- I am a 31-year old woman who lives in a great town, has a fun job, the coolest friends imaginable, and has a generally smashing time in life. Until the beginning of 2009, I enjoyed running, ultra running, road racing, cycling, and any other sport I could get my legs under. Suddenly, everything came to a screeching halt. I was diagnosed with a serious, crippling, and life-changing disease called Polymyositis through which I am attempting to navigate. Polymyositis isn’t the worst disease that can happen to you, but it can present some significant challenges and change your life in drastic ways. The onset is particularly dramatic, scary, and difficult to diagnose due to its rarity and extreme physical effects. This page serves to focus on that part of my life, both as an outlet for my own thoughts, as well as a resource for anyone else out there who is looking for others’ experiences to follow.
Wednesday, March 4, 2009
Trying to put this fire out is proving harder than I thought. I have been on 80mg/day of Prednisone for 1 week, and 40mg/day for 2 weeks prior to this one. I am as weak as ever above the waist… I cannot raise my arms above shoulder level and cannot lift my neck off of the pillow. My hands are useless, I can perform basic push/pull functions of very little force, but with no dexterity. I can still sit/stand on my own, which remains the bastion of my independence and functionality.
I am perceiving feeling the start of some Prednisone side effects. My joints feel like those of a 100-year old woman. My hips and knees feel taxed while walking, the bones in my shoulderblades feel like they grind against everything they touch, like the mattress or backs of chairs. My eyes feel puffy and slightly blurry. I feel uncomfortable in my own skin, like a snake that needs to molt.
Every day that goes by is one more that I hadn’t planned on feeling this way. Every morning begins with an internal curseword when I realize that it’s still here. In general, I still maintain what I think is a decent level of optimism and foresight, but I also cycle through fear, disappointment, and just plain weariness on a regular basis. The physical weariness definitly takes its toll. I sometimes compare this to running a marathon with no sense of distance or time. Are we at mile 2 or 23? If I could know the distance and terrain ahead, I could plan my race, both physically and mentally. The weary part is putting one foot in front of the other with no idea where I’m going, how long it’s going to take to get there, or even if there is a definitive finish at all.
Today is obviously a little bit of a downswing in mood. I’ll bounce. Really.
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 verbatim, “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 noticeable 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.
Katie has so much more to say about her journey which is very inspirational. To see more visit her blog www.polymyositisrunner.blogspot.com.
Submitted by: Katie Helms 18-10-09