Prednisone and Optimism and a Whole Lotta Talk

I’ve been taking a break.  I didn’t plan it.  It started with the rib attack, which is still hanging on a little bit.  I had to double my prednisone, and that produced restlessness.  Instead of being able to sit nicely at my computer and type, I was reduced to knitting frantically, hour after hour, while I watched television.  This was good for my niece’s blanket, where I’m on the third strip of rectangles.  Not so good for blogging. 


In this state, I don’t forget about writing.  On the contrary, I write whole essays in my head while I bathe, knit, eat, and probably in the little bit of sleep that I’m getting.  For instance, I was bathing today and I thought about my sister’s new hairdo.  She has it done up all over her head in little twisties.  As it grows out, she sees a stylist who twists them more, including the new growth.  In my bath, there was this conversation:

“These are twist-es, not dreds.  They not the same, you know.” 

“And how I’m s’posed to know that?  What class I take teach me about twist-es and dreds?”

No, this conversation didn’t really take place, and if it had, it would have been in our usual impeccable English (only laughing a little, folks; I am such an intellectual snob).  But I was imagining right along, seeing us sitting together in Atlanta, intent on discussing the hair. 


Yesterday, I wrote a whole post in my head, explaining the why and wherefore of getting fed up with being chronically ill.  It went something like this:

I’ve been sick for 16 years.  It’s not exactly the being sick that gets me; I can deal with personal illness.  My sickness comes in distinct episodes that really mess up my body (memory, strength, endurance) and my household (bills, clutter, deferred maintenance).  After each episode, I have to work triple-hard to try and get back to where I was.  I never quite make it back to the pre-flare level, resulting in a slow decline over time.  Whatever improvement I made is wiped out by the next flare.

What I’m defining is a sure path to hopelessness.  Or so I was thinking.  At some point, I began to see myself as hopeless and to see my efforts as useless.  I was living with acceptance of that verdict, which I had given to myself.  And…living with that reality, a conclusion in a situation that was still evolving, made me accept resignation as my position. 

I’m of the “change your mind, change your life” belief.  Now that I realize that I chose resignation, I’ve moved 180 degrees in my mind.  I can already see the difference.  I’m not “doing” anything but changing the mindset.  I know change will follow.

Now, here’s the amazing part.  I went for chemo recently, my fabulous B cell-killing treatment.  The doctor told me that from here on, we will schedule the treatments closer together, so that we will keep my B-cells from coming back enough to produce flares.  Imagine!!!  Lupus without flares.  An opportunity to stay well, to improve and have a course that is steadily better instead of the Sisyphus life I’ve been living.  Ironic that I had changed my mind before I even realized this was an option.  I had not even asked the question.  Hello, it takes optimism to ask positive questions.  When I was being resigned, I expected to hear negative answers, so I didn’t think to ask. 

Whew.  I think too much when my dose goes up.  This was actually about a two-hour process, writing the post in my head.  I left out a few words.  I could elaborate ad infinitum.  I won’t let me be that mean. 


I did something fun this week.  I committed to something in advance.  The Children’s International Summer Villages is at the end of their village in Chattanooga, and they needed volunteers to provide vegetarian meals.  Three days ago, I signed on to bring a meal without worrying about how I was feeling or how the cooking would get done.  I knew we’d do it.  It was a family task.  Dayna suggested the main dish and washed dishes.  Chris prepared the vinaigrette from his own recipe and delivered the food.  I made the eggplant and broccoli pasta salad and baked a blueberry bread.  Of course there was enough for the family.  One thing the prednisone doesn’t give me a problem with is eating. 




6 Responses

  1. Congrats on the good news on the medical front. I will continue to keep you in prayer.

  2. Ask your physican for a trail of Provigil. It is off-label for Lupus but is a total miracle drug for me. It lifts the fog and the maliase, and gives me the energy to pick up my feet and move.

  3. Hey doll! Your “house” has always been a “home” to many. Don’t let it’s organizational status effect your head. Love ya!

  4. I always enjoy the writing of my sister. It saddens me to see the suffering you have experienced and yet, it blesses me to see the way you rise above it and brighten the lives of others. Suffering brings out the very best in some people as they are cradled in the arms of God.

  5. Hey there, Essie! This is first venture into the world of lupus and has me thinking about all I don’t know about it. Well, I see I can come here to be educated.. and to keep up with what you’re doing…I’ve not begun prayer today, so guess who’s going to be at the top of my list today? P.S. – I’m fasting and so I should NOT have been reading about the tasty meal you guys prepared for the international children’s village.

  6. eggplant and broccoli pasta salad and a blueberry bread

    I’m suffering now. The pangs of being underfed.

    (ha ha ha)

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