July 2012

Summertime is with us, and it's hot and miserable, much like last year.  The difference is, however, that I am running this summer.  Sweet.  I have a healthy body to date, but am still trying to wean down from the 10 mgs of Prednisone that seems to be what my body wants in order to stay active and pain-free.  I can do ok around 8 mgs, but am much more vulnerable to aches and breakdowns.  Not much has changed in the last several months.  I have had a few small rollers in my CPK profile, but nothing that hasn't been quickly controlled with 10 mgs of Prednisone. 

One of my large projects that I have been wondering about has involved whether or not a specialty clinic such as Mayo or Johns Hopkins would be a good idea.  Both of those places have a much better concentration of Polymyositis specialists, knowledge, and patients than the average rheumatology clinic in small-city Arkansas.  Before committing to it, however, I sought a local second opinion.  The opinion was that I am basically getting a "bargain" in my treatment right now.  Still responsive and highly functioning on relatively cheap and easy medication.  I would probably not get any increased benefit from a visit to Mayo... which would be more appropriate if I had a tougher case to crack.  I might travel a long way for them to say, "keep doing what you're doing."  This consult also seemed a little more progressive and unafraid of new drugs that are coming to the forefront.  He seemed a little bit more eager to embrace Rituxan as a beneficial drug, once FDA and insurance companies became more routinely accepting of it.  I came away from this a little less afraid of other treatment options.  Not that I have been afraid of the treatments themselves... it's more like I've been afraid of a lack of treatments.  I am a little more confident now that there could be life beyond Methotrexate. 

Refueling at the Ouachita Trail 50K in April



So yes, I'm still on too much Prednisone.  10 mgs is not bad, but still too much for everyday use.  I feel that I move at a snail's pace trying to get off of this stuff, and I flare up so easily once I get to a certain dosage.  (which, of course, the doctor explains away with my running habits.  which, by the way, aren't that extreme.  and also which I refuse to believe.  Other people that I run with don't have CPK problems, do they?  So there.)

Patent idea

Home CPK monitoring kit: No more waiting 3 weeks to know if you indeed have a flare coming! No more mind games with phantom pains and soreness! No more doomsday worries that your meds have stopped working! Simply prick and stop obsessing over your latest round of bloodwork. Now, that's peace of mind.

Yep, I'd buy one.

March 2012

What a great spring to be running. I have fallen into the cycle of doing a long/difficult event, and then watching my mental and physical motivation tank for a few weeks until it's time for the next event. I'm not necessarily complaining... I love having events to look forward to. I recently made a last-minute decision to join the pace team for the Little Rock Marathon. With about 2 week's notice, I had a pacer singlet on my back and a 3:45 sign in my hand. It was a blast.

I did get some scary news this week. My CPK's came back elevated, a full 2 weeks after the Little Rock marathon, after plenty of rest and good self-care. I'm not sure why, I can't think of a good reason that I should be elevated. It's only slight, and all I've done is bump back up to 10 mgs of prednisone, so we'll see if that does anything to calm me down. I thought I felt a little sore and inflamed this week, and it turns out that there was something there.

I'm going to try and keep going forward with the other events that I was planning for this spring, which really only involves a longer race towards the end of April. No reason to think too hard about it just yet. I'll keep you posted...

K

White Rock

Well, this entry is going to be somewhat of another race report. I am recovering after the White Rock 50K in NW Arkansas. This is a very casual bring-your-own-cooler-and-lawn-chair type of event that collects a coffee-can donation to cover costs. I love pulling up to an event and seeing the familiar brotherhood of folks who enjoy this same type of thing. I did the pre-run hugs and chatter, threw on my arm sleeves and a jacket (underestimated the temp), and took off without too much apprehension. The run is on dirt roads, so without the potential for errant roots or accidental bonus miles, there were few worries other than the usual hydration/leg cramp/upset stomach wild cards.

I hadn't run all that enthusiastically since Athens-Big Fork a month ago. I was feeling heavy and unmotivated, in part spurred by a lack of commitment to recovery, and also by a strong potential for a new job and relocation that had been looming. I had no thoughts or plans, just "go". I mixed up the run with conversation when I was near others, but I didn't stick around too long when I felt like picking it up a little. I almost never listen to music during an event, but I did this time because solitude on a dirt road is one evil twin away from insanity when the miles start to pile up. I joined up with Stuart from KC, MO for several miles and into the turnaround at the top of White Rock Mountain. It was nice to have somebody to debate about when or where the course might turn vertical to ascend the peak. And while there were hills, the course was relatively flat compared to past years (different road due to closures on the old course).

Good to see friendly faces and receive alot of encouragement (as well as teasing, and I would expect nothing less from my friends) at the top/turnaround. I caught grief for my schoolgirl-esque skirt/calf sleeve combo, capped off by Nike armwarmers. Dork city, population me. One thing that I love about ultra/trail running is that feels more pure than the over-gear, overcalculation, and overanalysis that can happen on the roads. Be a man. Just run. And yet I am still in the experimental phase of deciding whether I like calf sleeves or not, so I deserved the laughs that I got. I also enjoyed seeing the mountain bikers that were sharing our course that day, it provided some extra camaraderie and contributed to the general fun-through-insane-activity atmosphere.

A brief photo op at the lookout, and then back down. I caught Stuart again, and asked for the discipline to refrain from chasing down the front-running woman just yet. That didn't last long. I knew she was up there, because people were telling me as I passed them on the out-and-back. (I love out-and-back courses because it's fun to see everybody face to face as you pass, and you can get some good race updates.) I think my discipline lasted until what I estimated was around 15 miles to go. I was feeling fresh, so I let myself run the uphills and push a bit. That feeling lasted until about the 10-to-go mark, when I started getting tired. Tired, but not hurting beyond general muscle fatigue. Everything above the waist felt perfect, so I just pushed on tired legs and hoped for no cramps. I had passed who I knew was the leading woman, and was continuing to run like I expected her to be just around the corner from me. Around 4 to go, I started getting tired of running. I wanted a hill so that I could walk, but those last miles were flat. Run you must.

I finished in 5:14, which was an excellent run for me. The course was actually close to 34 miles (again, relatively flatter than the old course). I ran a negative split, which is a telltale sign that I was feeling good and had a great race (or that I climbed a massive hill to the turnaround). Deanna stopped and took some great action shots of me towards the end. I wished that I had brought warmer clothes, as I was very, very uncomfortable afterwards once I started to cool down and was trying in vain to hang out comfortably at the finish.  I sometimes feel guilty for scooting out early, especially if I am fortunate to be one of the earlier finishers. 

It's so much fun to have a good day. I wish I could bottle that feeling for the hard times when I can't do this kind of stuff. I enjoy all of the folks that come for these events, it's such a warm and positive group. Hugs all around, a few beers and laughs at the finish line, and a short drive home. Great day.





Another recap: http://www.arkansasoutside.com/2012-white-rock-classic-running-addition/

Athens-Big Fork

Arkansas, that is. There is a trail run here that runs on an old postal trail between two tiny towns in western Arkansas. It's approximate marathon distance, give or take (I've never Garmin'ed it, and don't really want to know.) The catch? It goes up and over 8 Ouachita mountain peaks, then turns around and goes back. To say that it's tough is an understatement. I always wonder how that ever could have been a viable postal route. Or who was around to receive any mail in that area, for that matter.



So this run is typically the first Saturday in January, and always feels like one of those occasions that indicates that a year has turned, by which we can mark our calendars. Did I say that this run is tough? Every time, I give myself a little internal pinch and chuckle at the absurdity of what I am about to put myself through. Try not to think about it. And then we start...


(Big Fork Community Center... RD Steve told us this year that our donations helped to enable running water.)


And off we went. Lots of climbing, lots of picking my way around rocks and trying to stay in control on descents, and trying to assess the general state of things during the few flat stretches. Lately, I have been having alot of leg cramps, even on shorter runs. I am not sure if it's a phase, something I'm doing (eat, drink, stretch), or if it's related to the bizarre state of my muscles. Yesterday was warm, and I was very nervous about a lock-up. I had a few scares, any little slip during a creek crossing or a toe-catch would cause a calf to sieze, but by some miracle, it always released quickly and let me keep running.

Long runs are funny beasts. The first few hours of any run feel pretty much the same. The story of what kind of a day I'm going to have doesn't start to weave itself together until it's way too late to do anything about it. Which is one of the reasons why this stuff is so interesting. The consequences of a bad day at ABF are pretty heinous, as you are out in the middle of nowhere with no place to go but up and over those damn mountain peaks on your own two feet, regardless of how bad you feel or incapacitated you have become. There are plenty of meltdowns.


And yesterday's run churned on. A foggy day meant that several of the peaks were in the clouds, so damp that you could practically drink the air. It was beautiful in a surreal, running-in-a-cloud kind of way. I drank amply, paid attention to electrolytes, and grazed at aid stations (Pringles and oatmeal pies were the magic formula, who knew?). And the story of my run started to unfold. I had a good one. A very good one. I don't say this often, but I would live yesterday over again. The run is tough, but not a complete killer until you get to the turnaround and realize that you have made a huge mistake by not turning around 3 peaks ago at Blaylock Creek. The hills are worse on the way back in, too. Especially peaks 14 and 15, where people really start to crash, and where in past years I have experienced the sensation of falling backwards when my climbing momentum slowed. If you can simply survive the 2nd half, you are doing well. And somehow I found myself gaining energy and going faster and faster the further I went. It was happening. Don't ask, just go with it and hope it holds together. I started passing people going up the last few hills. They looked miserable, and I felt bad for them as I scooted up and around with sickening energy and positivity. Stay with me, legs! I came off of the trailhead and hit the last 2-3 mile road section as high as a kite. I didn't think there was a way that I could match last year's time (I had a good run last year, too), and yet I PR'd by about 15 minutes. I've had one or two road marathons where I felt better at the end than I did at the beginning, and maybe as many long-distance trail events. It's an amazing feeling.  Too bad it lasts only as long as your next run. 


(This feels darn near close to vertical. How do those guys out west do it?)

So that was my Saturday. May there be many more. Cheers,

December 19

Another couple of months, and this time, I am feeling a bit better. Physically, I have been doing decently since I switched drugs back in the summer and got that flare under control. Mentally and emotionally, I was at my wit's end with the heavy Prednisone crutch that I was leaning on during the changeover. I am still taking double-digit mg's per day, but have come down significantly since the 20 I was on for several months there. I feel a bit more normal, emotionally. Ahhh.

It is time, however, for a second opinion. Past time, probably. I have been putting it off for 2 reasons: I have gotten a few faculty interview opportunities just recently. I wouldn't be moving to a different end of the country or anything (that ship sailed when I got sick), but if I were to relocate, it would certainly affect who my primary rheumatologist is and which specialty clinics are regionally available. Also, since I am showing normal bloodwork and fairly asymptomatic so far on Arava, I wouldn't get as much value out of a clinic visit at this time. Which is a catch-22 if you think about it. It would be fairly risky to wait until I got sick to get in the queue for Johns Hopkins or somewhere. But if I went now, I'd go a long way for them to tell me that my workup is normal. The prudent thing to do, of course, is to go ahead and commit to a clinic and get into their network. Which I'll do just as soon as the last of my recent interview opportunities shakes itself out.

Merry Christmas! Looking forward to some family time and spiritual fortification, as well as some preparation for the coming semester. Catch you on the flip side...

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