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.