Well, in the spirit of celebration and milestones, it's been about a year since I began to get very, very sick. Let me tell you the story. No, too long. Let me sum up:
November/December 2008: Began falling alot on trail runs. Initially chalked up to clumsiness, but hindsight gives me something to blame it on. Didn't realize it at the time, but was getting weak. Ran Memphis marathon on December 5 and never really recovered. Felt tired, weak, and sore all of the time. Thought I was coming down with the flu, or having some recovery problems. Had trouble doing basic exercises like pushups and ab work.
January 2009: Slippery slope. At beginning of month, could function for the most part. Was trying to run, go to work, etc., although feeling down. Fighting losing battle. As the month went on, got weaker by the day. By the end of the month, couldn't lift my arms over my head, couldn't pull items off of shelves in my kitchen, couldn't dress myself. Started wearing the same clothes for several days in a row. Barely walking.
February 2009: White flag up, I surrender. Can barely walk or stand/sit on my own. Head won't lift off of pillow. Dangerously close to not being able to take myself to the toilet. Need serious help. Got in to rheumatologist. CK's 10,000. Had muscle biopsy in left deltoid, positive for Polymyositis. Began steriod/methotrexate regimen.
March-May 2009: Most days spent in extreme weakness. Waiting for drugs to do their work, trying to build up strength through exercise. Alot of time off of work, glad for my employer's support and flexibility. Family and friends helped me remain independent, drove me around, cooked, cleaned, and spent time with me. Awash in fear, gratitude, heartbreak, and anticipation.
June-August 2009: Good enough to function with normalcy in daily activities. Exercise progressing, especially strength training, helping immensely. Running more and more. Starting to look like myself again: gaining weight back, muscle tone and skin color improving.
September 2009-present: For most purposes, feel "normal". Am close to doing all of the activities that I enjoyed before. Have done some challenging physical activities such as multi-day running/camping trips, and a few longer runs. Ran some satisfactory 10K times. Still feel some symptoms: occasional "tired" or "heavy-feeling" muscles... some days I feel like my legs are churning but I go nowhere, cartoon-style; pain in my quads; hands still stiff and missing some range of motion. I get sore from activities more easily now, it takes me a little longer to recover. Have tapered prednisone to under 10mgs/day, so a little nervous about the next several months. Still on high Methotrexate dose, my liver flirts with high enzyme levels occasionally. Planning on doing some spring racing, notably the Sylamore 50K and Boston Marathon.
It took about 6 months to become functional in my usual roles, and another 2 or 3 to put the cherry on top and really engage in my favorite things. At this point, I am pretty satisfied. If I were to "be" like this for the rest of my life, I would consider myself lucky. However, I'm pretty sure it doesn't work like this. I get nervous every time I feel a little weary or experience some muscle soreness. After each drug reduction, I experience a few days of weakness before I feel my own strength picking up again. Somewhat like the sensation of flying... at initial takeoff, you dip just a little bit before you feel the thrust carry you upward. This sensation scares the hell out of me every month when I take one less pill. When my fingers get too cold, I wonder what kinds of organs/tissues my immune system is raging against at this very moment. When I notice my eyebrows get a little thinner, I wonder if or when Polymyositis will adopt the same permanence in my body that Alopecia has.
I have become very interested in autoimmune disease. Most reasons are selfish... obviously, I'd love to see research breakthroughs that might enable me to live a long, healthy life without having to go through roller-coaster cycles of disease flares, each time leaving your body a little weaker and more damaged. But also, when you look around, you notice people with these diseases who are all fighting; each battle epic, each flare a physical and emotional trial. There are so many of us out there.
November/December 2008: Began falling alot on trail runs. Initially chalked up to clumsiness, but hindsight gives me something to blame it on. Didn't realize it at the time, but was getting weak. Ran Memphis marathon on December 5 and never really recovered. Felt tired, weak, and sore all of the time. Thought I was coming down with the flu, or having some recovery problems. Had trouble doing basic exercises like pushups and ab work.
January 2009: Slippery slope. At beginning of month, could function for the most part. Was trying to run, go to work, etc., although feeling down. Fighting losing battle. As the month went on, got weaker by the day. By the end of the month, couldn't lift my arms over my head, couldn't pull items off of shelves in my kitchen, couldn't dress myself. Started wearing the same clothes for several days in a row. Barely walking.
February 2009: White flag up, I surrender. Can barely walk or stand/sit on my own. Head won't lift off of pillow. Dangerously close to not being able to take myself to the toilet. Need serious help. Got in to rheumatologist. CK's 10,000. Had muscle biopsy in left deltoid, positive for Polymyositis. Began steriod/methotrexate regimen.
March-May 2009: Most days spent in extreme weakness. Waiting for drugs to do their work, trying to build up strength through exercise. Alot of time off of work, glad for my employer's support and flexibility. Family and friends helped me remain independent, drove me around, cooked, cleaned, and spent time with me. Awash in fear, gratitude, heartbreak, and anticipation.
June-August 2009: Good enough to function with normalcy in daily activities. Exercise progressing, especially strength training, helping immensely. Running more and more. Starting to look like myself again: gaining weight back, muscle tone and skin color improving.
September 2009-present: For most purposes, feel "normal". Am close to doing all of the activities that I enjoyed before. Have done some challenging physical activities such as multi-day running/camping trips, and a few longer runs. Ran some satisfactory 10K times. Still feel some symptoms: occasional "tired" or "heavy-feeling" muscles... some days I feel like my legs are churning but I go nowhere, cartoon-style; pain in my quads; hands still stiff and missing some range of motion. I get sore from activities more easily now, it takes me a little longer to recover. Have tapered prednisone to under 10mgs/day, so a little nervous about the next several months. Still on high Methotrexate dose, my liver flirts with high enzyme levels occasionally. Planning on doing some spring racing, notably the Sylamore 50K and Boston Marathon.
It took about 6 months to become functional in my usual roles, and another 2 or 3 to put the cherry on top and really engage in my favorite things. At this point, I am pretty satisfied. If I were to "be" like this for the rest of my life, I would consider myself lucky. However, I'm pretty sure it doesn't work like this. I get nervous every time I feel a little weary or experience some muscle soreness. After each drug reduction, I experience a few days of weakness before I feel my own strength picking up again. Somewhat like the sensation of flying... at initial takeoff, you dip just a little bit before you feel the thrust carry you upward. This sensation scares the hell out of me every month when I take one less pill. When my fingers get too cold, I wonder what kinds of organs/tissues my immune system is raging against at this very moment. When I notice my eyebrows get a little thinner, I wonder if or when Polymyositis will adopt the same permanence in my body that Alopecia has.
I have become very interested in autoimmune disease. Most reasons are selfish... obviously, I'd love to see research breakthroughs that might enable me to live a long, healthy life without having to go through roller-coaster cycles of disease flares, each time leaving your body a little weaker and more damaged. But also, when you look around, you notice people with these diseases who are all fighting; each battle epic, each flare a physical and emotional trial. There are so many of us out there.
well written blog. I have a website that I started a few months ago for all auto immune and neuro muscular disorders. Your story would fit in nicely on the site. please look at
ReplyDeletehttp://sites.google.com/site/survivemyositis/
and give me permission to add your story, then give me links to other sufferers that I can contact for their stories. Roly
I'm glad you are doing well Katie. Hopefully you will be one of the roughly 20% of polymyositis/dermatomyositis patients who goes into very very long term remission.
ReplyDeleteSorry to hear about the Raynaud's Syndrome though. That is new for you isn't it.
About your liver enzymes (ALT & AST): Mine have been high too, and that had me concerned because some of the medicines I've tried have specifically been very bad for the liver. However, my rheumy, neurologist and family doctor have all told me that these liver enzymes also occur in the muscles so not to worry about my liver if the CK (SCK) is elevated at the same time. Of course that was advise for me, and my DM is not in remission.
I hope 2010 is a good year for you!
Hi Roly! I have visited your site, it's wonderful! Please take whatever you'd like from here and post it.
ReplyDeleteI'm really not sure what to write about now that I'm fortunate enough to not have this disease dominate my daily life anymore. I hope that it is this way for a long, long time, although we never know, do we? I get a bad feeling sometimes, because I have alopecia, and it is just raging. I have been totally bald and without body hair for about 10 years now, so I feel like the mechanisms that are at work in my immune system are pretty much firing red-hot all of the time at the wrong cells. So I am always very nervous that the wolves are at the door.
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