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!

Year in review

Well, in the spirit of celebration and milestones, it's been about a year since I began to get very, very sick. Let me tell you the story. No, too long. Let me sum up:


November/December 2008: Began falling alot on trail runs. Initially chalked up to clumsiness, but hindsight gives me something to blame it on. Didn't realize it at the time, but was getting weak. Ran Memphis marathon on December 5 and never really recovered. Felt tired, weak, and sore all of the time. Thought I was coming down with the flu, or having some recovery problems. Had trouble doing basic exercises like pushups and ab work.


January 2009: Slippery slope. At beginning of month, could function for the most part. Was trying to run, go to work, etc., although feeling down. Fighting losing battle. As the month went on, got weaker by the day. By the end of the month, couldn't lift my arms over my head, couldn't pull items off of shelves in my kitchen, couldn't dress myself. Started wearing the same clothes for several days in a row. Barely walking.


February 2009: White flag up, I surrender. Can barely walk or stand/sit on my own. Head won't lift off of pillow. Dangerously close to not being able to take myself to the toilet. Need serious help. Got in to rheumatologist. CK's 10,000. Had muscle biopsy in left deltoid, positive for Polymyositis. Began steriod/methotrexate regimen.


March-May 2009: Most days spent in extreme weakness. Waiting for drugs to do their work, trying to build up strength through exercise. Alot of time off of work, glad for my employer's support and flexibility. Family and friends helped me remain independent, drove me around, cooked, cleaned, and spent time with me. Awash in fear, gratitude, heartbreak, and anticipation.


June-August 2009: Good enough to function with normalcy in daily activities. Exercise progressing, especially strength training, helping immensely. Running more and more. Starting to look like myself again: gaining weight back, muscle tone and skin color improving.


September 2009-present: For most purposes, feel "normal". Am close to doing all of the activities that I enjoyed before. Have done some challenging physical activities such as multi-day running/camping trips, and a few longer runs. Ran some satisfactory 10K times. Still feel some symptoms: occasional "tired" or "heavy-feeling" muscles... some days I feel like my legs are churning but I go nowhere, cartoon-style; pain in my quads; hands still stiff and missing some range of motion. I get sore from activities more easily now, it takes me a little longer to recover. Have tapered prednisone to under 10mgs/day, so a little nervous about the next several months. Still on high Methotrexate dose, my liver flirts with high enzyme levels occasionally. Planning on doing some spring racing, notably the Sylamore 50K and Boston Marathon.


It took about 6 months to become functional in my usual roles, and another 2 or 3 to put the cherry on top and really engage in my favorite things. At this point, I am pretty satisfied. If I were to "be" like this for the rest of my life, I would consider myself lucky. However, I'm pretty sure it doesn't work like this. I get nervous every time I feel a little weary or experience some muscle soreness. After each drug reduction, I experience a few days of weakness before I feel my own strength picking up again. Somewhat like the sensation of flying... at initial takeoff, you dip just a little bit before you feel the thrust carry you upward. This sensation scares the hell out of me every month when I take one less pill. When my fingers get too cold, I wonder what kinds of organs/tissues my immune system is raging against at this very moment. When I notice my eyebrows get a little thinner, I wonder if or when Polymyositis will adopt the same permanence in my body that Alopecia has.

I have become very interested in autoimmune disease. Most reasons are selfish... obviously, I'd love to see research breakthroughs that might enable me to live a long, healthy life without having to go through roller-coaster cycles of disease flares, each time leaving your body a little weaker and more damaged. But also, when you look around, you notice people with these diseases who are all fighting; each battle epic, each flare a physical and emotional trial. There are so many of us out there.

So many trails...

Here is a video clip that my friend made after a trail-running trip to the Smokies during the long Thanksgiving weekend. That's right... I took a trail-running trip. My friend and I did about 50 miles through various parks in central and eastern Tennessee. The highlight was the 2 days we spent in Great Smoky Mountain National Park, which is where the snowy portions in the video are.

I had a Rheum appointment a mere 3 days after returning from this trip... and believe it or not, my CK's were normal.

http://www.vimeo.com/7954780

Inspiration guaranteed.

Velvet Jacket

When I was down and out earlier this year with Polymyositis, one of the simple pleasures that I really missed was being able to wear real clothes. As in, not the extra-large sweatpants and t-shirts that were all I could wriggle into with such limited movement. What's the point of wearing real clothes anyway, when you never leave the house and feel like you live in purgatory-on-earth? In a fit of sweatpants-backlash, I ordered a pinkish/orange velvet blazer from J Crew. I think the actual color title was "roasted red pepper", true to corny catalog copy. It's fitted, tailored, and perfect with trouser jeans and tall boots. I probably never would have bought it if I hadn't been feeling sorry for myself and wanted something that screamed "opposite of sweatpants!". It was worth it.

I read an article that discusses the use of symbolic elements to assert desired traits and group membership. My velvet jacket means that I am human again. I can dress myself. I have places to go. Same with those half-tights I bought a few months ago. I'm a runner, watch me fly. There's no place for half-tights in the sick world. And the GPS that I'm contemplating getting myself for Christmas would mean that I'm rugged and outdoorsy. Trailblazer! I see the pattern now. I think advertising professionals figured this out a while ago. Well-played...

Still holding up

End of October... not much to report in terms of the PM. Since last time, the Chile Pepper 10K came and went. It was fun. I felt strong and fast (ok, as fast as you can feel after you go out too fast in the first 2 miles and then try to hang on), and finished about where I usually do. 10K's are a tough distance... they're too short to get into a comfortable rhythm, but too long to sustain an all-out effort. Anyway, 6 months ago I didn't expect to finish where I did. I wondered if I could be happy doing events again without the feeling that I was "racing". But this resignation didn't have to happen. I felt legitimate: I put myself out there according to the ability level that I'm accustomed to, without any handicaps or caveats. It feels good to be a player again instead of a spectator. Now, on to endurance.

Am fighting my second head cold in as many months. They don't seem to be severe, just annoying and lingering. Don't know if methotrexate use has any influence on this situation, or if it would have happened anyway. Dipping to 9mgs of prednisone for the month of November. I take 12 pills a day. Wow. Ok, only 8 on non-methotrexate days. Still... they take up an entire drawer in my kitchen. I haven't had a single flare since I started tapering, just a little bit of a withdrawal syndrome where I had some fevers. Doc seems to think this is pretty incredible. And warned me to not get too used to such a smooth drug taper. Duly noted. I really don't perceive prednisone side-effects anymore, so I'm not as anxious for reductions as I was during the earlier days. In fact, I'm a little nervous as the pills get smaller and smaller. So far, so good.