ve been reluctant to post when I’m not feeling well – why shouldn’t that be true for others?

So I decided to go ahead and let myself have that old-fashioned pity party.  I complained, I ranted, I vented.  Since a party’s not a party without guests, I shared these feelings with other people.  I allowed myself to be comforted, something that can be hard for me.  I allowed myself to act like a giant rebellious baby - “I don’t WANT to take a million pills every day!  I don’t WANT to have all these stupid diseases!”

And you know what?  I feel better today.  Better, braver, and ready to pick up where I left off.  Ready to continue on the path to acceptance, ready to continue being proactive with my self-care, ready to keep planning small changes that will make life with RA better and easier.  Maybe every now and then, it’s GOOD to have a pity party.  Maybe it’s healthy.  Maybe it’s better to accept where I am than try to force myself to be someplace that I view as “further along.”  Maybe it’s time to be nicer to myself in a lot of ways.  And maybe it’s not so good to hide myself away and let these feelings fester – maybe I should stop worrying about how I look to people reading my blog and recommit to my original goal, which was honesty.

Next time I have a pity party, I’ll make sure to invite you!

Seeing Clearly

Wednesday, October 7th, 2009

sleeping-beauty-a-moment-to-remember

I had my Remicade infusion on Thursday morning.  Because of my recent long flare, my rheumatologist decided to increase my dosage by one vial, and also to move my infusions from every 8 weeks to every 6 weeks.  We’re hoping that this will do the trick; otherwise, we may have to think about a change of meds.

On Friday morning I woke up.  I lay in bed for awhile, not moving, feeling cautious.  How was I feeling?  What would happen when I started to move, tried to walk?  Then I got out of bed.

The sun was shining.  The birds were singing.  I half-expected small woodland creatures to come to my window. 

There was NO PAIN.

The absence of pain is a truly extraordinary thing.  It’s like waking up from a long sleep (hence the above picture of Sleeping Beauty, for those who didn’t recognize her).  On a day-to-day basis, I don’t always notice the pain – I have learned to block out large portions of it, and it manifests instead as fatigue, or brain fog.  But when it is taken away, I can see clearly just how much pain there actually was. 

The rest of the weekend didn’t go quite as well – on Friday night, my toddler got the croup, beginning a period of several sleepless nights for everyone in the house.  When I found myself dead exhausted on Saturday, my first (illogical) thought was, “Oh no!  Maybe the Remicade didn’t work!”  Then I realized this extraordinary fact:  It’s possible for me to feel crummy for reasons that have NOTHING TO DO WITH RA.  Normal things, like not getting enough sleep, or taking care of a sick toddler, or, later, catching his virus myself.  (Carla, from the RA blog “Carla’s Corner”, writes about this very issue here - what perfect timing for me!)  And it sounds strange, but this makes me happy.  On Monday I went to work, feeling completely worn out from my weekend – but then I walked from the parking lot to my building, and realized that my body felt light and easy, with no pain in my knees or feet.  This walk is usually difficult for me – in fact, it was on this walk that I first noticed the painful feet that were the first sign of my yet-undiagnosed RA. 

So now I am sick, but still rejoicing in my lack of pain!  I hope I’ll get over this little virus soon enough to REALLY enjoy it.

And since this is a musical blog, here’s a song (not one of mine) to mark the occasion!

Remicade Day

Thursday, October 1st, 2009

You know, most of the time these days I pretty much take my Remicade infusions in stride.  But once in awhile, in the middle of an infusion, I’ll look down at my arm, then up at the bag on the pole, and think, “This really sucks.”