Archive for September, 2009

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!

Remicade Dream

Sunday, September 20th, 2009

I’ve been thinking a lot about the purpose of this blog. When I started it, I described it as “a musician’s life with Rheumatoid Arthritis.” Recently, though, there’s been a whole lot of RA and no music to speak of. Unfortunately, this is a pretty accurate picture of how life has been going lately.

Annoyed by this, I spent some time this week at the keyboard, working on the rewrite of my “Remicade Dream” song. (To read a little more about the original song, or if you don’t know what Remicade is, go to the Why “Remicade Dream”? page on this blog.) Although the song is about the experience of getting a Remicade infusion, it was originally written one night while I was feeling particularly sick after taking methotrexate. It had a trippy, woozy quality to it that I liked, but seemed to be missing something. So this week I played around with some more instruments and different sounds, and I wrote a whole new middle section.

This song represents a complete departure from the simple, acoustic style of “Don’t Let Me”. On the whole, I think I prefer the “Don’t Let Me” writing style, but I enjoyed working on this one. It was a chance to play with some new toys, experiment with different layers of sound, and break out musically. Since I’m still figuring out who I am as a songwriter, this is all good for me. Also, the trippy, effects-heavy style seems like a more accurate picture of my Remicade experiences – partly since I always premedicate with Zyrtec, which makes me very spacy, and partly because the whole experience is so surreal to begin with.

As a side note – my husband always drives me to my Remicade appointments and then takes our son to the park. (He stayed with me the first time because I was nervous, but I’m used to it now.) The first time we did this, he told me, “Text me when your bag’s getting low.” So I texted him the following: “Mah bag’s gettin’ low!” This has now become a catchphrase in our family – if I’m feeling particularly bad or low-energy, I tell him mah bag’s gettin’ low. So naturally, I had to work this concept into the song somewhere…

I’ve also created a new page – “The Songs”, a place where you can go to hear all of the songs on this blog without having to search through the posts.

So here is the new version of “Remicade Dream” – hope you enjoy it! It’s best listened to with headphones to get all of the strange effects.

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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.  😛

National Invisible Chronic Illness Awareness Week

Monday, September 14th, 2009

In honor of National Invisible Chronic Illness Awareness Week (Sept. 14-20, 2009), I have filled out a meme that is making its way around blogs, email, Facebook, etc. (You can read about the meme and find links to other people’s responses here.) Thanks for reading it!

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Rheumatoid arthritis and Sjogren’s syndrome.

2. I was diagnosed with it in the year: 2007.

3. But I had symptoms since: the summer of 2006 – or at least that’s when the RA-specific symptoms appeared. I had all sorts of other issues for years before that, but still don’t really know if they were related.

4. The biggest adjustment I’ve had to make is: giving up my full-time career as a classical pianist.

5. Most people assume: that I am fine, since I don’t tell many people about my illness. Since they don’t know that I take prednisone, some people probably think I’ve really let myself go since I had my baby. (I gained 40 pounds when I started taking it.)

6. The hardest part about mornings are: getting out of bed, and then getting myself moving.

7. My favorite medical TV show is: Scrubs! (I know, not exactly a serious one… I don’t really watch the other kind.)

8. A gadget I couldn’t live without is: my husband! (Kidding – sort of. He does most things for me that I can’t.) My disabled parking permit is another one – not exactly a gadget, but I couldn’t do without it.

9. The hardest part about nights are: when insomnia hits during a flare.

10. Each day I take __ pills & vitamins: 20 on an average day, plus an inhaler drug twice a day; extra pills a few days a week, and an infusion drug every 8 weeks.

11. Regarding alternative treatments I: prefer at this time to use them as complementary medicine – I went without traditional meds for too long, got much worse, and suffered damage. I do think they are very useful partners for traditional meds, though, and believe that they do work well for some people on their own. I try to respect the choices of others and appreciate it when they do the same for me.

12. If I had to choose between an invisible illness or visible I would choose: The answer to this question depends on how I am feeling. Most of the time I am grateful that I can choose to hide it, but sometimes I wish it were more obvious so people would help me more. I also wish my illness were visible when I need to use my disabled parking permit – it makes me feel incredibly self-conscious and even guilty to look perfectly fine and park in those spots.

13. Regarding working and career: I will continue to do the work I love for as long as I am able, but have had to slow down considerably, and am constantly seeking new ways to do it.

14. People would be surprised to know: exactly how serious RA can be, and how many seemingly-unrelated problems pop up around it. I expected joint pain, but was unprepared for things like crushing fatigue, low-grade fevers every afternoon, skin problems, lung problems, bladder problems, non-healing wounds, infections… the list continues to grow.

15. The hardest thing to accept about my new reality has been: the fact that I can’t just pursue my musical dreams full-bore like I used to – there are limits now, and I have probably already reached the highest point in my career.

16. Something I never thought I could do with my illness that I did was: continue to perform as much as I have.

17. The commercials about my illness: piss me off a bit; they really underplay what the disease is about, and make people ask me, “Why don’t you just take such-and-such a drug, and you’ll be all better?” (Especially annoying when it’s a drug I already take, or one that isn’t meant for my condition.)

18. Something I really miss doing since I was diagnosed is: playing the piano for hours and hours a day. (Are you sensing a theme here?)

19. It was really hard to have to give up: Irish dancing – too hard on the knees and feet now. I also really miss my dancer friends, who I don’t see often anymore.

20. A new hobby I have taken up since my diagnosis is: songwriting – that’s what prompted this blog. Oh, and I guess blogging! :-) I also keep trying to take up crochet, but it hasn’t quite stuck yet.

21. If I could have one day of feeling normal again I would: Well, I sometimes DO get days of feeling normal, and they are wonderful – the problem is that I can’t predict when they will come, and so I am sometimes paralyzed with indecision about what to do and therefore waste them. Maybe I should give more thought to this question, and have a plan ready!

22. My illness has taught me: deep compassion for other people going through difficulties.

23. Want to know a secret? One thing people say that gets under my skin is: how much of a saint my husband is. I completely agree that he is, and often say it myself – but it leaves me feeling like a giant burden, or something damaged. I like to think that he gets something out of being with me, too!

24. But I love it when people: ask me how I am doing and seem to be really interested. I also love it when they relate to me like basically the same person I was before.

25. My favorite motto, scripture, quote that gets me through tough times is: I am still working on this one.

26. When someone is diagnosed I’d like to tell them: that it will be okay, and that I’m here anytime they need to talk about it.

27. Something that has surprised me about living with an illness is: how it’s sometimes possible to turn the bad things into good things – for example, I always feel terrible on the day I take methotrexate, and I have turned it into a day to relax, watch light-hearted movies, read silly books, and slow down. Another example – the songwriting I have begun to do.

28. The nicest thing someone did for me when I wasn’t feeling well was: when my mother flew out and spent a month taking care of me and my family when I was going through an especially rough patch. Also, the million small kindnesses my husband performs every day. One example – he dresses our baby in an “I Love Mommy” onesie when I have to have my infusions, or when I’m sick from methotrexate.

29. I’m involved with Invisible Illness Week because: I want other people to know that they are not alone.

30. The fact that you read this list makes me feel: that you care enough to want to know what I am experiencing – thank you!

My Tango With Prednisone

Tuesday, September 8th, 2009

tango 

Well, here we are again – prednisone and me.  I have been flaring for more than a week now, resisting going up on my pred.  But yesterday was a real low point – I was exhausted and cranky all day, and eventually my fingers got so swollen that an alarming-looking red bulbous thing popped up around my wedding and engagement rings.  It hurt so much that I was worried I’d have to get my rings cut off.  Also, my husband should be nominated for sainthood at this point – my brain fog was so thick that I had trouble making myself clear about anything, and kept getting angry at him for not understanding me.  I also cried when he teased me about the rings, which I don’t do when I’m feeling normal.  So I finally gave in and started a prednisone taper.

In looking for an image to express my relationship with prednisone, I thought that “battle” sounded too combative, while something like “waltz” sounded too genteel.  The idea of a tango somehow resonated with me, even more so when I read this theory of the history of the dance:

“The story of Tango as told is that it started with the gauchos of Argentina. They wore chaps that had hardened from the foam and sweat of the horses body. Hence to gauchos walked with knees flexed. They would go to the crowded night clubs and ask the local girls to dance. Since the gaucho hadn’t showered, the lady would dance in the crook of the man’s right arm, holding her head back. Her right hand was held low on his left hip, close to his pocket, looking for a payment for dancing with him. The man danced in a curving fashion because the floor was small with round tables, so he danced around and between them.”

Hmmm… stiff knees, dancing around obstacles, dancing with a stinky partner in the hopes of getting something good from him…  Yeah, that sounds about right.

Prednisone – the drug we love to hate and hate to love.  There are even support groups  for those dealing with the complexities of their relationship with it.  I haven’t joined any of them, but I understand them.

There are two sides to the prednisone story.    On the one hand, it truly is a miracle drug, and for some people, even a lifesaving one.  When I take it in high enough doses, my inflammation and all of its symptoms subside almost immediately, and I’m full of pep and energy.  This is amazing to me, especially when I’ve been unable to get out of bed the day before.  At times like this, I am supremely grateful that this drug exists.

The other side of the story is that the drug often comes with a host of side effects, which become more and more serious the longer the drug is taken.  Not everyone gets side effects from prednisone, and not everyone who does gets exactly the same ones, but mine are so common that I’ve heard them over and over again.  I’ve gotten the characteristic prednisone “moon face,” a fatty hump on the back of my neck, stretch marks, odd facial hair (helloooooo, Elvis sideburns!), bizarre mood effects (manic energy, sudden weepiness, etc.), a massive sweet tooth with matching huge appetite, and, of course, the famous weight gain.  When I first started taking prednisone, I gained forty pounds in less than two months.  I passed through several sizes of clothing in a blink and don’t even have anything in my wardrobe for the way down.  What was REALLY painful is that I had just had a baby and had succeeded in losing the baby weight!

After awhile, I started to wonder – did the prednisone itself cause the weight gain, or was it just because of the overeating?  So I did a little experiment. 

During a brief time when I was off prednisone completely, I found that the pounds started dropping off me with very little effort.  I thought they would probably go even faster if I dieted, so I planned out a well-structured 1200-calorie-a-day diet for myself.  I started losing weight at a good fast clip.  Then I started having problems and my doctor put me back on 5 mg, a relatively small amount.  The weight loss slowed down, but I was still able to lose about 1/2 pound a week.

Then I flared, and had to go up to 30 mg for a little while.  I was extremely disciplined and ignored the raging appetite, and continued with the exact same 1200-calorie diet.  And guess what?  The weight loss stopped completely.  I managed not to gain the weight back, which made me realize that I had a new tool in my arsenal, but it was very, very difficult.  It was also frustrating to work so hard for no loss at all.  Any tiny deviation caused a gain, so quickly it was unbelievable. 

So I’ve concluded that at least for me, the prednisone really does cause weight gain in a way beyond the increased appetite.  I’ve realized that I will have to exert great dietary self-control every time I do a taper, and get comfortable with breaking even during that time, or even accept a small gain.  And I look forward to the day when I can get off the drug completely and get down to a healthy weight again.  I’ve lost 20 of the 40 pounds already, and it’s really hard for me to start another taper and see my hard work stop bearing fruit for awhile.

For now, we will tango, and I will do my best to enjoy being able to glide around the floor with ease, instead of focusing on the stinkiness of my partner.

Auch kleine Dinge (Even Little Things)

Thursday, September 3rd, 2009

Rose

 

Every weekend, my sister used to go to an outdoor market and buy herself a single beautiful rose. She would cut the stem short so that the flower rested perfectly on top of a bud vase. All week long she would keep this vase on her desk at work, a small pleasure that made her days a little brighter.

A song by Austrian composer Hugo Wolf (1860-1903) has been running through my head almost every day this week, and I am beginning to think it is trying to tell me something. It is called “Auch kleine Dinge,” which means “Even little things,” and the translation is as follows:

Even little things can delight us,
Even little things can be precious.
Think how gladly we adorn ourselves with pearls;
They are heavily paid for and are only small.
Think how small the olive is,
And yet it is sought for its goodness.
Think only of the rose, how small it is,
Yet smells so lovely, as you know.

Here is a recording of this song from a concert in 2003, before I had RA. (I’m the pianist on this recording, not the singer.)

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I have been in a flare since Monday. When this happens, big things like plans, dreams, and my sense of self seem to go out the window. My world shrinks down to the size of my own body, sometimes even to the size of a particular joint that is causing the most pain. It’s hard to be cheerful or optimistic or even just okay. Even when I am not actively flaring, just having RA has made my world smaller in many ways – activities I can’t do anymore, friends I don’t see because they were connected to those activities, parties I miss because I’m too tired to go, being unable to enjoy a nice glass of wine or a Mai Tai because of methotrexate, having to watch what I eat because of prednisone, staying home with my toddler too many days because taking him out is just too difficult…

It’s important to grieve those losses, and I am doing so. My songwriting is one way of working through these feelings, and writing and talking with trusted friends help too. I know that grief is not always a straightforward process, and that as my disease changes, I will probably have to revisit grief many times. But I also have a growing awareness of the good things in my life – not just the old things that I still have, but new things that have come along.

So I am trying to remind myself to notice and cultivate the “kleine Dinge” that add a little brightness to a difficult situation. Sometimes this seems very, very hard to do, but I think it actually makes a difference in how I feel. I also realize that I have been neglectful of this, especially when I look at people like my sister, who knows how to take this kind of joy in many things in her life.

Today’s “klein Ding”: My 21-month-old son has just learned how to give real kisses! He used to throw air-kisses, but the feeling of his little kiss on my cheek is something completely new, and amazing.

What are some of the “kleine Dinge” in your life?

Explaining RA

Wednesday, September 2nd, 2009

To be honest, I don’t explain my RA very often.  I’m selective about the people I choose to tell, for reasons both good and bad.

The first reason, a very practical one, is the fact that I am still a working musician.  This is a word-of-mouth business, and one that is very skittish about things like illness and injury.  If word starts getting around that I have a disabling chronic illness, people will stop calling me for gigs, regardless of how well-controlled my illness may be.  I have seen this happen before to talented friends who chose to disclose their conditions.  I made the mistake of telling one colleague about my RA, and then watched as all referrals from that quarter dried up.  At this point, while I am still capable of playing, I’d prefer to be the one to decide where my limits are, rather than having them decided for me.

The second reason is to avoid the following: “Oh, I have arthritis too, in my knee, but I just rub Ben-Gay on it and I’m fine.”  “Your RA will go away if you just take this supplement/eat this food/don’t eat this food/stand on your head and count to 50 backwards…”  Or everyone’s favorite: “But you don’t look sick!” I could go on, but I think you get the idea, and have probably heard these things before if you have RA.  Eventually I will get to the mature, healthy point where I can just smile and thank the person and let these things go; at this point, they still annoy and upset me, or, worse, make me want to argue.  This isn’t good for me.

The third reason is really NOT a good one: because talking about it interferes with my well-crafted denial.  Although I’m much less in denial than I used to be, it still pops up now and then in surprising ways, and one of them is my reluctance to tell people, and my hope that I can pass for “normal.”  (At a later point, I plan to write a whole post about my journey with denial.)  I have gotten better about this, and have told more and more of the people in my life.  Writing this blog helps too.

As I start to tell more people, I think about ways to explain the disease that are clear and simple, yet accurate.  Some of the explanations I have read make RA sound like something mild and benign, while others are terrifying.  While both sides are true for some people, most of us live somewhere in the middle, and I’ve been looking for an explanation that is thorough without being either overly scary or dismissive.

Enter Rheumatoid Arthritis Guy, who writes what is probably my favorite RA blog.  (If you haven’t seen it, you really should check it out.)  He created what I think is a great explanation, both simple and thorough – the 60-Second Guide to RA.  From now on, I think I will send my friends there when I want them to understand.

In the meantime, the guide has helped me to focus my “30-second elevator speech” – the brief explanation that gets the main points of RA across before people’s eyes glaze over.  I’ve never actually delivered this speech, but as I become more open about my condition, I’m sure I will.  The way I choose to share (or not share) the information is a reflection of the way I feel about the disease.  I know where I would like to be with it, although I’m definitely not there yet – my eventual goal is to be able to talk about my RA in a simple, calm way, as a fact of my life.   Not the central fact, which is how it sometimes seems, but simply a fact.  Not minimizing it, which does a disservice not only to me but to others with chronic illnesses, but also not turning it into a giant melodramatic tragedy.

Maybe I will get there someday…