Monday, January 16, 2012

danielle: a strength you didn't know you had

sometimes life throws you a curve ball and you find yourself in a situation you never thought you would be in.  you are forced to dig deep and find a strength you might not have known was there.

my friend danielle is traveling down a road she never imagined being on.  her strength and courageous spirit inspire me.  she digs deep and continues to move forward because of 2 very special reasons: 

reason #1

reason #2

i can only imagine how many times you might have heard the saying: "when life gives you lemons, make lemonade."  i can also imagine there are some days you would like to have those lemons with tequila and salt.  that is part of the cycle, i suppose.  

this image tells a story

my friend,  i admire your tenacious spirit. you have endured a truly difficult experience.  you are independent.  you are beautiful.  these last few months have been challenging but you have dug down and found a strength deep inside.  you will get through this.  continue to be the woman your boys can be proud of. 

typical brothers...  i love how this picture captures the big brother vs little brother

these boys love their mama <3

danielle, you are an amazing mother to your boys. they think you hung the moon.  i enjoyed our afternoon together and had such a great time with all 3 of you.  i look forward to  hanging out with  you again very soon. xox, aj

Wednesday, January 4, 2012

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.  

Tuesday, January 3, 2012

a mother's love

a mother's love.

this mother is tough. 
this mother is strong. 
this mother has a huge soft spot for her two kiddos.
how could she not?  they adore her.  (as they should.)  and she lives for them.

watching this woman with her children was incredible.  spending an afternoon with them was FUN!
i felt their connection - deep in my core.  
it made me want to be a part of their little club.
i found this poem and it reminded me of you, holly:

a mother's love:

a mother's love is something
that no one can explain,
it is made of deep devotion
and of sacrifice and pain,
it is endless and unselfish
and enduring come what may
for nothing can destroy it
or take that love away...
it is patient and forgiving
when all others are forsaking,
and it never fails or falters
even though the heart is breaking...
it believes beyond believing
when the world around condemns
and it glows with all the beauty
of the rarest, brightest gems...
it is far beyond defining,
it defies all explanation,
and it still remains a secret
like the mysteries of creation...
a many splendored miracle
man cannot understand
and another wondrous evidence
of God's tender guiding hand.

photo taken by Dina Conover

photo taken by Dina Conover

i loved being a part of your three-some for an afternoon. 
i can't help but smile every time i see you since our time together and a hug is always required. (even you, liam!)
they have burrowed a special place in my heart.  i laughed so hard with them; belly laughed so hard that i almost peed my pants a couple of times.
my good friend, dina conover and her daughter allie-cat were with us for this comedy hour.  you can see some of dina's handy work above.
i didn't want our time together to end.  can we do it again soon? (bailey is probably nodding her head "yes" & holly is rolling her eyes at me- she hates having her picture taken)


holly, bailey & liam - thank you for letting me capture these moments with you.  i enjoyed every minute and look forward to when we can laugh together again.  i will never look atthe mcdonald's mcrib sandwich the same way.  nor will i be able to go back to this spot for a shoot and not stop to remember what an incredible honor it was to be with you that day.  
i love what we captured and i smile every time i look at your images.  i hope you do, too.  
lots of love to you, xox amanda jane

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.