Pass the chap-stick...

Stupid disease. When the drugs are high enough I can often forget that I have some serious issues. However, I'm entering that phase in Prednisone taper (again) when little syptoms are starting to peek through. All of a sudden, everything is so dry I can't stand it. Eyes, skin around eyelids, inside of nose, inside of mouth, lips, fingertips. Flaky rash firing up around my eyelids. Muscle pain/cramps starting to be more frequent. They seem to be worse in the week or 2 immediately after I drop a milligram. Nothing that's terrible or that I can't live with, just annoying autoimmune overlap symptoms. The worst part is knowing that they are indicative of a larger problem that is closing in. This is my second time through the cycle. Part of me just wants to go ahead and just let the flare happen so that I can go up on drugs again, instead of having an uncomfortable 3 or 4 month gradual slide. But that wouldn't solve any problems, the whole point is to try and come off of Prednisone. Does any of this sound familiar? Anybody else on this roller coaster?

October

Or really, almost November. Fall flies, doesn't it? Too bad, because it's a great season. I'm a Libra, of course I love these months.


Let's see... I left you before the Midnight 50K in July. That one wasn't pretty. The only conclusion that I've come to is that the more I try to hone my hydration and energy processes, the harder I seem to crash. The Midnight 50 ended in some vomiting, alot of walking, me feeling stupid, etc. Oh, well... it's not July anymore, other things have come and gone.


Namely...



I did the Twin Cities marathon in October. It didn't disappoint. The last couple of months have been hectic (starting the school year both as a staff member and as a student), as well as fall fun-stuff (football games, kickball league...). So I treated myself and didn't train. I mean, I worked enough to keep my fitness base and make sure I could cover the distance. But I wasn't making myself miserable over the course of 3 months for a mere 10 or 15 minutes on a finisher's certificate. And the perfect excuse to not care where you finish... costume, of course!


You may recognize the Spoonbridge and Cherry sculpture from the Walker Art Institute in Minneapolis. This was actually an ideal running costume, as the spoon was polyester and very light, and the bulk was on top, leaving my body fairly unhindered. Ringing in my ears is a thick Minnesota accent drawling, "ooooo, it's the spoooooon!" (heavy accent on the o's... you know how it sounds). I had quite a few of shouts of "Go, Art!" and "Yeah, Minneapolis!". I also had a couple of sperms, an ice cream cone, and an R2D2. The 3:53 finish was a little slow for me, but even worse for all those folks who got beat by the spoon!

(can you see the stem on top?)

I also did some international traveling and my best impression of a desperate doctoral student trying to finish a dissertation. A good fall, so far. The meds seem to be holding for now. I'm at 7mgs of Prednisone and dropping 1mg/month. Last time things got hairy around 3 or 4. We will see!

Midnight 50K, the remix

My second attempt at a 50K post-polymyositis comes this weekend. My first attempt at Sylamore in February did not go well. Leg muscles locked up with about 6 miles to go. After having to repeatedly lie down on the side of the trail and wait for them to loosen up, I had to walk it in. I'm not certain, but I think dehydration played a role. This time I'll try to be a little more diligent with it, and try not to be too ambitious in the earlier miles. Especially since the forecast high in the area has hit triple digits. I missed this run last year, and was sad. It's a perennial favorite of mine. Something about running in your flashlight tunnel with the locusts pounding in your ears... it's a bit transcendent at times. Then again at other times, it's just plain hot and nasty.

One consistency I've noticed when toeing the line for longer events is a blatant uncertainty regarding what the next several hours will hold. Once again, I can confidently say that I have no idea what will happen. Nirvana? Despair? PR? A ride in the sag wagon? Which is interesting, because I am a very play-it-safe kind of person in real life. I love how recreation gives us an opportunity to lead double lives. To enable risk-taking in appropriate arenas. Leisure scientists refer to this as sensation-seeking. I call it "what was I thinking?" Or "I hope I'm laughing about this someday."

Catch you on the flip side.

K

Summer love

I'm lying in bed one night this week. Waiting to fall asleep, but it's not coming as easily as usual. Here's why:

I have a gi-normous chigger bite on my ankle that all of my willpower can barely resist. I can pinpoint the day and trail on which I sustained it. Arkansas forests are full of them in the summer.

I can't roll over very comfortably because I have a large burn on my shoulder blade. I learned the hard way that a hydration pack causes burns when worn without adequate coverage on a 21 (or who knows?) miler. It's in an inconvenient location, and I have a hard time keeping the scab intact. I'm embarassed that I didn't know how to handle my gear better.

I can feel my pulse in my toe. I bruised a toenail during the course of a long run, and pulled it off prematurely, almost like a loose tooth. It's gooey and raw. I wonder if I'll be able to get a shoe on in the morning. I wonder if I should cover it or give it air. Injuries to digits are disporportionately painful to their small size.

And as I try without much success to get comfortable, it occurs to me:

I love this.

Ouchie

Getting sore again. Calm and fairly normal-looking on the outside. Distress call on the inside. It's been 3 weeks since my prednisone bump. The first 2.5 felt great, but the water is starting to leak through the dam again. Sore, sore, and sore. In odd places, too. I can feel it even when I'm still. Which is probably the worst time, because I can ruminate over it more. Shoot. Next appointment in 2 weeks.

"Never a dull moment..."

... which is what doc said when my CPK came back elevated this week. I wasn't suprised. I had been feeling it for about a week or so. Same odd soreness that doesn't seem to correlate to anything I'd done recently. Same sensation of low-grade fever and general malaise. Hands stiffening inward. My knee has been sore and swollen lately too, just like the first time when it couldn't heal from a simple bruise. That knee is proving to be a barometer for the inflammation in the rest of my body. A few days in to a bump in Prednisone dosage, I feel better, but not "all better". Still sore and stiff, just not as much. We'll see where this goes...

2010 Boston

The 2010 Boston Marathon is in the books. I wasn't sure if it was possible for 24,999 other people to have as much fun as I did, but somehow, I think it happened.

(Got talked into the Friday night Sox game by some enthusiastic fans on the train.)

The weather was a little dreary Friday-Sunday, just enough to keep the tourism attempts in good balance with afternoon naps. Had a great Saturday morning run along the Charles River, and instantly wished I had taken my camera. As soon as we stumbled out of the hotel and got our bearings, we saw a collegiate crew meet getting set to go. Upon further exploration, ran through through some smart-looking MIT buildings and encountered Gisele (aka Mrs. Tom Brady) also doing a little Saturday morning jog. We think, anyway.


(Funny how an expo full of running shoes and energy drinks can make you so exhausted. You could navigate by the yellow bags all weekend.)

Clouds and drizzle gave way to a glorious day on Monday. The sun came out long enough to make the chill in the air tolerable, then dutifully went behind the clouds before it got too warm. I didn't notice much wind, and if anything, there was a bit of a tailwind. I boarded the parade of buses and felt a twinge of 'what-have-I-done' as we pulled onto the interstate on the way out to Hopkinton. The 2-wave start seemed to work well, as I left early enough to be comfortable, but not so early that I had to sit around and wait for hours. By the time I got off the bus and wandered around the holding pen for a little while, it was time for the first wave to start, and then those of us in the 2nd wave enjoyed a bit of a breather before it was our turn. The walk to the start was fantastic... all of the volunteers were lined up doing the slow clap and making us feel like superstars as we paraded to the corrals. I got up to my spot in the front of the 2nd wave just in time for the gun. The course is a gentle downhill the entire way, except for a few redeeming uphills during the 2nd half. Miles 1-10 felt great, and then I started to feel my quads. Through Wellsley (mile 12) and up towards Boston College (20ish) I was trying to balance fun and hand-slapping with some 'time to get to work and hope the wheels don't fall off' focus. I relished Heartbreak, it was great to go uphill for a few minutes. The crowds were amazing. I finished through the last couple of miles with that familiar feeling of needing to be done soon, but not wanting it to end, either. The last left turn onto Boylston was incredible. I still wonder how that crowd yelled with that kind of intensity for that long.

(The "Athlete's Village", aka the Hopkinton high school grounds. Happy to be in the 2nd wave, as this cleared out significantly not long after I arrived.)

(Going through Natick, around mile 10. I'm not great at photography in motion...)

(Wellsley College, around mile 12. The outstreched hand was the story of my day. What amazed me was that once you reached for one, 50 more immediately appeared. Although Wellsley was cool, the spirit award for the day went to Boston College.)

(Approaching the finish line on Boylston St. The left turn from Hereford to Boylston was absolutely amazing. More cumulative and sustained energy than I have ever witnessed at a sporting event.)

(Looking and feeling pretty darn good at the finish. Well, better than that guy behind me, anyway. I wore a bike jersey for the pockets, thanks to Team Cheerwine.)

Not that I'm counting, but I finished in 3:37:15, which was my exact qualifying time from December 2008. How funny. I had a great time. The trip was fun, I enjoyed myself, and the race was the highlight. I had said "once in a lifetime" all along, but what would be the harm in eating my words? To be continued...

Marathon time!

Ok, getting excited! I've been looking forward to going to Boston for a while, but now it's time to stop planning and start packing. Leaving on Friday, the race is on Monday, and then I'm off to California for a work conference. The weather forecast looks to be close to ideal, although maybe just a little on the warm side. I've got to admit, I'm a little nervous. It's hard enough to trust your training without having major autoimmune disease issues. I mean, is my swollen knee (see picture, it's the left one) and recent outbreak of foot blisters my body's way of warning me against doing this? Or is it merely my mind playing games with me during a taper? During this phase in training, it's not uncommon to suffer panic attacks over phantom body issues that would otherwise not even be on the radar. My certainty is that I have no idea what will happen. PR's or DNF's be damned, my most immediate concern is how I'm going to fit an entire camera into my shorts.

The plan is to leave Friday morning, arrive Friday night. Long travel day. Saturday is cruising the expo and then touristy ventures like the Freedom Trail and Harvard Square. Sunday is whatever I didn't hit on Saturday until it's time for the 1:30 Sox game. Monday is the race, after which I plan to do some heavy sampling of the local craft beers.

Ran about 6 miles today, 4 at a sub-8:00 pace. I want to say that I was just practicing my ideal race pace, but like I said... I have no idea what will happen after I cross the starting line. And today it was tough to make it through this workout, which should have been a pleasure cruise. Trying to chalk it up to the taper effect and not worry about it. My goal is twofold: 1) have a 26-mile party and enjoy myself immensely, but still 2) have a good enough race time to be happy with my "performance". Goal #2 is the geeked-out runner poking through, hopefully it doesn't ruin Goal #1. Catch you on the flip side, hopefully with lots of pictures...

Folly or intuition?

Let me start by saying: for the most part, no complaints. I'm not complaining. Or malingering, for any House fans out there. Or whatever you want to call it. There are too many horrible things going on in the world for me to spew my own dramatic woes over symptoms that are laughable to the observer.

But this thing is in my head.

I am at a barbecue, talking and laughing with my friends, but in the back of my mind I'm thinking: my quads really hurt and the skin on my lips and fingertips feels too tight. Doesn't anybody understand? Can't they see me wasting away towards disease? I want to tell somebody about it, but who would want to listen? I have skin peeling off of my fingertips and chapped lips? Big deal, we all do, it's been a hard winter. I have trouble seeing at night because my eyes are so dry? Welcome to the world of contacts and outdoor sports. But these changes are different. They weren't there two months ago, but now they are. Such small, subtle changes but they feel like lead on my shoulders.

In my mind I'm starting the slow march towards mixed connective tissue disease. I'm beginning a chronic, progressive disease pattern. I can see the demons in my immune system. They are building strength, and piece by piece destroying me. In a year or two I might not be the same person. Doesn't anybody understand that? I'm floundering on the inside, but the outside looks normal. Doctors can only treat what they see... I don't have any heinous or obvious symptoms, no wierd rashes, no alarming bloodwork. But when I lie in bed at night, it's all that I think about. I've been worrying more and more lately. For as wierd or ambiguous as it sounds, I feel a certain darkness.

I hope I'm wrong. I hope I'm over-dramatic. These symptoms are nothing to the outsider. I look great. I'm running a marathon on Monday. Try to explain that anything is wrong when you're living it up at the Boston Marathon. But it's there.

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!