My Body at War

Happy to be back.  That’s me.  Back is here, writing.  I write all the time in my head, unfortunately without that electronic connection to my printer that would allow it to be printed out.  Even better would be a line directly to my laptop, so that my posts could be written straight from the brain.  In reality, a lot gets edited from the original brain posts, and that’s a good thing. 

My brain life is sometimes an extension of the life you see, one where I am able to be the before-lupus, before-trauma Essie.  It occurs to me that you probably think the two are the same.  Only those who know me very well, know all of my history, are aware that there was extreme, life-changing trauma in my life before I was diagnosed with lupus.  One could almost say that my life began again, and only slowly, with profound changes, after that time, and the diagnosis of lupus on top of that…Suffice it to say that it is sometimes desirable to visit that “before life” and free my mind from the knowledge and experience it has now.

I will say out loud that the old adage about God not giving you more than you can bear is bullsh-t.  We certainly do get stuff we can’t bear, and we bend and warp under the pressure.  Sometimes we die.  If we are lucky (and maybe there’s more to it than luck, but it often feels like pure chance), we come out of it all with some hope and the knowledge that we’ve endured, and resolve to continue to put one foot in front of the other and make a working life.

Being on the B-cell killer (yes, abrupt change of direction) has given me a different view of my disease.  The B-cell death leaves me with incredible days of waking with the feeling of physical normalcy, and that lingers in my mind after the effect of the drug is gone, makes me keep returning for those long days of IV therapy.  As a new battalion of B cells develops and begins to invade my body, my symptoms return gradually.  At first, every step of their return made me think I was flaring, but it seems that I don’t truly flare.  Flares began suddenly, waking up one morning with stiff legs and feet, using all my energy to walk to the kitchen, lasting for weeks or months in a static fashion. 

Now the B cells return in stealthy fashion, invading joints and tissues a little at a time, making me gradually lose function and increase pain.  Units of fresh B cells have started this time with my back and my feet.  Once again, pain is every step.  Again, I put on my shoes to dull the pain and relieve the stiffness, and keep walking because I don’t want to lose function or stop taking care of myself.  In my mind, I laugh at the B cells, because they don’t know I’ll be getting treatment again next month, wiping them out for another spell. 

There are side skirmishes in this war.  While the B cells make their onslaught, I put out the fires – an infection here, a drug side effect there, always something to keep me on the alert.  My body at war.  Attacked by itself.  If you are prone to guilt, lupus is a double-whammy of a disease.  How good a person can you be if your own body is attacking you?  What secrets in your past make your bone marrow produce an army of cells that rush to hurt you?  What have you done to yourself-eaten, smoked, bathed in, breathed-to produce this reaction?  Is lupus self-hate? 

Okay, so the brain is big on drama this week.  While it is doing its thing, I’m busy producing a totally new product for my store and my craft fair booth.  News at 10.



2 Responses

  1. Keep moving forward. Some days seem so hard, I know! It’s not a fun life with Lupus!

  2. %@#$&&!!!

    Love you!

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: