chapter 7: here comes the sun

"here comes the sun. little darling"

"here comes the sun. and i say: it's alright...."

we had a great day at the air show. everyone was worn out; hot, sweaty and tired by the time we got home but it was a good day.  a fun day.

 

less than 24 hours later i knew something had changed.  the burning in my chest was constant, now combined with a  warmth in my throat.  a few of my smaller joints (wrists & fingers) along with my neck and shoulders were irritated and sore.  the pinkie finger on my left hand and the big toe on my left foot presented a slight red, bumpy rash.  by the following day there was a rosy, red rash on both hands, my neck, chest, trunk and lips.  the rash was not uncomfortable but it  was not attractive.  additionally i was experiencing heart palpitations and a rapid pulse rate.

it should also be noted here that i had called my original rheumatologist two times and left 2 separate messages.  i explained in my messages why i had called and expressed concern about some side affects from the medication he had prescribed.   no callback was ever received.  

finally on thursday, october 6 the rash now covered my face: nose & cheeks, ears, it was inside of my mouth and made it difficult to swallow food.  my lips and hands were dried, cracked and bleeding in some spots. the burning in my chest was constant and fierce.  i knew something was wrong and i was scared.  a 3rd and final phone message was left with my original doctor.  at the urging of my mother, i called the lupus doctor in los angeles.  i had not been seen by this doctor yet but had an appointment with him for the following day.   i was desperate and dialed his office number. his staff answered and immediately transferred me to his assistant.  when she answered,i could not believe it! i was talking to a real, live human being.  i explained to her what was happening and asked what they could recommend.

"legally, we are not supposed to give medical advice to someone over the phone who has not been examined by the doctor." the assistant explained.

"i understand." i sighed and hung my head.

"but... if you were our patient, we would suggest you take 60mg of prednisone, use cortisone cream sparingly and we'll see you at your appointment tomorrow afternoon."

a huge smile crept across my face. "got it. thank you SO much. see you tomorrow." i was grateful for their read-between-the-lines advice.  shoot, i was just happy to have someone in a doctor's office take my call.

i took the extra prednisone and applied the cortisone cream. los angeles, here i come. i had a good feeling about this. 

my husband - who was supposed to be my wing man for the la doctor's appointment fell ill. my mom graciously offered to come along with me.  it was nice to have her company; i knew she had been worrying about me.  i had hoped this long awaited appointment would give us both some peace of mind.  

my appointment was at noon and i was in an exam room at 12:05.  within 30 minutes the doctor had come in, talked with me, he had taken notes and examined me.  the staff had collected blood, urine, run an ekg on my heart and were sending me across the street for a chest x-ray.  i liked this "WOW" service!  
i smiled at my mom and she mouthed "i like this guy" back to me.  we definitely shared the same feeling.
the doctor entered the exam room one last time.
"amanda, this is what you are going to do." he began.
i sat up and immediately took note. he was speaking my language. i followed instructions. remember - i was a good soldier,so i was ready to take notes as he read me my orders.
"i want to see you next week when i will have the results from these tests back." the doctor continued.  "in the mean time you are going to take the medications you are on currently.  once i get the results back, we will probably modify your medications."
i can do that. no problem.  i had questions; i had a whole list of them.  but they could wait. he probably would not be able to answer most of them until he had my test results in his hand.

when my mom and i exited the office,staff met us at the front desk and gave us our appointment card for exactly one week later.  there were not any questions about whether or not i was available or if that time worked for me. honestly, it didn't work for me at all.  i had to clear a busy afternoon but i could have cared less.  this took priority.  i actually looked forward to my return visit.   even though we were leaving with questions unanswered, i felt good. i felt confident that i was in competent hands.