Post Soundtrack: Out of Exile by Audioslave
Lupus is terribly confusing and frustrating. It rarely makes sense, never follows a set pattern, and leaves me feeling much more out of control than I'd care to. Currently my frustration is about success where it seems there should be none. The trouble with this success, you see, is that it leaves me waiting for the moment when it stops being successful, which is an inevitability.
Back in November, when things seemed to have gone so well, my rheumy decided to try and work me off of the prednisone. Fair enough, I know it isn't good for me. I've been blessed with few to nil side-affects, but if it was possible to remove the prednisone, I was more than happy to do so.
Only problem was, it didn't work. So he increased my methotrexate dose from six to eight. Tried again, with similar results. The first attempt lasted six days, the second lasted eight. The next appointment is when he declared it was lupus, and he also increased my MTX dose to ten. This time he asked me to wait a month before trying to reduce the prednisone to one and a half pills a day. I wonder if he knew what was going to happen next.
I suspect the impact of being finally diagnosed threw me into a flare. I haven't yet figured out how to tell what is and is not a flare, but it makes sense this time. For a full month, I was in misery. I had my malar rash daily, I took my ibuprofen daily. It was not fun. It filled me with fear concerning how bad things were getting. Then came the point where I was supposed to reduce my prednisone.
Like magic, my problems faded just before I started the reduced dose. Determined to try the one-and-a-half dose, I was nonetheless convinced it would fail miserably. It didn't.
I am now on day six of less prednisone, and it still seems to be working. I suppose I should be celebrating, but all I feel is a frustrated anger. Why couldn't it have spared me the last month? Why did the flare have to fade now? I feel like I'm being set up with a false result, given hope where there isn't any. Perhaps it is a bit defeatist, but who could blame me? There is no way this can stay successful when you consider the last month. It's impossible! But then again, if it does continue to work, maybe it'll open up more options for what can be done.
Regardless, I'm so sick and tired of not knowing. Of being unable to predict. Can I go out to lunch next week? Maybe! Maybe not! Will I be up to grocery shopping tomorrow? I hope so! All I have are hopes, ifs, maybes, and outright no-ideas. It's maddening. It's unfair. But unfortunately for me and the many others who suffer from it... it's Lupus.