My name is Marilyn, and I am 44 years old.   It all began after a hysterectomy.  I had a hysterectomy in November of 1986.  I went to orientations for new jobs, and each time they would say my urine had blood, protein, and some other stuff in it.  I was so weak also.  I thought it was because of my surgery, but it was about 10 months later.  I had a different test, and was told I shouldn't put all my symptoms together.  I was told by one doctor that joint pain has nothing to do with dry eyes.  

     In December of 1987, I was at work as a nurse at a developmental center for M. R. D. D.   I had gone to the hairdresser and while I was there I started  having abdominal pain, as if I was having severe gas pains without the gas.  I went to work anyway.  When I got there it felt as if someone had hit me in my right side.  I was rushed to a nearby hospital by paramedics.  They did an ultrasound in the ER, and said I had hydranephroses.  They said my kidney, bladder, and ureters were swollen.  My hemoglobin was 9.4 and  I had too much blood in my urine to count them.  So I was admitted to the hospital.

     The doctor asked me did I have Lupus, and I said of course not.   I did not know it at the time, but one doctor had tested me for Lupus, but never told me.  Well I had surgery to remove my so called kidney stone.  They said there was no stone, just inflammation.  After the procedure, I had severe chest pain, and was told I had cardiomegaley.

     Day after day my blood count would go down, and I would be feverish at night.  They did a kidney biopsy that caused a hemotoma on my kidney.  My temperature went to 102.8.  I stayed in the hospital about 3 months.  I even had a mylogram to see if I had a neurological disease.  

     One day in June my doctor came in my room and said your blood count is now too low.  He said he would send in a rheumatologist because he did not know why I was so sick.  The specialist did a schirmer test, lip biopsy, and other blood test, and told me I had Sjogren's.  I felt such a relief, just knowing what it was.  I was treated with Trillisate, and periodic injections of Kenelog.  I then developed an allergy to the Trillisate.  

     I began to have more problems, from Raynaud's to lung problems.  The doctor then said I had Lupus after looking at old test results from the first doctor in the ER.   I now see his partner, and I am on immunosupressive drugs, anti-malarial drug, anti-parkinson medication, stomach and muscle medication.  I take inhalers, and breathing treatments for my lungs.

     I am on medical leave from my job in home care, but I am not giving up.  I started my own gift business from home.  Right now, things are slow, but I have faith in God that they will pick up.  I see my doctor every 5 weeks, and I'm still in pain, but this disease is not who I am.  I am a writer, a nurse, a wife, and a mother of  three (two grown sons, and a 16 year old daughter) and a child of God.  I get depressed, constantly dry and itchy, but to coin a phrase from Mya Angelou "Still I rise".  Today is a day where the pain is almost unbearable, but because I get to tell my story, I can handle it.