Wednesday, October 26, 2011

October 26

I'm supposed to be working on a presentation. Instead I'm surfing and watching Rick Steve's Europe on PBS because tonight's World Series game got rained out. I ran tonight, it was one of those "there's no way", because: a) I'm so tired due to a monster week at work, b) it's the kind of mid-fall gray and damp day that makes you want to do something snuggly and indoors, and c) ... is it really that hard to think of more than 2 reasons to talk yourself out of a run? But I got out the door before I let my body-at-rest inertia kick in, and it was the right decision. It almost always is.

I had a funny thought. I can be a little bit geeked-out when it comes to what events I do, feeling the need to "compete" a bit too much, worrying about who else shows up, whether I can beat them, and why or why not. Sometimes I wish I didn't get so much validation out of it. I ran a local 10K a few weeks ago and had a fantastic race. I think it was a PR. And that's the hitch... I think it's a PR. I'm not sure. I don't write this stuff down in any kind of systematic way. And I wondered if I would regret not documenting my adventures better, in case they become part of a lifestyle that I can't have anymore someday. And then I think, nah, I'm kind of glad. I have a few pictures, and of course I know my PR in a few key distances. But for some reason, the 10K didn't ring a bell. And that's ok. Let's call it my attempt at balance.

Time to try another Prednisone taper. I seem stable so far on Arava, I'm curious to see how long it lasts. I'm just excited to get a steriod break.


Wednesday, October 5, 2011


As in, a birthday.

In general, this birthday is not the happiest. Prednisone is wreaking havoc on my mental state. I am feeling very shaky emotionally, and it has been unpleasant. I have been suprised to feel on the verge of tears quite often in the recent months. Sometimes it's flashes of anger about one issue or another, and other times it will be extended periods of worry or pangs of loneliness. As much as I hate being medicated, I realize that there are resources that can help me, and that it's very common and not at all stigmatized for someone in my situation to ask for extra help staying emotionally balanced. Maybe it's time. I mused about this in my last post. I feel dark inside, and I'm afraid that it is being reflected in my external personality as well.

I was lamenting that I wasn't happy about this birthday, and a friend suggested setting some goals. I agree. I have had some big accomplishments in the last few years, and while working through the challenge of each one gave me happiness, I wouldn't say that I am overall more happy because of them. In fact, there are some things that I am quite unhappy about at the present time. I have some soul-searching and self-organizing to do. In the midst of difficulty lies opportunity. When the going gets tough... well, you know. It's a new year.

As for the health specifics, I have been on on too much Prednisone for my own good. The Methotrexate seems to have lost some effectievness. The heavy prednisone is to keep the dam from breaking, so to speak. I switched to Leflunomide (Arava) last week and am scared. I feel like Columbus sailing off the edge of the earth. Just stop taking Methotrexate, just like that? What will happen? When will the demons come back? Where did that leg pain come from? Why am I even training for a marathon? What's the point? Should I register for that February race, or just give it up now and save myself the trouble?

I am also looking at a couple of different myositis-specializing clinics around the country. I've thought about this at various times since I first got sick, but since things had been going so well for so long, it hadn't really been at the forefront of my priorities. But it's time to get some advanced second opinions, and get into somebody's system that can help me better than the local one-man rheumatology clinic (which I have no complaints with, but I respect that they have limited experience with a very rare and complicated disease). All I know is that when your meds stop working, all hell seems to break loose. I don't know where it's worse... in my mind or in my body.

But the good news: Although it's steroid-induced, I'm up and moving. Today I ran, and tomorrow, God-willing, I'll run some more. It's really the only way I know how to keep moving forward...