May 1, 2009

Waiting on results from my latest Dr. visit, which was 2 days ago. I feel like I have no basis for judgement regarding how I'm doing, no template for recovery, no statistics to measure up against. I came away from the appointment (as usual), with a cloudy perception of how things are going. My take was mixed... functionally, I seem to be doing as well or better than the Dr. could have hoped for. The actual disease, however, didn't seem to be moving out of my body as quickly as he would have liked. The part that scared me was that he mentioned that I am pushing the dosage limits on the drugs that we are using for now, and that treatment options are fairly limited. It is still early, and he advised me that I will have to be patient, but it is easy to let my mind run wild as I contemplate the idea of hitting a recovery plateau.
Functionally, I feel as though I am making progress, but at a snail's pace. I also feel that it's not exactly linear, either. I will have a good day, and then the next will feel worse. I will feel springy and functional in the morning, and then stiff and weak by evening. Progress is definitely not measureable from day-to-day. What I can do now though, includes:

• Lifting my arms over my head
• Changing into/out of most shirts (within reason, like cotton t-shirts)
• Walking a few miles at a time, including hills
• Lifting very light weights, strength exercises with the band
• Using cardio machines like the elliptical trainer and stairclimber at low resistance
• Showering unassisted, including washing my own feet

Exercise remains one of the things that I feel I can do best, and it feels wonderful to do it. I am very happy that exercise is recommended, and feel like it is something I can do to help myself. I am fortunate to work in a recreation center where I can utilize some excellent equipment, and feel like I am my own best physical therapist at this point. I am not driving yet, I still lack the strength to turn the steering wheel with authority at 40mph, and don't quite have the reaction time that I need in traffic or at higher speeds. I might be able to drive around town at off hours, but wouldn't touch rush hour or the interstate.

My eyes continue to bother me, there is alot of pressure in them and I get the sensation that they are bulging out of my head. Another recent discomfort that I suspect the Prednisone is responsible for is some increased joint pain, specifically in my knees. I hope this is the result of the steriods and not the disease. This is one of the symptoms that contributes to my perception of a backslide in my progress... a two-steps forward and one-step back kind of feeling.

We will see. The doc told me that he sees me as a motivated person who wants what they want and wants it yesterday. Whether that's accurate or not, part of the reason that I want to know how I'm doing and why I'm not doing better is that as previously mentioned, I have no guidance or blueprint regarding the normalcy of recovery. I would love to compare myself to norms, but there don't really seem to be any. Nothing like sailing without a compass to make you crazy. I've compared it before to running an super-long race with no concept of where you are on the course, no mile marks, aid stations, sense of direction or time, other runners to talk to, etc.

And still waiting on the latest bloodwork. More soon.