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.

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...