Chapter 11: on again; off again

october 21,2011


 I remained in contact via email with both the dermatologist and my rheumatologist for several weeks. on the 21st of october i checked in with my rheumatologist to let him know my rash had completely cleared up, only some mild dry skin was left. the only thing that lingered was some moderate pain and swelling in my hands. the doctor suggested i taper off the prednisone gradually - at a rate of 2.5 mg per week and check back in with him in another 2 weeks. he wanted to see how my body would react to going off the steroid.  i could do that.  for the most part, i was feeling better physically. the rest of my body felt decent. not great but i was getting by alright. besides, i had a busy couple of months coming up. the holidays were approaching and my calendar was booking up. i decided to concentrate on that and hoped my body would cooperate.


fast forward to early november. i emailed my rheumatologist as directed. there was not any real change in my condition. i had aches and pains all over. somedays i felt better than others. i was finding ways to get around the pain. simple things like opening a jelly jar was torture for my hands. doing the dishes was difficult; often times I had no grip to hold heavy objects. my kids stepped up and helped me with a lot of things. they understood mommy didn't feel well and they knew they had to help me.  waves of guilt washed over me sometimes. was it bad that my kiddos had to help me? or was this a life lesson in compassion for them? i guess it depended on the day and how i was feeling as to how i might answer that question.


early in the morning on november 14 i made a quick trip to los angeles.  literally, i drove up there and walked into the office of my rheumatologist. ten minutes later i was finished and in the car, driving back home. they took my blood. took my $20 copay and that was it. this was the first time i started to question my sanity. is it worth all of this?  should I find a doctor closer to home?  no. i was doing the right thing. i think. 


a couple days later i received an email from the doctor. my labs looked good. there was no sign of inflammation. he advised me to begin tapering off the prednisone. take 10mg a day for 10 days then go down to 5mg a day for 5 days. on again; off again. whatever it took. i tried to remain positive. always putting on a smiley face.  my friend has a saying: "fake it 'til you make it."  it played in my head quite often; i wanted to tattoo it to my forehead.  when i meet up with friends and family, they looked at me differently now. "poor amanda" was written on their faces. i didn't want that. i didn't like that and i was determined to prove to them i could get through this. remember, i'm strong!  additionally, i was determined not to let this sickness define me. it was getting tough. i was trying desperately to hold it together. be the best mom i could be to my kids, be an attentive and loving wife. continue working my part-time job as a dispatcher.  scheduling photo shoots during the busiest time of the year. i really think part of me hoped that if i ignored the pain, it would simply go away. i was wrong. every day i woke up to the same feeling and the same pit in my stomach. it hurt to lift the covers off my body to get out of bed.  i knew it was going to be a tough day when i was unable to button my daughter's jeans.  my morning routine started off with a hot shower, some light stretching, a huge pot of coffee and medication down the hatch.  mentally i went into "f-ck it!" mode.  i didn't care what i ate or how much i ate.  food was my antidepressant and i liked it.  it tasted good.  


november 23 - i emailed my rheumatologist to update him. again, my biggest complaint was pain, swelling and tenderness in my hands and wrists. my doctor suggested i see an orthopedist.  i agreed. there was a doctor in orange that I had seen a couple years ago when i dealt with carpal tunnel. he was nice enough. he had helped me back then, maybe he could help me now. the mornings were the worst. i would wake up with stiff hands and swollen wrists. try getting up at 4am to go into work where I was expected to type for 12 hours. it was proving to be a challenge. i was ingesting up to 2400mg of advil just to try to take the edge off the pain. i knew this wasn't right. i also felt pressure to continue to work. my family needed me to contribute for financial reasons. i also felt a commitment to my employer and the other employees i work with.  they are in dire need for employees to help cover shifts.  everyone has a story, mine was no different.  i just sucked it up and pushed through.


december 12- i drove to orange for my orthopedist appointment. he was as friendly and helpful as i remember him being. he sat patiently and listened to my story as i brought him up to date. he concluded that my problem is systemic. 


"i'm sorry. there is not a surgery or anything i can do to fix you. since there are numerous joints affected, your problem is systemic and i believe we are dealing with an autoimmune problem here." he explained. "your body is telling us what we need to know without having to do blood work. your joints - especially your hands-  are visibly swollen. you need to go back on prednisone but i'm worried about your stomach." he continued "taking all these medications and 2400mg advil is going to blow a hole in your stomach. i need to give you something for that too."


"ok."I said. 


"i know you like your doctor in LA but i'd like you to find someone closer. i can give you some referrals." I got a little defensive when he mentioned this. i didn't want to find anyone closer. i like my doctor;  he is on my team but I tried to remember to keep an open mind.   i took the information, thanked him for his time then left his office.

i walked to my car, called my husband and broke down crying.  this sucked. i was hoping for different news from the orthopedist. i did not want to go back on the steroids. most of all i did not want to be in pain anymore. with everything going on i had abandoned my gluten-free diet and was eating like a pig.  i was also in too much pain for even moderate exercise. all of this contributed to my mood continuing a downward spiral. my husband talked me off the ledge and calmed me down. 


once calm and collected, i sat in the parking lot and dialed the 2 referral numbers the orthopedist had given me.  the first doctor did not accept my insurance.  the second one was not taking any new patients.  there was my answer.  i figured this was a sign that i needed to stick with my rheumatologist in los angeles.  


the first thing i did when i got home was email my rheumatologist and let him know what had happened.  he emailed me back immediately.  i love people who communicate.  he is a communicator.  another sign that i needed to stay with him.  

chapter 10: i think you've had a drug eruption

october 2011


we arrived at the dermatologist office in downtown beverly hills.  the building had an antiqued look to it but inside the doctor's office was completely the opposite.  the floors, walls and even some of the furniture were white marble.  very cool,crisp and clean.  my husband and i exchanged glances: "wow!" with our eye brows raised.  no wonder they didn't accept insurance; this was a cash-only establishment. of course it was, because everyone in beverly hills can pay cash for their dermatologist. right? 

not a great quality photo, but you get the idea ...

the staff was friendly.  the knew who i was and advised me the doctor was expecting me.  i couldn't help but notice a silly looking cardboard cutout of a man who i assumed was the dermatologist.  this matched the metallic sculpture of him hanging on the wall.  i hadn't even met the man and i knew i was going to like him.  there was no way he could take himself too seriously.


the nurse called me back to one of the exam rooms and my husband followed me. 


"the doctor will be right with you." she said and left us alone - but only for a short time. soon there was a loud, boisterous male voice on the other side of the door.


"well hello there! you must be amanda." his voice boomed and he walked in.  in front of me stood a short, older gentleman with silver hair and a matching mustache that stuck out 6 inches on either side of his mouth.  you could see it required a lot of goop to make it stand straight out like that.  his white lab coat was long sleeve and went down below his knees. to top it all off, he wore a magnifying glass headset with a lens visor and small light attached.  when the magnifying glasses were pulled down over his eyes, it looked as though he was staring at me through a pair of coke bottles.  i let out a little giggle and he smiled.  clearly, this was not the first time he'd had this same reaction.


i got right down to business. he was a doctor; a busy man who had "squeezed" me in so i did not want to waste his time.  i started reading off my notes and the doctor held his hand out.


"wait a minute. wait a minute.... I am the doctor.  YOU are the patient. It is MY job to rush YOU. Not the other way around."  i looked up at him and he had this sarcastic smirk on his face.  he turned to my husband "she does this at home, doesn't she?" my husband just started laughing and shook his head.


"sorry." i took a deep breath and relaxed as the dermatologist asked me one question at a time.  he listened carefully and made notes on a piece of paper.  he paid particular attention to the medications i had been taking and dates i listed when certain signs/symptoms showed up. 


all of the sudden he opened the door to the exam room. "nurse!" he voice boomed. "get me my drug book and the digital camera." he closed the door and was with us again.


"now don't ever look in this drug book.  it will scare you to death.  you won't even want to drink water from the fountain by the time you're done reading it."  he joked.  my husband sat in the corner and continued laughing.  the dermatologist looked up 2 of the drugs i had been taking since august. 
"you're on 2 sulfur drugs and you've just been to the airshow for an intense dose of sunlight.  i think you might be having a drug eruption."  he stated simply. "i don't think we need to biopsy the rash, i think we need to change your medications."


the door opened again. "nurse!" he called.  "get me danny on the phone."  it made me smile that he referred to my rheumatologist by his first name.  clearly they were friends and i liked that.  i wanted us all to be on the same page. 


a few seconds later the phone rang in our exam room.  the dermatologist put "danny" on speaker so we could hear what was said.  they both agreed that i might be having a severe allergic reaction from taking the 2 sulfur drugs combined with sunlight sensitivity.  they agreed that a biopsy did not need to be done at this time (thank goodness because i was NOT looking forward to that!)  they decided to alter my medications as well as put me on benadryl, give me topical cream for my face, a steroid spray for the rest of my body and call it a day. it sounded like a solid plan. i was happy to be off 2 of my 3 medications.  


"now i'd like to take a few photos of this rash. that way we can see how it progresses if/when you return for another visit."  the dermatologist fidgeted with a small 35mm digital camera.  "i hate these darn things. they never work quite right." he mumbled.   click-click.


"blurry." click-click.


"blurry." he frowned.  click-click.


"they're all blurry. damn thing.... NURSE!" he called out the door one last time. "i need a little help in here with this camera."  i couldn't help it anymore. i started laughing out loud. it was as if we were in a cartoon and he played the main character.  but i liked him.  i really liked him.  he knew what he was doing - except for the digital camera thing - and i trusted him.  that is what was important: i TRUSTED him.  at least he would get this rash figured out and make it go away.


"i've got something i'd like to ask you about." i said.


"shoot." he answered.


"my family is spending a week at the beach in carlsbad.  what kind of precaution do i need to take while i am there?" i asked.


"you, my dear" he began "are going to be the lady on the beach wearing 30 SPF, a very large brimmed hat and are going to be covered head to toe with clothing while sitting under an umbrella." he was so close to me now that the magnifying glasses made his eyes look enormous and his mustache practically poked my cheek.


"i can do that." i answered. i was just relieved that i'd still be able to go and have fun with my kids and family. 


"alright. it's been nice meeting you." he stuck out his little hand for a shake and smiled. "you take care of yourself and i will call you in a couple days to see how you are doing."


"great. thank you so much.  i look forward to hearing from you." i said and i meant it. secretly, i hoped this wouldn't be my last visit to his office.


the dermatologist called me a couple days after my visit just as he said he would.  he was pleased with my progress.   words cannot describe how reassuring it was to have a doctor follow up with me. it made me feel as though i mattered.  as though my "case" mattered to him.  i appreciated that so much and again, was confident that i had found not only 1 good doctor but 2.  the rheumatologist and dermatologist friends were on my team and that made me feel confident.


the following week my family and i went out of town to the beach and we had a wonderful time. the weather was cool and overcast - perfect for wearing long sleeves, pants and a large brimmed hat.  i took the allergy medication and used the spray and creams as instructed.  within a few days the rash had stopped spreading and began to clear up.  no longer did i have the intense burning from inside out.  this gave me some mental relief.  we had conquered the rash, now let's get on with the rest of this mess. i was confident we would get answers, i just didn't know when or how long it would take.  and remember, patience is something i am being challenged on.

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. 

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. 

chapter 6: another day, another dollar

one of my favorite sayings is: "another day, another dollar."  in this case, i was just happy to have another day.  a fresh start.  one that didn't include being sick to my stomach.  i decided the sickness was due to the new medicine, stress and probably a few other things.  i decided to alleviate as much stress as i could and take only the necessary medication. i refrained from taking the pain pills if i didn't need them.  this seemed to do the trick and i was no longer sick. thank goodness!

i also noticed my over-all body pain was diminishing.  i was sore in places, specifically the connective tissue areas and small joints in my wrists, ankles, toes and fingers.  but i was beginning to feel better.  the swelling had also gone down in my joints.  i continued with the clean diet, acupuncture once a week and yoga when i could fit it in. i found comfort in the fact that i was once again in charge of my own domain.  my kids were back on their usual routine: school, dance, hockey, nap time, etc.  it was me who was driving them around, bathing them, packing their lunches and putting them to bed. i felt good to be moving around again.  i wasn't 100%, but i was better.

we got into a new routine. got up in the morning, took my medications and started my day.  i worked an occasion shift here and there - maybe 15-20 hours a week. but my primary focus was on my health and my family.  it felt good.  i often times stopped to ask myself whether someone was trying to send me a message.  was this their way of telling me to slow down?  my yoga instructor once said "slow down, whatever you're racing to catch up with just might catch up with you."  so true. i laughed out loud when she said that in class and shook my head.  she was so right.


something i noticed right away was the way my body felt being on these new medications.  within a week of taking the plaquenil i began to notice a burning sensation in my chest.  it would appear in the late afternoons.  almost like i was smoking a cigarette and the smoldering, heated carcinogenic smoke filled the top of my lungs.  it burned and it scared me a little bit.  

there was the insomnia.  prednisone is a stimulant.  with 2 young children at home, i woke up (or was woken up) early - around 6am, sometimes earlier.  halfway through the day i would be physically exhausted.  this is also where i learned what fatigue was all about.  when my 2 year old napped, i tried to enjoy a little shut eye along with her.  if i got a nap in the afternoon i found myself wide awake that night -usually until 4am.  then up again with my littles at 6am. wheww! that was tough. thank god for some good coffee. my colleague often joked about how much stuff she used to get done when she was on prednisone.  the rest of her family would be tucked in their beds and she would be working furiously.  i was beginning to understand what she meant.  the late night/ early morning hours was when i started blogging and editing my photos.  at least this was comforting to me; at least i had an outlet; something positive to focus on.  


i watched the calendar like a hawk; noting each day what was happening and symptoms i was experiencing.  i could not drink enough water.  it was like i was a camel.  the more i drank, the more the flames were stoked in my chest.  my eyes, nose and mouth began to dry over up.  chap stick and eye drops were a must and i never, ever left the house without a very large bottle of water - which was refilled often. my thirst was unquenchable.  at least my kidneys were getting their workout.  again, i was enjoying the freedom of having my mobility back and willing to put up the other stuff.




on october 2nd i was feeling good. my whole family decided to go to the miramar air show down in san diego.  this was a big deal for my family.  my father is retired navy, 20+ years and my youngest brother is currently a staff sergeant in the marine corps.  we are a military family and proud of it. my family - my mom and dad in particular - were a little worried about our planned outing, but i  was excited.  i felt confident that it would be fine; we would have a good time and most of all everyone would be together as a family.  these are the things i treasured most.  additionally we had ordered reserved seating and tickets ahead of time. what was the worst that could happen?  if i got tired, there were reserved seats waiting for me.  if we really had to, we could simply pack up the car and drive home but this was an outing i did not want to miss.  


the morning was beautiful; the sun was out early and it was getting warm.  the family passed around sunscreen for everyone to use and most of us sat underneath umbrellas to keep the sun off of us.  
while walking into the air show my husband turned and said: "well i guess we're going to test your photo sensitivity today."  it took me a minute to understand what he meant.
i looked at him.  "yeah, i guess so."  i said and shrugged my shoulders.  
photo sensitivity or "abnormal" light sensitivity is a factor with lupus.  i was about to get educated on this.

chapter 5: high hopes

well the days dragged by. i tried to remain positive whenever people would ask me about my doctor's appointment and what was going on.  i figured if i acted positive and put positive thoughts out there, positive is what was going to come back to me.  right?  i had high hopes.


finally september 13th rolled around and my husband and i headed back to my rheumatologist for my follow up appointment.  i had done just what the doctor ordered: i had taken the medication and gone to get my blood work. i had also made a list of questions.  in my head, i secretly suspected he was going to tell me i had rheumatoid arthritis and was going to have to learn to live with it.  in my head, i also assumed this was going to be the easier of the two options. for some reason lupus carried a much more heavier load for me.


we dropped the kids off with grandma again (thank you,grandma!) and arrived early for my 1:30pm appointment.  this time, the doctor was practicing out of his own office in upland - near san antonio hospital.  while sitting in the waiting room i looked around at the other patients who were waiting.  it was obvious i was the youngest person in there by about 30+ years.  it was also evident that the office had more important things to do rather than make sure they were running an efficient business.  we listened to staff exchange shopping stories, watched them finish eating their lunch and even got to see a pair of red vinyl high heels the receptionist purchased that very afternoon.  tacky.  i believe in signs and this was not adding up to be a good sign.  still: think positive. think positive.


45 minutes later, we were finally called back to one of the examining rooms. the doctor came in shortly after and had a perplexed look on his face.
"hmm..." he says while looking at me. he was holding some paperwork in his hand. then he walked over and began to examine my arms, neck and legs.
"no rash?" he asked.
"no."  i answer.
"well, your test results are inconclusive so i am going to diagnose you as borderline lupus."


what? what is border line lupus?  my husband and i exchanged a confused look.


"even though you are presenting symptoms for rheumatoid arthritis, the blood work shows negative.  you are only showing 3 markers for lupus. so i'm going to give you some medication that will take care of both." he explained. "i am going to put you on a low dose of prednisone and paquenil to help with the inflammation in your joints."


"wait a second. i have some concerns about these medications. i've done some reading and prednisone will eat away at my bones over time and paquenil can damage the retinas in my eyes." i questioned.
"almost never happens. you don't need to worry about that." he assured me.  "take these medications and you will feel better."


i had more questions for this doctor.  think positive. think positive.


"what about sjogrens syndrome? was i tested for that?" i asked him.


"uhhh..... no, i don't see it here in your paperwork so i will need you to go back to the lab and have more blood drawn." he fumbled through the chart in his hand.


"ok. what about diet and nutrition? and exercise? - i've recently tried yoga. is there anything else i can be doing to better my situation and supplement the medications your prescribing?" i asked.


the doctor was getting irritated.  "just eat healthy." he said.  "i don't believe in yoga. i can write you a prescription for physical therapy and take the medications. you will feel better."


i could feel a lump beginning to form in my throat. there was no way i was going to allow this doctor to see me get upset. i swallowed it down hard and looked at my husband.  his face said it all.  he was getting frustrated with this guy too.


"why should she take those medications if their side effects are going to be as bad or worse than the disease?" my husband interjected.


"i am just trying to give your wife some relief." the doctor explained. "take the medications and i will see you in 4 weeks." that was it. he was finished. it was time for us to leave.


i walked out of the office feeling frustrated, like none of my questions had been answered.  i felt like i had such high hopes 2 hours before and now i was at a loss for words.  ask anyone, i can usually talk until the paint comes off the walls but i sat in the passenger seat in silence.


"are you ok?" he asked , rubbing my shoulders.  it wasn't a question. he knew i wasn't ok. he knew i was upset.  "do you want to know what i think?" he paused briefly and i looked at him.  "i think we need to go to LA and get a second opinion."


i shook my head yes in agreement.


"you know what else i think" he continued.  "i think that doctor is used to having elderly patients come in to his office. he tells them what pills to take for their aches and pains and they do it. no questions asked.  you come in today, young and full of questions and he didn't know what to do."


i shook my head yes again. what he was saying made sense. all of it.


we drove in silence to the pharmacy.  the good patient in me was going to get my medications filled and take them as instructed.  i stared out the window with that lump still sitting in my throat. it was too much.  the tears came. i couldn't stop them. they poured out.  the frustration, the anger, the disbelief. the fear. it all came to a head.


i sat in the car and composed myself while my husband went into the pharmacy.  screw this, i thought. i am in control of what happens to me.  i dialed the rheumatology office phone number and made a call.  i requested the receptionist (red vinyl shoe girl) make me a copy of my full chart and told her i would be back down in 10 minutes to pick it up. 


the second call i made was to my coworker who has been battling lupus for 20 years.  she gave me the name and phone number for her lupus doctor in los angeles.  i phoned him and made an appointment.  he could see me october 7th; i didn't care that it was 3 weeks away.  i would take whatever i could get.  (of course, i asked his assistant to phone me if any earlier appointments came available.)  i was comforted to find an email waiting for me when i arrived home later from the lupus doctor in los angeles.  the email was a confirmation of my appointment. attached were some patient forms for me fill out and take to the office.  this email made me even more confident in my decision to get a second opinion.  i was already feeling like the lupus doctor in los angeles at least had better communication skills than the previous rheumatologist i had seen.  i took the second dose of my new medications and headed to bed; i was mentally and emotionally exhausted after a long day.


2 am and my eyes shot open.  oh no! i threw the covers off the bed and ran to the bathroom, i barely made it in time before i got sick.  i kept getting sick. over and over again until finally - around 6am - there was nothing left in my system to purge.


 -- on a side note, my husband works a position where he is on call 24 hours a day. unfortunately for him (and me) he got an emergency call and had to leave to go into work at 4am.  the look on his face was dreadful.  he did not want to go and leave me home alone, sick with 2 young children sleeping in their beds. but he also couldn't not go when he was called.


"i'll be fine." i assured him.  already in my head i was planning on who i could call to help.  thank goodness family lives close by and i've got some amazing girlfriends.  a couple phone calls later, my son had a ride to school, my daughter had a play date with her bestie and i had a quiet, child-free house.
i fell back into bed and slept - HARD. like one of those sleeps where a mack truck could have run through the room and i would never have heard it.  


i woke up around noon and felt like a new woman.  after a hot shower, it was time to collect my children.  that was easier said, than done with concerned girlfriends wanting to keep them all day.  in all honesty, i just wanted to be with my people and they wanted to be with me.  kids are funny.  they sense when things are off.  my kids, in particular, have become even more loving and are very worried about mommy.  they walk up and give me kisses and ask: "does that make you feel better, mommy?"  my 2 year old daughter walks up and will tell anyone who is listening: "my mommy doesn't feel good."  my children know mommy is sick but they do not know all of the details of it.  yet, they respond in such a loving way.  i miss them when i'm not around them - even if it's just for a short time.  every day i am reminded how amazing my children are.  my son helps me with things and does things around the house that not many other 5 years have had to do.  he must tell me 1,000 times a day that he loves me.  he stops playing video games (this is huge, people!), puts down the remote and walks over to rub my arm or give me a hug.  that is pretty incredible.  these are the things that continue to keep my hopes and my spirits high.

chapter 4: i craved "normal"

alright! enough dilly-dallying!! i need to get to it and catch up on my blog posts.  so much has been happening that things are changing and progressing daily.  whether you've been along for the ride or are just joining us, fasten your seat belt and hang on!  i am about the press the virtual accelerator.

august 19th finally arrived and my husband and i headed to what would be my first rheumatology appointment.  after dropping the kids off at my mom's house we headed into the doctor's office.  it wasn't exactly an office.  it was a few extra rooms stuck onto the back of a physical therapy gym.  but i didn't care. i was just happy to be there.  we waited a few minutes then were called back by the nurse.  the first thing she did was weigh me.  12 pounds lighter than i was at the beginning just by eating clean and stretching with light yoga.  that was incredible to me!  i couldn't believe it.  a huge smile crept across my face and i looked at my husband with my mouth open wide.  

"well, that was definitely worth it!" i said to him.  a secret part of me was jumping for joy because i finally had lost enough weight that i weighed less than my skinny man.  for some of you, this is not an issue. for me, it always has been.  

with that good news under my belt, i was ready to see the rheumatologist.  he was an older gentleman with a gentle demeanor.  of course i had 100 questions written down and began firing them off at him.

he put his hands up at me. "wait wait wait." he says.  "let's run some more tests and i will do a physical exam on you."

"okay." i say.  i realize i can be quite the over-eager beaver. i was in his house, so to speak so i needed to do things his way. after all, he was the expert. 

after a quick physical exam - no gown needed, just kept the clothing on. he check to see how much of a grip i had in each hand and examined the rest of my body for any kind of lupus rash. he found minimal strength in my hands and no rash.  he noted some minor swelling in the hands, fingers, wrist, ankles and toes.

"well," he begins.  "you are presenting symptoms for both rheumatoid arthritis and lupus. you are only showing 3 signs of lupus and i won't officially diagnose you with lupus until you exhibit a 4th marker." (ie: the rash) "so i am going to give you a 7-pack of methylprednisone to take along with your celebrex and tramadol."  this will help alleviate some of the inflammation in your joints.  then i will need you to have another blood test done to see how your body has reacted to this medication."

no problem. i can do that. give me instructions and i will be a good soldier. i follow orders when given.

"come back and see me in 3 weeks." and that was it. he did not have a reason why i was sick.  but i felt a little better having somewhat of a direction to go in.

my husband drove to the pharmacy to fill my new medication as i was very anxious to begin taking them. now, don't get me wrong. i had (still have) concerns about taking prednisone and some of the side affects of that medication but at this point in my journey, i just wanted some relief.  

well i got it.  within hours of taking my first dose of methylprednisone, i felt a difference. this was good.  this was really good. kinda of scary good because i was beginning to feel almost normal. and it was happening so quickly.  a small part of me questioned how long this would last and what was really going on inside of my body. but most of me just appreciated the break from the pain.  i understand very clearly why drug addicts crave that high. i craved feeling normal. 

the first day i took 7 pills, the second day i took 6 pills, third day it was 5 pills and so on and so forth until the pills were gone and the week was up.  being the dutiful student, i went to the lab and had my blood work completed.  then waited for my follow up appointment.  unfortunately, around day 5 i started to feel the "normalcy"fading away.  like an addict, i became paranoid.  oh no! what can i do to keep this high; to continue feeling normal?   i had to talk myself down off the ledge several times. it's okay.  it's only temporary. the doctor can give me more if i need it. i tried to concentrate on my clean diet, yoga, acupuncture, etc. 

in the meantime i had begun to feel well enough to return to my part-time job.  thankfully, they are very flexible with my hours and allowed me to start my shift later than usual or only work a partial shift if i was having a rough time.  i am forever grateful for my supervisors and coworkers' patience and understanding with this.  it also helped that one of the ladies i work with has had lupus for over 20 years.  she has been a wealth of knowledge and a comfort to me throughout this ordeal. 

i worked a couple of shifts, only about 6 hours at a time.  i enjoyed the break and the change of scenery; i was tired of staring at the walls of my own home.  i also relished the social interaction with my coworkers and the public.  again, this helped me feel "normal."  but it also kicked my butt.  i was so dog-tired by the time i left work that i would drive home with drool dripping off my bottom lip.  it was all i could do to get home, unfold out of the drivers seat and get into bed.  the day after my shift was the worst. it would hit me like a ton of bricks and i would be fatigued to the bone.  this was not me; amanda was used to going and doing 100 things at one time and not batting an eye.  clearly that wasn't the case anymore.  i learned quickly to clear my calendar and simplify my family's schedule.

with one week to go before my follow up appointment at the rheumatologist office, i could not stand it anymore.  the pain was back - full force.  the inflammation had increased and i was frustrated.  after a couple un-returned phone calls to the rheumatology office i decided to take drastic measures.  i became a stalker.  i called every hour, on the hour from the time the office opened until the time they closed until someone would speak to me.  

"please, is there anything you can do for me?" i begged the doctor's assistant. " i was feeling so good on the metylprednisone and now i feel worse. i still have one week to go before i come back in to see you."  

the doctor agreed to have his assistant call in a refill for the 7-pack of the methylprednisone to my local pharmacy for pickup. 

"thank you SO much!"  the relief swept over me and i made sure i was waiting at the pharmacy pick up window an hour later. 

this time, the "high" was not as dramatic. i felt a difference when i began taking the medication again. but not as strong as the first time.  DAMN!  that's ok, i told myself.  at least it made you feel a little better. it did.  i was able to fulfill my obligations for the weekend with my photographer/friend and work a couple of shifts at my part-time job.  it got me through and i for that, i was thankful. 

Hitting the Wall : Chapter 2

monday came and i hit the wall.  as i struggled to get my limbs to respond to what my brain was telling them to do the pain washed over me.  i got scared.  very scared.  this isn't right.  this does not feel right.  something is wrong with my body.  all of my body.  there was not one joint that had been spared from this intense pain. 

my husband sprang into action.  "in sickness and in health," - boy, they weren't kidding.  he had to physically help me out of bed.  help me to the bathroom. get me into the shower.  wash me, dry me and dress me in my clothes.  every movement made my body scream. 

right away my children were aware something was wrong with mommy.  "you don't feel good?" my daughter asked looking up at me.  my son softly kissed me and rubbed my arm.  "does that make you feel better?"  he asked.  i felt my heart break in two when i recognized the worry on their sweet little faces. they should not be worrying about me. i am the mom.  it is my job to worry about them.  

thankfully we have amazing neighbors and our kids went to stay across the street.  my husband drove me straight back to my doctor's office and we waited until the front doors were unlocked.  no appointment. no warning.  we just showed up.  his staff was visibly surprised to see me back; it had only been a few days since i was there last.  the doctor even gave me a funny look when he walked into the exam room and saw me sitting there again.  i tried hard to hold back the tears but they came anyway while i explained to the doctor why i had returned.  

"it's like she turned 90 years old over night" my husband told him in disbelief. 

my general practitioner talked a little more about the results of what would be my first blood test.  he advised me the diabetic reading was high.  "now, i'm not saying you are a diabetic but i don't want you to have problems with that in the future.  so let's do some preventative maintenance right now by loosing 5-10 pounds.  even i could afford to do that." he chuckled.  not funny, mister doctor. i am not in the mood for humor.

he continued: "you need to drink lots of water. your kidneys look like they are having some trouble and i want to make sure we are flushing them out real good.  your liver too."

so.... you want me to loose weight, drink 3 gallons of water a day and i'll feel better? 

i could tell the doctor was still a little skeptical until he saw me try to get down off the exam table.  my husband wrapped his arm around my waist and lowered me onto the ground.  he continued to support my weight as we made our way toward the door.  the problem with this connective tissue disease is that ALL of the tissues that connect every flexing joint in your body hurt like an s.o.b.  

the doctor's eyes grew wide and his mouth opened.  

"do you always walk like that?  you didn't look like this last week." he stammered.

"that is what i've been trying to tell you." i cried.  "this isn't me. my body is not doing what i tell it to do." i sounded like a toddler whining to him.

my doctor referred us to a rheumatologist.  you see, i was under the impression that a rheumatologist studied rheumatoid arthritis.  yes and no.  i had tested positive for a connective tissue disease.  there are several diseases within this connective tissue disease family.  rheumatoid arthritis and lupus are only some of them. my doctor ordered additional blood tests to investigate the connective tissue disease, gave me a prescription for tramadol (a pain medication) and encouraged me to go home and rest.  

there was no going home yet. we had things to do.  first call was to the rheumatologist for an appointment.  the first office did not have an available appointment for over 2 months.  that's not going to work.  the next doctor we called had an available appointment, but of course it would be several weeks before he would be able to see me. "i'll take it."  then i vowed to call his office every day to see if an earlier appointment became available.  yes, i can be very annoying like that.

next stop: the lab for more blood work. 

"hello again" the technician said when i shuffled in. since i had turned 90 years old overnight, it's not like i was moving very fast.  "more tests?" he asked.

i used to be afraid of needles.  we didn't get along - needles and i. but today was different. 

i was scared of what was happening to my body and i was determined to find out what was causing this craziness and get it fixed.

after the lab we hit the pharmacy for those pain meds. yes, give me pills.  if they make me feel better, give them to me now. while my husband went in to the pharmacy and took care of business, i sat in the car.  what else could i be doing to better my situation? i can't just sit here and wait around for something to happen.  i knew i could only control certain aspects of my situation.  one of them was my diet.  "loose 5-10 pounds" played over in my mind.  ugh.... but he kind of had a point.  if i ate healthy; if i ate "clean" my body might operate more efficiently and therefore be able to heal itself better. right? 

another light bulb went on: acupuncture.  hmm? i had never done acupuncture before.  remember what i said about me and needles?  yeah, well this time things are different.  i would have set my hair on fire and run down the street if it meant i would get some relief from the pain.

i called my chiropractor's office and promptly made an acupuncture appointment for later that afternoon.  scared, sore, anxious and in pain i shuffled into the chiropractic office.  once again, the office staff and patients in the waiting room turned to look at the 90 year old shuffling through the door.  i was quickly escorted to a private room and my consultation began.  

"i don't know what's going on with you, but i am very worried. are you nervous?" she asked.

"yes. very." i filled her in on all of the events leading up to me coming to see her.  she diligently took notes and nodded appropriately. i also presented her with a copy of my first blood test.  she read them thoroughly and shook her head.  

"it looks like your body basically exploded and you have inflammation everywhere." 

i asked her if she could recommend any type of nutrition or dietary restrictions for me.  she encouraged a cleanse diet - not to loose weight, but more to rid my body of all the processed foods and ick that might be deterring it from performing its normal duties. (kidneys? liver?? are you listening this?)  ok, i can do that.  another vow for the day: eat fresh fruit and vegetables, lean meats and plenty of protein. stay away from crap. 

for the next two hours i laid on the bed in that private room.  the lights were dim.  soft, soothing music played in the background and i realized as she stuck needles into my body that i was finally pain free.  could it really be? or am i hallucinating?  no, it was really happening.  occasionally i would feel a pinch when she put a needle in place but the sensation quickly went away.  i felt at peace. most of all, i felt like she was listening to me and hearing what my body was saying.

my first acupuncture treatment was strictly to help manage my pain.  when she finished the 2 hour treatment, she encouraged me to go home and take an epsom salt bath then get some rest.  i did just that.  while relaxing i was hit with the reality that i needed to ask for help.  this might not be a big deal for some people, but it was a huge deal for me.  i prided myself on being fiercely independent and now i was going to have to swallow my pride.   i stared at the fact i would not be able to care for myself and my 2 kids when my husband went off to work early the next morning.  i picked up the phone and dialed a number.

my husband had to assist me with walking out of the chiropractic  office, getting into the car and moving up the stairs.  but when the time came to go to bed i felt a little better. i had some slight relief.  the day's events had drained me - mentally, physically and emotionally.  i was hopeful the next day would be even better.  or maybe i was just naive that i would wake up and be magically cured.  oh to be so lucky...

Going From 100 mph To a Dead Stop

a recent personal struggle has reared its ugly head and i thought i would share.  i figured maybe writing about my experience would be a form of therapy for me. additionally, i am learning that there are a lot of people going through the same thing and maybe we could learn from and help each other.

on july 14 i woke up and started my morning like i always do - sort of.  when i moved to get out of bed it was obvious something was wrong with my hands.  my fingers had swelled up and i had a difficult time removing my wedding ring.  i also had difficulty making a fist.  my first inclination was to wonder:  am i going to start my period? crap, i hope not.  then i began reviewing the previous day's meals.  did i eat too much salt? or drown myself in sodium?  

no, not that i could recall.  at the time, i decided i needed to exercise like i usually did.  i told myself i needed to get moving and i would feel better.  that was partially true.  i even commented to my girlfriend while working out that my hands were sore.  she had the same questions i did.  strange.  

for another 2 weeks, i awoke with similar symptoms.  i always felt worse in the morning and would gradually start to feel better as they day progressed.  the swelling and pain had started to affect more than my hands.  my right shoulder was sore.  my big toe, both ankles, and pads of my feet ached and had become  painful to the touch.  i had stopped exercising. i no longer jogged up to 5 miles - 4 days a week.  enough of this; i could only suck it up for so long and frankly, i was tired of the pain.  i decided to go see my doctor. besides, i had a softball tournament in las vegas coming up and i was not going to miss out on that!

thankfully, a girlfriend agreed to watch my 2 little people and i headed to my first doctor's appointment on august 1st.  my joints were still painfully sore when i went in to the see my general practitioner but i figured he would be a good place to start. the doctor checked the usual: my blood pressure (it was higher than usual), my pulse, my weight (ugh) , ears, eyes, etc and took a brief look at the joints that bothered me.  after a deep inquisition into my family history, he really had no idea what was happening.  there were so many symptoms that he needed to narrow down the playing field, so to speak.   according to him, i could have been experiencing anything from lyme disease to rheumatoid arthritis.  he prescribed celebrex to help with the inflammation, an oral antibiotic "just in case" i tested positive for lyme disease and sent me to the lab for numerous blood tests.

four days later i was on my way to las vegas with my girlfriends. honestly, i had hesitated to go on the trip. my husband and i talked about it.  i also spoke with the coach who was a close friend.  we decided i would go and have a fun trip with my friends but play only as needed and when i felt good enough to do so.  that is exactly what i did.  additionally, i made sure to make healthy food choices while i was away.   on day two of my trip my general practitioner called with my blood work results.  he normally did not give this type of information over the phone but he knew i was out of town and anxious for some information.  he advised me to stop taking the antibiotics because i had tested negative for lyme disease.  {wheww!}  he was, however concerned about a positive abnormality showing up on one of the blood tests.  i clearly remember him telling me: "now, don't freak out.  i do not want you to worry about this but a small percentage of people who test positive eventually get diagnosed with lupus." 

there it was. the bomb in my gut hit hard and heavy.  then a little voice in my head started repeating: "you are going to be fine. you are always fine. there are plenty of tests that come back with a false-positive. this is no big deal." 

my friends and i made the 4 hour drive home from las vegas on sunday, august 7.  i knew when we stopped halfway through the trip that i was in trouble.  my joints had stiffened even more.  i had difficulty getting in and out of the car.  once i arrived home, i was relieved to be with my husband and children.  i could try to relax and do my best to rest before having to go to work early the following morning.  or so i thought... the next morning proved to be the next chapter in my newest challenge.