Archive for February, 2010

The Incredible Shrinking World

Friday, February 26th, 2010

Shrinking world 

This painting, by artist Shia Moan, is called Shrinking World.  It was exhibited as part of a show called Windows On Pain.  In this article, the artist is quoted as saying the following:

“People who live with chronic pain deal very literally with shrinking options in their lives. If and how they can work, exercise, socialise, travel. Usual activities are affected, all subjected to scrutiny: what is possible, what is not? They also speak frequently about not being able to communicate their pain, wearing a mask.”

When I was looking for a picture to go along with what I wanted to write today, I was amazed to find this painting, and that quote. It was exactly what I was trying to express. I literally entered “shrinking world” into a Google images search, knowing nothing about this painting, and up it popped.

I am bored.  Really bored.  So bored that I’ve been neglecting this blog, simply because I have nothing to say.  And the reason I have nothing to say is that my world is shrinking.

This is something I’ve known for awhile, but I became very aware of it a few days ago, when I was on the phone with one of my friends.  I called her because we hadn’t spoken in awhile, and I wanted to know what she’s been up to.  So I listened to her talk for a long time, enjoying her stories about her children and her activities.  Then she asked me, “And what’s new with you?”

Well, what could I say?  Another Remicade infusion, more blood tests, more doctor and physical therapy visits… besides that, nothing much.  I haven’t been anywhere interesting, haven’t been doing anything exciting.  Frankly, I haven’t been doing much of anything at all.  And that realization depressed the heck out of me.

Chronic illness is BORING.  Sure, there are exciting and dramatic moments, like when something unusual pops up on a blood test or a major flare hits.  (Of course, this is a kind of excitement I’d rather do without…)  But most of the time, at least for me, it’s just not that interesting.  Just a lot of exhaustion, lying around, canceling plans, not having enough energy to even think of something new to do.  It gets depressing.  And there’s only so much you can say about it to your friends.  “I’m still sick”  just isn’t that interesting as a conversational topic.

So my world is shrinking.  I don’t want it to.  I keep thinking that it doesn’t have to be this way – while I’m lying on the couch, I could be learning a new language, or listening to great music, or SOMETHING.  But I tend not to do these things.  I don’t know why.

I’m also starting to develop some habits that I don’t like.  One pattern I’ve noticed lately is that whenever I’m getting ready to leave the house, I always say to my husband, “I don’t want to go.”  It doesn’t matter where I’m going – work, a guitar lesson, a party.  Somehow, all the time I’ve spent by myself on the couch has created a sort of social anxiety in me.   It just seems extra-hard to pull myself together, go out and be with people.  When I do go out, it’s a mixed bag.  Every once in awhile, I’m sorry I went – sometimes it means that I’ve pushed myself too hard that day, or that week, and I end up paying for it.  But most of the time, I end up glad I did.  The world seems a little bigger and a little brighter after I’ve connected with people.

Sometimes there’s another kind of backlash.  I went out last week to watch some friends dance in a show.  I used to dance with them.  I had a really good time and really got into the show.  I was able to forget all about my RA for a little while, and started thinking, “Maybe I could do that again…”  This is a dangerous path for me.  The truth is, no, I can’t.  This type of dance is too rigorous, too joint-jarring, and my doctor has said NO quite clearly.  So this kind of thinking feeds my denial, sets me back.  I need to be out in the world, but that doesn’t mean I can go back to doing everything I used to do exactly as I used to do it.

I need to make my world bigger, or at least minimize the shrinkage.  There is too much sameness to my days.

The “D” Word

Tuesday, February 16th, 2010


On a lovely warm summer day in 2008, I was sitting in a restaurant with my sister-in-law.  She works at the same university at which I am a doctoral student, and summer classes had just begun.  I was nibbling self-consciously at my sandwich, aware of the 40 prednisone pounds I had gained since she saw me last.  All week, in fact, I’d been painfully aware of those pounds, experiencing again and again the shocked looks on the faces of classmates who hadn’t seen me in a year.  Since I was keeping silent about the RA, I had to live with the knowledge that most of them probably thought I had just let myself go.

My sister-in-law, who did know about the RA, asked me how I was doing.  I told her that so far, I was holding up pretty well, but I was concerned about my upcoming doctoral comprehensive exam.  Not because I was feeling unprepared, but because it would involve close to four hours of longhand writing.  There would be breaks, but still, I didn’t see any way I could possibly do it.

“You need to go register with the office of disabled student services,” she said, matter-of-factly.

Disabled?  Who, me?

“I don’t think those services are for me,” I said.

“Yes, they are,” she said.  “They do test modifications, so you won’t have to do the writing.  You’re entitled to them.  You need to do this.”

So, reluctantly, I went to the office.  They gave me forms and explained that my doctor would need to verify my disability before they could provide services.  So I called my rheumatologist’s office and spoke to his medical assistant.  And I have to admit, I thoroughly expected her to say, “No, those services aren’t for you – you’re not really disabled.”  But she didn’t.  Instead, she told me that this is done all the time for RA patients, and told me to fax her the forms.

About a week later, I was called in to the office at the university to meet with the director of disabled student services.  He stood up to greet me and held out his hand to shake, and it was immediately clear that he was blind.  Feeling embarrassed, foolish, and deeply fraudulent, I sat down in the chair across from him.

“So how can we help you?” he asked me.

I said, “I have rheumatoid arthritis,” and was surprised (and a little bit horrified) to find myself getting slightly teary-eyed.  Still deep in denial, I had said those words out loud to very few people.  I fumbled around for awhile, explaining that since it was still a relatively new diagnosis, I wasn’t really sure exactly what I needed – I had no experience with disabled services.  “A lot of the time, I’m completely fine,” I said.  “It’s just that sometimes, some things are hard to do.  But I don’t think I need much help…”

He was silent for awhile.  Then he said, “I always feel sorriest for students with conditions like yours.”

What?  This blind man felt sorry for ME?

He went on to explain that conditions like RA are hard to manage because they are both unstable and progressive.  Unstable, he said, because they change from day to day – you never really know how you’re going to feel, so it makes it very hard to plan, and also very hard to adjust.  Progressive, because they tend to get worse over time.  Then he told me the story of the degenerative illness that took his sight.  Each time things worsened, he had to adjust to a whole new set of modifications – first, getting larger-print books, then reading with magnifying glasses, then having someone read to him, etc.  Finally, he was completely blind.  “Believe it or not, things got easier then,” he said.  “I knew what the limitations were, and I could make permanent adjustments.  The hardest part was the way things kept changing, and it was kind of a relief when they stopped.”

I had a lump in my throat.

Then he asked me not to think about the days when I was doing well.  “I need to hear about things at their worst.  We’ll make a plan that fits those circumstances, and have it in place for you.  That way, it’s there if you need it, and you don’t have to use it if you don’t.”

I heard myself describing days when it seemed impossible to get out of bed.  I talked about the time when I had to have shots in the soles of both of my feet and couldn’t walk at all for two weeks.  I talked about swollen fingers that prevented me from being able to write longhand, and made typing painful and difficult as well.  I talked about the deep fatigue and brain-fog that made a four-hour exam seem like torture.  It sounded to my ears as if I were talking about someone else, someone who actually needed help.  Someone who just might be disabled.

He described the options available to me, and put all of them into the official plan, to be used as needed.  I was entitled to use voice-activated software for my doctoral exam, and would take the exam in an adaptive lab instead of with the other students.  I would be given extra time to complete the exam, as well as breaks “for fatigue and pain management.”  I also had the option of using a “human scribe.”  (This one seemed bizarre to me – my sister and I later cracked jokes about how she could be my scribe, and I would buy her a funny hat, snap my fingers at her (if I could) and call, “Oh, scribe!” when I needed her.)  If I needed to, I could take the exam over two days instead of one.  I was entitled to record lectures or have someone assigned to take notes for me.  I could even have a research assistant, who would run around the library gathering books for me.  I could get a disabled student parking permit once I got a regular one from the DMV (it had never occurred to me to do this).  I still couldn’t believe that I was actually entitled to these things, that I might actually need them. 

That was when my denial (the other “D” word) began to crack for the first time.  I went home after this conversation and cried for a long time.  I felt all kinds of things – strangely humiliated, sorry for myself, aghast and guilty that the director had felt sorry for me.  Still felt fraudulent, too.  And I was still surprised that it had gone so easily, that both the doctor and the university agreed that I needed all of this help.

The exam came and went, and I did end up using a few of the modifications.  I continued to feel guilty and horrible as I sat in the adaptive lab, using the voice-activated software, surrounded by students whose disabilities were more visually obvious than mine.  I also felt frustrated by how poorly the software worked, how the computer kept freezing up, how little tech support there was for this tiny little lab.  I started to understand that while it was great that the university offered disabled services, they still had a long way to go before things could be considered truly equitable.

Confession time here – I’ve always said this blog will be completely honest:  I am a college professor, and in the past, I felt a secret frustration whenever a student handed me a sheet from the disabled student services office, describing their test mods.  Of course, I always complied, and I believe I was always pleasant and professional about it, but every time I saw one of those sheets, I knew that it was going to mean extra work for me.  So it was hard for me to go to the professor in charge of the exam and give her my sheet, knowing that she, too, might be frustrated by the extra work.  Now, of course, I’m ashamed of those feelings.  (Do you think less of me now?)

A few months later, my sacroiliac joint flared up and I had to use a cane to walk.  One day during this time, I drove to the campus where I teach and couldn’t find parking anywhere except at the bottom of a big hill.  The only way up that I could see was a large concrete staircase with over 100 steps.  I hobbled up the steps with my cane and arrived at the top exhausted and in pain.  The next day, when the situation repeated itself, I found the “accessible” route from that parking lot – a long, winding wheelchair ramp up the hill.  Great for people actually in wheelchairs, but the distance was MUCH longer for someone walking.  So, finally, I bit the bullet and asked my rheumatologist to fill out the forms for a disabled parking permit.  And again, I was surprised when both he and the DMV granted it, easily and without question.  Seems denial was still alive and well…

Although my denial still comes out to play fairly often, things have changed somewhat since that time.  I have gotten used to the parking permit, and use it more often than I expected to.  I’m not quite guilt-free about it, so I try not to use it when I’m doing okay, and I still feel weird when people watch me getting out of my car.  I used the free disabled shuttle when I went to the zoo.  And a few months ago, I was in Costco with my toddler and a full cart when overwhelming fatigue suddenly hit.  (Don’t you love how RA does that?)  I went over to the customer service desk, smiled at the person there, and asked, “Is there anyone who can help me get my things out to my car?  I’m disabled.”  No tears in my eyes, no lump in my throat – the word came out surprisingly easily.  And the Costco workers were happy to help.


Wednesday, February 3rd, 2010


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…