Resolve to know more about the lasting scars of infertility

* Note: Since new readers may stumble on this post via my submission in the Bloggers Unite challenge, a word of warning.  This post will discuss a current pregnancy, past pregnancy losses, and plans to parent after infertility.  Please tread lightly if any of these topics are triggers.*

 

It’s National Infertility Awareness Week (NIAW) yet again.  It’s hard not to let a milestone like that make you pause and reflect.  This will be my fifth NIAW as a mother-in-waiting; this will also (hopefully) be my last NIAW as a mother-in-waiting.  Today marks 31 weeks 1 day gestation of the IVF miracle kicking away in my belly.  (Somehow “miracle” doesn’t seem the right word for something that a healthy mixture of science and dumb luck created, sustained, and guarded for the past 7 months, but our language is full of gaps when it comes to the often taboo topic of infertility.)

When we started naively trying for our first child five years ago, I knew nothing of NIAW.  I knew hope and optimism.  I knew the emotional tears of joy and connection that dripped down my cheeks after the Mister and I really “tried” for the first time.  I knew the worries about having enough money, where to put the nursery, and wondering if we were really ready.  I knew absolutely nothing.  Five years, three miscarriages, three surgeries, thousands of pills and injections and doctor’s visits later I struggle to remember who that woman was.  I’m tempted to despise her naivete, to squirm at the thought of her cluelessness, to shout at her for all the times she’d asked casual acquaintances, “So when will you have kids?”, to slap her for telling her inlaws over lunch one early spring day that she wouldn’t be having caffeinated tea because, well, they were “trying.”  Then the frustration and anger I feel fade and are replaced with deep sadness.  I will never know that woman again.  She’s gone for good.

Four years ago I still had never heard of NIAW, but I was starting to get acquainted with “infertility.”  Even before a year of trying (the standard period required for an infertility diagnosis at my then-age of 27), I knew I was infertile.  In 8 months off of birth control I’d only had three periods.  I’d already become disillusioned at the prospect of buying and wasting home pregnancy tests, I reflected back to the “normal youthful” irregularity in my cycles which had landed me on birth control at 18 to begin with, and I was increasingly anxious for answers.  I began to dip my toes into the world of online fertility charting and chat rooms and learned how it felt to have my heart break each time a “friend in the computer” crossed to the other side – the pregnant side – without me.  In the beginning I allowed my doctors to convince me that the pressure I was feeling explained my mood swings and depression.  I was told it was “typical” for cycles to fluctuate after birth control, for conception to take up to a year, for a little bit of anxiety to set in when it didn’t work like it did in the movies.  For months I lived two lives – the driven professional woman who worked full time and attended graduate school in the evenings and on weekends; and the scared little girl who felt like her body and soul were breaking.  Worst of all was the knowledge that the only things wrong with me were impatience, a low pain tolerance, obesity, and a little “run of the mill” depression.  Then one morning in February I woke up in a panic.  I didn’t know who my husband was.  When he handed me the phone to call out of work, I didn’t know how to use it.  He got me in with our doctor (yet again) that same day.  She (again) repeated that I had a busy, stressful life and likely just needed a hobby, to get more exercise, and to relax.  But, she also agreed to run blood work.  The next day, February 8, 2011, marked the beginning of  the next phase of my infertility.  It was the day I was taken seriously, the day I started to get answers, the day we learned my thyroid had basically given up.  Ultimately, it was the first day I knew I was ill.  It was liberating and terrifying in equal measure, but I celebrated it as the beginning of the end of my fertility troubles.  A pill a day, a few blood tests, and I was assured we’d be pregnant in no time.  The diagnosis of PCOS a few months later came with the same good news: two pills a day, diet management, and I’d be pregnant in no time.  I embraced each new diagnosis as a sign that we were getting closer to our goal.  Looking back I still feel much the same, but I wish I could take myself aside and tell myself not to celebrate prematurely.  The doctor’s visits would continue, the diagnoses would continue, the familiarity with the American medical system and insurance regulations would bloom into another full-time job.  The journey was still at its starting point.  I needed to pace myself for the diagnoses and surgeries to come.

NIAW 2012 was the first I celebrated.  On Wednesday night we attended a fundraising dinner hosted on behalf of NIAW by one of the members of my new RESOLVE Peer-Led Support Group.  Yes, I’d formed my state’s first (and still only) support group.  I’d done it as a way to pass the time and to dull the ache of my first miscarriage a few months earlier.  The miscarriage that may have been/may not have been an ectopic pregnancy.  The one that was treated with chemotherapy that sidelined us from trying again for 3 months.  The one that was mismanaged by an OB/GYN that had no time or patience for me.  The one that inspired us to finally seek out a reproductive endocrinologist no matter the financial cost.  NIAW found me at the perfect time.  Our souls had been crushed, the tears were free-flowing, the sense of isolation and separation from the “normal” world was smothering me.  NIAW 2012 bore the message “Don’t Ignore Infertility!” and I listened.  I raised my voice in our support group meetings, I embraced my core group of “fertility friends in the computer,” I shared our story on Facebook to highlight the dangers of personhood legislation, I signed us up for the 2012 Walk of Hope.  Each bold and public move was underscored and fueled by another private setback or heartache.  2012 brought my second miscarriage, the laparoscopic surgery that diagnosed my endometriosis, several failed cycles with our first reproductive endocrinologist, and a job offer from another state that removed us from the support networks we’d built for ourselves just as it gave us the gift of working in a state with a (weak) infertility insurance mandate.  I learned the hard way that infertility can and does impact so many life choices.  Where to live and work, how to form deeper bonds with old friends and quick bonds with new friends through shared struggles, how to answer, “So, do you have kids?”  And, at the time, I was proud of the strength I’d found through my growing engagement with the infertility community and becoming an infertility advocate.  I still am today, but its become bittersweet.

Last year I started this blog, I submitted a post to the Bloggers Unite challenge, and I was humbled to be selected a finalist for last year’s Hope Award.  My public self was riding high on the cause of infertility, as my private self mourned the loss of our third pregnancy.  We’d seen the heartbeat only to see it cease.  We’d driven 8 hours in one day only to be told my our last chance specialist that only time would tell what would become of the pregnancy.  We’d traveled to maternity triage for an emergency D&C only to be told it couldn’t be performed on a Saturday and be sent home with sterile collection jars for the products of conception.  My “Join the Movement” post was largely, if not joyful, at least driven.  Yet, I wrote it as the Mister and I talked in quiet rooms about when “enough was enough,” when we’d move to a life without the prospect of children.  I was struggling to put my voice to it then, and frequently still struggle with it now, but last year’s post showed me even more clearly the duality of a life lived under the specter of infertility.  The pride, joy, empowerment, and, yes, even hope kept me going.  It provided me with a sense of self and purpose beyond my own struggles.  It made the injections and visits and surgeries bearable.  But, in time, that same empowerment, that same respect for my own needs and emotions, started to take away from the drive to continue.  It allowed me to reframe our failure to conceive and sustain a pregnancy as something other than failure.  It gave me the strength to set limits.  We’d complete an IVF package with all the pharmacological bells and whistles our far away specialist had recommended and when those cycles were done we’d be done.  The baby boy who’s kicking me resulted from IVF.  The “unnecessary extra meds” from the specialist – steroids and blood thinners – sustained the pregnancy.  The attentive OB/GYN I picked out of the yellow pages acknowledged my fears and ran the tests that got me my latest diagnosis – antiphospholipid syndrome.  The high risk pregnancy practice that OB/GYN referred me to has kept him baking even as my body has endeavored to resist their efforts.  All of the above led me to want to label this year’s post something along the lines of “Resolve to know more about how much dumb luck is involved in this process.”  But that ultimately felt off base with the emotions I’m feeling right now as I sit on the precipice of (hopefully) parenting after infertility.  And setting that parenthetical “hopefully” to virtual paper finally gave me my prompt, finally guided all the words you’ve read to this point.

This year I resolve to know more about the lasting scars of infertility.  The physical, emotional, and financial scars are ever-present.  They’re the nervous tick that keeps me from writing with certainty that I’ll definitely be parenting after infertility by June.  They’re the sadness I feel at having lost the connection to the woman I was during NIAW’s past.  They’re the frustration I endured when reassuring our accountant that, yes, I had indeed traveled over 4,000 miles for medical treatment in the past tax year.  And, yes, they’re even the raised red lines that traverse my pregnant belly marking incisions past, and reminding me of the incisions I’ll face in the future as I continue to navigate life with both endometriosis and a potential clotting disorder.

I never really thought that a lasting pregnancy would “cure” my infertility, but I also wasn’t quite prepared for how deep the scars would be and how sore they’d remain.  I miss that naive girl, I miss the (illusion) of health, and I miss the ability to make life decisions without questioning how they’ll impact me as an infertile woman.  For five years I was certain I knew my ultimate goal.  Yes, it changed a little – from pregnancy, to lasting pregnancy, to some sort of final and personally acceptable resolution to our infertility – but I always knew what we were reaching for.  I always had an idea where the finish line was located, even if I was having trouble getting there.  Today I don’t have that certainty.  Today it’s easier to reflect on where I’ve been, than to contemplate where I’m going, because it’s the past that’s given me these scars, and the past that will dictate how they shape my future.

Maybe I’m a bit strange, but when I woke up from my first laparoscopic surgery in 2012 I was proud of the scars that I bore.  They indelibly marked this struggle in a way nothing before had.  They added a physicality to this battle that I’d carry around with me for the rest of my life.  I’m finding now that those visible scars are just the tip of the iceberg.  Just as there’s no balm to vanish these incisions, there’s no salve to erase the many scars of infertility.  I continue to wear them all with honor.

 

To learn more about infertility, NIAW, and RESOLVE: The National Infertility Association, please follow the links below:

A bitter taste that doesn’t fade

Mid-way through the two-day intensive child birth preparation seminar we attended last weekend one of our instructors asked:

Who here thinks giving birth is going to be the hardest thing you’ve ever done in your life?

My hand stayed firmly at my side, while the hands of those around me shot straight up.  The mister and I gave one another a solemn, knowing look, and the moment passed.  It was likely a blip on the radar of so many others in the room – the woman who had to turn away during the bloody birth scene in one video, the many others who let out an audible gasp when our instructor introduced us to the Kiwi delivery device (the next-gen vacuum extractor), and the coach who got squeamish when our instructor noted that the prostoglandins in semen can induce labor.  But, to me, that 5-second show of hands was one of the biggest takeaways of our child birth education rite of passage.  I’m different.  We’re different.  Infertility doesn’t fade.

Don’t get me wrong, had the instructor phrased that question one of any number of different ways I might have joined in with my classmates.  One of the most physically taxing experiences of my life?  Sure.  Something for which I can’t be truly prepared until the moment arrives?  Absolutely.  An even that will redefine physical pain for the rest of my life?  I don’t doubt it.  But, to be entirely honest, I don’t suspect that the physical act of child birth will really, truly be the “hardest” moment of my life.  Whispering permission to die in my mother’s ear?  Bingo.  Walking in to maternity triage to get a double dose of methotrexate to terminate our first pregnancy?  Up there too.  Enduring 12 hours of contractions at home after being sent away from the hospital to birth our third dead fetus?  That definitely is on the list.  No, instructor, I don’t think giving birth is going to be the hardest thing I’ve ever done.

For better or for worse, I’m an education junkie and feel quite comfortable in the classroom.  That’s probably why I’ve built up the act of attending a child birth seminar in my mind so very much over these past 4.5 years.  It’s not that I’ve not gotten excited (and stressed) about finishing the nursery, and I even managed to find a sense of (uneasy) happiness at my first family shower two weeks ago; but, that child birth class?  That’s the moment I’ve most been waiting for.  That day that would tell me this is real.  I’ve always assumed that sitting on a floor huffing and puffing in comical fashion with a dozen other expectant couples would finally normalize this experience for me.  In a few ways, it did; but, in most ways, it absolutely didn’t.

Don’t get me wrong, we left with valuable information and I’m extremely comforted by the fact that I now have my bearings in the hospital we’ll be delivering at.  (A hospital I never set foot in until Saturday.)  Mr. knows where to drop off the car, I know what the birthing rooms look like, and we both know that there’s a definite disconcerting bounce to the upper floors L&D occupies.  (Thankfully, I don’t think I’ll be fretting about a bouncing building mid-delivery.)

It’s just that I also left knowing that pretty much nothing is going to normalize this pregnancy after infertility stuff for me.  And by that I truly don’t mean to be negative.  I couldn’t be happier or more excited to meet this little man in a few short months, and I don’t remotely regret attending the classes.  Just as they prepared us to navigate the built environment of the large teaching hospital campus we’ll be using, the classes also provided me with the knowledge that a certain amount of bitterness is going to be my perpetual bedfellow in this journey.  I won’t wallow in it, but, sometimes it’s just nice to know the lay of the land.

And, the emotions I experienced during the class aren’t likely to go away as we (oh please God!) transition from pregnancy to parenthood.  At just 30 years old, I felt old in the classroom.  In league with one or two other couples, we were the “old parents.”  We were frequently the babies in the infertility waiting room, so seeing so many faces lacking wrinkles and heads missing gray hair was unanticipated and a good bit unsettling.

Then I realized that most of our fellow classmates knew one another or knew our instructors.  The city we’ll be delivering in is kind of a “small town, big city.”  The nurses that led the class were the appropriate age to be friends with the parents of the mid-twenty somethings that occupied the room with us, and many of them were.  Other classmates were young professionals with the same local firms, and still others came from the nearby army base.

In all of this, one word prevails – “nearby.”  Each of our fellow classmates (like most sensible people) are a short distance from their hospital of choice.  We, on the other hand, will be traveling just about an hour to get this baby out.  We have to; I’m high-risk and this is the only hospital equipped to deal with high-risk patients.  As our instructors taught us to leave for the hospital when our contractions were 5 minutes apart, 1 minute in duration, over the course of 1 hour, one casually commented, “… because no one’s from over an hour away, right?”  I raised my hand and our instructions were altered to 7 minutes apart, 1 minute in duration, for 1 hour.

But, ultimately, I wasn’t worrying nearly as much as my fellow nervous classmates about deciding when to head for the hospital, because odds are our drive up will be timed to the convenience of our physicians, not my body, as they intend to induce if I get to 39 weeks.  And induction means doing it all at the hospital.  Being high-risk also means constant monitoring that made our tour of the whirlpool tubs and discussions of laboring in water all the more frustrating to listen to since those won’t be options for me.  At times, I found myself sitting back and mentally saying to my fellow students, “Oh, honey, don’t worry about how big that bathtub is… you’re gonna be begging for an epidural the second you roll in.  Accept it and move on.”

I had thoroughly othered myself.  An older transplant to the region that would never have the “typical” birth story (whatever that is!).  That’s not going away anytime soon, so acceptance sooner rather than later is probably a good bet.

Oddly enough, I only started easing into comfort with the classes on the second day when our instructors had learned enough to start calling me out as the special snowflake that I am.  On day one I was pretty miserable.  The class began as our instructors noted that, while their own pregnancies had been a while ago, they were still L&D nurses and instructors and were abreast of how the field had changed in the intervening years.  And, even more importantly screamed one, “My kids have given my grand kids!  Squeal!”  To which the other one replied, “Yes, my children have been delinquent and haven’t given me any yet, but they will soon or they’ll be hearing about it!”  The room laughed lightly, the instructors playfully jabbed one another, I turned a violent shade of fuchsia, formed my fist into a ball, and almost walked out barely thirty seconds into the class.  I was fuming for most of the rest of the 2.5 hour session.

Saturday morning was similar in tone, and then came lunch.  The instructors sat at our table and did something that oddly made me feel instantly better.  We had the names of our OB/GYNs on our name tags (to help us find our “labor buddies” with similar practices?!? Yea, no one else was with my MFM…) so the one instructor asked, “So, why are you with Dr. S?  He only takes really difficult cases, no?”  That might have made some of you squirm, but to me it was just the opening I needed to start the conversation about how I found her comments the day before a bit unsettling.  I listed off my resume – IVF, 3 miscarriages, antiphospholipid syndrome – and she went from playful (bumbling) kindergarten teacher holding the hands of a bevy of nervous fergiles to the educated L&D nurse instructor that she was at her day job.  From that point on – during the tour, through our discussion of pain management options, to the section on induction and labor augmentation – she looked me in the eyes, gave me additional tips and advice, and waited until I’d asked all my questions.  It’s amazing how you can go from hating something to loving something in the blink of an eye.  I even began to cut my classmates some slack, not the least of which because one particularly squirmy gasper overheard my conversation with the instructor at lunch and identified herself to the two of us as the survivor of 7 IVF cycles, the last of which landed her in our midst.

I’ve always known that there are many different and equally appropriate ways for women and men to endure struggle.  Mine has always been to latch on and find strength in difference.  To be brash in the defense of my journey and emotions.  I rarely sugarcoat the death of my mother, and – over time – I’ve come to be downright obnoxious about our IF.  It’s what works for me.  Others, though, are going to find strength in, well, not necessarily “forgetting,” but in moving on.  Child birth videos don’t make me squirm because, well, I’ve watched videos and seen pictures of my laparoscopies and those are a wee bit more frightening to my mind.  And, I was always a masochist throughout my IF.  I watched the videos, I read the child birth books, I was the most birth-educated non-mother around.  Whereas others can compartmentalize, I always wanted to know it all and know it NOW.  No one way is better or worse, but I sure wish I had taken the time to reflect on how my methods of coping would impact my move from IF to (lasting) PG after IF to (again, please God) parenting after IF.  Then again, I don’t know that I could have worked through this all any earlier than this moment.  That I could have anticipated how defining myself through difference would change when the differences became different.  And, that’s why I’m oddly happy we did take these child birth classes.  No, I didn’t need to learn about the stages of labor, or form bonds with my fellow nervous mamas to be, but I clearly DID need to work through some of this baggage.  And I think I’m closer now than I have been at any other stage of this pregnancy…

In which I have a breakdown

See, the trouble with having expectations is that life almost inevitably never lives up to them.  And then, if you’re anything like me, you spiral into a pit of ennui followed by a decent amount of self-loathing.  And then the capstone breakdown moment which just serves to remind you that you are far too fucked up to have had any business setting up expectations for your life in the first place.  It’s a fun ride, and I can’t help but think it’s been made even more tummy tickling by the healthy dose of hormones I’ve got rolling through this ol’ body of mine.

I don’t even know how to articulate where I’m at right now.  Linear thought and reason have left me, it seems.  I think of one thing to type and I immediately flit to another issue.  All that adds up to a silent blog and an overwhelmed me.  So, where to begin…  I guess with this blog.  You know, this one I poured my heart and soul into.  This one I was so proud of.  This space that provided sanity that now only reminds me of the sanity I feel like I’ve lost.  It’s one year anniversary was last Sunday and I totally missed that (whoops), as did I miss the Twitterversary that came a few days later.  I had helpful emails from WordPress and Twitter reminding me of the occasions.  The emails led to hyperventilation and a whimper of “No more.  I can’t take one more thing right now!”  That’s completely and totally healthy, right?

Just as healthy as laying a new floor at 28 weeks pregnant, I’d think.  My knees are currently on strike, but, you know, priorities.  The floor in the nursery does look damn fine.  I think I’ve previously explained here what a wonderful sense of pride and worthiness one can reap from rehabilitating a badly run-down grand old home.  Listen to me now: Ignore the batshit crazy lady who watches far too much HGTV.  Preparing a room with the world’s creepiest white-washed teddy bear wall-paper, drop ceiling, and stained carpet hiding loose asbestos tile flooring to be the one-day home of the son we’ve spent, oh, every last ounce of our time, energy, money, and metal stability trying to create for the past 4.5 years?  Yea, not nearly as rewarding as you’d think.  Doing it on your own while contractors concurrently gut and remodel your downstairs bathroom at 28 weeks pregnant?  Seriously, what the FUCK was I thinking?  Clearly, finding a resolution to our infertility led me to believe that I’d somehow been imbued with superhuman powers.  You know, cause getting 1 in 4 embryos that managed to find a home in my womb to actually stick around for 28 weeks makes me totally capable of, well, climbing ladders, painting (on the same day our hot water heater died), ripping up carpet, laying new flooring, and doing a rickety flight of stairs each of the 100 times a day I have to pee…

nursery after picture

Nursery After

nursery before picture

Nursery Before

But, at least that job I took because it would provide a better work-life balance for me and my finicky uterus has totally gone to crap.  Because I totally uprooted my husband and moved us both to the middle of snowy nowhere for long and un-rewarding work hours, never-ending physical demands, an unreliable leadership who philosophically opposes my understanding of my entire professional identity, and a maternity leave policy that is entirely unwritten and made up as you go along to suit the needs of whoever you happen to be talking to at the moment.

After 4 months of negotiations, though, it does appear I will get a decent leave thanks to having taken about 2 days of vacation time in the past 2 years.  (Silver lining ftw.)  I mean, I can never take vacation because of my husband’s two-job work schedule that makes it impossible (or at least damn challenging) for us to leave town on the weekends.  Did I mention that includes both this weekend – my shower in my home town 6.5 hours from here – and next – our childbirth classes?  Don’t get me wrong, I absolutely LOVE spending 14 hours in the car and 8 hours in an over-priced roadside motel, to spend 24 hours in my childhood home for a shower that will only be attended by my guilt-tripping aunt, two additional aunts who disowned my side of the family while I was growing up, a great-aunt I’ve met once, and my two bestest girlfriends (at least there’s a win).  Do I sound ungrateful enough for you yet?  No?  Well, how ’bout I tell you about the temper tantrum I threw yesterday when I found out that my cousin (daughter of one of the two “we will shun you for 20 years then pretend nothing ever happened” aunts) gave birth to a happy and healthy baby boy.  The baby boy she conceived on her honeymoon after the wedding we suddenly couldn’t attend because I was on all fours in my bathroom back home birthing my third miscarriage.  The cousin who was on a fucking dating-based reality show the year Mr. But IF and I first started trying to conceive.  The new baby that will be the center of attention throughout my entire shower, and whose name shares several syllables with the name our son will get when he arrives.

Bitter enough for you yet?  I know writing it all out surely makes me want to strangle my irrational, self-centered self.  So then we turn down the path of discontentment.  The size of the “You’re getting everything you fucking wanted and dreamed for so long” slap I want to deliver across my tear-stained cheeks is frighteningly out of control.  So I try to recenter myself, to focus on what’s important, to find a healthy way to let it out and move on.  Last week I called my therapist for a much-needed appointment only to find her only availability conflicted with an endless array of stressful work meetings.  We moved to this week to discover that her open slots were all on Thursday, the day of my day-long 28-week appointment (2 hour round-trip, growth scan, GD testing, consult, etc.).

At least I tried to get help, but, omg, I should totally just “snap out” of my mental crap and focus on the fact that shit is getting really real with the MFM after this week.  Thursday’s appointment is the “beginning of the end” of my pregnancy treatment plan, and will be followed by my first non-stress test (NST) at 30 weeks, which will happen weekly until 32 weeks, and then continue on bi-weekly until 39 weeks, at which point, if I haven’t gone into labor, I will be induced.  I’m beyond grateful to be getting this much attention, but telling an already stressed out and overwhelmed patient that she’ll be spending approximately 5 hours a week just in the car from 32 weeks onward doesn’t help with the stress level.  Add to all those round trips NSTs that, I’ve been told, could take anywhere from 15 minutes to a full day, that could result in the decision to immediately delivery there and then, and I’m just feeling oh so relaxed.  Good thing my ability to take any sort of maternity leave rests on me working a 40-hour week up until the moment of delivery…

And then, I step back and get immeasurably angry at the fact that IF caused this all.  IF made the blog and, more importantly, made me judge my worth by the meaningful ways I contributed to the IF community.  IF (and the subtle acceptance that we’d never have a family) made us feel prepared to tackle an endless array of house projects over the next decade, and “beating” IF fucked up that timeline.  IF encouraged me to put time and effort into improving my education and finding a new and rewarding position in a state with an IF insurance mandate.  IF made me incapable of planning a shower until the last moment, and IF-related pregnancy complications are making us throw that shower early in the third trimester.  IF familiarized me with a life dictated by doctor’s appointments, and IF hinted at the autoimmune issues that got me booted to high-risk pregnancy territory.

And, I think, above all, IF was an easy scapegoat for issues I would’ve faced no matter what.  I think I really cry because my mom is gone.  She should be planning my shower, she should be trying to calm me and tell me it will all be alright, she should let me whine and complain and scream and cry and still love me just as much after it all is out.  My shower, like my wedding, was never going to be without emotion, without a sense of loss.  Blaming IF masks some of that, but when the tears came in the bathtub on Sunday it wasn’t because I was unfulfilled in my career, because my husband’s second job interfered with our travel plans, or because my shower will be poorly attended.  Becoming a mother, without a mother, hurts.