Lupus-Disability Awareness 2013-Glossary Project

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Aurora9912's avatar

LUPUS aka systemic lupus erythematosus, which is the most common form of lupus, is an evil disease.  According to "Lupus is a chronic inflammatory disease that occurs when your body's immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart and lungs."  The word "nonspecific" is used often by your doctors-plural.  It can and does affect every system in your body.  Tomorrow something entirely new can show it's ugly face.  There is no way for you to know what to expect.  There is no way to research this disease because everyone's lupus is different.  I had already been disabled 10 years ago by another disease called erythema nodosum that the doctors think is probably related to the lupus.  It caused nerve and tissue damage in my lower legs.  Not sure what month but within the last year I was diagnosed with lupus as well.  Like I needed more pain?

My lupus?  Pain 24/7 for over 10 years now.  Standard pain is a deep bone ache in my lower legs but quite often there are "flaming knife stabbed into the bone" pains or "someone hit me several times with 2 x 4" pains.  I missed my own mother's funeral service because pain prevented me from getting ready-even though I started 3 hours earlier.

Now I have the onset of lupus arthritis so all of my finger and hand joints are involved.  I have insane muscle spasms, sometimes just one area and other times my entire body is like a giant vibrator.  I am supposed to be happy that it is lupus arthritis and not regular arthritis because it generally doesn't cause joint damage.  I used to be known as "The Queen of All Things" by my friends because of my limitless storage of useless knowledge in my brain.  I can't read a list of 5 items now, flip it over and write them down.  It's gone. 

I feel exhausted when I wake up.  I've fallen asleep while eating.  When reading or watching TV I am constantly flexing and stretching my legs and feet because if I don't my Achilles tendons tend to freeze up making it difficult to walk.  Finally I start drawing again after about 25 years and this happens.  Trying to draw with muscle spasms requires a lot of patience and a really good eraser.  Lately I haven't had that patience.  Unsurprisingly I suffer from anxiety and depression.  I am angry.  I have spent my life trying to be a good person, treat others with kindness, blah, blah, blah.  Instead karma kicks me in the ass.  I do wonder if in a previous life I earned this.  I wonder what will appear next, how long will I live?  They say the average time from diagnosis to death is 20 years.  I wonder sometimes if I WANT to live that long.        


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