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.

Kickball

Ok, so adult league kickball is hilarious. The best part: I kicked, ran, threw, and in general, acted like a 12 year-old.

The downside: I am not 12. I was more sore than I have been in a long, long time. From kickball. Initially, I had a little freak-out. A downside of being constantly active is that I never know whether I'm sore from the activity or whether something wierd is happening with the disease. A few days later, I'm feeling better. Still sore, but it's working itself out. Crisis averted. A little embarassed, but relieved.

Alopecia

While we're at it, I've decided that I'm not done talking about alopecia. I was recently asked why I'm so open with it. The answer was simple: it's kind of hard to miss. Aside from simple visual logistics, though, there are other reasons. In order of lighter to deeper...

1) I can do the things that I want to do much more easily. I can sweat and get dirty without worrying about it. I can hang my head out of a car window and feel the sensation of 50 mph on my face. I can jump into the river/lake/pool whenever it looks good. I can get ready in 15 minutes.
2) It feels good to be open. I always felt like I was hiding something by wearing a wig. No more shock and awkward explanation when you find out that I'm *surprise!* bald.
3) I sometimes feel that it endears me to others. Most of us have some kind of imperfection, insecurity, flaw, issue, or whatever. Mine happens to be out there in the open. It's obvious that I'm a little different, so it's ok if you are too. Tell me about it. I might understand.

One reason (among many, of course) that my muscles and athletic pursuits are so important are that they give me confidence. I didn't always feel this way about alopecia. I used to think that it ruined my life, that I could never be truly happy because happiness meant that I had to have hair. But age, experience, and wonderful people have taught me otherwise. And it turned out that validation and self-worth come from way better sources than hair. I grew to be confident without it. Being good at sports helped. So, you see, I need my muscles. I'd have to start all over again and find something else to make being bald not so bad.

September 09

I have a cold this week. No big deal, hopefully. This will be my first cold on immune suppression. I had an infection back in April, which came on quickly and severely, but which went away just as quickly once I took an antibiotic. We will see.

I am trying 10 mgs/day of prednisone this week. I'll hold here for a few weeks until my next appointment. I still perceive eye pressure, which has been one of the most prominent side effects that I have sensed. It isn't as severe or constant, but when my awareness is brought to it, I can feel it. I am starting to lose the hair that steriods put on my head... it's strange. My eyebrows and eyelashes are thinning already. That didn't take long. The alopecia rages on. I thought maybe my immune system being turned down would hold it for a little while, but it doesn't seem to be the case. I am a little sad. I sometimes blame being bald when things feel like they're missing in life, if I am feeling lonely or un-pretty. It's not so bad, though. Everyone experiences these emotions sometimes, and I lead a charmed life, not in spite of alopecia, but often because of it.

I started physical therapy to restore range of motion in my fingers, hands, wrists, elbows, and shoulders. During my onset, I had some clawing in my hands and my elbow joints flexed inward. I gained some extension back on the steriods and once I started moving more. I have loosened considerably, but not entirely. I may be wrong, and I hope so, but I get the feeling that this might be a lingering, perhaps permanent issue. It doesn't hamper my functionality, it's more of a comfort issue at this point.

I am running about 20 miles per week, and trying to mix in some speedwork. I get sore frequently, I find myself wondering every time if it's me or the disease. I don't remember feeling muscle soreness this often before the disease onset. More fodder for self-imposed mind games. Despite muscle soreness, I am enjoying a nice rebound of strength, speed, and endurance. Of course, I haven't come close to really testing myself, and it will be a long time before I feel comfortable enough to do this. I still feel that something is "missing" (hard to quantify, which is strange because I am a very empirical person). I am a little nervous moving forward beyond 10 mgs/day of prednisone. This is tricky and uncharted territory... this is where the disease likes to flare. I am ready to dive in, which is easy for me to say while I'm feeling strong.

Life is good today. I find myself worrying about everyday issues such as writing my dissertation, minor work stresses, and missed training during this cold. These are the wonderfully mundane worries indicating that life is moving on, and I am able to move with it. Please, please, let it hold.

Kinesthetic memories

I remember saying this past spring that I wanted the whole onset of PM to be a bad memory someday. Well, regardless of what tomorrow brings, I can confidently say that today, it actually has become somewhat of a memory. By this, I mean that I actually tried to reach back and remember what it actually felt like to not be able to get myself out of bed, on/off of the toilet, or reach my own feet or head. I don't mean remembering what happened and what the experience was like (that part is vivid), but remembering the actual kinesthetic sensation. What it actually feels like to not be able to utilize your muscles. It's more difficult than it sounds, kind of like the way that you can only remember what it feels like to run a marathon by running another one, and then wondering why you felt the need to revive that memory in the first place. Can you remember how it feels to:

• Try and raise yourself with your arms from a lying position? Who ever knew that your body weight was too great for your arms to support? How in the world did you get stuck on the floor beside the couch when you tried to get up but your core muscles didn't work, and your arms were too weak? You plopped back down, facefirst, and now you're stuck. The only way is to roll off onto your knees and hope that you can pull yourself up somehow, which is a risk because if you couldn't get yourself off of the couch, how in the hell are you going to get yourself off of the floor? You could just wait for your next visitor to come over and hope you don't have to pee before then. As you can tell, I'm an expert on strategy. I tried to raise myself out of the pool this afternoon, a simple move that is upper body strength-based. I still couldn't do it. Thought I was going to get rescued by a lifeguard for a second there, not too far off from my mother having to pull me off of the floor the first time I attempted the aforementioned "rolling off of couch onto knees" technique. The kinesthetic memory came back in a rush. (Points for using the word kinesthetic 3 times in this post, but I like it. Now 4 times.)
• Or how about throwing something small into the trash can, basketball-style? The object only travels a couple of feet and falls pathetically short of the can, even though you heaved it with all your might. Airball. I remember getting some laughs when I did this in a meeting at work. I can actually still remember what my arm muscles felt like trying to perform this specific movement.

Now I mainly feel stiffness and the occasional odd muscle pain. Like I've mentioned before, I feel something almost like guilt over my strength renaissance. I reach for these memories because I don't want to take anything for granted or leave anyone behind. Revelation: I lamented over my lost athletic identity for months. Have I acquired a disease identity? And am I actually trying to maintain it? For what purposes? I'm sure that there are some adaptive mechanisms at work here, if nothing else, perhaps to soften the shock if/when there is a flare or another disease. There is perhaps a social benefit too, such as the desire to reach out to others who need a kindred spirit. How could we be kindred spirits if we put the whole thing behind us at the first chance we get? No, thanks... we need the kinesthetic memories (5!).