Her Diamonds

By Remicade Dream April 2nd, 2010, under Uncategorized

“Her Diamonds” is a song by Rob Thomas, written about his wife’s struggle with an unnamed “lupus-like” autoimmune disease.  I first discovered this song back in July by reading Rheumatoid Arthritis Guy’s blog, and was impressed at how well it captures the essence of a couple living with a disease like this.

So why do I bring it up now?  I’ve been going through a rough time physically, and strangely enough, this song has been following me around.  After a long period of not hearing it anywhere, it suddenly seems to be everywhere, and appears at times when I’m having particular trouble.  I was driving home from a difficult and painful bodywork session when it came on the radio, and I pulled into a parking lot and cried.  Then on another day, I was in the drugstore filling a new prescription, which felt like a defeat since I’ve been trying to reduce meds, and there it was again.

Rheumatoid Arthritis guy writes about it here, and he also includes a video that shows the words to the song if you’d like to read them.  But I want to show you the other video, the “real” one.  To me, it seems to capture perfectly the feeling of being trapped inside a body wracked with pain and fatigue. 

YouTube won’t let me embed it, unfortunately, but here’s the link:

Her Diamonds

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The Acceptance Experiment

By Remicade Dream March 19th, 2010, under Uncategorized

Bunsen-Beaker-web

I was feeling tired and fed up last week.  I felt that my world was getting smaller all the time because of this stupid RA, and I was sick of it.  Then I read this post by Rheumatoid Arthritis Warrior, and I could really, really relate.  I would have loved to just press that eject button RA Warrior described – just quit the whole damn thing – but, of course, I couldn’t do that.  Still, I needed a break, and badly.

So I started thinking about what kind of break I could take.  I’ve done the Denial Experiment before – the one where I decide that for a week, I will just act as if I don’t have RA and live life like a normal person.  Well, that one never lasts long – by about the third day (often even sooner), my body lets me know that it just ain’t gonna happen.  So what could I do instead?  And exactly what kind of break did I need?

I thought about the things that were bothering me most, and the main thing that jumped out at me was this: RA had become the central fact of my life.  When I wrote about my world getting smaller, one of the things I said was that I no longer had anything to talk about with friends except illness, and that illness just isn’t that interesting a topic to most people.  Also, I know someone who talks about nothing except her aches, pains, and health problems, and I can’t stand to listen to her.  She’s never happy, never positive, and never interesting.  I don’t want to be her.  But lately I have become exactly that person.  (My husband kindly points out that no, I haven’t – the person I’m describing complains but never does anything to try to make it better, and keeps putting off surgery she’s needed for about three years now.  So okay, I’m not EXACTLY the same as her… but still.)

So I decided that RA was just plain getting too much airtime in my life.  My husband agreed that we seemed to spend most of our time talking about it and almost nothing else.  I was getting tired of listening to myself sound whiny.  I was spending too much time every day reading RA blogs and discussion boards.  I was feeling exhausted and burned out and didn’t want to post on my own blog.  I just needed a mental break from the subject of RA.

Here’s what I decided to do:

If denial didn’t work, maybe acceptance would.  Just for a week, I would behave as if I had already reached the acceptance point, and RA had become an integrated part of my life.  I would take my meds every day, do the things I need to do to take care of my health, not push myself too hard or pretend I didn’t have RA.  But I would also stop talking about it.  If I had a bad flare, I would tell my husband that I wasn’t doing well and would ask for help, but then I would stop complaining.  If I talked to a friend and they asked how I was doing, I would give a very short, honest answer like “About the same” and then talk about something else.  I would also stop reading RA blogs and boards, just for a week.  It would be, I hoped, like hitting a reset button.

So how did it go?

First, I learned that I really do complain a LOT.  Complaining words were on the tip of my tongue way too often.  So I think it was good for my marriage and my friendships to cut back on this.  

But it was hard, too.  Really hard.  Three days in, I had a day when I was in a lot of pain, and I didn’t say anything.  By nighttime, I ended up crying.  (I rarely cry.)  My husband gently reminded me that the idea of the experiment was not to pretend I was fine – it was okay to say that I was in pain and needed help.  So I did, and found that saying it once was enough to get what I needed.

I learned that I really DON’T  have enough other things in my life.  It was hard to find things to talk about.  It also felt good when I actually did find topics, and my husband and I had better conversations this week than we have in awhile.  We both really needed to talk about something else, and I think we still do. 

Another discovery was that I really, really, REALLY missed the RA blogs and boards.  They have become a big  part of my life, and cutting them off left me feeling isolated and sad.  I do think that I’m on the computer too much, and that I need to cut back, so I really shouldn’t be checking them as often as I do.  But they serve an important function in my life.   

I’m still not sure exactly what I learned.  I felt both better and worse this week as a result of pushing RA to the background.  I guess the main lesson was one of moderation.  I need the RA online community, but I don’t need to check for new posts several times a day.  I need to vent, but not all the time.  I need to be honest and speak up when I am having trouble, but I don’t need to repeat it over and over.  And when I’m burned out and need a break from the whole thing, the Acceptance Experiment seems to be a better choice than the Denial Experiment.

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Perfectly Imperfect

By Remicade Dream March 7th, 2010, under Uncategorized

mother_child_79

I learned about a new blog today, written by a woman with RA who is contemplating becoming a mother and is eager to connect with other women who have been through this.  It’s called “RA (maybe) Mamma” – I’m also going to add it to my links on the right side of the page.  (Thanks to RA Superbitch, one of my favorite bloggers, for bringing this blog to my attention!)

Oh, there’s just so much I want to say about this subject!  I haven’t talked that much about being an RA Mamma, mostly because I wanted to focus on my musician-self when I started this blog.  But so much of my RA journey has been entwined with my motherhood journey.  I haven’t written my onset story yet – saving it for the time when it feels right – but I was diagnosed with RA the same week I learned that I was pregnant with my son, who is now two years old.  So I have been learning how to be a mother and a person with RA at the same time.

Unfortunately, I’m going through a difficult low-energy patch these days, and can’t give this subject the attention it truly deserves.  So, for now, I’m just going to cut-and-paste in an essay I wrote for a class when my baby was four months old.  I don’t mention RA in this essay – partly because I’m very private about it, and partly because I was still struggling with deep denial at that point.  There’s a brief allusion to “medical issues” - I’m talking about the RA there, and needing to start RA meds.  Anyway, I figure you can read this essay and filter it through the lens of knowing I am a mom with RA. 

I hope to be able to write more about this soon - it’s a subject close to my heart, especially since I am contemplating having a second child.

So here’s the essay:

Perfectly Imperfect

On December 2, 2007, at 1:18 AM, two people were born in the same hospital room.  One of these people was a baby boy named Christopher.  The second person was someone called “Mom.”

Even though I had spent almost nine months preparing for the birth of that first person, I don’t think anything could have truly prepared me for the birth of the second. Over the past four months, I have watched myself struggle to integrate my old self, someone I have known for years, with “Mom,” who often surprises me with her thoughts, feelings, and actions.  Before I had my baby, I had many ideas in my head about what it meant to be a mother, and about what kind of mother I expected to be.  As it turns out, some of these were accurate – I play the piano for my child, laugh and play with him often, and love him as wholeheartedly as I ever expected.  Other things, though, have surprised me.

I expected that movie-moment in the hospital – after hours of sweaty labor and pushing, coached along by nurses and my husband, I would hear the baby’s cry and see his first squirming moments. The doctor would put him into my arms and I would burst into tears, my heart full of instant love for this little person.  Childbirth classes had prepared me for something earthy, painful, but rewarding. Instead, the day arrived two weeks early due to an unexpected pregnancy complication, and all my preparation and ideas about the birth went out the window. There were no contractions, no water breaking, no labor, no pushing – just consultations with specialists and the news that my baby should be delivered as soon as possible.  I never used the iPod that I had loaded carefully with my favorite music, or any of the “comfort items” I had planned to use during labor; I barely got my suitcase packed with the essentials. Christopher came into the world in a scary, brightly-lit operating room, via C-section.  I was wide awake and terrified, numbed from the chest down, and there was a sheet hanging mid-torso, so I couldn’t see anything that was happening.  I heard the nurse exclaim, “Look at all that hair!” and I heard the baby’s first cry. After what seemed like an eternity, my husband came over with the baby in his arms and showed him to me.  I couldn’t hold him since my arms weren’t working yet, and I could barely comprehend that this was my baby.  Then he was taken away from me.  I was wheeled to the recovery area and put on a morphine drip, and I spent the next few hours in a narcotic-induced fog, wondering where the baby was.  Over the next few days in the hospital, still heavily drugged and in lots of pain anyway, I struggled to get to know my baby.  I was frequently confused about who he was; he bore a striking resemblance to my younger sister at birth and even had the same name, Chris. I repeatedly referred to the baby as “she.”  Not exactly the start I had envisioned for us…

At home, I had to stay in bed to recover from the surgery, and I watched, feeling helpless, as my husband and my mother cared for my son.  I felt completely useless as a mother and sometimes felt disconnected from the baby in a way that disturbed me.  The only job I could really do was breastfeed him, and that wasn’t going well at all.  He had developed jaundice and was sleeping all the time and refusing to eat.  He lost a lot of weight and his blood tests didn’t look good, so we went back to the hospital a few days later for UV light treatment.  My mother and husband both suggested that I stay home, but to me, it was absolutely unthinkable.  I think it was that night that I truly became a mother.  My husband and I shared a fold-out chair meant for one person, while our baby slept next to us in an incubator under bright purple lights.  I cried when I saw the IV needle in his little leg.  I was nauseated and weak myself and could barely walk, and I knew that the sensible thing would have been to go home and get the sleep I needed. Instead I stayed all night, rejoicing in the morning when his blood tests came back improved.  In the end, we all survived the experience, and that terrible night brought home to me just how much I loved this little stranger, and how much I would sacrifice for him.     

On a hot July day two summers ago, my now-husband knelt down in front of me, pulled a beautiful diamond ring out of his pocket, and asked me to be his wife “through the perfect and the imperfect.”  He said this because he knew that we both suffered from strong perfectionist streaks.  Growing up, if I got a 99 on an assignment, I wanted to know where the missing point had gone.  Becoming a musician only enhanced this tendency, since so much of our time is spent going over fine details in a practice room, trying to create something of perfect beauty.  In an otherwise-good recital, I would find the mistakes and agonize over them.  My husband knew this about me, and about himself (although in different ways), and with those simple words, he created a space for me in which I didn’t have to be perfect to be perfectly loved.

I am an imperfect mother.  Sometimes I do a great job of multitasking, but there are plenty of days when taking care of the baby is all I get done, while housework and schoolwork pile up around me.  There are other days when I get the other things done and feel that I have given the baby short shrift.  Sometimes I watch too much TV when I am home alone with him.  Some days I forget to get his bottles ready ahead of time and have to scramble while he screams for food.  Once an old lady scolded me in the mall because my baby wasn’t wearing a sweater or socks.  (Okay, so it was eighty degrees out, but still…)  I have had people, once someone who wasn’t even a mother, demand to know what is in the bottle I’m feeding my baby, then lecture me about how evil formula is.  This one really hurt; I was forced by a medical issue to stop breastfeeding my baby after only three months, and I was completely taken off guard by the depth and intensity of my grief over this loss.  (My baby, on the other hand, was fine – happy, healthy, and thriving, he took to the bottle immediately and never seemed to suffer.)  When I look in the mirror, I see the extra pounds I have yet to shed, the stretch marks on my untoned belly, the scar from the C-section.  I have become one of those annoying moms who takes a million pictures of her child and talks about him constantly.  I have temporarily lost whole chunks of my personality and former interests, and have become someone who will talk in great depth and detail about baby poop with my mom, my husband, and anyone else who will listen.

Yet amid all of this imperfection, I am deeply, intensely happy.  I have watched my husband morph easily and naturally into an amazing, devoted, loving father. I have found a new fierceness in myself when I have advocated for my son’s health care.  I have become more proactive and, in spite of being scatterbrained and forgetful, have become more organized in subtle ways.  And most important of all, I am slowly learning to let go of my lifelong desire for perfection.  Instead, I savor the little joys that come every day.  Although I may not do everything (or even most things) perfectly, when my child sees my face, he lights up and smiles a smile of pure delight, and I know that one way or another, I am the perfect mother for him. 

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The Incredible Shrinking World

By Remicade Dream February 26th, 2010, under Uncategorized

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.

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The “D” Word

By Remicade Dream February 16th, 2010, under Uncategorized

handicap

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.

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Insufficient

By Remicade Dream February 3rd, 2010, under Uncategorized

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…

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Something’s Not Right…

By Remicade Dream January 25th, 2010, under Uncategorized

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…

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Open Letter To Myself On Prednisone

By Remicade Dream January 17th, 2010, under Uncategorized

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

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To Sleep, Perchance To Dream

By Remicade Dream January 11th, 2010, under Uncategorized

picasso dream

Last week I looked in the mirror, and saw an old woman.

It was truly startling, since I am not, in actuality, an old woman.  I studied my reflection and tried to figure out what was making me look so old.  My face is much rounder and heavier than it was in the days B.P. (Before Prednisone), but that’s been true for quite awhile.  My body is heavier too, but there are plenty of heavy women out there who don’t look old, and anyway, I’ve been losing weight.

Then it dawned on me.  I looked TIRED.

Beyond tired, really.  Exhausted.  There were heavy bags under my eyes, my skin looked dry and lined, and most importantly, there was no energy in my face.  I looked at myself and realized that I AM tired.  I think I’ve been trying to pretend for awhile that I’m not, but my looks tell the truth.  There are other clues, too.  My caffeine intake has been gradually creeping up.  I had come close to giving it up completely, and didn’t even notice this reversal until my husband pointed it out.  Of course, I snapped at him – another clue. 

I read somewhere that people with RA need more sleep than other people.  I also think I remember reading something about disturbances in the sleep patterns of people with autoimmune diseases, something that explains why we can still wake up exhausted after what seems like ample sleep.  I would love to find these things and link you to them, but, well, I’m just too tired.

Fatigue is a ridiculous term for what we experience.  It sounds so mild, so ordinary.  It doesn’t describe the bone deep exhaustion that sometimes makes me unable to lift a fork to my mouth, or makes me forget things like my own address.  It’s also a symptom that isn’t discussed much by doctors.  It’s slippery, less treatable, something that isn’t always reflected in blood tests, something that doesn’t always go along with visible joint problems.  There are also some articles about this, but again, too tired…

It’s also probably my number-one symptom, the one that recurs more often than the others.  Sometimes I wouldn’t even know I had RA if not for the fatigue.  Sometimes I’m going along, doing just fine, and it comes out of nowhere and blindsides me, destroying my plans for the day.  And I don’t really know what to do about it.

Some people say (and I’ve generally believed) that symptoms like exhaustion are messages from the body, and we should listen to them – in this case, get more sleep.  But how do you interpret the messages when they’re coming from a system gone haywire?  Doctors used to treat RA with bedrest, and the patients generally ended up completely disabled.  Now they tell us that we should stay in motion, try to exercise consistently even when the body wants to do nothing.  How do we do something so counterintuitive?

I do think that I need more sleep.  I think, in this particular case, that my body is calling me on my recent attempts to behave as if I don’t have RA and run around doing all sorts of “normal” things.  I’ve been in a flare for the past few days, and seem to be getting worse.  The exhaustion preceded the flare – a warning, maybe?

As you know if you read this blog regularly, I’ve been in an angry phase lately.  When I’m tired, my anger descends into petty irritability.  Instead of using it to spur change, or to move through the phases of grief, I start doing things like being snide with the girl behind the Starbucks counter.  Not like me, and not productive.  Didn’t make me feel any better, either – worse, in fact.

I’ve been thinking for awhile about my sleep habits.  To be honest, they’re not great.  A lot of this has to do with the fact that my husband and I are both night owls, with years of late-night habits behind us.  He likes to work late at night, and I like to read.  “Liking” to read is a huge understatement – I read the way other people eat.  When I get into bed with a book, I can’t stop after one chapter – I have to read until some important plot point is resolved, or sometimes even until the end of the book.  I also don’t like to go to sleep until my husband is in bed, and he has just as much trouble with self-discipline as I do. 

However, we are now parents of a toddler.  Like most toddlers, he likes to get up early.  This doesn’t mess me up as much as it should, since my husband is the one who gets up with him and takes care of his morning routine.  He does this out of consideration for my RA, since mornings are usually a bad time for me.  I don’t know why the lack of sleep doesn’t affect him more, but somehow it doesn’t.  It’s killing me, though.

So, like it or not, I think I have to fix this.  I need to start going to bed earlier.  I need to stop reading so much at night, or read things that are much less interesting.  I like the idea of creating a bedtime ritual – maybe candles, music or a relaxation CD, moisturizer for my skin.  I need to do this whether or not my husband is ready to join me.  I need to accept that I simply need more sleep now, and do as much as I can to make it restorative.  If I can’t do it for my health, maybe I can do it for my vanity!

There will probably be times when it doesn’t matter whether I do this or not – the RA will bring on exhaustion anyway.  There will also be times when the RA brings its good friend Insomnia.  But I think if I did this as regularly as possible, it might help.  Anyway, it can’t hurt.

And then I can stop being bitchy to Starbucks workers.  :-)

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Rebellion

By Remicade Dream December 29th, 2009, under Uncategorized

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.

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