Wednesday, October 10, 2012

50 milers and chest x-rays

I'm here, I'm here.  It's been a while.  I am not as good of a blogger as I would like to be.  I actually enjoy unplugging when I am away from work, and when I'm healthy, that means running, biking, friends, kickball, tailgating, and the like.  But that doesn't mean that everything has been hunky-dory.  Although it hasn't necessarily been bad, either.  Here is what I've been up to...

I attempted my first 50-miler in July.  It was along the Tahoe Rim Trail in California.  I wouldn't say that I "trained" as much as I "prepared".  Meaning that I didn't follow a specific plan outlining certain mileage targets every week.  Instead, I aimed to complete a few key workouts during the couple months leading up to the event.  Namely, I wanted to do a day-long run-walk, and I also wanted to stack some long runs on back-to-back-to-back days.  And I managed to accomplish both of those to a certain degree of satisfaction.    Another Tahoe runner and myself did a 9-hour run-walk on some trail and dirt roads around White Rock Mountain, which turned out to be perfect because it gave us some long uphill climbs and descents.  I also tried to hit the 50-mile target during a 3-day weekend once or twice, and I got a few of those under my belt. The event itself was stunning, challenging, and invigorating. I have realized that I should probably create a separate race report page.  I find myself wanting to tell the longer story of events, primarily for my own benefit so that I can remember the journey.  But I realize that most people don't want to hear about tripping, puking, cramping, etc.  Look for it in the future. 

(California on the left, Nevada on the right)

(Happy finisher!)

I had a bit of an upset stomach between miles 30-45, and was doing alot of walking in those miles, but surprisingly, felt better in the last 5 miles or so, and was able to run fairly decently on in.  I was a little on the slow side, but was primarily happy just to finish.  It's not often that I'm entirely happy simply with a finish, so I'm savoring that self-forgiveness before my next big effort, whatever that is.  I spent the next week bopping around San Francisco with my brother and best friend, splurging on sushi, Giants games, and Athleta summer clearance sales.

(Hwy 1 towards Carmel)

So take an eager vacation-goer, add a condo full of athletic friends and energy products, too little sleep, a 14-hour run, and an ensuing week-long party in San Francisco... and you have the makings for an epic round of bronchitis.  I came down with it on vacation at the end of July, and am still coughing up the last dredges of it in mid-October.  Ugh.  Over the years, prolonged respiratory infections have seemed to be the biggest side effect of Methotrexate/Arava.  If I get so much as a cold, it will develop into full-blown bronchitis/sinus infection/whatever other maladies travel back and forth between sinuses and lungs.  And it lasts for months.  But finally, finally, I seemed to have pulled out of it.  I basically missed the months of August and September... spotty work attendance, sporadic and light exercise, limited social engagements (who wants to sit next to the bald girl clutching a hanky and coughing uncontrollably?).  I was worried for a few weeks there about lung damage or involvement, but so far I think I've escaped that scariness.

So here goes!  I'm ready to live again.  I would like to do  the Memphis marathon again this December, and have started training for that.  I found out over the summer that my Arava dosage was low (10 mgs).  Pleasant surprise there, I'm not sure why I didn't know that I had been on a beginner's dose this whole time.  In an effort to get lower than 8 mgs of Prednisone, we are bumping the Arava up to 20 mgs/day and decreasing the Prednisone by 1 mg per month.  I haven't had a flare since last summer, but since then my CPK has been up and down, and in general, a bit unpredictable. 

Changing the subject, thank you for reading.  In general, when I don't post very often, it means that I have gotten preoccupied  with other ups and downs of daily life.  I find myself not knowing what  to say, other than that I am often flattered to think that I can be a voice of reference or empathy.  I think that reaching out to others is one of the best things that we can do.


  1. I enjoy reading your updates because, while I'm not a runner, I love knowing that someone with this disease does run - and long distances at that!

    I have ILD with my Poly bc of double pneumonia that was the start of my diagnosis, so no Methotrexate for me. I take Prograf/Tacrolimus instead while I wean from Prednisone. I'm down to 17.5 mg from 70mg in May. I also take an antibiotic 3x a week bc of that whole 'catch a cold on immunosuppressants and watch it explode' factor. I just survived my first head cold w/o it hitting my lungs. I worry about my first flare even though my cpk has stayed in the 40-60 range.

    I'm so inspired that you're doing so well & it makes me feel good about how things are going for myself. Hopefully you stay well!

  2. Hi Jennifer! I get scared about ILD. I think I've seen that it affects about 60% of PM patients... does that sound right? I've never heard of Prograf/Tacrolimus. I used MTX for about 2 years, and then it stopped working. I've used Arava since, and have been having success so far, but I worry about how long it will last. Running helps me to live as normal of a life as possible without feeling "sick". Thank you so much for reading. When I first got diagnosed, I was so lonely because of the rarity of the disease. I searched frantically for anyone to read about or talk to. Good luck on your continued Prednisone taper. You are over the worst part, in my opinion. I had withdrawl symptoms around the 40-20mg line. Then everything seemed ok on the reductions below 20.