Posts Tagged ‘Prednisone’

When Necking Just Isn’t Fun Anymore…

Wednesday, September 7th, 2011

Spine

Cool, huh? You can see my BRAIN! (Unfortunately, you can also see the fat rolls on the back of my neck – thank you, prednisone!)

So this is one of  many MRI shots of my neck. This one is pretty cool because you can really see the problem, which is right here:

Spine copy

C5 and C6, right in the middle of the picture – out of alignment, with bone spurring, and bulging a little bit into my spinal column. You can also see the problem in the X-rays, although they don’t show the spinal column issue:

Xray copy

There’s almost no space between those two vertebrae, and they are rubbing unpleasantly against each other and pinching nerves when they do. The spine guy said that he sees two different problems – one with the space between the vertebrae, and another involving arthritis of a facet joint. They are manifesting as two different sets of symptoms. The facet joint arthritis is apparently the culprit behind my miserable migraines; he was able to duplicate the problem in his office (which, unfortunately, meant suffering with the headache all day yesterday – ah, science!). The  nerve being pinched between the vertebrae is causing sensation loss in my right hand, which I hadn’t even noticed until the doctor did some tests yesterday. Ironically, I’ve been noticing a loss of function and dexterity in my LEFT hand when I play the piano – no clear explanation for that – and problems with my left wrist, mostly from a ganglion cyst. I guess they caused me to overlook the issues in my right hand!

Anyway, all of this isn’t that terrible. There are much worse things that can happen to a neck, and the doctor says this is pretty normal stuff – not even necessarily caused by the RA, although the RA certainly doesn’t help the situation. He has two different solutions for the two different problems and is going to start with the easier of the two - an epidural steroid injection, done in the OR under fluoroscopy. This doesn’t sound like a lot of fun, but I know people who have had them, and they really seemed to help. He thinks that this will take care of the hand, arm, and shoulder symptoms I am having.

Taking care of the headaches, however, could involve a facet joint injection, which might mean cauterizing some of the affected nerves to kill them off. This doesn’t sound like as much fun. Right now he’s planning to hold off on this – it’s possible that the epidural steroid injection will also help the headaches, so we’re going to give that a shot first. (No pun intended.)

I’m really not thrilled about any of this – shots in my spine don’t sound like a ton of fun. I’ve had steroid shots in my sacroiliac joints, feet, hands, and wrists before. But my neck? Ook…

I would love to hear from any of you who have had this sort of thing done!

And, just to leave things on a more fun note – one of my favorite MRI pictures! Is it me, or an alien? You decide!

alien

Something Meaningful

Thursday, January 27th, 2011

I have been waiting and waiting and waiting to post because I felt as if I needed to have something meaningful to say. Well, I don’t. So I guess I’ll just do a brief catching-up-type post and then hope that inspiration strikes at some point!

My dissertation defense was a success, so you can now call me Doc! It still feels really strange to be done after all that work and time. I’m a bit at loose ends, trying to figure out what to do next. I’ve had a long period of rest – more than a month – and am starting to feel as if I’d like another project.

As for the RA, things have actually been pretty good. My doctor did raise my Remicade to 8 vials, and it really seems to have helped. On the whole, I’m doing very well. I also got off prednisone completely, which was a bumpy experience, and I hope I can stay off it for awhile.

Not much else to add. I’ll try to write something more profound next time!

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.

Insufficient

Wednesday, February 3rd, 2010

funny-pictures-cat-is-losing-energy

My doctor is a smart man.

I knew this about him, but I was reminded of it this week.  When I called him with the symptoms I described in my last blog post, I really thought it was because my liver enzymes were elevated.  Last time they were elevated, I felt about like this.  But he knew what to look for.

The tests are back, and the answer is, in fact, adrenal insufficiency.  Both my cortisol and ACTH levels are in the basement, really alarmingly low.  While this can mean something more serious, like a pituitary tumor, the most likely explanation is prednisone overuse.  I’ve done three high tapers since December.  The sad part is, I am still flaring.  So I’ve been exhausting my adrenal and pituitary glands, and it’s not even working.

For right now, the answer seems to be to finish this most recent pred taper, then begin the process of getting off the stuff.  My doctor says that we will have to be very careful about my prednisone use from now on, and he will be monitoring the adrenal situation.  I’m not looking forward to the next several weeks (or, more likely, months).  I am already beyond exhausted, and getting off pred is never a picnic, even when there isn’t this sort of problem.  I know that I can expect a rough road ahead.  And even though I’ve always had a love/hate relationship with prednisone, and some part of me is delighted to put it behind me, it’s still scary wondering how I will cope with flares without it.

There’s also the bigger issue – why is my RA out of control right now?  I’m due for a Remicade infusion in a week and we are going to increase the dosage yet again.  If this doesn’t work, it may be time to say goodbye to this drug.  I am growing concerned that I’ve developed an immunity to it – it almost seems as if it was working better at lower doses.

But for the last week or so, it’s been all about the adrenals.  Yes, my RA is flaring and there’s pain, but the adrenal thing scared the heck out of me.  For a period of several days, I knew that my cortisol was low but was waiting on the ACTH.  All sorts of scary possibilities presented themselves, like Addison’s disease (which, thankfully, I do not have).  So I’ve been tense and exhausted and moody and impossible to live with.

Anyway, we’ll see where things go from here.  I’m seeing the doctor on Monday to talk about all of this.

Oh, and by the way, I wasn’t entirely wrong – my liver enzymes ARE elevated.  But they’re not as high as they were when I was suffering from symptoms last time, and they don’t seem to be responsible for this recent bout of exhaustion.  Still, something else to think about…

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

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.

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 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.

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