THANKSGIVING FOR TODAY

05-19-2017. THIS LUPUS PATIENT – MORE DETAIL OF MY STORY

May is Lupus Awareness Month.  This is my story.  I have always had the symptoms of Lupus all my life.  Around the 5th grade my legs stiffened up while I was riding my bicycle.  I lived in an apartment complex, Hollywood Village.  My dad would let us ride our bikes as long as we stayed within the complex.  I lived in Booker Court.  The courts were alphabetical from east to west.  I rode my bike to Freedom Court and could not pedal anymore.  I got off the bike and walked back to my dad's apartment.  He was so concerned about how upset I was - as usual crying like a baby.  OLD FOLKS:  He said I had heat exhaustion (of course he used another term I can't remember at this time).  He gave me a salt table and put some leaves on my head.  My dad was an herbalist long before I knew that word.  Later I learned that Lupus patients have a sensitivity to sun.  I always played outside - that was our sense of fun in the late 1960s and early 1970s.  When I complained of joint pain I was told I was experiencing growing pains - GROWING PAINS PEOPLE!  What is growing pains?  

In my teens, I developed what I thought was acne.  Along with joint pain, one of the first symptoms is a butterfly rash across the bridge of the nose.  It is in the shape of a wolf bite - hence Lupus.  

In my senior year of high school, we for the first time, had a girls track team.  I would run my laps and my legs hurts for bad.  They would swell.  But by the time I showed the coach the legs and knees were not swollen.  The coach said I had shin splits and taped my legs for each race.  But they hurt so much, I would not let the trainers massage my legs.  I just could not let anyone touch my legs.  Then my hands began to swell.  I found it hard to shake anyone's hands, but I did to be cordial.

After high school graduation, I left for college (Washington University-St, Louis, MO) in August.  Imagine going from Beaumont TX (relatively warm weather) to St, Louis MO (relatively cold weather).  My body was devastated.  I met so many people.  I loved the fact that the school had intramural sports.  We would watch the guys play tag football.  I was able to play on a girls basketball and volleyball team named Foxy Ladies.  I had so much fun.  Even through the pain, I enjoyed myself.  It kept my mind off being lonely from home and my imaginary (so they say) pain.  I finished my first semester and went home for the winter break.  I kept telling my parents how sick I am.  Of course, the term growing pains and lazy kept coming into the conversations.  I told my parents about the rash on my face and over my body.  My dad had the solution of putting me in a bathtub with water, epsom salt, alcohol and who knows what else.  Of course, I saw no change in the rash.  

After the break, I return to school in January.   There wasn't a girls' track team at that time so you had to compete on the boys team.  I was determined to make that team.   I was out running with a friend in Forest Park.  Before this time, every time I went to the Infirmary on campus my legs were not swollen anymore.  I really believe they thought I was a hypochondriac, upset by my ridiculously hard Chemical Engineering program.  I was sick and no one knew why.  I was out running with a friend in Forest Park.  My legs gave out.  I waved him on to keep running because I was about to cry like a baby.  Doesn't take much for me to cry.  But my legs were hurting so bad I had to give myself a good cry, sit and wait for the leg pains to ease up, before I returned to the Infirmary AGAIN.  But the friend did not continue to run.  He came back.  He was the first person to see my knees and legs twice its original size.  I was so embarrassed.  But relieved that I had a witness that I was not crazy and making things up.  I returned to the infirmary, with witness in tow.  I was prescribed 2 aspirin tablets, four times a day.  Unknow to me, I have an allergy to aspirin.  I ended up in the infirmary for a week.  Unable to keep any food down.  Then they served me milkshakes.  Unknown to me I had developed an allergy to milk. UGH!  I loved milk!  Just was not getting better.  I vomited multiple times every day.  My room in the infirmary was near the ice machine.  I could not sleep well for a week.

I was taken to the Barnes Hospital Complex after a week and literally dropped off by the campus police at approximately 9:00 a.m.  They were my ride only, I guess.  The escalator did not work.  I walked up those steps.  It was like an hour to me.  Kept thinking I would not make it.  But my resolve would not let me stop.  I reached the registration desk only to told I was a minor in Missouri, although an adult in Texas.   They said my mother would have to come and sign me into the hospital.  I called her crying like a big baby.  She left work, contacted a friend, and had him drive her 14 hours to the hospital.  I sat in the waiting area all that time thinking I would die in one of those chairs.  In the meantime, God stepped in.  The doctor on duty that evening was one of the best Rheumatologist in the country.  She realized I was a WashU student and could be admitted to the hospital by the Head of the school's infirmary.  She asked me to hold up my hands and not let her push them down.  I could not.  She saw the butterfly rash on my face and body.  I was immediately given a room in the experimental section of the complex.  That is when I was introduced to the miracle drug prednisone. 

My mom thought and prayed really hard to let them give me prednisone because of the side effects.  I could not even move my hands to wipe the tears from my face when my mom would go the guest form rooms to shower and change.  WashU was so gracious in assisting us.  Finally, I was given prednisone.  WOW!  WHAT A RELIEF IT IS!  As noted above, I gained a lot of weight, but my pain was dull.  That to me was a miracle!  My feet and hands hurt the most.  But still I carried on with my life.  My mom would take me to Galveston, Texas to a hospital every Friday.  THAT WAS AN ALL, DAY ORDEAL!  They would tell us to be there at 9 a.m.  Then at noon told to go to lunch.  After all our wait, I would be seen at about 5 p.m.  My mom would always have to take off work, with no pay, every Friday.  She did what she had to do to ensure I was getting the care I needed.  THANK YOU, JESUS!

To ensure I was able to get medical care I came back to college each year a week early to go into the research hospital.  I was given various medicines to try before they were cleared for general use (methotrexate, immuran, etc.).  At the start of my second year, I referred to the clinic on a lower floor.  I immediately had anxiety attacks.  I had been misdiagnosed so many times at clinics.  I went back to the doctor's office and asked them if I could clean up the office every night for medical care.  By the grace of God I was given professional courtesy and did not have to pay until I graduated from WashU.