Archive for November, 2009

Beauty in Strange Places

Saturday, November 14th, 2009

methotrexate

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

Stivers-10-8-05-Acceptance

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.

Mothering

Sunday, November 8th, 2009

mother_baby

My mother lives 2856.2 miles away.  I looked it up on Mapquest.  I found it strangely comforting that there were only 29 steps in the directions, even though some of them involved staying on roads for 500 miles or so.  The map that accompanied the directions, though, made me a little sad, since it showed the entire continent with a red line across it indicating the driving route.  Only 43 hours and 23 minutes to drive there, assuming you don’t sleep or eat…

In spite of the 2856.2 miles, my mother and I are very close.  We talk on the phone every night.  Sometimes we Skype, although that’s mostly so she can see her grandson.  We see each other at least twice a year, usually for several weeks at a time.  She has been there for me through some very difficult periods in my life.  Whether I go to visit her or she comes to visit me, she takes care of me.  Now that I have a husband and child, she takes care of all of us.

The other day, we were talking about my recent realization that I need to be kinder to myself.  I’ve been thinking about this a lot lately.  When I wrote about it before, my focus was on appreciating my own efforts more, and letting go of the self-criticism that I often fall into.  She agreed that this was important, but added that I also need to start taking better care of myself physically.  She pointed out that I often don’t get enough sleep or eat well enough.  Then she said, “You need to start being your own mother.”

My first reaction to this sentence is to think of things like “nurturing your inner child.”  Blech.  Not my style.  But when I get past the “blech” reaction, I find myself with an image of a divided self – a rebellious toddler on the one hand, and a strict, overly-critical, disciplinarian parent on the other.  Strange, since this isn’t the kind of mother I actually have.  The rebellious toddler thing, though, might be more on the money.  Sometimes I have trouble being a grownup.

I do know some things about mothering, though.  I have a beautiful son.  He is not even two years old yet, so there’s still a lot about mothering that I haven’t experienced yet.  But I do understand mother love.  More than anything in the world, I want my child to be healthy and happy.

There are a lot of things that I do for my son that I don’t do for myself.  He eats a very healthy diet, abundant in fruits and vegetables.  He has special bedtime and naptime routines that send him off to sleep happy and comforted.  Aren’t these things I could also do for myself?  Couldn’t I join my son every day in his afternoon fruit-and-yogurt snack, or pile vegetables onto my plate the way I do onto his?  And how much better would my life be if I went to bed at a reasonable time and created rituals that made going to sleep a peaceful and happy experience?

I’m not a perfect mother, so naturally there are areas where I feel I could do better by my son.  These are also things that would benefit me.  It would be better for both of us to get more exercise, and to see people more instead of staying in the house.  It would also be good for us to have a wider selection of low-maintenance activities on the days when I’m just not feeling well enough to go out and do those things.  Even on the lowest-energy days, I could choose to lie in a lounge chair on the patio instead of on my couch, so my son could at least get some fresh air and sunshine while he plays with his trucks. 

So maybe it’s not really about finding some mythical “inner parent” to take care of my “inner child.”  Maybe it’s just about focusing on the kind of real mother I want to be to my real child, and then extending that kind of care to myself.  Somehow, when I think about my son, things become much clearer and simpler.