Two things that have been on my mind lately…
A large part of the reason I haven’t been consistently blogging for awhile is because I am clinically stable. I have been for awhile. Everyone, please knock on wood.
Because of that, I feel like I don’t have as much to offer right now. That my stable experiences are somehow not relevant to the conversation.
If you feel that way about hearing from patients who are stable, I’m not upset about it. I understand. When you are reading and trying to find bloggers you can relate to when you’re in the midst of a flare, my current health status doesn’t add to that dialogue. Jump back to posts from 2010, there is a lot of health drama in that timeframe.
I share this as a way of explaining a big part of why I’ve been absent for awhile. I honestly don’t know what to think of feeling like I don’t have much to offer right now. Part of me says that’s bullshit, another part of says it’s ok to sit back and marinate on that for awhile.
What I can offer is thoughts on what it’s like to be stable.
Grateful. Happy. More carefree.
Like scared shitless sometimes. Realizing you’re that idiot who walks a wire across the Grand Canyon with no safety apparatus. Knowing that you won’t see the gust of wind coming until you are plummeting.
I have been on my current medicine regimen for 3.5 years. Diclofenac and xeljanz. That is the longest I’ve ever been successful on anything.
Humira was great. Until it wasn’t. Roughly 2 years.
Enbrel didn’t do a damn thing.
Orencia was great 2.5-3 years. Until it wasn’t.
And when it wasn’t, it was like being hit by a freight train out of nowhere. And it is devastating.
I realize that I’m lucky, that even if xeljanz fails me, I haven’t failed that many medications and I have options.
But I don’t want to have to go through that again.
So I carry on with life, enjoying feeling stable, but the fear is always present.
You never really feel normal again, even if you’re feeling better.