Getting Out

 "...and I don't think it was the idea that I would miss him...Sometimes I think I was afraid that without him my life would just be the same, or even worse, and I would have to accept that it was my fault.  And it was easier and safer to stay in a bad situation than to take responsibility for getting out. "

    -"Beautiful World Where Are You"  Sally Rooney

In the past, I have felt and stated that my biggest fear is being alone.  Looking back, that actually seems quite odd to me, because there are so many lovely facets of being alone.  

Alone, you have a blank slate of interactions.  You can choose your input more precisely.  You can manage and enjoy your time without trying to cooperate with someone else's version of alone.  Can you actually also be safer being alone? Safer from the deep hurts that tear at your soul if you let someone else in to muck it up?  

Looking back, maybe I felt afraid of aloneness due to cultural expectations and teachings that existing alone translates to existing in failure.  And I do not like to fail.  That is an exploration for another day. 

I've swung far to the other side of the pendulous arc at this point in life.  

Threats of leaving me from M. used to hold tremendous fear and desperation to change anything I needed to just to convince him to stay with me.  Was that old habits?  I think I actually felt for a long time that I needed and wanted him so deeply that I agreed to start making concessions and burying my own desires out of sight so they would not continue as temptations to contradict his.  It would have been nice if they'd lined up with his, sure, but increasingly as I lost sight of mine, they didn't.  I suppose desires need to be nurtured and defended against competing demands.  I did the opposite with mine.  

Threats of leaving recently illicit a longing for him to fulfill them.  

Even these last couple days with us mostly avoiding each other and him presumably having time to consider our situation, he is not making the magnitude of concessions that my past self made to his threats of dissolution of us.  He's continued to game, sleep odd hours, order DoorDash (even from a place he knows I dislike, so didn't order me anything), and leave dishes for me to clean up.  More than that, though, the behavior of dissatisfaction and offence seems so habitual that I'm not sure he can change it. Complaints about the state of the crowded refrigerator replayed.  Anger and irritation replayed when G. got in touch with me instead of him and when I checked on him to talk, he was laying on his couch in the dark so I assumed (incorrectly it turns out) that he was asleep. 

One of his latest additions to the litany of his irritations and criticisms is accusations that I'm "poisoning our daughter against him."  I'd faded into passive listening mode at that point in the shouting, but that brought me back into sharp awareness, "No!  That's all you."  He didn't hear me of course--with his ears maybe--but definitely not with whatever part of him chooses to actually hear and believe that another person might have a valid thought.  

Surprisingly, yesterday after storming back downstairs after G. had to go before he could talk to her, he more calmly appeared to retrieve the DoorDash burger and fries and then cared to check in to see if she felt better after her tummy ache earlier in the day.  He ate at the table, asked what I'd done that day, and then questioned why parts of it took so long in a tone that told me he felt displeased by my choices.  I'd spent hours at the Farmer's Market writing and thinking and listening to the music and eating some of my favorite goodies.  I guess he thought I should have been available to him when he woke up late, waiting for him, wanting to spend time with him.  

I'm starting to see the gaps here.  I've felt that success for us looked like him not being upset or angry about something.  I'm realizing that when I told him where I'd been yesterday, it might have occurred to him to ask if I'd enjoyed it, what the music was like, if I'd seen any friends there, what I'd been thinking--so many possible questions to show interest or care, maybe even concern.

I've expected too little.  "And it was easier and safer to stay in a bad situation than to take responsibility for getting out."

Spectacles (so many formatting problems!--sorry)

My eyes have started age-related changes so now I wear

purple spectacles usually askew on my head and see

everything blurry up close without them. Perhaps it’s

made me turn more internal to see and process all the

visions inside instead of outside for these past 15 years

in medicine and moming and wifing and lifing.

  I feel somehow now like I’m about to implode inside

though nothing looks different externally

(except perhaps the spectacles). 

Working in this small town and living here,

I see story bubbles above the heads of those I

know and imagined ones above the heads

of those I don’t.  “She has a disabled daughter

and her husband was the love of her life and

her helpmate through all those challenges. 

He died last year from brain cancer and now

she’s in this life-time of caregiving alone.”

“He feels hollow inside despite going through

all the life motions masterfully.”  “She has

cancer.  We’d been looking for months.  And

despite my feeling in my clinical gut that she

had it, a scan that I thought would show it did

not, so we spent time looking for other

causes and then circled back to find the cancer

I’d originally suspected.  I’m not sure she’ll

make it.  I wonder if I should have followed my

intuition more despite the negative scan.” 

“They have just lost a pregnancy.”

Not all of it is dramatic. “He’s allergic to bees.”

“She has high cholesterol but refuses to take

medicine, so far.” “They are anti-vax.” 

The stories accumulate and begin to overlap with others."
"She’s drinking too much alcohol and I only know

because her husband is also under my care and

told me in confidence. “He’s struggling with

sex-addiction and his family is reeling from the

struggle of acceptance and anger.” There are stories

everywhere.  Those I don’t know, my busy mind

can imagine.  Though I would prefer the thoughts to be quieter. 

It gets to the point where I pull back from the stories and

wonder what actually matters among all of this. I feel

adolescent and existential and angsty.  I don’t know

where to take it or who to tell, if anyone. The restlessness

inside though makes me want to scream while I greet

everyone with the same smile everyday.  Everyday,

the same. What will quiet this?  A new challenge?  A move? 

A deeper internal examination?

I no longer have the luxury of isolation.  I can’t withdraw

without hurting people who love and need me.  I can’t

leave without the tower of our lives crumbling. 

Decisions now have a wider ripple–a closer ripple that runs into the future. 

I’m unhappy with the direction our marriage has taken. 

I don’t want to live out this path on its current trajectory.

  M now barely leaves the house and balks at any change

or suggestions to alter our course.  I ask what he wants in

10 years and he says he’d like to maybe be writing a book. 

Which he’s said for the past 14 years.  He says he doesn’t

have time, but he games for 10-12 hours per day most days. 

I don’t understand the balance nor the choices.  Addiction

throws all logic off-center so perhaps that is it. 

I’ve learned that when a patient has a story that is rumpled

and disjointed and confusing, they eventually confide that

they have an addiction problem.  Alcohol, food, cocaine. 

The addiction pulls everything into focus.  Then it makes sense.

  All the bad decisions suddenly seen through the lens of

the disease are comprehensible.  

Is that what happens so close to me that I can’t see it–or am

too resentful and frustrated to admit and address?  He reluctantly

agreed to see a couples therapist, so this should  be interesting. 

He blames me for many problems and I’m certainly not blameless.

  Nor am I alone in blame.  And actually, blame does not even

seem to be a useful emotion.  Like guilt–useless.  

I try to learn compassionate communication.  Come to the

conversation with genuine curiosity of what the other person

is thinking and feeling.  I practice all day long with patients

and friends.  At a little distance, it’s easy.  Too close, though,

and it gets blurry and indistinguishable from myself and

I don’t have spectacles to bring that anger and discontent into

a focus that is connected with a cause that I can solve.  

I’m tempted with what I know are bad decisions as a portal

to excitement.  I feel vulnerable to these choices because

the current state of being does not feel right or full or meaningful.  

Relief

I felt it when I disembarked from the plane coming home from Ohio long ago.  I feel it again now.  Not all the same, but like a sudden ability to breathe again.  Like a hot shadow falling further behind.  It’s still close now, but the fact that it feels so good to even think about leaving it seems telling.  

Adapting to situations that become more and more untenable is a gradual process.  One doesn’t realize the little daily oppressions until they stack up or are put in sharp contrast with something else.  Or unless good friends help you see.  

Just walking around today away from the house at the farmer’s market there have been dozens of little guilty confining thoughts that I can start to practice dismissing.  I was able to buy produce without worrying that he’d say there was too much or “The fridge is too packed.  Where do you think that will fit?”  I didn’t think about needing to get him something for lunch that he would then likely critique and then say something like, “But thank you anyway for trying.”  I do dread having to go home to whatever awaits there.  I know he will try again to convince me that I’m in the wrong and all his behavior is my fault for neglecting and not validating him.  

Certainly, I’m not the most attentive wife.  I do like my space.  I do like my own time.  I do enjoy going out with my friends or alone.  I do also, however, find it discouraging to go back to him over and over to try to get his attention to be turned away at least 8 times out of 10.  Some of which he would not even see me standing near him as he was so focused on his current gaming situation.  I’d just turn and go back up the stairs to wait until he was between games or ready to interact.  

There seems to have been a lot of waiting, actually.  Waiting for him to be rested, fed, the perfect temperature, nothing sticky for him to see or accidentally touch.  Nothing to make his hands rough or dirty.  

Every once in a while, more often lately, he will show me his hands, holding them out and looking down at them, turning them over, smiling, “I mean look at my hands.  Feel them.  They are pristine.”  “Yeah.”  I’d smile, thinking that is exactly the opposite of what I’d like in a partner’s hands.  I’d like them dirty with life, rough calloused, with helping outside, blistered from shoveling, splinters from the wood chips, dirt under the nails, cuts healing. Hands to be able to both hold onto life without being disgusted with its stickiness and heat and general discomfort.  

Hands to hold onto me even when I’m sweaty or wet or hot or sticky or dirty or covered in tears.  I don’t want pristine hands to hold me.  His are hands that spend thousands of hours caressing a plastic mouse, clinking passionately on a lighted keyboard, tracking behind eyes focused on a screen and ears listening to sounds of digital death and destruction.  

At the expense of mine.  His hands can be like that because mine are not.  

It’s been a thousand tiny heart-mincing slices.  Some small, some bigger.  Added up feeling pulverized into a shape no longer recognizing the frequency of the insults to the once living tissue. 

The times I’d ask him to go places and he declined with excuses of fatigue, or overwhelm, or anticipated displeasure in my company.  The times I’d come home after work to silence of him sleeping and our daughter staring alone at a screen.  The times after that when he would complain that she spent too much time on the screen and that I should monitor her more.  He’d gone to sleep because he knew I would be home and could “take over.”

The Tuesdays that he looked forward to my day off so I could be with Genevieve and he could have hours of uninterrupted gaming sessions without having to worry about obligations.  The hundreds of take out meals he ordered because I hadn’t done the dishes so he couldn’t use the kitchen, or he was too tired or out of it to think of anything to cook.  Stacking up on the DoorDash bills.  The groceries he ordered online then complained when he messed up or they got it wrong or texted him too many times with questions during their collection.  The eight bags of potatoes he ordered accidentally then expected me to clean up the consequences on the cluttered counters.  

He is so upset with the messes that we make.  More important to him to have a tidy house.  “I have asked you 1000s of times!  The house like this stresses me out!  I have tried to adjust and put up with your messes but I just want a little consideration.  Just a few things kept tidy.  Is that too much to ask?!”  Followed by a retreat downstairs for hours until he’d reset himself somehow and come up to sulk and wait for us to apologize or have cleaned something up.  “I dread the weekends you know–because you guys trash the house so bad.”

I think actually he will be far happier eventually living without us.  Or that’s the picture he’s painted for me.  I am a messy bother to him.  He suggested that if I can’t manage to keep up with my chores that we should hire someone to come in to “help me” a couple times per week while he slept or gamed.  

The more I stack things up, the more outrageous the details sound.  

To be fair, he’s done some sweet things, also.  He prides himself on giving perfect presents and he does hit the mark sometimes.  There are beautiful baskets for the garden and he did discover the amazing Japanese Garden knife and get me one.  

Though even then, I have not liked all the gifts, but I’ve chosen to pretend that I do instead of deal with his hurt feelings.  The giant rhododendron was lovely for a couple days and now I have to take care of it in a pot, or dig a gigantic hole and worry about it dying.  The glass perfume bottle he got me is beautiful, but I’m not sure what to do with it so it’s another item that fills up the house that is already so irritatingly full to him. 

He made us dinner countless times, arranging it nicely on the  plates he served piping hot, silently expecting praise and notice and floods of gratitude each time.  Irritated if we waited too long and they cooled so we could not experience the perfection of the meal. 

Maybe even the things he did for “us” were in some way for him to extract admiration from us.  That’s the old question if anyone is ever actually not making selfish acts.  I think some people do.  I think he doesn’t.  

In Scotland, I remember trying to covertly coach my family to not upset him and to pay him extra attention for any generous act.  Because the consequences  of his feelings being hurt would last for days and he would claim that he would remember those slights forever.  There would be no recovery, just a constant slow and gradual descent into disgust and anger. 

I don’t think he behaves this way with malintent necessarily.  He doesn’t see the extent to which if is damaging to those around him.  Yet, if you tell him about the damage, he also doesn’t hear you.  And what else is there to do?

I know his criticisms and particularities were not always this pronounced.  He used to enjoy that we would go for walks and I could make people smile.  Now he feels upset and jealous when they only talk to me and not him.  I don’t know why this has changed and devolved so drastically.  I tried to figure it out.  I tried to remind him who he was.  I tried to help.  I tried to sympathize.  All there seems left is to try to push him to figure it out himself.  

Three Pound Baby Now!

She's really packing on the pounds!  Her doctors and we would like her to gain a bit more quickly as she's only averaging 10 grams per days (about a third of an ounce) over the last week, but it's in the right direction overall. She uses a lot of her calories to breathe still and so the glorious day she spent on the nasal cannula instead of the the CPAP mask that covers her pretty little face was short lived. She'll get back there, though. 

What a day it was!  We walked in to find a baby whose face we could actually see in her isolette!  We had to check to see if it was really her.  We have also been getting to hold her now nearly every time we visit. I loved seeing her little face at last. Tiny perfect lips and button nose and she opened her eyes to the sound of her daddy's voice to look toward him.  She waves her arms around and wraps her hand around M's finger tips.  We both just kept staring at her in awe that we'd made this very tiny perfect little being.  

There is something biological about that moment when you get to really look at your baby's face and marvel at those small details and fixate on the growing roundness of her cheeks and her big eyes that are looking less like alien sized eyes below her high forehead.  She moves her tiny lips and makes tiny yawns and sneezes and coughs and cries and everything seems like it really will be okay.  

I had a c-section and was under general anesthesia due to the blood thinners I was taking (lovenox at the time) so did not see her when she was delivered.  I heard someone say that the moment their baby was delivered was the best moment of her life as she looked at her little wonder.  It was delayed for me, and maybe for M also, but I feel that now, five and a half weeks after she was born, we are getting more a glimpse of that feeling.  It has been more gradual in coming for me, not a thunderbolt of wonder, but more of a well filling with love for our baby.  

At first I felt afraid to let that happen as she seemed so little and her life so precarious. We would love her and give her all we could to help her survive and pray and hope to everything we knew to keep her with us.  We tried to stay realistic though and that included fears. As the fear subsides, the love and hopes replace it. 

Yesterday when we went in she even flipped her own head over; it was quite incredible strength for such a wee one (at least in the eyes of her flabbergasted parents).  Her nurse was also impressed.  She is strong.  Her doctors from the beginning have said that--our ob team especially. They wanted to name her something powerful.  In the days it took us to decide on her name we contemplated everything from Greek godessess to mythologic creatures to family names.  We ended up with a first name we simply liked and that leaves her future relatively free from teasing and name boredom.  Her middle name means "of the sky" in Latin.  M took Latin in college and she is celestial and strong. 

In fact, the day we went in to find her off her breathing mask, we saw a rainbow on our drive into the hospital.  And as we left we saw big post storm clouds glowing as the sun sank behind them.  They are connections to something larger I like to think.  She has had so many people loving her and praying for her in her short life that I believe all of that strength and hope and love and faith adds to her growth. It takes more than medicine. 

We have a Baby!

She is a little tiny baby and we love her. She was born three months early weighing 1 lb and 11 oz, thanks to lupus nephritis and preeclampsia and placental reversible flow, but she is all there in miniature.  We think she's perfect. She is over two lbs now and traversing her NICU course with just a few bumps so far.

PR over, though, it's been hard.  I'm afraid to hold her. It is an odd thing to be afraid to hold your own child--any child really, but especially your own.  I'm afraid I'll break her. I've held her twice in her nearly three weeks of life so far and she was having oxygen dips the first time and then got a little cold the second time even though she was tucked down against the skin on my chest.  She has a breathing mask and feeding tube and iv line in her leg and temperature probe and respiratory monitor and heart monitor attached to her little body.  Everything is so tiny.  Moving her from her isolette to mine or M's chest is an undertaking.  The cords get tangled no matter what the nurses do to prevent it.

Most days we just let her grasp our finger with her hand.  She likes to hold her daddy's hand so hard sometimes that the tips of her tiny fingers turn white as she squeezes.  Today he told me it is one of his favorite things now.  She also seems to like it when we rest a hand on her quietly.

I dreamt last night that I was able to take her around with me but she had been born via surrogate as I was incapable of carrying her and then I had to keep going to classes and she would be there already and she was on the desk of one and so cold she was nearly dead. It was a terrible dream.  I woke up upset and misdirecting my fears and worries.  It feels unfair to not be able to have carried her longer and to not be able to be pregnant without such medical complications for both of us.  M was afraid he may have lost us both, which was unlikely but not impossible.  We spent weeks before she was born in and out of the hospital with pregnancy scares and lupus scares.  I wish it weren't that way.  I wish I didn't have lupus.  I wish I could kick it.  Because now it's affecting more than just me.  Stupid lupus.

Appointments and hospital and hopefully meteors!

In the week since I've been home, I've had one nighttime meltdown worrying I was going to die.  My brother and sister-in-law were in town as it was my birthday and the day after our canceled baby shower.  They had their two adorable four month old girls with them.  Hard to melt down too much around adorable laughing babies so it was mostly just with Matthew. We ended up going back to the hospital as from what they'd told me at discharge pretty much all the symptoms I was already having looked like preeclampsia and I was afraid of a seizure and having strokes again as my head was constantly throbbing like it had been five years ago when I'd ignored it for too long.  And between the pregnancy hormones and the prednisone and the stress catching up to me, I was a mess.  Ended up that everything was okay on that visit, though blood pressure still on the high end.

Then kidney doctor follow up on Tuesday (added blood pressure med, labetelol) and gave me his cell number as I realized I sometimes just needed to have someone to help manage everything who was not myself. The rheumatology appt with the new rheumatologist was on Wednesday (went over the plan for prednisone: high dose for a month since we can't use cellcept and then taper 10 mg per every two weeks after that).  OB was on Thursday and my blood pressure was still elevated.  Then Friday I was excited to stay home and rest and get some of the tension out of my neck but I woke up with bleeding and we had to go to the hospital again.  It was partial placental abruption and we got to come home, but when I first saw it i was afraid of miscarrying and could not feel the baby kick right away.

My first emotion was disbelief then fear then anger--like we needed one more thing!  I didn't want to go back to the hospital.  I didn't want to have to drag Matthew to any more doctors' visits.  We just wanted one day to be kinda home and normal.

Now it's Saturday night and I've been on "modified bed rest" (I don't really know what that means) all day and am feeling fine.  At this point every day is a gift and helps our little one grow more and hopefully gets my kidneys closer to healing.

Our dogs keep me constant company and I love our house's big windows that look out onto the redwood forrest around us.  It's a good place to be and good place to recover.  The worry about getting back to work and my patients and money and disability and all that waxes and wanes and I'm crocheting more and watching tv and reading.  I'm trying to relax.  It's good for me and fun to hang out with Matthew.  We sorted walnuts with mom this morning.  It was a good day and I'll take it!  Tonight there is supposed to be a great meteor shower we can watch from our dark back deck.

Here She Comes Again

I wish it were my best friend's girl but it's really Little Red Riding Hood's grandmother again.  Indeed--the wolf has resurfaced with a vengeance and the 27 week and 3 day old baby inside of me is likely both the cause and the one in the most danger.

It actually started about three weeks ago with swelling in my feet.  Normal for a 24 weeks pregnant woman having acknowledged that me and the little girl just passed the point where we would have resuscitated her in the NICU had she been born then, right?  But it seemed excessive swelling and when it spread to my face I had one night of flashbacks to the prednisone moon facies of five years ago with he initial lupus diagnosis/treatment but I've been off the steroids for 18 months now--ever since Matthew and I got married.  And then the next day it started around my eyes.  Periorbital edema is never a good thing.

Matthew and I went for a walk along the ocean where they'd closed the street to cars.  We watched drummers and zumba dancers enjoying the lovely day.  We passed a yard sale with lots of baby items on the way back to the car as I tired to explain oncotic pressure and how the I was worried the protein in my blood was off because all the fluid was leaking into places it did not belong.  I'd decided to get checked out at this point and in my mind escalated my care from stopping by my closed office to dip my own urine for protein to contacting the OB on call for advice and likely a meet up at the hospital.

At the local hospital, they put the baby on the monitor (the first of many over the subsequent days) and she looked good.  My urine was full of protein but my blood work looked okay overall.  Lupus is most severe when it affects your kidneys, which is often first manifested by blood or protein in the urine. I'd never had problems with my kidneys and was pretty pleased with that fact--always quick to point it out whenever I told someone about my disease.

In obstetric land, however, protein in the urine, swelling, and the fact that my blood pressure was also up is preeclampsia until proven otherwise.  And being still in our second trimester, I learned that it would be severe preeclampsia by default.  They wanted to have me collect a 24 hour urine sample to quantify the amount I was spilling.  I collected my jugs and urine catching device and was relieved that I could keep in on ice instead of in the fridge.  I'd warned Matthew that the latter may be the case and he, as always, made me feel better about this among the many insecurities past and in our near future.

I was off work due to the swelling and urine collection and dropped off the urine to a grumpy woman at the hospital just before closing time on Monday evening.  She assured me that the results would be ready for my office visit with my normal obstetrician the following day.

5.7 grams of protein spilled in 24 hours.  "That's a lot," I responded with muted shock when she told me.  "You're need to go straight to the hospital and they are going to transport you to Stanford by ambulance or helicopter," she responded with her hands clasped in an illustrative prayer that Matthew had picked up on when she first entered the room.  She had to say it a few times for it to start to sink in and even then we were in a fog.  Then my mind started spinning. The baby might have to be born today--way too early.  Or I could have a seizure.  Or my kidneys could be failing.  Or I could die.  We both could die.

But no time to worry then, we had to get to the local hospital where they delivered fetuses only over 28 weeks. I had to be "stabilized" for transport.  This ended up entailing an iv start, a urinary catheter, the first of two steroid shots that would help our baby's lungs mature by 24 hours after the second shot (if she would just stay put for 48 more hours we'd have that advantage at least), blood draws, blood pressure every 15 minutes. A patient of mine was the ob nurse; she definitely had my back.

Matthew couldn't ride with me in ambulance.  They would not even let me scoot to the stretcher, but had to lift me.  The magnesium was making me feel awful, red and hot and dizzy on top of my swollen and tired.  Someone told me later that a woman who'd had it had described it as feeling drunk in a sauna--sounded pretty accurate to me.  It was the worst of the many medications I would have over the next few days, far worse than the steroid butt shots that they warned me about.  At least those were over fast.

I was strapped in the transport stretcher like my little adorable twin nieces get strapped in their car seats.  The transport nurse and the two paramedics hovering and moving ivs and collecting all the data they could.  I warned them that I get carsick and she gave me some zofran prophylactically as the drive would involve a windy hilly road and I'd be looking out the back of the ambulance.

We got to Lucile Packard Children's hospital around 6pm I believe. My mom had started driving as soon as we found out we had to go there and she'd made good time.  She was at the front desk when I rolled in. Matthew was on his way with the car and had stopped at home to get clothes and phone charger and stuff for potentially either a long stay for me or a long stay for baby or both.

I was in the labor and delivery ward that night and since the baby was so little she'd swim away from the constant fetal monitor all the time and the nurses would have to come readjust it. I tried to sleep some after mom and Matthew's parents had left but it was pretty impossible.  I did marvel at him sleeping in the plastic recliner chair that kept trying to close up on him.  I think there were more blood draws that night.  OB on call came to assess me.  Anesthesia resident came in to talk in case we had to do a c-section.  I told him I had strokes five years ago and he wrote "thromboembolic" which I told him was wrong and they were venus, but he just underlined the word.  They said that they'd spoken with the nephrology (kidney), rheumatology (lupus) and the maternal fetal medicine (high risk ob) doctors on call and they would all be by to see me tomorrow.

I was awoken early (must have slept some) by a med student on the ob service who never did introduce herself over the next several days as she hovered and scribbled notes in her little book and asked if I had headaches or vision changes or epigastric pain.

We were transferred to the antepartem ward the next day since I did not need to deliver overnight and was looking more stable and could come off the magnesium (hallelujia!).  And their beds were much better.

Mom and my wonderful in laws showed up and we proceeded to entertain our long line of guests.  I was familiar with the repeated rounds and teams of teaching services and tried to be patient with retelling the story and my history several times. It went faster given my fluency in "doctor speak" and I was very impressed with the communication between services and coordination of care.  The main differential was preeclampia vs. lupus nephritis.  If the former, I would stay until delivery (potentially months as I remembered vaguely the bored women I'd rounded on eons ago in my high risk ob rotation in med school). With the latter, I could potentially go home.  I wished for the latter without really thinking much. "Come on lupus!" just seemed like an odd war cry, especially when it would necessarily involve my precious and heretofore unsullied kidneys.

We had not entered into the pregnancy unknowingly.  We knew I was high risk, but most of the concern had been focused around the clotting disorder I have also: antiphospholipid syndrome (or lupus anticoagulant) and I'd been taking the blood thinner shots daily as directed, along with the plaquinil that was supposed to help and I tolerated well. We'd consulted with a lupus specialist at UCSF and a Stanford MFM.  The risks for preeclampia were higher (which did give me a week of sleepless nights after we saw one ob for the first growth scan and he walked in not knowing my history but got increasingly dire as it unfolded for him).  I don't remember having the risk of nephritis on the radar as much.  Premature labor was a risk.  But I kept thinking of the old adage of lupus pregnancies going one of three ways: 1/3 better than normal, 1/3 same, 1/3 worse.  I wanted to feel lucky. And we wanted a baby, or a few.

Back in the hospital, feeling once again the "interesting patient," They'd decided to treat me for everything still (preeclampsia and nephritis) which mostly involved large doses of iv steroids planned daily for at least three days.  They would also do a renal (kidney) biopsy on my third day there.  I remembered the one I'd done on a teenager with lupus at our Children's hospital in San Diego.  It wasn't the worse procedure ever (or so it seemed) and I knew how important it was to figure out what was going on exactly.  We would have a fetal growth scan that same day and a renal ultrasound the day before so I tried to focus on them instead of the long needle I knew would be going into my left kidney. They tried to figure out how to position a pregnant woman for the procedure.  I assured them I could lay on my stomach if the still unintroduced ob med student didn't tell the rest of her team. A 26 week along belly is not that big.  I knew it would be one of the residents or fellows doing the procedure and didn't want to add any more positioning complications.  At least they would do it under ultrasound guidance.

And so it went along.  I was not sleeping much as they'd restarted my old buddy the heparin drip which once again was requiring blood draws every six hours and my hypervigilence at patrolling the frequency of meds and blood draws and coordinating meals and trying to sneak in a shower with my iv wrapped in a biohazard bag and as discretely as possible providing them with the stool sample the needed prior to the heparin.  I was not really supposed to get up otherwise.  Matthew and I would watch some movies before bed. His crazy fold up couch bed was better in antepartum, too. They had one station that just played a bunch of pictures of puppies.  I'd mess around with my phone or try to read the books that my in-laws had bought for me and visit with them as they came and went with updates on the contents of the cafeterias and the haps in the nursery down the hall.  I'd make lists of questions in my head and try to make sure they clumped as many blood draws at possible together.  It was a Children's hospital and the phlebotomists were very very good but I still dreaded them.  I got to order room service when I was hungry and they would bring afternoon snacks of egg salad sandwiches or chocolate covered strawberries.  The day after the biopsy the nurse even put a note on my door and stood guard so I could sleep for a few hours.

The biopsy itself went as well as I'd expected.  Matthew got to sit by my head as the nine other people crowded into the room.  The nurse had taken pity on me before she shipped me over and given me a dose of fentanyl (favorite drug of the whole experience as I was able to relax for a little while as it was metabolized way to fast for my liking).  The effect had completely worn off, unfortunately, by the time of the procedure since the radiology tech was also in training and was therefore much slower than her teacher.  The biopsy team was mostly the nephrology team with the nervous resident/fellow procedure performer as I'd suspected and the radiology team along with the ob med student. I was on my stomach as I'd planned and could not see what was happening, though they did kindly demonstrate the sound of the rapid fire punch biopsy device: "ka-chunk!" I knew they would numb the area and the lidocaine would sting and they cut a hole in the skin with a scalpel and then go in with the biopsy gun.  They didn't tell me when they were starting though so I was just sitting there waiting listening to the attending telling the resident/fellow to make the sterile area larger.  Fortunately Matthew could see the whole thing and warned me before the lidocaine and as they checked for adequate anesthesia.  Matthew said she was pretty shakey and nervous and that the interventional radiology attending ended up basically holding, alighning and checking the angle and position of the gun and all the resident would do is reach in and push the button. "Ka-chunk!"  They'd said it almost always took 2 biopsies and they would check them quickly in between to make sure they had what they needed.  I prepared myself for three passes just in case.  It mostly was a startling feeling with some referred shooting pain to my hip.  I tried to stay still as they collected the three biopsies and verified them.

Back in labor and delivery recovery area, a cardiologist specializing in Marfan's (a connective tissue disorder) came to consult on me because my rheumatologist in Santa Cruz had mentioned it in one of his notes as a possibility and it had become some sort of outstanding chart lore.  I'd had a heart ultrasound four years ago for pericardidits in San Diego and all was normal there.  The most serious and consequential ramifications of Marfan's are problems with the heart valves and aorta, neither of which I had. I'd told several people this by that time and yet here was this cardiologist tearing himself away from the baseball game (Giants winning?) to have me bend my thumbs back and check my heart with his ultrasound the size of a flip out smart phone. He determined I didn't have Marfan's.  Great. I was irritated at this point that anything else could possibly need to happen.  Didn't I have enough going on?  I needed another chronic disease like I needed a hole in my other kidney or a fork in my (well connected) eye ball.

The nephrology and rheumatology teams all reviewed the kidney cells over the next day and, while the  pathologist would not finalize the interpretation for three more days, it was looking quite convincingly like Class 4 Lupus Nephritis.  I'd spent part of the previous sleepless night trying to re-learn the different classes.  One of the results that was most concerning to me was whether it was acute (ie would likely recover to full normal function) or chronic (with scaring of the kidneys that would not return to normal).  It looked to be acute, though it did involve greater than 50% of the glomeruli (basically the kidney's filtering sacs) and they inflammation was pretty severe.  "Go lupus!"

Now the big question became how to treat a pregnant woman with lupus nephritis as the medications they normally would blast me with (immunosuppressants) were harmful to the fetus.  The nephrology team did a lit search and then a very nice rendition of narrowing down the options.  Turns out azathioprine and high dose prednisone are the winning combo for now.

And...once I started putting the timeline together, I figured out that if they just moved up my last dose of iv steroids, we could maybe go home that very night!!  The teams all agreed and when the last hold up was just waiting for my prescriptions for home, I offered to call them in for myself the next day (all the schooling gotta count for a few perks!).  Three or four of the team members called to make sure I had all I needed the next day, including the OB attending who had done our growth scan and who apologized for the delay.  Turns out they'd had one of the worse c-sections of her career and a generally horrible night.   I can fully understand why my prescriptions were not at the top of their to-do list and was just glad I had resources to have already taken care of it myself.

The shower at home without the iv line was heaven.  I had sticky grey patterns on my skin where various things had been taped to me.  I was too tired to take on the biopsy bandaid then and didn't find another little bandaid on my butt for another couple days.  When I'd decided that bed sounded better then the shower, I went to get out and found that the shower door was stuck with me naked, wet, pregnant, still flushed red and swollen.  Matthew was downstairs and I could have yelled but it looked like it was just off its hinge a little, so I pounded on it until it came loose and just left it leaning askew against the wall as I got into my new favorite blue flower and butterfly pjs and crawled into our own wonderful bed where I could sleep next to my sweet husband instead of just having his head at a 90 degree angle from me.

The door actually works way better now that he's fixed it.

Happily Ever After

Things have changed a bit in the time since I last posted. I feel like I'm in the "happily every after" part of the Great Beyond now.

I ended up not taking the job I'd accepted in San Diego. Instead, I'm working in a clinic in Santa Cruz. My last name is different. And we hope to have the keys to our new house in less than a month. Happily ever after, indeed!

Not long after that last post, I decided to get a hair cut. I'd had the same long straight hair since...second grade. It went through various stages of dead ends and disrepair as I'd go a year or more without time for a haircut. I decided it was time for a change. After all, I was about to start my career after residency and maybe I would have time to blow dry it and get it cut a little more often. Maybe, in short, I would have more time to take care of myself. One could only hope.

So I went to a salon highly recommended by Jane and told a petite asian woman with perfect long stylish hair to "fix me." She was an artist--a stylist with all the vision I lacked for my locks. After over an hour, I came out a new woman (or at least that's how I felt). My hair was above my shoulders in a shallow a-line. I had bangs (actually "fringe") brushed over my left eye brow. They'd done my make up and sold me the products I would need to maintain the new look. I decided to go to the beach to celebrate.

From the grassy knoll over-looking the PB pier, I took a picture and posted it on facebook. The comments were copious and favorable and I was feeling smart and strong and pretty again over the next couple days.

One of the last comments was from a friend of mine from my UCSC Dante Seminar class. He suggested that I needed to start a whole new fan page for my haircut.

I got butterflies. He was one of those men about whom I'd always wondered. He'd offered support from afar (Taiwan where he taught english for two years) via email when Mike and I were struggling. We'd exchanged maybe an email per year on average in the ten years since we'd seen each other. I remember having a crush on him in the confusion of college romances.

I researched him on fb. He didn't have any pictures of himself posted. He was teaching special education high school students back in Santa Cruz again. His profile picture was of a beach. I started to have a crush again.

I messaged him. We resumed esoteric discussions and caught up on the paths our lives had trod. Though I did enjoy the depth of the intellectual conversations, I knew I could not sustain that all of the time. I remembered he'd been equally as nerdy as I in college and started to think it was nice that we'd reconnected but long-term I could not constantly inhabit such an academic space.

Despite this, I had started incessantly checking my email and fb messages hoping he'd responded to my long daily responses to his long daily responses. One afternoon, I found a short message from him: "I was just thinking about you and wanted to say hi: Hi! :-)" I breathed a sigh of relief and thought we might have something after all.

At one point, he'd mentioned that if I was ever up in the bay area again (I'd been up to visit friends several months before), we should meet up for lunch. As our email correspondence continued, I started to figure out soon I could plan a trip up north. And in the meantime, he suggested that it might be nice to talk on the phone instead of only writing. We set up what would be our first of many "phone dates."

His voice sounded the same--deep and comforting and still familiar. I was nervous and talking fast. I felt myself slow down as I listened to him and a calm orb started to glow in my chest. At one point, I quoted "Anchorman" and he later told me that was a big points-winner in his book.

We talked twice more on the phone before I went up to see him. Actually, Jane and I had originally planned to road trip up together on Memorial Day Weekend 2010 and see him and visit other friends and hang out in Big Sur. Jane decided to go to the Strawberry Festival with my mom (I think she was actually wanting to give me a chance to spend time with M). When I told him, he asked if I was still planning on coming, though. I wanted to. He said that perhaps he should play it coy and not act too excited about it, but that he was really looking forward to seeing me.

By the time I flew up there after leaving early from our med-peds annual retreat where my two male fellow residents who has witnessed the destruction of my previous few relationships had grilled me about this new prospects suitability, I was Nervous (capital N). Would I even recognize him? Should I hug him? What were we going to do all weekend? What if it didn't go well? I wasn't even sure he would have a place for me to sleep since he'd confessed recently that he'd been sleeping on a couch the last couple years. (Though he said I didn't need to bring a sleeping bag, "There will be a place for you to sleep.") Oh boy. And, Jane and mom and Colin and Becky were all out at the Strawberry Festival out of cell phone reach. I was Nervous.

He met me at the airport and I did recognize him (and he still looked as handsome as I'd remembered--if not more so). We did hug. Over the weekend we: went to Ikea, ate at Taqueria Vallarta, ate at Zachary's, hiked Natural Bridges (he slipped once and I helped catch him--the first time we touched hands), listened to music, talked, walked his dog, visited his classroom, and started to fall in love. And I did have a place to sleep. He'd bought a king-sized bed and new sheets and was really sweet when he showed it to me and said he wanted me to be the first one to sleep on the sheets.

I wasn't still wasn't sure he was romantically interested until we were sitting on the couch the second night I was there and he took my hand and said, "So, Miss S, what should we do with you?" I snuggled up to to him and cleverly said something like, "I don't know." The music started to skip a little later as we were talking and he didn't want to get up to change it and end that first hand holding.

Needless to say, the weekend went well. He drove down to seem me a few weeks later, with many long phone conversations in between. Bryce told me I was a like a teenage girl again, but not really again because I'd never been that giddy and obsessed with phone calls as a teenager.

I flew up a couple times more. On my second or third trip up, I decided to start looking for a job in the area. He felt committed to finishing four years with his students at least and I was in transition anyway. And we knew then we wanted to be together. I asked him at one point, more for realistic argument than anything else, if I should get my own place when I moved up. We both thought it was a silly idea.

He planned a trip to Kauai for the last week of September, 2010 and we spent a week snorkeling, hiking, looking for sea turtles (in vain) and enjoying our fancy four-pool resort and frequenting our favorite breakfast spot. On the day before we were scheduled to come back, we were swimming under a waterfall and he asked me if I thought it would be a good place for me to ask him to marry me. I got pretty bashful and think I said something oh-so-original as, "Really?!!"

We flew back to LA all giddy and engaged and stuff. Mom and Bryce met us at the airport and gave us my car which I'd already packed before I'd left for Kauai. We'd planned to drive up to what was soon to be our first place before we started out on the trip.

Ten months later we were back in Kauai getting married on the Hanalei Bay Pier with by brothers in lilac shirts with man leis performing a hilarious and heart-felt ceremony (M had ordained them online with the Church of Life or something). Jane and Becky had made me a beautiful simple bouquet and everyone was taking pictures (though Jane was the official wedding photographer). Becky did my hair and she and Jane tied me into my corseted lace beaded strapless dress. The dress was everything I thought I hadn't wanted and too fancy for a destination wedding but ended up being totally perfect.

It had started to rain on our way to our first wedding site (a big lawn near a little green church we'd liked), so we decided on our plan B (which ended up being way better anyway). As we were a self-contained caravan of five cars with the two of us plus 19 guests, with M and I in the lead car with his parents in the back seat (his mom not super thrilled with my theme of premeditated lack of planning, though she loved how it all turned out in the end), we just made a u-turn headed toward the pier.

M. asked a portly man along the way how to get there and the man said there was no pier on Hanalei Bay. M's mom got even quieter in the back seat. M found it pretty quickly though (it did indeed exist as we'd visited in on our trip there ten months prior).

The wedding was amazing--simple and loving and beautiful. We all met at an Italian restaurant afterwards and M and I had changed in to matching blue boutique Bali outfits. Toasts were made and love was spread and food was shared.

We spent the rest of the week visiting with everyone going back to our favorite breakfast place and snorkeling with sea turtles. I did have to go to the ER two days after the wedding where the doctor there let me tell him what I though he should do (an ultrasound as I though it was an ovarian cyst and I didn't want the radiation of a CT). Ended up I had an ovarian cyst the size of a nerf football (which has since been removed laparoscopically this last October). The sickness and health part came in sooner than I'd expected! He takes good care of me.

Happily Ever After...to be continued!

Maps

The other night I dreamt I was seven months pregnant. All sorts of things were going through my slumbering head. Who was the father? Did I care really? Mostly I was worried that I had had NO prenatal care at seven months gestation and I was trying desperately to get in touch with one of my three Ob/Gyns (in real life I only have two), but it was Friday and no one could call me back and something seemed wrong. I can't remember now what. Just before I woke up, I remembered that I had been on coumadin (or warfarin--the rat poison I actually do take to keep the clots in my brain from growing) during the entire pregnancy. And that it is a teratogen, which means that it causes severe damage to fetuses--in the case of coumadin, usually bony deformities.

I awoke feeling anxious and strangely happy to at least be pregnant. I reached down to my abdomen but there was no swell of a seven month pregnancy. Just the disguised 6-pack from those sit-ups I've started doing again.

That dream lingered all day. I was in neurology clinic and a woman brought her five-week old and her husband. The baby was their third.

It was not the first such dream I'd had. I had a dream a few months ago that I'd given birth to a litter--literally five babies and that I hadn't expected that many and that my family kept trying to put them in the back of the pick-up truck to help get them home and I was unmarried and had no partner and beside myself trying to tell them that we at least needed to get car seats to strap in the back of the truck for the babies.

Another was about being pregnant also--two months that time.

A father to these nighttime deliveries never surfaces.

These next few weeks I'm on Ob/Gyn. Today was my first clinic back in reproductive-endocrinology-infertility clinic since med school when I rotated through one. This time I'm older, though. "You can't cure birthdays," my attending jokes. Very funny. "The female residents who rotate through here always get freaked out and get their FSH checked." How did he know? Anything above 12 three days before your menstrual cycles and your chances of conception are 3% per cycle, and half of those will have birth defects. Or something like that. I told him I didn't want to know anyway.

I lament this my age-related fertility and the coumadin and lupus and singleness occasionally. Today to my friend Karen, whom I have known since kindergarten, who has a husband and an adorable little boy of her own. She says sometime she wishes her life were different, too. Rarely, but sometimes.

Yes, we all have different challenges and goals and paths we take and have taken.

Now that I finally have my life somewhat back with a regular schedule, no more overnight calls unless I moonlight, a job contract signed, nebulous thoughts of training for a triathlon again (flat on the bike this morning and walked home barefoot), a puppy, new music to explore, time for more travel, I have thoughts of a family of my own more often.

I find myself wanting to say to the universe, "Hello Life! I barely recognized you. Oh how I have missed you. Welcome back."

The last patient of the day in infertility clinic was 35 years old. She was the only one there with her husband that day--some of the others having spouses overseas and there to try to get pregnant with their frozen sperm. The attending briefed me on the situation before we entered the room, "She has breast cancer. She's had her surgery and is ready to undergo chemotherapy. She's here to have her eggs harvested since she's not sure what will be possible after the chemo." I find out also that her tumor is estrogen receptor positive--or was--they'd told her they got it all out.

There is a question of whether or not to fertilize the oocytes (eggs) before preservation. There exists more successful experience with freezing them this way, but it raises the question of creating a form of life when the mother may not survive to grow them into reality. The couple doesn't hesitate to choose to freeze fertilized eggs instead of the unfertilized eggs. They seem confident that she will come through it well. Despite this her eyes start to well up a little when she asserted, "I want these embryos." Military families don't cry often in public in my experience. I watched her concerned husband and thought I could see fear in his eyes--fear of losing his wife, fear of no child in their future, fear of having to change his expectations. Fears--or perhaps those were some of my own fears shadowed onto him. I won't know.

On the way home from clinic, feeling distant and thinking dark uterine thoughts, I glanced up in time to see a bookstore to which my aunt and uncle had given me a gift card for Christmas. I like books. "Maybe this will undo my mini-funk." I pulled in and got out of the car by a tai bo studio with a homeless person rifling through bags on the back step and a barefooted man with boxing gloves blowing his nose in the bushes in front. I pretended I didn't see either.

The bookstore was new to me--and enormous as it wound its way back through the converted movie theater with the beautifully painted ceiling. I meandered by the gift cards--Mother's Day approaches, but mom likes the cards I make from my pictures best anyway. She needs a new address book since her ancient avocado green one continues to disintegrate but it makes more sense to just enter things into her new Droid for her. Easter stuffed bunnies are on sale and Sophie loves the one I got her last week--loves to destroy it that is. The kids' section is at the back and I move in that direction, recognizing authors and titles along the way, pausing at the pet section and noticing a title, "In Dogs we Trust." Really? I move on. The kids section has beautiful books from my youth. "Where the Wild Things Are." "The Giving Tree." But nothing that catches my eye now.

I decide to leave and walk slowly back toward the door, looking left I see maps. I like maps. They take you places. They provide guidance but don't insist that you end up anywhere in particular.

I like maps. So I turn left. The maps are accompanied by travel books; the Eyewitness DK books are my favorite. I look at the familiar format and see the ones I've carried with me overseas to their namesakes: "Italy," "London," "Spain," "Barcelona," "New Zealand," "Thailand," and the ones I've purchased but not yet delivered: "Greece," "Turkey." And so many more. None of the European or Asian destinations feel right this time around. I go to the other side of the bookshelf and see South American titles. "Peru" catches my eye. I want it. I remember the Mayan ruins we visited during my high school years when my parents were together and our family friend who was the only doctor I really knew was still alive and our families traveled together to the beautiful Yucatan peninsula. He died suddenly when I was in college. His only daughter is getting married this weekend.

I barely look at the "Peru" book in the store. It feels right. I'll devour it with dreams over the next weeks or months. Maybe I'll go. Maybe I won't. Either way, it will be fun to know I might--and that I can. Being without child does have its advantages.

Maps have all sorts of paths--and all sorts of destinations.