Wednesday, April 18, 2012


I have been playing with this post in my head for a few weeks now. But this weekend really set off my frustrations.

I had made plans for the weekend, no more than a "normal" person could handle. My 9th Benlysta infusion was on Friday (a week late). I left wrok early and went home to take a nap so I was ready for what was ahead of me. That is really when my frustration hit the roof.

By Sunday I was so exhausted and in so much pain I could barely deal with it. I want to be able to live my life. I want to be able to make plans and follow through. I want to not have to worry about flaring any more.

Sunday I started a flare. My first one in months and this maybe the most discouraging one. What can I say. I haven't had one and I was proud of that. I got through Sunday doing all that was on my list (yep, pushed myself). And then Monday morning came and I WENT TO THE GYM.... what is the world was I thinking. When did I get into this I can do it all no matter what mentality?

And the real surprise... I over did it at the gym. I hurt so bad I can hardly walk (even two days later). Sitting down or standing up is the worse! I've heard the comments of "no pain, no gain", "go back to the gym and work those muscles again it will help", "if your sore stretch".

These comments drive me INSANE. My body isn't a normal body. My body doesn't heal like others. Pain is a bad thing.

Why do I do this to myself?
Why do I think that any drug will make me "normal"?
Why do I expect Benlysta to make is all go away?

The flare has died down, no rash on my face (my neck & back are not so lucky). The chest pains are lessing. But I don't know if that is because my focus is on the fact that the squats I was doing with 25# killed my legs.

Time for me to stop expecting that I will feel better. Time for me to go back to listening to my body and accepting what is dealt to me.

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