Why’d we bother?

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

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

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

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

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

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

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

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

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

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

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

Today I am grateful

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

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

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

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

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

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

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

Different kinds of moving on

I’m 7 days from cycling again, and I’m so damn ready to move forward.  I’m ready to start posting obligatory pictures of my meds and sharps container, to start sharing the results of our stim checks, to start whining about the crazy shit the drugs are doing to my brain.  It’s time.

I also realized something else today.  I need to move on in another sense.  I need to pull away from the online support community that has sustained me for the past 3 years.  I need a FF vacation.

I can’t count the number of times I’ve thanked my lucky stars that I’m infertile in the age of the Internet.  We hear often about the sense of isolation and different-ness that so frequently accompanies infertility, but I have to say that hasn’t been that large a part of my own journey with IF.  From day one I sought support from faceless strangers in the computer.  I tried a few free and pay groups on for size (hint to the wise: ignore the free groups, they’re full of total morons), got used to typing up my story, and jumped in head first.  I still remember that within 1 month on FF I had PMs from women telling me I likely had thyroid disease, endometriosis, and PCOS, and begging me to push my doctors.  I still cringe when I read through my replies.  “But my thyroid was tested in 2009 and it was fine!” I’d counter.  “My doctor said my ultrasound showed no signs of endometriosis,” I’d explain.  “I had blood work done and it showed no PCOS,” I cautiously told the clearly hysterical woman on the other end of the world.  Well, turns out my normal thyroid was totally not, endometriosis cannot be diagnosed with an ultrasound, and my GP had done the wrong blood work to check for PCOS.  Turns out these lay-women in the computer diagnosed me more accurately, more completely, and with more compassion than any doctor I had then, and all that I’ve had since.  FF was my lifeline.

Something strange happens, when you hang around the same online forums for too long.  First, if you have any sense of intellectual curiosity and drive for answers, you wake up one morning to find you’ve gone from being the question asker to the question answerer.  Your time on the site transitions from time spent learning, to time spent teaching.  And, I’ll be the first to admit that that was initially a pretty exciting change for me.  As it dawned on me that I knew more than most about my specific diagnoses (Hashi’s first and foremost), I suddenly had this desire to save all the lost and fumbling infertiles from the big bad world of ignorant doctors, “natural fertility cure” peddlers, and arrogant fertile wive’s tales.  I created FF’s Hashi’s/hypo board, I threw my heart and soul into being a resource, and it was wonderful.  There’s something about being a lifelong academic over-achiever that makes the mere act of shameless proselytizing make up for all the ills of one’s world.  I’m as barren as barren gets, but at least my mind is fruitful.

But, let’s be brutally honest here.  What happens when you share your hard-earned tips, tricks, insights, and wisdom with those around you?  Well, lo and behold, their situations often improve.  And, in the world of infertility improvement is measured by one yardstick – lasting pregnancy and lifelong motherhood.  About 6 months ago I started feeling more and more like someone was cheating.  I did all my homework, I spent my days in the library, and I crammed for all the tests.  All the while countless others cribbed my notes, played hacky-sack on the sunny quad, and ended up with the positive pregnancy tests.  I don’t like being cheated.

I started to retreat into my other safe havens – those forums of other long-timers, those ever-bitter buddy groups of women that had also been cheated again and again and again.  But, with no progress in our own pregnancy journey I didn’t know what to say.  “Yep, still waiting?”  How many times can that be your contribution?  (Well, let’s see, according to this blog MANY times, but whatever.)  Sure, we talk other things.  What good movies have you seen, what did you do last weekend, how’s the husband’s sperm count, but here’s the final awful kicker.  I honestly don’t care.  Now, don’t get me wrong, I’ve stayed exceedingly close with my old original FF buddy group (many of whom have long since departed FF themselves so we stay in touch on Facebook) and, in that limited setting, I do very much care what those ladies had for dinner, where they’re going shopping this weekend, and how they’re sick family members are getting on.  But, that’s a level of interest that has grown over years, not minutes.  To try and recreate that level of intimacy with a whole new group of women on FF is beyond me right now.  Especially because, well, they’ll likely be moving on and leaving me behind like so many others before them.

This brings me to my second issue with my current life on FF – I’m tired of being left behind and I’m tired of watching others get left behind.  That original buddy group that I remain so close with?  Only 5 out of 24 of us are still trying to conceive our first child.  That’s the same number that are currently pregnant with their second child in the time we’ve been together.  Why do I stick around, why doesn’t this hurt more, why am I so bitter toward the successes of some women and so happy for this one small group?  Well, as I said above, because I still care.  It’s much the same with my in-real-life support group.  With each success there (and there have been quite a few lately!) I feel extreme joy.  Because I care.  You know when I don’t care?  When I just met you five minutes ago.  And, in recent months on FF, I’m encountering more and more women I figuratively met five minutes ago because so many of the ones I met 2 years ago are busy raising their babies.

Well, raising their babies if they are lucky.  The final reason I think I need to step away for a bit is because of the others who aren’t so lucky.  And, to be totally honest, I think this is the biggest reason of all for my plans for FF radio silence for the foreseeable future.  Though the new pregnancies of Internet strangers are hard, it’s the repeat failures of Internet friends that are utterly devastating.  As I sit here whining about being left behind, many of those same women that dealt with me when I was an insufferable n00b are also still on the battlefield.  They are mourning lost pregnancies, watching marriages fail, applying for loans to fund one more cycle, making impossibly difficult choices.  All with more grace and composure than I could ever hope to muster.  And, it’s in thinking about these women that my world starts to shatter and my angry fists raise to the sky.  What exactly do you say to someone who has been trying for 10 years, who has had 7 miscarriages, whose 6th IVF just ended in a chemical, or who will never even get the chance at IVF because of the financial burden?  I’ve written enough “Life sucks,” in the past year, and I don’t know how many more I have left in me.

In thinking how to phrase this post I found myself reflecting on prior conversations I’ve had about what the appropriate terminology is for when one decides to cease infertility treatment, bench third-party options, and say no to adoption.  I know I’m not giving up FF.  That would imply I won’t be checking in on those I care about (which I will), that I won’t use it to ask questions as we move through out injects cycle (which I will), and that FF is something I can quit cold turkey (which I can’t).  And, while I think of our next cycle as moving forward, leaving FF doesn’t feel like that either.  Forward implies progress, which I don’t think leaving FF is.  Leaving FF is not progress, it’s just a change.  A change that hopefully improves my well-being, raises my spirits, and removes some of the anger.  But, I totally respect that it may do none of those things and I may return.  If I do return I wouldn’t think of it as a step back, so I refuse to think of this decision as a step forward.  Ultimately, I think I’m just moving on.  I’m putting my energies into different venues.  First, into my own well-being, my relationship with my husband, my upcoming cycle, and this very blog and the bloggers and Twitter types that follow it.  And, a very close second, into my peer-led support group.  Those women and men are so deserving of my attention and I want to ensure they are getting it in the manner that they need it.  Finally, I want to set aside a little more time for advocacy.  As we stare childfree-not-by-choice squarely in the face, the advocacy component of infertility is calling my name.  While I’m not sunshine and rainbows enough to be able to say that I’m infertile for a reason and that reason is so that I can give back to the cause, I am stubborn enough to admit that a small part of the injustice I feel toward my infertility can be alleviated by putting more energy into making sure life is better for future generations (even if no one in those generations share any of my genetic makeup).  At the very least I need to start fundraising in earnest for the Walk of Hope next month.

So, moving forward while moving on.  I can live with that.

It’s been a week, alright

It’s been a strange week.  A stinky week and a beautiful week.  It’s been a week.

Monday: I took my last shower on Monday.  Our lovely old house is now sans-full bath as the renovations have begun.  Luckily, we still have a powder room with the essentials (toilet and sink), but for the bigger cleanliness rituals we’re looking to the kitchen sink and the local gym.  It’s been fun!  (And stinky.)

Tuesday: Oh, Lord, Tuesday.  I’ve already written about Tuesday.  Tuesday kinda sucked.

Tuesday didn’t totally suck because I got to see my RESOLVE girlies at our regular monthly support group meeting.  We welcomed three new folks to the group, which always elicits part joy and part sadness, and I fielded a question about whether or not we’d had any recent “successes.”  That one stung.  I didn’t know the answer and feared the worst as some usually chatty gals that I knew were in active treatment had fallen very silent as of late.  I responded to the group that I was quietly hopeful I’d have news to share soon, but left with a somewhat heavy heart.

Wednesday: Wednesday was Advocacy Day!  And, as if to reiterate why exactly it was I couldn’t leave work and travel to D. C. in the midst of finals week, work was insanely busy.  I managed to squeak out a few letters to my senators and representative, caught up on my Twitter stream through the early evening, and drank myself silly at trivia that night.  That infectious combo of advocacy day-fueled inspiration and trivia night-fueled intoxication went a long way toward easing some of the pain of Tuesday’s disappointments.

Wednesday wasn’t all hope and beer rainbows, however, because I’m a total nut-job heavily motivated, assertive, and informed patient.  After my rheumatologist appointment was canceled on Tuesday I made it all the way to Wednesday afternoon before I called back and demanded they tell me something.  I seriously should know better than to hope a medical receptionist would be helpful by now.  I did badger convince her to release the very basics of my lab results to me.  See, thing is, I was fairly certain the receptionist would say, “Yup, everything is marked as normal.  Have a nice life!”  And, while I have a paranoid healthy respect for the fact that “normal” labs are not, in fact, always normal (see: Hashimoto’s Manifesto), I was happy enough to have the receptionist tell me “normal,” walk away knowing I’d most certainly be cycling again at the end of this month, and leave my crazy informed followup questions for the rescheduled rheumy appointment on Monday.

Thing is, I knew from the moment the receptionist’s “Umms” started that not everything was “normal.”  She finally regained enough composure to helpfully say, “I don’t know about this rheumatology stuff.  Oh my I can’t even pronounce any of these!” <dagger, stabby, dagger>  I asked her specifically about ANA speckled (the previously elevated value that landed me at the rheumy in the first place) and she said “I see an ANA, but there is nothing about speckled.  ANA homogenous is in red, though.  It says 1:320.”  So, great, another unexplained elevated ANA (normal, btw, is 1:80), and a missing lab value I most definitely need.  Someone fell down on the job.  I’m guessing my totally incompetent rural hospital lab failed to order all the tests requested.  Highly likely given the fact that the phlebotomist – you know, the one that offered to be my surrogate in February when I was in there every other week due to my failing pregnancy – said to me, “Wow, I don’t know any of these tests!” when I went in last week for the draw.  I watched as she kept plugging random combinations of words into her computer terminal in a desperate hope of finding the right tests, and was fairly certain at the time that she just gave up and skipped a few.  Of course, when one is holding back tears forged from the rage of repeated medical incompetency, it’s hard to correct the perky phlebotomist.  Now, the other option is that the test was actually performed and reported but the receptionist can’t read.  Honestly, that’s a highly likely scenario there, too. <stabby, dagger, stabby>

Finally, the receptionist said, “I’m not going to try to pronounce any of the rest of these, but I will say only one other is flagged as abnormal.  I’m not allowed to give you the value, but this thing called ‘C Reactive Protein’ is high.  You’ll have to ask the doctor about that one.”  Hello, heart, welcome to my stomach.  Seriously, not ANOTHER thing!?  So, here I sit knowing I’m most certainly not “normal” (shush up Mr. But IF), but not knowing whether these values mean much of anything.  All I’ve been able to dig up on C-reactive protein is that it is a sign of inflammation or infection and, supposedly, predisposes one to heart disease.  Fuck the heart thing, my whole grandparent generation died of strokes and heart attacks in their 50s so I’ve known for a long time I’ll be in the ground looong before Mr. But IF, so whatevs.  I just want to know if I’ll be leaving grieving young children behind or not dammit!  What does this mean for infertility and miscarriage?  So far Drs. Google, Twitter, FF, Facebook, and, unfortunately, Braverman, have left me hanging.  Anyone?

Thursday: Thursday was pure beauty.  You know that unusually quiet RESOLVE gal I mentioned?  Yea, IVF#1 success!  And, an early member of the group who wrote late last year to say she’d be pursuing adoption?  Baby boy home safe and sound and in his loving parent’s arms!  And, for good measure, another member I’d lost track of that had been informed by her RE that her options were donor egg or nothin’?  She’s disappeared of late because she is currently entering the second trimester after an own-egg IUI.  Combine all of that with the post-rain, puffy cloud, amber sunset we saw as we drove home from picking out our tile and light fixtures, and all I have to say is life is wondrous and beautiful.  (Seriously, I’m not crying, it’s, um, just these damn allergies!)

Friday: Well, Friday’s barely here, but there can’t be anything wrong with a Friday.  (Well, maybe day 5 sans-shower might dampen it a bit.)  Anyway, I’m planning on taking my inflamed/diseased/who-the-hell-knows self out on the town tonight.  This will likely involve some porch sitting with friends, growlers from the local micro-brewery, and live music from a great local band as the town collectively celebrates the college kids getting the fuck out the beginning of summer.

I’m going to stop my prognostication there.  I’ll save discussions of Sunday for Sunday.  Well, assuming the hangover is gone by then.

A support group without coffee…

first-birthday-cupcakeTonight is the regular monthly meeting of my RESOLVE support group.  And, it’s a pretty special one too, if I do say so myself.  It is the group’s 1 year anniversary.  That’s damn awesome.

And, a little hard to believe.  On one hand, how has it only been 1 year.  When I think of who I was on the eve of founding the group, I honestly shudder at my naivete.  I had just come out of the IF closet to my family, we were just about to embark on our first cycle since my methotrexate-induced miscarriage the prior November, and I had just completed my initial workup and laparoscopy with RE#1.  I was also totally terrified of actually having to speak to real, live, hurting strangers about that deep pain that united us.  And, above all, I was totally convinced the first meeting would be me alone in a room with my husband since I clearly was alone in my struggle and no one else would show.  And, I kept joking, we wouldn’t even have the support group pot of coffee TV promises us.  Coffee and TTC don’t mix, you know.

In actuality, while terrifying, that first meeting was one of the most uplifting experiences I’ve had on this long journey.  And, I was most certainly not alone.  8 women and men attended that first session.  In the year since, one couple has had their IVF miracle, two couples have endured miscarriages, one is jumping back into treatment with a faith and optimism that warms my heart each time I see her smile, and another is rounding the final bend in her pursuit of pregnancy through donor embryos.  Attendance at our meetings has ranged from 7 to a room-busting 23, and my current e-mail list reaches 38 women.  Nine couples are currently building their families through pregnancy or adoption, and several of those women have transitioned from receiving support at our monthly meetings to engaging with our “Pregnancy after infertility and miscarriage” Facebook group in an attempt to work through the unique (and often unexpected) pain and worry that comes when pregnancy is achieved after a long struggle.  We’ve discussed topics ranging from jealousy to heartache, marriages to holidays, and surgeries to semen analyses.  Our stories are all so different and so impossible to whittle down to simple one-liners here, but each of their stories has become my own story, too.  I laugh with them, I cry with them, I celebrate with them, and I hurt with them.  Coffee or no coffee, this group energizes me and gives me the strength I need to keep on going.

On the other hand, how has a year passed already?  Milestones are hard for many of us in the infertility community.  I know the due date for each of my pregnancies, and silently mourn them each time they roll around.  The date of our first RE appointment, the date I got the call about my Hashi’s, the morning I found both my tubes were blocked, and the moment I saw my first positive pregnancy test, are all etched into my brain.  Not only due to the memories they evoke, but also because with each new doctor’s appointment, each second opinion, each new procedure, I have to recount them all on demand.  It’s hard to move on when you so often have to look back to provide a full medical history.  There’s a hint of that pain in this anniversary milestone as well.  Second on my list of fears when I started the group, just below “no one will come,” was the worry, “What if I get pregnant right away?”  It’s so common a worry that a good part of my training was focused on it.  Yet, it wasn’t a worry I clearly needed to be fretting over.  And, when I expand that worry out to, “What will happen when all my friends from the group move on without me?” it breaks my heart even a little more.  While I’ve moved 9 women to my “graduates” list, that means many, many more remain behind.  As I grieve with them, it adds fuel to my advocacy fire.  This journey is not mine, it is ours, and because of that I feel more justified in fighting the misconceptions, the ignorance, and the arrogance that so many bring to the discussion of infertility.  And, only a few short weeks away from National Infertility Awareness Week, I’m happy to have this reminder of these strong women and men I stand behind.

So, for the audience participation part of the program, have you attended an in-person support group?  What was your experience?  What was discussed or what did you wish was discussed?  Is there a support group in your area?  Would you consider starting one?  Catch you all in the comments!