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!).

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.