Racing season

I previously mentioned wanting to plan some races in the upcoming months. We have had some gorgeously premature early fall weather lately, and I am itching to get into the primo running months that are coming up. I may be getting a little greedy, but here goes:

• Chile Pepper 10K: a challenging 10K on the local university cross country course in October. The goal here is to see how strongly I can run this. I have worked up to some double-digit-mileage trail runs, but am pretty slow. I want to see what kind of strength and speed I can get back. My PR on this course is around 45:00, I have no clue what a realistic expectation is this time around.
• Thinking about going back to Memphis in December, which is the scene of The Last Glorious Running Day that I had last year during the marathon. This event last year felt Flowers for Algernon-ish... the last beautiful ray of sun bursting over the horizon before the world is plunged into darkness. Considering the half-marathon. Again, hopefully by this time I am able to do strong, fast, high-quality miles, rather than simply finishing the distance.
• I have never done the Little Rock marathon. This might be a good one, since I don't see any marathon-distance races realistically happening before 2010. This is an early-March event, just in time to guage preparation for...
• Boston. Mid-April. There were times this spring when I wondered if I would ever walk again. And here I am planning this thing. I can't believe it. I am using words like "speed" and "marathon" with all intents and purposes. This is where I feel a little greedy... my eyes might be bigger than my running shoes. I've been feeling good lately, getting in the groove. I'm asking alot here, this is a pretty ambitious list. Why not let myself get excited over it?

The recovery feels a little tenuous at times, especially when I consider how I've adjusted my goals farther than I often thought possible. Have I overstepped it? Am I setting myself up for another crash? I am nowhere near stability in remission... am still on a dose of steriods that isn't sustainable. The future is a toss-up as I try to lose my crutch of drugs. In the movie Cool Runnings, during that last run down the sled track, the Jamaicans are going fast. They are exceeding everybody's expectations, even their own. They are going fast, faster, faster yet. It's going too well. The runners come off of the track a little bit, the turns get harder to hold. And then we know what happens next...

Another year

First day of the academic semester, 09-10. I'm glad to reach this point. If you don't know, I work at a University and can compartmentalize life & work into the seasons of the school year. I pretty much "lost" the Spring 09 semester: I went down hard with PM in January/February, and then spent most of March and April simply trying to become functional again with the basics such as walking, getting around my own house, and simple self-care. Over the summer, I slowly but steadily gained strength and functionality. I had hoped to feel full-strength and fully engaged by the time that the new school year came. I wouldn't say that I am 100%, but I feel pretty close in this context.
I still don't have much going on in the way of extracurricular activities... I can run several miles at a time, but my ability here isn't very consistent or dependable yet. Some days I feel strong and ready to go, other days an easy 5-miler is a hard day's work. I have lost a little bit of the fire that was under my seat with my training and physical work. At the beginning, I was so grateful to be able to increase my activity, and I could feel myself getting stronger. The pace of improvement has slowed as I have gotten closer to normal, so it feels more like work now, and is a little harder to keep at the grind. I find myself brushing off workouts much more easily now that I'm out of that honeymoon phase. I'd like to get that "edge" back at some point.
I am currently down to 20 mgs/day of prednisone. I have felt tired lately, and a little mentally dull. I am going to chalk it up to drug reduction, which has seemed to be the source of most of my physical tweaks. I am still walking the tightrope, and I often worry about where the disease is... how close the wolves are to the door.
This update is not very exciting, just a check-in. Things are going well. For the most part, I feel a sense of normalcy in life, which is really all that you want when things are so bad with your disease that you can't imagine a normal life again. That's not to say that it comes easily... there is alot of work and planning now that goes into performing daily roles. I still feel a sense of loss with the active, physical part of my self that I would love to get back. I have started to plan some races for the next year, and hope that I can see them through.
Next rheumatologist appointment is in 2 weeks.

More Recommended Reading

I read Donna Jackson Nakazawa's book titled The Autoimmune Epidemic. She presents theory regarding correlation between increased toxins in our daily environments and increasing rates of autoimmune disease. The "barrel effect" is used to illustrate what happens in the body to set up a disease onset. Imagine a barrel filling with water: genetic predisposition fills it to a certain degree, estrogen fluctuations fill it even more, and toxins (referred to as autogens) fill it even further, to the point where the water is just holding at the very top. Then, an otherwise inconsequential trigger (often a common virus that confuses the immune system) provides the final drop that causes the barrel to dramatically overflow. There is also discussion of current lines of research, as well some tips to minimize the introduction of autogens into the body. The statistics presented were interesting: more people will battle an autoimmune disease than cancer and heart disease, yet autoimmune disease research receives a tiny fraction of available resources. Rates of autoimmune disease have spiked in recent years, and not due to better diagnostics. According to Nakazawa, we are poisoning ourselves with our modern environment, but we have yet to make the connection and work towards remedy.

The book is interesting. Some of the discussion regarding disease clusters and molecular dynamics was tedious, but the general explanation of mechanisms involved in autoimmune disease were well-presented. It seems as though we are still a long way off from making any inroads regarding predictors, preventions, or remedies. My onset of polymyositis has reinforced the worry that those of us who already experience one or more autoimmune issues are more likely to experience additional diseases. While living in fear is not the answer, I am acutely aware of my status as a ticking time-bomb. Visit aarda.org for help understanding autoimmune disease, as well as how current issues like health-care and research legislation affect us. There are also tips on how to contact your legislative representatives for advocacy.

Latest Checkup

I mentioned yelling at God on the trail a few weeks back and being frustrated at hearing silence in return. Well, He yelled back in a big way this week. The rheumatologist looked me and stated verabtim, "Your liver tests are almost normal. Your CK readings are normal. This is a miracle. There is a higher power at work here." I am corrected and humbled. I am so blessed and fortunate to be doing so well.

I am running a few miles at a time, I'd like to get some power back into the equation and start running some "strong" miles. I am still lifting weights, and am at about 60%-80% of what I was lifting prior to disease. I still have more noticable deficiencies in certain muscle groups, especially those closer to the core of my body. It remains difficult and awkward for me to get up off of the floor. I still have quite a bit of stiffness and some arthritis in certain joints. However, I am certainly bouncier and more perky. Prednisone continues to bother me and make me unlike myself at times, both physically and emotionally. But good reports mean that I can continue to taper. I started 30 mgs daily and will drop to 20 in a few weeks. I continue to feel an increased sense of normalcy in everyday life.

I still wonder and worry about what kind of cycle this "up" phase is part of. It's easy to get cocky and start taking this feeling for granted. I also acknowledge that I am still on heavy Prednisone, and am cycling through emotional highs and lows. My last checkup was a major high, and I will get frustrated and sad again when it wears off, focusing more on the deficiencies again rather than the gains. What an experience, all of it.

Midnight 50K

I visited one of my favorite runs this weekend... the Midnight 50K near Lake Sylvia, AR. I rode along to the event to:
a) Get out in the woods for a night and enjoy some time under the stars
b) See how far/long I could stay on my feet and what it felt like
c) To see people that I enjoy seeing at these events
d) To see what the sting would feel like

You know, the sting. The pinch. The twinge that you feel in your gut when you are so wistful and longing about a situation that you can't have that it hurts. Like unrequited love.

I run/walked a portion of the course and it felt nice. One of the cool things about running long, especially at night, is the communion that you can sometimes experience with yourself, nature, God, philosophy, your digestive tract, and all kinds of other interesting entities. I got out onto the road with the goal of walking the half-course. The miles started ticking by, and I waited for the conversation with God. I waited for the 'who are you and what are you made of' self-reckonings that inevitably come during the course of a long, solitary night run. But they never came. I even tried to force them, turning off my headlight a couple of times and trying to initiate a vocal conversation when I was alone. But I drew blanks. I didn't feel anything, in fact. I didn't hit the flow. I just shuffled along, and when I came back into the finish area, it was over. I wanted to be back on the course. I must have been looking for something out there, myself perhaps, a spark of some kind. While I had a nice time, the whole thing was a bit hollow. I miss it so much.

I did see good friends, and I am grateful for their support. I realize that I sound a bit "poor me" at times... poor Katie can't win every race, so she's going to pout when things don't go her way. But it's not about that at all. The difficulty lies in the suddenness of a change in a negative direction. Like a breakup... at first, there is a sharp, acute pain. Then there is a little bit of mourning, a wistfulness that you feel the need to wallow in. Just immerse yourself... you want to be sad? Then be sad. Put the old songs on repeat, visit your old places, get your tears out. Visit your favorite races and wish you were in them. Then move on. Find a new role, adjust, make your peace. It's not normal to go through this process without a few tears and alot of brooding... the reason that it's hard to separate from something that you love is because you had such a special relationship in the first place, whatever "it" is for you.

Brothers Under the Bridge

I had a life once. I was right in the middle of it. I was the go-to girl. I was alive in a way that feels like the complete opposite of the person that lives in my body now. I was fast, and tough. And I could go far. Show me the hill and I'd show you my dust. I was fun. Big smile. Playful and joyous. A badass in a running skirt. Knew all the answers. Pretty and confident.

Now I sit and wait. I'm still. I'm weak. I've been replaced by people who have life and strength in them like I once recognized in me. Life moves on, but it's too fast for me now. I smile from the sidelines, but it's fake. I'm so jealous. Jealous of the ones who are in the middle now, and make it look so good. I wait and watch, and want their lives. Will they remember me after they all move on with their strong muscles and fast legs and shiny bikes? Their smiles look real because they're doing what they love and what makes them alive. Their eyes twinkle at each other, but mine feel dull.

I heard a song last month that hit home. It's not about illness, but about neglected veterans. The fall can happen so fast. The song is the title of this post and belongs to Bruce Springsteen. The line is: "One minute you're right there... then something slips."

Gone...

My cardio is gone. An easy 5-miler has become an ugly, painful marathon effort. (Preface: This is where I reconcile the difference between gratitude to be up and on my feet with unwillingness to accept what I've gotten back so far as definitive.)

My cardio is gone. I might as well be trying to run with 4 cigarettes hanging out of my mouth. I have never worked so hard to negotiate a simple tree root. All of the footwork, gone. A small rolling hill is a 5-story brick wall. All of the power, gone. No endurance. This is the work part. It's not like I was all that good before. But good enough to feel wistful about where I was and how I want so badly to get it back. I want to explain to other runners that I meet that this isn't me, that I'm usually not this slow or winded. Why the need to qualify myself? Lance Armstrong had to have felt this way some days when he went out on his bike after cancer. Fundamentally happy to be on the bike, but the immediate experience is painful, frustrating, and leaves everybody pissed off.

That's right, get mad.