United in stunned disbelief: A blog rec

I’ve kinda been all over the place lately.  I spent my first 3 nights away from N this past weekend.  I had to go out and start attending to my dad’s house.  (The sheer volume of mouse droppings on his countertops when I dragged myself in the door after an epically bad 8.5 hour drive assured me that the trip was necessary.)  All three of the ButIf’s, not the least of which the littlest ButIf, have been sick off and on since at least November.  The hubs and I, both still recovering from last month’s pneumonia diagnoses times 2, are struggling to identify our roles as parents, to find a schedule somewhere in this life that has absolutely refused to be scheduled.  Dealing with orphanhood has also been weighing me down.  Not just the obvious emotional toll, but also the medical bills, the calls to the estate lawyer, the drive to pick up the cremains, the arguments with water companies that expected his bill to be paid on time despite the fact that their customer died the day before his bill was due…  I digress.  But, finally, my health has also been a constant elephant in the room.  I’m in pain a lot these days.  Surely all the driving and the physical exertion at my dad’s house isn’t helping, but no 31 year old should hurt this much.  Tingling hands, aching legs, the reemergence of the hip rash, weighing 10 pounds heavier at 9 months postpartum what I did the day I delivered, a back that causes constant, sleepless pain.  Next week’s rheumatologist appointment can’t come soon enough.

But, as I circle the wagons in preparation for another battle with medical professionals (albeit one that I still have some respect for), it’s causing me to reflect on my experiences with the medical field.  To put it simply, I’ve been failed just so many times.  And the cause hasn’t really mattered.  What unites my experiences navigating the medical diagnoses of infertility, repeat miscarriage, endometriosis, Hashimoto’s, PCOS, and my as of yet undiagnosed spondyloarthropathy is one thing – I’ve had some truly baffling responses lobbed at me.  The college health center MD who, upon first suggesting PCOS as the reason for my missing menses, casually stated to 20-year-old me, “You’ll be infertile, but otherwise you’ll be fine.”  The PCP who recommended a hobby and counseling would cure my uncontrollable and unexplainable weight gain.  The OB/GYN nurse who spent 10 minutes badgering me to tell her exactly which prenatal vitamin I’d been taking, even though she knew that day’s appointment was the one at which I’d be told that I needed to terminate the suspected ectopic pregnancy I’d been carrying after 18 months of trying.  The phlebotomist who offered to be my surrogate because, “I get knocked up whenever my husband looks at me!”  The other OB/GYN who, upon learning I’d relocated to the area, was infertile, and was going to be pursuing more infertility treatments, kept talking to me about the REI in the big town up the road (apparently years of medical school and residency in the field of obstetrics didn’t dissuade her of the notion that one goes to a sporting goods store to treat infertility).  The rheumatologist who told me she couldn’t help me until my disease had progressed to the point that I could no longer function.  The common thread is the sheer WTF-ness of it all.

And, I’m not alone.  That’s why I was happy to stumble upon the new blog You Need a New Doctor.  There’s a few things that sharing these truly horrifying stories can do.  They instill solidarity in those of us who have endured them, they let us know that (sadly) we are far from alone.  They give us a chance to laugh (or cry) along with a community of fellow-travelers.  They shame a system that has repeatedly failed us.  They inspire us to help make the system change.  They let external observers in on the dirty little secret that one person’s “unfortunate bad experience” is, in fact, an entire community’s burden.  We can do better.

So, please check it out.  And, while you’re there, check out my own submission about my third miscarriage – Thanks for the Jar?

Resentment

Here’s the biggest thing I wasn’t prepared for when it comes to pregnancy after infertility.  Sometimes, while pregnant, you get depressed.  You worry, you cry, you panic.  That I was prepared for.  But the self-loathing and shame that can result from those worries and tears and panics?  Not so much.  I’m not going to lie.  I’m a total mess right now.  And, I think it’s been made worse by the fact that I haven’t felt like I could write it here.  I haven’t felt I could express it anywhere.  Not to friends, not to my husband, not to my therapist.  I hate myself and who I am right now, and not the least of which because I know I should be better, I should cope better, I should be grateful.

This little man’s been breech at every. single. visit. since the NT scan at 13-some weeks.  I was proud of myself for not worrying too much about it, because I knew it wasn’t a cause for concern until some far off, distant “later.”  It appears later is here.  Or, so it would seem from the simple one-page letter I unexpectedly got in the mail on Saturday telling me the date and time of my c-section.  The date and time of my son’s birth.

Since “the letter” I’ve been a disaster.  I cried for most of the rest of Saturday, managing to haul myself out for a few hours that night for a going away party for one of my closest friends here who will be moving to the other side of the country in a few short days.  Sunday I struggled to hold it together, but was still mostly in a daze.  Monday found me losing all composure throughout my morning ultrasound, non-stress test, and consult, and going through the motions of the rest of my workday, only to come home and snap.  I stayed awake long enough to do my 7:20pm lovenox injection, before going to sleep without dinner, without stopping the tears, without emerging from the darkness that had become my new mode of being.  I do remember my husband begging me to reassure him that I wasn’t thinking of “doing anything stupid” before I stumbled up to bed.  I remember waking 12 hours later, remembering the look in his eyes as he asked it, and starting to cry again.

I feel trapped between two worlds right now.  The “what should be’s” and the “what is,” the “I know better’s” and the “I’m tired of knowing better’s,” the “gratefulness” and the “jealousy.”

When I try to be rational, I eek out the following:

  • Holy shit I’m pregnant.  Really, REALLY pregnant.  Like, I may very well get to meet this child pregnant.
  • There is a nursery.  In our house.
  • You’ve got bigger things to worry about.  Like him surviving you coming off your meds.  Like him surviving.  Period.
  • The method of his delivery doesn’t matter, just that he gets here safely.
  • Seriously, read the above, you know better you fucking twat.

But, 99% of the time my thoughts are more of the variety of:

  • I’m tired of being understanding.  I’m tired of accepting what life throw’s at me.
  • I’m done with being the minority.  The 1.5% of births from IVF in the country.  The 2-4% of the general population with antiphospholipid syndrome.  The 1-3% of women who have scheduled C-sections due to a breech presentation.  The list goes on.  I’m a walking, talking ball of “This is SO UNFAIR!” right now.
  • I’m over surgery.  The C-section will be my 6th in 4 years.  Everyone assumes I’m upset because I’m “scared” of surgery.  No, I know surgery intimately by this point.  There is no fear there.  Just a lot of anger.  And, a lot of knowledge of what recovery will look like and physically and mentally feel like (especially given how much my body detests analgesics).
  • I’m sad I’ll never get to experience what my mom did to bring me into this world.  The only labor pains I’ll ever know are those that accompanied my three miscarriages.  I’ll never have the chance to turn that pain to a positive in my mind.  I needed that chance, I’ve been longing for that chance.
  • I feel robbed.  It’s not so much that I feel vaginal delivery is “normal,” but it’s certainly less invasive.  My child was conceived in a petri dish, this pregnancy has been sustained by tons and tons of drugs, procedures, and doctor’s visits, and now the birth will be more of the same.  It will be a timed transaction – place, date, and time preset by the convenience of my medical providers.  It will be another procedure written in my calendar.
  • I’m sick of an entirely new set of reminders from the fertile masses that I’m different.  Each well-meaning moron that tells me, “Labor isn’t what it’s cracked up to be,” or “you can always VBAC with your next one,” or “it won’t matter once he’s in your arms,” leads me one step closer to homicide.  I knew I would kick labor’s ass, and I’ve been longing for the opportunity to for 5 years.  I have the pain tolerance of an ox, and I’m ready to have it come into play when something positive can come from it.  And, speaking of “the next child” just reminds me that may likely never happen.
  • While I’m not scared of surgery, I am scared of the possible health implications.  Since I continually win the medical complication lottery (seriously, who gets diagnosed with 6 different diseases/conditions all before they’re 30?), I find myself certain that this C will result in endometriosis adhesions growing out of my uterus.  Yes, it happens.  Or that major abdominal surgery will set off my clotting disorder.  Or my yet-to-be-determined spondyloarthritic disease.  Or that, when you’re as infertile as I am, more scarring in the uterine cavity is never a good thing.  Especially when the combo of endometriosis and a clotting issue mean you’re in for a lot more laparoscopies down the road.
  • I’m frustrated that this birth feels like just another in a long line of confrontations with unhelpful, risk-averse, blanket statement doctors.  I haven’t seen an MD since February, and my case hasn’t been looked at in all that time.  (And, clearly, a lot has changed since then.)  Yet, the NPs and midwives continue this game of telephone.  Gathering my questions, presenting them to “some doctor” (one who may or may not have ever met me), and then coming back in the room and poorly communicating their answers.  For 6 months I’ve been told it would be dangerous for me to remain pregnant past 39 weeks, but now that they must schedule a c-section it’s been scheduled for nearly 40 weeks.  The NPs helpful response?  “Well, we’d sure like to do it sooner, but we don’t have any surgical availability.”  After one doctor told me in February that my lovenox was the only thing sustaining this pregnancy, now they’re taking me off of it without a second thought on Monday.  No discussions, no explanations, just a simple, “Your chart says for you to stop at 36 weeks.”  And, to my question of whether or not we could try an external cephalic version to flip him?  The friendly nurse replies, “Absolutely not.  Not with your history!” Oddly, that’s not remotely OK, but delaying delivery and taking me off my meds is totally fine.  This is not how I pictured my end of pregnancy care.
  • And, I’m angry that this is the end of the line.  I want to meet him more than anything, but I’m not ready to be once again un-pregnant.  Aside from the fact that I have physically felt the best I have felt in 10 years during this pregnancy, I’m also not ready to let go of him.  Especially since I’ve wasted so much time lately hating each kick that reminds me he is breech.  Especially since the medical system has been the only one to weigh in on when he arrives.

Clearly, one list is much longer than the other, but that doesn’t mean that the first list isn’t on my mind.  It is.  Constantly.  And, it’s why I’m such a mess.  Where do I get off feeling like I have any right to be upset over a c-section?  I know better.  I mean, I know better women than I who just lost wanted pregnancies, who failed yet another cycle, who’ve moved on to a life sans children, who’ve suffered more heartache and pain than anyone should ever endure.  Yet these past few days have sunk me lower than I’ve been since the death of my mother.

I have no answers.  This is hard.  And overwhelming.  And terrifying.  The risks are so high, and the territory so uncharted.  For me, infertility always had an element of misery.  Misery’s not all bad.  It unites the community, it can make the highs feel higher, it can be powerful and reaffirming to let it wash over you.  But, I’m so frightened to be spending these last few weeks of pregnancy in misery.  What does it say about me?  What does it mean about my ability to successfully parent?  What does it foretell about the future if I can’t ever get past these few final road bumps?  I’ve often bought in to the normative language that the ALI and PAIL communities frequently use – the phrases “finding a resolution to infertility” and “living after resolution to infertility.”  I doubt the accuracy of those phrases now.  I doubt that resolution will ever be possible.

On the verge…

… of parenthood?  Of breakdown?  Of both?

I keep trying to figure out why it is that I’m having such a hard time writing about my pregnancy here.  The posts flowed so much easier when I was under the influence of Gonal-F and endlessly waiting for the next laparoscopy, the next cycle, the next miscarriage.  At first I thought it was the inevitable IF guilt.  That deep-seated uneasiness with the fact that I was “moving along” while others were left to do the same things over and over again in the hopes of a different outcome.  Or left to rightfully rail against the very concept of hope itself.  And, yes, that guilt did factor in; but, I think, less than I initially thought.  Ultimately, the primary issue is I don’t know how to live and write equally in the lands of fear and joy – a skill that pregnancy after IF requires.  I’ve known what I felt, what I’ve wanted to say, what I’ve secreted away in my mind these past many months, but I just don’t know how to put it to paper.  Or even if I can put it to paper.  I’ve returned to the realm of the bogeyman, where it feels as if what I think, what I say, what I write will automatically land me in the bad graces of those unseen beings who decide my fate.  The simple act of sporting this belly feels like a daily act of hubris, for which I’m constantly sure I’m in for a rude awakening.

In trying to decide why this all feels so, I’m struck by how similar the IF and PG-after-IF emotions I’m feeling are.  Top of the list at the moment is the seesaw.  With twice weekly non-stress tests at the perinatal center I feel like I’m, once again, living from appointment to appointment.  Every three to four days my psyche is formed by the lines on the NST ribbon and the words of that day’s nurse practitioner or midwife.  One day I’m told how grand I’m doing (“minimal weight gain, stellar 1-hour glucose screen, you’re a rockstar!”), and the next I’m discussing the possibility of a looming c-section (“he’s still breech and, since we’re taking you off of the Lovenox at 36 weeks anyway, we might as well just do a c around that time!”).  A week ago one of my favorite midwifes poo-pooed the early c idea (“you’re still so early, and there are things we can try!”), only to have another preferred practitioner inform me this Monday that I had suddenly developed polyhdramnios (too much amniotic fluid) and we, “desperately need to get to the bottom of this!”  In a few short hours I trek an hour north again for a full afternoon of ultrasounds, NSTs, blood tests, and consults.

I’m exhausted.  Even at its best spending 5-6 hours each week in the car on the way to and from appointments is tiring.  Another 3-4 hours each week in waiting rooms and on exam tables doesn’t help.  Adding in the need to keep up with my full-time job during one of the busiest times of our semester brings me close to the edge.  When you factor in the frequent Braxton Hicks chipping away at my physical and mental stability I’m pretty much done for.

But all those stressors are the easy ones.  The ones that aren’t that hard to write.  The ones I start my therapy sessions with.  The ones that get me pity from most ffergiles and justifiable dagger-eyes from those still waiting to parent or finding peace in the decision not to.

Then there’s the much louder chorus of other concerns for which I have a private concert.  Most days I wake up waiting for the first kick or rumble.  As I pray for it to come, I run through what life post-still birth would look like.  I watch it play out from outside my body; me, sitting in silent grief and despair in our darkened bedroom, the mister bringing me food and handling the obligations of daily life as he cries alone in the shower.  Our families not knowing what to say and, likely, taking it even harder than we do.  After all, we’ve walked these halls before.  The failed cycles, the dashed dreams, the early losses go, if not unfelt by those in our inner circles, at least a lot less felt than for those of us with front row seats.  Soon, these morbid morning thoughts are replaced with anger, nearly all of it directed solely at myself.  What have I been doing for the past five years if not running and screaming from medical office to office demanding something was wrong?  Insisting I was sick?  How could I relentlessly pursue diagnoses in one breath, while doing everything in my power to become pregnant in the other?  I often feel shamefully selfish, and that’s really hard to admit.  For 4.5 years I’ve allowed the words “brave,” “determined,” and “driven” to shelter, protect, and uplift me.  Now I often feel like a fraud and a failure.  If we lose him, I am to blame.  My body did it.  And, most of all, I should have known better.

But, then he kicks.  Or he hiccups.  I catch a glance at the nursery.  Or I sit down to work on my shower thank you’s.  The mister gets misty in the eyes looking through the story books his parents gave us.  Or I find myself subconsciously rubbing my belly.  And it all melts away.  I’m quite easily the happiest I have ever been in my life.  I love my husband beyond words as he talks to our son and dreams of the future.  I miss my mom desperately, but I’ve never felt as connected to her as I do in these on-the-verge-of-mothering moments.  The contractions and kick counting are often overwhelming, but they always remind me that I’m living a moment in time I truly never thought I’d see.  For all that I’ve dreaded showers over the past five years, my own were beautiful and surprisingly cathartic.  And, not the least of all, I feel the healthiest I have in my adult life (no “unknown rheumatalogical condition” back pain or rashes, no endo constipation or crippling cramping, no Hashi’s fatigue or brain fog, no PCOS weight gain or hunger pangs).  Life is really, truly, deeply wonderful.

And, at the same time, life keeps on moving and fear keeps on sneaking in.  In the past week I registered for daycare, set up an appointment with our desired pediatrician, started really putting the nursery together, and continued planning for my maternity leave from work.  Yet, each time I cross one of these items off my to-do list I can’t help but feel like I’m adding them to a “what we’re going to have to undo” list.  I feel like I’m laughing at fate by planning for a child that may or may not arrive safely.  I can’t help but see myself un-registering, appointment cancelling, un-prepping the nursery, spending the summer in my desk chair.

The seesaw keeps rocking at the peak of a mighty mountain and I know I’m destined to fall off.  I’m just not sure which tranquil valley or cursed forest I’m perched above…

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…

Why’d you give me your mother’s card? and other questions

I’ve never been big on Valentine’s Day.  I just don’t get the premise.  A day set aside to tell your loved ones you love them?  Shouldn’t that be every day?

Granted, as a kid it meant candy hearts, paper cards, and chocolate.  But, those hearts tasted (and still taste) like chalk, the cards always devolved into a game of “whose parents are so poor that they had to give out the crappy cards?,” and, I know I know, I HATED chocolate as a girl.  Only the onset of menstruation really changed that one.  Yay?

So, as I awoke this morning to over a foot of fresh snow on the ground (on top of the existing 10+ inches), to absolutely no communication from my employer that we were getting so much as a late start, and to an email from my boss telling me she wasn’t coming in so I’d have to and be the sole person responsible for the department today, I wasn’t feeling particularly festive.  After dragging my mopey behind out of the shower, I started to post to Facebook:

Valentine’s Day?  M got me a freshly snow blown driveway; I gave him my endless appreciation.

When I got downstairs to the breakfast table, however, I found a card addressed in my husband’s handwriting to “Mom,” propped up next to a little black box.  Huh?  Clearly he’d gotten me a gift, but why was he giving me his mother’s card?  Wait, who gives their mother a Valentine’s Day card?  Hold up a minute…

Through the tears I opened said envelope to find a card picturing the both of us with little N’s NT scan picture nestled in between.  Through more tears I read the message from my men – my husband and my son.  By the time I opened the necklace the tears were flowing so quickly I couldn’t quite make out the beauty of the mother’s necklace (two intertwined hearts) through the surging stream of tears.

You win, Mr. But IF.  Well done.

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There have been a lot of questions lately.  What will be the outcome of this pregnancy?  Where do I fit in the IF universe?  How can I help those still in the trenches?  Will I be a good mother?  Will labor be complicated?  Will I like my new MFM?  Will he have answers for me?  When we the electrician and drywaller get the future nursery done?  How will I find the time and energy to plan a surprise 60th for my mother-in-law the same weekend as my shower?  How should I react to my aunt’s sudden pronouncement that I must now drive over 800 miles round-trip in the third trimester to attend the shower she’s suddenly decided to throw for me?  Why, when we’re so close to getting what we’ve dreamed of, did I experience a severe bout of crippling depression two weeks ago?  Will HR ever give me a straight answer about my maternity leave?  Will the snow ever stop?

Each question deserves its own post, but just so many posts have gone unwritten lately due to fatigue, long work hours, and, above all, an uncertain mind and voice.

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Last year on Valentine’s Day we drove up to the RE 9 weeks, 2 days pregnant, and drove home knowing our child’s heart had stopped beating.  Witnessing the global outpouring of love and joy (and commercialism) that this day brings as our own hearts broke into a thousand little pieces just made me feel numb.  The following day we went to our weekly Friday happy hour and I ordered the largest beer I could get in the company of friends and colleagues who knew of our infertility and pregnancy.  It allowed me to skip the questions; it enabled them to just jump to whispering, “I’m so sorry” over the din of a crowded restaurant.  Last year I wasn’t asking questions, I was just struggling to feel something, anything, even if it was just inebriation, as we waited for our own bloody red Valentine’s present to begin the coming weekend.

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Asking questions is the province of those with time and unspent emotion on their hands.  I’m whirling in them now because there’s not much else to be doing.  Baby N is kicking and thriving, baby stuff is arriving on our doorstep at an unsettling pace, showers are being planned, and my new doctor is proving to be even more kickass than the one I left behind.  While last year I trudged zombie-like through the day – following our scripted path home from the RE, running into the coffee shop to get the biggest cup they had to offer and running into all our neighbors and their 2.5 children, sending emails and working at my desk with a dead fetus inside me – today my mind flits and floats with a lightness and inquisitiveness that only the content can know.

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.

Insidious IF

It’s been six days since I was released from the RE.  Six days since we saw that undeniably human-shaped fetus wiggling around in my womb.  Six days since I had some reassurance that something might go right for once.  Apparently six days is about all the unassisted hope I can muster.

I’ll start by adding that (thankfully) I have an appointment with my therapist this afternoon.  Seems we’ll have plenty to discuss.  And here’s an additional caveat that if you’re in a fragile mental space this post is not for you.  If negative thoughts, frank discussions of miscarriage, and angry rants are not in your best interest right now, then stop reading here.  It’s about to go downhill quickly I’m afraid.

Dear Lord how do you survive the constant worry?  Since being released from the RE last Wednesday, I’ve already come to feel mentally battered and beaten into a pulp.  After becoming accustomed to the weekly reassurance of good-looking ultrasounds at the REs, the prospect of no more ultrasounds any time soon is enough to push me over the edge.  These past few days I just can’t stop reliving each of my miscarriages.  I can’t talk happily about this pregnancy (though I’m trying for the mister’s sake).  I can’t even allow myself to do anything about the fact that my pants are starting to get too snug.  All I think about is what it would feel like to have a new pair of maternity pants or a belly band arrive the day I start miscarrying.

I know the worry will never completely go away (like, for the rest of my life), and I know that is normal.  That one of the few things fertiles (including my therapist and OB) have said to me in the past several weeks that hasn’t immediately made me want to punch them.  It’s true, in the worry regard I’m likely as normal as the mister’s kid-spouting cousin.  All new parents worry about the health and well-being of their children.  As much as I’d like to argue that the fact that I have three children I’ll never meet makes my worry worse, that’s just not productive and, most likely, not true.

I guess, more than anything, I’m just frustrated with the medical industry and it’s total disregard of worry as a treatable medical complaint.  After starting to embrace a future where I would NEVER have to look an OB/GYN in the eyes again (GPs can do a regular pap, people!), the piss-poor hands-off attitudes of these “specialists” have me irate.  If one more medical “professional” tells me something is not “medically necessary,” I plan on sending them all my counseling bills.  Nickle and diming me on a 5 minute ultrasound is just costing me and my insurance company that much more for mental health services.  Infertility is an insidious ass and invades each and every aspect of your being; to deny me an NT scan, additional blood work, or an extra ultrasound because I don’t fall on the right side of their actuarial tables is a daily middle finger.  Where were these medical professionals when I was diagnosed as infertile at 25? Where have they been the last 4.5 years, the last 3 miscarriages, the last tens of thousands of dollars?  I was breaking their projection models then, but instead of extra testing I got a swift kick in the behind and a “good luck, you’re on your own.”  And, what doctor thinks I WOULDN’T gladly pay out of pocket for extra monitoring after all the time, money, and heartache was have put into IVF?  WHY do they insist that I must come off Lovenox because, “ouch, those bruises look painful, you really don’t need to keep doing that!”  You know what is painful?  Miscarriage.  And I’m not even talking the mental pain…

I’m a mess because of tomorrow.  It will be my first (and likely last) appointment with the maternal fetal medicine doc, and my first true OB consult with my OB (previous visits have been coded as GYN).  I’m expecting a several round knock-out fight, and don’t quite know which of us will come out on top.  My RIs plan got me PG, my RE takes the credit and calls the RI a “witch doctor,” the OB tells me I’m normal and on “crazy” and “unnecessary” medications, and the MFM (who I’ve not yet met) will almost surely tell me I’m wasting his time by being there.  So much for the added peace of knowing you have a whiz-bang team of experts there to guide you through the bumpy ride.

Ultrasound at 9w 2d

The human-shaped blob, complete with placenta and umbilical cord.

All the while, I’m terrified.  I look at my latest ultrasound, I see the human-shaped blob, I recall what it looked like to see the blood flowing through the umbilical cord, and all I can think is, “Wow, it’s big.  This miscarriage will surely hurt worse than the last one.  Especially if they send me home from the ER with a collection jar again after declining to do an ‘elective’ D&C on a Saturday.”

And then, other times, I look at that ultrasound and it all melts away.  Yes, I’m furious that it’s all I have to hold on to.  I’m concerned it is all we will ever get to see and hold of our little one.  I worry that this is as good as it will get.  But, some small part of me still squeals with delight to see that blob with a head and flippers.  Am I really justified in my rage, or am I just becoming an overbearing mother that wants to order the million-pack of school pictures already?  And then I sigh and scold myself for thinking too far ahead.  For opening up to hope.  For too easily dismissing insidious IF.

Help! I need somebody!

And, not just anybody.  I need a doctor who will treat my thyroid.  Who knew it could possibly be this hard?  But, I’m getting ahead of myself.

I waited with a fair amount of restless impatience on Wednesday for my latest round of beta results.  And, not just beta and progesterone, either.  I was pretty annoyed on Monday when I discovered my first beta draw didn’t also include a TSH check.  It’s been a standard part of my workup with every other (negative) beta for the past 6 months, so why they left it off this time is beyond me.  So, when my blood was drawn at 7:30am I requested that a TSH be added.  I got minimal push back from the nurse, but I’m used to fighting.  Anyway, blood exited the veins, and I was told I’d hear something by 11am.  At noon I hadn’t heard a thing so I gave in and called.

That phone conversation is hard to paraphrase, so let’s just do this Shakespeare-style.

Me: Yes, I’m calling for my blood work results from this morning.

Nurse: Uh, yea.  Still pregnant.  When do you want your ultrasound next week?  Wednesday, Thursday, or Friday?

Me: Wait, what?  What was the value?  What was the TSH?  How’s the Progesterone?

Her: Um, I gotta open your chart back up. Gimme a second. [Gum smack, gum smack.]  HCG was 256.  That’s fine.  When do you want your ultrasound and who is your OB?

Me: [Doing the math on the fly] But, that didn’t quite double from my 139 on Monday.  Are we really not doing another beta?  I won’t get anything else until over a week from now?  What about the other values?

Her: I don’t know what to tell you.  Everything’s fine, so there is no reason to retest.  You can see the rest of your results in the portal later today.  I already closed your chart again.  Call your OB.

Me: I don’t have one!

Her: Well, that’s silly.  Get one.  We will release you at 8 weeks and won’t help you from that point on.

Me: But I’m barely 4 weeks!  I’m not calling one.  Not yet.  I’ve had to cancel three OB appointments before due to miscarriage.  I’m not doing it again.

Her: Well, I don’t know what to tell you.  How about next Thursday for your ultrasound?  7:30?

Me: [In tears] Wait what?

Her: We’ll see you next Thursday, October 24 at 7:30am.  Call an OB!

After I was hung up on I sent an email to my boss saying I suddenly didn’t feel good and would be going home for the rest of the day.  I stayed home in my pajamas crying for the next 36 hours.  The Mr. and I spent an additional 90 minutes screaming at one another last night about how many more miscarriages we can possibly handle.  He said things like, “I just don’t have the energy to watch you miscarry 9 more times with 9 more perfect embryos!”  I heard things like, “Why did I marry this barren shrew who keeps killing my children?”  It was good times.

Equally good was what I found when I logged in to my patient portal teary eyed on Wednesday night.  Yes, the HCG went from 139 to 256.  Perfect is doubling in 48 hours or less.  Mine was on pace to double at 54 hours.  Not remotely terrible or doom and gloom depression-worthy, but that’s still the emotion it evoked.  After 4 years and 3 prior losses anything less that absolute perfection generates worry.  I’ve been full of worry ever since.

But, it turns out, the beta was just the tip of the worry iceberg.  My amazing progesterone on Monday of over 40?  Yup, dropped to a pathetic 19 despite daily Crinone suppositories and PIO injections.  Oh, and that TSH they had no intention of running?  Yea, about that…

Co-sponsored by the American Association of Clinical Endocrinologists and the American Thyroid Association, 2012’s “Clinical Practice Guidelines for Hypothyroidism in Adults” recommends the following course of action for pregnant women with elevated TPOAbs or Hashimoto’s:

When a woman with hypothyroidism becomes pregnant, the dosage of L-thyroxine should be increased as soon as possible to ensure that serum TSH is <2.5 mIU/L and that serum total T4 is in the normal reference range for pregnancy. Moreover, when a patient with a positive TPOAb test becomes pregnant, serum TSH should be measured as soon as possible and if >2.5 mIU/L, T4 treatment should be initiated. Serum TSH and total T4 measurements should be monitored every 4 weeks during the first half of pregnancy and at least once between 26 and 32 weeks gestation to ensure that the requirement for L-thyroxine has not changed. [Emphasis mine]

When I started this cycle, my thyroid was well controlled on my usual Synthroid dose.  On 9/18 my TSH was a beautiful 0.49.  My redraw on Wednesday?  5.69?!?!?!

On Thursday morning, I wrote my endocrinologist asking what to do.  On Thursday afternoon they left a message on my work voice mail (good thing I skipped work given my hysterical I’m gonna miscarry again crying fit, right?) saying they couldn’t go on what I told them, but needed to have my RE fax lab results to them.  My RE closes at noon on Thursday.  Last night at midnight I wrote a hysterical email to my RE’s nurse basically saying, “Why isn’t anyone paying attention to me?  Why won’t you help me?” (Yes, it was about that eloquent.)  This morning she wrote back saying calm down, we’ve faxed your results.  Later this morning a message arrived from my endo’s nurse saying, “We don’t treat pregnant patients, you will need to talk to your OB.  Who are you seeing?”  I wrote back with the same damn, “I don’t have an OB and I don’t plan on having one!” I gave my RE’s nurse on Wednesday.  And, that was that.

So, basically, by 2 this afternoon, I was left with the following:

  • RE won’t treat my thyroid since I have a thyroid-specializing endocrinologist.
  • Endocrinologist won’t treat my thyroid because I’m pregnant and that’s an OBs job.
  • OB won’t treat my thyroid because, well, I don’t have one.  But, even if I did, my experience has been that OBs won’t see patients this early anyway, so what good would it even do to have one?
  • Oh, and my rural PCP (who isn’t even in the office on Fridays) thinks any TSH under 10 is hunky dory.

Whee!!!

I escaped home from work and started making phone calls again, desperate to get some sense of resolution before the weekend (my 30th birthday weekend!) began.  It went something like this:

  1. Accept I must call a fucking OB at all of 4w4d pregnant.  Hyperventilate.  Explain situation.  Sound like a crazed woman.  God bless the patient receptionist who listened and cared.  Unfortunately, listening and caring doesn’t solve the fact that I’m not their patient, they’ve never seen me before, they don’t have my blood work, and it’s far too early to book an OB appointment with them.  She encouraged me to push my endo a little harder, but, after I told her I was seeing the thyroid center attached to the same teaching hospital their practice is attached to, she acknowledged they tend to not want to treat pregnant women for fear of liability.  Good thing I haven’t had about 5 conversations with my thyroid doc in the past 18 months saying I was specifically there so that they’d manage my care through pregnancy, eh?  Anyway, sweetheart scheduled me in as a new GYN patient (NOT an OB patient) for next Thursday.  Yes, the same day as my ultrasound.  But, at least since it’s a GYN appointment I won’t have to cancel it if I find out that morning I’m miscarrying, right?  Always looking on the fucking bright side.  That’s me alright!
  2. Try and call endo and get an answer that isn’t simply “Talk to your OB.”  Dial.  Press 0 to speak to a member of the staff.   Silence.  Dial back, press 0, silence.  Dial back, press 1 “if you’re a physician or a physician’s representative” (what the fuck do I care at this point?), receive error message that the extension is not available so try another extension.  Cry.  Give up.
  3. Call RE’s nursing line.  Get “Why don’t you have an OB?” heartless bitch nurse on the line.  Simply ask for the slightly less bitchy nurse I sent my emotional breakdown of a portal message to last night to call me back when she has a chance.  Hang up.  Cry.
  4. 30 seconds later, slightly less bitchy nurse returns my call.  She says, “Honey how are you?”  I cry.  And, then cry some more.  She orders me a prescription for 150mcg to replace my 112mcg of Synthroid.  She assures me there is nothing I can do (or that they are really willing to do) between now and next Thursday.  She tells me to always feel comfortable asking for her directly.  As I whimper out a, “Sorry I’m being so unhinged and irrational,” she responds back, “Honey, you have every reason to be irrational right now.  You’ve been burned enough times before and you won’t feel alright until you are holding this baby.  What else can I do to help make this better?”  I just start sobbing even harder.
  5. I call and set up an appointment with an infertility counselor.  Yea, you guessed it, it’s scheduled for next Thursday…
  6. Endo calls back.  He’s ordered a prescription for 137mcg and apologizes for the inconvenience.  He just, “Doesn’t like the confusion of handling pregnant women since usually OBs want to make those calls.”

So, I’ve gone from self-medicating by cutting my pills in half, to shortly having an arsenal of Synthroid prescriptions in different doses in my bedside table.  Not quite sure what the pharmacy is going to make of me, but that’s a call I’ll make for another day.  I can’t handle more phone battles right now.

But, let’s look on the fucking bright side, right:

  • I theoretically have an OB/GYN again for the first time in a while.  (Talk to me about whether this is a bright side when I have to face sitting in that waiting room again on Thursday.)
  • I will shortly have a full party array of Synthroid in all it’s beautiful colors.
  • My RE’s nurse has once again underlined that gold star next to my name denoting, “This chick is batshit crazy, handle with care!”
  • I managed to stop thinking about miscarrying for nearly an entire day since my focus instead was directed toward my thyroid.
  • It’s Friday.
  • I always wanted to have kids by 30, so at least I’ll be able to say I was technically pregnant on my 30th birthday this Sunday.  Close enough, right?