Archive for January, 2010

Something’s Not Right…

Monday, January 25th, 2010

Just a quick check-in… I don’t really have the energy for a long blog post.  I haven’t been feeling well lately.  I’ve been unusually exhausted for about five days now – sleeping too much, fatigued during the day, unfocused and cranky, having trouble doing the simplest tasks, weak-muscled.  I realize that with RA, saying that I am fatigued is a little like saying that rain is wet.  But somehow, something feels different about this.  I’m also bruising easily.  The last time I felt this way, it turned out that my liver enzymes were elevated.  They never did go back to normal, but they came down a lot… maybe they are back up again.  Or it could be something like anemia, or something else entirely.  It could even be the RA itself – it’s a tricky little bugger, always changing – but I just feel like it’s something else.

Called the rheumatologist about this, and he wants me to come in early for my bloodwork – it was supposed to be on Friday, but he doesn’t want me to wait.  He is adding some adrenal tests.  Since I am in the middle of a high prednisone taper, my second since December, he is worried about adrenal insufficiency.  I really hope this isn’t it.

On another note, my two-year-old picked up a bug – he is throwing up today and has a high fever.  So I’m bracing myself for the same.  This could be very tricky, since I’m supposed to go in early tomorrow for the bloodwork.  (Apparently adrenal tests need to be done first thing in the morning.)  If I’m throwing up, I guess we will have to wait… and if something really is wrong, that could be bad.

Anyway, here’s hoping it’s nothing…

Open Letter To Myself On Prednisone

Sunday, January 17th, 2010

prednisone-02

Dear Prednisone Me,

You will be starting a high taper soon in order to knock down the flare you’re currently experiencing, and I know that you usually have trouble thinking clearly when that happens.  Your energy will be running high, but you’ll also have a hard time focusing.  So here are some thoughts that I hope will help you:

1.  You’re going to want to do everything in the world, but you will also have the attention span of a flea, and a complete lack of ability to make simple decisions.  With this in mind, I’ve made two lists for you.  One has things to do that are really important and have deadlines.  The other has things to do that fall into the category of “If only I had energy, I’d love to…”  You can do things from both lists, but please start with the first one.  Also, give at least half an hour to whatever you pick – jumping from task to task will only exhaust and frustrate you.

2.  If you can’t decide what to do, use a random number generator.  Seriously.  It works.

3.  You may feel great and want to exercise, but please stick to your physical-therapist-approved plan.  You may feel invincible, but you are not.

4.  PLEASE try to control your eating.  I know those brownies will be calling to you, but you don’t have to listen.  I know you haven’t been eating well lately because you’ve been exhausted from flaring; now is your chance to get back on track.

5.  Your husband is sweet and supportive and loves you very much.  He is also not on steroids and won’t be moving at steroid-speed.  Be patient and kind.

6.  Your toddler is not trying to drive you crazy on purpose.  Be loving.

7.  If you are feeling weepy or emotional, go watch a sad movie or listen to moving music.  If you try to keep it in, it WILL come out in some publicly embarrassing way.  Same goes for angry feelings – can you say ‘roid rage?

8.  The Starbucks girl is NOT YOUR ENEMY.  Same goes for any other service-industry workers.  You are nice to them when you feel normal.

9.  Don’t overdo, overextend, or overcommit.  Again, you are not invincible.  Feeling better does not mean that you are suddenly cured.  I know it feels great to have energy, but trust me, you will pay for it later.

10.  Try to stick to a good, relaxing bedtime routine.  Prednisone brings insomnia – give yourself the best possible chance of getting decent sleep.

11.  Once you drop below 15 mg, there WILL be a crash.  This happens EVERY TIME.  Be ready for it – plan for extra rest.

12.  Try to avoid making any major life decision, having conversations with people who usually upset or irritate you, and sharing too much information with people who don’t need to know it.  These are especially vulnerable areas for you right now.

13.  If you can’t follow some of these guidelines, please cut yourself some slack.  Prednisone is a powerful drug that is known to affect behavior, and you are going to be on a high dose.  Be kind to yourself; tomorrow is another day.

Good luck!

Love,

Me

To Sleep, Perchance To Dream

Monday, January 11th, 2010

picasso dream

Last week I looked in the mirror, and saw an old woman.

It was truly startling, since I am not, in actuality, an old woman.  I studied my reflection and tried to figure out what was making me look so old.  My face is much rounder and heavier than it was in the days B.P. (Before Prednisone), but that’s been true for quite awhile.  My body is heavier too, but there are plenty of heavy women out there who don’t look old, and anyway, I’ve been losing weight.

Then it dawned on me.  I looked TIRED.

Beyond tired, really.  Exhausted.  There were heavy bags under my eyes, my skin looked dry and lined, and most importantly, there was no energy in my face.  I looked at myself and realized that I AM tired.  I think I’ve been trying to pretend for awhile that I’m not, but my looks tell the truth.  There are other clues, too.  My caffeine intake has been gradually creeping up.  I had come close to giving it up completely, and didn’t even notice this reversal until my husband pointed it out.  Of course, I snapped at him – another clue. 

I read somewhere that people with RA need more sleep than other people.  I also think I remember reading something about disturbances in the sleep patterns of people with autoimmune diseases, something that explains why we can still wake up exhausted after what seems like ample sleep.  I would love to find these things and link you to them, but, well, I’m just too tired.

Fatigue is a ridiculous term for what we experience.  It sounds so mild, so ordinary.  It doesn’t describe the bone deep exhaustion that sometimes makes me unable to lift a fork to my mouth, or makes me forget things like my own address.  It’s also a symptom that isn’t discussed much by doctors.  It’s slippery, less treatable, something that isn’t always reflected in blood tests, something that doesn’t always go along with visible joint problems.  There are also some articles about this, but again, too tired…

It’s also probably my number-one symptom, the one that recurs more often than the others.  Sometimes I wouldn’t even know I had RA if not for the fatigue.  Sometimes I’m going along, doing just fine, and it comes out of nowhere and blindsides me, destroying my plans for the day.  And I don’t really know what to do about it.

Some people say (and I’ve generally believed) that symptoms like exhaustion are messages from the body, and we should listen to them – in this case, get more sleep.  But how do you interpret the messages when they’re coming from a system gone haywire?  Doctors used to treat RA with bedrest, and the patients generally ended up completely disabled.  Now they tell us that we should stay in motion, try to exercise consistently even when the body wants to do nothing.  How do we do something so counterintuitive?

I do think that I need more sleep.  I think, in this particular case, that my body is calling me on my recent attempts to behave as if I don’t have RA and run around doing all sorts of “normal” things.  I’ve been in a flare for the past few days, and seem to be getting worse.  The exhaustion preceded the flare – a warning, maybe?

As you know if you read this blog regularly, I’ve been in an angry phase lately.  When I’m tired, my anger descends into petty irritability.  Instead of using it to spur change, or to move through the phases of grief, I start doing things like being snide with the girl behind the Starbucks counter.  Not like me, and not productive.  Didn’t make me feel any better, either – worse, in fact.

I’ve been thinking for awhile about my sleep habits.  To be honest, they’re not great.  A lot of this has to do with the fact that my husband and I are both night owls, with years of late-night habits behind us.  He likes to work late at night, and I like to read.  “Liking” to read is a huge understatement – I read the way other people eat.  When I get into bed with a book, I can’t stop after one chapter – I have to read until some important plot point is resolved, or sometimes even until the end of the book.  I also don’t like to go to sleep until my husband is in bed, and he has just as much trouble with self-discipline as I do. 

However, we are now parents of a toddler.  Like most toddlers, he likes to get up early.  This doesn’t mess me up as much as it should, since my husband is the one who gets up with him and takes care of his morning routine.  He does this out of consideration for my RA, since mornings are usually a bad time for me.  I don’t know why the lack of sleep doesn’t affect him more, but somehow it doesn’t.  It’s killing me, though.

So, like it or not, I think I have to fix this.  I need to start going to bed earlier.  I need to stop reading so much at night, or read things that are much less interesting.  I like the idea of creating a bedtime ritual – maybe candles, music or a relaxation CD, moisturizer for my skin.  I need to do this whether or not my husband is ready to join me.  I need to accept that I simply need more sleep now, and do as much as I can to make it restorative.  If I can’t do it for my health, maybe I can do it for my vanity!

There will probably be times when it doesn’t matter whether I do this or not – the RA will bring on exhaustion anyway.  There will also be times when the RA brings its good friend Insomnia.  But I think if I did this as regularly as possible, it might help.  Anyway, it can’t hurt.

And then I can stop being bitchy to Starbucks workers.  :-)