Tuesday, March 23, 2010

March 2010

In learning that there really is no neatly-packaged definition of "remission", I will consider myself thus. In making this decision, I have based it solely on the way that I feel. For the most part, I feel as normal as I can (although a few minor discomforts here and there), and am pretty much able to run, jump, and play as much as I want. A few big "howevers", however.

First, I am still on all of the original medications from my disease onset. I have tapered Prednisone to 5mgs/day, and am still on the maximum MTX dose, which is 20mgs/week. I don't know, (and am really scared to find out), what my body would do to itself without these drugs. I also worry about my immune system finding a way around these drugs. My immune system is apparently strong and crafty, and doesn't want to take no for an answer.

Second, (and this is the big one), I have a small sense of doom in the back of my mind. This disease is playing mind games with me, and it's got me right where it wants me. I have alopecia totalis (have had it since childhood), and while on high-dose Prednisone and Methotrexate, my hair, eyelashes, and eyebrows grew back. It was great. Now, they're all gone again. In addition, the Reynaud's that showed up a few months before the Polymyositis onset is back again. It's a frequent part of my daily routine to have to find someplace to warm up my hands, because they've turned yellow at the slightest chill. These are signs that my immune system is raging as strong as ever. I have this horrible feeling that it's a matter of time before the balance tips and it attacks me in another serious way.

But, who knows? That day isn't today. Every day there are scientists working as hard as they can to help us.

On a different note, I had a great time at the Germantown Half-Marathon over the past weekend. Despite a 20-degree temperature drop and torrential rain during the event, I ran a 1:35:40. This is a pretty darn good time for me, probably because I couldn't feel a single part of my body, other than my lungs. I've been working at my training for Boston, which is in a month. I have enjoyed seeing the tangible parts of the training through some decent fun-race times. It's hard on your body and mind to be doing goal-oriented training, but it is fun to exploit those times when you're fast and you know it.

On on!


  1. Hi KH... Small world! You passed me up in the last quarter mile and I finished just behind you in 1:35:53. Wow... what miserable weather that was! Congratulations on your great race and good luck in Boston!

  2. You don't know what the future holds. Just conquer one day at a time