Killing Me Softly – the Lupus Song of the Day

I answered my own “hard questions” with a light tone, but I never forget that lupus is a killer.  It is a seductive lover, living intertwined with me, sometimes giving me the freedom to have a life and enjoy myself  and cultivate fresh hope, sometimes reeling me in on a very short leash and meting out severe punishment and damage.  I think that this relationship began decades ago. 

A few days ago I wrote about having colitis during my senior year of college.  I was 20, and very little was known about autoimmune disorders.  Now I understand that the colitis was a harbinger of things to come.  At the time, it was seen as an isolated illness.  There was no curiosity about why a 20 year old student would have colitis, and no attempts to follow up after it was healed.  Jump to age 23.  I was in medical school, minding my own business, when I developed a severe case of pleurisy.  I had pain in my chest so severe that I couldn’t walk for fear of making something move.  Again, I was treated for the single event, and again there was no investigation of why I would be suffering such an unlikely (for my age) event.  It was not related to the previous illness in the minds of the docs who treated me.  Next, it’s 1983 and I’m a resident, training to be an internal medicine specialist. I’m at the Johns Hopkins Hospital, which has an affiliate that is totally dedicated to autoimmune and kidney disorders-the Good Samaritan Hospital.  As a matter of fact, I’m doing a rotation on the connective tissue unit at Good Sam.  And…I develop esophagitis.  Every day I have burning pain in my esophagus, sometimes I can’t eat, and I am tired and miserable.  In that setting, you would think someone would put it all together, but no…I wind up referred to a gastroenterologist (stomach specialist) who puts the tube down, looks at my esophagus, says “esophagitis” and puts me on meds with, once again, no reference to my previous history or my other, systemic symptoms. 

I went on like that, with lupus paying those infrequent, brief courting visits every few years.  I know that my brain lesions were present more than 20 years ago; it’s just that CT scan was fairly new and no one connected those particular kinds of abnormalities to lupus yet.  I wasn’t diagnosed with lupus until I developed full-blown systemic symptoms accompanied by severe joint pains.  I was 35.  My daughter was 4. 

When you live with a lover like lupus, it’s like being an abused partner in a relationship that you can’t leave.  Sometimes your lover is sweet and kind and treats you so well that you wonder if your memory of the last bad time is faulty.  Then, without warning, he slaps you silly and you are down again.  Sometimes you are down for a long, long time.  The misery and hopelessness and helplessness slips in and chokes the life out of you.  At the end of it all, you are a little closer to death. 

If you keep your wits about you, fewer and fewer of the episodes catch you by surprise.  You are alert to the nuances of every comment and action.  You know the moods of your lover.  You tiptoe around the things that will annoy him.  Surreptitiously, you research your means of escape – the new drug, the latest preventive lifestyle change, the counseling on how to endure your relationship.  You make baby steps towards leaving your lover.  You keep your hope. 

March 11 is National Lupus Advocacy Day.  Talk about lupus to someone. 

Peace.  Peace.


2 Responses

  1. I didn’t mention before that my sister was being treated at, and later died at Johns Hopkins. And her husband (2nd; marriage of 20+ years duration) was a terrific caregiver for her. Her children were grown – it was more dealing with her grandkids. She did continue to work almost until the last year – as a psychiatric social worker for Baltimore County Courts.

    You bring up great points to deal with in the event of any serious illness. I didn’t know about 11 March, but I’ll mention it in my blog tonight.

  2. I was diagnosed with Lupus (mixed type connective tissue disease) approximately 5 years ago at 54. The only medications that worked for me were Cellcept and Tracleer.
    My disease is being controlled by these and I am doing quite well.

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