October 26

I'm supposed to be working on a presentation. Instead I'm surfing weather.com 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.

Cheers,
K

Milestone

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...

August/September

Leaving summer soon and entering fall, I feel as if have been living somewhat of a mini-roller coaster (mostly internal) within my fairly normal routine. I am fighting to control a small flare-up that occurred over the summer, and results have been mixed. I have had to do bloodwork every 2 weeks or so, and the CPK enzymes are not out of control, but not necessarily under control, either. I have had to up both the Prednisone and the MTX. As mentioned before, I like Prednisone for a few reasons, mostly that it enables me to heal quickly and do all of the crazy athletic endeavors that I seem to be addicted to. This time, however, I feel a little more cognitive and mental turmoil. I have not felt in complete control of my mood and general demeanor/personality lately, and it is really bothering me. I am afraid that I haven't been as nice as I should be. Or have I? I think about my own behavior quite a bit, and question what is me and what is Prednisone. Just last week, I fired off a complaint from my email that I regret. I shouldn't have sent it, it stemmed from a misunderstanding that I should have just let go. I'm not even sure if I was correct or not. I have felt a bit isolated lately too... perhaps the cumulative effects of sitting on the sideline over the last several months. Although my mind plays with me... could it be because I'm not very pleasant to be around? Prednisone makes me think too much. Angry, lonely, and on steriods... not a good combo. In my head, I want to slow things down, I want to hit the volume down button. I want to stop talking, because I don't like what's coming out. Who am I? Why am I like this? You all must feel the same way sometimes, right? How do we make it ok? How much of it is real, and how much is just in my head?

On the upside, the Prednisone has cleared my IT band injury right up. I'm not 100% yet, but a heck of alot closer than I have been for a long time, and getting better every day. Being able to run again is a bright spot, and I am excited for the fall season. I can't imagine what my mood might be like if I still weren't able to run.

Bloodwork this week. Again. I have been quite the pincushion lately.

Flare?

CPK still climbing on 10 mgs of Prednisone. I was shocked that my last round of bloodwork showed increased inflammation even after a few weeks of steriods. I have been trying 20 for a week now, and I still feel like the inflammation is ramping up. Especially in the last couple of days, I am more sore and more tingly (my back, it's a wierd sensation) than I have been since I learned that my CPK had jumped. If I did bloodwork today, I am pretty sure that it would be higher still. What the ?! This wasn't part of the plan.

???

July 2011

Like many of us this summer, one word sums it up. I won't even say it, because it's just that redundant and obvious.

I have been feeling a little better on 10 mgs of Prednisone for the past few weeks. I am not running yet, but I hope that I am getting close. I still feel somewhat symptomatic, a few of the hallmark symptoms that seem to show themselves whenever I get inflammed are still hanging around. Mainly, I have a constant tingling sensation in my back. Pretty much all of my major back muscles are involved, especially in the upper back, through the shoulders. I still have a hint of a face rash, and my quads feel very stiff and heavy.

I am able to ride my road bike, which is pretty much as good as anyone can do in the current heat. My joints are still a bit achy and I still have some injury issues that don't seem to be healing on their own, but as I mentioned, they seem to be getting better, albeit on their own timeframe, not mine. Not there yet, but hopeful. I missed the Midnight 50K, which was a bummer. I have a few things up my sleeve for the next year, though. I've already signed up for Memphis, so that's no secret. The rest of my intended runs are in the spring, so I've got a bit of time to pull it together, as long as this body cooperates. I am spending a few hours a day on rehab, primarily massage, stretching, and strengthening. I am also trying the Galloway approach to building back mileage, which involves intervals of running and walking, rather than just straight-up running. I can only continuously run about 20-30 minutes until the pain kicks in, but with a few minutes running/few minutes walking interval routine, I can make it close to an hour. Better than nothing, but a long way to go.

On the up

CPK, that is. I clocked in somewhere around 350 this time, and I had been feeling it for a few months. The inflammation had been ramping up a bit, and I was starting to run a little hot. I had developed a rash on my face and hands, achy muscles and joints that were making it very difficult to be active on a day-to-day basis, and a swollen lymph node. I had lost a few steps, dialed exercise way down, and was feeling generally uncomfortable.

So for now, sweet relief. I love Prednisone. I hate it that I love it. But I feel so much better. Am in a better mood, have energy, am excited about tomorrow and the next day and the next month. Aches and pains go away like they should. Body parts don't hurt for no reason. My skin looks vibrant ahd healthy. It's hard to feel worried about being sick when I'm manic on steriods. I catch myself enjoying the feeling, but it's deceiving. The hell to pay is that Prednisone speeds up the aging process. A pleasant thought.

I am also wide awake (again). There was popcorn popping just underneath my eyelids when I tried to go to bed just now. I tried reading, but that activity seemed a little too calm for my racing mind and eyeballs. I don't think the computer will help, but at least it's more interesting than my bedroom ceiling.

Goodnight to most of you. I'll be up for a little while...

Waiting

Good news/bad news: I am very nearly off of prednisone. The "good" portion of that is self-explanatory. The "bad" part is that I am broken down, a few steps slower, not healing, and in general, in the dumps a bit. I have had problems with my IT band (a common but persistent running injury) since the beginning of the year, and now the other one has decided to flare up as well. After a few disasterous long-distance trail attempts in the last several weeks, I have decided that I cannot continue to move forward without taking a few steps back to try and get this stuff healed. It's a good thing that it's summer time and a little bit of a slower pace, because there don't seem to be enough hours in the day to ice, massage, stretch, strengthen, and repeat. It's like an obsessive-compulsive routine on a daily repeating loop. And it still just seems to get worse. I ran 6 miles last week. Total. Ouch. I have been riding my road bike in hopes of maintaining fitness, and as a last holdout of physical activity, but I am about to hang that up as well so that I can say that I am truly doing everything that I can to try and heal this IT misery. I've had my heart set on the Midnight 50K in late July, but it seems to be slipping away quickly with every day that goes by with the same knee-to-hip pain. I can definitely see the addictive mechanisms of steriods... what we hear about in sports is a different type of steriod, but the same psychological addictions must be at work. When you're on them, energy is high, body recovers quickly, and mood is good. It's tough to come down from that, you know? Plus, my poison ivy doesn't heal as quickly... ;-)

(patience is a virtue... too bad I stink at it!)