Monday, November 7, 2011

chapter 9: you might be a leper if....

the weekend came and i felt confident.  i was feeling pretty good, physically - better than a couple months ago- i was just tired.  exhausted, actually but i had to push through.  i had things to do. places to go and people to see.  most importantly, my family.  my son had turned 5 and we had family coming over for dinner to celebrate.  i also had a couple of photo shoots scheduled that i was excited about.  lots to look forward to and no time to feel "ick."

the rash progressed.  it became a fiery hot mess. every time i stepped outside i could literally feel myself burning.  it felt like i was burning from the inside out.  i would have to step into the shade if i was out in the sunlight.  it didn't matter if the temperature was up or not; my internal thermometer was on a constant BOIL.  this made outdoor activities very uncomfortable.  the weather was still quite warm but i came to the conclusion that i would have to cover up: jeans, long sleeve (light weight/ breath-able cotton) shirts,with socks and closed-toe shoes. 

the rash began on my hands and feet - specifically my knuckles and between my toes.  it also covered my torso, back and face. it showed up in red welts -almost like someone had laid a piece of red lace over my white skin and you could see through it.  i felt like a leper.  it was spreading and by monday of that week was beginning to itch.
again, i called my lupus doctor in los angeles who recommended increasing my prednisone and using a benadryl cream on the itchy sections of the rash.  what they didn't understand, or maybe i didn't convey well enough was that my ENTIRE body itched.  from the inside-out.

by mid-week my pulse raced sporadically and my heart  pounded in my chest.  occasionally i had to stop what i was  doing,  close my eyes and take a deep breath - in through the nose and out through the mouth.  just like in yoga.  while breathing slowly, i counted to ten and brought my heart rate back down. 
this cannot be right.  what is going on? i wondered. only 2 more days until i returned to see my lupus doctor.  i had also begun a diary of-sorts.  i had printed up a calendar to make notes on each day as i experienced different symptoms.  this would make it easier for me to give my doctor specifics about my condition.

my skin had began to peel - in the places where it had been red and welty before.  [gross alert!] i could feel the rash on the inside of my mouth.  along the inside of my top lip, the skin was raw as it scraped against my teeth. my neck looked like a fiery, red lizard.  it was scaly. boy, did it itch. i restrained from digging my fingernails into that fresh skin and grading it up.

october 14th - the day of my follow up appointment with the lupus doctor in los angeles.  once again, grandma was gracious enough to take care of our kiddos.  my hubby and i made the trek in to los angeles. 
we arrived early for my appointment and were immediately called into the doctor's office.
"have a seat and the doctor will be right in." said his assistant, motioning to the 2 chairs facing a large desk.
my husband and i each took a seat.  we exchanged glances.  i raised my eyebrows to him as if to ask: "i wonder what's going on?"  and he shrugged his shoulders as if to answer:"i don't know."
a few minutes later the doctor walked in.
"hello, amanda." he said walking over to sit down but before i could answer he continued "i am perplexed."
"perplexed?" i asked.
"i am perplexed by you."  once again my husband and i exchanged glances (him:huh?/ me:i dunno)
"okay.....?" i questioned.
"all of your tests have returned negative.  your EKG looks great.  your chest x-ray was clear and your blood work is negative."  he explained. "i do not want to diagnose you as having lupus because it could create problems for you down the road.  problems with life insurance, mortgage insurance etc."
oh gosh...  i became worried. i hadn't even thought about that! i panicked slightly but kept listening to what he was saying.  the whole time he talked, i scribbled notes on a piece of paper and he stared at me.  well kind of... he was staring at my chest.  any other time, i would've stopped him and told him to look me in the eyes while talking to me. this time was different.
"let me see you hands."  he said. i stretched my arms across his desk."if i were to diagnose you simply by looking at you, i would tell you that you have lupus.  clearly there is an autoimmune problem going on here."  and he motioned at my hands, neck and chest.  he sat quietly for a moment looking at me.  not really looking at me, but thinking about what to do with me.
"i want a dermatologist to biopsy that rash you have." i shuttered at those words. it sounded like it would be painful and i have always associated the word "biopsy" with cancer.
" if i can get you an appointment with a dermatologist today, are you able to go see him?"
"yes." both my husband and i nodded our heads.
the doctor got up and left the office.  ten minutes later he returned with the name, address and driving directions to his dermatologist.
he handed me the paperwork.  "here's the information. he said he can see you in 20 minutes."
just like that, we were off to beverly hills. the office was barely 4 miles away but it took us all 20 minutes to get over there with the crazy traffic.  there was some good people watching along the way.  los angeles - especially beverly hills - is awesome reality tv.  i tried not to be self conscious about not wearing make up.  normally i put my face on when i go out,but i had wanted the doctor to be able to see the rash clearly for my appointment.  now looking at all these beautiful, plastic people around me i wished i had at least put on some mascara.  i reached into my purse for some lip gloss.  that would make me feel better. 

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