Monday, September 29, 2008


The good: This weekend APL (the boyfriend) and I took a totally spontaneous camping trip to Rocky Mountain National Park to see if the aspens had changed color yet. And we were not disappointed! The aspens were all honey golden and absolutely glowed in the sunlight. From afar, the aspen groves made the pine covered hillsides look like they were aflame. On Sunday morning, since I’m not currently able to hike, we drove up a single-track dirt road to the Alpine Visitor Center at 11,796 feet. The view was spectacular. And while we breathed the crisp, clean mountain air and stood in the wind-whipped sunshine, we watched a rainstorm drenching Denver far below us.

We were also lucky enough to see several herds of elk. And because the elk are in their mating season, we also got to hear them “bugle.” If you’ve never heard an elk bugle it’s a really difficult thing to describe. The male bugle is sort of like a cross between a high-pitched scream and a squeaky swing set. And the female’s response sounds like some sort of jungle bird. And they just open their mouths and scream out these weird sounds as loud as they can. Made me wish I could do the same thing – I bet it feels great! All in all, we really enjoyed ourselves.

The bad: Unfortunately, about twenty minutes into the ride home on Sunday afternoon, I realized that my body had run out of gas several hours before. I had been running on fumes, and there were no more fumes. I had totally gone past my tolerance for activity without even realizing it. Exhaustion hit me like a ton of bricks. And without glowing trees or gorgeous scenery to distract me the swelling, cramping, curling, aching, and throbbing in my joints magnified. It didn’t help that in our serious spontaneity I had forgotten to pack my prednisone, a medication that I am taking to help with the pain while we search for a treatment that works. I missed two doses this weekend, a mistake I obviously can’t afford to repeat in the future.

By the time we got home I felt physically destroyed and I dropped like a stone into bed. And, though I am honestly trying my best not to think about before, it turns out to be easier said than done. I lay there in bed, joints throbbing, head throbbing, fatigue smothering me, and I felt like “destroyed” might also be a good word to describe the changes in my abilities. I used to play several water polo games on the same day. I’ve been surf kayaking in Belize. I’ve hiked the half dome in Yosemite National Park. I survived being a 1L, or first year law student, and even managed to do well at it. But this weekend, two afternoons of driving around looking at pretty trees was too much for me to handle. It was a low feeling. A really low feeling.

The ok: This will probably sound a little hokey and hippie-tastic, but I joined this “Mindfulness Based Stress Reduction” group, and something our instructor said in class came to mind while I was lying there. She told us about seven “attitudinal foundations” that we should keep in mind to help us benefit from the group. One of them struck me the same way “try not to think about before” did; as really good advice that would probably be difficult to implement. The attitude was “non-judging.” The instructor encouraged us to become aware of the way we constantly judge ourselves and to try to step back from it.

I realized that I was judging myself for the physical limitations of my body, over which I have absolutely no control. So I tried to step back from it. Honestly, I can’t say that I was entirely successful. I still felt pretty frustrated and upset by how horrible I was feeling and how little it took to make me feel that way. But I did manage to calm myself down enough to remembered that I am supposed to be taking this one day at a time. And I do want to try to not judge myself for the changes that are happening to me. Though, I expect that it will also be easier said than done.

Friday, September 26, 2008

Still on the Staff

I went to a staff meeting today for the first time since my diagnosis, and I’m really glad that I did. I can’t say that I felt like my old self again, because that isn’t true and because I’m really trying not to think about before. But something about the meeting made me feel quite content. I joked and laughed and brainstormed with my co-workers. I provided insight on their projects and updates on mine. I may have considerably fewer responsibilities than I used to, but I realized today that I am still an important part of the research staff. I still have valuable talents to offer. I am still needed. And for the first time in what feels like forever, I felt like I recognized myself. I’m still in there, somewhere. I just have to figure out exactly where. But even that small realization was enough to make me feel like I found something today.

Try Not To Think About Before

If someone told you to try not to think about your life before this moment, would you know yourself?

It would mean you couldn’t base your identity on places you have lived or schools you have attended. You couldn’t figure out who you are based on things you have enjoyed doing. Past jobs, whether you loved or hated them, would have no weight. Talents you developed would have no meaning. Your relationships with people couldn’t shape you. Even goals you had set for yourself, ambitions you might have had, would be outside the scope of consideration. Would you know yourself? Without looking back, would you know how to go forward?

Try not to think about before.

I think those words are probably the most daunting advice I have ever been given. Not to mention potentially the most terrifying. And yet, at this point in my life, those words may also be the best advice.

I was recently diagnosed with rheumatoid arthritis (RA). RA is a chronic and systemic autoimmune disease. Basically, it means that my immune system has decided my own joints are the enemy and has started to attack them. Joints all over my body are inflamed and painful – from my fingers to my knees to my toes. RA is a chronic disease because it continues indefinitely and the symptoms may never go away. It’s a systemic disease because it can affect multiple parts and organs of my body. It’s also a progressive disease, meaning it keeps getting worse and can potentially cause total joint destruction and functional disability.

Apparently, RA is relatively common. Depending on the source anywhere from 1.3 million to 2.1 million people in the United States have RA. While it can affect anyone, including children, apparently the disease has a preference for women, as 70% of people with RA are women. Onset ordinarily occurs between 30 and 50 years of age, so at 25 I guess my body just thought it would get a head start. And RA is more than just a little joint pain. It can result in stiffness, muscle pain, joint destruction, and a substantial loss of functioning and mobility. People with RA often suffer from fatigue, weakness, loss of appetite, and depression.

To fully understand the impact that RA has had on my life, things that happened before this moment are relevant. I have always had an extremely active and busy life. In high school I made the varsity water polo team as a freshman and was the league MVP by senior year. I attended an Ivy League University, studied abroad in Japan and Australia, and graduated with honors. I’ve traveled to all fifty of the United States. And for the past two years I’ve been enrolled in a dual degree graduate program, pursuing a law degree and a masters in environmental policy. I’ve earned straight A’s in the graduate school and I’m in the top third of my law class. I’ve never had a C on a transcript in my life.

Last semester alone I did about three hundred things at the same time. I took 15 credits, which consisted of three law classes and two graduate classes. As a member of the law journal, I cite-checked and proofread several articles. I researched and wrote a 46-page award-winning student note that will be published in an upcoming edition of the journal. I also worked part time for an environmental research center, where I put out three editions of our bi-monthly e-newsletter: generating content, proofing articles, setting up the layout, and doing web design. I also worked as the events coordinator for the research center and organized three events last semester, each attended by more than 300 people. One of the events was a debate between Colorado’s congressional candidates. Then, just for fun, I became the only graduate student on the University’s women’s club water polo team.

This semester is a totally different story. It takes a great deal of effort just to get out of bed in the morning, and some days I feel like I’d rather not bother. I spent the first month of the semester totally avoiding people because I couldn’t handle answering the inevitable “how was your summer?” question. I’m only taking 10 credits but I already feel like I’m drowning. I’m so exhausted and the pain is so distracting that I’m having trouble keeping up with the reading or even paying attention through an entire class period. On Wednesdays I have 3.5 hours of class in a row and I have to go home and take a nap afterward. I quit the law journal. I gave up my job as events coordinator at the research center. I’m still working as the newsletter editor, but I’m only doing one issue this semester and I’m getting considerably more help with it.

The three blocks between my house and the bus stop often feel like too much for me to walk. My hands are already hurting from typing this post. My boyfriend and I have been wearing matching rings since 2005, but mine doesn’t fit on my swollen finger anymore so I have to wear it on a chain around my neck. One of my friends is helping out by hiking with my 1.5 year old puppy, because I can’t give the puppy the exercise she needs, but I can’t help feeling a twinge of regret every time the puppy seems happier to see my friend than me.

There is no known cure for RA. Treatments exist to slow the destruction of my joints and lessen my pain, but my rheumatologist says it may take months to identify the right one. And there isn’t an instruction manual for how on earth you are supposed to function in the meantime. So while I know my condition won’t always be as bad as it is this semester, I’ve also come to realize that RA is going to require me to substantially change the way I have been living my life.

However, that seems easier said than done. At least in part, the pieces of my life up to this moment have seemed to define me: the schools I attended, the grades I got, the things I was good at, the activities I enjoyed, and the goals and ambitions I had based on all of that. But no matter how hard I wish not to be true, a lot of those things just aren’t possible any more. At least, not in the way I thought they would be. I have to reevaluate all my choices. I have to find a new way. But if I keep thinking about all the things I feel like I have lost, I may literally drive myself crazy.

So, I’m going to try to take my life one day at a time. I’m going to try to figure out, step by step, what I really want and what is actually possible. I know that RA isn’t the end of the world. It isn’t life threatening and it could be a lot worse. But it could also be a lot better. And I have to figure out how to make it better. Even if my hands end up hurting from typing this blog, I think it might help me figure out how I’m supposed to get through all this.

I’m going to try not to think about before. From this point. Forward.