Lupus and Me: Where did I go?

yes, it's me
yes, it’s me

lupus face

“What did we do for Christmas?”, I asked.  This couldn’t be right.  How could I have lost so much time.  Lupus, is an autoimmune disorder that can wreak havoc on so much of the body.  In my case, it had launched an attack on my organs, connective tissue and joints.

Some time ago, I requested a copy of my complete medical record.  I wanted to know what happened.  I was physically present for Christmas– there are pictures to prove it.  The events fuzzy.  My brain had swelled slightly.  One of many new diagnosis that season was lupus cerebritis.  Most people don’t have a baseline scan of their brain.  Brain size varies and slight inflammation isn’t easy to detect.  Samples of spinal cord fluid, biopsies and multitudes of scans tried to help doctors figure out what had caused this flare.

After researching lupus, I began to understand why it took so long to get a diagnosis of lupus in the first place.  There isn’t one specific test that will confirm a person has lupus. It presents in different ways and many times, people just think they are sick and it will pass.  I did.  I had grown used to the joint and bone pains growing up.  I could manage that.  It wasn’t until I woke up one morning to find that my legs and lower abdomen area had swelled twice their size that my condition required a concrete definition.

The first big flare I had was most likely triggered by a bad case of pneumonia that I foolishly tried to wait out.  Like many, I didn’t have health insurance and didn’t want to create another bill to pay.  It didn’t pass.  Instead, something in me triggered a lupus flare.  My kidneys began to leak protein, causing the swelling in the lower part of my body.

I was afraid to stand up.  I shook my husband’s shoulder and motioned to my legs.  I couldn’t speak.  I thought I was dying or in a bad dream.  Not even my maternity clothes fit me.  I didn’t care about fashion that morning but I really couldn’t find anything to wear.  I put on a pair of my husband’s pants and we headed to the hospital.

Lupus cerebritis can cause memory loss and changes in behavior.  I became a different person from one day to the next.  In many ways, I am thankful for the grayness of the memory loss.  Some of the flashbacks are so unbelievable that I dare not open parts of the medical file I still have locked away.

Chemotherapy is an option for very serious cases of systemic lupus.  It worked.  The best way to explain it is that it was like a CTRL + ALT + DELETE for my immune system– almost like a reset. Massive doses of prednisone, a steroid, and chemotherapy were two major components of the treatment.

I bought wigs and wore them to work.  Sometimes I’d throw wig to the wind and go without.  I fell in love with some of my wigs but eventually had to throw them away after the cat got a hold of them.

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Steroids are a common treatment for people with lupus.  Most often following serious flares, massive doses are prescribed and then tapered down.  Plaquenil, an antimalarial, is another common treatment.  It helps with the joints and swelling.

Thank you for continuing to follow my blog.  The words of encouragement and kind comments really mean a lot.  Thank you!

I am working on a book that will provide a more in depth look into my life with lupus and more…stay tuned.

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