Pedaling Uphill in High Gear

A few days ago I was riding my bicycle, and I truly felt awful.  It was like I was pushing my body beyond what it could achieve; having RA is sometimes like pedaling uphill in high gear.  My legs hurt, my bones hurt, my feet hurt, I guess you could say I just plain hurt.  This is not surprising as I was about one week away from the Rituxan infusion and I had skipped a week of taking Methotrexate.  When one takes those circumstances and add that it was 90 degrees plus when I started my little bicycle adventure; I suppose one could say it was an inevitable conclusion to the circumstances at hand.

The cycle of RA medication effectiveness

I use Rituxan and it never seems to last through to the end of four months.  Since I go for the infusion in three days, I am even having some difficulty typing this little post.  Most of us with RA know the drill; the Biologics are not stable action drugs.   Instead, they tend to cycle, helping us feel better gradually then waning gradually as the effect starts to wear out.  We feel better and worse on a fairly predictable yet frustrating cycle.

It is this cycle that leads most RA patients and me to chase those middle days.  Those days when we feel like we are human, and we can do the things or be with the people we love.  I know that is the goal of our doctors and people we live with but more than anyone else we want to be in those middle days.

Unfortunately, I am living a larger percent of the time not in the middle of that cycle.  That leads to some predictable outcomes as well.  I have started taking and increased the methotrexate dose over the last six months.  I am working on sleep and attempting to get more exercise all of which helps; but still I feel that inevitable decline that I wish I could just reverse.  It will, of course, lead to another drug at some point (I am not there yet) or some biological backlash that I do comes because too much drug has been applied and my body just decides it will no longer play that game.  Who knows what or when that may come, I hope not too soon.

RA makes things different

Somehow this made me think of my life as a boy and how much I loved to bicycle in the heat or rain, I was up for many miles.  I could ride all day and get up do it again the next day.  Sometimes 100 miles in a day, not for exercise, but just to figure out what was on the other side of the hill. Or what a neighboring community looked like or to say I had done it.I am no longer able to do that.   Now everything is measured, calculated, and considered.  As I get ready to turn 59, and I am in the waning days of this infusion I feel out of sync, not even myself, as I have come to be in the last few years since RA came into my life.

Just as I thought of all of that, a song came on my IPod with a profound lyric that describes exactly how I felt. The song is by Jackson Browne and is titled “Going Down To Cuba”.  Maybe it is that Sheryl and I are watching ‘House of Lies’ on Showtime (partially filmed this season in Cuba) or maybe it is because I have always wanted to travel to Cuba, mainly to see the cars and architecture, but this song lyric described how I felt at that moment.

Jackson Browne Lyric

The lyric is in the second to last verse:

If I told you once, I told you thrice

It’ll put a smile on your face to see a Chevrolet with a Soviet transmission

And that was exactly how I felt.  Like I was a Chevrolet with a Soviet transmission.  I felt as authentic as I could be but not with all the pieces of myself.  I felt like someone had modified me (the bicycle riding, hiking boy) to be hobbled because all the parts no longer fit.

Dear Lord help me make the parts work again soon, help me find that middle cycle.

-30-

rick

Take away for June 14, 2016

• RA medications do not relive inflammation all at once
• RA medications lose their effectiveness sometimes
• We spend lots of time getting better and worse
• Jackson Browne is one heck of a singer

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