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.