My Body Became Benedict Arnold or All About Lupus

Systemic Lupus Erythematosus, SLE, is a terrible auto-immune disease.  It turns the body into a big fat traitor - maybe even worse that Benedict Arnold.

Antibodies which should go after viruses and diseases to protect the body, become traitors and attack the body wherever there is connective tissue. Which is everywhere. Most deaths by lupus are kidney failure and heart disease.  

As a teen, I was poked and prodded by doctors who would look at me, then at each other, then cluck,  "Yes, it looks like lupus, but we just can't prove it."

The 'looks like' part was my face.  I had healthy looking rosy cheeks with the rosy even going across my nose.  A marking just like the furry face mask of a werewolf! Really just a regular wolf. And that is how lupus got its name. From Canis lupus and her furry mask.

The rosy mask was a curse.  I looked so healthy, but was so sick. Waking up with what looked and felt like a sprained ankle when I hadn't sprained my ankle.  Barely able to use my hands because my wrists hurt so bad.  Unable to play my violin because my left index finger joint was so swollen and inflamed. Having super high fevers and stabbing pains in my back. Sleeping for days. Watching the ends of my fingers turn completely white when they got cold. Sitting down for coffee and a chat, then barely being able to walk because my knees weren't working right. Having such paralyzing fatigue that I just wanted to lie on the floor and cry. I was convinced I was a lunatic.

I had lots of tests that proved nothing.  Some not bad at all, but some so disgusting.  I speak of the radioactive kidney scan which required a prep.  A nurse came in with a glass of castor oil to which she added a little cup of baking soda.  I had to drink the whole nasty mess.  Gag! So please never complain to me about your colonoscopy prep.  Gator Aid? Castor oil?  You pick.

If lupus is suspected today, the patient just has a blood test.  In 1967 the only way to find lupus was the bone marrow test.  The doctor sticks an elephant needle into your sternum without any Novocaine or anything and sucks out some bone marrow.  So simple yet so excruciating. OMG!

I remember thinking, "How can I run out of this building without any clothes?"  And I remember telling the nurse to keep talking so I could focus on her voice and not on the skreek-skreek-skreek of the needle as it penetrated my unsuspecting sternum.  When the needle sucked out the marrow, it felt like my very soul was being extracted.  Yikes!.

The genius head of the hematology department at Indiana University Medical Center did the bone marrow test and gave me the diagnosis. I was in ecstasy to find out that I was not crazy, but had something called Systemic Lupus Erythematosus.  The unknown can be so frightening.

Here I am fifty years later.  I've had to take some nasty drugs that had nasty side effects. Like 6-Mercaptopurine that caused horrendous birth defects and required a weekly lab to check for depressed bone marrow.  Hey!  I need all my bone marrow!

And loads of prednisone (steroids), that made me eat like a pig and get a moon face that made me look like a chipmunk. I also discovered just before going down the aisle in my bridesmaid dress, I had a light fuzz of hair on my back. So pretty in pink. Prednisone also  leaches calcium from bones and causes muscle wasting in arms and legs. I have taken lots of other drugs, but not with such drama!

I have had to avoid sunlight, which can trigger a flare up. In those days sunscreen was like the lube truckers put on their 5th wheels and had to be made by a pharmacist. I have lived with the fatigue (naps don't help), and the joint pain. 

But I have triumphed.  Hoorah!  I have had a great life and plan to continue to have an even better one.

What lupus has done to my body is unforgivable. Who can I sue? By trying to reject my own kidneys, the filter screens have been damaged.  The damage caused high blood pressure which caused more kidney damage.  A vicious cycle.  Imagine that the filters should be like window screen. Mine are like chicken wire. 

That is the story of lupus and I and why I need just one good kidney! 

For more information about lupus, visit the Lupus Foundation of  America at https://resources.lupus.org/. 

And Benedict Arnold can go to you know where.

For more information about giving the Gift of Life, contact my exceptional team at IU Health Transplant Center at University Hospital in Indianapolis:  800 382 4602 or 317 944 4370 or online at www.iuhealth.org/transplant.