I mentioned yelling at God on the trail a few weeks back and being frustrated at hearing silence in return. Well, He yelled back in a big way this week. The rheumatologist looked me and stated verabtim, "Your liver tests are almost normal. Your CK readings are normal. This is a miracle. There is a higher power at work here." I am corrected and humbled. I am so blessed and fortunate to be doing so well.
I am running a few miles at a time, I'd like to get some power back into the equation and start running some "strong" miles. I am still lifting weights, and am at about 60%-80% of what I was lifting prior to disease. I still have more noticable deficiencies in certain muscle groups, especially those closer to the core of my body. It remains difficult and awkward for me to get up off of the floor. I still have quite a bit of stiffness and some arthritis in certain joints. However, I am certainly bouncier and more perky. Prednisone continues to bother me and make me unlike myself at times, both physically and emotionally. But good reports mean that I can continue to taper. I started 30 mgs daily and will drop to 20 in a few weeks. I continue to feel an increased sense of normalcy in everyday life.
I still wonder and worry about what kind of cycle this "up" phase is part of. It's easy to get cocky and start taking this feeling for granted. I also acknowledge that I am still on heavy Prednisone, and am cycling through emotional highs and lows. My last checkup was a major high, and I will get frustrated and sad again when it wears off, focusing more on the deficiencies again rather than the gains. What an experience, all of it.
Friday, July 24, 2009
Sunday, July 19, 2009
Midnight 50K
I visited one of my favorite runs this weekend... the Midnight 50K near Lake Sylvia, AR. I rode along to the event to:
a) Get out in the woods for a night and enjoy some time under the stars
b) See how far/long I could stay on my feet and what it felt like
c) To see people that I enjoy seeing at these events
d) To see what the sting would feel like
You know, the sting. The pinch. The twinge that you feel in your gut when you are so wistful and longing about a situation that you can't have that it hurts. Like unrequited love.
I run/walked a portion of the course and it felt nice. One of the cool things about running long, especially at night, is the communion that you can sometimes experience with yourself, nature, God, philosophy, your digestive tract, and all kinds of other interesting entities. I got out onto the road with the goal of walking the half-course. The miles started ticking by, and I waited for the conversation with God. I waited for the 'who are you and what are you made of' self-reckonings that inevitably come during the course of a long, solitary night run. But they never came. I even tried to force them, turning off my headlight a couple of times and trying to initiate a vocal conversation when I was alone. But I drew blanks. I didn't feel anything, in fact. I didn't hit the flow. I just shuffled along, and when I came back into the finish area, it was over. I wanted to be back on the course. I must have been looking for something out there, myself perhaps, a spark of some kind. While I had a nice time, the whole thing was a bit hollow. I miss it so much.
I did see good friends, and I am grateful for their support. I realize that I sound a bit "poor me" at times... poor Katie can't win every race, so she's going to pout when things don't go her way. But it's not about that at all. The difficulty lies in the suddenness of a change in a negative direction. Like a breakup... at first, there is a sharp, acute pain. Then there is a little bit of mourning, a wistfulness that you feel the need to wallow in. Just immerse yourself... you want to be sad? Then be sad. Put the old songs on repeat, visit your old places, get your tears out. Visit your favorite races and wish you were in them. Then move on. Find a new role, adjust, make your peace. It's not normal to go through this process without a few tears and alot of brooding... the reason that it's hard to separate from something that you love is because you had such a special relationship in the first place, whatever "it" is for you.
a) Get out in the woods for a night and enjoy some time under the stars
b) See how far/long I could stay on my feet and what it felt like
c) To see people that I enjoy seeing at these events
d) To see what the sting would feel like
You know, the sting. The pinch. The twinge that you feel in your gut when you are so wistful and longing about a situation that you can't have that it hurts. Like unrequited love.
I run/walked a portion of the course and it felt nice. One of the cool things about running long, especially at night, is the communion that you can sometimes experience with yourself, nature, God, philosophy, your digestive tract, and all kinds of other interesting entities. I got out onto the road with the goal of walking the half-course. The miles started ticking by, and I waited for the conversation with God. I waited for the 'who are you and what are you made of' self-reckonings that inevitably come during the course of a long, solitary night run. But they never came. I even tried to force them, turning off my headlight a couple of times and trying to initiate a vocal conversation when I was alone. But I drew blanks. I didn't feel anything, in fact. I didn't hit the flow. I just shuffled along, and when I came back into the finish area, it was over. I wanted to be back on the course. I must have been looking for something out there, myself perhaps, a spark of some kind. While I had a nice time, the whole thing was a bit hollow. I miss it so much.
I did see good friends, and I am grateful for their support. I realize that I sound a bit "poor me" at times... poor Katie can't win every race, so she's going to pout when things don't go her way. But it's not about that at all. The difficulty lies in the suddenness of a change in a negative direction. Like a breakup... at first, there is a sharp, acute pain. Then there is a little bit of mourning, a wistfulness that you feel the need to wallow in. Just immerse yourself... you want to be sad? Then be sad. Put the old songs on repeat, visit your old places, get your tears out. Visit your favorite races and wish you were in them. Then move on. Find a new role, adjust, make your peace. It's not normal to go through this process without a few tears and alot of brooding... the reason that it's hard to separate from something that you love is because you had such a special relationship in the first place, whatever "it" is for you.
Tuesday, July 14, 2009
Brothers Under the Bridge
I had a life once. I was right in the middle of it. I was the go-to girl. I was alive in a way that feels like the complete opposite of the person that lives in my body now. I was fast, and tough. And I could go far. Show me the hill and I'd show you my dust. I was fun. Big smile. Playful and joyous. A badass in a running skirt. Knew all the answers. Pretty and confident.
Now I sit and wait. I'm still. I'm weak. I've been replaced by people who have life and strength in them like I once recognized in me. Life moves on, but it's too fast for me now. I smile from the sidelines, but it's fake. I'm so jealous. Jealous of the ones who are in the middle now, and make it look so good. I wait and watch, and want their lives. Will they remember me after they all move on with their strong muscles and fast legs and shiny bikes? Their smiles look real because they're doing what they love and what makes them alive. Their eyes twinkle at each other, but mine feel dull.
I heard a song last month that hit home. It's not about illness, but about neglected veterans. The fall can happen so fast. The song is the title of this post and belongs to Bruce Springsteen. The line is: "One minute you're right there... then something slips."
Now I sit and wait. I'm still. I'm weak. I've been replaced by people who have life and strength in them like I once recognized in me. Life moves on, but it's too fast for me now. I smile from the sidelines, but it's fake. I'm so jealous. Jealous of the ones who are in the middle now, and make it look so good. I wait and watch, and want their lives. Will they remember me after they all move on with their strong muscles and fast legs and shiny bikes? Their smiles look real because they're doing what they love and what makes them alive. Their eyes twinkle at each other, but mine feel dull.
I heard a song last month that hit home. It's not about illness, but about neglected veterans. The fall can happen so fast. The song is the title of this post and belongs to Bruce Springsteen. The line is: "One minute you're right there... then something slips."
Saturday, July 11, 2009
Gone...
My cardio is gone. An easy 5-miler has become an ugly, painful marathon effort. (Preface: This is where I reconcile the difference between gratitude to be up and on my feet with unwillingness to accept what I've gotten back so far as definitive.)
My cardio is gone. I might as well be trying to run with 4 cigarettes hanging out of my mouth. I have never worked so hard to negotiate a simple tree root. All of the footwork, gone. A small rolling hill is a 5-story brick wall. All of the power, gone. No endurance. This is the work part. It's not like I was all that good before. But good enough to feel wistful about where I was and how I want so badly to get it back. I want to explain to other runners that I meet that this isn't me, that I'm usually not this slow or winded. Why the need to qualify myself? Lance Armstrong had to have felt this way some days when he went out on his bike after cancer. Fundamentally happy to be on the bike, but the immediate experience is painful, frustrating, and leaves everybody pissed off.
That's right, get mad.
My cardio is gone. I might as well be trying to run with 4 cigarettes hanging out of my mouth. I have never worked so hard to negotiate a simple tree root. All of the footwork, gone. A small rolling hill is a 5-story brick wall. All of the power, gone. No endurance. This is the work part. It's not like I was all that good before. But good enough to feel wistful about where I was and how I want so badly to get it back. I want to explain to other runners that I meet that this isn't me, that I'm usually not this slow or winded. Why the need to qualify myself? Lance Armstrong had to have felt this way some days when he went out on his bike after cancer. Fundamentally happy to be on the bike, but the immediate experience is painful, frustrating, and leaves everybody pissed off.
That's right, get mad.
Friday, July 10, 2009
How 40 mgs are treating me
I'm happy to report a perceived reduction in a Prednisone side effect that's been bothering me for a while now: the joint pain/stiffness in the knees and hips. I wrote last week that I finally noticed some physical symptoms of withdrawal (fevers mostly) when I made the drop from 50 down to 40 (after being held on 80 from mid-February to mid-May). I'll happily take a little bit of physical withdrawal in exchange for my knees back. I have started walking with more fluidity, speed, and confidence just in the last week or so, and the absence of pain/stiffness is liberating. Ahhhh. However... every other side effect is still here. Oh, yes. Stupid mistakes at work, eyeballs bursting out of my head, speech that makes no sense, sunburns after 30 seconds, etc. I guess I'm happy that the immediate physical ailments that I'm battling right now are drug effects rather than my disease. I mean, the effects of my disease are serious and the damage is great, but they are now part of a long-term rehabilitation project rather than an immediate disruption of my daily activities.
Again, I know that this disease can behave like a yo-yo at any given point in time. I write as if "feeling better" will be my state from here on out. Obviously, I hope that this is the case. But I know that the experiences of many are much more inconsistent. It's been 6 months for me since I started this journey to hell and back, and the disease could very well send me to hell and back many, many more times. I know that I am one of the fortunate ones for now.
Again, I know that this disease can behave like a yo-yo at any given point in time. I write as if "feeling better" will be my state from here on out. Obviously, I hope that this is the case. But I know that the experiences of many are much more inconsistent. It's been 6 months for me since I started this journey to hell and back, and the disease could very well send me to hell and back many, many more times. I know that I am one of the fortunate ones for now.
Friday, July 3, 2009
Fever
I have experienced a fever like the one I had last week a few more times. I woke up with a fever Thursday and Friday this week and felt pretty bad through the morning. However, it goes away as the day goes on, and I feel fine by evening. I don't know what to make of it other than Prednisone withdrawal. Fun with steriods, I guess.
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