Thursday, January 17

(Sporadic) Money Update: 2018, or, Imagine Me Rolling My Eyes

I am so sick of paying down debt.  So let's talk about it!

My husband and I are in the middle of this debt-paying thing.  At this point we have completed several of the most important steps:

- figured out how much debt we actually have, which is horrifying but necessary
- refinanced all of our loans for a lower interest rate (which will save us approximately $40,000 over the life of the loan)
- sucked it up and started paying ridiculous amounts of money on our loans

That means that we are in the "paying ridiculous amounts of money" stage.  On average, 40-50% of our take-home pay goes directly to loans.  That's to pay the minimum on everything.  So we pay it.  Every month, we pay it.  We pay it, and we pay it, and we pay it and pay it and pay it.  And still there's more.

So where are we after about two years of payments?  We started formally tracking our debt in January 2017.  At that point we had already been paying things down for about four months, and we owed $472,016.32.  Our new debt total as of Jan 1 2019 is... drum roll please...

$369,580.07.

I gotta say, being in the middle of paying down over $500,000 is a drag.  I mean, is that second number even lower?  Are we making a dent in this?  Supposedly if we keep things up at this rate, we will be debt free except our mortgage in another five years*, but right now it feels like we're throwing money down a bottomless pit.  We're not filling anything in.  We can't even hear it hit bottom.  It just silently disappears.

I think it's important to note that paying debt isn't the only thing we are doing with our money, at the behest of our financial advisor.  He told us to prepare for the future and also to live our lives.  Because of this we clearly are not strict (or loose) adherents to the Dave Ramsey method.  We maxed out my 401k last year.  We have a properly stocked emergency fund with several months' of expenses tucked away.  We even made a small addition to our house last year.  And it's all great, but I hate it at the same time because I will never feel like we are making meaningful financial progress until our debt is going away.

Okay, if you're so sick of paying debt, why not move under a bridge and put all of your money towards your debt for a couple years?  Because that would be stupid, that's why.  Bridges are cold and there's nowhere to cook dinner down there.  But I see your point.  There's room for us to tighten our belts and get more aggressive with our debt, or at least there was last year.  This year, there's no rocking the boat until we know what things will look like financially.

I guess we will just keep paying the same payments for now.

::eye roll::

------

*We have several different loans and they all have different terms.  The smallest loan should be paid off in about a year; the next smallest, about a year after that.  Then all that's left are the big ones, which should be paid in full sometime in 2024.  They talk all the time about how doctors are really good at delayed gratification, but I cannot overemphasize how impatient I feel about getting rid of these loans.  So five more years = an actual eternity.

Monday, January 7

Uncertainty, or, 2019: Midnight Tracks

I love planners; I'm a bit obsessed with them, really.  I've always had one.  I think by nature I'm a plan-maker, someone who takes the long view.  Years of practice and training have taken my penchant for journalling and turned me into a list-maker as well.  At this point, if I don't have a formal planner, I eventually clutter up my life with piles of to-do lists and thought fragments.  This year, when it became fatiguing to write, I tried to abandon my paper planner for digital alternatives that I can talk into, but it's not the same.  So a 2019 paper one it is.  Usually I get something with monthly and weekly pages, and room for notes - pretty standard.  My planner choice* is different this time, though.  For the first time, I want a goal-setting planner, I think for several reasons.

For years, I have lacked a lot of control over which goals I pursue and how.  It's part and parcel of medical training; if you want to be a doctor, your life is going to look a particular way for a long time.  Someone else tells you how much you are going to work, what you're going to work on, etc, and that process doesn't leave much room for other things.  Even when I got off the training treadmill, I was working quite a bit.  But with everything that happened this past year I made the decision to finally work less, and I've scaled back a lot the past six months.  It's freed up a lot of time that I'm not sure what to do with.  I don't want to get stuck in a rut so early.  I like the sense of satisfaction I get from choosing a project and completing it, or taking aim at a challenge and conquering it.

If I'm being perfectly honest with myself, though, that's not the only reason. I want control back.  Remember when I said I feel like 2018 happened to me?  I don't want that for a second year in a row.  And there's so much about this coming year I can't possibly control that I feel the need to control what I can and make sure I do it right.  Which brings us back around to the uncertainty of my circumstances.

I don't know much about how things will go this next year, and that scares me.  Don't give me any crap about how "technically no one knows what the future holds" - most people can reasonably predict how the coming year will go, barring catastrophe.  But where will I be in six months?  Will I still be able to safely, confidently work in emergency medicine?  If not, what do I do for work that won't make me miserable?  Will I still have the use of my hands?  How will my personal functioning change?  How will our finances be affected?  Speaking of finances, my husband starts a new job this year with uncertain income, a big change from his previous salaried position.  So neither of us can really be the safety net for the other.  So... there's no safety net.

We are launching into this thing, ready or not, no parachute, no seatbelts.

Which is not okay with me!  I cannot plan my way out of this uncertainty!  I have no way to make sure I know what's going to happen!  And anything could go wrong!

...It's probably time to take a deep breath.

Okay, a few deep breaths.

This planner can certainly help me dream and set some tangible goals.  But it can't take away my grief over my condition or fear of the unknown.  It can't give me courage to face the future.  Only God can do that.  And only if I let Him.

----

I woke up this morning with a song in my heart. It's called "Wherever You Go" by Audrey Assad, and the first verse goes like this:

There's a train leaving your heart tonight
There's a silence inside your head
You're running
You're running from me
Down the tracks on a midnight line
There's a red moon in the sky
You're running
You're running from me...

I didn't know at first why that song kept playing through my mind, but it lay on me heavily all morning, letting me know it was more than just another melody stuck in my head. Then I realised. It's a song about running from God in the face of suffering, and the further suffering that comes from that, and how He pursues us faithfully, always ready for us to come back to Him. It took that song and a sermon on Ezekiel 37 for the true extent of my crushing anxiety to become clear to me. It's hard for me to accept that God may not spare me more pain; that's not a promise any Christian is given. It's hard for me to trust that His ways are good even when they're painful.

But what, like my ways are better?

God is not a fallible, limited human; he's God. And He loves me, not in the flawed way a human loves, but with a perfect, selfless, unfailing love. How could I not trust Him?

Today, for the first time in several months, I looked at all my worries and merely felt content. "God will take care of me," I thought.

And He will.

-----
*If you're wondering what I chose, I eventually decided on one of those construct-your-own planners from Inkwell Press.  Pricey, yes, but in theory reusable, and it had the modules I wanted.  We'll see how I feel about it.

Tuesday, January 1

Uncertainty, or, 2018: A Retrospective

What a year.

Did anyone else have a really eventful 2018?  I certainly did.  The time passed so quickly that I'm tempted to say not much happened, but that is completely wrong.  Enough happened this year - and enough is happening next year - that I've decided to do something I've never done before and try to look back on the year as a whole.

On the professional side, I changed to full time emergency medicine.  That was something I'd given up on years ago even though it's what I'd originally wanted - in fact, was what I wanted right up until I stopped wanting anything from medicine.  But this year I feel like I got to live my best EM life!  I attended my first big national EM conference, which was a blast.  I saw a whole bunch of things I've never personally managed before, from severe carbon monoxide poisoning to being a bystander on scene at a trauma (terrifying!  never again!) to adult intussusception.  Overall I feel like I grew from a junior member of my group into a more experienced and reliable physician, and I really like that.  I can tell I've racked up professional trust with my colleagues; it isn't that I ever did something to make them not trust me, but rather that there's no shortcut.  People have to see that you know what you're talking about before they will rely on you, and that takes time.  It's a privilege to know I'm putting that time in.  It's a gift to enjoy medicine again.

Even though my job is very exciting by nature, I arguably had a more tumultuous personal life this year.  I had the privilege of travelling to no less than three weddings this year, all for friends/ family I love dearly.  Given the amount of important life stuff I've missed over the past ten years, this was pretty heady stuff for me.  I started to write again after a years-long hiatus.  I had a totally undangerous but very real brush with PTSD (did I not tell you about that?  A story for next time).  Because of that, sleep has been a fickle friend, at times leaving me so exhausted I'm nearly seeing double.  My husband made the decision to change career paths both much earlier and more drastically than we originally anticipated.  Oh, and I was diagnosed with an incurable, progressive neuromuscular disorder.

I mean, that's a lot, right?

With all the ups and downs, the travel every other month, the massive life-changing upheaval of my condition, by the end of the year I was emotionally tapped out.  It's why I haven't posted much lately.  I worked Thanksgiving and Christmas and my husband and I didn't go anywhere or see anyone.  The quiet has allowed me to start to get my bearings somewhat.  I'm used to feeling like I accomplish things every year, but this year I feel very much like 2018 happened to me, like I was a passive recipient of the events in my own life.  I think I'd like to reclaim some agency.

You know, for most of my life, things have felt almost like they were on rails.  I don't know if anyone else can sympathise with that.  I chose a career that is very demanding, yes, but at the same time has a very defined track.  I remember saying to myself countless times that all I had to do was follow the plan.  High school.  College.  Med school.  Residency.  Just follow the plan and everything would turn out.  And I suppose it did, more or less.  But I am thoroughly out of plans now, and I've never been in this place before.  I reached the end of the list.  I've run out of rails.  How could I not have noticed that all my plans petered out around age thirty?  Although I suppose it wouldn't have mattered if I had planned clear out until I die at age 82; I never could've foreseen where I am now.  I had no idea I would be diagnosed with Charcot-Marie-Tooth disease or the extent to which that would change my life.

And so here I am.  No plan, a checked-off list.  I'd actually be content to cruise along like this for a few years, just study and work and live and improve in my faith and my craft and my relationships, but because of my disease I don't think I'll get to do that.  It won't be the way everyone else gets to do it, at least.

So... now what?

What the hell am I meant to do now?

Where will I be in a year?

For the first time in my life I honestly cannot say.

Perhaps the better question is this.  How do I face the uncertainty of the rest of my life, both short- and long-term, and to what extent do I try to plan?

Wednesday, December 12

Reflections on Primary Care

Just because I haven't written about burnout in a while doesn't mean I don't still care about it.

Over the past year or so, I've become an avid, sympathetic reader of a blog called Reflections of a Millennial Doctor.  The author, M, vividly details her struggle with burnout and giving up on primary care.  She fought so hard this past year, wrestling with whether or not to stay in her current practice or throw in the towel and try her hand at something else.  She recently admitted that she will be leaving her practice soon for a job as a hospitalist.  I can relate - not to the hospitalist part! I hate hospital medicine.  But her tale of getting bled dry by her clinic job resonated with me deeply.  Honestly, I don't know how her primary care dreams survived her training.  Mine didn't.

I remember being a medical student and writing an essay about the importance of trajectory change for my family medicine residency application.  The goal of primary care, I wrote, was prevention through education and support of healthy habits.  The reasoning is this: if you can get a person to make small healthful changes now, those will yield more and more benefits as the person gets older.  You can change the trajectory of their health long term.  It seemed elegant, noble, necessary.  I pictured myself as a healer walking with my patients through their highs and lows, providing gentle guidance as they lived their best lives.

It all sounds like so much romanticised horseshit now.

Okay, I'm being unfair.  Not horseshit, precisely.  But close.  You see, while the theory still sounds reasonable, I never saw any evidence of patients beginning trajectory change while I was in residency.  We would set goals together, and they would fail to start taking their medication or checking their blood sugar.  I would hand-write instructions.  They would never make that fabled appointment with a therapist.  I would encourage, give hugs, follow up by phone.  The visits were often very positive.  But they never started going on those ten minute walks.  They never started working on sleep hygiene.  They never cut down on their smoking, or alcohol, or Dr. Pepper, or street drugs.  They never added in that daily vegetable.  They came to me for help, but never seemed to do anything I asked them to do.

Except come back.  They were always willing to come back and see me, sometimes for months on end.  I spent about a year wondering why people were so happy to come and recycle through the same spiel of mine over and over again while doing exactly zero of the things they said they would do.  Eventually I realised it was at least partly because of me personally.  They liked me.  They liked talking to me, spilling their problems to a sympathetic ear.  They liked that I believed in them, not because it actually galvanised them to change, but because I was nice and that felt good.  Realising that I had become an emotional ATM - that I was no source for solutions but instead just a new component of their problems - signalled the beginning of the premature end of my primary care career. 

Those patients broke something in me, not like a bone that heals and grows strong again, but like a glass vase that, once shattered, loses both its present and future potential for function.  All you can do is clean up the mess.  You try not to get cut on the pieces as you go.  Eventually you replace it with something uglier but more durable; I am not capable of investing to the degree I once was.

Just like M, I pulled the chute.  Unlike her, I had no optimism left after residency, so I yanked that ripcord way earlier.  I actually applaud her for giving primary care a try for a while to see if it was different after training.  I have to say, though, it really doesn't surprise me that she found it to be more of the same. And it doesn't surprise me that she has been driven out by the impossible demands of her job. I can't sustain a job where the patients I'm taking care of have no buy-in with what I'm telling them to do, and it sounds like she can't either.

God has blessed me enormously by allowing me to get back in the ED, where I discovered that I can still love medicine.  I love my job so much now that even in the face of my burgeoning disability, I am determined to fight through to stay in this field as long as I safely can.  I truly hope she finds the same.

Friday, October 19

Sometimes they live

A patient walked out on me the other day.

It doesn't happen every day, but it happens often enough.  I usually never find out why.  Sometimes it's to go pick up children or meet another time-sensitive obligation.  Sometimes it's to go smoke a cigarette or get a dose of drugs.  I think sometimes they get scared and feel as though running from the department can help them escape their diagnosis.  Whatever the reason, I learned early on that I have to be able to let those people go.  The other side of the patient autonomy coin is this: they're responsible for getting the care they need and it's not my job to force or coerce them.

Except when it is.

-------

"My stomach really hurts."

I sighed internally. Another belly pain. Any ER doc can tell you abdominal pain is one of the vaguest, most potentially frustrating complaints that we see.  It could be anything.  Dissecting aorta?  Gas pain?  Sure, I don't know, maybe.  Sometimes it turns out to be a horrible emergency. Sometimes I send dissatisfied patients home without a diagnosis because all of my work up was negative. There's often no way to tell in advance.   This lady didn't look too bad just sitting back in bed, although that can be a trick in a patient who is naturally stoic.  Vital signs looked normal.  I listened to her story.

"I've never had pain like this, doctor.  It's been there for days, just comes and goes, but today it's not going away and it's been there the whole afternoon.  It hurts so bad, right here."  She gently pushed on the right lower side of her abdomen.

I nodded, now mildly concerned.  Pain that gets worse or is the worst pain a person's ever felt can be a worrying thing.  It can also be crap (figurative or literal).  She was gesturing to the part of the abdomen that contains the appendix, which is not good, but at the same time she was sitting up and pressing on her own abdomen, which is generally a good sign.  On the badness/ not badness scale, she was still squarely in the middle. 

I did a quick exam.  The right side of her belly was a little bit tender when I pressed on her. "Do you still have an appendix?"

She squinted.  "I think so?" (You would be surprised how often people are not sure which organs they still have.)

After another internal sigh, I grabbed her chart and turned to go. "Well, let's check some lab work and a urine sample.  I think I'd also like to get some imaging of your abdomen."

She shook her head. "I don't want any imaging.  Can we just do the blood work and see what that looks like first?"

Eh?  Whatever, fine.  We're not that busy and she doesn't look sick.

A short while later, the patient was saying that her pain was worse despite two doses of IV pain medicine, and all of her bloodwork looked normal except for a slightly elevated white blood cell count.  A slight elevation can be a sign of infection, inflammation, or just pain - so again, a completely nonspecific finding. I stopped back in to talk to her.  Did she look a little pale?  "If you're doing worse, we really need to get a CT scan of your abdomen, especially since you're hurting in the right area for this to be your appendix."

She grimaced. "That will take a long time, though.  Do we really need it?"

I frowned right back at her, unimpressed.  "You tell me. Isn't this the worst pain of your life?  If so, don't you think it's worth waiting around a while longer to try to find out what's hurting you so bad?"  We went back and forth a couple rounds, but she acquiesced eventually.

Then she disappeared 10 minutes after the scan was done.  No warning, no announcement. She just left.  Honestly, I had other patients to take care of.  I shrugged and moved on.

20 minutes later I got a call from the radiologist.  You never want a call from your radiologist.  It means they've seen something serious enough that it needs to be passed on in real time; they cannot wait for you to just read their report.  "Hey, did you get a look at that CT scan?  Your patient has an intussusception.  Pull up the delay sequence and look at image 47."

Say what?!  In a young adult?

I pulled up the images in a hurry, and there it was, a couple of tightly nested loops of bowel sitting in the right lower quadrant of her abdomen.  The last part of the small intestine had telescoped into the beginning of the colon and gotten stuck there.  There were clear signs of edema in the fat around the bowel, indicating that the blood flow had been cut off for long enough that the bowel was starting to die.  In these cases, the segment of stuck intestine must be either un-telescoped or removed.

Intussusception in an adult is a surgical emergency, and my patient was no longer in the department to have her emergency surgery. 

The radiologist and I pondered what to do for a few minutes. After all, she had left without being discharged.  Would she actually return?  Would it be a waste of my time to contact her?  But what person in good conscience could fail to let someone know that they have a serious, urgent diagnosis?

Of course I called her.  She didn't explain why she left, but she also didn't resist my command to get back here right now because you are very sick.  She was in surgery by lunchtime.

The next night the radiologist called me again. He'd checked on the patient and wanted to give me an update.

"You know they had to surgically remove that intussusception, right?  It was so swollen they couldn't reduce it. I'm glad you called her."  He paused for a moment.  "You know, you saved her life by calling her to come back in."  I was taken aback and tried to demur, but he was having none of it. "No, Zoe, if you hadn't called her she probably would have come in way later, septic, and not done well.  I mean it, you saved her life." 

I brushed it off at the time, but a few days later his words came back to me.  Did I save her life?  In the most obvious sense, of course I didn't. The radiologist that diagnosed her did that.  The surgeon that took out her intussusception did that.  But... I did get the ball rolling by insisting on the CT.  And while it was a no-brainer, the phone call I made to bring her back for definitive medical care was undeniably important. Without it, she may have stayed at home until she was extremely sick indeed. 

I think I'm willing to give myself a small sliver of the credit in this case. Sometimes I get more and sometimes I get less, or none at all. But it's nice to see something I've done make a direct difference.  Sometimes I get to help save someone's life.  Even if it's just with a phone call.

Wednesday, September 26

Sometimes they die

Honestly?  I hate traumas.

I can't stop thinking about one I got a while back.  Auto vs. motorcycle.  A nice young man had been driving at dusk - not texting or anything as far as we know - and turned left in front of a motorcyclist who wasn't wearing any gear.  He never even saw the motorcycle coming.  The driver in the car was fine.  The guy riding the motorcycle - another young guy, I never quite learned his age - became our patient.  I was the backup doctor in the room but it still felt like he belonged to me.

Traumas don't go the way you would envision from watching a show.  Some of it's right.  People come in grievously hurt, smashed up or poked full of holes, and they get the full court press just like on TV.  There's a lot of chaos, a lot of tubes and urgent consultations over CT scans and shouting.  Who's got the blood and the tranexamic?  I need a bigger chest tube!  Someone hand me the iStat!  Let x-ray come through, please!  Hey, hand me that suction!  Okay, I've got two units here!  It's all very naturally dramatic.  And a lot of the time people make it through my part - the initial stabilization phase.  From there they often go to surgery, which for me means shipping them to a different institution since my hospital doesn't have a trauma surgeon.  That's one big difference.  Another is that people often have long-term physical issues as a result of any major trauma.  But usually they live.

Sometimes, though, they die, and no one shows you what that's really like.  It's... rough.  I'll spare you the gory details of the code on that motorcyclist, of which there are many.  Suffice it to say that a lot of us worked very hard on him, and he died anyway, and I had to use a lot of hydrogen peroxide on my shoes that night.  

One little snapshot has stuck with me in such a way that I may never forget it.  Me, on my way to the surgery changing area to change clothes and scrub the blood off my shoes, passing the man's widow.  She was facing mostly away from me, talking to a nurse.  She had the sneakers we'd pried off his feet not an hour before - no other personal effects, just the sneakers.  She held them casually in one hand while she rubbed her face with the other, as though the shoes still belonged to someone, as though she were delivering them to someone, someone still alive.  They were completely pristine.  It shocked me down in a deep, unexpectedly fragile place.  Why did she have those?  He died in those shoes, why would she want them?  Why were they so clean when his injuries had been so severe?  How could I walk past her like that when I had been unable to save her husband?  I turned my face from her grief and loss and kept walking.

Now I feel like every time I get in the car, all I see is people riding motorcycles without gear on.  It's a struggle not to roll my window down and yell at them.  Hey!  You want to come into the ER all mangled, is that what you want?  You want us to have to literally mop your blood off the trauma room floor?  You want your family to mourn you in the middle of my department holding your stupid shoes?

I know all my patients will die eventually.  I know I'm not God, to hold a person's life and death in my hand.  I know medicine has limits.  But it doesn't change how hard it is to lose a patient who was literally fine two hours ago.  I hate that.

Wednesday, September 5

Suffering

It's 6am and I've been up for three hours, the consequence of coming off a long weekend of night shifts.  I read for a while, but as often happens to me, eventually I was driven to write.  And so here I am.

My hands are healing, I think, and my feet.  In retrospect I've been through this cycle a dozen times before and just didn't recognise it.  It matches what my neurologist told me about my disease.  It's a cyclic dance, led by demyelination, followed by damage to the axon, the long delicate wire of the nerve cell, as it loses its insulating myelin sheath.  I lose some function.  Then comes whatever healing the body can muster and some degree of functional improvement - all set against the relentless drumbeat of the disease state itself.  So I get worse, and then I get better, sort of.  What matters to me now is that I've crossed back over the invisible line that lets me use my right hand.  I can write again, so I can do my own paperwork at work.  I can hold a glass in my dominant hand without thinking about it.  I can put my car in gear without reaching across my body.  I can type a bit.  I'm definitely not back to normal.  I still wear a wrist brace (like this one) on the right about half the time since it's very fatiguing for me to control my wrist and fingers simultaneously.  I prefer to use a big silly-looking pen that's easier for me to grip.  I've switched my mouse to my left hand and don't plan to switch back.  And at this point I still can't really do repetitive tasks that require fine motor skills - scissors, suturing, chopping vegetables.  But it's so much better than it was.

Obviously it's going to get worse again eventually.

I've been thinking lately about suffering, and about God's purposes in allowing His children to suffer.  I have found myself crying out to Him this summer in confusion and pain.  Why, God?  Why this?  Why now?  Why my right hand, the hand I rely on?  Why should I suffer like this?  It's a hard question, and a nuanced one.  It's different from painfully pouring oneself out to serve others,  different from the direct and expected consequences of sin, different again from persecution for my faith.  This just... sucks.  It sucks every day.  And nothing I or anyone else did caused this.  I think the temptation is to see suffering as meaningless, just a random consequence of living in a broken, messed-up world, but Christians don't have that philosophical out.  We trust and believe that we have a personal God, one who cares for us and is invested in us.  So why the suffering?

Yesterday I sobbed through a talk given by Joni Eareckson Tada, a lady who is a staunch believer in Jesus, an author, speaker, and artist, and a quadriplegic since the age of 17.  I highly recommend that you listen to the talk, although if you're not dealing with personal hardship/ disability it may not resonate with you.  She confronts the endless gauntlet of her daily life (you'd better believe that being a sharp mind trapped in a useless body involves suffering) with a matter-of-fact courage that frightens me.  She does not spare anyone the harshness of truth.  I'll give you an example.  For anyone, but especially a quadriplegic, to say, There are better things than walking.  There are better things than the use of your hands, is deeply shocking, right?  But with reflection I've realised that of course that is true, especially for a Christian.  Jesus is better than anything.

The goodness of God is the truth that sustains a person through even the deepest darkness.  I thank her for reminding me of that.  Joni Eareckson Tada exemplifies for me the concept of suffering well, something she touches on in that talk.  It's hard for me to get my arms all the way around the idea, but I think it's a mixture of day-to-day grit and unswerving, joyful faith in a good God.  I don't know how to do it yet like she does (I'll grant that she's had fifty years to learn how to suffer well and I've had, like, two months).  But I think most people never learn how.  It's just not guaranteed.  And I think it's a lofty goal but a worthy one, this idea of suffering well as a Christian.  I have this disease.  There is no getting rid of it.  But to suffer well... if that is my race to run in this life, God grant that I might achieve that.

Wednesday, August 15

Spoons

A few weeks ago, my hand cramped solid around a woman's leg while I was trying to put a splint on her, and then went limp for the rest of the shift.  Let's talk about spoons.

In my last post I mentioned that I recently got a lot worse as far as daily symptoms.  My legs and feet are definitely weaker than they were, but by far the most life-affecting change has been to my hands.  From the end of spring to now I've lost my ability to do most tasks that require fine motor control or forearm strength on my right side - and yes, I am very much right-handed.

Hopefully you are familiar with spoon theory, but if you aren't, here is a brief summary.  A girl with lupus was trying to explain to a friend how difficult it is to be chronically ill.  To show her, she gave her friend a handful of spoons as a visual aid to represent the units of energy/ function she had for the day.  Then they walked through the activities for a day, and the friend had a spoon taken away for each activity she chose to complete.  The friend quickly realized she simply didn't have enough spoons, or energy, to accomplish all the very reasonable things she wanted to do.  That was the point of the exercise - to illustrate that people with a chronic illness/ disability constantly function at an energy deficit for one reason or another that is out of their control, and that that deficit forces not just tough choices but decreased effectiveness compared to healthy people.

Having recently firmly crossed over from one camp to the other, I'm feeling this change acutely.

Normal healthy people have essentially unlimited spoons.  Sure, you're not going to climb a mountain and swim the ocean before lunch, but that's not what I'm talking about.  For a person without a major disability, your to-do list is mostly limited by time, not energy or function, and every day you complete a whole range of things that you need to do that don't even make it onto your list.  I can tell you this for certain because up until May or so, this was me.  Now I feel like I've gone from unlimited spoons down to maybe twenty-five, at least when it comes to using my dominant hand.  Mind you, this is for every task, not just heavy or difficult stuff.  So.  Brushing my teeth?  That's two spoons a day.  Makeup is a spoon because of the fine motor control.  A shower is a spoon.  Writing more than my initials?  That's a spoon minimum but usually more like 3-5.  Texting costs me a spoon.  Using eating utensils costs a couple spoons.

Sewing a laceration?  Fifteen spoons easy.  Same for splinting and most other procedures, because each of these activities encompasses a bunch of smaller tasks.  I found this out the hard way.  When I run out of spoons, my hand is completely done for the day, and if I push it, it might be done for two or three days.  I found that out the hard way too.

So after I had used a tape measure to measure my patient's leg, and manipulated the roll of splinting material, and used scissors to cut the tough, thick sheets of fiberglass, and manipulated the roll of material again, and pulled open several packages of ACE wraps, and gotten the fiberglass wet and then rolled it in towels (twice) to get it to activate, and molded it to her leg, and started to wrap the bandages around the fiberglass... I ran out of spoons.  My hand stayed in a claw for the rest of the splinting, and after I fled the room and stretched out the cramp, I was left with a limp noodle until the next morning.  I've done this twice more since then, each time with a different activity.

I am gradually, reluctantly learning to count my spoons early in the day, and to ration them.  As I mentioned earlier, this means both tough choices and decreased effectiveness - not cooking or doing chores or laundry on a workday, not doing procedures for the most part at work, etc.  I've been typing this post a little at a time over a week or so.  I can compensate for some things by using my left hand, but obviously that hand can't do everything a functional dominant hand could do - and it no longer has unlimited spoons either, and having two numb useless hands is more than I can handle.  It means putting more burden on people around me, which I hate and am not good at.  Everyone has been very nice about it, don't get me wrong, but I still feel like as an adult woman in my physical prime I shouldn't need help with basic tasks like writing or using scissors.

I just had my first physical and occupational therapy appointments and both therapists said that they could help.  I hope they're right.  I WANT MORE SPOONS.

Tuesday, August 7

News

I thought about being artistically coy in how I would introduce this post, but I can't bring myself to do it.  I got some bad news about a month ago and it has changed my life.

I was recently diagnosed with Charcot-Marie-Tooth disease In medical terms, it is a genetic neuromuscular disorder, caused (in my case) by a duplication of one tiny area of chromosome 17.  It leads to abnormal nerve structure and thus abnormal nerve signal transmission.  Over time, the nerves degrade and die off (this is called neuropathy), taking the muscles with them.  It starts in the feet and works its way up the legs, and at some point begins in the hands and works its way up the arms.  The rate and degree of progression is different for every affected person.

CMT is a progressive disease, and the form I have generally comes on slowly.  So it was with me, although I didn't know it.  I've been "clumsy" all my life, with weak ankles that are prone to rolling, and weak reflexes.  I've always gotten muscle cramps a lot.  My feet are always cold.  None of that held me back, per se, but there were a series of nuisances to be managed.  No stiletto heels.  Watch how you walk so you don't sprain an ankle again.  Do any workout besides running.  But otherwise, it was fine.  Then during residency, I started getting intermittent weakness in my feet and toes.  The cramps got worse.  I started having falls and trouble keeping my balance, especially when I'd been awake for long shifts or wasn't sleeping well.  People commented a few times on how my gait looked different, "like it's hard for you to walk."  They were right.  It felt very hard to walk.  I assumed I needed to sleep more and be more diligent about working out, chalked the falls up to residency fatigue, and kept pushing.

I know, I know.  I'm crazy.  No one in their mid twenties should be falling and having trouble walking.  I know.  But I... just didn't think about it.  I was trying to hold it together and finish training, and there was work to be done.  So I went to work.

Fast forward a few more years.  This spring I started tripping over my toes, and I realized I couldn't move them.  My right hand began cramping around my pen every time I picked it up.  I realized I couldn't feel the bottoms of my feet.  Then my knees started to constantly feel like they were giving out, and I finally got scared enough to pursue a possible diagnosis.  If you think a doctor can't have denial, think again; despite all of that I honestly thought they were going to tell me it was stress.  Instead, two neurologists and $3000 worth of tests later, I was given a diagnosis that explained every troublesome thing I've ever had with this body - and made it clear it is going to get worse.  And it has gotten worse; it's gotten a lot worse just in the past couple of months.  Apparently that happens sometimes.

I will be honest here and admit that I feel inexpressibly sad about it all.  I don't know what this will mean for my personal life or my career.  It's scary and taxing to try to navigate the sudden drop in my physical ability (a topic to discuss more in a later post).  I feel newly, terrifyingly dependent on Jesus, while at the same time I feel so confused that He would allow a time bomb like this to be seeded in my DNA.  I trust Him.  But I don't understand.

I expect the tone of this blog will change significantly from here on out but I don't yet know how.  I guess I'll just take it post by post and day by day.  But I knew that I couldn't blithely write about the happenings of my life and career while withholding this diagnosis.

Wednesday, May 16

On Terror

"EMS to ED."

My charge nurse hit the button on the transponder.

"This is ED, go ahead EMS."

"ED, this is EMS en route to your facility, emergency status - "

All the staff within hearing distance stopped what we were doing to listen further.  I work in a rural, medium size emergency department, so while we see a lot of sick people, on the whole it's fairly unusual for a rig to declare that they are coming in under emergency status.  The vast majority of patients that come to the emergency department via ambulance are declared non-emergency status; that doesn't mean they're not sick, but it does mean they're not in the process of dying right now.  The distinction matters, because emergency status patients require doctors, nurses, and multiple other staff members (respiratory, radiology, laboratory, etc.) to be present and ready to receive the patient in the room before they even arrive.  It's often an all hands on deck situation and the rest of the department is put on hold while we all deal with this critically ill or injured person.  It probably only happens a few times a week.  The department had a rare quiet moment as we all waited for more information.

"We have a three year old post drowning.  She was underwater about 10 minutes.  She does currently have a pulse back after CPR, remains unresponsive and we are bagging her..."  The EMT started rattling off vital signs as a mixture of groans and sighs sounded around the nurses' desk. 

The charge nurse jotted down the vitals and when the EMT was finished, said, "Understood.  Room 1 on arrival, see you when you get here.  ED out."

Wait, I thought.  Wait, wait, wait.

Room 1?! Room 1 is my trauma bay today! I pressed my hands together in my lap and tried to keep my expression neutral as fear sank its claws into my belly.

Lord, please help me. 

You already know this, but...

I have never resuscitated a three year old before.

There's a particular feeling that I get these days when I feel like I'm in way over my head.  I get the urge to look around like there's someone who can step in and dig me out of whatever crisis I'm managing, and then I have to remind myself, Zoe, you're not a resident anymore.  There's no one to help you out of this.  You can do it.  Figure it out. 

I cannot overstate how scary it is to go through this time and time again.  And it doesn't even matter that I (generally) know what I need to do, or at least what I need to do next.  It doesn't matter that I've done it all before under supervision.  It's still terrifying to be out on my own every time I do something solo for the first time.  The first time I set a broken bone without supervision.  The first time I couldn't stop a seizure.  The first time my patient lost their blood pressure, the first time I oversaw chest compressions, my first stroke patient, first major heart attack patient.  The first time I walked into a room to see an artery bleeding everywhere and had to stop the bleeding all by myself.  The first time I had to decide to intubate a patient - and then intubate them.  For the first six months of this job I would lay awake the night before every shift because I was so nervous about what 'firsts' I might greet the next day.  I sleep better now, but I still get an uncomfortable adrenaline dump when something new comes in the door.

That little girl came in seizing and I had to intubate her - the youngest patient I have had to intubate to date.  I am proud to say that my team was able to stabilize her and get her on to the nearest children's hospital with minimal delay, and I heard through the grapevine that they were able to wake her up a little while later and she's doing fine. 

My partner, a much more experienced ER doc, congratulated me on the smooth resuscitation afterward.  I mentioned how scared I was in the room, and I asked him when that gets better.  I thought he would say that after a couple of years the fear fades, once you've cut your new attending teeth on most of the types of high-stakes decisions you will face in this line of work.

Instead, he laughed.  "Wait, is it supposed to get better?"  He leaned back in his chair and yelled out of the fishbowl at the other doc working with us that day, another very experienced emergency medicine guy who has worked in a lot of different environments. "Hey, Zoe wants to know does this job get less scary with time?"

I heard more laughter, then,  "What, is it supposed to?"

"Ha!  That's what I said!"

"Man, if it's meant to get less scary, I'm doing something wrong!"  They both laughed again, and the first guy turned back to me.

"I don't know that it gets less scary, Zoe.  You just have a better idea of how to do some of these things as you do it more.  But it will always be pretty tough work.  People are complicated, you know."

I sighed.  "Yeah, I know."


Friday, April 20

Change

So I'm changing things up for myself.

When I finished residency, you may remember that I was pretty much done with medicine but still needed to earn a living in order to pay off our debts.  I chose urgent care because I needed something that was simple in terms of the mechanics of the job and emotionally undemanding in terms of the patient care required.  I think urgent care is pretty much the pinnacle of that.  See patient, make 1-2 decisions regarding care, discharge patient, write short note.  Move on.  No call, no critically ill patients (most of the time), minimal paperwork, few moving parts.  The hiring process went very smoothly.  But for some reason that I barely understood given that I felt like I was aiming to get out of medicine altogether, I threw in an ask in my interview: I wanted to do a little work in my local ED if they were amenable to that.  It turned out they were.

For the past year and a half, my schedule has been gradually transforming.  Initially I was truly just an urgent care doc, which was fine.  After a bit I oriented in my local ED and felt a little glimmer of interest.  They liked me.  I started to pick up a handful of shifts a month there.  After a few months of that, they asked if I could be one of their main backup people.  I said yes, but with some trepidation.  The work is hard, you know?  I wasn't sure I was really up to hard work if I didn't have to be.

They continued to like me, and as I started to rack up nights of good sleep and days that I didn't hate, I finally admitted to myself that I liked being there.  For about six months my schedule was split evenly between the two locations.

Finally this past winter I realised that I am starting to get bored with my urgent care shifts.  It has nothing to do with the urgent care!  It remains a good job with lovely people and very nice hours.  But I do feel that I've ascended the learning curve there; the only things which are challenging now are cases which would be unusual in any setting, or that draw on areas of medicine that I don't practice.  And I feel that I'm ready to do more.  I'm ready to start really caring for people again as my daily work.  So I made another big ask of my group, and again they said yes.

Starting in May, I'll be working in the ED full time and only filling in at the urgent care sporadically.
I'm hesitant to even tell anyone about it, much less Formally Announce it.  What if I somehow mess it up?  What if I hate it and change back?  I've even minimized it in my own mind, a sure sign that it's actually a big deal but I'm afraid of the change.  But people are meant to share happy events in their lives, right?  And I'm happy, so I'm sharing.  Don't get me wrong; I'm terrified to invest, to commit.  It's hard for me to take this emotional risk.  But I think it's time.

I think.

Maybe.

Tuesday, March 20

Tired.

It was so hard to get my sorry self to work yesterday. I had the flu a couple of weeks ago - I don't recommend it - and the cough and fatigue have lingered. I entered this stretch of shifts feeling sluggish and still a little short of breath. My coworkers cracked good-natured jokes the whole weekend about how I needed to check in as a patient. Considering I've spent most of the last two weeks first feverish and vomiting, then alternately passed out and hacking up a lung, it felt more accurate than amusing. I'm pretty tired.

The more I thought about it, the more I felt like I've been tired for a lot longer than just this illness, though. There is always something, something that needs doing, that needs my attention, that needs my time and energy. I'm busy. Aren't we all? Being an adult is at least partly about being tired all the time, it seems. I started to think back over the past ten or fifteen years of my life. When did it start? When did I truly start to feel ready for a nap at the drop of a hat? Medical school? College? High school? I patted around in my memory, searching as one searches for a pen in a drawer, picking up and discarding memories in turn as I went back through the years.

And there I ran into a mental roadblock, because I was abruptly reminded that things used to be so much worse.

By the time I was eighteen I was not just physically exhausted but personally depleted, worn thin by the suffering I'd endured and the heavy burden of hatred I carried. Tired doesn't even begin to cover it. Those of you who did not suffer at a young age don't know what it does to the core of you, and I'm glad for you, because it is a horror. I was trapped in it, unable to progress, unable to stay where I was. I spent most days at the edge of crisis. I am aware some people manage to live their entire lives this way. I am also aware some people take it upon themselves to end the pain however is necessary.

Then, the Lord.

The Lord pursued me, called me, healed me. He stole into my heart as a dawn breeze warm with the coming sunshine. He lifted my burdens and replenished my soul. He ended a struggle at the deepest level of me that I didn't even know was going on, one that was with Him, and He won, and in the losing so did I. He gave me Himself, and He was everything I barely knew how to want but craved more desperately than my own breath. I thought back to that incredible first day with Him, and I felt the warmth of that dawn again, and I remembered that I live my life in the daylight of His presence. What joy there, and here, and now - even now, feeling the effects of sickness and long hours.

Yesterday morning the Holy Spirit reminded me that I am never alone, and that I never have to feel that kind of tired again. He is with me always. I am with Him. And He restores.