Clearly I lied, and I haven’t blogged regularly (again). Again, I have no good reason except that I haven’t had much to say. People ask me how I’m feeling, and all I can say is “today is a good day” or “Hanging in there.” Even on my good days, there’s pain, there’s making accomodations for my limitations. There’s always an awareness of my diseases lurking in the background. Frankly I haven’t wanted to blog about that and repeat those things to you because chances are if you are reading this you either a)know exactly how I feel and are tired of it too or b)know me in real life and have to deal with complaints there.
But really, I’m hanging in there. The Enbrel/MTX/plaquenil combo seems to be just what I needed. I am down to 7 mg a day of prednisone (woo!). This Saturday I am going down to 6mg. Except for withdrawal symptoms, I haven’t had much problem going down on it, in terms of joint pain. So that’s been pretty amazing. The fibro pain is still pretty icky, but I am not sure what to do about that. We’re at the top of the dosage for lyrica. Dr. K thinks I just need to get more active. So..I’m trying. I’m trying to walk more. Started physical therapy again for my back, which seems like it’ll be good, too. I have a great physical therapist, and I already feel like it’s been worth going, after one session.
So, back to walking. I’ve discovered this really interesting thing (interesting to me anyway!). A couple of months ago I got a pedometer so I can see how many steps I take a day, and I pay close attention to the number of steps and how I am feeling. I have found a direct correlation between how I feel and how much I walk. In fact, I now know that if I take under a certain number of steps, I am going to feel crappy the next day. So I have a baseline now for how active I have to be, which has been really helpful. And it’s also been great to feel like I have control over one thing that can make me feel better.
The trick has been that I live in Wisconsin and it’s cold outside! So getting enough steps takes some creativity, lots of pacing around my house. Lots of short walks with the dog. I am toying with getting an elliptical machine so I want to have to go outside but I can still be active. Anyone have suggestions?
Next week I see Dr. K again. And then we’ll see where things stand, I guess. Hoping you are all hanging in there, too!
The New Normal 