Pain vs Pressing On

Is there ever a good time to share my lupus diagnosis with "new" friends?  Do they need to know?  Am I a burden?  Will they be spooked?  Am I defective merchandize (so I have been told)?  Oughtn't I keep it to myself and not bother?  Will they even understand?  How savvy are most strangers to autoimmune disorders?  How should I react when they look puzzled?  Do I have the patience to explain?  What do I do with all the "advice and cure" they give?  The patronizing?  The judging?  The superstitions?  The "poor thing, you"?  Should I tell them that it's unlikely that I will ever die from lupus soon?  Just because I haven't?

These are real situations that all of us lupus patients live with everyday.  Recently I have somewhat encountered all the above scenarios.

It has not been easy the last three or four months.   Three years ago I suffered a serious lupus setback.  Chemotherapy was added to my daily RX regimen.  Although my blood studies revealed more disease activities, the readings have been consistent.  In January I noticed a searing pain in the gut.  It comes and goes.  By February the pain became very severe and caused violent vomiting.  Upon clinical exam I was told that my liver was enlarged.  Two weeks later I broke two ribs (9 & 10) in the lower right quadrant from this enlargement.  The chemo that I was taking was probably the culprit.  So I stopped taking it after discussing with my rheumatologist.  So far I have only had two relapses.

Meanwhile, I continue on with my life and all its sundry responsibilities.

I can now answer the questions from the first paragraph--just my own observations and conclusions.  There is never a good time to tell new friends I am a chronic sickie.  They don't need to know.  I am not a burden.  Yes, most of them are spooked.  In some way, I am defective; but then again, who isn't?  I do keep the daily-going-ons to myself.  No, most people have not the intelligence nor interest to know about autoimmune diseases unless they have one.  If they look puzzled and wanted to know, I will patiently explain.  Friends will share with you all kinds of "diet cures" because they care about you.  Got to love them for that.  In terms of patronizing, judging, superstitions, and the "poor thing, you"--O well, I think I am better off not being close to them.  How I will die?  I don't know.

Treatment options for me are quite limited.  Corticostroids and chemo are no longer viable options.  What would I do if the blood studies two months from now reveal more disease activities?   I think I will let tomorrow worry itself.

I will just press on.  

PAIN vs PEELS

PAIN vs PEELS

Accumulation is part of human experience.  Looking at my own handiwork is rather daunting.  The stuff we own become the owner of us.  Unbeknownst to most, the act of collecting and gathering has a rather negative side.  As we agglomerate, we also build forts around to guard these possessions.  This is all-inclusive.  We become more dimensional, more complicated, more evasive, and more multi-layered.

Life is not stories.  Life is incidents stringed together.  Each happening creates a minute sculpted impression as adornment to our persona and to our souls.

There is nothing more impressive than chronic and unmitigated pain.  Maneuvering life with pain requires a clever mind and a steady grip, which, don't always come to me.

Pain is part of peel-building.  As society has certain expectations as to how people ought to be, we "hurters" must accommodate to survive.

Each time I reply "I am fine" to the greeting of "How are you?" I just put on another peel.

Social grace is the grandfather of little white lies.  In this culture we have yet learned to accept the darkness of the human experience.

Over the last three decades these peels gracefully accompany me.  Now I think and I know they must come off as they have become heavy and cumbersome.  I have been disoriented by their sheer existence.

Onward and inward.