Finding me

How many times have I made promises to write more?  To return to the blogosphere?  To reinvigorate my Twitter presence?  Too many.  Far too many if you count the silent thoughts that went unrecorded.  So, this is definitely not me making more promises I won’t keep…

But, I had a realization yesterday.  As I sat with my therapist and reviewed dad’s health (re-hospitalized, poor, and fading), N’s sleeping (non-existent), my marriage (strained), my career (overwhelming), and my health (rocky and ignored), she said something that surprised me.  As much as I’ve come to respect and embrace my need for our sessions, I’ve still always subconsciously conceptualized therapy as a highly narcissistic thing.  What could be more self-centered than an hour exploring the self?  So it felt out of left field when she observed that I seem the happiest when I’m helping others.  Was this just a compliment to help walk me back from the edge that’s become my life?  Had I really fooled her into thinking of me as this give give giver?

But, then, I really mulled it over.  Who am I now?  Who am I beyond a grieving daughter and proud mother?  What makes me me?  What makes me happy?

It’s then that I realized that, where others have hobbies, I have the cause of infertility.  The drive to help the young and chronically ill.  To walk others through the minefield that is an undifferentiated autoimmune diagnosis.  And, I miss that part of me.

Infertility can never be “cured,” but it can recede into the shadows.  It absolutely has for me, especially since the tumult of September.  And, a large part of what makes me me went with it.

I miss my RESOLVE support group.  I miss who I was when I was sitting in the front of that often very crowded hospital conference room.  I miss discussion forums and surprise questions from Facebook acquaintances and teary phone calls from women’s whose menstrual cycles I knew as well as my own.  Being an infertility advocate was my club sport, my crafting, my recreational time.  It’s left an odd void.

Yet, my relationship with infertility is still forever changed thanks to my son.  I can’t go back and feel those feelings as deeply, as wholly, and as painfully as I once did.  They, too, are shadows of what they once were.  And that makes me feel like an intruder in my own identity.  A fraud.

I need to rediscover my role in this community.  Because, yes, my therapist is right.  No past time makes me smile brighter or cry harder than advocating for the rights and opportunities of young women facing infertility and autoimmune disease.

In a wonderful stroke of coincidence, this realization has dawned just as announcements of RESOLVE’s Advocacy Day 2015 hit the airwaves.  I can’t fully commit to attending just yet – my life is a whirl of unanswered questions thanks to cancer – but I pledge now to try and make it this year.  Won’t some of you join me?

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?”

A whole lot of (blog) lovin’ going on

I have to say, when I started this blog I never thought it’d get much traffic.  I shared the link with my core group of infertile friends in the computer, I shared it with my support group, and I shared it with a select few real life friends.  That was good enough.

Suddenly, I’m finding myself receiving e-mails at a rapid clip with some pretty startling bits of news, offers, questions, and surprises.  First, there was the nomination.  Then, the ever-amazing Jay (@the2weekwait) wrote to ask whether I’d like my blog to be featured as Fertility Authority’s Blog of the Week.  (And, of course, the answer was a resounding “YES!”  My blog will be featured in Fertility Authority’s Daily Shot newsletter next week.)  At the same time, many of you have used my contact form to reach out and ask for assistance – tips on managing thyroid disease and infertility, questions about how to successfully run a support group, wondering how they can help fundraise for RESOLVE or become more active as an advocate.  To all of this all I can say is I’m totally not worthy.  I just wanted a place to tippy type out my measly thoughts each day.  How did that act of extreme narcissism result in such a warm and fuzzy giving back feeling?  Blogging is truly incredible.

Aside from totally flooring me, all these offers and queries have made me realize something else.  Whether I planned it or not I suddenly have a (somewhat) powerful voice in this community.  Despite my accidental activism being the topic of my NIAW post this year, I never fully realized how the act of blogging would extend the reach of my influence.  And, that’s a pretty heady realization.

You see, in my “real life” I operate in a professional world in which you always back up your sources, you always do your research, and you eat, sleep, live, and breath your research area until after years and years of immersion in this academic milieu (or indentured servitude) you might slowly start to make your mark.  You may slowly start to have influence.  And, that’s if you’re lucky.

So color me surprised that after a few months of bantering about on the Internet about my lady bits, disdain for doctors and insurers, and the advocacy of others, I’m suddenly some sort of (minor) somebody.  That’s a lot of pressure!

So, I’m going to slowly start passing along a little some of this attention and the resources that come with it on to you.  Separate from my selection as Blog of the Week, I was contacted by another person at Fertility Authority asking the following:

Would you be interested in working together to direct those visitors looking for clinic information to our FertilityAuthority services? We have a toll-free phone support system for folks looking for clinic or treatment information. It’s free, and we leverage our relationships with clinics to get folks in faster, help step them through any cost questions, etc and help all parties throughout the process.

Now, I’ve never had much trouble getting appointments with REs, but that’s out of some sort of dumb luck, or my bad choices in picking sub-standard REs (quite likely), or because with my wonky months-long anovulatory cycles its not like I’d ever be able to plan a consult for a “good” time of my cycle.  I know that plenty of others do have trouble finding and getting quality medical care in a timely manner, and if Fertility Authority can help with that, totally more power to them!  I also bopped around a bit on their site this afternoon and was happy to see reproductive immunology, childfree living, and other topics very important to me represented on the site.  I don’t know how they monetize their services or how their business model works or any other such stuff, but I don’t really want or need to know.  That’s for potential clients to figure out (and if you are a client I’d love to hear your thoughts in the comments below!).  What remains for me to do is simply to say that this service exists, it looks pretty exciting to me, and wish you all well.  If there’s one thing you can never have too much of in this IF battle, it’s support and information.  Fertility Authority offers both.  And, that’s pretty damn cool to little old me.

Slow down this ride so I can enjoy my infertility

Hello pals.  I’ve been a bad, bad blogger, haven’t I?  I never anticipated I’d be gone this long, but then again life has a way of always delivering unto me that which is unanticipated.  Dead mother?  Check.  Infertility?  You betcha!  What’s a little bit of why-is-my-life-so-crazy-right-now-of-all-times-dear-god-it’s-the-TWW-I-don’t-have-time-for-this between friends?

I honestly don’t even know where to begin.  And, I guess that’s a large reason why I’ve been AWOL.  So, we’re just gonna roll stream of consciousness style…

I’ve been doing a lot of waiting

First, there’s the obvious – my IUI was 9 days ago, and my pregnancy test is 5 days from now.  I have no idea how I feel about either of those things.  Knowing what we know now, that we didn’t know when this cycle began 29 long days ago, I have about 0% certainty that this cycle actually worked.  My endo was much, much worse than we ever knew before, my symptoms have definitely been flaring (and it’s not all psychological… because they were before righty went missing), and last month’s total fail after tons of work and effort has me sour to the whole sperm and egg make embryo make fetus make baby thing.  Since I’m so totally convinced this whole exercise has been a work of futility, I’ve been more than a bad, bad blogger, I’ve also been a bad, bad infertile.  In the past 29 days I’ve eaten tons of gluteny goodness, I’ve had a few cups of coffee, and (look away! look away!) I went to and fully participated in a brew fest last Saturday (4dpIUI for those of you who are interested).  I haven’t had a drink since we started trying again earlier this summer, but on Saturday I stopped giving a shit.  I wouldn’t be me if I weren’t stressing out about it a little bit after the fact, but all-in-all I’m happy with my decision.  I did EVERYTHING right last month, and didn’t have an inkling of a positive; maybe this minor rebellion will result in a different outcome?  I drank quite a bit around O time with my unlikely ectopic, and my February miscarriage was conceived over a Christmas break that was definitely not devoid of alcoholic delights.  Maybe my eggies are like their grandpa and just need a little booze to get them going in the morning?

Next, no, I haven’t heard anything about the Hope Award.  Ever since the voting closed last Wednesday I’ve been holding my breath each time a new email arrives to my inbox.  While it’d be totally cool to win, I’m just excited to hear the announcement so that we can celebrate as a community with the lucky winner (no matter who she or he may be!).  We all do so much endless, lonely waiting; it’s nice to know there is some positive news on the horizon for one member of our community!

Finally, I’m waiting for Mr. But IF to get home from a work trip.  He flew out Monday and is due back sometime in the wee hours of tonight or tomorrow morning.  The pattern is always the same when Mr. But IF goes out of town.  For the first few hours I embrace my new-found single-hood.  Then, likely before his plane even touches down at its final destination, I start remembering how truly much I need him in my life.  I’m not the mushiest person in the world, but absence makes the heart grow fonder and all that jazz.  When he returns I’ll be sure to remind him of all the ways I missed him – I had to take out the trash on Tuesday, I had to empty the cats’ litter boxes, and I even had to suffer the comical indignity of an oh-s0-wonderful friend assuming his nightly PIO injecting duties.  But, at it’s core, I just missed my friend.

While I’ve been waiting lots of exciting and excruciating things have been happening

Have ya’ll heard the news from our good friends Candace and Chris at Our Misconception?  So I avoid putting words in their mouths, here’s what the wrote me earlier this week:

Alright so here’s the skinny… I was contacted about a year ago by MTV for their show on Infertility. So # 1 didn’t really seek this out, but my husband and I thought ok its either going to be some young snookie type chick that started trying last week or us, the real infertiles. […]  So we put ourselves out there and shared every bit of our highs and lows that come with IF. Also something to note, we were not paid to do the show. Both of the couples (myself and another GREAT couple) did this simply for awareness and advocacy.

So, that’s right, this Sunday at 2PM EST MTV will be airing (the cringe-worthily titled) “True Life: I’m Desperate to Have a Baby.”  The God awful title aside, I really hope this will be a positive pop culture depiction of the ups and downs of the infertility journey so many of us face.  The AtlanticSlate, and The New York Times can write as many (good and horrible) IF-related articles as they want, but MTV’s target audience probably isn’t driving up those articles’ page clicks.  And, let’s be honest here, wouldn’t it be nice to have one hour free from “16 and Pregnant”?  I just wish I got MTV… well, kind of… not really…  Also, during the episode, Candace and Chris will participate in the #TRUELIFE1in8 Tweet Chat, moderated by @FranMeadows and @hopeful_journey.  Pretty cool stuff, no?

On the other side of the spectrum, I think my bloggy meltdown commenced when I read this gem (warning: read with a glass of wine and a bevy of curse words at the ready).  A few days ago I tried to blog about this, but all that came out was incoherent rage.  Today I tried again.  I hoped time and distance would allow me to form a more polished response to Mr. Saletan’s intentionally antagonistic “every embryo is sacred” diatribe, and I think it has.  This letter is all I can muster.

Dear Mr. Saletan,

In your July 16 article “The Boy Who Lived” you crassly wrote:

Every year or so, doctors herald the arrival of a new embryo test, certified by the birth of a healthy baby. But the babies you hear about are the lucky ones. For every success, there are dozens, hundreds, or thousands of embryos that failed the evaluation. You won’t see their pictures, because they’re never born. They’re flushed away.

From the start your word choice, clearly chosen for shock and awe rather than accurate reporting purposes, told me what type of article I was reading and what type of author I was dealing with.  You and so many others operate in the naive belief that reproduction is cut and dry.  Sperm meets egg, embryo results, embryo becomes fetus, and fetus becomes baby.  Any alteration of this order, any intervention in this path, is anathema to all that is “natural” and “right” in the world.  You blindly ignore that nature already ends an estimated 40% of all pregnancies completely on its own, most before a woman even knows she is pregnant.  The American Pregnancy Association reports that, “anywhere from 10-25% of all clinically recognized pregnancies will end in miscarriage.”  Or, to be more accurate with our terminology, spontaneous abortion, as this is what is used for any pregnancy that ends prior to 20 weeks.  We don’t you mourn those unrealized pregnancies?  Why don’t you write to mourn the loss of those pictures on the wall?  Four million babies are born in this country each year, meaning that a full 1 million pregnancies end in miscarriage.

Let’s compare this to the number of embryos you say are “flushed away” as a result of failing genetic evaluations.  According to RESOLVE, infertility impacts 7.3 million people in this country.  According to the American Society for Reproductive Medicine, only about 3% will resort to advanced reproductive technologies like in vitro fertilization (IVF).  That gives us a total of 219,000 infertiles pursuing procedures like IVF.  The next step gets a little trickier, so I’m having to resort to clinic-specific data.  I’ve been with two REs in two different states.  My current (a very large, very popular, very high traffic clinic that uses many advanced technologies) performed genetic testing on embryos in only 4% of their 2,318 IVF cycles in 2011 (the last year for which statistics are available).  My former clinic (a small one-man-show office) performed preimplantation genetic testing (PGD) on 6% of their 208 IVF cycles in 2011.  If we assume that these stats are about average, that means about 5% of those 219,000 IVF patients will perform genetic testing on their embryos in a given year.  That leaves 10,950 patients pursuing IVF with PGD.  In order for these patients to discard the same number of “flushed embryos” as nature does in a given year, each party would have to be individually responsible for the destruction of 91 embryos each calendar year.  If you think that sounds like a realistic estimate, Mr. Saletan, then I have some news for you…

I’ve been battling infertility for almost 4 years, and in the process have endured 3 spontaneous abortions.  The last one this past February happened at 8 weeks after seeing wiggling bits of embyonic blob and hearing the heart thump, thump, thump away.  Yet, for whatever reason, that embryo stopped growing, my body dispelled it, and my dreams of parenthood were again dashed.  Having lived through that loss, genetic testing becomes much more appealing.  Not only to avoid the pain and suffering that came along with my loss, but also to avoid the brash and offensive response I received from the medical establishment when I presented myself to the nearest ER with an OB/GYN unit on a Saturday to attempt to collect my now-dead embryo for testing.  “It’s a Saturday,” they said, “And you aren’t an emergency.”  As the tears welled up they explained with finality, “There’s nothing we can do for you.  Miscarriage is common.  Check in with your doctor on Monday.”  At my last straw I begged and pleaded for them to help me find a way, any way, to get these products of conception tested in the hope that no future embryos would suffer a similar fate.  I was handed two sterile collection jars and my discharge papers.  I flushed my embryo at home that night while waiting for a dilation and curettage that was scheduled two days too late.  I would do anything not to have to live through that trauma again, and genetic testing is one option that promises respite from future flushings of that sort.

And, finally, what of the research value these “flushed ones” have to offer?  You yourself write:

Embryo screening hasn’t made the world a sadder place. It has made it better. It has prevented cystic fibrosis and other terrible diseases. If you worry about unborn life, it’s better to catch genetic problems early, at the preimplantation stage, than to discover them in the womb many weeks later and abort the pregnancy.

And on this we wholeheartedly agree.  But you then go on to question which genetic tests are worthy and which are not.  To identify tests for genetic predispositions and certainties that don’t merit consideration because it risks, “[…] discarding embryos over the possibility of breast cancer, which rarely strikes before age 30, and early-onset Alzheimer’s, which doesn’t begin till 40 or 50.”  Nature, you say, created “genetic misfortune” and “the ruthlessness of selection,” and in this you implicitly suggest that we should comply.  Or rather, when we don’t comply, when we try to fight back, when we dare to flush, we should not “[…] hide the tragedies and the cost.”  But if nature is behind these tragedies, why do you only single out the tragedies of IVF?  Why not the 1 million spontaneous abortions resulting from naturally occurring pregnancies?  Why not an article on those flushed ones?

If I’m forced to use your overly emotional language, I myself am more stricken by the tragedy and senseless loss of those million natural miscarriages than I am those embryos discarded after failing genetic testing (no matter the type of genetic testing to which they are subjected).  And, this is for one primary reason.  Those natural embryos are the ones that are unceremoniously flushed.  Trust me, I’ve flushed a few myself.  I sought testing, I sought answers, I sought assistance, and I was told to go home and quietly miscarry like the millions upon millions of women before me who had done just the same.  When testing is performed on IVF embryos, those results matter.  They are recorded, they are used to inform patients, they are used as the basis of medical journal articles.  The embryos that are inspected via this testing are respected far more than the million silent flushes happening across this country every year.  In their 2009 article “Destroying unwanted embryos in research: Talking Point on morality and human embryo research” Thomas Douglas and Julian Savulescu highlight exactly this point.  The article is highly quotable and I struggled heartily with what to reproduce here.  Should I highlight their argument that, with over 220 million natural embryo deaths each year, “[…] we ought to do something to reduce this staggering death toll: we should try to discover its biological basis and we should prioritize the development of therapeutics to prevent it given that it would be a greater cause of human death than all other causes combined”?  Should I paraphrase their moral thought experiment of what to do if “[…] a refrigerator containing 1,000 unwanted embryos has fallen onto a small child and is crushing her to death”?  Ultimately, I’ll leave it with their final concluding phrase, the only phrase I feel that really brings solace to those of us who face these difficult decisions as I hope, Mr. Saletan, you never have to.

Embryos have a special moral value when they are a part of a plan to form or extend a family. When they are not part of a plan to form or extend a family, they can still have a special moral value: as a means of extending knowledge and saving or improving the lives of people.

In which I brag

So, I have a whole lot of catching up to do.  Officially pregnant neighbor due a month after I should have been; another child-free, child-obsessed holiday in the books; a weekend with the in-laws spent discussing baby names and pregnant (teenage) relatives; and, perhaps the most fun (?!?) of all?  Apparently I have a new Gonal-F/Lupron side effect.  Holy panic attacks, Batman!  Totally terrifying, btw.  But, I’ll save all that for the post in which I recount my steady march toward hormone-induced insanity.  Something to look forward to, eh?

Today’s post serves a much more exciting purpose.  Today, I finally get to tell you my wee bit of news that I’ve been dangling out there for, oh, more than two weeks!  And, here it is in graphical form:

Hope Award Nominee

That’s right!  I’ve been nominated for RESOLVE‘s Hope Award for Best Blog for the post I wrote back in April to commemorate National Infertility Awareness Week.  My Join the Movement post joins four others (Almost a Father, Fertile Healing, Inconceivable!, and Just Stop Trying and It Will Happen — go, read them, now!) in the running for the Best Blog title.  The winner will be selected via an open online vote occurring from now until the end of July.  (So, yea, after you’re done reading, go, vote, now!)  Then, come early November, one lucky lady or gent gets to get all dolled up and attend RESOLVE’s swanky Night of Hope gala in Manhattan to accept the Award.  And, who says infertility removes the glamour from your life?

On a more personal note, I remember voting for this award in past years and thinking, “Wow, how amazing is it that these brave women have opened up and laid it all out on the line (online) for those of us grasping for some sense of normalcy and belonging?”  Can I just say how incredibly surreal it is that I now find myself among that number?  Seriously, just pinch me already!

And, the timing of this announcement couldn’t really have come at a better time for me.  I first was notified of my selection via email during another endless Friday afternoon work meeting.  A work meeting, I should add, during which I was mentally running through my checklist of things to pack for our whirlwind trip down to the Walk of Hope just a few short hours later.  Talk about reinforcing to me the accuracy of what I wrote several months ago.  Speaking of the many new endeavors and distractions I took on in the months following the termination of my ectopic pregnancy, I wrote:

All these avoidant behaviors, these selfish distractions, they did a lot more than help me pass the time.  They did something that no amount of openness with fertile friends and family members could have ever done.  These activities normalized my experience, they let me know I was most certainly not alone in my feelings of pain and powerlessness.

As I sit here, newly returned from my second Walk of Hope, looking forward to tomorrow’s peer-led support group meeting, and still feeling the deep sting of our latest failed cycle, receiving this nomination reminded me yet again that infertility does not need to be a solitary battle.  It’s sure as hell a whole lot easier when it isn’t!

So, congrats to my fellow nominees and to the many, many others who contributed posts to this year’s Bloggers Unite Challenge.  You may not always feel like (I know I often don’t), but your words matter more than you can ever know.  From a former anonymous reader, thank you from the bottom of my heart for helping me find my own voice and put it to good use.

Pre-departure checklist

So, we leave for the Walk of Hope tonight.  I’m equal parts excited and exhausted just thinking about it.

The Walk itself will be brilliant, no doubt about it.  Last year I left with a sense of inspiration, hope, and optimism that was startlingly uncomfortable to this lifelong pessimist.  This year I’m rolling up prepared.  I’ve packed my happy shit-face grin, positive thoughts, and acceptance of outdoor group yoga.  I’m excited for a vacation from my self.

I’m also excited to leave the frigid north for a beautifully sunny and warm D.C.  I’ve never liked the heat and when I accepted this new gig last summer I embraced the climate change that came with it.  That is until, on our walk home from trivia night on Wednesday, JUNE FUCKING 19th, I saw frost on the grass.  Bring on the 90 degree weather, D.C., momma’s missed it!  Shorts and sandals?  Check and check.

And, finally, we get to see family and friends, revisit some of our favorite sites, and get out of Bedford Falls, Stars Hollow, the quiet little sleepy village we now call home.  My gift to my very newly engaged gal pal down south is packed as is my appetite for all things not the pizza, McDonald’s, and pub grub one can get in this town.

But, just thinking of the drive and lack of sleep ahead of us, and the missed opportunities behind me, has me a little weary.  Mr. But IF and I slightly amended our previously discussed travel plans.  Last night I threw a (can I blame this on PIO?) temper tantrum, and finally decided I wasn’t willing to go straight from our driveway to the Walk without access to a shower or a blow dryer.  I’m by no means a high maintenance gal, but I would like to have the opportunity to brush my teeth before mingling with my IF heroes.  So, the 6.5 hour midnight drive has been scrapped.  Mr. But IF leaves work at 7, we’ve got a hotel reserved along our drive, we’ll get to sleep around 12:30, and be back on the road by 6:30am to make it to the National Harbor in time.  That means I have the time between 5 and 7 this evening to check the oil in my car, get gas, pack, tidy the house, and all that jazz before I spend the next eternity on the road.  I’ve certainly cut things closer, but I fear I’m also packing a boatload of worry.

Bruise

My left abdomen. I call this “As the bruises turn.”

And the worry is likely packed right next to the needles and sharps container I’ll be bringing with us.  Anyone have tips on how to sneak off to a bathroom with your husband in his Aunt and Uncle’s house exactly at 7pm in order to have him jab you in the ass with a giant needle?  No-one?  In related news, you remember how upset I was about the Lovenox not being nearly as horrific as I was warned?  Let’s just be glad I don’t plan on wearing a bikini to the Walk.

I won’t, however, be packing the witty T-shirts I’d planned to make.  And this has me sad.  I’ve been mentally designing these things since April, and we even named our team around the t-shirt theme, but they are not meant to be.  Call it another casualty of moving to the frozen northern tundra.  I just couldn’t get my hormonal TWWing ass up to the craft store to get the iron-on transfers I needed. C’est la vie.

But that regret has me thinking of other regrets.  I’d love it if next year (because, we are certainly going again next year!) we could form a bigger team.  What can I say, ask my trivia team, I’m a competitive person at heart and our little team of two can’t contend with the big guns on the fundraising leader boards.  And, more importantly, I’d really love to share this experience with others besides Mr. But IF.  Next year, I’m packing my team.  And we WILL have t-shirts.

Finally, I wish I had broken my silence in our small town with the aim of doing a little more local/grassroots fundraising.  The burden has fallen unfairly on the backs of friends, family members, and other infertility sufferers, and I don’t doubt a box in our public library or on the counter of our regular hangout brewpub, or an announcement on our village’s social networking site would have resulted in some donations.  Navigating our IF during this move (both professionally and geographically) has been difficult.  When you live in a company town, your personal life has a way of getting straight back to your employer.  I don’t know if I’m ready for that yet.  We’ll reassess after my 3-year review.  So, I suppose, I’m also packing a little apprehension and uncertainty about my self-identified role as an outspoken IF advocate thrust into small town life.

But, the issue of my anonymity may have to be forced sooner rather than later.  It’s premature to say much, but I received a tremendously exciting email this morning.  Like, an I-let-out-a-little-squeal-in-the-middle-of-my-meeting-when-the-notification-popped-up-on-my-iPad email.  More details to come, but suffice it to say it’s about my work on this blog.  I’m equal parts humbled and speechless.  And, I’ll have to make room in my suitcase for my growing ego.

Next stop, National Harbor!

Up, down, all around

These past few days have been strange.  You know that thing where you feel like you are watching yourself from outside of your body?  Yea, that.  Since Friday I’ve felt sort of up, down, and all around.

The Up

I think I’m actually doing a decent job managing the TWW anxiety.  I’m just trucking on with my normal life with minor modifications, herbal tea instead of coffee, a butt shot after dinner, and a compulsion to eat all the things because the PIO and HCG booster combo have turned me into a bottomless pit.  Otherwise, life as usual.

One of the (very few) positive upshots of my cycle having been delayed three months, is that I’ve known for ages now what the protocol would be and what that would mean for my mental stability.  It was decided early on I’d start post-O HCG boosters, so the moment that decision was made I was starting to prepare myself for the fact that there would be no definite D-Day, no moment to circle on my calendar in big red marker, at which we would know with absolute certainty that I am or am not pregnant.  So, yes, my first beta is on Monday, and, yes, I’m sure I’ll worry about the result, but ultimately I know it is very unlikely that that first beta will say much of anything.  Barring the unlikely scenario that my beta comes back abysmally un-pregnant despite 4 HCG boosters over the past two weeks, all Monday will give us is a starting point.  It will be at least another week of blood draws before we know whether that starting point is the start of a few days or start of 9 months.

Honestly, I thought that this new booster head game would break me.  But, it’s largely done the opposite.  I’m not really living my life to a TTC wristwatch because I don’t know when I’ll get answers.  The timeline’s been removed from my life.  And, that’s oddly liberating.  Now, don’t get me wrong, each time my purse grazes my bruised and lumpy PIO butt, each time I decline alcohol at social events, each time I do my daily Crinone suppository, I do get the reminder that these are heady days.  Sitting at 9dpo implantation should have just happened, and I could actually be somewhat pregnant right now.  But, on we go with life as usual.

The Down

Though, not entirely life as usual.  I had actually mentally sketched out most of this portion of the post this past weekend, but something Mr. But IF said made me step away and cease writing it.  Rather than delve deep, I’m just going to skim the surface.

The weekend was hard.  Sunday was hard.  Father’s Day was hard.

A few week’s ago Mr. But IF G-chatted me the following:

random, but for some reason this year the father’s day stuff is getting to me like it hasn’t in the past

I pick on Mr. But IF sometimes for appearing more detached and less emotional about our infertility than I am.  I complain that he hasn’t raised the same amount I did for the Walk of Hope, I get cranky when he forgets and offers me coffee and beer, I roll my eyes when he doesn’t remember every doctor’s appointment.  But, you’ll notice, all my triggers are tangible things.  Fundraising, food, and appointments.  There’s a simple reason for this.  If pressed to think of examples of ways in which he’s emotionally checked out from this process, I’d be hard pressed to find any.  I’ve never once had reason to doubt his mental connection to this struggle.  I’ve seen the tears, I’ve heard the anger, I’ve witnessed the pain.  But, like many men, Mr. But IF may show his sadness, but he rarely speaks it.  Put simply, the Father’s Day comment caught me off guard.

When we talked about it later, the first thing he did was apologize for saying it.  As I said my own, “I’m so sorry,” he replied, “The last thing I want to do is make you feel worse.”  But here’s the thing, hearing my spouse speak of his pain doesn’t make me feel anything but a little surprised.  Startled because it’s not normal for him to initiate such conversations, but certainly not sadder (or even happier).  My pain is my pain and it is always here, just as I’m sure his is always there, so in no way does acknowledging a personal trigger or igniting a conversation change that pain.  I’ve been at my saturation point for a while now, so while there are peaks and valleys on the emotional line graph of my life, nothing anyone can do or say will change the unit of measure or enlarge the overall plot field.  And, I hope in reading this (if not in face-to-face conversation), Mr. But If accepts that.

As I said, I had a much longer post on this lone topic prepared, but I’ve scrapped it.  I don’t really need to belabor the fact that hearing the happy voices of our neighbors celebrating three generations of fathers in a backyard BBQ on Saturday stung my soul or waking up to the sounds of prop planes swooping overhead in conjunction with the village’s Father’s Day Planes and Pancakes breakfast resulted in instant tears.  And not only do I not need to drag on about those triggers, I absolutely shouldn’t.  I shed my tears on Mother’s Day, on Christmas, at family gatherings, on anniversaries – Mr. But IF deserves his own day of sadness, his own day of grief, his own day to hide from the world.  In frustration he said, “Don’t I get a day to be sad?” and it immediately made me realize that in expressing my sadness I’ve partially boxed out his.  The loudest and most persistent voice in the room should’t always win the battle.  I’ve got to find a way to let him eek out his own space to deal.  And, I’ll start with Father’s Day.

The All Around

Throughout the goods and the bads one thing has remained constant.  We’re busy.  Blissfully busy.  Distractedly busy.

We’ve carved out our summer into a million weekly rituals:

  • Monday night “Beer and Buffy” at our house with whatever assortment of friends wants to attend.
  • Tuesday day of rest and laundry.
  • Wednesday night trivia.
  • Thursday night game night at a colleague’s house.
  • Friday night happy hour.
  • Saturday Farmer’s Market.

I never considered myself a social or outgoing person, but having these distractions has been a tremendous blessing.  Sure, I had to have Mr. But IF give me my butt shot while our friends were eating on our back patio last night, but we’ve learned to roll with the punches.  And I’m getting good at making a mean mock-tail.  Now, if only the waitress at trivia would stop loudly proclaiming each week, “Wait!  You aren’t drinking AGAIN?”

This week promises to be particularly busy as we look forward to traveling 6.5 hours to the Walk of Hope this weekend.  I’m sure I’ll post much more on this later, but suffice it to say things got a lot more complicated in the past few days.  We used to live much closer to the Walk, so attended last year.  The combination of the amazingly positive experience we had last year, with the knowledge that a trip back this summer would provide a handy chance to visit with old friends and family, lured us back again this year despite now living over 6 hours away.  So, we signed up, we raised funds, we exceeded our fundraising goal.  Rock on.

But, as I’ve discussed before, since I uprooted us and moved us several states away from our home of the past 8 years last summer, Mr. But IF has had a lot of difficulty finding work.  I moved us to the middle of nowhere with a promise from HR that spousal hiring was “totally what we do,” and have watched my husband struggle mightily with trying to find a permanent position.  He’s currently working two jobs – a full-time temp job that ends June 30 and a permanent part-time job where they can only pay him for 9 hours/week.  The combo of two jobs leaves him working this Friday until 7pm.  No work, no pay, and with a recent bathroom renovation to pay for and having only been at the 9hr/wk job for a couple weeks, he’s not willing to take the time off.  And, I get it.  I really do.

What I wish I didn’t have to get is the fact that that means we have to somehow sleep, drive 6.5 hours, and get to the Walk between 7pm Friday night and 8am Saturday.  The best plan we could come up with?  Yea, we’re leaving here at 1am on Friday and going straight from our driveway to the National Harbor.  For those of you that will be at the Walk, I apologize in advance for my tousled hair, bad breath, and overall appearance of having slept in a car.  You’ll have to forgive me, but I will have, err, been sleeping in my car.  Sadly, this is not remotely the craziest thing we have ever done in the name of IF, so it’s all good.  In fact, what an exciting adventure!

We get to relax after that, though.  Time with family and friends including a newly engaged dear friend who I can’t wait to pamper with gifts and girl talk.  Exploring our nation’s capital (always one of our favorite past times).  And, yes, walking alongside some of the most awesome people in America.  Totally worth the drive!

Before I sign off for the day I’d be remiss not to mention that a RESOLVE supporter has agreed to match all new donations up to $5,000 to this weekend’s Walk of Hope made between yesterday (June 17) and Friday (June 21).  As I’ve said countless times before, I believe strongly in the mission of this organization, so I’d love to see a new fundraising record reached on Saturday.  If you have even a dollar to spare, please consider donating.  You can either donate to the Walk directly or send me a message to ask for the link to my personal fundraising page and contribute to my team.  Thanks in advance!

Crossing one finish line and preparing to pull the trigger

Enough mixed metaphors for you?  It’s late-ish, I’m tired, that’s the best you’re getting.

Ok, yea, it’s not that late but I’ve got another 5am drive to Dr. Soulpatch staring me in the face tomorrow, so it might as well be 3am.  The glamorous life of an infertile – nothing else like it!  But before we address that drive, let’s take a moment to celebrate something (for once).

Today I reached my individual fundraising goal for the Walk of Hope.  A goal I set five times higher than I did last year.  An increase I initiated because last year I raised nearly eight times more than my 2012 goal.  I’d like to say I’m proud of myself, I’m thrilled with these achievements, and I’m happy to see hard work pay off, but you know what?  That’s casting the spotlight in the totally wrong direction.  The curtain call is owed to the amazing women and men in my life – from my oldest high school friends to my IF gals in the computer to my husband’s astounding extended family – who demonstrated by putting pen to check (or, more appropriately, typing credit card number into secure site) that we most certainly aren’t on this journey alone.  Taking a 1-mile stroll through a park with some of the bravest and strong women and men you’ll ever meet?  That’s the easy part.  Caring enough to read my story, to click my link, to acknowledge the validity of infertility as a worthwhile cause, and to help break the silence of infertility?  That’s truly amazing.

Meeting the goal has caused a certain thread of thought to start running through my brain.  I find myself reevaluating years of deep-seated feelings of isolation and loneliness.  No, I don’t think those two emotions will ever be removed from the infertile’s playlist, but two consecutive years of fundraising for this event has got me thinking of how the actions of today might help future generations of infertile women and men mitigate those very real feelings.  The loneliness, the “otherness,” of infertility is at its apex in my life whenever I am reminded of the blissful ignorance of the fertile masses.  Nothing makes me feel more alone than when I hear women meticulously plan their pregnancies (“Not to close to Christmas or to baby #1’s birthday!”), when the cashier at the grocery store nonchalantly asks if I have children when she spies chicken nuggets in my cart (“Nope, no kids, I just feel like eating like one while I wait out this 2-week Lupron headache”), or when the you-should-know-better nurse at my endocrinologist’s office tells me she has terrible Hashi’s and it never stopped her from having kids and would I like one of hers (“Well isn’t that amazing… for you”).  I’m sure if you polled a hundred infertile women and asked them about their hardest moments the vast majority of them would stem from interactions they’ve had with others.

And these others aren’t all hypercompetitive bitches either.  They’re often well-meaning grandmothers, small-talking strangers, and otherwise supportive fixtures in your life.  What they all have in common is what we as a society largely have in common – they aren’t conditioned to anticipate infertility and they aren’t equipped to address it when it’s present.  The result is a total blindspot toward the 1 in 8 (and growing) couples in this country for whom our preconceived notions are most certainly not the norm.  Today, it is rare to find someone who truly appreciates the potential heartache of a question like, “When will you have children?” unless they have lived/are living infertility.  I still cringe thinking of all the times I asked that totally normal, socially acceptable question of the women in my life before my diagnosis.  After 3.5 years of infertility and repeat loss I view this question as as acceptable as asking one’s weight, or, better yet, a man’s dick size.  Bonus points for doing it in front of grandma.  Truth is, that’s a highly personal question that can be so very loaded.  I’ve certainly never been at the front of the line in support of political correctness, but knowing the statistics I know now and experiencing the traumas I have to date, I can’t believe this is a question we still ask unprompted in the lightest of social settings.  And we don’t even have to get into the whole “infertility thing” here either.  With upwards of 25% of all pregnancies ending in miscarriage according to some studies and with the miscarriage rate higher for first pregnancies, it’s very possible that when you asked recently married cousin Sally at last weekend’s family reunion about her family building plans that she may have just had (or is having) a miscarriage.  Just hold back and wait for Sally to bring it up, K?

It often doesn’t get better when/if these questions are answered with honesty (whether on the first or five hundredth time you’ve asked them).  Whether the answer is a subtle “We’re trying,” or my typically blunt, “Well, in 3 years I’ve ovulated six times, been pregnant 3, and have 0 live births, pass the gin!” publicly acknowledging infertility comes with its own landmines.  So far on this blog I’ve avoided discussions of the typical things the misinformed masses say – the “Just adopts”, the “Go on vacation,” the “Stop stressing,” and the, “I knew a woman who…” stories – because they are so common they’re comical.  And, most other IF blogs and resources have covered them ad nauseam already.  But, these common reactions to IF further demonstrate how out of touch most of this country is with the realities of human reproduction.  As I touched on yesterday, by the time we are grown most of us have some semblance of what to say and how to act when a loved one experiences a loss.  Sure, things may not always go smoothly, but most folks generally learn to, you know, not tell the cancer patient “At least you won’t have trouble losing weight with how much that chemo is making you throw up!”  Trivializing and diminishing the pain of infertility is a lot easier, though, because most of us aren’t equipped with the words we should say to our infertile loved ones are experiencing emotions far outside our comprehension.  (If you want a great resource check out Resolve’s Infertility Etiquette guide!)

Ultimately, this gets me back to what my fundraising success has me pondering.  No, raising money for Resolve will never take away the loneliness or isolation of infertility, but I do truly believe that the act of raising this money and the grassroots advocacy and outreach work that it will allow Resolve to do will help to minimize the external factors that directly contribute to those feelings.  I notice it in many of my friends and family already.  The act of contributing to an organization like Resolve and the experience of having a friend or family member open up about infertility goes a long way toward validating infertility as a cause and a disease akin to so many others of which we are much more familiar.

According to the Lupus Foundation of America, 1.5 million Americans have Lupus, the Leukemia and Lymphoma Society reports that just over 47,000 Americans were diagnosed with leukemia last year, and the CDC lists the current HIV infection rate in the United States at approximately 1.1 million.  Add all three of those figures together, then add another 4.3 million Americans, and you are about at the current estimated number of women and men – 7 million – experiencing infertility in this country.  Given my recent Lupus scare, my aunt’s leukemia, and my college HIV/AIDS awareness group presidency I don’t remotely intend to compare the severity of these conditions to infertility, but the numbers are illustrative.  I’ve walked in AIDS walks, I’ve supported my aunt’s participation in multiple leukemia walks, and 50 Walks to End Lupus are being held from Oregon to Florida this calendar year.  Did you even know there was a walk in support of infertility awareness?  Did you before you or someone you know was diagnosed as infertile?

Now it is officially way past my bedtime but to part deux of my metaphor.  Tomorrow I get my third and, hopefully, last probing of the week.  Ideally I should get the green light to trigger (aka administer a shot of the pregnancy hormone HCG to initiate ovulation) and then it’s off to the races (well, off to the bedroom).  Trigger, ovulate 24-48 hours later, go at it like bunnies, begin different injections (PIO, Lovenox, and HCG boosters), and wait.  Oh, and wait a long time because those pesky boosters are surely gonna screw things up.  That’s the plan at least.

But, as the now-snoring Mr. But IF asked as he drifted off to dreamland, “What could happen tomorrow and on a scale of 1-10 how bad or good would those possibilities be?”  He’s an optimist that one.  Trained by the very best of course.  His ever hopeful (har, har!) wife.  The options are too many to recount, but in 100 words or less.

  • Follicles could have stopped growing or substantially slowed again meaning we’re delayed.  Sadly, the thing I’m probably more worried about is not the delay but the fact that I’d have to break into another 900IU pen of Gonal to keep stimming.
  • Too many follicles may have taken off.  I had 8 measurable (>10mm) with 2 nice lead (aka bigger than the rest at 15mm and 14mm) follicles on Wednesday.  If any of those 6 felt like catching up to thing 1 and thing 2 I’ll freak a little.  I’m not even cool with the idea of going at it with two follicles and risking twins, but more?  Ugh, when do you call it quits and regroup for the next round?
  • My lining (nice and thick at 9mm on Wednesday) could have thinned out.  Unlikely, but with two Clomid miscarriages under my belt and having never had a nice lining before I’m gun-shy.

Now off to prepare for the excitement of tomorrow with my all-too-typical 5 hours of sleep.  TGIF, Mr. Wandy, TGIF!

Happy Advocacy Day!

So, it’s Wednesday again.  I’ve missed a few bullet-point Wednesdays recently, so I thought I’d return to form. Ready?  Today’s list: Things you can do to make Mrs. But IF a very happy gal:

  1. Write or call your elected representatives TODAY in support of the Family Act (S 881/HR 1851) and the Women Veterans and Other Health Care Improvement Act (S 131/HR 958).
  2. See number 1.

You see, today was Advocacy Day.  I strongly believe we need advocates and Advocacy Day.  Today, 115 brave women and men traveled to Washington, D.C. on behalf of the infertility community to support our cause.  All day I found myself longing to be in the company of these amazing women and men!  Why don’t you review their stories on Twitter at #advocacyday2013?  Better yet, why don’t you stand alongside them and make your voice heard with your own letters, emails, phone calls, and tweets?

And, to put my money where my mouth is, here’s generally what I sent to my senators and representative.  (Though, I added detail to each to personalize it to the congressperson addressed.)

Dear XXX,

I am writing you today as a proud new resident, homeowner, and tax-payer in [City, State].  Last year at this time I was conducting a national job search hoping to advance in my profession.  I received competitive offers from three prestigious universities, but I chose to move to [your state].  One of the primary motivators of this choice was that, aside from being a wife, a professor, and an educated and politically-engaged member of my community, I am also an infertile 29-year-old woman who has struggled for 3.5 years to see her dreams of parenthood become a reality.  Unfortunately, these dreams have as of yet gone unfulfilled, but you can play a large role in helping me make my dreams – and the dreams of so many other [state] couples – become a reality by supporting the Family Act (S 881/HR 1851).

I am one of 7.3 million Americans that has a medical condition fully recognized by the CDC, but that is yet often totally ignored by the health insurance industry.  This time last year I was writing my elected officials in [old state] urging them to follow the lead of states such as [new state] in mandating some form of infertility coverage benefits.  Though your colleagues in the state government have taken a large step forward with the [state law], in-vitro fertilization – a procedure that may hold the key to my becoming a mother – is still excluded from the mandate.  Similarly, countless fellow state residents have found that they are not subject to even this weak state mandate due to the variety of loopholes that exist in the code.

The Family Act will help thousands of people seek medical treatment that otherwise would be out of reach for them.  These women and men are not denied treatment because it would be medically harmful or inappropriate for their situations, or because they are not interested in seeking it out, but solely because they do not have the financial means to secure diagnosis or treatment.  Finding out you have a life changing medical condition is heart-wrenching enough; realizing that your medical condition – in most instances in this country – will not be acknowledged by the insurance plan your employer has selected for you, is even more devastating.  Finding a way to financially assist couples seeking treatment with tax credits is of immense importance.

Last year I founded [old state’s] first and, currently, only RESOLVE-backed peer-led infertility support group.  I was initially unsure what level of attention or involvement this new group would engender, but have been truly humbled by the number of women and men the group reaches.  I can tell you first-hand that countless Americans are in need of your support to help them build their family’s through infertility treatment.  The stories I have heard have been nothing short of heartbreaking.  I have met women whose serious medical symptoms – red flags for endocrine disorders, autoimmune diseases, and anatomical abnormalities that all are and will continue to impact their overall health and well-being – have been ignored because they could not afford to seek out the appropriate medical specialist since visits to reproductive specialists are not covered under many insurance plans.  I, myself, was told last year that surgeries to correct my endometriosis – a lifelong medical condition that impacts my daily well-being and quality of life – would not be covered under my [old state] insurance since such surgeries could “potentially help me become pregnant,” and, as such, were “lifestyle choices” akin to breast augmentation surgery.  Having my bowel removed from my abdominal wall where it had been fused by endometriosis adhesions is NOT a lifestyle choice.  This issue goes beyond the question of whether or not one believes in the ethics or appropriateness of assisted reproductive technologies, and directly to the question of preserving the health and safety of the women and men you serve.

Please help me, my husband, and my countless sisters and brothers in the infertility community bring new [state residents] into the world.

With Regards,

<Insert My Super Secret Identity Here>