Remicade Dream

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…

Tags: Acceptance, methotrexate, Self-care

This entry was posted on Saturday, November 14th, 2009 at 6:47 pm and is filed under Uncategorized. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.