BlogHer '15 and Space for Infertility

Last weekend at this time, BlogHer '15 was wrapping up.  I registered for my non-refundable pass in December, before I had any guarantee that we'd end up pregnant by the time July rolled around.  I didn't appreciate how gusty? illogical? that was until I was at the Hilton, walking around and sitting in on panels.

Since I've been going (2009), the BlogHer conference has always been geared to what used to be "mommy blogs" and what are now usually "parenting blogs."  (That shift is all to the good, by the way.)  So I could hardly feel surprise that sponsors were heavily parent/kid-centric.  There were multiple baby food brands, Medela, Merck for Mothers, pediatric vitamins, the Today Show "Parenting Team," and more.

If anything the panel topics were less parent/kid centric than they used to be.  For instance, this year there was also a marked uptick since 2012 (the last year I went) in panels solely for the business, revenue generation side of online work-life.

But here's what stuck in my mind:

- There was a single panel on disability and blogging.  There was a single panel on mental health/illness and blogging.  These were the closest panels that would've approached anything touching on infertility. 

- The Saturday lunch keynote included a short film and a "fireside chat" with professionals and activists (the head of Merck for Mothers, and Christy Turlington Burns, a doula, and the moderator) discussing maternal mortality in the U.S.  During this panel, someone onstage made sure to appeal to the crowd by reminding us that "most of us" there had experience (or would do) childbirth. 

- The Voices of the Year keynote on Friday almost exclusively featured a heavy contingent of parent voices.  (Including, I should note, an honoree who built her family through adoption.)

- The conference has become, from my privileged perspective at least, consciously inclusive.  The panel speaker groups this year were better balanced than I'd ever seen them, in terms of not being 80% straight white ladies.  But in every panel I saw, no matter the topic, there was a parenting site whose pictures were put up on the projector.  Or there was a moderator breastfeeding her daughter throughout the panel (which is awesome, by the way, where can you do this if not at BlogHer?).  Or there was a Voices of the Year installation featuring a piece on adoption and the piece's picture of an 8-month pregnant belly.

So what stuck, not just in my mind but in my throat, was how completely impossible it could be to attend BlogHer as an infertility blogger.  Whether actively pursuing treatment, waiting out finances or health issues or life issues on the bench, or whether making your way to redefining yourself as child-free not by choice, BlogHer could be just. completely. impossible. 

I can't describe what it's like to be bombarded by pregnancy and parenting while you're not sure you'll ever get to be a part of them.  If you want to participate in something like BlogHer, you either muscle through it, coping moment to moment as best you can, or you don't.  You don't go.  You skip family birthday parties and holidays.  You stay away from places where parenthood and children are bound to come up, or you steel yourself when you can't get out of it. 

You try to explain to people who've never been where you are just what it feels like, and sometimes they get it, and sometimes they don't, and you just have to deal with it.  You live, either temporarily or maybe forever, with the fact that the culture just doesn't include you in this important way.

This is nuts, when you think about it.  1 couple in 8 goes through infertility.  1 in 8!  That's not exactly rare.  There are plenty of blogs chronicling parenthood on the other side of infertility treatment, so this isn't a blanket ignorance thing, which makes it even harder for me to parse the complete lack of safe space IF/CFNBC bloggers might find at a women's blogging conference, run for women, by women. 

Anyway.  If sheknows media sends around a post-conference request for opinions, you can be sure I'll respond.  (They acquired BlogHer early this year, so we'll see how they handle post-conference outreach.)  But in the meantime, do me a favor and think a little about the ways in which we take pains to make spaces safe and welcoming for different histories and experiences, and how one in eight people can relate to this particular experience, the numbers involved in a space like BlogHer, and how those things come together. 

Team Pink

If it seems like I haven't been around much the past couple of months, it's because I painted myself into a bit of a corner by mentioning IVF.

Much as I love my longtime readers (luff you), a good number of you know more or less who I am in real life, so I straddle that weird line of internet pseudo-anonymity, within a certain infinitesimally small circle.

Basically what I am saying is, our IVF cycle was successful, and I didn't want people in real life to know until we hit the second trimester.  Because when you go through infertility, it is next to impossible to just sit back and assume that everything's going to go all right from here, that you get to keep this wonderful change in your world.

We hit the second trimester a week ago.  We're having a girl.  We're unspeakably excited.

We found out it was a girl on Monday, and yes, that's pretty damn early.  This was thanks to a test called Panorama, type of NIPT (noninvasive prenatal test) that is slowly but surely becoming more widely used in prenatal care, although for the most part they're still not covered by insurance if you're under 35.  These tests look for various potential chromosomal issues -- the Trisomies, various micro-deletions, and in Panorama's case, triploidy -- including assessing the sex chromosomes.

We got Panorama not because we were in high risk categories, but because (here comes more of my entitled feeling toward healthcare) we felt we deserved to know.  Because when you go through infertility, it is next to impossible to just sit back and assume that everything's going to go all right from here, that you get to keep this wonderful change in your world.

So we know, not based on an sonographer's say-so, but on DNA, that we're having a little we nymph with two X chromosomes.

Our first anatomy scan is coming up in mid-late May, and hopefully that shows everything continuing apace.   I can't quite let myself settle into that idea.  The closer it gets, the more afraid I am.  Because when you go through infertility, it is next to impossible to just sit back and assume that everything's going to go all right from here, that you get to keep this wonderful change in your world.

In the meantime, I have a lot of thinking to do about this girl.  Knowing my family at large, and especially my in-laws, I've got to do a lot of thinking about how to talk about and healthily live in body and food.  Knowing me, I've got to do a lot of thinking about how to model assertiveness and confidence.  Knowing about the world at large, I've got to do a lot of thinking about... a lot.

But first I gotta go buy some pink stuff*, and hope to hell everything's going to go all right from here, that I get to keep this wonderful change in my world.


*she said, appalled at herself, for truly, she totally had a unisex nursery planned either way, she swears.  It's just... pink!

Flaunting My Entitled Feels: Why IVF Coverage and Mental Health Coverage Are One and the Same

Several years ago I got a little flak around the Interwebs (I mean, in the extremely limited sphere of influence I had here then; even smaller now) for asserting that I had a right to coverage for eating disorder treatment: that coverage of mental health issues ought not to be treated any differently than coverage of physical health issues.

At the time, the awesome (retired) bloggers Pepper & Paprika shared the post on their FB page (this is when FB was still social-medially [not a real phrase] relevant) and some dillweed hopped on there and called me entitled.

Damn skippy, I'm entitled.

In years past it's probably come up here that the husband's family is Jewish.  I bring this up because, if we had really wanted to, with some measure of hoop-jumping (since I'm not Jewish) we could make aliyah to Israel if we wanted.

Why might we want to?  Well, IVF is subsidized in Israel (for citizens) up to two take-home babies, up through age 42.  (This also goes for egg preservation.)

Without getting into any political debates here about the country policies in other areas, because this is not that discussion: you want to talk about a "pro-life" sort of stance?  I will point you right over there, to the country that makes it possible for the people having the most trouble bringing life into the world... to bring life into the world.

Joining Israel in the list of countries that include significant IVF coverage: Argentina, Germany, Australia, South Korea, Singapore, Belgium, Sweden, Denmark, France, Italy, Finland, the U.K., Quebec... I could go on.

Guess what the average IVF cycle cost is in the U.S.?  $15-30K, when all is said and done.   We have states that "mandate" coverage, but it's laughably easy for employers to opt out of said mandate. And I can tell you firsthand that being in a state with mandated coverage means zilch for plans purchased on that state's healthcare exchange.  My plan doesn't even cover Lupron, a drug used in some IVF protocols but originally developed for prostate cancer, endometriosis, and precocious puberty.  So if the husband develops prostate cancer, I guess we're shit of out of luck?

Even though I'm getting crickets when I talk about IVF here, I'm going to keep doing it.  I went into our infertility journey certain I would never agree to IVF.  It was "just something I can't see myself going through." It needs to be talked about, and in my opinion, it needs to be normalized.

It's hard to envision this country ever rousing up more universal support for ART (assisted reproductive technologies), largely because of the increasingly vocal minority that lobbies against any kind of control over reproduction.

So the only thing for it is to keep talking about it.  You want to be pro-life?  You want more wanted children brought into this world?  Well, gee, that's exactly what the husband and I are trying to do.  We're trying to create a new life, and we can't do it the old-fashioned way. The thing is, we live in this place called the 21st century.  It's time to start collectively acting like it.

The Exciting Intersection of IVF and Body Dysmorphia

An IVF cycle consists of these main steps:  suppression (tamping down the ovaries to coordinate their response later); ovarian stimulation with hormones; egg retrieval; and embryo transfer.

Friday we had egg retrieval, a procedure under conscious sedation in an OR.  The husband and I arrived at the hospital about 7:30 a.m., and by 10:45 (that wait wasn't nerve-wracking or anything) I was in the sub waiting room with another woman ahead of me.

We watched as the OR techs wheeled out women ahead of both of us, post-retrieval, dead to the world, completely unaware and completely vulnerable.  Even knowing it's a 10-15 minute procedure, not even under general anesthesia, that was unsettling to see, to say the least.

When I got to the OR and they had me settle down on the table, I looked up at the lights and started crying.  (Just a little, more like the errant tear rolling out of one eye, then the other.)  It just hit me so hard in that moment: I don't get to make a baby the old-fashioned way, probably ever. I have to have an entire team of medical professionals extracting pieces of my body to even have a shot at it.

They were all incredibly sweet about it, and the embryologist offered to wipe my eyes for me.  It's the little things.

In the recovery room the nurse told me, "Well, you're the big winner today. They retrieved 23 eggs." This is a moderately high number, related to my PCOS. Thanks to that, I developed moderate OHSS (now downgraded to mild, as of today), which, if you Google it, feels every bit as pleasant as it sounds.

The OHSS is where this all ties into this blog's overall focus.  I had to head in for a very early ultrasound today to assess the free fluid in my abdominal cavity (again: every bit as fun as it sounds), and part of that exam entailed weighing me.

I was expecting to step on the scale and see perhaps an 8% increase over my weight at the baseline appointment for our IVF cycle.  I mean, I haven't been running, I had to stop exercising completely a week ago, and I've been eating more full-fat foods... and just generally eating more of whatever the hell I want, as long as it's healthy-ish.  Or not.  Bison burgers, real ice cream, broccoli sautéed with a bit of butter instead of steamed (and since Saturday bacon and sausage, because one surefire way to keep OHSS from getting worse is to eat plenty of protein and salt).

Instead of an 8% increase, I saw I'd gained .8 lbs, much of which is presumably free fluid in my abdominal cavity.  It was an excellent reality check because while there's no denying my abdomen is distended right now, there's also no denying I was walking around seeing the rest of my body as enlarged, too.  Clearly that's not the case, unless I'm packing air in there, or something?

It's a good reminder that no matter how far I get from disordered eating, some piece of the disorder might always be there.  (Every Harry Potter devotee reading this just said, "Constant vigilance!" to themselves, quietly.)

With any luck we'll be able to do a 5-day transfer on Wednesday, and then we go from there. In the meantime, wish me luck hobbling around like a 90-year-old (at least I can breathe normally again), and not getting too in my head about looking vaguely 4 months pregnant when I'm actually not.

Coming Out: Operation Human Pincushion

You may notice I showed back up after a loooong stretch of time, then disappeared again. (Albeit for a distinctly shorter stretch.)

As previously established, the first absence was due to wanting to get my mental ducks in a row, and then to being unsure how to talk about our struggle with infertility here.

More recently, the second, shorter absence has mostly been related to one thing: how do I come out about IVF on my blog? 

Anyway, I suppose I just came out about IVF on my blog.  (We're doing IVF.  Lovingly nicknamed Operation: Human Pincushion.)

I was prompted to finally put words to digital paper when the Siamese Prince, for the third time this evening, plopped squarely down on my latest injection sites.  Ow.

But I was also goaded into finally writing about this because we're going to a Super Bowl party.  The Super Bowl, we are to understand, takes place around and during the hours of 7-8:00pm EST.  My IVF injections, we are further to understand, take place within this same timeframe. 

I am left with a dilemma.  The party is at my brother-in-law's.  How to peace out gracefully, since I have to get home at a certain time to take my Gonal-F out of the fridge 30 minutes ahead of use, in order to prepare that medicine (along with the others) within the one-hour window for dose delivery?  

For me it's further complicated because this party will be populated by family members who haven't seen me in a while, but who have all seen me very, very thin.  And very thin.  And thin.  And now see me... normal.  

No matter how far I get away from eating disordered behaviors, I'm really unconvinced that this feeling will ever leave me: the dyspeptic feeling that arises when I see someone for the first time in a long time, and it's someone who's commented on my weight in the past ("You're so skinny!").  I can't pretend that if someone notices the weight loss, they don't also notice the weight gain.  And try as I might, I can't yet move myself to not care that people notice.

Did I also mention that IVF meds cause a pretty impressive amount of lower abdominal bloat the more days you take them?  (Sunday is day 10. Average length of use is 8-12 days.)    In other words, you guys, I look vaguely pregnant.  And I don't fit into my pants. 

Here's the skinny.  (Ha.  See what I did there?)  I hesitated to talk about IVF here because I have many Catholic friends and family, and other friends and acquaintances who believe pretty strongly in the "when sperm meets egg" starting point for human life.  

I don't share that viewpoint, but I understand it.  And my guess is that the impulse that gives me agita about people noticing my weight gain is related to the feeling of not wanting my differently-believing friends and family to think poorly of me. 

But there you have it.  We're at IVF, the end of the reproductive road.  I've gained weight since seeing the RE, and people have noticed/will notice.  And I care what people think.  Hi, I'm Cynical Nymph, and I'm an approval-aholic.   

Welcome Back

It's been almost 2 years since I regularly posted.  What's the deal?  What have I been up to?

I decided to step away because I found myself identifying too much as "someone with an eating disorder" even as I tried to recover fully.  At some point I realized that blogging as "someone with an eating disorder" was a self-perpetuating cycle.  Identity is a huge part of many people's eating disorder maintenance, and that was certainly true for me.  "I'm anorexic," or "I'm bulimic," or "I'm a binge eater" becomes as sure an identifier as "I'm from the U.S." or "I'm an Aquarius."

I knew I wanted to get healthier, finally, for good, largely because 2012 was a crap year, and I couldn't take another one like it. 

The bigger reason, though, is that the husband and I realized we both would genuinely like to be parents.   We'd both been in denial about that for a few years, for a variety of reasons.  But in 2013 we started having serious thoughts in that direction, and it proved a fantastic springboard for a real, true recovery for me. 

Maintaining recover hasn't always been easy.  In fact, sometimes it's been really, really hard.  But it's going very well.  Better than I'd ever have thought.

Which brings us to today, or, to begin at the beginning, to January 2014.  At the ripe old age of 19, I went on the Pill largely for its on-label purpose, but also because my periods had never fully regularized, and I thought it couldn't hurt to have something to help my acne.  (Ortho Tri Cyclen had just become the first official BCP for that.)  I stayed on BCP for 12.5 years.  When hypothetical family planning came up at annual exams, I'd ask my gynecologist about my irregular periods before, and she'd wave off any worries with, "That's normal; once you're an adult, and exercising regularly, and eating right, they tend to even out."

I went off the Pill in January 2014 and I waited... and waited.  By April there was nothin' doin'.  I had to find a new gynecologist due to new insurance, and my first meeting with her revolved mostly around my eating disorder history.  She sent me packing with instructions to call in 4 weeks if my period didn't arrive.  By May she prescribed Provera to jump-start my period (and to see if a period would happen at all; she figured my ED had screwed up my estrogen regulation).  Got my period, got told "come back in 6 weeks if nothing else happens." 

I was back there 6 weeks later.  Since about March my skin had been getting worse and worse; I'd started putting some weight on my belly despite no diet changes (that was particularly fun); and I felt like I was constantly pulling more and more bristly, dark hairs out of my face. 

Finally, in late June, I strong-armed my gynecologist into ordering an ultrasound for me. I suspected, after some basic Googling, that I had polycistic ovarian syndrome (PCOS), thought to be one of the most common endocrine disorders in women. 

If you're not familiar with it (I wasn't): PCOS is essentailly a hormone imbalance: your body makes excess androgens such as testosterone.  This in turns leads to ovulatory dysfunction and other reproductive disruption, as well as to fun inflammation-related things like cystic acne and (later) higher heart disease risk.  Jackpot!

"I don't think you have PCOS," my new gynecologist had said at our first appointment in April, solely based on my weight. 

She called me the evening after my June ultrasound, clearly surprised, to tell me that I did, in fact, have polycystic ovaries. 

Isn't being right just the best?

She put me on Clomid (unmonitored -- something I learned is a reeeeeeally bad idea) in July.  By early August we started seeing a reproductive endocrinologist, and are still. 

So NOW that brings us to today. PCOS is diet-sensitive, in that it's directly related to insulin levels in the blood and insulin resistance.  Having to rewire diet and operate from the mindset of not eating certain foods in certain amounts is a tough adjustment for anyone, I imagine, but having an eating disorder history complicates it further.

I debated for several months about whether I'd open up about this here, having known for a good year+ that I wanted to come back to blogging.  After several failed medicated cycles, I find I'm ready to write about it. 

As you can imagine, the focus of this blog is going to shift a bit from what it used to be.  I still plan on covering timely topics related to eating disorders, food, feminism, the portrayal of women in our media, and all the things you're used to seeing here.  I feel I'm ready to do that again from the identity of someone who's recovered, not someone who's in an eating disorder.

But I also plan to focus on the journey of infertility; on what it feels like to be diagnosed with and then try to live around PCOS; and on the intersection of all these themes, old and new.  Because boy howdy, do they ever intersect.

So there you have it.  Welcome back, [hypothetically-still-here] readers.  And welcome back, me.  I've missed you!