Why’d we bother?

As I stood in the shower this morning, lathering up that extra layer of flab I’m pretending is all the 8oz baby’s fault, my mind started to wander.  If I am truly and brutally honest with myself, I never thought I’d see this day.  For all the invasive procedures, the doctors’ visits, the support group cheerleading, the advocacy work and fundraising – I honestly never thought we’d get here.  Failure to conceive and maintain a lasting pregnancy had become the expected outcome; dreams of baby showers, bedtime stories, and school plays had long since ceased being something I visualized.  As that realization hit this morning, I found myself asking, “Then why did you keep going?”  This post is an attempt to figure that out.  And, furthermore, an examination of why I think this story – our story – is more the fault of our society’s medical status quo, than it is of my own damaged body.

First and foremost, treatments are what we knew.  Some go to the spa, some go out to brunch, I made 5am drives to the RE for a probe and a poke.  I knew where I’d risk getting trapped behind a school bus, I knew where the roads tended to be iciest, and I knew I’d get my bagel at the bagel shop on my drive home.  The power of routines is nothing to scoff at.  In a strange way, infertility and infertility treatments provided much normalcy and structure to my life.  As I dug through my wallet this weekend looking for an under-used store rewards card, I found the “frequent customer” card for that bagel shop 50 minutes from home.  I immediately wanted a bagel, wanted a stamp on my card, but realized I’d rarely have reason to go back.  The drive to my OB (and new MFM) follows a slightly different route than the drive to the RE.  I’ve had to learn new rest stops, learn new quick food options, learn new road conditions.  Not only has the adjustment been huge, but so has the unpredictability of its coming.  A sticky pregnancy has made me learn a new routine, and this has come long before the normal new parent routine changes we’re all conditioned to expect.

And, if the daily minutiae of infertility treatments were familiar, then defining myself through heartache and resiliency was its macro-level bedfellow.  Infertility gave me a purpose that my life was largely lacking.  I found some sense of self in my career, I enjoyed my friends and family, but when we started this journey I was, like most other 20-somethings, focusing on the things that life could give me, not that I could give it.  I mean, simple case in point, I wanted to be granted the gift of becoming pregnant, delivering a healthy child, and parenting that child for the rest of my life.  I wanted life to give me something.  For all I revere it, the act of procreating is most certainly selfish and driven by a desire to get what we want.  I don’t, in any way, think that should take away from the fact that determining when and how we reproduce should be a basic human right that we all get to work out for ourselves, but making mirror images of ourselves has an undeniable element of narcissism about it.  So, when infertility struck, I was so very, very lost.  Why couldn’t I have what I wanted?  Hadn’t I earned it?  Surely I earned it more than that terrible parent I saw in Target or my cousin who said “I do” all of thirty seconds ago.  Why was the world making me suffer?

I have no answers for any of those questions, but I’m at peace because I simply stopped asking them.  No, this post isn’t going to take a turn for “If you just have hope and baby dust” territory, but I am going to be fairly blunt about the fact that asking questions about why you aren’t getting what you “deserve” is just kinda masochistically futile.  You’ll never have an answer; there is no answer; life sucks, then you die.  K?  Somewhere along the way, right around the time of my suspected ectopic pregnancy in 2011, selfishness propelled me to something amazing.  Out of a desperate attempt to feel less alone, I went to a professionally-led RESOLVE support group.  Then a peer-led support group an hour from home.  Then, finally, I started my own.  And, just recently, I’ve become a peer-led support group coordinator for my state.  At the same time, relationships I established with faceless Internet strangers on an fertility-focused support forum, transitioned away from the anonymous forums to Facebook.  These women went from familiar avatars, to close personal friends and confidants.  In 2012 we signed up for our first Walk of Hope, and we returned again in 2013 despite moving far away from the walk location.  Though this little one’s arrival will keep us sidelined from the Walk and Advocacy Day this year, my thoughts (and some dollars and constituent calls) will be with the women and men who fill our shoes.  And, finally, following my last miscarriage, I started this blog and found a new voice on Twitter.  When we started trying to conceive in 2010, I was desperately seeking an identity as “mother.”  In that time, I’ve found an identity far different than the one I expected, but one that still fills me with just as much pride and sense of accomplishment.  So, why did we keep going, even when the hope was gone?  I’d convinced myself this wasn’t just my fight, and, with the help of countless women and men, I kept on trucking.

Finally, I just wasn’t willing to give up on my health.  What started out as a drive for pregnancy, quickly turned into a battle for diagnoses, treatment, and health.  Though by no means a universal experience, my infertility has been inextricably linked to my health almost from day one.  I pushed harder than I thought I could push to get my Hashi’s diagnosis, because treating my raging thyroid disease might help me get pregnant.  I demanded a PCOS diagnosis (and the Metformin/Synthroid combo that brought me to a weight I hadn’t seen since middle school) because doing so might help me get pregnant.  I marched into my REs office and insisted on laparoscopic surgery to diagnose my endometriosis because I refused to endure another assumed ectopic.  We drove 6 hours one snowy February morning for a 45 minute appointment with a Reproductive Immunologist to investigate my wonky immune system because I needed to know I’d done everything in my power to save my failing third pregnancy.  I’m bracing myself for April’s consult with a new rheumatologist because this little man deserves to have the healthiest mama he can get.  My health was always the elephant in the room keeping me from stopping treatments, even as my ability to sustain myself emotionally through all the failures precipitously declined.  Each miscarriage was diagnostic and every failed cycle provided more insight into what was wrong with my body.  No one should have to sacrifice their children in order to improve their health, but it was a devil’s bargain I’d become accustomed to.  And, it’s a thought that’s been on my mind a lot lately, and was a central theme of my counseling appointment today.  When there’s no longer a goal in site – when the dream of pregnancy and parenthood has been achieved – what will be left to propel me toward answers to my medical mysteries?  When I no longer find myself in a practitioner’s waiting room once a week, who will be tracking my progress or decline?  When the realities of parenting a newborn hit, will I have the ability or the energy to differentiate normal new parent fatigue from complete autoimmune misfire?  These questions are also ones not worth asking in this moment, but they’re ones worth acknowledging nevertheless.  I kept turning to infertility treatments because I was afraid of turning away from treatments that might improve my health and well-being.

So, finally, the crux.  Infertility and infertility treatments pose a risk to three aspects of your life: your emotional, physical, and financial well-being.  For me, the physical was surmountable.  The surgeries, the miscarriages, and the injections were worth it, as each one brought answers.  And, usually, the physical pain of infertility was nothing compared to the pain of living my life before becoming aware of and treating my health issues.  The contractions of my 9 week miscarriage were intense, but I was prepared for them after 15 years of endometriosis-related menstrual cramping that, prior to my first referral to an RE, had always been passed off as evidence that I simply had a low pain thresh hold.  The discomfort of recovery from two laparoscopic surgeries was worth it tenfold for the improved bowel function, pain relief, and sexual desire each surgery brought with it.  Taking as many as 25 pills a day in my mid-twenties was a small price to pay to regain a metabolism that didn’t translate a 1000 calorie a day diet into constant weight gain.  And, even fertility-specific medications like gonal-f and menopur were worth it since, for the first time in my life, they brought predictable-length cycles, and didn’t leave me anovulatory and searching for my period for 8+ months.

While I won’t be nearly so quick to pass off the financial as no great burden, I will note here that we were relatively “lucky.”  (And, it’s only through my close proximity to this community and my IF Stockholm syndrome that I’m even remotely able to describe our financial situation as “lucky.”)  My first insurance covered diagnostics, and, after a targeted national job search, my second insurer was required, by state mandate, to cover treatments and meds for everything up to IUI.  So, while it’s the one thing that we’ve never been insured for that has granted me this pregnancy – IVF – I was able to make my insurance work for me most of the time.  I garnered my diagnoses on the cheap, including a laparoscopy that we risked paying out-of-pocket for had I not been found to have endo.  I used my state-mandated meds/IUI coverage to stockpile extra meds for our IVF cycle.  And, we went to a clinic with some of the nation’s lowest prices for IVF when it came to that.  So, while we’ve easily shelled out close to $20,000 in the past 4.5 years, most of that is come in the form of co-pays and deductibles for insurance-covered services.  And, on top of that, we’ve maxed out (and promptly spent) our flexible spending accounts whenever possible to ensure those out-of-pocket expenses came pre-tax from our employers.  It could have been much worse.

Where the financial truly hurt us?  Where the physical really stung?  It’s where both intersected with the emotional.  The emotional toll was crippling.  The emotional stole our hope and joy.  The emotional made us decide that child-free was preferable to continuing to go around in the same circles again and again and again.  And, contrary to what you might initially expect, entities outside ourselves can be held responsible for this emotional toll.

Published in yesterday’s New York Times, Ann Carnn’s “Meeting the Cost of Conceiving” is a a relatively simple financial piece that isn’t all that groundbreaking to anyone that’s taken their turn on the IF roller coaster.  But, re-reading the article today, after first clicking over to it from RESOLVE’s Facebook page yesterday, I think that article is the reason I found myself asking this morning, “Why did we keep going?”  And, now, I can’t help but find myself rephrasing the question as, “Why did we get to the point where stopping seemed preferable to continuing on?”  My answer is hidden in bits and pieces of Carrn’s article.  In her awkwardly placed single-sentence closing paragraph reading, “Yet, just a small proportion of women who suffer from infertility use [IVF].”  In fertility specialist Dr. G. David Adamson’s opinion that, “Cost is a problem,” and, as Carrn’s continues, “not because I.V.F. itself is necessarily more expensive than other highly technical medical procedures […] but because most insurance policies don’t cover it.”  Each step along the way we were forced to ask ourselves whether we could keep it up, quite simply because the expectation of our insurers and our medical system was that we shouldn’t.  We kept finding ourselves asking at what point were we willing to trade in the routine, the identity, and the battle – the trips to the bagel shop, the sense of belonging to a community, and the path to improved health – for the path our employers, insurers, doctors, and government expected of us.  When would the emotional toll of being stuck in a perpetual fight be greater than the toll of living childfree?  We got awfully close, and I still tend to blame my country, my doctors, my employers, and my insurer for that.

When, in 2002, my mom decided to wave the white flag, cease all treatments, and allow cancer to take her, she did so because it was the path she physically and emotionally preferred.  Her insurer never told her she wasn’t worth it.  Her friends never asked her why she didn’t “just” stop wanting to be pregnant alive.  And, we, her family, didn’t doubt her when she said he mind was made up.  She was given the peace, the space, and the support to make the hardest decision she would ever have to make.  I’d be lying if I didn’t say that her decision hurt 19-year-old me, but, looking back now, I love her all the more for the strength she showed in her final months.  Our flirtation with ceasing treatment had none of those aspects to it.  Our insurance checked out, our family shook their heads and talked in hushed tones about the money we were spending, and we were asked at every turn to justify our decisions.  To reconfigure Carnn’s quote above, not because infertility is itself more difficult to treat than cancer, but because most insurance policies and random strangers don’t find it worthy.  Run your head into that wall every day for 4.5 years and, even under the most forgiving of physical and financial situations, you can see how the emotions might finally give out on you.  Or, at least, how they started to give out on us.

IVF is not for everyone, and IVF is not a guarantee.  But, as long as just a “small proportion” of infertiles have access to IVF, the emotional toll of infertility will continue to call the shots.  As long as women endure cycle after failed cycle of cheap procedures with far lower odds of success, the emotional aspect will take center stage.  As long as miscarriages are treated as diagnostic, at best, and “bad luck,” at worst, the emotions will cloud all judgement.  As long as reproductive choice (including the choice to reproduce) remains politicized, many infertiles will find their lack of choices leading them down a path of “Why do I even bother?”

The (wow that went) quickening

What a difference a week makes, eh?  Sorry I’ve left y’all hanging, but even when I’m totally zapped of time and energy and incapable of updating here, I still try to give the play-by-plays over on Twitter…

So, what we’ve learned in a week:

  • Baby But IF has a winkie.  The Mr. smiled from ear to ear as the ultrasound tech proclaimed proudly, “No doubting this one, that’s a big old boy right there!”  Momma hen came out a bit as I stifled the urge to reply, “Stop staring at my son’s penis!”
  • I’m half way through this pregnancy.  How in the HELL did that happen?  I mean, I know I’m probably saying this because I have yet to reach any sort “OMG I’m huge and miserable and uncomfortable” phase, but seriously can we slow this down a little bit?  It took us 4.5 years to achieve a sticky pregnancy, it seems kind of cruel to know I’ll only get to be pregnant for about 1/8th of the amount of time it took us to get and stay pregnant.  (On the flip side, I so desperately want to meet this little man that the prospect of our meeting on the horizon is probably enough to get me to stop the chorus of “That’s so unfair!”)
  • Stubborn boy doesn’t like kicking when daddy is within reach.  As I was settling into a good book in bed on Sunday night I felt a sudden something.  A passing moment, I buried my mind deeper into the book.  Then again.  And a split second later I thought, “Whoa, wait just a damn second!  You idiot!  You know what that was!  That was most decidedly a kick Mrs. Always-Late-to-the-Party!”  Of course, Mr. But IF was sound asleep so missed out on the tiny pitter patter I could feel both inside and outside of my tummy.  And, the following day, when baby boy decided to vent his Monday morning frustrations by attacking the front of my desk, daddy was a few buildings away at work in his own office.  The movements are still very minor and fleeting, but they’re there.  And, just thinking about that brings uncontrollable tears.  I was so very certain I would never see (and feel) this day; that it has come has melted me into a pool of topsy-turvy emotions.
  • My (now former) OB is amazeballs.  It’s not that I learned this this week, obviously, but more that I’m confirming it.  I had my last visit with him yesterday.  I peed in a cup, listened to little man’s heartbeat, had some blood drawn, and that was that.  Off to perinatology I go next week to face an entirely new unknown.  The departure was bittersweet.  Dr. T had a med student with him, so it prompted him to explain to her how 1. I was a complicated case, and 2. That I was a dream patient.  Though no one likes to be a medical students introduction to when to transfer a patient off to a higher level of care, it melted my heart to hear him say, “She’s a dream patient, this one.  She knows her stuff, and it’s important for all new doctors to learn when it is time to listen to a patient who knows what she is talking about.”  And, then he hugged me goodbye and threatened to hunt me down if I didn’t send updates.  It’s strange, for over a year I cringed as RE#2 and his ridiculous soul patch hugged me in his impish, condescending, zen-master manner; this single hug from an OB I met just a few months ago elicited a wholly different reaction.
  • The regional perinatology center may more closely resemble Alcatraz than medical nirvana.  As Dr. T said his goodbyes he warned me (and the med student) that “Things aren’t so cushy over there, but you’ll be in good hands.”  This really wouldn’t startle me, except he said it as I stared at the exam room’s peeling wallpaper, broken vertical blinds, and as Dr. T perched gingers on a stool meant for 4 wheels that, for whatever reason, now only had 3.  If my former office is “cush” I’m not quite sure what to expect from the new one.  That said, if 4.5 years spent running like a lab rat through a maze of medical offices has taught me anything, it’s that the dingier the office, the more amazing the doctor.  And I’ll keep repeating that philosophy as I try to avoid being shanked in the new doctor’s offices next Thursday.
  • Referrals move quicker when you’re pregnant.  A new rheumatologist will see me April 17.  That’s less than half as long as it took to get a referral last year after my third miscarriage.  I still don’t have much hope that we’ll get anything useful out of the appointment, but at least it’s something else to look forward to.
  • And, finally, I have amazing friends and family members that I totally don’t deserve.  The mother-in-law has been nudging me with shower planning questions since the New Year holiday and, while at first the thought struck fear straight into my heart, I’m now more and more on her side as it looks more and more unlikely that I’ll be allowed to make it to my due date thanks to all these new medical issues.  I finished my registry on Sunday, posted it on Facebook in response to a few questions I’d gotten earlier in the week, and, to date, I’m humbled by the response.  While things most certainly don’t equal love, all I gotta say is this little guy is so beyond loved it’s incredible.  He has no idea what’s about to hit him when he makes his grand appearance!

Is it tomorrow yet?

Another Wednesday quickie for you, in usual bullet fashion.

Things I’m looking forward to:

  • Our anatomy scan tomorrow
  • Seeing the heartbeat (please Lord!)
  • Our anatomy scan tomorrow
  • Seeing the wiggle… I guess shotgunning an energy drink before hand to make him/her hyper is probably bad parenting behavior?
  • Our anatomy scan tomorrow
  • Seeing if Baby But IF has an innie or an outtie
  • Our anatomy scan tomorrow

Things I’m able to concentrate on:

Things I’ve done to try and pass the time:

  • Created an entire Amazon registry in, oh, 2 days
  • Asked random strangers and long-time friends-in-the-computer to give me sex guesses based off our 13w2d NT scan (“Yes, I know there’s no nub in the picture, but seriously just freaking give me a guess people!”)
  • Bought new (used) maternity pants.  And a new comforter and sheets for our bed.  And a dining room chandelier, and wall art for the bathroom, and a rug for the living room, and new tables for the living room.  Hey, baby could her his/her head on our current square tables.  Baby needs light and clean sheets to mess upon.  And, might as well buy stuff while we have the illusion of having some money cause baby’s kill your savings account, right?  I mean, we’re totes rolling in it now because, you know, uninsured IVF is so totally affordable!
  • Dwelling on the fact that his/her will shortly no longer be a common part of my vocabulary.
  • Buying (seeing a trend here?) a sweet little journal to finally start my daily journal to baby.  My mom did one for me and, especially after her passing, it was one of the nearest and dearest items I have from her.  I always intended to do one for my child(ren), but IF and RPL made me constantly feel not ready.  Tonight I go home and write.  I want at least one pre-sex reveal entry in there!
  • Eating. All. The. Things. And, it’s corollary, fretting about the fact (don’t kill me!) that I’m now down to my pre-IVF weight at 18 weeks.  Shouldn’t the scale be moving the other direction?  Is this what having a working metabolism is like?  Crikey!
  • Filling out the pre-admission paperwork I’m supposed to send to my hospital at 20 weeks (isn’t that INSANELY early).  It was while filling out this paperwork that I realized, “Oh, yea, I have no idea who my doctor is!? Whee, guess I’m not getting this paperwork in on time.”
  • Biding my time waiting to hear from my former (kinda current?) OB’s office regarding my transfer to the perinatology center.  Seriously, this is still happening, right?
  • Setting up a new rheumatologist appointment.  April 17!  That happened a lot quicker than I thought it would!
  • Antiquing (how I loathe that word).  We’re looking for something special to use as a changing table in the nursery.  We found a contender in a marble-top Victorian dresser.  Mr. is sold; I have two conflicting opinions.  Mainly, 1. it would be awesome for a girl (quickly followed by a “OMG I’m already gendering this poor little one already.  Bad progressive mama!)  And, 2. if we did purchase it for a boy we totally have to get him this, a top hat, and a baby-sized monocle.  They make those, right?

Things I’m thinking right now:

  • How did it only take my 20 minutes to write this post?  WHHHYYYY IS THE WORLD MOVING SO SLOWLY!?!?!?!

The breakup

Last night I tweeted:

Welp, another bad blood test result. My OB is transferring my care to regional perinatology center. So fucking terrified right now…

I could probably just save myself a lot of time and leave this post at that.  It pretty much sums it up.  But, I won’t.  Mainly because I’m, well, fucking terrified.  And pissed.  And numb.  Somehow all at the same time.  And whining on this blog is usually something that helps with those feelings.

If you missed my post from earlier in the week, you should probably catch up there before going any further.  I don’t have the energy to review it all again.  I don’t have the willpower to make myself reread and recount a post that ended so (relatively) hopeful and optimistic.

At Tuesday’s reassuring appointment, I also talked the doctor into running a few additional blood tests that my old reproductive immunologist has recommended.  Again, the OB happily consented, but felt it was unlikely the antiphospholipid antibodies would be elevated since they’d tested normal so many times before.  Last night he called back to inform me that, while only one of the two antibodies he’d tested was back, it was, in fact, very elevated.  And so were my complement levels.  After reviewing the results he placed a call to our regional perinatology center seeking advice.  (Have I mentioned I love this man and his teensy, tiny ego?)  They reassured him he was doing all the right things – steroids, lovenox, careful monitoring – but, also informed him that it was probably time for my case to be transferred over to their center.  Put simply, a crisis is going on in my body for an as-of-yet unknown reason, and there’s no way we can continue the charade any longer that I’m just a normal pregnant lady.  I need the highest level of care around, and that comes from the center that serves the 9 counties in my part of the state.  I’m lucky, it seems, to only have to drive an hour to see them.  Though, “lucky” isn’t really a word I’d use to describe myself and my situation right now.  Lucky, it seems, is something I’ll never be.

Of the antiphospholipid antibodies tested, the anticardiolipin has yet to come back, but the hexagonal phase phospholipid nuetralization is sky high.  Like any good patient experienced with chronic illness I immediately Googled “lupus anticoagulants and pregnancy.”  Of the seven results that appeared above the fold on my laptop monitor, five included some combination of the words “negative pregnancy outcome,” “intrauterine deaths,” “miscarriage,” or “still birth.”  So, yea, there’s that.  Basically, the ANAs let us know that antibodies are attacking my body; the positive APA lets us know that at least some of these antibodies are attacking fats – or phospohlipids – including those fats in my cells and cell membranes, including blood cells and the lining of blood vessels.  The theory goes that as blood vessels are attacked, tiny clots can form, and those tiny clots can take a trip to the womb, get stuck in the placenta, and block the flow of nutrients from mother to baby.  Basically, my body may suffocate my healthy, happy kid.  Because, you know, that isn’t remotely fucked up or unfair in any way.

So, despite all odds, I have a happy, healthy baby inside me, grown from a crop of happy, healthy embryos, in a petri dish that made a much better home than my fucked up body ever could.  No one is willing to speak in certainties with these things, but we’ve got pretty strong evidence at this point that my last loss at least (and perhaps others) was from exactly this scenario playing out, but earlier on in the pregnancy when the embryo had no placenta to protect it from my immune system.  Turns out it was probably a pretty good call for me to demand dexamethasone and lovenox be added as part of my IVF protocol as the combination of steroids and blood thinners in the first trimester may have helped stop an immune flare that could have taken this pregnancy just like it took the last.  But, as I weaned off the dex as instructed at 9 weeks, my body was suddenly free to fuck up once again, and a flare of some sort began.  So, now we’re back to square one.  But, further along in so many heartbreaking ways.

I can’t control my thoughts.  They flit and float from once thing to the next without warning.  Overall, yes, I’m fearful for our baby.  For the innocent that my body might destroy.  But, then there are times I sink into a sea of self-pity.  WHY is this happening to us?  How have I not given enough already?  Why am I ringing in my 30th year with yet another health scare, yet another series of doctor visits and tests, yet more questions without answers?  And then, I get angry.  So very angry that this is my life.  That I spent so much of my 20s battling for health, and now it appears my 30s will be more of the same.  Angry that I know so much about the medical system and medicine despite being in a totally unrelated field.  Angry that I’ve given my husband a chronically ill wife, after he had to spend so much of his time surrounded by a chronically ill father.  Angry that I don’t even have my mother to cry to because cancer took her from me.  Angry that, should we succeed and bring a child into this world, my health may keep me from being the mother I always wanted to be.  Angry that my body may kill my child.  And then I feel selfish.  Selfish for wanting a child so badly that we ignored these warning signs.  Selfish for fearing for my own health when my child’s life is at risk.  And selfish for crying about the risks to the growing being inside me when so many others would give anything to have even a high risk pregnancy when the only other option is never experiencing pregnancy at all.  And from this flitting and floating (and likely also the all-out war that is going on at the cellular level within me) I end up exhausted beyond belief.  I now know why I never received the long-promised energy boost of the second trimester.  I now know that even this pregnancy will be a battle; that our fight didn’t end after conception, after the heartbeat, after a beautiful NT scan and quad screen.  Our fight, in many regards, is just beginning.

And of all these emotions, the one tiny pin that dropped and broke that giant pane of glass?  Hearing that my doctor was dumping me.  The doctor that listened and cared and has called me more times than I can count on evenings, on weekends, on holidays.  That was it.  That was the moment it all tumbled down.  For all my independence and doctor-loathing, I’d somehow come to need this man for strength and guidance and reassurance.  Now, we start all over.  Sure, my new doctors will be the tops in their field and have the health of me and Baby But IF front and center, but I’ve had too many bad doctors to be fooled into thinking that they’ll certainly care as much (if not more) than Dr. T. did.  And all that just makes me all the more exhausted.

When an itch isn’t just an itch…

This weekend was amazing.  I outgrew my favorite jeans, and wore maternity jeans for the first time to our post-holiday holiday party.  At said party I chatted with the first-time mother of a 10-month old.  We talked symptoms and nurseries, play dates and day care.  Her husband took me aside and said bittersweetly, “I don’t know whether this will hurt or help to hear, but I just am so happy for you.  You don’t know how many times I’ve asked myself why it is we had A so easily, while the both of you have had to fight so hard.  It’s just so unfair, and I couldn’t be more thrilled for you.”  This weekend I was rocking zenned out happiness.

Yesterday was not amazing.  Yesterday, after weeks of happy absence, the fear came crashing back.  The doubt my body could do this, the suspicions that we would ever have a happy ending.  Yesterday I talked lab results, waited hours for a doctor’s call-back, hit up those medical journals yet again.

Today?  Today I’ve mostly found peace.  I’m celebrating a doctor that listens (and makes after-hour calls and last minute appointments).  I’m taking my new pills.  I’m finding comfort in this familiar discomfort.  And, I heard baby But If’s heart beat.  No day can be a bad day when that’s a part of it.

It all started on Thursday.  A routine prenatal visit.  Actually, it was my first visit to the OBs that wasn’t super exciting.  It was “routine” in every way possible, and that was new.  I yet again peed in a cup (who knew that 4.5 years of practice would come in so handy?), I reviewed my symptoms, I heard the heart beat with the doctor’s doppler.  That was about that, and he perfunctorily asked mid-way out the door if I had any final questions.  Well…

On the long drive up to his office I’d been debating whether to mention something strange that had been on my mind.  You see, it’s not a drive to an appointment if I’m not pre-planning my conversations with the doctor.  Anyway, over the past couple of days I’d noticed an itchy rash developing on my hips.  And, increasing joint pain.  But, you know, 17 weeks pregnant and all, how silly must I be to be concerned about skin changes and joint pain?  But the hip thing had me startled.  If you’ve been around here for a while, you might remember I’ve mentioned my itchy hips before.  And the last time I off-handedly mentioned these ample hips of mine to an MD it got me sent for additional blood work.  And, then that blood work came back, well, off.  So off that we were forced to stop TTC while the elevated anti-nuclear antibodies (ANA) were investigated by a rheumatologist.  A rheumatologist that turned out to be both prone to cancelling appointments and utterly useless.  So, that’s how a mundane-looking rash was slowly starting to work me up to a panic.  I ultimately decided to go for it… what’s the point of all these appointments if I don’t regularly make myself look like a hypochondriac fool?

The OB, God love him, sat right back down and asked a few more questions.  He didn’t blow off my silly rash like, well, the silly rash it looks like.  He understood why I’d be concerned since the last time I’d had this constellation of symptoms I was in the midst of an unexplained miscarriage at 9 weeks after seeing several strong heart beats.  He reassured me that it was probably nothing, but did say he wanted to draw another ANA level just to “ease my fears.”  He was actually more gentle with my emotional state than I actually even needed him to be.  I wasn’t really concerned, per se, just curious.  He took that curiosity as blinding fear and reassured me as he left that the ANA was a quick test and I should call the following day (Friday) to get the results from the nurse.  “There’s no reason for you to worry all weekend!”  As he left the room I heard him in the hall telling the nurse to expect my call.  10 points for Dr. T.

Well, the next day I called, but, as so often happens, the reassurances of the receptionist that the nurse would call me back that day were overly optimistic.  I didn’t hear anything.  But, I also didn’t worry all weekend.  I put it out of mind.  I mean, I wore maternity pants and talked day care, for Christ’s sake!

Yesterday morning the results posted to my online patient portal.  1:1,250 homogenous pattern.  (Again, normal is under 50.)  I’m right back where I was after our last miscarriage.  I flew mentally right back to that place.  To the worry, the incapacitating fear, the dread.  The OB opens at 8AM.  I called at 8:01.

Turns out my OB was off doing surgery at another hospital all day yesterday.  A call-back from the nurse reassured me she’d message him.  A second call-back told me he’d replied to her immediately by e-mail and would call me as soon as he could get out of surgery.  So, having taken the day off work, I waited, ate chocolate, and watched Bomb Girls.  By noon I still hadn’t heard back, so I wrote a message to my former reproductive immunologist.  He replied back quickly with a few suggestions for additional testing (anti-XA to make sure my Lovenox dose was correct and another anti-phospholipid antibodies test to make sure I was still negative), but reminded me that, at his practice, he doesn’t even seen anyone past the first trimester specifically because he doesn’t believe immune/autoimmune issues matter much once the placenta has taken over supporting the pregnancy.  I mean, of course they matter, but not in the sense that they spell immediate doom to the pregnancy.  That helped to calm me immeasurably.

At 6:30pm the phone rang.  It was the OB.  He apologized for being stuck in surgery all day, and immediately got down to business.  I needed steroids, and I needed them now.  10mg of methylprednisolone for 7 days, followed by 5mg from the next 7, then a re-check of the ANA and my complement levels in 2 weeks time.  A flare of some sort is happening, and while it’s scary, he reassured me that 1. we caught it early, 2. this is not all that uncommon in someone with a complex autoimmune history, and 3. we’re out of the scary first trimester and have no reason to believe there is anything wrong with the baby just because my body is going haywire.  Luckily, the placenta is a fairly good nanny and keeps out most of the nasties my body seems prone to producing.  Then he said, “If you were my wife, well, I know you’d want the reassurance of hearing the heart beat again soon.  Can you come in tomorrow?”  I didn’t have the heart to tell him I’d been cheating on him with my home doppler, so that, combined with the fact that I NEVER pass up the opportunity for an appointment (and to pee in a cup), I said, “Yes, absolutely!”

Our appointment today went well.  I heard that thumping heart again, and he answered many of my questions.  We’re treating it as if I now have lupus and am experiencing a lupus flare, even though no rheumatologist (or any doctor for that matter) has been confident enough in my symptoms and lab work to label me lupus.  Lupus or no lupus, the treatment of an apparent immune flare is the same — short course steroids, followed by careful monitoring of my ANA and complement levels, as well as keeping a close eye on the littlest But IF.

It’s strange to leave an appointment where so much of the conversation was dominated by discussions of my new heightened risk of pre-eclampsia, pre-term labor, intrauterine growth retardation, and warnings to watch myself closely for other (lupus?) flare symptoms, with such a sense of ease and calm.  The drive for answers has been one of the few things that has kept me going on this sometimes unbearable journey to biological parenthood, when other options could have been investigated.  My gut told me that being diagnosed with spinal arthritis in my early 20s wasn’t right, that loosing 3 pregnancies (including a strong looking 9 weeker) didn’t add up, that an ANA that high surely couldn’t be nothing, that frequent fatigue and body aches that weren’t resolved by the best thyroid care I could muster made no sense.  Whether its lupus or not I really couldn’t care at this point, but seeing “nonspecific connective tissue disorder” at the top of my discharge paperwork this morning was a huge moment to me.  I’ve stopped believing that we’ll ever have all the answers for why we’ve had to go through what we’ve gone through, and have accepted that, no matter our need for answers, that for so many of us the answers will remain “It could have been” or even “We’ll never know.”  But having that label on that paper, having a doctor take my silly rash seriously, having a physician look me in the eye and thank me for bringing my concerns to him because, “It’s great we caught this so early,” that makes all the difference in the world.

I’m trying not to think to much about the future, to be honest, but am just focusing on the present.  Today we found some more puzzle pieces that were wedged in between the couch cushions.  Who knows if we’ll have the time, energy, or desire to finish the puzzle, but finding those pieces is a necessary first step.

Now, would I have given anything to avoid all this and continue on in my blissful, rash-free, non-lupusy, pregnant happy state for the next 6 months?  Fuck.  Yes.  But, if this had to happen, I’m glad this is how it all went down.  I’m glad that from 4.5 years of fighting, learning my body, and ceasing to give a crap what others think of me, I’ve come out the other side stronger and better able to help myself and ask others for help when help is needed.  I’m glad I’ve learned that sometimes and itch is not just an itch.

Survivor’s guilt (even if pre-survival)

Three realizations converged today (well, four if you count my new awareness of what the moist parts of your eyes and nostrils do in a -35F windchill).

First, I woke feeling lost about what to do with this blog in the new year.  I’ve had checking in here on my list of things to do for ages now, and even with ample down time over the holidays, I still couldn’t muster a post.  It came to a head this morning because I did actually, in theory, have something to write about.  Baby But IF gave us our first serious scare yesterday (well, aside from the constant, skull-numbing, miscarriage fears I’ve had since the moment I saw that flash of white shoot across the ultrasound screen on the day of our embryo transfer).  I won’t belabor the point (yet? ever?) but did y’all know that it’s common to have blood pressure dips in pregnancy?  I surely didn’t as I gingerly walked down the stairs to tell Mr. But IF that I thought I was dying yesterday morning after a post-vomit check-in with his blood pressure cuff gave me a starling 86/57 result.  So yea, I thought today, there’s something to chat about.  There’s an update worth mentioning.  There’s a way to contribute something of worth that might help someone in the future.  But no, I almost immediately decided, this blog is not the place to gloat about my (totally blown out of proportion) brush with death.  That’s totally inappropriate.

A few hours after making that decision, I read Dogs Aren’t Kids’ recent post “I’m an Asshole.”  And, what can I say, it resonated.  It wasn’t until about halfway through the post that I realized that I’m the hated and not the hater in this scenario.  And, that realization stung.  Not because her words hurt me (they absolutely didn’t), but because it felt like it was taking away part of who I am, part of what I define myself as.  You succeeded, Dogs, and this post is tremendously brave.  I just feel lost because I don’t know how to be brave myself anymore.  How to morph my IF activist self into a pregnant IFer with any semblance of credibility.  I stared at the empty text box for an hour, struggling to phrase a comment, find the words to un-self-righteously convey a “Fuck yeah! Damn straight!” on her blog as I chugged my Metamucil and wondered whether those flutters low in my abdomen are what I’ve started to think they might be.  Ultimately, I closed the tab.  I ran away.  I was decidedly un-brave.

Finally, it came together when a member of another IF “grads” board I’m on posted the Huffington Post’s blog “A Twin Mom’s Post-Infertility Survivor Guilt.”  As I wrote on my wall when I shared the article on Facebook:

Nothing more to say but “Yep,” “yep,” and “yep” (and I’m not even close to delivering or even fully accepting that we’ll get to meet this little one yet)!

I’ve actually used the AA chip analogy in therapy sessions before.  A few weeks ago my therapist asked (with no hidden agenda or any other motivator but to continue our conversation), “Why does membership in the ‘infertility community,’ as you call it, matter so much?  What makes you so fearful about leaving that part of your life behind?”  I stumbled quite a bit at that one.  Me, that usually has an answer planned for every possible question, for every contingency — I just froze.  I mumbled something about being true to myself, about wanting our struggle to help other people, about how I’ll never be able to forget what we’ve been through.  Ultimately I formed my own version of the AA analogy.  Though, in my version of IF AA you would get to stay a member forever… I’m just not quite sure how that happens just yet.

Then I got to Goldberg’s commentary on her shower.  She writes, “Years later, when my mother-in-law sent out invites for my own baby shower — for twins, no less — I had to stop myself from launching a follow-up email apologizing, saying something like, please, don’t feel obliged to come. People did come, though, with heaping bags of registry loot.”  That one hit me straight in the gut.  When we were home for the holidays my MIL announced she’d be throwing me a shower.  She asked when I’d like it to be, what I’d like, and who to invite.  My first thought was, “I can’t think about this yet, we still don’t know if this pregnancy will last!,” and my immediate second thought was, “Oh God, even thinking about going to my own shower is overwhelming and filling me with dread and bitterness!”

I have some confessions to make.  Namely:

  • I still loathe pregnant women.  Like give them dirty glares from across the aisles at the grocery store levels of hate.
  • I’m terrified of the day I really start showing.  It will truly be open season for talking to me about my pregnancy.  A few have tried it already, and I keep replying to all questions in hushed whispers, all the while suspiciously looking around to make sure no one can overhear me. This from a woman that gladly discussed infertility, IVF, IUI, timed intercourse, cervical mucus, miscarriage, hell, you name it, loudly and proudly in crowded bars and restaurants.
  • After four years of being anal retentive about every drug, calorie, drink, or thought I put into my head (Could this saucer of soy sauce make it less likely for us to conceive?  Will half a cup of coffee impact the effectiveness of Clomid?), I’ve been startlingly hands off about this pregnancy.  I’d love to say it’s because I’m just that cool and relaxed about it all, but, if I’m being honest, I had that sushi on December 23rd and that second cup of coffee on Tuesday because I can’t bring myself to act pregnant.  I’m still so certain it won’t last.
  • I’m ashamed to discuss the preliminary baby names we’ve agreed upon with friends and family.  Not for the usual reason – you know, the fear that someone will hate them – but more because it feels like an act of smug arrogance.  Frankly, I’d love for them to argue with me about hating the name because fighting back is something I’m pretty damn good at these days.  Having happy, lighthearted conversations isn’t.
  • And, perhaps the deepest, darkest secret of them all, I’m actually excited.  I’m fascinated with my hardening belly, the flutters I think just might be something other than gas, the sound of my doppler, and (once the sheer panic dissipated) even the threatened black out yesterday.

And, that’s what today has given me.  I don’t know what this blog is for, or even who would want to read it anymore.  I don’t know how I can live life infertile and pregnant at the same time.  I don’t know if the survivor’s guilt will fade or if I even want it to.  All I do know is that I’m here, I’m infertile, I’m pregnant, and I’ll likely be trying to figure it all out for the rest of my days.  Why else is life worth living if not for growth, reflection, and reinvention?