Here I was excelling in medical school, living my dream, planning my first trip to Africa and having no idea if I would be physically able to continue in a few months, years. I finally found the courage to get x-rays, a kind rheumatology fellow who I frankly owe my sanity to paged me and went over the films with me gently. He talked me into a steroid shot in which a the radiologist furthered my anxiety with talk of strange anatomy and bone density.  I made an appointment with the hip surgeon who I had met several years earlier and wrung my hands as I studied for Step 2, started my residency essays. The visit upset me even though I knew what was coming and gave me the strange transition of me explaining to my anxious mother what the doctors were saying. He gave me another steroid shot that was amazingly effective and I lived with denial for a summer, went to Romania and pretended that everything was ok. Perfected my residency essay, then my peds AI hit me like a freight train and my denial started to crumble.  My first patient died of pneumonia related to muscular dystrophy in an all night vigil of wailing parents and I was reminded of my sweet Romanian friend whose similar death had rocked my world in college.  Our parallel diseases differed in two major ways, there was a palliative yet potentially close to curative treatment for the symptoms of mine and even when I had no cartilage left…I wouldn’t die.  Visions of a beloved elderly patient with RA who had movement in her hands, was going blind and couldn’t get out of bed flashed through my brain…could I live with that reality?  Visions of the synthetic hip failing because of my bone density and knowing that once we took my femoral head they was no going back, if the prosthesis failed, I wouldn’t walk again.  After the on call vigil, I drove home to the mountains then onward to get a steroid shot.

Within in weeks, I could no longer deny it, the shot failed. I wasn’t sleeping now because of the pain.  It was everything I could do to keep the facade that I was just another medical student. I called my surgeon’s PA and cried in the child psych copy room and told her I wanted to do the surgery now.  (yes I had a nervous break down on the pysch floor…fun yes). Things fell into place, the surgeon fit me in (I am sure he was shaking his head thinking finally I was ready a year ago, this girl is nuts).  I passed Step 2, got my first residency interview and with tachycardia to the 120s, lectured my anesthesiologist on the decreased number of DVTs with spinals opposed to general as they rolled me into the OR.

I was a neurotic post-operative patient but I went back to medical school three weeks later, line danced at 5 weeks, interviewed for residency at 6 weeks, Kenya at 16 weeks  and by the time match day came I was taking the steps two at a time for the first time in my life.

I went through a similar period of denial and anxiety although much milder, fought to get steroid shots in Cincy( Part II, Part III). Epic fail, telling my  chief resident was near to the copy room incident. This time the PA tried to comfort me that even though there was a boat load of hardware in the hip, they would figure it out and I would be ok. I nearly lost my insurance coverage, took the Step 3 and then spoke in DC the week before.  By the time I got to the OR I found myself in a much better place than the previous time, believing that somehow the hip would work despite the hardware weakened bone and that I would walk out of this better than ever.  I found myself telling everyone (yay versed) my bucket list of things I wanted to do with two shiny hips (I remember this prior to heavier sedation but apparently I kept right on going although I don’t remember it). I woke up to the news that miracles of miracles the hardware had not prevented them from using the best kind of hip as expected and I had a 30 year lease at minimal. I was texting everyone I knew in the PACU and thanking everyone from the jainator to God for my incredible good fortune.  My family and I survived me with five weeks of unplanned toe touch weight bearing while the hardware holes healed despite a funeral, a mild incision infection and general angst on the part of a sibling.

And I find myself at 5 weeks post op sitting in an exam room across the hall from where this all began three years ago with the visit (see above). The PA comes in and asks me when I am going back to Africa?  She hands me the films with a grin. There they are, healing perfectly. Her optimism is infectious and suddenly as I remember how fragile it all seemed three years ago.I think back though to my first pediatric death and of my sweet friend Laura who died of a similar diseases (dying muscles and connective tissue…I have dying cartilage and connective tissue) and how in some strange way of the disability tribe I feel I owe them, they expect me not to waste this, to live with reckless abandon.

I am overcome by gratitude this time sans versed.  Nearly in tears.  The attending comes in  says my name, kisses my cheek and says “You’re Done!”  He grabs his cell and proceeds to call my pediatric ortho to tell him the good news. (yay for transition..although it was kind of a weird move)  He draws me my “life plan”  which includes one more visit at 6 months, then no more visits for 2 years.   It doesn’t seem real. No more hip pain, no more hip precautions, an inch taller (much to my sister’s dismay) I can throw away my crutches, 6 weeks of PT and then welcome to the rest of my life.

Mom and I drive back down the familiar spine of our beloved mountains, a little giddy despite the recent family sorrow, amazed at marvels of modern medicine, of grace and of the incredible joy of sweet relief and the sweet ability to dream.

Praise God.

Yesterday was Grand Rounds and I was post call. It was on chronic pain in connective tissue disorders….NO REALLY it was.  I slumped in the back, ate my oatmeal and hoped that sleep would overtake me quickly. It was all fun and games while the geneticist gave an explanation of connective tissue disorders. Then the rheumatologist went on about Fibromyalgia and JIA.  I drifted in and out. Then the psychologist got up to talk and went on about chronic pain and patients (our) poor quality of life.  And how much they (we) feel persecuted in the hospital when they come seeking meds and how they pass up activites they would otherwise enjoy and then how there is a higher rate of suicide. They went on to talk about new research studies that were ongoing looking at day hospital treatment for chronic pain. and cognitive therapy.

I sat there in the corner in my imaginary white coat (I never wear one, it scares kids) and shook my sleepy head at this. Its all fun and games until someone misses the point.  Maybe part of why we have a higher rate of suicide and “poor quality of life “is not so much our pain but the medicine we use to treat it. And medicine in the literal and larger sense.

What if instead of taking our chronic pain patients out of society and out of school to be in a day hospital program, we find ways to help them engage in life? What if instead of giving narcotics like candy to our sickle cell population, we tired alternate methods or we at least stop complaining about how they are addicts because WE (the doctors WE) gave them their addiction!! What if we stop trying to make pain less depressing and find ways to make life more worth living? What is our goal, be pain free, or be living our lives?

I agree grand rounds friends, chronic pain is a mind game.

But its some what clear to me that you have never played.

Chronic pain is a series of choices.  Difficult choices. Defining choices but choices never the less.  Every day you wake up and you decide what rules today?  My life or my pain?  Do I fit my pain around my life or fit my life around my pain?  You can tiptoe around on eggshells and slip and fall or you can run and not look back.  You don’t choose to live with pain but you do choose to live to the fullest. TO live with joy. To live with gratitude.

Doctors, all the study show we are actually quite bad at understanding what “quality of life” means to our patients so maybe we should listen to them.

I rolled my eyes and my wheels and took my poor quality of life upstairs to rounds and helped save some lives. Then I went home, had a mug of tea, a long bath and a nap. I woke up and read a book, went to bible study, came home and finished the book.

Like I said me and my poor quality of life…..

“To whom much is given, much is required.”

90% of the world’s children live in the developing world and a huge chunk of them have limited access to care. In the world of endless ventilators and children who are trached and have permanent feeding tubes where I live it is easy to forget that most children are lucky if they can get IV fluids.

We have so much.  And much, much is required.

As I stare in the face SHINY HIP number two a procedure that costs 50,000 Kenyan Shillings and probably at least 30,000 to 40,000 US dollars.  I am so grateful. So grateful. That I don’t have to go beg my relatives to come up with the money or choose between eating and my medicine.  I am so grateful for my magical insurance card that several precious friends here in the States do not have. Not to mention for the divine provision that the best surgeon in the US is at my finger tips in network, four hours from my parents’ home.

I have been given so much.  And much, much is required.

I am disappointed about canceling my trip to Zambia in Jan, a casualty of the scheduling changes that took place to make way for the shiny hip. But I am so grateful. So grateful that I have been given a way out of the constant pain and the progressive disability so that I can be healthy enough to move to Africa full time a year and half post-op.

So much given and I am ready to do what is required.

bad lungs.

bad gut.

bad heart.

on a ventilator.

cant eat.

…can’t fix the heart. (inoperable)

The heart will be the end of him.

I got a page asking for restraints.

I go and see him

He is waving his little arms and legs.

Looking at the world.

They tell me they are afraid of toys.

Because it might overstimulate him.

Overstimulate his fragile broken heart.

I find a rattle half buried under blankets.

His eyes light up and his hands reach out.

His heart rate is steady,

his breathing is smooth and unlaboured.

He smiles.

I say to heck with his heart.

which I can’t save.

No I won’t restrain him.

Play with him. I tell them.

I cannot save his heart.

But I can save his baby soul.

A soul that just wants to learn

and play

and love

and be.

when I meet a teenager with a terrible disease

that is a slow, gradual but inevitable death.

Cystic Fibrosis.

She has a giant pneumothorax and a chest tube to let it drain.

Her lung function is 40% of what it should be.

She has done all the right things.

But she is losing the battle.

She has lost 8 kg (20 pounds) in 6 mons.

She looks at me through her oxygen mask with big set eyes that know what’s coming.

…

Another family, another wee hour of the morning.

A father still grieving for his lost child.

is here again with another tenuous fragile life.

in severe respiratory distress.

so bad that I can’t take them, they need to go to the ICU.

as I sit there explaining what will happen next.

Dad reaches out and grabs my arm and says

THANK YOU

I melt into a puddle of exhaustion and awe.

That this Dad in his grief and his worry would reach out and acknowledge me.

….

I have a progressive illness.

If my right hip was a lung.

It would wheeze

and collaspe some times (pneumothorax).

It would sputter and retract.

There is nothing as merciless as watching your child or your own body fail you.

I understand on some small level what that’s like.

The fear. The pain. And the complete loss of control.

But in the end my disease will not cost me my life.

And I can’t help but be impressed by the grace and hope

these children and their families find in these moments

of foreshadowing.

I pulled it out of the garage, mounted and went to pedal.  Seering angry painful sounds came from my left hip and I doubled over from the shock of it. Tears came to my eyes.  Panic filled my head,  what I have been denying for months came to a head.  My left hip was falling apart and while it might be a bike this week it would be walking eventually.  I had been fighting the battle for months with steroid shots, NSAIDs, doctors’ opinions, yoga, prayer, positive thinking, denial, you name it. But in that moment I realized the war was lost.  At 24 yo I was facing the haunting reality that my disease was eating away at my hips, my function and my biggest fear my independence.

My parents came outside having seen me double over.  I brushed it off, got off the bike and told them I think I should get back to NC a few hours early to read over my pediatrics materials one more time and go to church with some friends.   I grabbed my bags, threw them into back of my car, hugged my parents and then proceeded to cry for 2 hours as I drove to NC.

It would take me a whole year to finally muster the courage and the trust to finally take the plunge and fix the hip. The bike stayed in the garage looking sad. I avoided looking at it.

Then finally three years later when I moved into my new house in May, my Mom bought my bike to my new garage. I mounted it briefly and was pleased at how painless it was despite the right hip is going too now. But I avoided it for a few months partly my schedule, partly it was so hot and partly because somewhere deep down I think I feared the humiliation and remind of my vulnerability.

Today I woke up at 2 PM after working an overnight and all of the sudden was determined to go for a bike ride. I went to Wal-Mart purchased a bike helmet, bike lock. I grabbed a bottle of water and I rode through the square and around the block. My neighbors stared at my bike a bit like they might stare at a circus truck and over dramatically veered out of my way.The hills around here are a bit brutal on my inexperienced legs  and I didn’t go very far. My right hip protested a little but it was bliss.

Redemption.  Sweet, sweet redemption.

I am going to do it tomorrow all over again.

I am among a very friendly, although intense community of young physicians who inspire me and challenge me.  They also want to do things like a be a pediatric heptatologist when they grow up or a palliative care/hematologist/oncologist or be a cardiac ICU doctor.  They are impressive and are being groomed to have impressive careers.  Occasionally I get caught up in the mist of it and try to play the game  but win or lose I find myself looking down at those streets and thinking about how different my life will look in 10 years than nearly every other graduate of my program.  Sometimes I don’t know how to fit my career goal into some sort of acceptable academic mold. (Although if I was really trying to FIT IN maybe I would give up the TIE DYE t-shirt collection on call…and actually WEAR my white coat).  WHen people ask me what I want to do with my life….the expression on their face when I say global health doctor is something akin to shock or a sad smile as if to say “We’ll see how long that lasts….”  Then there are my recent attempts into the array of ACADEMIC global health which is just like what it sounds…. a complete paradox. So far it also seems like a mess….its like combining developing world bureaucracy with academic medicine bureaucracy which make s system that makes Africa time look like a New York minute and Eastern European bureaucracy look like excellent customer service… In T-minus 24 months I am supposed to have a plan. I am supposed to live the dream and all that jazz. In a year I need to be turning in applications for either EM or a mission agency.  This is it…this is what I want to do with the rest of my life…but who knew the rest of my life was only 24 months away and who the heck knows how to get there….

Then there is the typical double agent-ness.  Although its been a really good year in terms of my life as a patient. Its a calm before a familiar storm.  The steroid shot is buying me time.  How long is yet to be determined but if I have another winter like this past one I don’t think I will want to go through a third.  So despite the fact I haven’t taken the green machine to work in two weeks, I know I am simply riding a false high that will eventually bottom out most likely sometime like the middle of PICU or worse my first month as a Sr in the ED and force me to come to grips with despite two years of magic I still have a chronic illness and I am facing another life altering 6 months of a massive surgery that will most likely per usual live me with a hgb of 7.5 followed by mild hysteria over how can I work 7 days a week and go to PT 5 days a week and keep my health insurance….so that I can pay for the monstrosity and live to tell about it.  Its most likely going to happen before I graduate.    I may be the doctor now but that does not give me a immunity. I also cant help but occasionally despite how different here is than back home in terms of patient/family care….chiming in with the other half of my life on rounds….and finding everyone staring at me like I have three heads when I suggest we introduce two of our patients close in age and with the same type of cancer…. FOr the love….we can get their parents’ premission first…I am not crazy I just happen to have be a agent from the light side (for we all know that the doctors are part of the DARK SIDE )…on second thought I will go back to updating discharge summaries….ignore me I just work here…

My patients don’t have a buck and they don’t have a vote, they can’t buy their own health insurance/health savings account/or even barter a chicken in exchange for their care. So no matter your opinion or political affiliation, stand up for your children and grandchildren (Not to mention all my people who always get the shaft any way (all the gimptastic, disabled kids who need health care so they can grow up and become politically incorrect pediatricians if they want)).They are the future voters, physicians, teachers, politicians and citizens of this country. They are also the patients whom if we don’t provide care for now will be the future citizens on disability, medicaid and welfare.

Please help me support children! Please help me by clicking on the link through the National Association of Childrens Hospitals and sending a letter through their program to your representative. (it will link you to the right people in your area through the link and it took me exactly 125 seconds) (or if you have more free time than me and feel inclined write your own letter). Make sure to note your local Children’s Hospital or a Hospital that has made a difference in your life or the life of your child or grandchildren!!!!!!!

HELP KIDS!

Love,

Amy

(just another American voter who just works 90 hours a week to takes care of other people’s babies who apparently are just not that important)

But I was a good girl.  I made inquires and I found a surgeon right here in town who not only has experience with the injections but has experience with transition cases due to some special interests in perthes etc.   So I move around my life and manage to get an appt yesterday fully prepared to get the shot and be back before my clinic started.  He walks in, comments ” Your left hip looks fine (because a  hip replacement at 25 is totally fine). Your right hip has some deformity and arthritis (YOU THINK?) and yes I can do the shot.”

…in the OR (which means I get to pay for the OR TIME)

……at 7 AM (heart of rounds)

……..and you need a physical (another hour of missed work and ITS A SHOT I am not getting sedated and I AM 26 years old and other than ortho issues I have never been sick a day in my life…I never even had so much as a pneumonia)

………..and you have to come see me “post-op” (and yet another hour of my life)

:::Look of disbelief:::

“I don’t know how your doctor did it but thats howe we do it, its cleaner, more space for the fluro arm. “

(Cleaner…for the love its a shot like a vaccination…lets not make this melodramatic  and SPACE FOR THE FLURO ARM…we have them in the tiny little ORs in Kenya, ok you don’t need much space)

I tried to plead as a resident for a better time….no one seemed to care.  I tried to plead as a 26 yo to waive the physical requirement…he says anesthesia is who makes that call (BUT I AM NOT GETTING ANY BECAUSE ITS just a shot).

it was an epic fail. Failure to understand where I was coming from, failure to understand that the purpose of this procedure is not to relieve my pain ultimately but MAKE ME MORE FUNCTIONAL AND MISS LESS WORK.  Failure to understand that maybe OR time + three doctor appointments would max out my insurance’s patience and put a hardship on my little post-grad budget.

so in the end I am settling for pain patches and an appt prior to flying out to Kenya in Baltimore with a surgeon I trust who will not charge me up to a 1000 dollars for a shot that if I had a fluro arm I could do myself.

heck maybe I can just sneak down into the fluro room at work….at 3 AM no one would notice.

just kidding.

Just keep smiling. Just keep smiling. Just keep smiling. Just keep smiling. Just keep smiling.

Fall down. Get up. Fall down. Get up. Fall down. Get up. Fall down. Get Up.

Welcome to the world of chronic illness. It a series of failures…I mean victories.

You go from sailing above it all filled with gratitude and in awe of the normalcy of your life. You marvel at the beauty of being able to get through your day with ease, without pain or torture or a series of endless decisions that will alter the course of your life.   TO scraping yourself off the bed just hoping you can make it to the bathroom without falling over or depending on the situation passing out/etc.    Some times the fall is a slow slide where you can igore the signs, sometimes its a cliff that you fall and find your hurled to the bottom of the canyon.    You can try to find something hold on to cushion the fall or let you sit on the hill for a little while waiting for the land slide.  You become an expert at denial and justifying away the signs because the last thing you want to do when five minutes ago, an hour ago, last week, two months ago you were living at the top in the glorious glow of what life should be is admit that its back or that you are here again standing in the canyon or half way there looking up at the rock face you have to climb back up.

There is nothing in this world as humbling as the human body capacity to fail. and lack of human ability (particularly that of individual involved) to control it  I would know….on multiple levels no less.

Fall down. Get up. Fall down. Get up. Fall down. Get up. Fall down. Get Up.

I watch it. I live it. I study it.

You would think that after 26 years I would not wake up feeling like I just lost my best friend when this happens but I do. I feel isolated, lonely, anxious and at times a little frantic.  Frantic to be able to predict what happens next and frantic to do whatever I can to get back to the top and pretend like I never had to come back here to the bottom.   And then I feel ashamed even though I know its irrational. I feel ashamed to be in the way, to be less than a 100%, ashamed that somehow I again was not able to make it work even with all the efforts somehow in the end I still failed to hold on.

Its irrational, its futile and no one talks much about this stuff in medical school but in the end to me its the defining experience of chronic medical problems.   And sometimes in the other half of my life, I look into the eyes of sweet children and I see there just below the surface a longing to be free of the cycle or at least be allowed to talk about it…to confess it.

For just a moment they want to not be the hero that everyone around them applauds them for being or not be the withdrawn or the demanding kid with behavioral issues, for a moment they could just be allowed to say they are tired, that they are weary of the procedures, the plans, the protocols and the exercises that are required of them and just for a moment be allowed to choose sanity and scream and wail and say THIS REALLY SUCKS.

and then be allowed to move on.

so yes world having no hip cartilage sucks.

having no hip cartilage and working 90 hours a week really sucks.

having multiple joint replacements before I turn 30 or have a REAL job sucks.

and that my friends is a victory.

saying it out loud.