Sunday, October 30, 2011

teper family: there is more than one way to create a family

there is more than one way to create a family.  adoption is one of the ways families are created.   adoption is the legal process that allows someone to become a parent of a child,even though they may not related by blood.  in reality, adoption is much,much more.

opening your heart and your home to a child is one of the most generous things anyone could ever do.  the teper family is hoping for the opportunity.  they are on the bumpy and often emotional roller coaster ride known as adoption.  they are opening themselves and their family up and hoping for a chance to expand their crew. 

being a parent is a self-less career.  parenting (good parenting) requires your full attention, full-time.  the demand of children can be all-consuming, but SO worth it.  being a parent is also one of the most amazing privileges you commit to.  as a parent you witness small miracles every day.

marisa told me about their decision to adopt.  she told me her family has to assemble a profile and package for prospective parents to look at.  the package needs to tell their story and express why they want to adopt a child.  pictures should be included in their packet.  we set a date, got her man and her son together at the park and shot some pictures.  

my wish is for the teper family to be selected for an adoption - soon.  my wish is for the prospective parent to see what a loving and warm environment their baby could be raised in.  these 3 have a strong bond and would be delighted to make their crew a family of 4.   
dave works hard to provide a good life for his family.  marisa is a full-time, hands-on mom who helps coach her son's baseball team.  cameron is a quiet boy, incredibly intelligent and kind.  he will be a terrific big brother. any child will be blessed to grow up in their home and be protected by their hearts. good luck to all of you this journey. xox aj

Friday, October 28, 2011

my boy turned 5

5 years old!

my boy turned 5 at the beginning of the month.  where has the time gone?  when he was a baby - and he was my first -  i used to sit and watch him all day.  my husband would come home from work and ask how my day was/ what did i do?  my answer: "i sat and stared at our son."  watching him was the best reality tv show there was.  and it still is.

his personality is interesting.  i love seeing how he is growing, changing and finding himself.  his journey is starting out in this big world and he has a long road ahead.  i pray that his father and i are teaching him the right tools, giving him enough strength and offering the love he needs to grow into a good man.  
this boy has traits and characteristics from both my husband and i. i am a little biased, but i think he is quite handsome. :)  he is smart. he is sweet. he is sensitive. he loves his mama and is a good big brother to his little sister.  don't get me wrong, they fight and bicker like the best of them, but that is part of the game when you have siblings.  that is WHY you have siblings, right?  to learn how to deal with people.  he is learning to deal - every day.  

doing his homework. he loves to do homework.  fingers crossed that doesn't change. 

nico and his cousin playing their video games. notice he cannot tear his eyes away from the screen even to have a quick photo taken.
in our house, birthdays are special.  they are special because of who and what we are celebrating.  my goal as a mother is to make sure my kiddos know i love them and am here to support them.  i use their birthdays as a way to show them how grateful we are for the day that they were born.
my husband believes it's important to show each other how special they are every day of the year - not just one day.  my husband and i also feel strongly that it is easy for children  to get a warped sense of what a birthday party is all about.  too often these days it is about the presents and material possessions.   like when i was growing up, we have an every-other-year rule in our home.  we do not host a huge party each time one of us celebrates a birthday.   last year was my son's turn to have a party and he invited a handful of his friends over for an afternoon of fun and games.  this  year he did not have huge, over-the-top celebration.  
we took cupcakes to school for his classmates and made little goodie bags with some treats for them.  he got to wear a birthday crown at school and be the line-leader (hey, that's a big deal at preschool.)

uncle brian enjoying some homemade pizza  - YUMMY!
we also invited our immediate family over for a fun night of homemade pizza making and wii video games.  my son was in heaven.  he was surrounded by those who love him and he got to play his favorite video game.  what more could a 5 year old want -right?  this also gave the rest of our family a chance to have an evening together.  that is always a good thing.
make a wish!

nico, i wish you a very happy birthday.  i hope you enjoyed your day and know that everyone who was here to celebrate with us loves you very much.  i am proud of you and what an amazing young man you are turning into.  
happy birthday, son.  i love you!! xoxo

Tuesday, October 25, 2011

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. 

Monday, October 24, 2011

oak glen: raspberry picking at the apple farm

yes, we went raspberry picking at an apple farm in oak glen.  my littles were confused too, but we had fun any way.  my girlfriend and i loaded up our kiddos and made the drive out to yucaipa.  they were all excited and couldn't wait for this new adventure.  
i love this time of year when the chapter of summer is coming to a close and fall starts to creep in. i can almost smell the change in the air and feel it in my bones.  fall is one of my favorites seasons; halloween is a holiday i love to have lots be creative with.

oak glen is about an hour east of where we live.  whenever i go there, it feels like i am in another state.  i love it.
there is a cluster of farms that harvest fruit, vegetables and all kinds of tasty treats throughout the year.on weekends some of the farms host special events and activities that are perfect for families.   our kiddos were looking forward to doing some apple picking in early october. 

it was a warm afternoon.  we packed a lunch, some snacks and headed out. we figured the apple trees would provide plenty of shade for while we were picking.  what we did not plan on was the farms were running low on apples.  in fact, when we arrived we learned that we were not able to do any apple picking.  mother nature had not been cooperative with their crops this season.  the farms were only allowing apple picking on the weekends and we were visiting in the middle of the week.  
the look on the kid's faces was sad.  my girlfriend and i exchanged worried looks.  i could read her expression and it said: "did we really drive all the way out here NOT to pick apples?"
"mom, i want to pick some apples." my little girl whined.
the nice man at snow line orchard quickly came up with a back-up plan for us. 
"you can pick some raspberries." he quickly offered up. 
"raspberries?" i asked. i looked at my girlfriend with a relieved smile.  whew!
we gathered up some baskets and the nice man from the orchard pointed us toward the raspberry bushes that lined the property. 

we only spent a short time collecting raspberries.  in fact the raspberries were eaten faster than they were collected.  but who cares? it was all in good fun and the kids were loving it. 
we munched on our lunch at the picnic tables, under the big shady trees - the kids were full on fresh berries so it was a matter of us two moms trying to stuff food in our faces. 

we used this opportunity to snap some thematic fall pics of our own little people.  notice my friend: crouching tiger, hidden mamarazzi.  she is an amazing wing-man; i always have so much fun when i am with her and her family.  my kiddos love her kiddos.  they have an ease about their relationship much like their mom and i do.  

 we took full advantage of the beautiful weather and inspiring location.  we had a great day! i look forward to going back for another visit - soon.

Friday, October 21, 2011

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.

Friday, October 14, 2011

Ghesquiere: sounds like "Guess Choir"

ghesquiere family : sounds like "guess choir"

that's how you say it.  don't try to sound it out. if you're like me, you would have never been able to say it correctly. thank goodness karrie gave me this hint "guess choir."  
this family is gorgeous. aren't they?  and they were SO fun. so comfortable and willing to let me click away while they goofed around and did their thing.  we met at galleano winery in mira loma and spent a wonderful afternoon together.  my faithful wing man, sandra was with me and helped to entertain the girls when they were tired of having their pictures taken.  before they got "tired", they were downright amazing.  look at some of these...

beautiful jayden loves her daddy
i love these hearty laughs from these silly girls!

payton - they call her "pj"

this family's faith is solid.  their love for each other runs deep.  it is palpable when you are with them. 
the girls are good. well behaved and so polite.  but there's something more.  they are warm and loving.  
just look at their little faces. jayden's eyes mesmerize me.  it's like she is looking at my soul sometimes.  and payton's cute little face.  i want to eat it up.  
these girls are cute now and are going to be BE-AUTIFUL!  why shouldn't they be?!? just check out their parents...

love their smiles

i was fortunate enough to meet karrie and her girls at my daughter's dance class.  i knew right away i was going to like karrie.  her personality was similar to mine and so was her parenting style.  we exchanged phone numbers and started meeting up for play dates with our kiddos.  these are how friendships happen and i am so glad our friendship happened.  
karrie, pat and girls,  thank you for rounding up your troops and meeting us at the galleano winery for a great afternoon.  it has been truly a pleasure meeting all of you. 
sandra, once again - thanks for being the wind beneath my wings and helping me.  I cherish your love and support.  xoxo amanda jane

Thursday, October 13, 2011

Life is a Beach: Kerr Family

Life is a Beach: Kerr Family

for this beautiful family, life really is a beach.  they love the sand. they love the water.  they love the sun.  they love their family time at the ocean. i love them and i loved hanging out with them at the beach.

kim and i met at work several years ago and became fast friends.  we worked in the same division, had the same interests and i was immediately drawn to kim's friendly disposition.  she was so mellow and easy-going.  i loved being around her positive energy.  

i love this one. <3

we had to time this just right between the waves 
a few years ago, kim and her hubby decided to expand their family.  along came DJ.  he is a handsome boy, isn't he?  DJ and my kiddos like to play together. i love that DJ and my kiddos are buddies and get along so well.  it gives Kim and i even more of a reason to get together.  
so handsome!
this boy dreams of being a fireman one day, just like his daddy
kim, i really appreciate you giving me the opportunity to photograph your beautiful family.  I had a great time with you all at the beach.  i appreciate that you were one of the first people to jump on my band wagon and support this new adventure of mine.  thank you, my friend.  i love you girl.
xoxo amanda jane

Wednesday, October 12, 2011

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.

Monday, October 10, 2011

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. 

Wednesday, October 5, 2011

My Dandelion Philosophy

how many of us have picked up a dandelion and blown the dried seeds?  once the seeds have turned from their bright yellow color to the white/grey wisps, with one big breath we can send their seeds out into the air. (seeds are often carried as far as 5 miles from their origin!)  this can be a beautiful sight.  i think it’s magical.  
many people blow these seeds hoping for a wish to come true, just like they would blow out a candle on their birthday cake.  i have always believed that my wish would come true if i was lucky enough to successfully empty off all the dandelion seeds in one breath.  if i failed to do so, i might not have as much luck with my wish coming true.
with each seed that is blown into the air, it eventually lands somewhere and begins to grow another dandelion plant.  this is how the dandelions procreate; without their flowers turning into seeds and blowing to another location, they would not continue to grow.  
i relate this to life; i relate this theory to my life.  i look at my own journey as a dandelion seed that has blown in, planted its roots in someone’s nice lawn and i’ve started to grow into a bright and beautiful yellow flower.  some of my neighbors may view me as a weed, and that’s ok because even weeds can be a beautiful plant in the right kind of environment.  as a dandelion, i live out my days in a tight, safe bud then slowly open in the warm sunshine.  a dandelion opens to greet the morning and closes up tight to sleep at night.  dandelions flower in the winter when everything else is cold and dead.  dandelions have one of the longest flowering seasons of any plant.  as i age, my seeds turn from a bold yellow to a willowy, grey flower.  with a strong wind or big breath, my seeds will blow away.  then land somewhere else to start all over again.  my seeds, in the literal sense are my children and my family.  they are my legacy.  but my seeds could also be other relationships i have, my job, hobbies, even every day interactions with passersby - good and bad.  my seeds could be an impression i’ve made after meeting someone for the first and only time. (i hope it was a good impression-fingers crossed.)  most recently, i like to think of my passion for photography as a seed.  i hope the pictures i’ve taken for friends plant the seed and touch them deeply.  each moment in our little lives go by so quickly, it’s impossible to stop time.  i feel like photographing my children, my family and my friends help me hold onto that moment. instead of watching it slip away, i can always go back to that moment and revisit it.  each memory is a seed blowing into the next yard to plant another flower. i like to think all of my seeds are going to be flowers.  beautiful flowers that your gardener won’t ever want to rid your lawn of.  
dandelions are rich in symbolism.  their ability to thrive under adverse conditions make me think of persistence and survival.   the ability to regenerate from our roots is a gift i intend to pass along to my children and foster in our family's home.  the seeds' journey once it's left the safety of the yellow flower symbolizes letting go and starting something new.  i can relate to all of these on many levels.  i think we all can.

With each springs white top.
Shaken off by hands unseen.
Wanders by each lofty lonely face.
Places it is wind it needs to show.
I float across each leaf, it's breath.
Beside still waters shy and still.
Willows branch they hang in grace.
With a gentle sigh they hold out light,
and lay me gently down to grow.
                             ~author unknown