Posts Tagged ‘Acceptance’

Don’t Let The Door Hit You…

Monday, December 31st, 2012

Goodbye, 2012. I will not miss you.

It’s been a humdinger of a year. The last few months have been especially brutal. So much of what has happened has been outside my control; this is always a hard thing for me. Attitude is important, but the fact is, sometimes things are just bad. And sometimes it’s important to be able to say so. So I will: Many things this year have been bad, and I was unable to do anything about most of them.

I am ready for a new year. I will do my very best to fill it with good and wonderful things. I am counting blessings and concentrating on the things I can control.

I want to thank those of you who have stuck around and are still reading this blog! I will try to make it worth your while this year.

Two Graduations

Friday, May 20th, 2011


As some of you know from reading this blog, I completed my doctorate earlier this year. This week, I attended my official graduation ceremony (pictured above). It was an incredible day on so many levels.

There were times when I thought it would never happen. I entered my doctoral program as a young, healthy single woman. I left it as a married woman with a child and RA. In many ways, my memories of my years as a doctoral student are inextricably tied with my journey with RA. I struggled with the label “disabled,” fought against the idea of using the disabled services offered by my university. This struggle lasted right up to the end, when I accepted a disabled parking permit for my graduation day but still insisted on walking in the ceremony itself, instead of taking disabled seating. I also did something foolish – at the end of the ceremony, my friends got impatient with the logjam at the steps leading down from the bleachers where we were seated, and opted instead to jump down the bleachers themselves. I jumped with them, and paid for this decision with two days of pain. Maybe this was worth it for the chance to feel like a regular, non-sick person for a day. Or maybe it just shows that on some level, I still wrestle with denial.

Either way, I am still amazed that I made it. I was diagnosed with RA and also got pregnant during my first year in the program. I had to learn to slow down, pace myself, accept the reality of a later graduation date than I had originally anticipated. I learned to use voice-activated software and used it to write a large chunk of my 227-page dissertation. I also had to balance all of this with taking care of a baby. Nothing went quite the way I planned it – but I finished, and now my son calls me Doctor Mommy. 🙂

There was also a second graduation in recent months, one that was a little harder to take. I graduated from this:

new disabled temp

 …to this:

new disabled perm

Logically, I know that this is a good thing. With the temporary permit, every six months I had to deal with the logistics of getting the documentation from my doctor and then endure a miserable, frustrating trip to the DMV, plus pay a fee. Now I can renew by mail in two years, without having to provide any more documentation or pay any money. But still, the idea that I am “permanently disabled” is hard to swallow.

The reason this came to pass is that the law in my state says that a person cannot have more than six consecutive temporary permits. The fact that I have means that I have been using disabled parking permits for three years now. That, too, was hard to face. I really never stopped thinking of myself as “temporarily” disabled; I guess the state sees it differently. I know that this doesn’t mean anything from a medical perspective, but it was sobering to realize that it really has been that long.

In time, I would like to be grateful for the second graduation and the conveniences it brings. For now, I will focus on celebrating the first graduation.

My Inner Geek

Thursday, June 17th, 2010


Okay, I’m about to reveal my true geeky nature to my blog readership… any fellow geeks out there?

Lately RA has given me (or forced on me) quite a bit of couch time, and I’ve been using some of it to catch up with reruns of Star Trek: Voyager.  Although I was a faithful follower of Star Trek: TNG, I never got interested in Voyager when it was actually on.  I started watching the reruns somewhere in the middle of the series, and they’ve come and gone on different TV stations over time, so there are still early episodes I’ve never seen.

For those of you not familiar with Voyager, the basic premise is this: The Federation Starship Voyager, while on a mission to track down a renegade enemy ship, is swept by a powerful alien force into a distant part of the galaxy called the Delta Quadrant.  The alien responsible for this promptly dies, leaving the crew stranded.  Traveling at top speed, it will take them 75 years to get back home.  The enemy ship is there too, and the two crews decide to join forces and make the journey together.  (There’s more to it than this, but this is the basic idea.)

Recently, I was watching one of the first-season episodes – the sixth episode, actually, which is titled “The Cloud.”  At the beginning of the episode, the captain, in a log entry, says, “Our journey home is several weeks old now, and I have begun to notice in my crew, and in myself, a subtle change, as the reality of our situation settles in.”  She discusses this with her first officer, and he mentions that the crew is going through a natural grieving period.

I don’t know why, but this really struck me.  A grieving period.  Suddenly, I realized how much Voyager is like life with RA.

In Voyager, the crew’s whole life is suddenly changed by a force outside their control.  They are light-years from the lives they knew, and may never get back there.  They have to learn to coexist comfortably with enemies.  They have limited resources, and need to learn to use them carefully (spoons, anyone?).  The future is a giant question mark.  Their relationships change, too.  In a later season of the show, when the crew finally finds a way to communicate with people back on Earth, they find that some people have given them up for dead and moved on with their lives, while others are still waiting faithfully.  They also form new relationships with each other and with new people they meet during their travels, some of which are stronger than the ones they’ve left behind. 

But what interests me most is the captain’s approach to the mission.  Her primary goal is to get her crew back to the Alpha Quadrant, and she never gives up hope that this will happen.  At the same time, though, she takes advantage of the opportunity to explore this new part of the galaxy, even though doing so sometimes takes them further away from their goal.  She also encourages the crew to make their lives happy and enriching along the way.  They don’t spend every moment focusing on the need to get back home.

Sometimes, especially in the early shows, the crew believes that they have found a way home, and are crushed when it doesn’t pan out.  (This always reminds me a little of Gilligan’s Island.)  As the show evolves, less time is spent on this kind of plotline, and more on the life they have built for themselves in the Delta Quadrant.  And yet, this isn’t accomplished by giving up on the goal.

I’ve often wondered if this is possible with RA.  It seems like the perfect way to be, really.  On the one hand, I never want to give up on the goal of remission.  On the other hand, I don’t want to be so obsessed with it that I miss the opportunity to make my life as rich as possible, right here, right now.  If the Voyager crew had spent all seven of their years in the Delta Quadrant focusing on nothing but getting home, it would have been a boring show.  It also would have been boring if they had given up hope and settled on a nice planet somewhere.

I guess I just wish I knew for sure whether or not I’m going to get “home” someday.  But that’s not the way it works in real life.

The Acceptance Experiment

Friday, March 19th, 2010


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.

Perfectly Imperfect

Sunday, March 7th, 2010


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. 

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.

Beauty in Strange Places

Saturday, November 14th, 2009


This is a picture of methotrexate as seen under a microscope, from the National High Magnetic Field Laboratory at Florida State University. You can buy a poster of this image here, along with many other cool pictures of things you’ve probably never seen this close before.

I keep this picture around to remind myself that it’s always possible to look at things in a new way.

When I first started taking methotrexate in the spring of 2008, it was the enemy, pure and simple. I had given birth to my son four months earlier, and to me, starting this drug meant nothing but loss. It forced me to stop breastfeeding much earlier than I wanted to, and I knew that I wouldn’t be able to have another child for as long as I was on it. Since I’m not exactly young, I also knew that this might mean closing that door forever. It also meant facing the reality of my RA, something I hadn’t had to do during my pregnancy remission.

This weekend I read the journal that I kept during that time. I was going to quote some of it here, but the feelings are too painful, too raw. I feel sorry for that girl, who was emotional from postpartum hormones, physically and emotionally sore from weaning too fast, grieving the end of a special connection with her baby, frightened of what was to come. When I finished reading the journal, I pulled my baby (now almost two years old) into my arms and kissed his soft cheek. I wished I could go back in time and tell that girl that it would be fine, that he would be happy and healthy and that we wouldn’t be any less connected after he became a bottle-fed baby.

For the first several months, methotrexate was truly rough.  I took it once a week, and that day was always a disaster.  I felt vaguely nauseated and achy all day, with a headache and a funny feeling in my throat, kind of like the way you feel when you’re first coming down with a miserable cold.  When I brushed my hair, large amounts of it fell to the floor.  I was short-tempered and argued with my husband, who was confused by the change in my personality.  Worst of all, I became fuzzy-headed, couldn’t concentrate, couldn’t remember things, couldn’t make decisions.  This also threw my husband for a loop – he was used to a wife who knew what she wanted, felt, and thought.  I would become angry when I tried to read a book I had been reading the day before and found I could no longer follow the plot.  I would tie myself in knots over a simple choice, like Cheerios vs. eggs for breakfast.  I would cry like a baby when I read or heard about anything sad. 

Finally, my husband and I came to the realization that this was simply how methotrexate day was going to be.  Trying to will myself to be different just resulted in frustration and tears, and the effort of trying to go out and do normal things just made the malaise extend to the next day.  So we decided to honor methotrexate day by making it a day of rest for me.  First we moved it to Saturdays.  This made me sad at first, since it would mean missing out on fun sometimes, but it simply didn’t work on weekdays.  Then we developed little rituals to make things nicer.  We would go to the library in the morning, before I took my pills, and pick out a selection of light-hearted books (nothing with a complicated plot) and fluffy, fun movies.  (Since methotrexate gave me the attention span of a flea, we knew I would probably jump from one to the other during the day, so variety was important.)  Then I would spend most of the day on the couch, drinking lots and lots of water.  My husband always dressed our little boy in an “I Love Mommy” onesie (we have several now, in different sizes!) and kept him happy and entertained, bringing him to me for cuddles and kisses when I needed them.  Sometimes, after our son was in bed, I would go to the keyboard and work on my songs.  For some reason, I could focus when I did this, and even forget that I was feeling sick.  Since my emotions ran close to the surface, this was also a way to get them out. 

I did stop losing my hair once I increased my folic acid.  Other than that, not much really changed – I still felt the nausea and malaise, still couldn’t focus or make decisions.  But somehow, methotrexate day had been transformed from something terrible to something almost pleasant, a day to slow down and care for myself.  At one point, I had to stop taking methotrexate for a few months because of an infection, and I actually missed those days.  One day, I found the picture of methotrexate under a microscope.  (I had been doing a search for a picture of the pills, since the ones I had gotten from the pharmacist looked different than usual.)  I started visualizing the drugs not as an enemy or a thief, but as something helpful, maybe even beautiful.

Okay, not completely.  I still would rather not take it – wouldn’t anyone?  In some ways, it still feels like an enemy and is still associated with loss.  But I did learn that it’s possible to find beauty even in a situation that seems completely bleak.  And even though it seemed impossible back at the beginning, I have adapted.

Hmmm… maybe, in some ways, I’m closer to acceptance than I thought…

Acceptance or Giving Up?

Friday, November 13th, 2009


I saw an article posted on an RA discussion board recently.  The headline read, “Acceptance of Chronic Illness Helps People Move On: Hoping for recovery may actually prevent happiness, researchers say.”  The article went on to explain that there is a “dark side” to hope, since it sometimes keeps people from getting on with their lives and making the best of their situations.   

This leads me to a question I have often pondered:  What is the difference between acceptance and giving up?  People use words like “fight” and “battle” to describe illness – as in “So-and-so passed away after bravely battling cancer for years.”  As seen in the example I just gave, “battling” is no guarantee of winning.  Yet society seems to expect it of sick people.  It’s seen as “braver” to “battle” a disease rather than accepting it.  But with a chronic disease like RA, is this really the right idea?

On the other side of things, dealing with RA is often viewed as a grieving process.  Since the disease is progressive, the stages of grief are sometimes visited again and again as we lose abilities.  The five stages of grief, as defined by Kubler-Ross, are denial, anger, bargaining, depression, and acceptance.  I’ve shuttled back and forth between the first four, never quite reaching the fifth.  But the article I just read suggests that acceptance is an important part of being able to move forward.  A lot of other people with chronic illnesses agree, and say that their lives are better and happier since they have stopped fighting reality and decided to adapt instead.

Recently, I was talking with a friend about my RA for the first time.  She was very understanding, since she had known someone with RA.  But when I mentioned that I had a cane now that I rarely use, she exclaimed, “Don’t use it!”  Then she explained that using the cane would send a signal to my brain that I needed it and make me dependent on it.  She talked some more about the power of the mind and spirit to influence the body, and urged me to fight the disease. 

Sometimes I agree with this.  This is why I fought so hard when my physical therapist urged me to begin using wrist braces and a cervical collar.  (Well, that and my denial.)  I also fought the concept of getting a disabled parking permit, which I now use and appreciate.  I fought the concept of buying clunky but comfortable (and expensive!) Dansko clogs, which are now the only shoes I can wear without terrible foot pain.  Did the shoes create dependence? 

My husband would say no, and remind me that I was limping around, unable to walk any sort of distance, until I got those shoes.  He reminds me that all of the adaptations I mentioned came about because they were NECESSARY.  The cane, too, was necessary when I got it.  It isn’t anymore, and it sits in a corner.  Doesn’t that prove that I didn’t become dependent on it?

I don’t know where the line is between “battling” the illness and just plain denial.  I don’t know where the line is between “acceptance” and giving up.  I know that I would like to settle these issues so I can choose a path and commit to it.  Right now there’s a certain amount of waffling around and second-guessing that wastes mental energy.  I think I am afraid of choosing wrong. 

I think that something exists out there that embraces the best of both – accepting the reality of the illness while still hoping and working towards a possible future without it, or at least with a lasting remission.  I have no idea how to get to it.  I know that it’s not much fun for me, going from denial to anger to bargaining to depression and back again.  I’m clear on the fact that it’s not healthy for me to chase pipe-dream “cures”.  I know that whenever there’s a med change and I tell myself, “This time it’s really going to work for good,” the disappointment is sharper when it doesn’t.  I also know, though, that positive thinking is good.

I have no answers here.  I guess I’m just using this space to wrestle with these thoughts.