Saturday, July 06, 2019

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Lupus Can Attack Anywhere

Lupus....  I should have realized as soon as I saw Irritable Bowel Syndrome is caused by the Central Nervous System.  Most of the problems I've had were nervous system snafus.  Lupus can effect any organ, joints, hair, etc.  It's not unusual for Lupus to kill its victims.  I've known lots of people who fought it, but eventually, succumbed.  I've been very lucky with Lupus.  I either had bosses who wanted to help, or I somehow escaped the notice of ones who didn't.  Before I was diagnosed in 1993, I remember lying on my office sofa, exhausted and sick.  How did no one see me, or knock on my door?
  I had to retire at 58, I could no longer do the work.  The complicated new computer program was impossible for me.  I was so depressed.  It broke my heart.  Lupus had effected my ability to focus sufficiently to learn.  My memory had holes too.   I wanted to remember how I handled cases, but couldn't.  Where I put things became a mystery.  I still suffered from bouts of nausea, joint pain, and more.  That job lasted sixteen years and it was the best I'd ever had.  Our son hadn't finished college yet and I was paying.  (It worked out.)
  Retiring turned out to be healthy for me..  Eventually, we moved to a house with only thirteen steps in total and a quarter acre of land. 
   I love the trees and my garden in the backyard is wonderful.  The back gate leads to a shallow park and field.  If the weather is temperate, and I feel okay, I walk Tuesday there.  We've lived here for thirteen years and I thought my lupus was in remission.  I didn't realize it just changed direction.  Doctors usually either blame all our ills on Lupus, or judge each ailment as separate, and unrelated to Lupus.  Moving to Delaware meant I had to leave my Rheumatologist because he was up in Bucks County, about 70 miles away.  I'm a poor historian.  I tend not to state all my problems.  It took years to find a rheumy I liked.  I've never found a replacement.  I did keep my neurologist.  He's the doctor I'll discuss this IBS with.  With Lupus, when we find docs who listen to us, we have to keep them.  I fell through the cracks often enough to be ruthless.  We have to be.
  Before I was diagnosed, I was a nervous system scholar.  I spent years in the Regional Library researching what was attacking me.  My brain is not as sharp now. Nevertheless, I am resolute.  

#Lupus  #LivingWithLupus #LifeWithLupus #LifeWithAutoimmuneIllness #MildLupusLife #IBSandLupus #LupusIBS

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