A life lived in pieces

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

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

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

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

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

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

This is the post

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

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

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

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

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

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

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

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

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

But, I’m also pregnant.

For now.

Good thing I’m not superstituous

So, as I wrote yesterday, we’re boarding the IVF train and leaving Waiting Station.  My baseline is tomorrow.  All aboard!

After calling the clinic to set the appointment, I followed a familiar routine.  I opened my personal Google calendar and added the appointment, opened my work Google calendar, copied the event to it, and padded it with an extra 1.5 hours on both ends for travel.  (Sure, sure, my boss doesn’t need to know that I’m “busy” starting at 6 fucking-AM, but I want her to feel guilty and lazy when she sees that appointment on there!)  As I added the appointment, though, something hit me about the date.  September 18.  There’s something special about September 18…

A childhood friend’s birthday is today, so not the 18th.  My aunt’s is in a few more days, so not her either.  I went through my mental inventory of work obligations – my self-report isn’t due for another few weeks, that conference isn’t until next month, and, honestly, when does anything special happen on a Wednesday?  I asked Mr. But IF, but, nope, no important milestones.  I let it be.

After another exhausting Monday, I settled in last night to watch my Steeler’s get stomped.  And to eat my body-weight in carbs.  Some friends have guilted me into attending a twice weekly faculty bootcamp class on campus.  Can I just say how much I am looking forward to the excuse of stims to start dialing back on these classes?  I also booted up Facebook for a quick stalk and mock.

Many folks in the infertility community have a difficult relationship with Facebook.  While I’ve had my moments, it’s never been that big of a source of pain for me.  Maybe it’s because I’m somewhat used to Facebook showing me things I can’t have – friends celebrating birthdays, engagements, and showers with their mothers – or maybe it is because I started using Facebook as an infertility soapbox and support network early on in the struggle – I freely post IF articles, comments about our treatments, and speak to my IF “friends in the computer” via Facebook every day, but for whatever reason Facebook has never been much of a trigger.  Last night wasn’t really any different, save the fact it reminded my why September 18 felt so important.

Yesterday when I pulled up Facebook I was greeted by another wrinkly and squish-able newborn face.  The daughter-in-law of my mom’s best friend had her son.  My mom’s best friend, my “aunt” by choice not blood, is now a grandmother.  Another happy ending.

When I opened up to my “aunt” about our troubles conceiving, she told me her son and daughter-in-law were having issues as well.  She’d been pregnant, she’d lost the baby, they thought it was her thyroid.  I shook my head knowingly and supportively, offered my sincerest condolences, and told her to tell her daughter-in-law to call me no matter when or why and let her know she was not alone.  “We may be next to strangers,” I said, “but please just let her know there’s someone out there that ‘gets it’ and will be there for her if she needs it.  I would have given anything not to feel so alone in the beginning, and I don’t want to know that anyone else feels that way if I can help it!”

She never reached out, and that’s fine.  She was pregnant a few months later, and so was I.  Seems we were both getting our happy endings.

Her son was born yesterday, and mine was miscarried and flushed at just over 9 weeks this past February.

So, that’s why September 18 had a ring to it, caused a visceral reaction.  September 18 was my due date.

After seeing a gestational sac, hearing a heartbeat, seeing the embryonic squirm, September 18 was supposed to be the end of our infertility struggle and the beginning of life as parents.  Instead, September 18 will be the day we start IVF, the day we begin again from scratch, the day we get one step closer to being done once and for all.  While a beautiful and happy new family celebrates in my old hometown, I’ll answer the alarm that will ring at 5AM, scrape the frost off of my windshield at 6AM, be to my clinic by 7AM, and begin the appointments, the injections, the hoping, and the despair all over again.  As they celebrate each newness – eyes opening, hospital discharge, first night at home, first bath – I’ll endure the endless and familiar cycle.  Remove vial from fridge, swab injection site, pull back plunger, stab, sterile gauze, repeat.  While others move on, I continue going in circles.

Happy birthday little one…

On October 30, 2011, I saw this:

Positive pregnancy tests

I was pregnant.  I was stunned.  I was overjoyed.

The reason that there are so many tests is that I literally couldn’t believe it.  My lovely IF friends in the computer encouraged me (aka pee-pushed me) into taking dozens of tests in the hopes of getting me to accept what was so very clear to their eyes.  I was pregnant.

My disbelief stemmed partly from the sheer newness of a positive test after over a year of negative ones, as well as the unlikely scenario that led to that second pink line.  For that pregnancy cycle, my period started on August 26, I flew to New Orleans for a family vacation/family wedding combo on October 17 (CD53), enjoyed oodles of vacation sex, ovulated on my own on October 19 (CD55), rang in my 28th birthday in a NOLA jazz bar with plenty of libations on October 20 (CD56), returned to plain old life and home on October 24 (CD60), and saw those lovely lines on October 30 (CD66/11dpo).  To say the result was unlikely is an understatement.  And, this was long before knowing all I know now about my endo-riddled organs.  I couldn’t help but laugh (or at least “LOL”) when I wrote to my IF friends in the computer, “I guess all I had to do to get pregnant was take a vacation afterall!  Grumble…”  For once, it seemed, the odds were in my favor.

As I welcomed the constant parade of trick-or-treaters in our family-friendly neighborhood, from the front porch of our first house that we bought to hold our future family, all I could think about was how the following year I’d have a little pumpkin of my own.  So, on Halloween night as I went to the bathroom in the spare quiet moment between fueling hordes of candy-craved princesses and monsters, I was startled to see a bit of pink on the toilet paper as I wiped.  I’d been in the TTC game long enough to know it’s premature to fret over small amounts of blood in the early days of pregnancy, but I was terrified.  I called my OB the following day and, after pleading with the nurse on call, they agreed to draw a beta.  Then there was more blood, more frantic calls to the OB nurse from the broom closet of my former work space, and more betas.  Then the cramping picked up, my fingers started turning blue, and I made a few more calls.  My betas were initially good, but then started acting strangely.  They rose, but not enough.  The OB nurse was nonchalant throughout it all.  When she did bother to return my calls, she’d offer me helpful advice like, “Start getting used to the little pains of pregnancy!” or “Spotting is totally normal at this point” or “We don’t believe in testing progesterone, supplements won’t do anything anyway.”  When, in the fifth week of my pregnancy the cramping escalated and the bleeding continued, I started asking for the nurse to discuss my case with the doctor.  As I entered the sixth week my beta was just shy of 500.  The ever on-again/off-again (and currently off-again) betabase.info lists the median beta for that stage of pregnancy to be 10,936.  Something was wrong, and the odds weren’t in my favor.

After what must have been my 7th or 8th “please help me I’m worried” call to the OB, she agreed to send me for an early ultrasound at a local imaging facility.  I was just around 5 weeks. As Mr. But IF and I sat there anxiously, the tech poked my overfull bladder with the abdominal probe since my ultrasound had been ordered in the same fashion as one would be for a woman much further along in her pregnancy.  Not surprisingly, nothing was visualized abdominally, so we switched up to trans-vag.  It was my second ever trans-vag ultrasound, with the only prior one coming when I forced my GP to send me for testing for PCOS in 2009 in an attempt to help us decide when we should start trying to conceive.  But, that GP sent me for an ultrasound while on birth control (“It doesn’t matter, they can tell either way!”), so visit #1 with Mr. Wandy was a total waste of time.  This would be the first that really mattered.  And, she saw nothing.

At some point between the end of my fifth week and the start of my sixth, the combo of my empty uterus and abnormal betas finally started to concern my OB.  She went from failing to return my calls to scheduling me in for an emergency appointment in the matter of two days.  When we arrived to the busy OB waiting room for my “we’ll squeeze you in” mid-day appointment, we had no clue what the visit might entail.  As incredibly pregnant woman after incredibly pregnant woman went back for their visits, my heart raced, my hands shook, Mr. But IF scowled.  When we were finally taken back over an hour late for our appointment, the nurse got in a fight with me over the name of the brand of prenatals I’d been taking (“I need the name to enter it into your chart!”).  I cried as the pictures of plump and happy babies stared down at me from the exam room walls.  When the doctor entered she matter-of-factly outlined our options.  “It’s an ectopic pregnancy,” she said.  “You’ve got three choices, but there’s really only one I’d recommend.  First, we do a D&C, but that’s probably pointless because I don’t think we’re going to find anything.  Second, you wait and continue to do betas.  I will only do them once a week and I won’t be held responsible if your tube ruptures and you lose it.  I don’t advise this option, but it’s there.  Just go to the hospital with any pain if you choose this route.  Finally, we can send you to maternity triage for a dose of Methotrexate.  This is the only option I’d recommend.”  We asked for a beta the following day, and promised to go to triage if the number hadn’t risen appropriately.  As the doctor walked out the door she said, “Don’t cry.  I’ll see you back here soon enough!”  That was the last time I ever saw that doctor.

On November 18, 2011, I walked into the women’s health wing of our local hospital pregnant.  I left a few hours later with chemotherapy flowing through my veins.  The same drug that is used to kill rapidly growing cancer, was being used to kill my likely wayward embryo.  Two days later, after passing out on our bathroom floor, I was back to maternity triage.  I was bleeding heavily and experiencing my first miscarriage.  As the nurses got an IV started in an attempt to correct my barely perceptible blood pressure, I started having contractions.  After I passed a large sac, it was scooped up and deposited in the nearest biohazard container.  I wish I knew then what I know now.  That passing a sac like that would be highly unlikely with an ectopic.  That I could have requested to have those products tested.  That an empty uterus via an ultrasound done at the 5-week mark couldn’t conclusively prove an ectopic.  That the Methotrexate would curb all trying to conceive attempts for three full months.  That in those months I’d find my tubes were blocked, that I had endometriosis, that I was far more fucked than I ever thought.  That that embryo was my miracle child, forged out of the unlikeliest of scenarios and the last true pregnancy I’d see for a long while.  But, we can’t live our lives through what if’s.

Save for one, that is.  Today I find myself thinking, “What if things had gone differently?  What if that embryo had become fetus had become baby had become my longed-for child?”  Today would be my son or daughter’s first birthday.  Happy birthday little one.

First birthday cupcake

Fatty acids on board

This morning I returned to the RE for my first Intralipid infusion.  It was my first time at the RE since I triggered ovulation, and my first experience with Intralipids (ILs).  Despite a morning of firsts, it was a pretty boring event.

IV drip stand and bag with intralipids

My vein milkshake

I’ve been aware of ILs for a while now, but up to now have always had doctors who strongly poo-pooed both ILs and the entire world of immunological infertility and miscarriage.  Back in my young, naive, spry days I remember asking RE#1 about immune implantation failure and ILs or IVIG and his immediate response was, “Get off the Internet!”  My inner self replied, “As soon as you get your head out of your ass,” but I smiled, thanked him for his time (why do I do this when all I can think is what a waste of my time such visits are), and went home to bitch to my friends in the computer.  So, though RE#2 is by no means my favorite person in the world and he often makes me miss RE#1, I was happy to discover when pursuing his website before making our move that he did at least do some therapies aimed at the immune system.  Granted, he does no immune testing, his NPs and nurses no less about the therapies than I do, and he blindly moves all repeat loss patients (RPL) to his cookie cutter RPL protocol (Lovenox, Baby Aspirin, ILs) without a thought toward their history or medical background, but even when motives aren’t quite pure, the results can still be positive.  And, I’m feeling positive now that my own Intralipids are on board.

Intralipid is a brand name for a type of fat emulsion.  Basically, the “medicine” is comprised of soybean oil, egg yolk phospholipids, glycerin, and water, and is administered via an IV drip.  The substance was initially created to help nourish adults and infants who are unable to get sufficient nutrients.  At about 2,000 calories per infusion (ack!) that makes perfect sense.

Somewhere along the way, however, it was postulated that ILs could also correct immunologic dysfunction in the uteri (yes, hah, that’s the plural) of women experiencing infertility, repeat miscarriage, or repeat IVF failure with normal-appearing embryos.  As Dr. Braverman explains, “Intralipids have a suppressive action on certain components of the mother’s immune system, essentially safeguarding the embryo from the immune reactions which might otherwise result in a miscarriage.”  As the lucky recipient of two autoimmune diagnoses (Hashi’s and Raynaud’s), the sufferer of three miscarriages (including one 9 week loss of a normal-looking, strong heart beating almost fetus), and the owner of a set of crazy and yet undiagnosed autoimmune lab results, I’ve decided it’s time to throw everything there is at this trying to conceive shit and see what works.  I believe in my heart something immunological is happening to cause my abnormally low progesterone and HCG and to interrupt my pregnancies.  We know my immune system is already fucked by i’s propensity to attack itself, so why is it so strange to think it’s also attacking babies?  I’m loudly shaking my head along to Dr. Sher who writes, “In my opinion, it is very regrettable and unfortunate that so many patients are denied the ability to go from ‘infertility to family’ simply because (for whatever reason) so many reproductive specialists refuse to address the role of immunologic factors in the genesis of intractable reproductive dysfunction.”  Preach it Dr. S!  So even though medical researchers are still spouting the same, “appropriately controlled, large-scale, confirmatory studies are necessary,” hurry up and wait, I had 2,000 calories of egg yolk and soybean oil injected straight into my vein this morning.  Breakfast of champions indeed!

Now, normally ILs would be given a few days prior to ovulation, a few days after, and then again sometime in early pregnancy.  This is what I wanted, this is what we planned, this is the proper way of things.  But, when we mapped out this entire cycle back in March Intralipids were on a nation-wide back-order at every specialty pharmacy currently covered by my insurance.  I frantically messaged my NP through our patient portal, told her I couldn’t get the Intralipids, and asked what to do.  She replied with a simple, “Oh, yea, they’ve been backordered for a while now.  We’ll make do without them.”  I’m glad she was so fucking calm, because I most certainly wasn’t.  Then my high ANA was discovered and I was left hanging in the breeze, unable to try and conceive, stuffed full of birth control pills again, and waiting for the world’s most unhelpful doctor visit to pass me by in mid-May.  When this cycle started we reviewed the meds I had in my possession (those gathered for the March cycle that never happened), I got poked, I got probed, and the rest was history.

At my final follicle check before I triggered I had the “good” NP (and not the “chipper” NP, the “grumpy” NP, or the “clueless” NP I’d had for prior scans that cycle) and she dutifully asked me to review my history and the plan for the cycle.  I explained it all and she asked why we weren’t doing ILs.  I told her I’d tried in March but was told it was hopeless and there were none to be had.  She informed me that they had a new supplier and that I really should be doing them.  I agreed immediately.  She wanted to book me the next day (the day of my trigger) for my first infusion.  And here’s the hiccup.  First, the meds had to somehow be ordered, approved by insurance, paid for, and shipped across two states in under 24 hours.  Doable (I’ve done it with PIO before), but not exactly stress-free.  Second, and the bigger deal, I would need to take an entire morning off work with only a few hours notice.  With an hour drive each way to the doctor, and two hours spent in the chair receiving the drip, that’s at least a 4.5 hour absence.  I have freedom to take time as I need and my boss has been quite supportive, but I just couldn’t do it.  So, I didn’t get my pre-O dose in.  I’m not incredibly concerned about it, but I am annoyed by how it happened.  Between my baseline and my final scan I had 5 appointments with the RE to discuss my protocol, yet only at the last was this question (a question I would have never thought to ask myself) raised.  Once again, my treatment is being dictated by bad timing.  Next thing you know I’ll have the gall to miscarry again on a weekend!

The infusion itself was, I don’t know, what’s the word?  OK?  Fun?  Not terrible?  Oddly relaxing?  Honestly, it was probably my best trip to the RE because 1. no talked to me much, and 2. I didn’t have to take my pants off.  (Yes, the things that make for a very bad night on the town, make for a very good visit to the RE.)  It’s strange the things I worry about in advance of my appointments.  Last night I wasn’t remotely concerned about the infusion itself – the needles, the drip, the visual, the waiting.  What I was concerned about was what they were going to do with me, where they were going to set me, what my surroundings would be like.  I’ve complained before about my ski chalet fertility spa clinic, and this is perhaps a topic I should expand upon a little more in future weeks, but long story short, I hate feeling like I’m being pandered to, like my medical condition is being minimized, like only aggressive femininity is catered to by my fertility boutique.  The Bose speakers blasting tranquil bird and water sounds, the Keurig in the lobby, the overstuffed furnishings and fireplaces, and the spa out back do the exact opposite of relax me; they enrage me.  So, my biggest fear with the Intralipids was that they would set me in some dimly lit cave of tranquility while administering them and that the entire time I’d be getting increasingly annoyed that my fate had come to this.  Me, the gal who hates getting her hair done at a salon, the woman who’d prefer a beer and football to wine and a chick flick, left to fester in a doctor’s office most convincingly camouflaged as a day spa.  Talk about the awful things IF has done to me!

Typing with IV drip

I should definitely get overtime for this!

To my great pleasure, however, I was whisked away to a bright and sterile procedure room, instructed to sit in an exam chair that reclined to a lounge position, given a warm surgical blanket, and asked to review my history and sign several consents.  Once the IV was in I was handed the water bottle and laptop I’d smartly brought from home and more or less left to my own devices for the next 2 hours.  I got a little work done, worked on the questions I’ll be asking when Mr. But IF and I host our village’s weekly trivia night on Wednesday, and before I knew it time was up.  It would have been perfect save dealing with the pulseox monitor they required me to keep on my finger, which greatly inhibited my typing.  (I was hoping to post this from my chair this morning!)

Now we wait.  My first pregnancy blood test is a week from Monday.  Hopefully the milkshake my veins just drank in does some good, and even if it doesn’t my morning alone with my laptop and thoughts certainly did.

What a (little) difference a year makes

A year ago yesterday we went in for what would ultimately be our last consult with RE#1, though we didn’t know it at the time.  I was just barely pregnant (beta of 9.6 at 14dpo) and knew yet another cycle had failed. This would be my forgotten miscarriage, the one I tend to leave out of my medical history and the one whose due date I usually have to look up to remember.  When you’re only chemically pregnant for 48 hours, it’s hard to get those facts indelibly saved to memory.

It was also the day we decided to do IVF for the first time.  A year, a miscarriage, and 9 months of birth control later, we’ve still never come close to doing IVF.  I’m having a little trouble accepting that today.  The solid hour I spent in the MRI tunnel this morning isn’t helping any either.

The thing no one really recognizes about infertility treatments until they are knee deep in them is that treatment protocols are rarely dictated by what’s medically appropriate, what is most likely to achieve pregnancy, or what is least likely to have negative side effects.  First and foremost, infertility treatments are guided by one’s health insurance policy and bank account balance.  In the case of our old insurance this meant a number of things.  First, I could use the oral ovulation medication Clomid every day for ten years and they wouldn’t bat an eye.  Never mind the fact that all it would do was aggravate my endometriosis, that it never caused me to ovulate within a “normal” timeframe, that I always had abysmal progesterone while on it, and that the hot flashes, headaches, and mood swings it caused me made me long for the simplicity of menopause.  As RE#1 said, “It’s definitely not the best treatment for you, but I guess we’ll try it since it’s inexpensive.”  So, try we did.  And, fail we did.  Two of my three miscarriages have been the result of Clomid cycles.

Aside from the fact that our insurance covered Clomid, it was also our longtime go-to option because of this lovely little thing I like to call the “asinine catch-22.”  When doing everything up to and including Clomid with timed intercourse, my insurance covered all consults, ultrasounds, blood work, and surgeries that happened in the course of my infertility workup.  As long as you were only using Clomid and trying to get sperm to meet egg the old fashioned way, you were still considered in the “diagnostic” phase of infertility.  Two years of diagnostics?  No problem!

The moment we skipped to harder drugs (injectable stimulation meds) or moved to assisted reproductive technologies (IUI or IVF) my insurance would automatically assign me the classification of “infertile.”  From that point on, all future consults, medications, ultrasounds, bloodwork, and surgeries would be subject to an infertility rider and not my normal coverage policies.  Essentially, from the moment I took that first injection, I’d pass a point of no return.  For the rest of my lifetime under that policy all non-pregnancy ultrasounds, all RE visits, all blood work, and all surgeries (whether coinciding with fertility treatment or not), would come out of a $10,000 lifetime limit for which I was subject to 25% coinsurance (insurance pays 75% of charge, I pay 25%).  That’s scary enough to think about in the first place, but when you factor endometriosis into the equation and the very real need for future laparoscopies to control the spread of endometriosis, it becomes downright terrifying.  And, once we passed the point of no return there was no coming back.  No returning to simple sex and Clomid, no “hey, just kidding, please let me have another insurance-paid-for lap,” and no routine bloodwork.  So, my insurer, not my doctor, got to tell me what treatments I was allowed to try.

But, when it became obvious Clomid was most certainly not going to be our miracle drug, we had a difficult choice to make.  Injectables stood a good chance of working, but at about $1,500 for just the medication, $100 per ultrasound (and I averaged 5 ultrasounds per cycle on Clomid due to my late ovulation), and several hundred dollars a pop for blood draws, it was a pretty expensive game of “hope this works.”  Given my PCOS, RE#1 was also fairly concerned I would overrespond on the injectable stimulation drugs and produce too many eggy targets for Mr. But IF’s boys.  This would mean canceling the cycle.  Canceling after paying for the meds, after paying for the ultrasounds, after all the blood work.  The only other alternative would be moving forward despite the over-response and seriously risking a high-order multiple pregnancy.  The thing with injectable stimulation medications is you really don’t know how you will respond until after you’ve tried them.  Injectables with timed intercourse was a pretty expensive gamble with the real possibility of a canceled cycle.  So, what was left?

Ultimately, we opted to go with IVF.  Sure, the cost was much higher, but the control was too.  Over-response wouldn’t spell doom for the cycle, and, in the unlikely event that I under-responded we could still cancel the egg retrieval and embryo transfer (the most expensive procedures) and resort to timed intercourse.  The reverse was not true, however.  If we opted for timed intercourse and I over-responded my insurance did not permit us to convert a timed intercourse cycle to an IVF cycle.  IVF required pre-authorization by the fertility department at my insurer and that paperwork took too long to be completed to allow for conversion to IVF.  On May 5, 2012, we decided we’d go for broke.  Shoot the majority of our infertility benefits on one attempt at IVF and hope for the best.  I did all the additional pre-screening required (carrier testing for cystic fibrosis, nutrition evaluation and food logs, etc.), started acupuncture, began birth control pills, paid a non-refundable “cycle fee” of $300, got my insurance pre-authorization, and waited for RE#1’s IVF coordinator to call.  I waited, and waited, and waited.  Finally, my IVF cycle was pre-approved by my insurance on May 29, coincidentally the same day I was two states away interviewing for what would ultimately become my new job.  With pre-approval secured and a month of birth control suppression under my belt I was certain I’d be starting my cycle any day.  Then the IVF coordinator, a woman I’m thoroughly convinced is both the nastiest and stupidest woman I’ve ever met, called to schedule my cycle.  On May 29 she scheduled my cycle to begin on July 28.  I was devastated.  I asked why I had to wait and she said “our June and early July cycles are full, this is the best I can do.”  I crawled into my hole and settled in for a long wait.

On June 12 I received an email from the IVF coordinator informing me that the RE’s negotiated rates with my insurance for IVF cycles was doubling beginning July 1.  At our consult on May 5 we had been told our $10,000 lifetime max typically stretched to include the bulk of two fresh IVF cycles.  (Medications came from a separate $10,000 pot which helped a ton, and we anticipated I’d need low doses of meds due to my PCOS.)  Now, with the new negotiated rates, my insurance would not even cover one fresh cycle in its entirety.  I was furious.  It became very clear to me why, exactly, I’d been bumped from the June cycles — had I cycled in June the RE’s office would have made half as much off of my case.  I retired to my special “phone calling room with a door” at work (also known as our broom closet) and proceeding to scream and cry at every individual that worked at my RE.  I ultimately told them to shove their practice, shove their IVF, and shove their horrid IVF coordinator out a window.  (And, that’s probably being a little gentler than I actually was.)

On Friday, June 15 we canceled our IVF and separated all ties with our first RE.

On Monday, June 18 I was offered a new job in an infertility mandate state at nearly twice my old salary, 10 times the respect and responsibility, and 100 times the potential for upward mobility.  With no potential for fertility treatments in our future, I jumped.  I’m typing this from my gorgeous new (old) house, in my sleepy friendly village, a few blocks from my amazing new workplace.  In many regards, life couldn’t be better.

Except for one thing – I still regularly wonder what would have happened had we gone through with that IVF.  I love my new home, my new job, my new friends, my new colleagues, but I’d love being the mother to the two week old that I’d have from that IVF right now even more.  But, we can’t spend our lives wondering, I suppose.  Or can we?

One of the primary questions you confront when battling infertility is whether you should live for the now or live for the what if.  When I opted to accept a new job and move, I did a little of both.  Most certainly my “now” is better.  Our social life, home life, work lives, and relationship our stronger here than they were in our old state.  Separating myself from the physical reminders of so many painful memories – my first miscarriage, my Hashi’s diagnosis, the room I’d always planned would be our nursery – has been welcome.

But, a small part of me still admits that the “what if” factored into the decision as well.  Sure, the path to pregnancy here wouldn’t be as immediate as it might have been had we stayed behind and bounced to the competing RE practice across the medical complex parking lot from RE#1, but here I would have a slightly more infertility friendly state on my side.  Unlike our previous insurance, this state mandates that infertility treatments up to, but excluding, IVF must be treated by the insurer as if they were any other medically necessary treatment.   Our next cycle (should we get the green light to try again from the rheumatologist tomorrow) will involve injectable stimulation meds, an injectable trigger, injectable blood thinners, and injectable progesterone support all for the cost that I routinely paid for Clomid last year.  There is no switch we can trigger to cut off my lifetime supply of benefits and, though it still isn’t entirely in my or my doctor’s hands, some amount of choice has been returned to us from the hands of my insurer.  As an unfortunate trade off, IVF is permanently off the table for us here unless we save up and take the plunge 100% out of pocket.  All visits, tests, procedures, and medications used in conjunction with IVF are specifically excluded in full from my new insurance.  My state mandate still lists IVF as “experimental.”

There’s one final element of our decision to move that I classify as addressing the “what if.”  Should we ever succeed, motherhood here will be incredibly more fulfilling than it would have been there.  Living in modern-day Mayberry – this land with beautiful parks, friendly villagers, devoted schools, and neighbors who don’t own keys to their homes because their front doors have never been locked (NOT an exaggeration, btw) – literally makes my uterus ache with want.  Now that spring is springing I hear the babies on our block giggling and crying through open windows, I see the little ones in the park run in their awkward little goose-steps, and I’m eyeing my next-door neighbor’s suspicious little belly that I fear portends a sibling for 2-year-old T.  And it all smacks of two very different what if’s.  First, the what if that brought us here.  That silent hope that someday I’d be carting our little ones to the weekly farmers’ market in their little red wagon.  Second, and much more common these days, is the what if that may chase us from here in coming years.  What if I’m never able to join in fully in this community?  What if the giggles and strollers and parks and la leche league posters in the coffee shop become too much?  What if this is just another stop in my career, rather than my permanent professional home, because I can’t bear living child-free not-by-choice in Mayberry?  What if, it seems, we made entirely the wrong choice last summer?

A year ago yesterday I was at peace.  For the first time in over a year I had hope.  Tonight, I have a different type of peace.  The peace of a sleeping husband by my side, a lovely kitty at my feet, and a new patio furniture set on our deck.  But, I don’t have hope the same way I did back then.  Another year spent in this infertility demolition derby has left its dents.  I’ll let myself wish.  I’m wishing right now for good news from the rheumatologist tomorrow.  But, wishing is different from hoping.  Wishing is somehow more whimsical, more ethereal.  When one wishes they don’t always expect it to deliver, so the soul is crushed less when it doesn’t.  Hope is for those that desperately want and expect a desired outcome.  I just don’t have the energy to hope anymore.  I left my hope up on the shelf next to my ill-fated IVF.

Inequity

Today I paid what I hope will be the last of the bills associated with my third miscarriage.  And, it was the hardest of them all to pay because of the situations that gave rise to it.  Perhaps I’m numb, perhaps my spirit is just broken, but these days my emotional pain doesn’t center around the fact that we lost another potential child in February.  Instead, I just grimace at the general unfairness of it all, and the realization that this process has been made so much harder thanks to the American medical and insurance systems.

Our most recent pregnancy lasted to 9 weeks, but for only a week of that time did we actually have cause to hope.  Like both my prior pregnancies, my beta HCG values throughout the pregnancy were problematically low.  In the majority of normal, healthy pregnancies one’s HCG value will approximately double every 48 hours for the first few weeks of pregnancy.  But, like so much else in infertility and early pregnancy, beta doubling times are just an odds game.  Healthy pregnancies result from abnormal rises, normally rising HCGs can result in miscarriages.  But, when your in the thick of beta hell, it’s hard to believe you’ll come out on the right side of those odds.  And, at least so far, I never have.

The betas for my last pregnancy went as follows:

  • 3w5d: 41
  • 4w:     97 (doubling time 38.64 hours)
  • 5w:     1113 (doubling time 47.72 hours)
  • 5w6d: 1479 (doubling time 351.08 hours)
  • 6w5d: 2038 (doubling time 363.22 hours)

At 5w6d we were told to expect a miscarriage, then three days later, at the appointment scheduled for the purposes of confirming the loss, I saw the heartbeat on ultrasound for the first time.  That little heartbeat hung around for 3 more weeks despite extremely poor bloodwork results.  On Valentine’s Day we found out that the heart had finally stopped.  We weren’t destined to be one of those lucky couples who beat the odds and succeeded despite bad lab results.

The heart stopped on a Thursday, and we decided straight away that we wanted to have this embryo tested for genetic abnormalities.  The best way to obtain a sample capable of being testing was to have a procedure called a dilation and curettage (D&C) performed.  Essentially, the cervix is dilated and the “products of conception” (POC) and some of the uterine lining are scraped out and sent off to pathology.  (If there’s one thing you learn pretty quickly in this repeat loss/infertility game, its that so much of this “medicine” is just about as low tech as you can get.  And, as a result, hasn’t actually changed all that much over the years.  During my first miscarriage, my husband’s 85 year old grandmother (who had suffered losses of her own as a young woman, including the heartbreaking loss of a new born) asked why we weren’t just having a D&C.)

So, heart stops on Thursday, we ask for a D&C on Thursday, we get scheduled for the following Wednesday.  Absolutely astonished doesn’t even come close to explaining my state of mind at the time.  Aside from the fact that I was basically getting sent home (yet again) with a dead baby inside me, I was irate that I was being made to wait nearly a week during which time I was certain I would either miscarry on my own or, if not fully miscarry, at least lose the opportunity to perform the testing that we needed to have performed as the products decomposed.  “Sorry, that’s the best we can do,” said one of the revolving door of smug nurses.  So, we waited.

On Friday afternoon I started to spot.  I called right in.  “We can move you to Monday, but that’s the best we can do.”  Tears and screaming and a lot of, “I’m not going to fucking make it ’til Monday”s went unheeded.  It was, after all, the best they could do.

On Saturday morning the contractions started and the bleeding picked up.  My clinic has Saturday hours, so I called first thing and reported that the process was well and fully started.  The response, “Well, I don’t know what you want us to do for you, I’ve already rescheduled you for Monday!”  Being no stranger to this IF game, I asked if I could collect the products at home and drop them off for testing at least, to which she replied that their clinic won’t test products passed naturally.  She strongly insinuated I was bat-shit crazy, actually, to even think that naturally passed products could be tested.  Through my tears and hysteria I told her of my friend, C, who did just that for m/c #2.  This bravest of mothers who wandered the empty halls of her local hospital on Christmas Eve carrying yet more lost hopes and joy in a Tupperware container, kept cool with a bag of frozen peas.  I told her of the other women, whose stories I’m less familiar with, but who still got test results from products passed naturally.  She remained completely unfazed.

So, Saturday morning I called the on-call nursing line for our local rural hospital.  Without mincing words I explained the situation, I asked if they had a pathology lab in their large hospital network, and I inquired whether they had doctors on call at the emergency room that could perform a D&C.  She was the first faceless voice on the phone throughout this entire process to give me any sympathy.  I was actually completely taken aback when she offered her condolences and genuinely asked me how I was holding up emotionally.  Her care and concern actually reminded me that, wait, there was some heavy shit going on right now and I wasn’t just calling in to make an appointment for a mild medical inconvenience.  She promised to get in contact with the OB/GYN unit at our nearest mid-sized hospital (about 30 minutes from home), and call us back.  When a representative from that unit called back about 15 minutes later, I was in the bathroom bearing down and passing small clots.  My husband answered and was informed that, yes, the staff could perform a D&C and that, yes, the products could be sent off for testing.  In the middle of a snow storm we bundled ourselves up and headed for the emergency room.

An hour of waiting and intake and vitals later, the general ER doc came in to do a pelvic exam.  He noted I wasn’t yet bleeding heavily (something we had repeatedly told them on the phone and during intake) and informed us he doubted they’d be able to help us.  Next in the room was the OB on call.  He reiterated that I wasn’t bleeding heavily enough or in enough distress to merit an emergency D&C.  I’ll never forget the next words out of his mouth.  “You aren’t an emergency and it’s a Saturday.  My team doesn’t work on Saturdays, and I won’t pull them in for this.”

Abandoned by the clinic that helped get me pregnant and whom I’d already paid hundreds of dollars and abandoned by the nearest OB/GYN unit, we walked out of the hospital with the two sterile specimen collection jars they gave us to collect the embryo once I passed it at home.  Today, I paid that ER bill.

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By my best estimates, my miscarriage cost us about $600 out-of-pocket (and, of course, much more before insurance).  It would have been more, but I had already met my individual deductible for the calendar year on January 9 after my second round of pregnancy bloodwork.  Included in that $600 is Mr. But IF’s deductible for chromosomal testing performed on him during my D&C, the D&C we did ultimately do (for who knows what reason, I’d already passed the products), and my $75 visit to the ER where I received no testing and underwent no procedures.  Those are some expensive specimen jars.

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Earlier in the week I needed to look up eyewear coverage through our new insurance since Mr. But IF and I are both sorely overdue for new glasses.  I don’t know why I do it to myself, but every time I log in to my insurers site and bring up the detailed policy description I still find myself scrolling down to the infertility section.  It’s always a punch in the ovaires to read:

IVF: No coverage

but, this time, I opted to read further.  It continues:

Elective sterilization: 100% covered (no co-pay or co-insurance)

Abortion: 100% covered (no co-pay or co-insurance)

And, that’s the moment I realized what I had done wrong two months ago.  Instead of placing my fate in the hands of my rural podunk hospital, I should have found the nearest abortion provider.  I’m absolutely not being facetious, either.  The services they perform are the services I needed, and I don’t expect they would have sent me away with a collection jar.

I’m no idiot when it comes to the whys and the hows of the medical insurance industry, and, though I find it morally abhorrent  I also understand it is in their financial best interest to ensure I don’t procreate.  That said, my situation underscores the flaw in this supposedly unemotional, bottom-line only approach.  I paid for my miscarriage, but would have had no financial obligation for an abortion.  Medically, nothing separates an abortion from a miscarriage.  Indeed, miscarriage is not a medical term, the appropriate nomenclature is either fetal demise or missed abortion.  It is hard to take a step back from this situation and not feel like I am being punished for the mere act of wanting a child, because it is only that aspect of wanting and trying that separates my medical history from that of a woman wanting an abortion.  Indeed, the contrast is even more stark when I recall that my ectopic was, in fact, medically terminated.  I’ve had an abortion, yet my insurer didn’t view it as such.  And the only reason I can fathom?  Because these unemotional bottom-liners do, in fact, care that my motivation was to become pregnant.

These are always difficult discussions to have with myself, because if there is one thing infertility has done to me it is that it has strengthened my resolve to support a woman’s right to choose.  Years of giving everything I have to trying to become a mother, has made me willing to fight tooth and nail for other women to have the choice to not become a mother.  Part of it is motivated by self-interest – it’s hard to live in this era of personhood hysteria and not see the slippery slope that leads from anti-abortion activism straight to my broken ovaries – but, another part of it is also my growing belief in the importance of choice.  My infertility has stolen choice from my family-building decisions, and it’s been exceptionally hard for me to accept that my busted body, lack of access to quality medical care, and an insurance system that views my infertility as akin to breast augmentation, has removed my ability to choose when and how to grow my family.  Therefore, I can’t in good faith put countless other women and men through the same loss of control, the same hell, purely because their politicians won’t get out of their bedrooms.

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…

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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.

The Unbearable (Un)Lightness of Peeing

It dawned on me yesterday as I was sitting in the-worlds-longest-meeting that I haven’t had a pee session in the past 3+ years that wasn’t imbued with more meaning than a simple emptying of the bladder should ever rightfully have.  As the meeting dragged on, my cramping picked up, and I found myself both praying and fearing that my period had arrived.  We’ve been waiting for the witch ever since we learned that our last baby’s heart stopped on Valentine’s Day (there’s a fun coincidence, eh?).  35 days and a 5-day course of Provera later, we’re still waiting.  But as awesome as it would have been to have her crash the meeting, there’s still the fact that me and my khaki slacks really didn’t want to stand up and find I’d bled all over my boss’ boss’ chair in front of said big boss and little boss.  Still, I was sad when my subsequent potty trip showed all worry was for naught.  (If anyone finds my period, btw, can you give her directions to my house?)

Still, the experience got me thinking of all the crazy flowing through my mind at any given moment.  If you (like me) think pregnant women go unnecessarily hog wild with the worry (“No soft cheese for me, please,” “No, that eye dropper full of wine may ruin my yet-to-be-born honor student’s future academic performance,” or “Oh my God I ate lunch meat without microwaving it!”), you should take a long hard look at you friendly neighborhood infertile’s day-by-day.  Preggers McFertile over there turns health Nazi for 9 months; Ms. Bitter Infertile will be living in the neighboring ghetto of insanity for years, if not decades.

Some worries, those worries forged in n00b-ness, fade.  I still remember that first post-TTC trip to my in-laws where the hubs and I felt all James Bond and Miss Moneypenney while diverting all offers of caffeine and alcohol with a wink and white lie.  Over 3 years later, I’m sitting here chugging down my Metformin with some strong black coffee, and dreaming of what alcoholic delight I’ll partake in at tonight’s exhibit opening.  So, yea, some worries fade.

In their place, others remain and new ones appear.  Yesterday, I touched on my newest worry, born out of a totally unexpected positive ANA result.  Today has been all about trying to find a rheumatologist willing to see me sooner than June (why is this so f-ing hard?), and trying to decide whether to move forward with our next cycle prior to seeing a rheumy.  Infertile mind a-racing?  Shouting matches with medical receptionists?  Multiple emails to my RE before noon?  Check.  Check.  And check.

What’s the inspiration for my most prevalent wonder and worry throughout the years, though?  That’s right, my pee.

Unlike many of my infertile sisters, I think I’ve spent at least twice as much time in the past 3 years wishing for my period to arrive, than I have hoping it would stay away (for, oh, 9 months?).  And, that’s probably a gross underestimate.  PCOS, Hashi’s, anovulation, surgery, miscarriages – it’s all led to more anxious waiting for a period than even the sluttiest little teenager could appreciate.  So, I spend at least half my time in the ladies’ room poking and prodding and praying for even slightest hint of red.

With three miscarriages under my belt, another quarter of my time has been spent occupied with said poking and prodding and the always delightful shoving in of progesterone suppositories.  Same story as above, save the hope is for no red and you get the added bonus of the aroma and appearance of week old Crinone.  Rounding out the final quarter of my time are the hours spent peeing on things – ovulation tests, home pregnancy tests, my hands – in the hope of gaining some small sliver of understanding of what my broken body is up to.  Wishing for red, wishing away red, cursing the red.  (Don’t even get me started on cervical mucus!)

Peeing is complicated.  It’s not light.  It’s heavy.  And not even a bowler hat can change it.

Birthing a blog…

… and nothing else.

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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.

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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.

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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.)

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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.