Posts Tagged ‘Medications’

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…

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

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.

Launching

Saturday, August 29th, 2009

So here I am, blogging.  I’ve never been much into the concept of blogging – I’m a pretty private person.  But things have changed since the onset of my RA – I’ve been helped so much by the blogs of other people with this ridiculous disease, and it occurs to me that maybe I can help someone else.  So away we go…

I’ve been a musician all my life.  With the exception of some summer temp jobs when I was in college, I’ve never held a non-music job.  It’s not an easy way to make a living, and I worked ridiculously hard for years and years.  One summer I worked as a pianist and coach for an opera program, and I played the piano for nine hours a day, seven days a week.  I have a small frame, and my body took a beating – tendonitis, repetitive stress injuries, even a long bout of thoracic outlet syndrome.  But I kept going.  In 2006, I was again working seven days a week, this time at about five or six different jobs, with lots of one-time gigs scattered here and there.  I even worked on all the major holidays, since one of my jobs was at a church. 

Then I developed rheumatoid arthritis.

Some other time, I’ll tell the story of exactly what happened.  For now, it’s enough to say that it changed everything.  Suddenly, working seven days a week was no longer possible.  I was waking in the morning to find that yet another finger had gone stiff and swollen overnight.  I began stumbling over notes at the piano, having trouble concentrating in rehearsals, becoming cranky with my fellow musicians.

So, as I saw it, there were three things I could do:

1. Deny that anything was wrong and push through as best I could, relying on shots and steroid pills to get me through my performances.
2. Give up music and find something else to love.
3. Find a way to adapt and keep music in my life.

If you have RA, you can guess how well #1 worked.  I was surprisingly lucky for a long time – somehow, I managed to get through the performances that were important to me.  But I finally had to accept that I needed to slow WAY down.

I tried #2 for a little while, during times when I couldn’t work.  Sometimes being around music and musicians was so painful that I thought it might be best.  Going to the opera made me incredibly sad, and I stopped listening to classical music at home.  I didn’t touch the piano when I didn’t have to.  But something important inside me wasn’t being fed.

So for now, it’s #3.  I’m still a working professional musician, but I now teach more than I play, and work only a few hours a week on average.  More importantly, I’m spending a lot of time thinking about the nature of music-making, and looking for ways around my physical limitations.  I also spend a lot of time thinking about the concept of perfection.  Classical piano is a perfectionist art, or at least it was for me – many hours of practice went into polishing a piece of music until it was as nearly perfect as possible.  When I made mistakes in public performance, it was a cringeworthy experience.  But mistakes are more likely now, and it’s harder for me to play technically difficult classical pieces than it was before.  Someday it may be impossible.

In the middle of all this struggling, I started writing music of a completely different kind.  I guess you could call it popular music – I don’t know what specific category my “sound” falls into, or even if it falls into one at all.  It is surprisingly hard for me.  Writing music might seem like a natural thing for a trained musician to do, but sometimes all that training, all those ideas about what it means to “compose,” all that perfectionism can really get in the way.  But somehow, I’ve come to feel that it’s important for me to do it anyway.  I’ve lost a lot of things to RA; now I want to start gaining some things. 

So this is what this blog is about, at least for now.  It’s a place for me to wrestle with my thoughts about RA, about music, about art in general, about my new role as a baby songwriter, about whatever else might come up.  It’s also a place for me to share the music that comes out of this. 

It’s also not going to be a “perfect” place.  Sometimes I am philosophical, or even positive, about the RA and all the changes in my life.  Other time, I am angry, rebellious, sad, self-pitying.  Sometimes I’m irreverent, politically incorrect, or crass.  All of that will probably show up here, because I want this blog to be real.  I find that sometimes I’m helped by reading blogs where other people are being brave and creative in dealing with their illness, but other times I am comforted by seeing that other people go through the same anger and pain that I do.  I don’t know yet what the balance will be on this blog – it depends on what happens to me, and how I feel about it at the time.  Life is messy; art is messy.

Here, then, is the first song I ever wrote about having RA – it’s called “Don’t Let Me.”

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