Is this thing still on???

Well, is it?  Are any of you still out there?  Does it really matter if you are?

Life’s been bumpy.  No lie.  I’ve been trying to find solace in journaling it out.  But, I’m not very good at accountability when I’m the only one I’m accountable to.  I also think I’m hopelessly a child of the Internet Age.  Even if I’m only typing into a unresponsive void, the knowledge I’m typing it out in a place where someone, somewhere, sometime *might* find my words instills me with greater comfort than filling a leather-bound journal locked in a desk drawer.  Maybe I don’t just marry narcissists?  Maybe I’m a wee bit of one myself, too?

So, I’m here.  I may jot some things down now and again.  And, I can be fairly certain they won’t really be about infertility.  I’ve got to thing of a new tag-line…

That said, “not when, but if” still feels pretty on point.  I really can’t say “when” anymore, without grimacing at the possibility that that when will never come.  When will I have romantic love and partnership in my life?  When will I feel stability?  Simply put, I might not.

But, there’s power in that.  I have no idea where I’m heading.  Nothing in my life has prepared me for anything that has happened in the past 18 months.  I think I’m finally becoming my own person.  Learning this new person.  Exploring the edges of this new person.  And, at 33, that feels pretty long overdue.

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:

Why’d we bother?

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

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

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

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

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

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

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

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

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

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

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

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.

Of blobs and blogs

According to this morning’s ultrasound, the blob has turned into a large, semi-personish shaped thing.  An oblong wiggle-worm with a heart thumping at 170 beats per minute.  Can we all just take a moment and collectively exhale with a, “Holy shit!”?

And, breathe…

As I’ve written before, I’m not quite sure what more to say.  Here’s the update.  I’m:

  • 8 weeks, 2 days pregnant with an increasingly person-shaped gray mass;
  • dreading and relishing the fact that next Wednesday’s appointment will be my last visit to my RE for the foreseeable future (though we’ve got 9 frozen blastsicles stored with them that we shan’t forget);
  • (im)patiently waiting for November 27 and my appointment with the maternal fetal medicine doc (high risk OB) and OB;
  • counting down the days until our NT scan where blob will REALLY look humanoid!;
  • alternatively nauseous from nerves and pregnancy (and nervous when I’m not nauseous, nervous that I am nauseous, and even pregnant when I’m neither nervous nor nauseous);
  • allowing myself to dream up/talk about the way we will announce blob in a manner that respects and acknowledges that path that got us here; and,
  • spending way too much time on Amazon looking at dopplers, ultrasound frames (Christmas gifts!), and other gateway baby stuff (can’t quite muster the “hard” stuff like onesies and little socks just yet).

(Ok, I may have actually just ordered a doppler.  Shhh!)

***************************************************

While I’ve been busy off in brain dead beta worry land, early pregnancy limbo, hoping for a heartbeat holding pattern, and other similar locales, I’ve been a bad, bad blogger.  I haven’t failed to notice that MANY of you have shouted out to me or nominated me for the various rounds of blog awards circulating.  Seeing as it’s taken 4 years, 3 miscarriages, 2 states, and 3 clinics to get to this moment, I guess you could say I fully embrace the “better late than never” mantra.  My next two posts will correct this oversight.  Promise!

Speechless

I’m sorry I’ve left you all hanging for a week.  I honestly haven’t known what to say.  How to act.  How to exist.  For the past 7 days every moment has been full of equal parts hope and dread.  Every sentence has ended with, “We’ll know more next Thursday.”

Well, it’s Thursday.  And we do know more.

This morning Mr. But IF and I woke at 5AM and drove to the clinic.  I was on the table sans pants by 7:15.  We saw a gestational sac, yolk sac, and wiggly 6w2d fetal pole at 7:17, and heard the 115bpm thump, thump, thump of the fetal heart at 7:19.  (My ultrasound pictures are time stamped.  I can’t tell you how happy it makes me to know I’ll always know when we first saw and heard that thump!)

I’m elated.  We’re both elated.  I’m also a good bit speechless.

After so many years and so many heartaches (including the still painfully fresh memory of hearing a similar thump less than a year ago), I’m gun-shy.  I want to cry from sheer joy.  I want to truly believe this is happening.  I want to be able to start speaking in certainties, start planning the nursery, start enjoying this event that I’ve put so damn much blood, sweat, and tears into for all these many years.  And, I really am getting closer.  Closer than I’ve ever been, honestly.  But, I’m not entirely there yet.

I don’t know what to do with myself.  Infertility has been such a huge part of my life.  I’m not quite sure who I am when I’m not squaring off with it each and every day.  When all that remains is the worry and doubt, but not the tireless attempts to manipulate my body into behaving naturally with drugs, appointments, and prayers.  To be frank, I’m not really sure what it is I do around here anymore.

Gushing isn’t appropriate.  It still causes me anguish, and it makes me remember all the times my heart broke when I had to hear of others’ (often well-deserved) victories.  When you are a member of a group united in the pursuit of a common goal, yet only some have the opportunity to realize that goal, it can make for some balancing.  It’s not lost on me that a few months ago I was writing of the pain of coming to grips with a child-free future.

Fretting isn’t right either.  I’ve done that.  Ad nauseam.  It’s a familiar emotion, but it’s not quite accurate either.  We have more reason to hope right now than we’ve ever had, and I don’t really want to let that opportunity pass me by.  I’ve had such a difficult relationship with hope for so long, I’m ready to start letting it back in, even if just a little bit at a time.

So, at least for a while, I think I’ll default to rote updates.  While it seems out of character to divert from tackling difficult emotions head on here (that was the entire reason I started it), it also seems a good bit pointless to try and examine my emotions when I’m not entirely sure what they are.  So, in lieu of making things up or allowing this site to disappear into the ether, we’ll stick to the facts.

 

Today’s facts:

I’m pregnant.

Fetal pole measuring 6w2d.

Fetal heart rate 115.

Next ultrasound and Intralipids infusion on Wednesday.

I have 800 pieces of candy at home waiting for Trick-or-Treat deluge.

Meet the blob

Not gonna lie, kinda feel like I’ve been snorting sunshine and unicorn shit.  I’m so high on life right now I don’t even recognize myself.  This happiness thing is a total mindfuck.

First, I’d like to introduce ya’ll to Blob.

ultrasound of gestational sac

Say “hi” Blob!

That, ladies and gentlemen, is a fucking gestational sac.  A sac IN my uterus (and not my tubes).  A sac measuring 5 weeks 1 day (pretty damn spot on to my 5 weeks 2 day reality).  And a sac that has a rockstar 5,306 beta value to keep it warm at night.  Did you seriously catch that beta?  Last pregnancy my beta at 7 WEEKS was just 2,083.  Blob here is a total overachiever.  I’m smitten already.

I don’t even know where to start with how the rest of my day went.  I mean, the rest of the day pretty much comprised of me floating from moment to moment on a cloud of euphoria.  Have I said this happiness shit feels weird on me?

After meeting the Blob, I “worked” for a few hours before heading to my first counseling session with a new counselor.  I’d scheduled the session to help me cope with what I thought would be, at best, inconclusive news, and, at worst, well, you know what news I thought I was getting today.  Instead I flitted into my appointment a happy person.  What exactly does one do in therapy when they’re happy?  I’ve totally never had that problem before.  Anyway, Dr. H appears to be a brilliant sweetheart.  She actually reminded me so much of my dear friend A, herself a budding psychologist.  Unlike the previous IF counselor I consulted, she didn’t immediately dismiss me for wanting to have a sense of control in the process – to be informed of my lab values, to have a say in my treatments, to keep in close contact with my doctors.  Instead, she said exactly what I’ve always found myself saying.  She explained:

If you know you are a researcher by nature, having all the data points can be a great source of comfort!  I don’t think you are harming anything by recognizing what type of person you are and what type of relationship you need to have with your physicians.  I just wish you could find one that would listen to you a little better and not belittle your coping mechanisms.

Shut the front door!  45 minutes together and this gal already “gets me” more than most people I’ve ever met.  Score!  I return in two weeks, but have her cell number should a crisis arise in the meantime.

Next it was off to my first ever OB/GYN appointment in a very long time.  I mean, I’ve scheduled many OB appointments, but I’ve never actually made it to one.  Imagining having to go to this appointment a few mere hours after hearing, “I’m sorry, I can’t find anything in your uterus” or “I’m sorry, your beta just isn’t rising” literally kept me up last night.  Visualizing walking into an office chock full of giant bellies and murals of newborn pics made me sick to my stomach this morning, and had me shaking uncontrollably as I rode the elevator up to their sixth floor offices.

When I walked in, no bellies.  No pictures.  An empty waiting room with a few no-nonsense receptionists that were immediately attentive to my presence.  (What?)  I had barely sat down when a nurse scooped me back (an OB that’s on time?), and my 2:40 appointment started promptly at 2:40.  Aside from the nurse being unable to find PIO in their computer system (for which she was highly apologetic and did not blame me like so many other nurses before for having the gall to take such unusual medications), my interactions with Anne the nurse were pure gold.  Not once did she say, “Just relax” or “I had a friend who..” (both phrases that were tossed at by my RE’s nurse just this morning).  Instead, she smiled throughout, congratulating me, fawning over the pic of Blob I brought with me, and told me to call whenever I needed anything.  (Wait, what?)

When the doctor entered the room he had the same genuine smile across his face.  30 seconds in his phone went off (oh no!  I’m going to get rushed and ignored again!).  He told his intern he was with a “very important new patient” and he’d have to call her back.  He then apologized for ignoring me for a total of 15 seconds and explained, “Ah, you know, teaching hospitals.  Everybody always wants you NOW NOW NOW!”  We talked my history, we talked my thyroid, we talked his philosophy, we talked me RE.  He kept reassuring me I was in the drivers’ seat, that no questions were silly, that he’d worked with many of my RE’s (who he kept referring to by his first name) before, and that he will never forget the journey that’s brought us here and always respect the unique challenges our IF has created for us.  He said, “I know there is no ‘normal’ for anyone who’s had to go through infertility.  You won’t believe this baby is here until you’re loading it in the car seat, and that’s fine.  Just promise me you’ll let me know how I can help make it a little easier.”  (OMG, am I on candid camera?)

I told him a bit about this year’s ANA drama (see, for example, here and here for the beginner’s guide).  He was downright annoyed at the way the whole thing was handled.  “You mean, they just sent you away with their hands in the air saying ‘Who knows?'”  Pretty much, yea, that’s what they did.  That did not abide Dr. T.  He ordered a full autoimmune workup for me and drew the blood right there and then.  Another more advanced ANA panel, DNA something, Sedimentation rate, C-Reactive Protein, Lupus Anticoagulant, etc., etc.  If anything comes back abnormal, he’s getting me in with their sister Perinatology clinic.  I have found the only proactive doctor left on this planet.  Holy shit did I hit the jackpot!  He also will be monitoring my thyroid (with both TSH and Free T4… woo!) every 4 weeks and adjusting meds as necessary.  He said he’d find a way to get me in for as many ultrasounds as I needed to feel comfortable (OMG!) and that he’ll be there with me through it all.  He gave me his fucking cell phone number!  Yea, my 2:40 appointment?  I left the building at 4:00.  Not one bit of that was me waiting alone in a room.  What the what?

I will follow up with him in 2 weeks (November 7) to go over the findings of the blood work and give him an update on how things are going with the RE.  Assuming all is well (oh, please let all be well!) I’ll be scheduled for my initial OB appointment about a week later.  Someone pinch me.  Is this actually happening?

So, now, it’s off to see the hubby.  I’ve been running all day, he’s been working all day, and we haven’t seen each other since I rolled out of bed at a crisp 5:30am in order to get to my RE appointment on time.  We’ve texted and had brief phone chats, but now I’m off to meet him, hug him, and gush endlessly at a celebratory dinner.  Good night my lovelies, and thank you so much for helping to hold me together all these past months.  You have NO IDEA how much you’ve all meant to me.

Today I am grateful

Today an old online friend sought me out to congratulate me on the news.  She wrote, in part:

I completely get why you left FF.  I read a blog of yours that kind of explained why you left and could sympathize with the need and want to kind of turn to blogging over forums. I think you do a great job at capturing how this journey is going for you. It ‘s probably the least fluffiest blog I’ve read and I like that. I like the realness and rawness to your writing. I’m sure you have to realize those who have found your blog have found comfort in your words and that you’ve helped them in some way or another.

(I really hope you don’t mind I stole your words A!)

Honestly, that was probably one of the biggest compliments anyone could have paid to me.  I suppose I take a sort of sick pride in being the Debbie Downer of the IF blogosphere.  Not because I’m at all interested in one-upping anyone in the overdone pain olympics (I know my story isn’t the saddest or most painful out there by a long shot!), but more because it means I’m doing a decent job at conveying the way that *I* am living infertility.  Hope and optimism have been absent from much of my infertility experience, and pain and suffering familiar bedfellows.  If my writing is raw, if my words sometimes ache and hurt, then I’m succeeding at what I set out to do when I started this blog.  I’m putting some fraction of the emotions I’m feeling out into the ether, and hopefully freeing myself of some of them in the process.

That said, I’m well aware of how one note that often makes this blog.  Yep, But IF’s worrying again, cursing doctors again, depressed again.  The monotony is accurate, but I’m sure it also feels oppressive.  So, today, let’s try something different.

Today, I am grateful.  Grateful for so many things.  Things I should spend more time appreciating, documenting, and celebrating.  Why not take a moment to celebrate some of them now?  So, in no particular order, today I am grateful for…

  • My husband.  His unfailing support, his intellect, his humor.  The joy he’s brought to my life, the sorrow he’s helped me weather.
  • My life.  These 30 years.  Another happy birthday celebrated with friends and family, old and new.  The phone calls, the party goers, the Facebook messages, the cards.  The yearly reminders that I matter to many, even if I often feel that I’m invisible to all but a very few.
  • This pregnancy.  Today, I am pregnant.  No amount of past heartache or struggle should dull the beauty of that simple sentence.  I know all too well that these moments can be fleeting, so I should also know better than to deny the power of these moments.  Once again, today, I am pregnant.
  • My infertility.  Yes, today I am grateful for it.  This month, this year, and this decade I am grateful for it.  Infertility has brought me my LFP ladies, my FF friends, my Twitter buddies, my blogging pals, my support group gals.  How one disease that wreaks so much havoc, can also add so much to one’s life is beyond me.  I’m grateful for my day with C and R on Saturday.  For friendships with women I’d never have met if infertility hadn’t entered my life.
  • My friends.  The text messages, phone calls, and emails from three friends named A.  Celebrating weddings past and planned.  I wish I was better at staying in touch sometimes, but know I love you all and you’re regularly in my thoughts.
  • My cats.  Yes, even when they wake me at 3AM wretching in the carpeted hallway.  (I most assuredly have crazy cat butt parasites.  C’est la vie.)
  • Sunshine on my birthday.  And the marshmallows roasting over our fire pit it enabled.  And, yes, even the sugar crash that hit later last night.
  • The Internet.  Without the support it has offered I would have lost my mind long ago.  Without it, I wouldn’t have met YOU.  That’s definitely something to be grateful for.

A life lived in pieces

If you’ve spent any amount of time living or watching someone else live an infertile life, you’re almost certainly familiar with the common complaint that, with infertility, life often boils down to a never-ending progression of waiting periods.  For women with regular cycles (something I’ll NEVER understand) these periods are set at about two weeks.  Menstruation begins, 2 weeks of waiting and tracking until ovulation takes place, 2 weeks of waiting and hoping fertilization and implantation takes place, 2 weeks of waiting for betas to get stronger and a gestational sac to be found in the uterus.  My waiting periods haven’t been as predictable – anywhere from 45 days to 8 months to get a period in the beginning, dozens of cycles waiting for ovulation that never came, 4 months waiting for a useless rheumatology consult, a 9 week pregnancy that just stopped growing – but they still fit the pattern.  I, like so many others, live me life in moments ordained by biology, medicine, and physician convenience.  There’s not a moment in these past 4 years where I wouldn’t have been able to articulate what the next milestone was – the next surgery date, the next scan, the next doctor’s appointment, or the next treatment.

Having crossed to this confusing land of early pregnancy after infertility, things aren’t really all that different.  As the news of yesterday’s strong beta washed over me, all I could think of was what Wednesday’s repeat draw might reveal.  If I allow myself to accept that Wednesday’s might be fine, I open my calendar and start to wonder how difficult work will be the day of our ultrasounds, the day we might learn it’s another ectopic, that it’s growing too slowly, that it doesn’t have a heartbeat.  I’m mentally plotting out ways to explain unplanned vacation time on the day the bleeding starts.  I’m still living my life in pieces, but I don’t know what puzzle they go to.  I arrange them all, keeping each in play, waiting for future clarity that may or may never come.

That’s not to say there isn’t tremendous joy in our life right now; it’s just that it’s a little different than some might expect.  I called my aunt yesterday with our update.  She spoke of fate and angels and having dreamt of babies and my dead mother the night before.  She had joy, even as she commented through the phone, “Honey, you sound so sad.”  Hearing her happy made me so very, very happy, but I’m not quite there yet.  I’m happy to live her happiness, but my own will have to wait a bit longer.  I just haven’t gotten to that chapter of the story yet.

But, where am finding, if not pure joy, at least some relief?  It’s really in the silly things, I suppose.  After a night away in NYC for work on Friday, I returned home on Saturday exhausted and content from a day spent exploring the tiniest bit of what the city has to offer.  I just wanted to put on my pajamas, curl up on the couch, and watch endless hours of television as cat#1 kept me warm, cat#2 kept me entertained, and husband#1 enjoyed his boy’s night away in a hotel with his best friend.  It was while deciding what television series to gorge on that I realized I’m slowly starting to find some peace, or at least find ways to fill the void of another round of anxious waiting.  I can’t speak excitedly to my aunt, and yesterday’s walk past the baby aisle in Target still caused sweat to bead up on my upper lip, but I can return to some shows left unwatched once pregnancy plot lines developed.  I watched the first few episodes of the new season of Parenthood that I had all but given up on; I picked back up on Bones which I had declared unsafe territory mid-season 7; I added Call the Midwife to my cue (but still haven’t hit play).  So silly to be measuring my mental state by television viewing choices, but I’ll take progress wherever I can get it.  At this stage of the game voluntarily watching a show with a newborn is about as groundbreaking as buying that first onesie is for a “normal” pregnant lady.

Yet, I’m still living this life in increments.  I’m still trying to get through each episode as quickly and efficiently as possible, knowing that at any moment the show may have to be dismissed from my Netflix cue.

I’m living this pregnancy like I’m watching these shows.  Enjoying while they last, hoping to see the finale, but preparing for an unresolved end.

This is the post

So, this is the post.  That post.  The post I’ve thought about since I started the blog; the post I’ve been terrified to write since 7:06am yesterday morning.

It’s the post where I tell you I’m pregnant.  Or at least a little pregnant.  Definitely closer to pregnant than not.

Back in June, on our 7th wedding anniversary, I typed out a few lines on my iPad while hiding the tears and shielding the screen from the colleagues I was spending the day with at a mandatory work retreat.  My first injectable cycle had failed.  That post was easy.  A few simple and familiar words – I’m not pregnant.  Additional complex and familiar emotions – grief, anger, despair.  More comforting and familiar responses – emails, flowers, gifts, cards, phone calls, shared tears, and virtual embraces from across the globe.

This post isn’t simple.  This post isn’t familiar.  This post,  more than any other, will fail to convey what I’m thinking and feeling.  To be able to convey those messages, I’d have to have a grip on my own emotions in the first place.  That’s something I definitely don’t have as I mentally flit like a humming bird from exhaustion to ecstasy and worry to wonderment.

I’m thrilled.  I can’t stop my mind from the inevitable.  I’ve calculated my due date (1 day shy of our 8th wedding anniversary), I’ve started looking up reviews of perinatologists and OB/GYNs, I’ve held the Mr.’s hand as I’ve said the words, “I’m pregnant.”

I’m cautious.  Having experienced this moment before – October 2011, May 2012, January 2013 – I know how quickly joy can turn to sorrow.  I know how it feels to walk into a maternity ward to terminate an ectopic pregnancy, I know the extreme grief even the briefest of chemical pregnancies can elicit, and I know that a heartbeat and multiple consecutive strong ultrasounds offer no guarantee of a child.  Sometimes this caution manifests in a desire to live each and every second to the fullest – how many times can I chant “I’m pregnant, I’m pregnant, I’m pregnant!” before this pregnancy ends?  Other times, it evokes an uncharacteristic superstitious nature – “You know better than to be calculating due dates this early, you fool!”

I’m ashamed.  I’m embarrassed to have tested this early when so many others have the tenacity to wait for the official word of the blood test.  I’ve been taking home pregnancy tests since the day after my transfer – first to test out the HCG trigger, and then in the hopes of catching a second line returning.  I saw the faintest glimmer of a line return yesterday, and it has darkened some today.  Yet, at only 5 days past a 5 day transfer we’re still in crazy early testing territory.  My official blood test isn’t even until Monday.  Yet, when I saw that faint second line yesterday, I couldn’t hold it in.  I shared it with my long-time IF friends, with Twitter, with Facebook (though, my under my blog persona, not my real one — I’m not that delusional!)

I’m uprooted.  Less than 48 hours since the first flicker of hope entered my heart and I’m already experiencing that familiar identity crisis of the knocked up infertile.  Where do I fit now?  What is this blog for?  Who can I turn to?  How do I comport myself?  Who am I and what am I doing here?  I’ve been pulled out of my old school, the surroundings, teachers, and friends I know are gone, and I’ve not quite matriculated to my new school just yet.  What do I write to the friends back home?  Sunny optimism – “This place is as great as you always thought it would be.  I’m sure you’ll be transferring soon, too!”  Injured honesty – “I’m not that sure I like it here.  I miss you and I’m terrified.  Please let me cry to you.”  The minimal brush-off – “Have a great summer!”

I’m bargaining.  I’m working down my battle-hardened, experiential checklist.  The outcomes for this cycle were negative, miscarriage, or child.  Now we’re on to miscarriage or child.  One line crossed off.  A few more darkening lines, and I’ll tick off the box next to “Not another chemical.”  If we’re blessed enough to have a few normally rising betas I’ll likely strike out (in pencil, though, not pen) “Not a second ectopic.”  If we make it to a heartbeat I’ll check, “Get at least as far as last time.”  And, for any step at which I might falter, I have the memory of the familiar and the knowledge that I’ve survived each one before.  Miscarriages I know, lasting pregnancy I don’t.

But, I’m also pregnant.

For now.