Day 3 post-failed-#prednisone-taper:

Sometimes #lupus wins. 

Okay, fine. It’s not that my shoes all suddenly need to be broken in more. My feet are swollen. And fine, the needle on the scale continues to dip. And that pain in my fingers, in my muscles, in my skin, the type that makes me jump at the slightest touch–symptoms I haven’t had in a couple of months–they’re not flukes. They’re not because of allergies or paranoia or thesis-finishing-stress.

They’re because of the prednisone taper. Apparently the 1mg decrease that felt so tiny a few days ago is not so tiny to my body.  

It took fever to convince me. Not just any fever. The used-to-be-daily mid-afternoon low grade fever that settles in like weights in the back of my eyes, presses my shoulders, fogs up my brain and says, “Now would be a very good time to curl up and go to–zzzzzzzzzzzzzzz.” The one I’ve had for three days now.

I talked about prednisone withdrawal and the danger of rebound flares not long ago, still hoping against conflicting data that I’d escape them. I admit I was too disappointed to write about stopping the taper two days ago. Embarrassed, even. I hate losing to lupus.

A friend told me yesterday, “You lost a battle, not the war.” Of course, she’s right. The biggest loss here would be for me to start making decisions that were clearly not right for my body, like continuing the taper despite the increasing flare symptoms.

So, I’m spending more time in bed, passed out. I’m taking more fever and pain meds. I’m asking for and accepting more help around the house again. I’m hoping that popping back up to 5mg of prednisone will do the trick and my body will settle down again.

And I’m trying not to think of this as a failure, because there is one thing I know for sure: if you beat someone down, you’d better be prepared for them to get up fightin’ mad. And lupus, I may be down for the time being, but I’m getting up. You hear me? I’m getting up.

2 Comments on “Day 3 post-failed-#prednisone-taper:

  1. The daily struggle: yes, we may look fine and dandy on the outside, but on the inside we are hurting. I can totally relate, depression and anxiety SUCK! But like you said, we have to keep fighting and will NOT let these illnesses win. We are too strong! Keep fighting. Xo


  2. Rachel – I had no idea you had any of these struggles going on. Invisible indeed. Keep fighting, girl. It’s all we can do.


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