Sunday, February 10, 2013

The diagnosis...

As I sit in my recliner thinking over the day's events, I cannot help but smile.  I think back to five years ago and how different life was.  Five years ago tonight, I was lying in a hospital bed in ICU contemplating whether I would leave the hospital alive.  What is wrong with me? How could I be so sick? That morning, my husband, our three beautiful children, both sets of parents and countless friends and members of our church family watched as we dedicated our Grady Jerome to Jesus.  Now, here I am in a hospital room barely clenching life and no one in the medical community could explain why I was near death. What was ravaging my body? How had sickness overtaken me and I had not recognized it? Will I ever leave the hospital? What about my family? My husband? Our children?  Questions rolled through my mind like the tide rolling into shore. As these questions continued to run through my mind, I cannot describe in adequate words the peace I felt.  Complete, inexplicable, reassuring peace.  God was in this and He already knew what was wrong, why I was sick and how my life was about to change.

Over the course of ten days, God showed me so much.  He proved once again He is faithful.  He showed me the reality of my mortality and the truth that death is real.  God gave me a sense of urgency for living in the moment and loving unconditionally through the pain.  I spent time with some of the most incredible nurses in the world and was reminded of the blessing of family. I visited with doctors, nurses, infection control specialists, internists, you name the specialist, and I probably spoke to them in the course of my stay at the hospital.  Doctors from Omaha came to Kearney and visited with my internist trying to decide what was going on and why I was experiencing such rapid and significant illness.  The onset of symptoms erupted like the explosion of a shaken soda bottle.  One minute I was well and like the flip of a switch, here I was lying nearly lifeless in a hospital bed.  What was happening to my body?  I was 26 years old.  I was too young to get sick.  I was too healthy to be in ICU.  Right?

After finally discovering a blood infection and the complication of Influenza B, medication and a lot of it was to be the cure.  After one dose of several medications I was beginning to gain energy and after three days in ICU I was cleared to ''pass go'' and move up to PCU, (the progressive care unit).  I still remember sitting on the bed and smiling as they brought my food tray because I was hungry.  However, less than thirty minutes later, I was sick and had the strangest feeling like my legs were burning. Well, for anyone who has spent a significant amount of time confined to a hospital bed, you understand the fascinating and agonizing contraptions that are wrapped around your legs to guarantee proper circulation due to inactivity when one is bedridden.  Why on Earth did I suddenly feel like my legs were on fire.  After calling the nurse and upon observation of my legs, we (mostly the nurses) discovered I was having an allergic reaction to one of the medications.  I was having a reaction, which made my legs bright red as if I fell asleep in the August sunshine.    Back to the drawing board fellas...New medication was ordered and I spent the next twenty four hours hoping never to get near a fire or expose my bare legs to sunlight again, ever!  Eventually I began to feel like I might live and the doctors agreed!  People were allowed to come see me without dressing up in protective gear like we were all on an episode of Scrubs and I began to go stir crazy because I wanted to go home, sleep in my bed, have my kids climb on me and get back to my life.   After ten days in the hospital, I was given the green light to go home.  Back to my life...or so I thought.

My life is so different.  Some ways I would argue are worse.  Some I would undoubtedly agree are better.  It wasn't until May 2008 when I sat in the rheumatologist's office and received the diagnosis that would change my life forever.  Lupus.  What is that!?  Oh how much I have learned!  Life is such a journey.  And on the road of my life, this diagnosis has taken me through some winding mountain roads that I never expected to venture.  Nothing could have prepared me for the changes that would happen, for the changes that HAD to happen in order to venture through this new life, my new life.  Hand sanitizer and Lysol are now on the grocery list as often as milk and eggs.  Every illness I catch is an opportunity for me to choose faith or fear.  Each new ache is another question mark on the page of symptoms and signs of progression.  Will it take my life?  One day, yes it could.  But not today.  Today is a day I will live for the Lord.  I will make a difference for my Jesus.  I will fight for my family and I will sing for my Savior.  Five years ago, God smiled and exclaimed, "Be calm my child, I'm not finished with you yet." And as sure as I was that day, I am sure of it today.  I will live for my Lord and I will love for my Lord.  I will use the breath He puts in me to praise Him and I will use the days He gives me to proclaim His name.

I have Lupus.  Lupus don't have me.

For more information on what lupus is and how lupus affects those of us ''lupie'' survivors, search The Spoon Theory to learn more!