Monday, March 9, 2009

March 9, 2009

I am done with doctor visits for a few weeks. The initial diagnostic and treatment implementation phase of this seems to be underway. As of now, my CPK enzyme levels have dropped from 10,000 to 5,000. The normal level is 100. There is still alot of work to do on the inside of my body to stop the immune system attack and bring the inflammation under control. I continue to be on a high dose of Prednisone, and Methotrexate was added for immune system suppression. I will probably be on a combination of these drugs for the next few months or more as we try to get things under control. I can expect to remain without any noticeable physical improvements for another month or so. Part of the unfairness of autoimmune disease is that it is so unpredictable... there is no normal or expected outcome. There is no way of knowing when, how, or to what extent recovery will happen, both in the short and long-term.

I still feel lost in my own life. I have no control over my own body. I have no control at work. I have no control over small things that I drop onto the floor and must leave for gone until someone visits me and can pick them up. I have no control when my feet get cold and I want a pair of socks. I have no control when I get tangled up in the sheets in my bed and can't get out. I have no control when I want a drink with a screw-on lid and can't open it.

I am still fighting this disease in the short-term. I can deal with being down temporarily. Everybody gets injured or sick from time to time. I am ready for a physical fight to get the attack stopped and gain some basic strength and function back. I am prepared for this to take a few months, and I am up for the challenge. This is good optimism. The bad thoughts creep in when I worry about the long-term ramifications of this disease. I have googled too much for my own good, and have seen horror stories in blogs. Where are the people who beat it and are living their polymyositis-free lives? Where are the runners who made a comeback and have a newfound appreciation for their strength and ability?


  1. KH Yes where are the god stories - the people who have won the good fight? I think all the sick people blog because their old hobbies have left them as this condition changes so much. It has for me. I have just been diagnosed (finally after many years) and am happy to have found your blog. Thanks

  2. KH,

    I have been battling PM for three years now. I love to swim, cycle, walk, and workout at the gym as much as possible.

    Having PM makes me aware of the fact that I need to be cautious when I work out. Vigorous exercise can elevate the CK level with some people. Knowing this, I make some adjustments with my weight lifting and lap swimming

    I am glad you have made progress, and I admire your optimistic attitude toward the condition.