Popping Pills, Crunching Cucumbers

   For almost two years now, my son has known that Mommy’s legs have boo-boos.  He knows Mommy has to call the doctor.  He knows Mommy goes to the doctor.  He knows that sometimes Mommy comes home from the doctor feeling tired, with a big band-aid on her arm.  And, as the years go by, he has seen the number of prescription bottles grow.  Mommy has many medicines to take.

   It’s a part of our life.  I try not to make it the forefront of our life, but it’s there.  And the other night during dinner, Ryan showed me just how much he’s aware of my medical condition.

   Ryan was eating cucumber salad, bite-size pieces of cucumber he was picking up with his fingers.  Ryan took a bite, then reached for a sip of his milk.  He told me he had to take his medicine.  Like Mommy.  He did this several times.  A bite of cucumber, a swallow of milk to wash it down.

   Innocently enough, my son had me in tears.

   Things could be worse.  I know that.  I am able to drive, to pick up my son (most days).  I can dance (somewhat).  I can do a floor-size puzzle and play a game of tickle and squish.

   But, things could be so much better.  I can’t take Ryan for walks like I used to do.  I can’t get up easily after completing our floor-size puzzle.  And I never know when a bout of pain will hit, leaving me writhing and crying in agony.

   I used to look at my life as B.R. and A.R.  Before Ryan and After Ryan.  I still do.  But there’s a new equation to add to the mix.

   B.J. and A.J.  Before July 2010 and After July 2010.  That’s when this medical journey began.  That’s when the fates made sure I knew I was vulnerable. 

   It’s a continuous journey, trying to live with an autoimmune disease that is still not under control.  

   And while I’m struggling with the pain and the uncertainty, I’ve got my son to remind me that we’re in it together - cucumber salad medicine and all.

  

Wintering

           Wintering is a time of waiting.  Waiting to see what survives;  what will thrive from what’s been left behind.  Wintering is a time for discovering the beauty that exists in the quiet, in what remains.  

   I think much of my teenage years and early adult years were spent in a period of waiting.  Working and studying, and waiting for the time when I could do what I really wanted to do.  And, it doesn’t always feel like much has changed.

   The older I get though, the more I seem to question things, question myself, and question my choices.  And instead of taking action, I wait to see how things will play out.  I’m not quite sure that’s such a good thing.  I fear that all my wintering will strip me of who I am, and I’ll lose sight of what I really want.  

   I wait for relationships to heal, for a phone call to end the silence that has stretched between my brother and I for over ten years.  I wait for my sister and I to regain the closeness we shared as little girls who called each other “Best Friends.” 

   I wait to feel pleasure again in my career.  Teaching used to be fun and exhausting, exhilarating and demanding.  And I loved it.  I don’t anymore.  I can’t teach grammar, long division, and California history in the midst of chaos caused by thirty-plus children who need lessons in respect and compassion, manners and tolerance.  

  Sometimes my life feels like a test.  How much can I handle and how well can I handle it?  The answer remains to be seen, and sometimes I feel more up for the challenge than others.

   The pink flowering blooms are blown off a tree on a neighbor’s front yard, but the strong trunk remains.  That tree is grounded, it’s got a solid foundation, and I know I do too.  I’ve got to wait it out.  Take stock of what it is I can change, what I can’t change and will accept as is, and what I can no longer tolerate.

   Winter can be a time of great desolation, sadness, and loneliness.  And that’s okay.  

   But, there’s a flip side.  Wintering is also a time of renewal; a chance to hibernate and recharge.  A chance for me to take stock of my life, to inventory of what I want to keep, what I want to change, and what I need to let go.

   Things I waited for haven’t turned out the way I thought they would.  Teaching was supposed to be the career I’d retire from.  Now, I worry how I’ll make it to June.   My siblings were supposed to be my constant source of comfort not pain.

   In the quiet of this wintering stage, I can pause and reflect on the many blessings that do fill my life (a ten-year-plus friendship with a former co-worker), the happy surprises (discovering my favorite local-vacation spot along California’s central coast), the evolution of my life (I’m a mother).  

   And, life will go on.  Seasons will change.  Bits of me will too.   

The A to Z List of My Disease

   In July 2010, my left calf was sore and hard for two days.  On day three I woke up with my left calf extremely swollen and unable to bear weight.  I was hospitalized for four days, and since then, my legs haven’t been right.  I have been on a quest for a diagnosis and a treatment plan.  Here, is my odyssey, the A to Z List of My Disease.

A Autoimmune.  Meaning my body is attacking itself.  No rhyme or reason behind it, my body has turned on itself.  I suffer from an autoimmune disease.  

B Biopsy.  January 2011, I underwent a muscle biopsy in my upper-left-calf that I now think may have left me worse than I was before the procedure.  Doctors were sure that by examining a piece of the muscle, they would clearly be able to solve the mystery of my ailment.  (They were wrong).  

C CAT Scan.  Another way doctors have of trying to look inside my body, decipher the symptoms, and offer a diagnosis.

D Discoloration.  Those are the bruises that remain on my arms after nurses have acted like vampires during my monthly blood tests.

E Experts.  For almost two years, I have been on an odyssey, telling my story to doctor after doctor, one expert after another.  When one doctor can’t figure out my condition, I’m referred to another, most times needing to repeat my same story, explain my symptoms, undergo some of the same tests.  I’ve seen a geneticist, a neurologist, a rheumatologist, an ophthalmologist, a neuromuscular specialist, and a vascular surgeon.

F Frustration - at what I can no longer do, at my limitations, my weakness, my constant pain, my continuous search for answers.

G Gratitude.  For as awful as this condition is, I am grateful.  Grateful that nothing life-threatening has been diagnosed.  Grateful that most days I can walk and drive myself.

H Heart Test.   That’s what I called the EKG, the electrocardiogram, one of the least-painful tests I’ve experienced.  One more test, one more possible answer, and one more “Nope, it’s not that.”

I Invisible injury.  Others can’t see it - I have no cast or outward sign of an ailment, save for occasional limping.  I work, care for my son, go about my daily routines as best I can, trying to mask my daily discomfort.

J Justice (or lack of).  Bad things happen to good people sometimes.  Life isn’t always fair.  And I have to leave it at that.

K Kinesiology.  The human body is miraculous - with all its strengths and weaknesses.  

L Lab Work.  That’s what they call it in the doctor’s office; I call it blood tests.  It hurts, makes my arm sore, leaves a bruise, and often times leaves me nauseous afterwards.    

M MRI (Magnetic Resonance Imaging).  From a science point of view, I can look at that machine and see it as a marvel.  From a personal point of view, I look at the machine in a panic.  I do not handle well the idea of my body being “put” into this extremely loud tube-like machine affording barely enough room for my arms to fit.  A sedative did nothing to relax me and disguise the feeling that this machine is reminiscent of a coffin.

N Never.  Never say never.  Never did I fear problems with my legs.  (I always worried about breast cancer).  Never did I think my first night away from my son would be spent in a hospital room.

O Ophthalmologist.  On my quest to find out what was wrong with my legs, I was referred to an ophthalmologist.  Apparently, certain cancers first make themselves known by appearing in eye exams.  (Who knew?)  My eyes were fine.

P Prescriptions.  As of last count, I’m up to seven pills, daily.  Another prescription is taken once a week - 4 little pills that are supposedly so potent they only require a weekly dosage.  I constantly monitor the clock and my meals.  Some prescriptions are taken with a full stomach, some on an empty stomach.

Q Questions.  During these two years, I have more questions than I have answers for.  “Will this condition get worse?”  (Don’t know).  “Will it spread to other parts of my body?”  (For a while, I had symptoms in my arm, fingers, and toes.  My medication has helped those areas, but we don’t know).

R Referrals.  Before I can see a doctor, I need a referral.  A referral that can take weeks to process, making me wait before I can even call a doctor and make an appointment.  So, part of the reason I believe this whole process has taken so long is because I have spent considerable time waiting for “necessary” paperwork.

S Side effects.  For every pill, there’s a side effect.  And no matter how “tough” I try to be, how much I try to ignore them (I don’t read the side effect labels on my prescriptions), some of them are impossible to ignore, namely my nightly wake-ups due to night sweats and my upset stomach.  

T Terror.  I’ve heard possible diagnoses ranging from cancer to rheumatoid arthritis to blocked arteries to leukemia.  All results have proven negative.  But it’s the waiting for the results that produces full-on, crying, howling terror.  My number one thought, “I’ve got a young son.”

U Ultrasound.  When I was pregnant, I loved my ultrasound 

appointments - it was an opportunity to see my growing baby.  Now, each ultrasound appointment I attend with trepidation.  I don’t want to hear bad news, but I do want news, I want answers, I want a resolution.

V Veins (and arteries).  They’re not blocked, and although I do have some varicose veins, they aren’t enough to be causing my pain.  Yet, you can look at my left leg and know that something isn’t right.  My legs look like a map of a busy interstate - red and blue and purple trails criss-crossing my skin.

W Walker.  I was released from the hospital in July 2010 dependent on a walker and wheelchair to get around.  After my biopsy, the walker came out of the closet.  It’s folded and hidden back in the closet, and I hope it remains there.

X X-rays.  One of the first ways doctors try to determine what’s going on inside my body.  No broken bones, no clear evidence showing the cause of my underlying problem.

Y Yearn.  I yearn to be “me” again.  The person who didn’t have a multitude of prescription bottles on my countertop.  The person who could go for long walks with my son.  The person who could enjoy a shower or a bath (the hot water often makes my pain worse).  The person who felt young and healthy and wasn’t worried about the “What if...”

Z Zap.  In yet another test, my left leg and back were subjected to a series of zaps and shocks in one more attempt to discover if my condition was more muscular in nature.  

The A to Z List of Occupations that Interest Me

   I’m a public school teacher.  And as much as I may fantasize about it, I’m not quitting my job anytime soon.  But that doesn’t stop me from imagining myself in another occupation - some real, some imagined.  

A Astronaut.  It was my first career goal.  And there’s still a part of me that wonders if I would have been able to do it.  If I hadn’t gotten scared, hadn’t decided to stay local, would I have gone after my dream?  Would I have achieved it?  And what must it be like to leave the confines of gravity and see our planet in a way few others have?

B Bookmobile Driver.  I’d be “book lady.”  I’d drive and bring books to people who want them.  I’d be able to get books into the hands of those who didn’t have a library nearby.  

C Caterer (with a twist).  My husband tells me that his lunches are often the envy of his co-workers.  His lunches are often just left-overs from dinners I’ve made the night before.  So, I could start a niche side-business, catering to employees who desire simple, home-cooked lunches at reasonable prices.

D Decorator, specifically classrooms.  Each summer, I go back to a barren classroom and convert it to a room that is colorful and welcome and engaging for students.  Not all teachers have classrooms that show any sort of decoration (or effort).  That’s where I’d come in.  I’d design a cozy library corner.  An attractive bulletin board with a fun border.  

E Event planner.  I am inspired by Franck Eggelhoffer, the wedding-coordinator in Steve Martin’s Father of the Bride.  I am an organized, detailed person.  I could coordinate a florist, a caterer, a photographer and the multitude of others who help to create a glorious wedding.  And without tooting my own horn too much, I’m sure I could be just as effective for any special occasion.

F Florist.  For approximately four years, I worked in a flower shop, an over-priced flower shop with a boss that was utterly a mean person.  But the flower part I enjoyed.  It’s an honor to help create flowers for someone’s wedding, someone’s prom, someone’s family dinner.  Working with flowers, there’s daily beauty and elegance. 

G Grocery shopper.  I could be a personal shopper for others.  I’m a good grocery shopper.  I shop with coupons and the weekly sale paper.  I load up my cart each week, with necessities and extras, all the way saving a multitude of money.  For those who don’t have the inclination or who don’t feel the thrill of a good deal, I’m their gal.

H Handwriter - as in, one who does handwriting.  Since I was in elementary school, I have been told that I have neat handwriting.  What if I could use those skills to make some money and work at home?  Addressing envelopes, gift tags, place cards.

I Instructor.  (And yes, there’s a difference between my 

current public-school teacher job).  As a teacher, I attempt to maintain my students’ focus and attention.  An instructor teaches students who voluntarily enroll for his/her courses.  These are paying adults who want to be in a particular class.  You automatically are working with a different audience.  You teach differently; more effectively, certainly more efficiently.

J Journalist.  I imagine myself a journalist, working on my contribution to create a newsworthy, comprehensible, intelligible publication.

K Keyboarder.  Typing can put me in a zen-like state.  I don’t have to be fully present and on-alert the way I do when I’m teaching.  More and more, I believe my state of mind would greatly benefit from a job that was still productive while not being as emotionally, and physically, draining as my current teaching career.  

L Librarian.  I am a book lover.  How peaceful I imagine my days to be surrounded by books, assisting others in locating a book or information.  A place where yelling and running isn’t allowed.  A place that is a sanctuary.

M Marine biologist.  I know it doesn’t fit with my life now, but there is a part of me that is intrigued by the prospect of observing whales in their natural habitats.  Surveying and studying these graceful giants.

N NASA educational representative.  Working within NASA’s educational offices would allow me to marry two of my passions - teaching children and space exploration.  

O Outfit Coordinator.  Nothing fancy; I don’t want to dress anyone for a red carpet.  I’m talking about putting together cute outfits for children (I enjoy selecting my son’s clothes) or matching a shirt with a pair of earrings and complimentary necklace.  (I am a person who changes my jewelry daily to match my outfit).

P Proofreader.  I’m good at finding typos; a trait I inherited from my mom.  At school, I’m often asked to proofread a letter before hundreds of copies are made and distributed to our students.  What if I got paid for that?  I could work from home, and set my own hours.

Q Quintessential Me.  Whatever I’m doing on a particular day - whether more mom, more teacher, more housekeeper, I need to be the best version of “me.”  Sometimes it’s so easy to lose sight of the things that make me a better me (sleep, down-time).  

R Reader.  I’d love to be the person who reads aloud to children each week at the local book store.  As a college student, I was a reading volunteer in a Los Angeles classroom.  I love reading aloud to my students.  And as a parent, I become frustrated at the lack of enthusiasm some readers demonstrate when they read aloud to a bookstore audience, including my son and I.  (First off, the book should be held open and facing your listeners!)

S Stay-at-home mom.  Before I became a mother, I never knew if I’d really want to be a stay-at-home mom.  It wasn’t easy getting my college degree, acquiring my teaching position.  Did I want to give it up?  Did I want to define myself solely as someone’s mother?  Now, as the mother of a toddler, the answer is “yes.”  My job as mother is completely more fulfilling and more rewarding than that of public school teacher.  But, finances dictate both my husband and I work.  

T Tutor.  Sometimes I think being a tutor would better satisfy the need I have to teach children, interact with children, and make a difference in a child’s life.  So much of my day is spent doing non-teaching-related tasks (being mediator, therapist, nurse) for my students.  A tutor can focus on a small group of students (versus my 32).  

U University student.  I feel like I missed so much during my college years.  For me, it was purely a means to an end.  I wanted to be a teacher; I needed a college degree.  College was a challenging time of riding public buses, working part-time, getting married, maintaining “A’s.”  I didn’t enjoy it.  I’d love to go back and take classes for the pleasure of learning.  

V Visual Merchandiser.  I think I was first intrigued back in 1987 with the Andrew McCarthy film Mannequin.  I imagine a land of make-believe, creating window displays and floor plans that entice browsers and shoppers. 

W Writer.   I’ll admit it - I fantasize that someone, somewhere will read my blog and “discover” me.  They’ll realize I should be writing everyday, or at least every week, and getting paid for it.  I will not just be a writer - but a paid writer.

X Movie Extra.  I have no interest in being an actress.  But, speaking as someone who has never worked as an extra, I am intrigued by the idea of being a part of the background - a guest at a wedding, a woman sitting at a nearby table in the restaurant, one in a crowd at an athletic event.

Y Yes-woman.  As in, “Yes, I’m happy with the way I spend the majority of my day.”  “Yes, I find fulfillment in my career.”  “Yes, I feel appreciated.”  “Yes, I feel my efforts are worth my time.”  Currently, I cannot truthfully speak those statements.  Maybe one day.

Z Zoo writer.  One who writes for the zoo.  Writes the blog, updating the world on the adventures of a new panda.  One who writes brochures.  One who writes information for child-friendly websites.