inflamed

Still on the prednisone. I think I’d like to stop but I guess I’m supposed to taper. I haven’t been on it long, although it’s a high dose and I suppose better safe than sorry. I’m ready to be done with it though. Yes, my hip feels excellent. My gut hasn’t felt this well in some time, and so far (knock on wood) I haven’t had a single GI side effect from the prednisone.

However….every evening something starts up where my neck, shoulders, and upper back are just killing, and all along my lymph nodes is so sore I feel like they’re going to pop. My primary care thinks the pred might have unmasked a minor tonsilitis/sinusitis thing. Sure, why not. My tonsils are of the chronic variety, plus it hurts in all the likely places so that explanation fits. But man, it feels like having a head cold on steroids. (that was a joke, get it?)

And so I’ve about had it with looking fabulous and feeling shitty. I’ll take looking shitty and feeling less shitty, really. However, that’s not entirely why I’m blogging. I’m blogging because I just got a health-reduced lifestyle related smack upside the head and it’s making me feel totally toxic. I need to get this out somewhere, and well, here’s this blog waiting for things to be put into it so what the hell.

I think I’ve blogged about this or related issues in the past here. I’m not sure. I know I linked to Christine Miserandino’s excellent essay, The Spoon Theory, (read it!!!) on the topic of the additive and preemptive ways you limit and are limited when you have chronic, as in daily, health issues. As it plays out over life, the consequences are further reaching than just the things you can’t do. I’ve particularly struggled with the frustration and sometimes near grief over the things I was planning to do but had to cancel. It gets so discouraging sometimes I will simply avoid making plans so I won’t have to deal with canceling them.

On top of my own feelings, which are varied and strong, about cancellations, avoidance, or other manifestations of wellness related limitations, I deal with the feelings and reactions of the people around me. Sometimes these fall short of supportive. E.g., I found out today a family member believes that when I limit myself, I am in fact just fine but would rather not do whatever it is I had planned to do, what I wanted to do, or what this family member wanted me to do.

At the moment, this bit of news leaves me immensely frustrated, discouraged, and disappointed.

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3 Comments

  1. Hi,I hear ya on the prednisone. ive been stuck on because of lupus. wanna ex links?Chronic Chick Talk

    Reply
  2. Glug. I thought about that when I was on it, about what it would be like to have to take it more often. Do you do pulsed doses or all the time? I’m off it now. Feeling better too. I got a week extra of nice pain free hips too after stopping it. ahhhhh…

    Reply
  3. oh yeah, and links sound good.

    Reply

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