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 saut√©ed 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.   


Discomfort as a Skill

I've become more comfortable with being uncomfortable.  
I stumbled upon that realization the other week when thinking about why this time took, of all my attempts at real recovery, and not the other times. 
Last autumn I started working on assertiveness.  I bought a workbook, like a middle schooler.  This was initially more for my professional persona than anything else, but I noticed the benefits in other areas of my life, too.  
When I was being more assertive, it was easier for me to identify feelings instead of just reacting to them.  It's not surprising, then, that I found myself able to be less and less in my eating disorder as it stopped having reactions to immediately protect me against. 
This was all incredibly uncomfortable.  That discomfort has started to pass after many moons, though I'm not sure it'll ever be gone entirely.  
It's been supplanted by a different kind of discomfort as I've slowly gained weight since the longtime birth control fully worked itself out of my system in the spring.
In PCOS, birth control essentially protects the ovaries and balance the amounts of estrogen and androgens they produce.  When the body has less free testosterone, insulin levels stay steadier, and insulin resistance doesn't develop (at least with me).
Off birth control, that protection disappears and the ovaries (and pituitary and hypothalamus) go into overdrive producing androgens. The more androgens in your system, the more insulin your body wants to produce.  The more insulin in your system, the more androgens, etc., etc.  
Some of the super awesome signposts of high androgen levels include male pattern hair thinning (such as at the corners of the forehead), oily skin and acne, and the growth of dark, bristly hairs in places you'd prefer they not appear.  (I want electrolysis if I'm not knocked up by Christmas.  NYC medi-spa recommendations welcome.)
Those symptoms aren't fun, but they're not so, so terrible.  (Okay, if I'm being honest, the acne is really depressing.)
What's making me so entirely uncomfortable is the belly fat that has very gradually grown since about April.  That's an insulin thing, and it means I should really get my butt to a doctor to have a fasting glucose test to see if I need to be on the insulin regulation drug Metformin.  
In the meantime, though, talk about the major fear of most eating disordered people coming to fruition:  weight gain, not due to out of control diet, right on your abdomen.   It is so exquisitely uncomfortable*.  
But being that I have finally learned how to be uncomfortable, I finally have the ability to just sit with that feeling of I hate this so much when it crops up (which is still several times a day).   
About a month ago, I surprised myself by realizing that going into eating disordered behaviors (whether restricting or purging or whatever) doesn't really occur to me anymore.  At some point I took it off the table. 
Which leaves me here, with a belly growing for upsetting reasons (if the belly fat weren't upsetting enough all on its own), and the ability to sit with how much I hate it.   That may sound incredibly depressing, but I can assure you, it's liberating.  (If uncomfortable.)
Next on the docket: finding a PCP's office who actually understand whether or not they're in my HMO network, because apparently no doctor's office anywhere has fully figured out how to work with the PPACA plans offered on the state exchanges.  But that is a whoooole other post

*"But CN, when you get pregnant your belly's going to grow anyway."  Yes, obviously.  But, you know, that'll be a fetus, not just adipose tissue.


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!