Friday, February 28, 2014

Witch's Brew

This little witch's brew provided the moment of inspiration for my first attempt at a blog.  Staring at a soup pot full of ginger and peppermint, it occurred to me that running will never likely be quite the same.
Brief background: In October 2011 I ran the Marine Corps Marathon, loved it, and was determined to make running marathons a "thing".  I injured my foot fairly early in the race, but decided to try to finish it anyhow and deal with the consequence later.  After all, the assumption was that I'd heal within a few weeks and be back in the game.

Wrong. My foot didn't heal as expected, and over the coming months getting back to running became the lowest of priorities.  By the summer I had a sinking suspicion that a growing laundry list of quirks might be related.  Several upper body joints had started hurting, I couldn't think straight or stay awake, food allergies and sensitivities had gotten completely out of control, and I couldn't be in the sun for more than about 2 minutes without a painful itchy rash. For almost two years it was exceedingly rare to feel normal at all, and if I felt alright for a day or two I saw the sad look in husband's eye when I was would exuberantly declare myself "all better" while choosing to ignore the fact that the suffering would be back soon.

Somewhere in there I started on hydroxychloroquine, which made a dent in my symptons albeit a small one.  My rheumatologist offered methotrexate (MTX) as the next step, which sent me running in the other direction. I mean, sure, I didn't feel great and all but a chemotherapy drug? That's for people who are sick sick.  I made a bit of a bargain with myself: I would take 6 months to research and try natural remedies and behavior changes but if I couldn't get things under control within that period of time I'd put faith Western Medicine. That's another story in itself, but suffice it to say that I got my MTX prescription on January 31st, 2013. With a bit of a twinkle in his eye, my rheumy made sure that I wasn't going to start taking it until the next day (MTX means no drinking; it seemed appropriate to have one last New Year's celebration before going sober). Fast forward 8 weeks, and so far MTX has been little short of miraculous. Symptoms are still present to varying degrees, but my foot finally got better, I can think straight most days, and the joint pain and allergic reactions  have been downgraded from debilitating to annoying.

Since I have a bit of a "go big or go home" personality, I recently registered for the Baltimore Marathon.  I'm starting to train now even though it's over 7 months away, because the rational side of me realizes that I've only been "better" for only a few weeks and even within that time there have been some pretty bad days. But for years now all I've wanted to do is feel better enough to get back to running.  Running is my stress relief, my outlet for near-constant fidgeting, and my proof that I have some control over this body of mine.

This race holds a lot of meaning for me. The RA isn't going to go away, but if I can run 26.2 miles again, I think it will be the ultimate proof that I'm able  to cope, and to cope well. The RA and I can coexist, but I need to prove that I've got the upper hand. Only a few weeks in though, and I'm already realizing that training with RA is going to be a totally different game.

Lesson learned: one should not attempt a long run the day after taking a nighttime MTX dose. Or at least I should not, since drugs affect everyone differently.  While I'm taking a much smaller does than a cancer patient normally would, MTX is a chemotherapy drug and can cause the iconic chemo nausea.  I only take it once a week, so the timing is somewhat flexible and I thought I did a smart thing last week by taking it on Wednesday night, since Thursday is a light day class- and work-wise. Whoops! I had completely forgotten about it until I very suddenly became extremely nauseous and shaky about 6 miles into my long run on Thursday. My goal of 12 miles suddenly got swapped out for a new goal of flooding my system with as much ginger and peppermint as possible, hence the soup pot of tea. As I was willing it to boil and bring some much-needed relief, I had a bit of a moment of how different my life has become and how in some ways I've normalized it, but there are still moments of "this is really quite odd".

I've honestly been quite silent about my disease. Partly because in the thick of it I wasn't lucid enough to know what was going on. Partly because getting through the day didn't leave me with extra physical or emotional energy to process and communicate. And, of course, in party because I felt like "I hurt 24/7 and don't know how to change it" didn't seem like great conversation.

Now that I'm (fingers crossed) out of the worst of it, I'm excited to start this project as an opportunity to gather my own thoughts, document trials and errors, and getting in writing the best practices which are sure to arise. And if I manage to make any connections with new folks going through similar things are deepen connections with those in my life who have been somewhat out of the loops, even better.