Monday, April 27, 2009

April 27, 2009

I have not posted here in a month or so, I've been updating friends & family more through email and Facebook, primarily. From time to time, I'll find myself googling other blogs about Polymyositis experiences just to grasp at any information that I can about others' experiences, so I want to make sure that I don't abandon this medium as well, in case anyone out there can gather any use from it.
Since I last posted, I had a rheumatologist appointment in which my CPK's were measured at 2,600. Considering that I started out at 10,000 in early February when I first walked into the office, this is progress. Unfortunately, however, not enough progress to taper any medications just yet. I am still taking 80mgs/day of Prednisone and 15mgs/week of Methotrexate. Fortunately, I do not feel that I am experiencing the degree of horrendousness that others have described with Prednisone. I am uncomfortable, for certain, but not miserable. I have trouble sleeping, feel pressure in my face and eyes, have sore joints, acne, and facial hair, but none of these things are absolutely miserable. So, either I'm a trooper, side effects are highly individualized, or the other shoe hasn't dropped yet and I'm just being naively optimistic. I'll have to let you know, especially once we start to taper. Speaking of tapering, my next rheumatologist appointment is in a few days. He almost let me talk him into it last visit, but the CPK's were still too high.
Ok, so to get off of the technical Dr/med/enzyme speak...
I am getting stronger every day, but this progress is not detectable on a daily basis. It is more noticable in the form of functionality. All of a sudden I will notice that a task became possible or slightly easier. For example, I touched my own feet for the first time last week, and a whole new world in which I could change my shoes, socks, and clip my toenails came back online. However, I have not had any other major breakthroughs since then, so I feel a little stalled out. Even though I'm sure that improvements have happened in the last week, if I can't utilize them in some way, I really can't detect them. Every day still carries discomfort, weakness, stiffness, and fatigue. I am encouraged when people tell me that I'm looking better and stronger all of the time. I believe them, and can detect this type of improvement since, say, February, when I was pretty down-and-out, but on a daily basis, I really don't feel it. Patience is a major virtue, here. I had written in one of my last email updates that this disease will be measured in months and years... which is the reality of chronic disease. For the first few months, I had treated it as an injury that had a more tangible recovery process. I still hope that I progress in this way, with a nice, linear, upward progression and an endpoint in sight that indicates "recovery". I try not to let the fears creep in that realistically, there is no way of knowing how recovery will progress, the extent that I will regain complete normalcy, and the way in which my life will be permanently altered. It is still early. Life is long, and I hope that in a year or who knows... that this time in my life will be a memory. I keep typing words like "polymyositis success stories" into google... it doesn't return much. I want this blog to become something that a similar search will hit. It has to be.


  1. Thank you for your post...

  2. Found it today and it is still very inspiring. I wish I had found this 2 years ago when I was at my bottom of the barrel. Thank you for doing this. I wish I had thought to chronicle my journey like you have. I'm just starting to get "un-scared" to try out light running and exercise. I was a competitive powerlifter for 8 years prior to being diagnosed and have pretty much written that off as a past-time event. But strive to hit the pavement again and ease back into exercise. Can't wait to keep reading!