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:

Do or do not. There is no try.

Yes, my reproductive endocrinologist quoted Yoda this morning.  So, yea, that happened.

Today was my post-op appointment/WTF appointment/IVF consult.  (Clearly, when you’re driving an hour each way, it’s good to make sure you can cram as much as humanly possible into one trip.)  The visit started nicely enough.  We were escorted back to the comfy couches in what I’ve titled the “Den of Solitude.”  The name’s part a dig at the obscenely dark wall color, and part remembrance of the long-lonesome wait we had there for my D&C that came a day too late.  Awesome room, awesome memories.

The doc reaffirmed that surgery went fabulously, that my suspicious right tube looked “wonderful,” and that I was young.  We discussed my visit with the reproductive immunologist during my last failed pregnancy and went over that specialists’ recommendations.  I said, “he suggested Lovenox, which we added to the last two cycles, and Prednisone, which we didn’t.”  What I didn’t say was, “The Prednisone which the NP said we couldn’t do we didn’t add.”  So, guess what?  6 months after I first sent an email inquiring about Prednisone, I was told, “Why don’t we just try some Prednisone and TI or IUI?  It works for a lot of my immune patients!”  Head, wall, again.

The mister (likely seeing dollar signs flowing through his head) seemed into that (insurance-covered) option, I said, “No.”  We were exactly in this place 15 months ago.  We walked into our IVF consult, we got our calendar, we paid our down-payment.  We left with a plan.  A plan that got derailed by a money hungry clinic, an asinine insurance system, and a interstate move.  I wasn’t leaving this second IVF consult with another aborted IVF plan.  I simply said, “We need to move on.  We need to try something different.  We need to know that there is an end in sight and our lives might one day be back to normal.  This is the step we need to take before I have no stamina left to keep trying.”

The answer?  “As Yoda says, ‘Do or do not.  There is no try.'”

Basically, the next 15 minutes were filled with yoga recommendations, self-help book suggestions, mantra repetition, and the soft-eyes of my close-talking RE glaring uncomfortably into mine.  I’m not a feeler, I’m an analyzer.  I rarely talk emotions, but regularly talk statistics, clinical studies, and journal articles.  There is no more certain way to bring on my rage than to turn my quest for medical insight into a “how do you center yourself?” discussion.  I grinned, I bared, I pinched the skin between my thumb and pointer finger so tight that I can still see the redness 7 hours later.  But, ladies and gentlemen, we have a plan.  (One that I’ll surely relay in fuller course in the next several days.)

See, here’s the thing with conversations that go like this.  I truly do understand the medicine behind relaxing and minimizing the worry.  As someone with both endocrine and autoimmune disorders I get how putting your body under unnecessary stress triggers a cascading waterfall of nasty, hormone- (and thus fertility) impacting issues.  Back in the days before we moved and when we still lived in civilization, I did acupuncture, I hosted a support group, I sought counseling.  I’ve drunk the Kool-Aid when it comes to believing that reducing one’s stress is a can’t hurt, might help accompaniment to traditional infertility treatments.  (And, lest you misunderstand, this is a far, far cry from saying that believe that “Just Relaxing” will cure my infertility.  That, my friends, is just a steaming pile of bullshit.)  It’s exactly this belief in the power of minimizing freak-outs that fuels my hatred for Doc Yoda’s attitude this morning.  You know what stresses me the fuck out?  Knowing I get about 10 minutes with my doctor once every 12 months and having to spend all of it answering questions about my yoga practices.  So, congratulations doc, you just added so much more stress to my life.  A+ effort and all that.

I treated the rest of the appointment like a junkie hoping they’ll get a discount if they listen to their dealer talk about their new pitbull.  Doc’s got the stuff I need, be a good girl and let the doc talk.  I left with my scripts for steroids, stims, estrogen and progesterone support, intralipids, and Lovenox.  Oh, and a healthy dose of stress.

As we were preparing to leave the consult room, Mr. But IF asked a few more questions about the lap findings.  Basically, our third/fourth/fifth utterances of “are you sure my tubes are fine and there wasn’t an endo annexation of my bowel occurring?”  Yes, tubes fine, no, minimal endo.  I replied, “That’s a relief.  I expected worse due to how it looked last time and how many quality of life-impacting symptoms I’ve been dealing with.”

“Are you alive?” he asked.

“Err, yea.”

“Then the quality of what you do with that life is totally up to you.  Only you can improve that.”

[Blank stare.]

“Have you read about the man with no arms and legs?” he queried.

“Uh, no?”

“You should.  If he can find joy, so too can you.”

I left my comments regarding my mother’s joyless chemo unspoken.  I got my drugs.  I got my probing.  I got the fuck out.

My parting gift?  A giant middle finger from my body.  I knew it was too good to be true when he said we could start stims as early as tonight if I appeared to be baseline.  The ultrasound showed a giant follicle/cyst on my right ovary, and bloodwork revealed a mildly elevated P4 and LH.  I could have ovulated (and left a corpus luteum cyst behind), I could be about to ovulate (and be witnessing the final growth of the follie), or I could just have a rock star lazy non-functional cyst hanging around.  Either way, I’m neither ready to start IVF nor ready to take Provera.  Bloodwork on Friday to check what’s up.  More waiting!  Huzzah!

I wonder if I can “use the force” to get this cycle going?  Probably not seeing as I fully inhabit the dark side…

Back in the desk chair

My, does this post feel mighty overwhelming and a good bit overdue.  What have I been up to, you ask?  A little travelin’, a little workin’, a little gettin’ sliced open.  You know, same old.

Did you notice my site went down?  Down for like a couple weeks?  Yea, that caused the jitters to set in big time.

Luckily, a few Abita Ambers in a jazz club on Frenchmen Street calmed those jitters right down.  Mmmm… New Orleans.  Mr. But IF and I went down there a couple years ago for a vacation/family wedding and have been itching to go back ever since.  Luckily, with my professional organization selecting NOLA as the site of its annual meeting this year our dream came true.  (And, came partly paid by my employer at that!)  NOLA is rapidly becoming one of my favorite cities in America, and I’m already anxious to get back again.  This time it won’t be for a wedding, or a conference, or any other sensible purpose – it will be to embrace this city I’ve learned to love so quickly.

I was a little worried that going back to New Orleans would stir up old wounds.  Our first pregnancy was conceived there in 2011.  The only thing it reminded me of, though, was the love I feel for my husband.  (Yes, even as we wandered the French Quarter cranky as all get out.)  It also reminded me of the need to embrace these in-between moments in our TTC journey and wring every last drop of joy out of them.  We played pool in a local bar with a ragtag bunch of local casino dealers, we snuck back to the hotel in the middle of the day for a non-procreative romp in the sheets, we swayed to the music.  I lived life so fully and so outside of the manner I’ve become accustomed to.  It was beautiful.

Our flight home last Monday came far too early, and our travel time was made far too long by a miserable delay in the 10th circle of hell that is LaGuardia.  We arrived at our door around 5pm, we welcomed our usual bunch of Grilling, Growlers & Buffy friends over for dinner and an episode at 7pm, and my saintly mother-in-law arrived around 9:30.  A few hours of shut-eye and my mother-in-law and I were off to the RE bright and early the next morning for my laparoscopy.  In the car by 6:30am, at the office by 7:30am, walked into the surgical suite near 11am.  I love how like molasses time becomes when you’re in the hands of a medical practice.

The surgery went well.  Actually, better than expected.  After our last lesson in “be careful what you believe when a doctor says it” I’m not going to put much stock in doc Soulpatch’s quick post-operative exclamation of “It all looked good!” but my anesthesia-cobbled mind was happy to hear there were fewer spots of endo regrowth than anticipated and that my questionable right tube looked “wonderful.”  I’m proceeding cautiously until I have my final post-op appointment with the doctor next Tuesday, but it sure was better news than I expected to wake up to seeing as Mr. But IF and I spent large portions of our transit time back and forth from NOLA discussing what life would be like if I woke up to hear they’d removed both my tubes.

This was my second laparoscopy in 18 months, so I was thankfully no stranger to what recovery would be like.  Actually, the most uncomfortable moment of the entire ordeal was probably hearing the words, “nothing in your vagina for two weeks” while sitting with my mother-in-law waiting to go back for the procedure.  (Having just flown off to NOLA for a week, Mr. But IF had to work the day of my surgery.  World’s Best Mother-in-Law drove 3 hours to our house to drive me an addition 1 hour to my doctor to sit for an addition 5 hours for my surgery, to drive home another hour with a drug-addled passenger, and, finally, drive a final 3 hours back home in time for work the next day.)  So, yea, recovery was what it was.  I watched far too much Netflix, ate too many popsicles, and slept for what seemed like a solid 24 hours on multiple days.  Surgery was last Tuesday, I took my first trip out of the house on Friday, was back to work on Monday, and threw another Buffy night for a party of 25+ on Monday.  Either I’m a masochist or Mr. But IF is trying to collect my life insurance – I’m not sure which.  Either way, I’m 1w1d removed from surgery today and feel fully myself again.

I’ve had a lot of thoughts running through my brain about endometriosis lately.  Why is it so poorly understood, why are the paths toward diagnosing, managing, and curing it so under-explored, why is this debilitating disease so ghettoized within the medical, research, and patient communities?  That’s another post for another day, but suffice it to say now, dear readers, I’ve got angst.  I’ve got bitterness.  I’ve got frustration.  And I’ve got them all because even 1 week after my “it wasn’t that bad” second surgery I sit here feeling so much more human than I did 1 day before said elective surgery.  Regrowth was minimal, no serious anatomical issues were discovered, and the surgical glue is practically still drying in my three incisions, but I feel so much better now than I did just over a week ago.  No pain, no constipation, and a supremely healthy sex drive.  (Timed wonderfully, of course, to fall smack dab in the middle of my “nothing in the vjayjay” period.)  Immediate relief from a surgery I was told was unnecessary, for a disease I was told I didn’t have for so long, for a case so mild I’ve been told to be thankful.  I’m not thankful, I’m pissed.

So here I am back in the desk chair and back to reality.  A reality of waiting, of taking deep breaths, of wondering what’s around the corner.  A reality so different from my NOLA dreamland.  I’m back to counting the days.  5 until our consult with the RE.  How many until we can start IVF?  How many days of stims?  How many days past retrieval?  How many days until transfer?  How many days until the beta?  How many days until I miscarry?

Less than 2 weeks ago I was swaying in d.b.a. as John Boutté sang:

Don’t waste you time being angry
when a moment’s better with a smile
if you feel you’re time’s been wasted
waste it here a while
– “At the Foot of Canal Street”

My scarred body may be back in this desk chair, but perhaps I should leave some of my mind in New Orleans?

Electives

I actually used to like electives. You know, the classes no one could make you take? The ones where you got to explore in an academic setting the bits and pieces that made you you.  My senior year of high school was divine.  In addition to my usual butt-load of advanced placement (AP) courses, I indulged in taking both band and chorus.  As drum major, band was my first love, but hanging out in the choir room with my primarily chorus kid friends and high school musical co-stars was a lot more exciting than, say, physics.  Intro to Acting, the Philosophy of War and Peace, Film and History, Race in the Age of Empire – I spent my high school, college, and two graduate school careers embracing that word “elective.”

In the past several years, however, “elective” has been redefined.  No longer the fun extras in my life, my health conditions and physical needs are now viewed in various ways as “elective.”  This became clear to me again yesterday as I sat through my (predictably underwhelming) pre-operative consult with the fertility clinic.  After reviewing my medical history, current medications, past experiences with anesthesia, and all the other bells and whistles, the NP began her pre-scripted laparoscopy/hysteroscopy speech.  I learned of all the many ways I could die, be rendered permanently sterile, or be reliant on a colostomy bag for the rest of my life as a result of the surgery I’ll have again on August 20.  I was asked to give my consent to undergo removal of my tubes should the surgeon deem it necessary, and was advised that a hysterectomy would be performed should that option be medically necessary to save my life.  Yet, none of that discussion was unanticipated.  Yes, it made my heart race, but I sucked it up and, with a fair amount of been-here-done-this-before positive thinking I nodded in agreement.  Until the following was uttered: “And, you understand that this procedure is entirely elective.  This procedure is not necessary for any reason other than potentially improving fertility.”  No, that one startled me.

Don’t get me wrong, I completely understand that I will not die tomorrow if I do not have this lap.  Endometriosis has not caused my heart to be one beat removed from its last, and in the world of “will I die in an hour if you don’t operate?” my procedure is about as elective as they come.  But, I do take offense at the sentiment that this procedure is only being performed in the hopes of improving my fertility.  Honestly, my hopes of that ever happening sailed off into the sunset a looong time to go.  Like, after the first lap that didn’t result in immediate fecundity.  The knowledge that we are moving to the very expensive and very not covered by insurance land of IVF following this thankfully-is-covered-by-insurance laparoscopy definitely impacted our decision to move forward now, but by no means am I only doing this lap to improve the likelihood of a positive IVF outcome.  I’m doing it for a whole host of other “trivial” reasons, such as the following:

  • To be able to have a bowel movement more than once every few weeks;
  • To minimize or even eliminate the extreme leg, back, and pelvic pain I feel EVERY SINGLE DAY;
  • To make it possible for me to actually work and function for the first three days of my menstrual cycle, rather than be tied to a bathroom variously vomiting, thinking about vomiting, changing my super/overnight pad/tampon every half hour, or washing another pair of underwear, jeans, and sheets that bore the brunt of my latest pad/tampon mishap;
  • To decrease the fistfuls of Advil I have for breakfast, lunch, and dinner when my period arrives;
  • To shorten my 10 day periods to a lovely 5 or 6;
  • To enable me to have sex with my husband without being immediately engulfed in tears from the searing pain of penetration; and,
  • To, you know, remove the fucking abnormal growths that are slowly destroying my body and my quality of life.

So, no kindly nurse, I do NOT understand that this procedure is only being done to improve fertility.  In my mind, it’s being done to make my life worth living.  Thanks for advocating for the health and happiness of your patients, by the way.  It’s not like those of us with endo are facing a very difficult climb to get respect from insurers, employers, and society at large.

At least this time around I know up front that my surgery will be covered by my insurance.  Last time I was living in a state with no statewide insurance mandate for the coverage of infertility diagnosis and treatment, so, as I mentally and physically prepared for the impact the surgery would have on me, I also had to financially prepare for the impact it might have on my pocketbook.  In a state without insurance mandates, my “elective” exploratory laparoscopy in 2012 was, as the insurance call center rep informed me, “on equal medical footing with a breast augmentation.”  And, she continued, “We don’t cover breast augmentations!”  It was an odd experience to wake up ecstatic to hear that abnormal cells were growing on my ovaries, tubes, and pelvic wall, and had fused my bowel to my abdomen.  I was thrilled to be ill because it meant the surgery would be paid for by my insurance, not by depleting our savings.  So, things could surely be worse with this second at-bat at this having a hole cut in my stomach thing.

I thought electives were, you know, supposed to be elective?  Something you chose, something optional, something to be assessed, debated, and voted on.  How, then, is my infertility elective?  At what point did I chose to be infertile?  When did I decide to allow endometrial tissue flourish outside of my uterus?  And, if this is something I “turned on,” how the fuck do I turn it off?

Pass the wine and tampons

Do I really need to write a post? That about sums it all up, really…

Mr. But IF’s aunt and uncle visited this weekend. We hit the local brew pub, wandered the famers’ market, did a brewery tour, saw an amazing national music act in a tiny rural theater, and ate a lot of great food. Simply put, I actually started to forget the hell of last week. I started to embrace living life again. I started to appreciate a world where not everything revolved around my cycles and my injection schedule.

Then, yesterday, my period came. And, like last month, it came with a vengeance. Bleeding heavier than any of my miscarriages, cramping reminiscent of my worst adolescent cycles, nausea, vomiting, and constipation that serves as an ever-present reminder of the endometriosis wracking havoc on my internal organs. Not even the most remote possibility that the prior days’ bliss would remain undisturbed. It’s one thing to go through the mental process of grieving another failed cycle, mourning the fact that natural conception has passed us by, preparing ourselves for the surgeries and IVFs ahead. It’s entirely another to weather the physical reminders. Almost 4 years later, the physical reminders still catch me by surprise.

But, not all surprises have to be painful. Some can be truly overwhelming, humbling, and positive. I got one of those last week, too. A gift card, a novelty mug, and a giant virtual hug from my ladies in the computer. Thank God for the Internet.

Tomorrow is my pre-op. It will surely be underwhelming. I’ve walked in these shoes enough times before that I know it’s not worth getting excited about this important-sounding appointment. They’ll review my current medications, they’ll ask for my history with anesthesia, they’ll take some blood, and I’ll drive home wondering why the bulk of that couldn’t have just been done over the phone like it was for my last lap two states away. But, it does mean that I’ll be one step closer to my lap, one step closer to recovery, one step closer to IVF. And, one step closer to being done no matter the outcome.

Total fucking breakdowns have their perks

So a (not so) funny thing happened at this morning’s monitoring appointment.  But, since I’ve largely been AWOL lately, let me back up.

We’re in the midst of a Gonal-F injectables IUI cycle.  This, of course, comes on the heels of our most recent failed Gonal-F timed intercourse cycle.  And, in the midst of our decision that we’re finishing out the year with treatments — IUI and then one IVF — and then we’re calling it quits for good with the whole TTC ballgame.  So, to say the pressure is on a little is a bit of an understatement.  After responding decently on low doses of Gonal last cycle (2 follies created in response to 7 days of 75IU and 4 days of 112.5IU), this cycle has been a total mindfuck.  I’ve done 5 days of 75IU and 5 days of 150IU and still have no lead follie(s).  My estrogen is going up and down like a yo-yo and my LH is being predictably unpredictable.

Just to make life more exciting, it seems I’ve suddenly developed strong side effects to either one or both of my current meds (Gonal and Lupron) that I didn’t really have last time around.  Last cycle I had a bit of a headache, this cycle I want to carve my brain out with a mellon baller just to get the pain in my head to quiet for a moment.  Last cycle I felt a wee bit emotional, this cycle I literally go from calm to catastrophe in a matter of seconds.  On Friday, I had what I presume to be my first ever panic attack.  I couldn’t get the lid off of my sharps container, I threw it across the room, and started crying and convulsing uncontrollably.  As I felt my mind leave my body and began to watch myself from outside the hysteria, Mr. But IF dutifully packed me into the car as we started our long drive down to the in-laws for the holiday weekend.  Slowly, everything went numb.  I couldn’t feel my lips, it felt like a million tiny needles were ballet dancing across my skin, I couldn’t catch my breath no matter the effort I put into breathing, and the tears kept flowing.  It was terrifying.  Totally fucking debilitating.  And, the entire time, I was powerless to stop it or to stop the growing panic setting in for dear Mr. But IF.  A little over an hour into our drive I caught my breath, found a teensy bit of mental clarity, and Mr. But IF bought me ice cream.  And, like that, it was over.  But I’ve been clinging to the edge of a cliff ever since.  Not ever the best place to be, but even worse when you have no idea what you’ll find at the bottom.

And, in a nutshell, this was the baggage I brought to my monitoring appointment this morning.  So, when my least favorite NP walked in I braced myself and suppressed the inner grimace that was fighting to come to the fore.  As she went about aggressively probing around in an attempt to find my right ovary, the grimace surfaced.  I’ve had hundreds of trans-vaginal ultrasounds over the years, but never once have I felt as much pain as I felt today.  She pushed, she pulled, she twisted, she angled… she even took the wand out and tried to find it abdominally.  Nothing doing.  So, at the end of it all when I was informed I had two 11mm follies (barely worth measuring) on the left and a completely missing right ovary to show for 10 dutiful days of injecting myself with psychosis-inducing crap, I lost it.  And, by that I mean I totally fucking went bat-shit crazy.

As I’ve explained before, I have issues with my clinic.  Actually, I’ve had issues with both of my clinics.  My first RE – a one-man-show sort of practice – redefines the word arrogance and had an office staff that was so totally inept that they ultimately caused me to leave the clinic in a blaze of curse-laden voicemail messages, canceling my first planned IVF and accepting a job 2 states away in the process.  As awful as that sounds, I’ve been finding myself missing that very same clinic as I’ve endured the trials and tribulations of my new mega-practice.  I had come to view my old RE as your local neighborhood Hallmark franchise.  Yea, they are over-priced, but you keep going back for the nostalgia (I always got a Hallmark Christmas ornament growing up) and the desire to support the familiar group of little old ladies that work there.  The new practice?  It’s Wal-Mart.  Equal measure “Always low prices,” “Why can I never find someone to help me?,” and “I totally know I’m going to leave here wishing I’d gone somewhere else.”

As I commenced the world’s finest showing of shit flipping this morning, I let all my frustrations out.  What started with a simple, “So when do we actually cancel this pointless cycle?  I’m sick of wasting my time and my meds on this train wreck!” became (a likely much less coherent version of) the following:

I’m totally done with your practice and the revolving door of NPs I’m constantly subjected to.  I’m sick of none of you knowing shit about me, ever explaining a damn thing to me, and constantly asking inane questions and offering demoralizing, uninformed, trite advice.  I’m convinced that none of you have ever once looked at my chart and, as long as I keep paying, you’ll keep running me through this conveyor belt until I loose my mind, give up, or die.  And, I don’t even think you care which one of those comes first.

Did I mention I threw a tantrum?  Cause, yea, I did.  And, lest you think that my assertive, often emotional blog voice is the same as my often reserved but skeptical and analytical feet-in-the-stirrups voice, I should probably say I never act like this with my doctors.  I often don’t trust them, but I do acknowledge how totally dependent on them I am for my care and treat them with a level of professionalism and calmness that, quite frankly, they don’t often deserve.  All this is a very long way of saying that what transpired this morning was abnormal.  Really, really out of character.

As my rant continued my formerly least favorite NP transformed before my eyes.  This woman I’ve quietly hated for months due to her rushed and nonchalant approach to my situation, suddenly changed.  I swear her face softened, her voice lost its usual sharp edge, and she physically relaxed as she stopped her mad rush to get out the door and onto probing number 20 of the day.  She turned back around and sat on the stool to talk to me.  And, even more importantly, she started to listen to me.

Through the tears I recalled my history for what felt like the hundredth time.  But this time, she started to hear it.  She opened my chart and started going through it – commenting on what tests I’d done there, what tests I’d done with my old doctor and asking questions about prior diagnostic procedures and the paths that led me to all my diagnoses.  Somewhere along the line I told her that both my emotional stability and my fears of a resurgence of my mild endo were playing into our decision to be done come 2014.  I explained what I’d been thinking but barely able to express even to my husband in the past months.  Namely, that my hallmark endometriosis symptoms (chronic constipation, pain, heavy bleeding, intense menstrual cramps, etc.) appear to be coming back and that has me terrified.  I told her what I remembered from my post-op report with my old RE, the one who had excised my endo in February of 2012, and explained that surely the records the old clinic had sent to them contained more detail than my recovery-room, drug-addled mind could ever recall.  She went into my historical records, found the post-op report, and started to read.  Despite the gigantic three-ring binder I maintain that comprises the whole of my medical history for the past 4 years, I’d never seen the surgical report.  I wasn’t remotely prepared for what came next.

She read it aloud.  I recall phrases like, “right fibria obliterated,” “right ovary encapsulated in adhesions with evidence of torsion,” “cul-de-sac decimated,” “extensive scarring,” “retroverted uterus,” and “bowel affixed to left pelvic side wall.”  I wish I had requested a copy of the report, but I was in the midst of having my world turned upside down.  I still don’t feel like I know which way is up.  You see, my old RE, the same RE I’d been sorely missing these past many months, had simply told me my endo was “quite mild” and posed no cause for concern moving forward.  Following my lap we happily did two clomid cycles (1 BFN and 1 chemical) and it was only our declining patience and his refusal to do injects without IVF that actually prompted us to move down the IVF path this time last year.  He didn’t recommend IVF, he basically said Clomid may work, but if we cared more about getting pregnant quicker than getting pregnant cheaper then IVF would be a good option.  After all, my endo was “so mild,” my tubes “completely clear,” and my prognosis “nothing but positive,” that there was no medical cause for concern.

The report I had read to me this morning – a full 17 months after the surgery that generated it – doesn’t even exist in the same universe as those unfounded, optimistic platitudes I had lobed at me back then.  The NPs jaw started to drop as she formed the words to read them aloud.  When she was done she turned to me and said, “Honey, your entire right tube and ovary are completely shot.  I’m not surprised I couldn’t find your ovary this morning.  I’m afraid your adhesions are back.”  She continued with, “Knowing this, your pregnancy in December was so unlikely.  You must have ovulated on the left and had one stubborn embryo.”  And, finally, she said, “I’m so very, very sorry.  You are right.  Someone should have caught this; someone should have read this before now.  Had we seen this we never would have pursued the treatments we’ve been pursuing.  You need another lap.  And you need IVF.”

In an odd way, it all was kind of comforting.  This is a dance I’ve become so familiar with over the years.  I report my concerns to my doctors, they dismiss me with the lowest common denominator answer, I do my best dutiful patient act and follow their orders, I become increasingly miserable, I reach my breaking point (physically, mentally, or both), I push the issue, and I finally start getting answers.  This is my Hashi’s diagnosis all over again.  Hell, this is the path that led to my initial lap all over again.  In late 2011 I terminated a suspected ectopic, in early 2012 we were blindsided by the news that both of my tubes were blocked.  At my consult after that failed HSG the doctor suggested that it was likely a “false positive” initiated by cramping or “casual debris” and merely suggested another HSG (this time under sedation).  I went home and pondered my options, discovered my aunt had endo (thanks for telling me earlier!), went back to the office, demanded a lap, and found I indeed had (supposedly mild) endo.  Present problem, languish with problem, be ignored, reach breaking point, demand more than simplest answer, find validation in being right, and welcome in new anger and disgust at the fact that you’ve been left languishing for so long.  Rinse.  Repeat.  It’s odd when joy becomes a prevailing emotion in response to repeated discoveries that yet another part of you is broken.

Mr. But IF is furious and quite possibly planning a murderous rampage down to our former home state to “chat” with our former  RE.  It will likely involve a baseball bat, or hammer, or maybe one of my bruiser cousins.  (And, to any law enforcement types reading this, please consult the definition for hyperbole.)  I, on the other hand, feel more hope than I have in a long time.  I’m angry, but I’m angry and armed with answers.  And those answers are more empowering than even Mr. But IF can fully appreciate.  Today someone gave me a window into my fucked up body and acknowledged my pain, confirmed what I thought to be idle worry, and validated our path moving forward.  My anger stems from the fact that, yet again, it was a totally uncharacteristic, unprofessional meltdown of epic proportions that initiated these revelations.  But, as far as the other elements of the story, I’m oddly zen in this moment about it all.  Talk to me in an hour.

So, what’s the plan?  We’ll continue this mindfuck of a doomed IUI cycle because, after the shit these meds have put me through, I’m totally not willing to pull the plug just yet.  I go for another (fifth) follie check Saturday morning.  We’ve scheduled my next laparoscopy for August 20, and we’ll commence our first IVF as soon as I’m recovered from the surgery.  And, with the toll my work has been putting on me lately, I’m almost happy for the lap.  It’ll be a vacation that even my boss can’t talk me out of taking (which has happened to every other vacation day I’ve tried to plan this summer so far).  And, my amazing mother-in-law will come up for the surgery since the hubs will have to work and be unable to drive me to and from.  I really am amazingly blessed in some ways.

The even bigger picture plan moving forward is that I’m going to stop accepting half-assedness (hell, quarter-assedness) on the part of my new clinic.  Every visit I have moving forward will specifically be with my formerly hated, now much respected NP from this morning.  (Apparently, I should have magically known all along that I could “simply” request an NP by name each time I appeared at reception if I wanted to have the same one every time!)  I also have been assured that the doc is always at my disposal whenever/however I need him, and that if anyone ever gives me a hard time or doesn’t treat me with the patience I need and deserve I’m to report it to my new BFF NP.  Fences aren’t totally mended (I mean they did totally fucking practice medical negligence for the past 8 months!), but for once I actually feel like we are moving in a positive direction.  You have no idea how good it felt to hear the NP say to me, “We dropped the ball.  I’m so very sorry for this and you have every right to be furious.  I know it makes none of this feel any better, but I think sometimes we detach ourselves from all that is going on with our patients as a coping mechanism.  I know I do.  It’s hard to remember sometimes when you are doing 20 or 30 or 50 monitoring appointments in a given day, that this appointment is your only appointment and you need us to be there for you 100%.”  The latter part of that paraphrasing does go a long way toward making the “we fucked up” part of the statement a lot more palatable.

Or, maybe the Gonal’s made me soft?  I mean, it’s certainly been adding fluff to my mid-section, so why not my heart as well?

Riding in cars with infertiles (pt. 2)

On Friday I mentioned that two discussions occupied our time on the car trip down to the in-laws. First, a calm conversation about our current feelings on adoption. That one I’ve already reviewed. The bigger land-mine was when conversation changed (as it so often does) to a discussion of our sex life. If you know me and Mr. But IF in real life, this is your warning that you may not be able to look us in the eyes after this one. I give you full permission to look away.

First, as a bit of a preface, this is going to be a hard post to write. But, one of the many things infertility has taught me is that, in almost all cases, the things you find hardest to discuss are often those things that must be discussed. Sex is one of those things. Deep breath…

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

Once upon a time a precocious college lad met an inquisitive young lass. A few walks home from class, a hilariously failed phone call (remind me to tell you about that one some time!), and, ultimately, a first date.  A date that turned into an all night conversation at a doughnut shop. That turned into an all morning snog-fest in the dorm room. That turned into a let’s skip class and stay in bed all day. I hear Mr. But IF now, shouting into the screen, “We didn’t go all the way that first night!”, and that’s true my dear readers. I think we waited, er, 48 hours?

I was a late-ish bloomer – at 18 Mr. But IF was only my third kiss – but it was opportunity not motivation that had held this overachiever back. Worlds of experience separated me from my man, and I wanted to make up for lost time!  And make up we did.

Three years of daring college escapades, uncomfortable public over-sharing, and (barely) evading roommates later, the man I thought I’d learn a little from became the man I wanted to spend my life learning alongside. We started dating at 18 and 21, were engaged at 20 and 23, and married at 22 and 25. I never saw any of that coming, but, looking back, the results have been better than I could have dreamed. Since we largely grew into adulthood together, we’ve grown together through all those changes as well. I never expected to be married so young, but I’m happy.  Well and truly happy.

Yet, somewhere in the months before our wedding something changed. We went from a couple that thrived on brassy exploits in physical intimacy, to a couple in which one partner (myself) lost all desire.  I blamed grad school stress, I blamed the difficult process of learning to live with someone, I blamed my increasing weight and the seemingly unending process of grieving my mom, I blamed the wedding.  Despite years of really good sex, I hatched a plan that now makes me look back and shudder.  “You know what would make the wedding night special,” I coyly queried.  “How ’bout we totally abstain until then?”  I watched my future husband turn a shocking shade of bright white, and, bless the man, he consented.  If I’m totally honest with myself, I, on the other hand, felt deeply relieved.  I was tired of sex, and, though I couldn’t quite put a finger on it then and there, I now know why.  I wasn’t crazy, getting older, or under stress (all things suggested to me by the medical community).  I was in pain, physical and emotional.  And, unfortunately, the worst had yet to come.

During our early years together I was on the birth control pill.  In fact, I was on it before I needed to be on it for the usual reasons.  It was prescribed to me to calm the extreme pain I had during my menstrual cycles (you know, that sign that I was just an overly sensitive weak woman) and I was given birth control as a curative to my ever absent cycles.  While to many women (and men) it may sound awesome to only cycle once every year, it’s less awesome when your period crashes the party that one day you wore white pants in the past 10 months.  And, it’s absolutely less awesome once you do, indeed, become sexually active. There’s nothing like taking a pregnancy test every day for 10 months while you wait for your cycle to return and endlessly Google “false pregnancy test, but still pregnant?”

Then, coincidental to our becoming engaged, moving, and planning our wedding, I was taken off of birth control by a horrid former doctor.  She didn’t like that my blood pressure was “a little high” the one time the nurse took it.  To this day it still stuns me that all medical practitioners think it is totally sensible to assess your BP first thing after the marathon-running “I don’t have time for this” nurse chases you back into the exam room and asks you to strip from the waist down.  I personally think all pills for Viagra should be revoked if there’s even the mildest elevation in a man’s blood pressure as the glove is slapped on for his prostate exam.  So, anyway, despite no history of elevated blood pressure, I was off the birth control.  My cycles disappeared, and, on the rare occasions that they did reappear, I missed several days of classes vomiting and writhing in pain on the floor of my apartment.  From February to November of 2004 I had no period, I saw my first (of now hundreds of) negative pregnancy tests, and I went to the doctor at our student health center.  One more pregnancy test and he simply said, “You likely have PCOS.  You’ll probably be infertile, but otherwise you are fine.  Here’s a prescription for a drug to jump-start your cycle.  Need some condoms?”

So, by the eve of our wedding I was fat, possibly infertile, stressed, and in pain.  And I could never wear white pants.  Oh, and one other lovely realization.  Sex hurt.  Sex hurt badly.  It felt like my entire body was a walking, talking, aching muscle.  Tell me that’s not a turn on?  But, young, embarrassed, and ashamed I held it back from my future husband.  It was, after-all, just the stress, just the worry, just getting older.  It would be fine once we were married.

A month before our wedding I went to a new doctor to get a new prescription for birth control.  She gladly consented and was actually a little taken aback when I told her why I’d been taken off of it in the first place.  To be on the safe side I was prescribed a low-dose option, but I never again had a single questionable blood pressure reading (until, that is, it started bottoming out during the hey day of my undiagnosed Hashi’s).  Fast forward to holy-moly-sex-is-awesome!  See, it was the stress after-all!  But, why am I so constipated?

I finished my graduate degree, I got a “real” job, and along with the job came a “real” doctor.  We discussed my past, I complained of some issues (severe chronic constipation, emotional ups and downs, easy bruising), so she decided to change my birth control.  Bad move, doc.  Bring on the emotionally abusive, desire-less, wife from hell.  But, laying it out like that, it makes it seem so obvious.  Change in pill leads to change in health and happiness so just stop taking the pill, right?  But, we didn’t know it was the pill.  I mean, hell, it’s the birth control pill.  It’s the pharmaceutical equivalent of a tic-tac.  Pop one a day and all worries away, right?  Surely it wasn’t the pill.  It was depression, it was IBS, it was stress, it was poor diet… it was anything but the pill.  I had X-rays, I had blood work,  I went to counseling, I was referred for a colonoscopy three times (but thank God their scheduler always managed to forget to call me back).  I accepted that this was my life now and there was nothing to be done about it.

Then, in 2010, we decided to start a family.  I dumped the birth control and, at least in the beginning, it was wonderful.  Pain-free sex, desire (now fueled by the “holy crap we’re making a baby” phenomenon!), emotional stability.  Then, that first crippling period.  Then, 50, 60, 70 days without another.  Then the return of the pain.  I sucked it up and rolled with the pain of sex.  I can’t count the number of pep talks I had with myself in those early days.  “You want children, you need to have sex, your husband doesn’t deserve to see you in pain.  Smile, moan, say how much you want it!”  Months rolled by, I had no periods, and I certainly had no positive pregnancy tests.  Visit #1 to the PCP was the, “Give it time, you’re young” visit.  Visit #2 was the “For some people it takes time to regulate after birth control” visit.  Visit #3 was a pep talk from my OB and a reminder to keep taking prenatals (which I’d been taking already for 9 months).  Visit #4 I was referred for a colonoscopy (which I again didn’t have).  Visit #5 I was told my acne could be corrected after we were done having our family since most treatments weren’t pregnancy safe.  Visit #6 I’ve recounted already.  As the diagnoses rolled in I still had pain but I thought I had all my answers.  Hashi’s and PCOS were the be-all, end-all of my health and happiness problems over the past few years.  What couldn’t be explained away by that evil duo were most certainly the result of infertility-induced depression and self-loathing.

But, they weren’t.  On November 18, 2011, we terminated our first pregnancy that my OB coolly told us was “almost certainly” in my tube.  In January 2012 my first RE gave us the news that both my tubes were, in fact, blocked.  And, in February 2012 I had an exploratory laparoscopy that uncovered Stage II endometriosis of the ovaries, tubes, and bowel.  The day I woke up from surgery was the day I realized what life was supposed to be like all these years.  Even while still in pain from incisions and CO2, I felt better than I had in years.  Bowel movements weren’t a painful occurrence that happened once a week, they were a morning celebration of my new found health.  (Turns out having your bowel adhered to your abdominal wall kinda messes with you.)  My periods were a walk in the park.  I mean, seriously, I could take a walk in the park while on my period.  I could LEAVE MY HOUSE while on my period without fear of public vomiting and physical breakdown.  Oh, and sex.  It was AWESOME.

For a while.  It’s now been just over a year since my surgery, and I fear the pain is returning.  Endo is a stubborn little bitch.  She’s always lingering there, just under the surface, waiting to pounce the next time your body goes through the normal hormonal changes associated with a complete menstrual cycle.  Multiply this times 100 when (most) fertility medications are used.  In 13 months I’ve had 3 cycles off of birth control and 1 pregnancy that lasted until 9 weeks.  Yet, here I sit, back on birth control for fear endo is coming back to get me.  But, again, that makes it sound so simple.  Don’t forget the nagging head games.  Is that constant bowel pressure endo, or should I not have had that piece of cake last night?  Was that 1 painful session of intercourse from endo, or just a bad position?  Is my drive gone because of fear of pain, or because WTF my body just killed my third baby?

So that brings us to Friday and Mr. But IF’s (very poorly timed), “When do you think we’ll ever have sex again?”  “I don’t know!” I screamed.  “It hurts so bad!” I admitted.  “It’s not that simple!” I implored.  Whether I like it or not, our sexual encounters are now intimately connected to my fears of my future (failing) health and memories of my past failures to both achieve and maintain a pregnancy.  This, in turn, leads to a frustrated partner, at best, and a man that feels reduced to a sperm donor, at worst, since the only time I apparently am able to get “in the mood” is when I know I have to for the sake of making a baby.  Add to this some long gone memories of my past precociousness, inflammatory statements on both sides, a bucketful of tears, and an unhealthy bantering about of differing connotations of the words “selfish,” “pig,” “ignorant,” “bitter,” and “asshole,” and it makes for a truly thrilling drive down the highway at 70mph.

I wish I could say that we solved our problems on that drive, but these problems aren’t solve-able.  The best I can promise is to remain open about what I’m feeling, and the most I can rightfully hope for in return is understanding.  And, it goes both ways.  I know I often make myself out as the martyr.  hurt, miscarry, get ignored by doctors.  In the heat of the moment I ridicule Mr. But IF for having the nerve to discuss his sexual wants while I’m wondering when/if the time will come when my endo gets so bad I’ll need a bowel resection, or how much that brand of birth control that leaves me with some drive will effect my thyroid levels, or whether or not the sex will “count” given my expected date of ovulation.  It’s easy to minimize the importance of physical intimacy in a marriage when one partner is constantly waiting for the other shoe to drop.  And, in that process, make out one partner’s needs as optional upgrades.  Intimacy in marriage shouldn’t be an upgrade, though, it should be a foundation.  One of many foundations, yes, but a foundation all the same.

Truth of the matter is, as this heart-breakingly accurate post from the blog “My Free Mind” details, not all battles with infertility have happy endings.  And, that’s one of the shittiest aspects of infertility — you just don’t know where you will stand when the smoke finally clears.  I do not know whether I will ever be a mother, but I do know I’m capable of being a wonderful partner.  I’ve been madly in love with my husband since that afternoon standing under the trees outside my dorm room discussing barbers, pocket watches, and history class. Our marriage will not become a casualty of endometriosis, inept doctors, and infertility.

What is in a name?

As I sit here this cold Monday morning, Lady Grey tea in hand, kitties at my feet, waiting for the fireplace guys to come clean the pellet stove insert in our new home, I’m doing some reminiscing.

First realization (and if you’d known me a few years a go, this would be an utter shock), life is good.  No, really, it is.  I’m married to a man I adore, and who challenges, entertains, inspires, and, yes, infuriates me every day.  In 8 years I’ve earned two advanced degrees, numerous awards, been published in a premier journal, and, just this summer, had all this hard work pay off and lead to a new wonderful position in a new town, where we bought our new (old) house, and are making our new friends.  For whatever reason, I have earned loving and loyal friends throughout all stages of my life, and I married into a large family that, while very different from my own, loved me instantly and completely.  And, yes, there is the whole “kitties & tea” thing – that certainly never hurts.

Prior to early 2011 the realities of my life on paper were much the same, but life was most definitely not good.  I hurt.  Emotionally, physically, wholly.  Years of doctors appointments – high school physicals, college health center, grad school health center, new “big girl job” PCP – had left me with the belief that the only things wrong with me were those things I was doing to myself.  As the weight piled on, I was, at best, given referrals to therapists, and, at worst, accused of sleep eating.  Now, I was never thin.  Even while dabbling with an eating disorder in late high school and early college, I still never lost.  (Probably one of the reasons I “dabbled” rather than falling completely into that hell like so many women and men before me.)  But, years of silent calorie counting and exercise kept telling me one story, while the scale told me another.  By my mid-twenties I was gaining 20-30 pounds a year with a strict diet and exercise regime.

But, said the docs, you are depressed!  I knew I was depressed, I had no doubt I was depressed, and I’d most definitely been depressed since middle school.  And, thinking about how I still managed to be depressed even when everything in my life was going so good, just made me more depressed.  When my body started aching, my mind started failing me, my chronic constipation took over my life, and my desire for sleep reached a level that only an addict jonesing for his/her next fix could appreciate, I marched my fat self back to the doctor.  Apparently, the sleep was from depression, the body aches and back pain were from my tubby self sleeping too much, the constipation could be IBS or not enough water or my obviously bad diet, and the mind was me just needing to accept I was getting older… at 25.

Then, I went off birth control.  The same birth control I had gone on at age 18 because I was sick and tired of wondering when my next period would come, and when I would next need to miss a week of school writhing in pain and vomiting on the floor as my mom encouraged me to sip warm port wine.  My first visit with Aunt Flo (or AF as the cutesy types in the online IF world call it) was when I was 11.  From 11 to 18 my cycles ranged from 30 days to 10 months between periods.  My mom trotted me into the doctor, was told I was “young” and just needed time to regulate, and brought me home defeated.  When we mentioned the extreme and crippling pain I would have whenever menses did arrive, I was told to get used to the joys of being a woman.  When one older male physician told my mom that, “If your daughter’s cramps are as bad as you say they are, then I would think you’d be happy she cycles very irregularly,” I thought she was going to choke him out right there in the exam room.  So, at 18 I learned to stop worrying and love the pill.

Trouble is, you can’t really love the pill when you want a baby.  When I quit it in 2010 to begin building our family, I was not remotely surprised when I didn’t have another period for 48 days, then 43 days, 62 days, 58 days… I was 8 months into trying for a baby, and had had 4 periods.  More problematically, my friend the basal body temperature chart told me I wasn’t even ovulating.  Back to the doctor, more recommendations to lose weight, eat right, and wait for my body to regulate.  So we waited.

We waited until one morning in February 2011 when I woke up for work, looked at my husband, didn’t know who he was or what is name was, and started to panic.  When Mr. But IF had sufficiently calmed me down, he wisely brought me a telephone to call out of work for the day.  Trouble is, as he handed me that rounded chunk of plastic, I had no clue what to do with it.  “Phone” seemed familiar, the feel of the object in my hand seemed familiar, and even the thought that this was the item one used to order pizza, connect with relatives, and snag a work-free day seemed familiar, but how to actually accomplish those things with a brick named V-tech?  Nothing doing.  Mr. But IF had me to the doctor same day.  She asked me what I thought was wrong, and I told her what I’d told her several times before.  Please check my thyroid.  I begged, tears came, and she ran the tests.

I dragged myself into work the next day, and spent the day forwarding my phone to every new office or workspace I found myself in.  (I’m convinced, by the way, that Google Voice is one of the most essential tools in my battle with the health care system.)  When the phone call came I was wonderfully alone in an office with my husband.  Our conversation went something like this,

Nurse: The doctor wants to schedule a follow-up.

Me: Ok, great, when?

Nurse: Um, now!  Today.

Me: What were my lab results?

Nurse: Um, well. <Sounds of shuffling paper> There are quite a few…

Me: TSH, all I care about is the TSH!

Her: Oh, ok.  55.38.

Me: <Tears.  Tears.  More tears.  Tears of joy at being right.  Tears of anger for being ignored for so long.  Tears of pain for all my hurts.>

For those that don’t know much about thyroid disease, you’ll likely hear a lot if you stick around here.  Suffice it to say that the normal range now recommended by the American Association of Clinical Endocrinologists is 0.3 to 3.0.  On February 8, 2011, mine was 55.38.  I wasn’t fat; I wasn’t depressed; I wasn’t a complainer.  I was sick.  Very sick.

It took another year and a miscarriage to diagnose both the PCOS that was contributing to my absent menses and the Endometriosis that was making them so unbearable.  But, in that year I benefited from the number 1 lesson I’d learned through Hashi’s.  NO ONE WILL CARE ABOUT MY HEALTH UNLESS I MAKE THEM.

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

So, 1,200 words in and I guess I’m finally to the point of this post.  (I’ve mentioned I struggle with brevity, right?)  Why have I named this little corner of the Web “Not When, But IF?”

The first meaning is pretty transparent I suppose.  Infertility (IF) brings with it a loss of predictability in one’s life.  Go to any infertility support group, visit any online support forum, or talk to your friendly neighborhood infertile (you know, that friend of your mom’s cousin), and loss of control is a theme you will hear about regularly.  We don’t know when, how, or even if we will be able to build our families, and it is because of IF.

Though it isn’t a theme I’ve yet to detail here, I should mention that at every doctor’s appointment during which I brought up my absent menses and ovulation and subsequent fears of future or current infertility, I was reminded that I was young, that these things take time, and that it would happen “when the time is right.”  Not if, but when, the cheery nurses would say.  But, for 1 in 8 couples, however, that couldn’t be further from the truth.

There is also a deeper, more personal meaning to “Not When, But IF.”  I often say to my support group that I have a complicated relationship with hope.  I’m still trying to decide whether I say that because it is nice and quippy and makes me sound smart, or if it actually gets to the root of something deeper.  It’s probably a bit of both.  For better or for worse, my complicated relationship with hope has a lot to do with the fact that I loathe it as a concept for its utter laziness.  When someone tells you to hope (chipper obnoxious nurses, my well-meaning Aunt, the stranger on the chat board), it feels accusatory, dismissive, and uninformed all at once.  Had I hoped more, would my body not have killed my last baby?  How could hope have detached the endometriosis adhesions connecting my bowel to my abdomen?  I hoped so damn much that my doctors would take me seriously and test my thyroid, but that hope wasn’t fulfilled until I demanded action.

Thus, the other meaning of “Not When, But IF.”  While I pray not everyone will have the difficult path to diagnosis that I’ve had, many unfortunately will.  And to those women I say don’t wait for an eventual moment when your doctor will take you seriously.  Change will come if you educate yourself, seek out your own answers, get second, third, fourth opinions, and demand that the time for attention is not some when in the future but now.

And, lest I sound nauseatingly Type A, self-righteous, and put together, let me add that doing the above can still be absolutely overwhelming and terrifying to me.  On Friday, I learned that I’m likely in for yet another battle in this long war toward health.  Routine labs run by my endocrinologist last week now reveal a highly elevated ANA titre (1:1250 speckled pattern) that could indicate an additional autoimmune disease (Lupus, Sjogren’s, Scleroderma, and mixed connective tissue disease being the most likely culprits), could be the lingering effects of my immune system killing my last baby, or could be absolutely nothing at all.  But, until I find out, I’m stuck sitting here, wondering when and if I’ll ever get my answers.

Birthing a blog…

… and nothing else.

***********

We all have our elevator stories.  We boil our lives down into quick couple-liners.  Me?  I’m a wife, I’m an archivist, I’m an academic.  I enjoy beer, football, technology, and history.  I code and I cross stitch.  I’m a displaced Pittsburgher, and a proud Pennsylvanian.

If that elevator got stuck, you might hear a little more.  I lost my mom to cancer far too young; I spent my teens over-achieving, while doubting my appearance, my sanity, and my self-worth; I married my best friend at 22; and, I’ve always wanted to be a mother.

I’m also infertile.

***********

At 26, my husband and I celebrated our fourth wedding anniversary, we marked 1 year in our lovely little Cape Cod home, and I had a fulfilling and challenging job.  I did it all “right,” had all my ducks in a row, and it was time for a baby.

Now, at 29 (soon 30), my arms remain empty.

***********

I often quip that I wanted a baby, but all I got were these lousy diseases.  Hashimoto’s thyroiditis, Polycystic Ovarian Syndrome (PCOS), Endometriosis, Raynaud’s, and (the world’s best named genetic mutation) MTHFR A1298C.

In three years, we’ve also had three miscarriages.  I’ve hosted a large family Thanksgiving the same week I walked into maternity triage to terminate an ectopic pregnancy, I’ve driven 12 hours in one day for a 1 hour consult with one of the world’s only Reproductive Immunologists as my third pregnancy failed, and I can compete like a pro in the infertility pain olympics.

But, I don’t want to compete in the pain olympics, and I strive to wear my infertility like a badge of honor, not shame.  These three years have brought me friendships I could never have predicted with strangers across the globe.  Women with whom I’ve cried and celebrated, and for whom I’m daily thankful.

My infertility has made me strong.  I founded a RESOLVE (The National Infertility Association) support group, I’ve raised money for infertility awareness, I’ve walked in the Walk of Hope, and I’ve written Congressmen.  From a book-smart yet reserved girl, I’ve transformed into an assertive and proactive woman.  I’ve questioned doctors and lived to tell about it!  (A feat I once thought would never be possible.)

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

So, my elevator speech.  Today even the short one includes my infertility.  It’s one of the largest influences in my life, and I’m not remotely afraid of it defining me to others as it has come to define a large part of me to myself.

I’m not a mother, and I may never be.  But I can raise awareness of infertility, I can try and rear in others a willingness to speak up and fight for themselves, and I can birth this blog.  And, that’s something I’m tremendously proud of.