Sunday, December 22, 2013

Hopped up on 'roids

I've spent the past eighteen months in reasonably good health. Well, outside of recovering from my second shoulder surgery and then going under the knife again for my third surgery. Reasonable health is a relative term. I found a biologic that worked extremely well for me and I started to run and bike - a couple of things I never thought I would do. I felt more "normal" than I had in decades - literally.

But now, in my post-operative state, I am flaring. And it's been quite some time since I have felt this poorly. I'm having four to five hours of morning stiffness and hands that aren't working properly. And right now, it's hard to avoid the fact that I have a chronic disease that causes me pain and disability. I can't do what I want to do, and it's been a while since I've had limitations.

In the past week, several co-workers asked about me with concern - they wanted to know if I was feeling OK. I - of course - lied and told them everything was fine. Not everyone wants or gets to know the truth. When I asked a friend about it later, and about the difference they see - he said it was the sadness in my eyes. Good observation. For anyone who knows me, that would be a  substantial change from my usual self.

And I know that sadness comes from pain and fear. The pain I'm actually experiencing takes a toll. It requires an untold amount of energy to lie and pretend at work that everything is wonderful - because it's just not. It is mentally and physically exhausting to be in pain. The fear, is that this is not a short-lived flare, but could be the tip of the iceberg of new drugs and more pain and more inflammation.

Due to my shoulder surgery, I skipped two doses of my fancy biologic drugs as they offer a higher risk of infection which is a bad combination with surgery. Since my surgery I have had two doses, but seem to be flaring nonetheless. I'm hoping this is a temporary set back due to my missed doses, but the downward spiral of "what if? keeps playing out in my mind.

I'm back on prednisone - the drug everyone loves to hate. Short term therapy and a medium dose to kick the flare away - hopefully - and return me to my rightful state. The first day I took 30 mg, kicking off my day with 15 mg. It's been a while since I've been on that high of a dose that I forgot the glory of a prednisone "high". On Tuesday, I felt like a rock star - I really did. I was only half joking when I told people that I was jacked up on 'roids - I felt unstoppable.

I'm a veteran of this whole chronic disease thing. I've had RA for twenty-two and a half years. I know I have been spoiled in the past year and half with excellent health. I haven't really had to behave or think too much about day to day life with RA. And it's hard to go back to that.

I'm still on a Chvrches kick, it seems. Song of the day is "Under the Tide". I'm trying to keep my head up and hold on.







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