Archive for December, 2009

Rebellion

Tuesday, December 29th, 2009

jamesdean

 Buckle your seatbelts… this one will be part pity party, part confessional, part angry rant!

A few weeks ago, I set out with the intention of circling my wagons and writing a series of posts about the many things I do (or don’t do but would like to) to manage life with RA.  So I wrote a post about my organizational tools, and another post about exercise.  But then a funny thing happened.  Somehow, writing about these things (especially the organizational tools) made me depressed.  Maybe seeing it in print made me realize how big a part of my life this RA thing is, and how much I actually resent having to do all this stuff.  (Guess I’m still camping on the banks of that river in Egypt after all – when do I finally get out of that stage?)  And the sad thing is, these two posts were only the tip of the iceberg of the many, many things I need to do to stay well.

So I didn’t just fall off the wagon – I jumped off the wagon, then tipped it over and kicked it, hard.

This is a bit of an exaggeration, since I haven’t abandoned all of my healthy habits.  For example, I didn’t stop taking my pills – but I did get a little careless with the times at which I took them and with the steps I usually take to protect my stomach.  And I went faithfully to my Remicade infusion last week – a really negative experience I’ll write about another time, since I think it set off this whole rebellious phase I’m in.  I’ve been keeping my promise to exercise more, and I’ve also been going to my physical therapy appointments.

But all sorts of other things, big and little, have fallen by the wayside.  I’ve been eating really badly.  I haven’t been keeping my health journal.  I’ve stopped using my neti pot – this was something I started doing to give myself a little extra protection from colds, flu, and allergens, and it really did seem to do the trick.  I’ve stopped putting Refresh PM gel in my eyes at night, which I am supposed to be doing for my Sjögren’s Syndrome.  I’ve stopped eating yogurt to protect my stomach from my meds and have abandoned my fiber supplements.  On my last methotrexate day, I neglected to drink extra water before, during, and after taking the pills, and was completely flattened by nausea, headache, and all sorts of ickiness; ruined the whole day.  And I know better by now.  There are other things too, but this gives you a general picture.

Yesterday was my wedding anniversary, and my husband and I had planned a one-night getaway (without our son) to a resort hotel and casino.  I wore a sexy skirt that was a bit too tight, and knee-high boots that used to be perfectly comfortable before RA.  Boy, did I get to see how things have changed.  I barely made it through dinner before we had to go back to the room so I could change – and what a relief it was to throw on jeans and my Dansko clogs!  But it also upset me a lot.  I remember the days when I could tolerate a slightly-uncomfortable-but-cute outfit.  After that, we went down to the casino and played slot machines and other games, went back to the restaurant for cheesecake, and generally had fun before collapsing in exhaustion around 3 AM.

Things came to a head this morning.  I woke up feeling like a bus had hit me.  Okay, we did stay up until 3 AM – but we also slept until 11!  Hardly a serious sleep deficit.  And the other sad thing was that I didn’t have a drop of alcohol all night.  We also stayed pretty sedentary for most of the night – didn’t go dancing, didn’t walk far, didn’t do anything more strenuous than pushing buttons on slot machines.  So this horrible, hungover feeling didn’t feel… earned. 

The worst, though, came at breakfast.  We went down to the restaurant around noon.  I usually take my pills at 10 AM, and I was really feeling it.  So we ordered our food, and then I decided – stupidly – that since the food would be coming in just a few minutes, I could go ahead and take my pills.  (This is a lesson I thought I had learned early on – I absolutely have to eat before taking the pills.  I guess maybe the lesson needed repeating.)  Well, the food came pretty quickly, but the pills beat it to my stomach, and I started feeling incredibly nauseated, dizzy, and generally awful.  I had ordered French toast, which looked wonderful, but I could barely get the fork to my mouth.  I forced myself to eat some of it and got a glass of milk into my stomach, knowing that it would help, but had a truly miserable half hour before it worked.  And now it’s night, and I’m STILL not feeling well.

Now, this is where the angry rant comes in.  IT ISN’T FAIR.  My “wild night out” was incredibly tame to have caused such suffering.  My husband had the same night I did and feels perfectly fine.  Friends of mine can stay out all night drinking, get hardly any sleep, and yes, they feel crappy the next day - but then it’s gone.  If past experiences are any indication, I will be paying for this for days. 

I just want some NORMAL LIFE.  I want to be able to overindulge at Christmas.  I don’t want to have to do a million little stupid things every day just to keep this body working.  I want to be able to have the occasional night out without so much suffering.  I want to be able to drink alcohol.  I want to tire myself out running around shopping, going to parties, doing all those fun holiday things and just have it be NORMAL TIRED, not bone-crushing pain.  I actually did very little running around this year, and still paid for every minute of it.

I really thought I had made peace with my trade-offs.  I knew that because of the prednisone I am taking, going off my diet for even a short time would have much bigger consequences than it normally would for me.  I had decided that I was okay with gaining extra pounds, and was willing to work hard to take them off when the holidays were over.  I knew that every event I chose to attend meant at least a day of recovery.  But somewhere along the line, I stopped being okay with these things.  I am NOT okay.  I am ANGRY.

 I think this happens to most people with RA once in awhile.  We just get angry, and tired of the whole thing, and start pushing at the boundaries to see where they are.  Some people go farther than I did and just stop taking their meds.  (I’m not talking here about people who choose not to take meds because they want to treat their RA naturally – that’s a whole different thing, and a choice I respect.)  Some people do things like continuing to drink alcohol regularly even though they are on methotrexate or have liver conditions.  My forms of rebellion are smaller than these, and this is why it upsets me so much that they have had such a huge effect.  I NEED all of these little maintenance things, and it really pisses me off.

Anger – another one of the stages of grief.  This is not the first time I have visited this stage, and it probably won’t be the last.  I am tempted to censor this blog entry.  It’s not positive, it’s not proactive, and it doesn’t put a happy face on RA, or make me look particularly strong in my coping.  Anger isn’t pretty or easy.  It is where I am right now, though.  And I did promise that next time I had a pity party, I would invite you!

So here I am, good and angry.  Here I am, paying for every moment of fun I’ve had over the holidays, tallying it up and realizing that it’s such a pitifully small amount of fun for so much angst.  RA SUCKS.  It just does.

*Whew* 

I am still trying to decide what to do about my wagon train.  It has become clear to me that I have to resume my healthy habits.  They were doing more for me than I thought they were.  Maybe I was just hoping they weren’t necessary.  I don’t know if writing about them will just set me off again, or if it will be good for me.  Maybe both?  Maybe this angry phase is necessary to move out of the denial I keep thinking I’m not in.  (Denying my denial?)  Maybe I need to stay with it, move through it.  Maybe it can unblock me, get me writing music again, get me feeling things I haven’t been letting myself feel.  I also know that when I’m in a better place emotionally, I realize that I’m lucky that there are things I can do that actually make some difference in how I feel.  So maybe I will resume writing about the wagon train.

Just not tonight.

And So This Is Christmas…

Thursday, December 24th, 2009

Christmas

 Or Christmas Eve, anyway.  But I don’t know if I’ll get to write tomorrow, so Merry Christmas to all!

Here, stolen from RA Guy, are the 12 Days of RA Christmas – here’s hoping your holidays look nothing like this!

On the twelfth day of Christmas, Arthritis gave to me:

Twelve days in bed,

Eleven tubes of joint rub,

Ten prednisone pounds,

Nine days off work,

Eight heat and ice packs,

Seven methotrexate,

Six days of nausea,

FIVE FLAMING JOINTS!!!

Four bumpy nodules,

Three swollen fingers,

Two wrist guards,

And a cortisone shot in my knee!!!!!!!!!!!!!

 

On a more cheerful note, since this is a music blog, I thought I’d leave you with a video of my favorite Christmas song.  It’s an obscure one, but beautiful.  Enjoy!  And if you like it, you can also check out Pavarotti singing it.

 

The Wakeup Sandwich

Saturday, December 19th, 2009

Porgi amor

Yesterday I accompanied a whole bunch of singers for voice juries.  Juries are basically final exams for music students – each student prepares several pieces, then gets ten minutes to perform in front of the voice faculty while they look intimidating and write things on clipboards.  If you’ve ever auditioned for anything, it’s a lot like an audition – brief but very stressful, and in this case, the student’s grade for the semester is riding on it.  As the pianist, it’s not really stressful for me, except that the singers’ anxiety does tend to rub off.  It’s more a matter of endurance, since it’s a lot of playing for a lot of different people.

Heading into the third hour of juries, I was playing “Porgi, amor” from Mozart’s The Marriage of Figaro.  This is one of the loveliest arias in the soprano repertoire, full of sorrow and love and longing.  So there I was, playing away, and I caught myself thinking very deeply and in great detail about… a sandwich.

A sandwich?  Really?

Okay, so I understand that the RA and the RA meds can interfere with my thinking and make concentration very difficult.  I also understand that the prednisone taper I’m doing probably had a lot to do with the subject matter.  And it was a really GOOD sandwich – prosciutto, fresh mozzarella, roasted red peppers, and pesto on artisan bread.  I also know that most professional accompanists would probably admit to plenty of mind-wandering while playing, especially when they’re playing pieces they’re played hundreds of times with dozens of singers.  (“Porgi, amor” falls into that category for me, as did most of the pieces in yesterday’s batch of juries.)  Some might even take some pride in it – the music is so engrained that they can play on auto-pilot while their minds are completely free to do something else.

But still.  A sandwich?  Doesn’t Mozart deserve better than that?  Doesn’t the singer?  Don’t I? 

My friend Meg, one of the most gifted musicians (and people) I know, has recently started a blog.  The other day, she wrote a post called “Are you HERE, OR NOT… Attention MUSICIANS and EVERYONE ELSE TOO!”  You should really read it, whether you are a musician or not.  It begins with this quote: “I told a student today, look, if you are going to play this piece, you have got to go all the way, give it your all, no holds barred…if you do not want to do this, don’t bother!”  She went on to write about the experience of learning to take the music in fully, breathe with it, listen and connect deeply.  When she was younger, she says, music actually hurt her.

When I was younger, certain pieces of music used to stir up a wild longing in me that I called “howling at the moon.”  In graduate school, I remember being in the listening library late one night when I first discovered an opera that would become one of my lifelong favorites.  At the end of the listening session I rushed from the library, heart pounding, got into my car, and drove around in the middle of the night searching desperately for an open record store because I HAD TO HAVE IT.  I used to make mix tapes of pieces of music that pierced me to the heart – strange, eclectic groupings that crossed all kinds of genre lines.  I would hear a piece and have to make it my own, and it would play in my head constantly, keeping me awake at night.  I didn’t always have the discipline or the patience to work like I needed to, but sometimes I did.  At any rate, I had the passion.

When RA came along, it brought fear with it.  Fear that my hands would become deformed and stop working.  Fear that I no longer had the stamina or energy to do the work I loved.  Some of this turned out to be true – I really don’t have the stamina anymore, and have had to cut back a lot.  Some of it has not yet come to pass – my hands and wrists have only minimal damage – and who knows if it ever will?  But the fear had an interesting effect on me.  Because I was afraid that my music would be taken from me, I launched a pre-emptive strike – and took it from myself. 

I am still a working musician, even if I work a lot less now.  I am still out there, doing things like yesterday’s juries.  My career, though smaller, is by no means over.  But here I am, thinking about sandwiches while the heartbroken Countess from Figaro pleads with the heavens for her wandering husband – “Give me back my treasure, or let me die!”  I have quit before actually quitting.

It’s true that my technique is not what it used to be, and that there are some things I just can’t play anymore.  It’s true that I can’t spend as long at the keyboard as I used to.  Let’s say that my fears come true, and in a few years I am unable to play the piano anymore.  Shouldn’t I make the most of what I am doing now?  Shouldn’t every moment spent doing this work be precious and joyful?  Even if a piece is simple, or even modified, can’t I still play it with everything I’ve got, as Meg describes?

My physical therapist was annoyed that I insisted on playing for three hours yesterday.  She was right on one level – I’m in a lot of pain today, and I know that yesterday set me back – but I made a commitment to the singers and had to honor it.  I have promised her that I will not play at all for the next few weeks, and I will honor that promise because I know that I need to focus on my health right now and not risk permanent damage. 

But here’s the thing – I want it to HURT me.  Until yesterday’s sandwich wakeup call, I wasn’t feeling much of anything about having to stop playing.  I want to feel restless, eager to get back to playing.  I want it to make me work harder at my physical therapy.  I have been shutting myself off from music, not allowing it to move me, and I have been wandering around half-dead.  When I cut myself off from that part of myself, everything becomes flat and colorless, and depression isn’t far behind.  For the next few weeks, I won’t play the piano, but I want to listen to music, breathe it in, sing, move, long for it.  And if the day comes that I really can’t play at all anymore, I don’t want to go gentle into that particular good night.  Music deserves my grief.

This morning I was supposed to go to my water exercise class.  Instead, I decided at the last minute to go see the Metropolitan Opera’s live HD broadcast of Offenbach’s Tales of Hoffman, which was showing at a local movie theatre.  For four hours, I drank in gorgeous music, beautiful scenery and costumes.  And I don’t feel that I fell off my exercise wagon; I can go to the class anytime this week.  My body may need exercise, but my soul needed this.

Thanks, Meg.

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.

Musical Interlude: Lullaby for Christopher

Tuesday, December 8th, 2009

Lullaby

I’m taking a little break from circling my wagons in order to present a piece of music.  (Music is one of my most important wagons, actually, but that’s a subject for another post.)  This is one I wrote awhile ago, but this weekend I took it out, changed some things a little, and made a recording, which I had not done before.  The piece was written as a final project for a class called “Transformative Learning,” which I took while I was pregnant with my son.  We were supposed to create something that represented a transformative experience in our lives – and what could be more transformative than a birth?

“Lullaby for Christopher” is a short piece for solo piano – no vocals – in three sections.  The first section was written during the last month of my pregnancy.  It starts with a rocking motif that is meant to represent the baby’s heartbeat in the womb.  Two other musical motifs enter, representing the mother and the father, since these are the voices he heard most often during that time.  The three motifs were written using the initials of our family members.

Before I could finish the piece, Christopher arrived – two weeks early.  The second section was written in the week after the birth, when I was home recovering – it’s meant to represent his entrance into the world.  Then the third section is essentially a repetition of the first section, but with the themes presented in reverse order, representing the baby taking comfort in the familiar sounds of his parents’ voices as he drifts off to sleep.

I could probably express it more eloquently than that, but instead, I think I’ll just play it for you.

Get the Flash Player to see the wordTube Media Player.

Wagon Train Part One: The Organizational Tools

Friday, December 4th, 2009

As promised, I’m going to be writing about my circle of wagons - the things I do (or don’t do but want to do) to help me manage life with RA. Some of these things are purely practical, some are mental, emotional or spiritual, and some are physical. I’m writing this mostly for myself, as a reminder of my own goals, but maybe some of the ideas will help you too! And I’d love to hear yours along the way.

When you are managing a chronic illness, there’s a lot of information to organize. Call me crazy, but I enjoy reading about other people’s organizational systems – I sometimes pick up new tricks, and sometimes just find validation for what I’m already doing. So here are some of the things I do.

Wagon #1: Health Journal

 Boy, did I resist this one at first.  I think it was my old friend denial again – I didn’t want to admit how major a part of my life my illness had become.  But when I was at various doctors’ offices, I had trouble remembering how long specific symptoms had been going on, how long I had been taking certain meds, etc.  I tried keeping a loose sort of log of symptoms, but found that my information was incomplete – I would often overlook or minimize things that turned out to be important.  So I finally gave in and bought this:

Health Journal

For a long time (and even now sometimes) I jokingly called it “The Hypochondriac’s Dream Journal.”  For each day, it provides two pages of space to write down all kinds of specific information, including front-and-back drawings of a human body for marking places that have pain, skin issues, etc..  My worry was that it would make me intensely focused on my symptoms, and sometimes I think it does do that.  But on the whole, it keeps me organized, and it’s been really useful for those doctor visits.  There’s a section in the back that lets me make notes about questions I want to ask my doctor, so I always go in prepared, and anything he/she asks me can easily be looked up.  It also doubles as a diet journal – there’s a whole section for recording what you eat, with blank columns so that you can choose to track whatever you wish (calories, fat, fiber, WW points, carbs, etc.).

Here’s what the inside looks like:

Health Journal inside

Since it’s designed for people with a variety of conditions, I don’t use all of it – for example, I don’t need to monitor my blood sugar.  I don’t write in it every day, either – just when things change.  Unfortunately, it’s one of the wagons I tend to fall off, especially when things are going badly.  It’s ironic – when I’m flaring, I seem to lose the will to keep this journal going, and that is EXACTLY the time when I most need to be keeping track of symptoms.  Anyway, I’ve started it up again, and ordered a new one for the new year.  I am also making it a goal to view the journal differently – instead of worrying that it will put too much focus on my symptoms, I would like to see it as a place where I can record them so I don’t have to think about them again.  Close the cover of the book and get on with my life…

Now, on to Wagon #2:  Managing my Medications

I haven’t fallen off this wagon, amazingly enough.  It’s been tricky lately because I recently had to start two new meds that must be taken twice a day on an empty stomach, while my other meds are taken twice a day with food.  Since “empty” is defined in this case as “no eating 2-3 hours before or 1 hour after taking,” this means that I now have to remember to take pills FOUR TIMES a day.  The morning dose of the new drugs is easy to handle – I just take them when I wake up and don’t eat for an hour.  The night dose, though, is no fun to schedule, especially if I end up eating dinner late. 

I’m pretty organized with my medications.  I take about 20 pills on an average day; some pills are daily, while others might be taken four times a week, once a week, or once every several weeks (like the Zyrtec I use to pre-medicate before Remicade infusions).  Then there are the “wild cards,” like the times when I have to do a pred taper or take an antibiotic.  I didn’t enjoy opening all the little bottles every day, so I decided to buy a pill kit and stock it every week.  I haven’t gone to a four-a-day one yet – I just keep the bottles for the empty-stomach pills next to my bed.  This is the pill kit I use for all the others:

Pill kit

Rheumatoid Arthritis Guy has a much cooler one, which he shows in this post.  Maybe for Christmas…  (Okay, that was a little depressing – I don’t want a pill kit for Christmas!) 

I found that all of the different pill schedules were getting confusing, so I also designed an Excel spreadsheet to help keep them straight.  I make a new spreadsheet every month – across the top are columns with the names of all the meds, and down the side are the dates.  Then I fill in the quantities of each pill for each day.  This also doubles as a medication record – at a glance, I can know exactly how many months ago I took that antibiotic, or how long I’ve been on a specific med.  I was going to show a picture of one of my spreadsheets here, but it was too big – and besides, I’d rather not post a list of my medications on the internet!  (If you really want to see one of the spreadsheets, you can ask me.)  On Saturday nights, my husband and I get out the spreadsheet and all the bottles and we stock my pill kit together - he opens the bottles for me, hands me the pills, and tells me how much of each one to put in.  Then he double-checks it for me, in case my brain fog has taken over!  Doesn’t that sound like a romantic date?  ;-)    

To help me remember to take my pills, I have recurring alarms set in my cell phone.  (Fortunately, my phone lets me store 5 different alarm times!)  The music I chose for my pill alarms is pretty, almost elfin.  Cheers me up a little, especially when my son dances to it.  Most of the time, I am home at the times when I need to take pills.  For those occasions when I have to be out, I bought myself this pretty little pill box for my purse:

Pill box

When I went onto Amazon.com to buy one, I was amazed by the incredible variety of available pill boxes.  They had them for just about every conceivable interest, and I considered ones with pianos on them, or cats, or ones with amusing photos of bad girls that double as condom holders.  In the end, I picked this one because I liked the image of the healing hands – I’m interested in things like Reiki and other energy healing modalities, and I thought it might be nice to store my pills in a place that gave them a little extra good energy!

Now for Wagon #3:  Keeping Track of Medical Expenses

This wagon could use some serious patching.  Before I had RA, this was something I never thought about.  A bill would arrive from a doctor’s office and I would pay it – simple.  I never thought to look for mistakes, and never looked at the EOBs the insurance company sent – I don’t even think I knew what they were for.  When I started developing multiple medical problems, all of this changed.  Also, we opened a Flexible Spending Account with a credit card attached, and the FSA people started asking us to provide receipts and/or EOBs to justify our expenses.  So it became important to pay attention. 

My insurance company’s website allows clients to download all of their EOBs, so I keep them in my computer and shred the paper ones that come in the mail.  I’d like to go paperless on this, but they haven’t offered that option yet.  Every Monday, I check for new EOBs, look through my inbox for new bills, and compare them.  And yes, I have started to find mistakes.  One doctor billed me twice for the same visit, one for procedures I never had, and the insurance company has occasionally failed to cover things they should.  So there can be quite a lot of work in tracking these things down.  I keep my bills, receipts, and other paperwork in an expanding file folder, which gets bigger all the time.  The FSA information is also online, so I check that too, making sure my payments have cleared and don’t require receipts.  If they do, I get them together for faxing.

I have to admit that I didn’t enjoy starting to check the EOBs.  The first time I saw my Remicade appointment listed as “chemotherapy,” I got pretty upset.  But reality has to be faced…

Even though I’ve gotten better at this, I’m still not good at keeping track of visits and remembering what happened.  My rheumatologist’s billing office is regularly MANY months behind, so by the time I get the bill for a visit, I can’t remember – did I get shots?  Have blood drawn?  Was it a Remicade visit or a regular checkup?  The bills are usually full of mistakes when I compare them to the EOBs, so it would be good to know exactly what really did happen. 

WarmSocks over at ∞ itis recently shared a snippet of the spreadsheet she uses to keep track of her medical visits.  (She has great organizational systems – she’s shared others before.)  What a good idea!  Given that I have spreadsheets for my pills, you would think I would have considered doing this before!  She keeps track of the date of visits, the provider, the purpose, charges, etc.  I’m going to borrow this and start one in the new year.  Since every insurance company handles things differently, I might modify the columns – for example, I have a PPO which covers only 90% of most procedures, so it’s important for me to have a column showing exactly what was done in the visit so I can see if it was charged accurately.  Anyway, thanks, WarmSocks! 

 I also keep copies of all of my lab reports, but have fallen apart a little on this – I designated a binder for them, but keep forgetting to put them in…

By the way, Jenni over at ChronicBabe.com offers a “Chronic Babe Toolkit” that has all kinds of useful suggestions for organizing your information, as well as a weekly “Goodie Bag” newsletter.  You can sign up for them here.

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?