MTHFR

Don’t the initials MTHFR look like they stand for something? Like maybe motherfucker?

After the battery of RPL tests, I’m amazed I have any blood left at all. I would estimate that I’ve had a total of 40+ tubes of blood drawn in the past three weeks. I had blood drawn twice for the thrombophilia tests, because the first lab screwed up the processing of it. Seriously? It’s not like I just want to give away my blood for fun!

Anyway, after all of that, I finally got a call from Dr. D (the new RE) today and the one thing they found was the MTHFR gene defect (I don’t have any other details about it, because she didn’t offer them and I didn’t know to ask). My doctor said not to lose any sleep over it; it’s pretty unlikely, she thinks, that this is related to the miscarriages I’ve had. She called in a prescription for Folgard and we have another appointment with her on Feb. 10 to talk about the plan for moving forward, but she seemed largely unconcerned. Not surprisingly, the Internet disagrees. Google thinks I should worry. And not only that, but Google also tells me that anxiety and depression are symptoms of this genetic defect; this is definitely consistent with my experience.

What now? I suppose we’ll learn more when we actually meet with Dr. D again, but right now I’m feeling like everything is uncertain and I am so tired of uncertainty. MTHFR may or may not be related to my RPL. I may or may not be at increased risk for future pregnancy losses. I may or may not have PCOS. I may or may not have a really hard time getting pregnant again in the first place.

I really am trying to keep all of this in perspective. Miscarriage is horrible. But other things are more horrible. Like losses later in a pregnancy. Or fatal illnesses. Or war. But sometimes I feel like I’m walking around with a blindfold on; there are all these (bad?) things we’re headed for in the future and I can’t see them, but I know they’re there.

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Goodbye (and Fuck You), 2011. Hello, 2012…..

2000/2001 (my years were school years back then) wasn’t a great year. Both my grandfathers died. I was incorrectly diagnosed with a brain tumor (it was actually an imperfection in the film). I was correctly diagnosed with both Chiari Malformation and Compensated Hydrocephalus, neither of which resulted in any medical problems or treatment, but I spent a year in uncertainty following the diagnoses.

That’s the last really bad year I can remember. I’ve had not-so-hot years, blah years, treading water years, but no really bad years. Until 2011. I know many of you spent worse 2011s than I did and I have nothing but compassion for the stories I’ve read on your blogs.

For me (for now), 2011 wins my worst year award:

  • May/June: My grandma goes into the hospital with excrutiating back pain and bounces between the hospital and rehab for 6 weeks
  • June 15: First ever positive pregnancy test after more than a year of trying
  • July 20: Miscarriage diagnosed
  • July 21/22: Miscarriage via two rounds of Misoprostal
  • August 14: J moves to New York for school and we start living apart during the week
  • August 29: Roommate (my first in almost 10 years) moves in
  • September 2: My mom has double hip replacement surgery followed by two blood transfusions and a week of residential physical therapy
  • October 28: Positive pregnancy test after just one month of trying
  • November 21: Roommate’s boyfriend arrives
  • December 3: Miscarriage diagnosed in ER
  • December 6/7: Miscarry naturally at home
  • December 14: Roommate’s boyfriend leaves
  • December 15: Roommate moves out

Unsurprisingly, then, I was anxious for a new year. I want 2012 to be our year, finally. I desperately want a third pregnancy and this time, one that lasts. But 2011 taught me that the control isn’t mine. It doesn’t matter how badly I want this; it will either happen or it won’t, all on its own.

So as a compulsive list-maker and goal-setter, I haven’t known what to do with these first few days of 2012. How do I start fresh with something over which I have no control? No matter how carefully I lay out my 2012 goals, there is nothing I can do to bring us closer to them. After eagerly anticipating this new year, I haven’t done much with it yet. I’ve been reading a lot, trying to enjoy our month-long stay in this tiny cottage overlooking the lake, beginning to wrap up my last month in my current job.

We have our first appointment with a new RE on January 13 (Friday, by the way…. I refuse to read into that). We’re hoping to demand a battery of tests that doctors have been refusing us thus far in favor of just telling us to keep trying. I want as much testing as possible before we just try again; if there is something identifiable causing me to miscarry, I need to know what it is and determine whether there’s anything we can do about it. And if not, then we’ll steel ourselves and try again.

So hello, 2012. No exclamation points. No huge expectations. I’ll just try to step into you quietly and with hope.

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The Way I Do It

I would be seven months pregnant now with my first pregnancy. Or almost 11 weeks with my second. I was thinking about that in the shower last night – how different things could be right now (but aren’t). So I resign myself to more (seemingly endless) waiting. I’m impatient and angry and really, really sad, but in the real world, where the days keep unfolding one after another whether I want them to or not, there’s not much I can do about any of it. So as the world (my job, my parents, and even J, despite the fact that he is most certainly traveling this path of grief and hope with me) makes it clear that I have no choice but to pick up the pieces and keep going (or at least fake it), I’ve been thinking about how I do that. I did it after the last miscarriage and here I am, trying to do it again.

Though at the moment I’m moving forward with anything but grace, I’ve been thinking a lot about an email my mom wrote me after the first miscarriage. It was a long message, filled with everything from empathy to humor to inspiration, but it’s this thought of hers that keeps coming back to me: “I have come to the conclusion that life is mainly one long struggle for survival and what makes us human is the grace with which we navigate the paths we are given to travel.” This is the sort of view that I’m striving for. At the moment, I’m hopelessly far from achieving it, but at least it’s out there.

Meanwhile, in the messy day-to-day, I have ways of coping. I realize that others in my situation do this very differently and obviously there’s no right answer. We all grieve differently and find different ways to keeping going; this is just the way I do it (or rather some of the ways):

  • I quit Facebook. I actually did this before I got pregnant the first time, because (among a million other good reasons) my “newsfeed” had become a long list of pregnancy announcements and baby pictures. We had been trying for two years at that point and I couldn’t take it. I’m glad to say I’ve stayed away ever since.
  • I didn’t let myself believe the second pregnancy would work out
  • I threw out the “Your Pregnancy, Blah, Blah” book the doctor gave me, but kept the ultrasound pictures from both pregnancies.
  • We didn’t name the fetuses and I don’t have any regrets about this. They both stopped developing around 8 weeks and while I do have quite a lot of reverence for the fact that I was (however briefly) carrying the beginnings of two lives, they weren’t yet individuals to me.
  • We read books aloud, watch lots of tv-via-Netflix, and keep a bottle of wine nearby; distraction is key.
  • I accept that some amount of denial is inevitable.
  • I also accept that the sadness goes on longer than anyone around me expects it to.
  • I try to walk the often elusive line between hope for the future and an acceptance of the bleakness that is the current moment.
  • I tell some people what we’re going through, but keep it from others.
  • When I’m angry, I yell at J because he’s always here to take it, but I also love him more now than I ever have.
  • I’m not sending holiday cards or gifts this year and I’m not feeling guilty.
  • We’re simultaneously looking into adoption and options for future pregnancies.
  • I started this blog, but so far I haven’t shared it with anyone who knows me in real life, except J.

Your list probably looks different. This is just mine and as much as anything could work for me right now, it does.

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The First Time

The first time I was pregnant, I thought I was being cautious. After all, we had been trying to get pregnant for a year and a half, had been given a few reasons to worry (infertility, PCOS, less than ideal sperm), had been to an RE, and were using Clomid. So when I saw that positive pregnancy test after so many months of waiting, I wanted to feel pure joy/excitement/optimism, but I knew I should be cautious instead. We knew about things not working out the way we planned; why should this pregnancy be any different? I decided we couldn’t tell anyone but my parents until after the first trimester. I avoided thinking about nurseries or baby clothes. When I never experienced morning sickness, I worried a lot, despite the fact that my doctor said that could be perfectly normal. Even though we saw a heartbeat at six weeks and the doctor was confident, I was just as nervous for our second (nine week) ultrasound appointment. And rightly so, because that’s when we heard those horrible words: “I’m not finding a heartbeat. It looks like you’re having a miscarriage.” And then our world fell apart, right there, with me lying on that table. I couldn’t breathe. I remember so clearly the way my mind struggled in those first moments to even conceive of the fact that we weren’t having a baby. I kept thinking “wait, no – this cannot be happening – they just need to look more carefully,” as if I could just think hard enough to change the horrible reality that was unfolding in front of us.

In the aftermath of that first miscarriage, it became clear to me that as cautious as I thought I was being during my short (but really long) five weeks of knowing I was pregnant, I wasn’t being cautious at all. I knitted things, for one: a little green baby bonnet with a button that looks like an orange (a favorite from my mom’s button jar since I was practically in kindergarten), a mobile with little bunnies in striped shirts….. I even started a baby blanket. What was I thinking? We talked about names. We engaged in those “this time next year….” conversations. In short? We were not being cautious. I thought we were, but I was wrong. Actually, that was the most innocent, joyful, optimistic pregnancy I would ever have. Until (of course) it wasn’t.

So when we started trying again afterward and I (completely shockingly given our history of not being able to get pregnant for nearly two years at a time) got pregnant that first month, we were truly cautious. I didn’t knit, we didn’t talk names, we told people (so that we’d have prearranged support if we had another miscarriage), and every statement we made about the future we wanted so badly began “If we really get a baby at the end of this….” or “If this all works out…..” or “Assuming this doesn’t just end in another miscarriage….” People we talked to thought we were being unnecessarily negative, but I knew we were just being cautious. When we saw the heartbeat at 6 weeks, I did my best to live in and enjoy that moment, but I didn’t allow it to lend any hope to the future. And when, after nearly three hours of waiting in the emergency room, it was confirmed that I was having a second miscarriage, my world didn’t fall apart. Don’t get me wrong – in the moment when the emergency room doctor confirmed what I already suspected from observing the ultrasound tech’s face as she searched the screen, I felt myself sink slowly into the deepest sadness I’ve ever experienced and I am not far removed from that place now. In most respects, a second miscarriage is very much worse than a first. After a first miscarriage, everyone tells you that you’re no more likely to have a second than any random woman is to have a miscarriage. After a second miscarriage, they don’t say much. My world, however, didn’t fall apart, because as awful as it was to hear those words, it was familiar. I knew what to expect physically, emotionally, practically, spiritually. I knew about stepping into that dark place. And about the loss of hope. About the blank slate that my life would become again, at least for a while. I don’t want to know those things, but I will never not know them again.

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