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.