What one year of recurrent pregnancy loss has taught me

A few weeks ago, my husband and I celebrated our One-Year Wedding Anniversary. The date also officially marked our One-Year Trying To Get Pregnant Anniversary. Because when you get married at age 33 and 34, you gotta get right down to business.

We had a dinner reservation at a fancy restaurant, where we sometimes go to celebrate fancy occasions with fancy food and fancy drinks. But before we went to said fancy dinner, we sat down on the couch and looked through our wedding album.

We looked at every moment of our wedding day, from the shots of me needing 5 people to help me get into my dress, to our first kiss as a married couple, to the photos of my brother-in-law laughing so hard he started weeping during my sister’s toast. It was the perfect day, and we relived it all.

And I realized that the person I was that day in the white dress is so very different than the person I am now. That glowing, beaming girl in all in those photos wasn’t just tanner, slightly slimmer and more made up than the me that exists today. That girl was incredibly naïve.

That girl thought this next part would be easy. She figured having a baby was as simple as throwing out the birth control. She had the next 10 years planned out. That girl had no idea the year that awaited her.

It’s been a doozey of a year. And it has changed me. But in a way that’s made me wiser than I ever was before. In fact, here are 5 life lessons I’ve learned from my year’s battle with recurrent pregnancy loss. 

Stop planning everything

I’ve always been the kind of person who makes things happen. I decide I want something, and then I work and do whatever it takes to get it. So of course, when it was time for us to have a kid, my husband and I bought a big 5-bedroom house in the burbs and I found a family-friendly 9-to-5 job nearby. Only one part of the master plan failed. The kid part.

The whole, “But we had a plan” thing is I think what has anguished me most this past year. It’s made me livid with the universe, my fists-raised upward and shaking wildly, “how dare you mess with our plan!” As if the universe gives two shits about our plan.

No, the universe just laughs and says “If it weren’t for my randomness, you’d always be bored.” And I know she’s right, that sassy wonderful insane bitch.

Everyone really is fighting a battle

I’ve always loved the quote, “Be kind, for everyone you meet is fighting a battle you know nothing about.” But I don’t think I really got it until this past year. Not until I was secretly bleeding out a pregnancy while being bullied by a client on a conference call. Or until I was enduring what I feared to be miscarriage cramps while an impatient woman huffed and puffed behind me at the pharmacy counter at CVS.

This year has made me rethink all my daily interactions. It’s made me catch myself when I start to grow agitated with someone and slow my words when I begin to make a snide remark. Because if I could have been secretly dealing with what I was secretly dealing with, what might others be dealing with that I know absolutely nothing about.

You are your only advocate

Before this year, I always just figured that if there was ever something physically wrong with me, a doctor would find it. As long as I had my yearly checkups, did my annual blood draw and reported any noticeable changes, they’d tell me if there was something I needed to worry about. Because they’re doctors, and they know that kind of stuff.

But doctors are also people with lots of patients, lots to keep track of, and secret battles of their own. And they don’t know you like you know you. So if you’re unsure about their treatment plan, speak up. If you want them to take a second look, say so. If you want more or different tests done, demand it. Stand up for your health. The worst thing they can say is “Get another doctor.” Which, by the way, is never a bad idea anyway.

Never put stock in a plastic stick

I mean, seriously. We live in an age where people can hold international meetings on their watches, and I’m basing my whole future on a plastic stick with two lines? A stick I just peed all over? Contrary to my entire life’s beliefs, pregnancy tests are not magic fortune tellers. Most times they work. But a lot of times they don’t. So when in doubt, get a beta.

Enjoy this day.

Did I mention I’m a planner? To the extreme. And part of being a planner is constantly looking forward to the next mile marker, the next exit, the next big thing down the road. And when that next thing is suddenly so very unattainable, you’re left looking down a road that now seems empty, long and desolate – just waiting for the one thing in the distance that would make it not so desolate.

But what you don’t see is that there are things all around you that would make the road less desolate, if only you would just look at them. Look at them and really enjoy them. A cup of coffee. A night with friends. A new lunch spot. A co-worker who brought cookies.

Look at these things. Enjoy this day.

B.O. for a baby

Let’s play a game of Would You Rather. Except this time, there won’t be alcohol or the possibility of getting flashed by your chemistry lab partner. Ready? Would you rather be free from the grips of B.O. for the rest of your life, or have a baby? Would you rather be called Smelly Gym Sock Girl or That One Childless Woman Over There?

Last week, I started reading the book “It All Starts With The Egg” which talks about the science of egg quality and gives ideas for things you can do to boost it. So if you’re like me and have a big fat 0.0something when it comes to egg quality (AMH), it’s a book you probably rushed out and grabbed as soon as you heard about it. I did, and I started reading it like the bible. Thou shalt not eat non-organic fruits and vegetables.

In addition to outlining nutrition guidelines and beneficial supplements, the book brings to light all the toxins in the world around us that could be hurting our egg quality.

A year ago when we started trying, I made a conscious effort to rid my life of all BPA. So long, big plastic cups that hold a ton of water. Check ya later, fake Tupperware that’s now stained orange. But this book opened my eyes to other toxins in my life that I had never thought about.

For instance, I never considered that my kitchen coffee maker, which I drink from every morning (no more than 6oz though, thank you) is also likely overrun with BPAs that are slowly killing me and my eggs one 6 ounce cup at a time. Immediately, I quit coffee cold turkey.

But then there’s the phthalates. I didn’t know about the phthalates. I also had no idea how to pronounce the word phthalates. But I know now they’re bad. Oh are they bad. And they’re in everything. Shampoos, conditioners, body wash, lotions, perfumes, deodorant, anything with “fragrance” in the ingredients list. Holy shit, the phthalates! It seems these things are also leeching into my bloodstream and ruining my eggs. Forever.

So I immediately ran to Whole Foods, and got new body wash, new lotion, and new deodorant. All with all-natural ingredients and absolutely no fragrance. Yeah, take that you phthalates.

So here I am, thinking that I’ve mastered this whole egg quality thing. I must be so phthalate-BPA-And-other-random-toxin free that my eggs are going to become super eggs, like mini Arnold Schwarzeneggers all huddled up in my ovaries. Yeah, I think to myself, I got this now.

Until I raise my arms to stretch and realize that I have the worst case of Lady B.O. I have ever smelled. Damn, I miss my phthalates.

I am a walking home inspection report

Anyone who has ever bought a home knows all about the dreaded home inspection process. You have found this wonderful home that’s not just perfect for you, it’s perfect for your future you, your future mini yous, and the dogs and cats and barbeques you just know you’ll all have together one day in the yard that will surely be 72 and sunny all year round.

Amazingly, you and the sellers even agree on a sales price and terms of the sale. And so aside from the whole mortgage thing the only big step left is the home inspection. Yeah, you figure there’s likely one or two things wrong with the house – a wall that needs to be reinforced or a little roof damage here and there. But these are things that can be fixed relatively easily.

And then, you get the home inspection report. It’s 50 pages. Filled with problem upon problem upon problem involving things you don’t understand, things you can’t pronounce, and things you never even knew were supposed to be part of a house. This one perfect house is so very secretly riddled with problems, you wonder how on earth anyone has ever even managed to buy a house before.

Well, after my long-awaited appointment with Dr. Kwak-Kim in Chicago, that home inspection report is me.

To back up a bit, I had been awaiting my appointment in Chicago for decades (9 weeks). So when it finally arrived, I was so excited I didn’t even think to worry about the things she would find. I was like a kid on Christmas. A kid who just couldn’t wait to have a transvaginal sonogram while having 22 vials of blood drawn from their arm. It was magical.

The 4-hour appointment involved a series of high tech ultrasounds measuring things like blood flow and uterine lining, collection of blood for 27 different lab tests, a thyroid ultrasound, a complete physical examination and a one-hour consultation with Dr. Kwak-Kim.

The majority of the findings would be revealed to us three weeks later, during a follow-up call with Dr. KK. But on the day of the exam, she open my eyes to a couple of things. One, I have PCOS. This shocked the hell out of me seeing as I’ve been ovulating monthly and neither my RE or his NP had found cysts in earlier ultrasounds. Second, I need to gain weight. What I thought was “healthy” is apparently unhealthy for pregnancy, since a healthy BMI is 19 – 25 and my BMI is 18. Third, balancing all the above is going to be a challenge. I’ll need to limit my carbs to help manage the PCOS and somehow gain 5-10 lbs in the process.

That was just the start. Three weeks later, we had our phone consult with Dr. KK, during which all the hidden cracks in the foundation and wiring hazards were revealed. In additions to PCOS, I have:

Hypothyroidism*

Anti-Nuclear antibodies

Anti-phospholipid antibodies*

Natural Killer Cells with high toxicity

Elevated TH1 Helper Cells (pro-inflammatory)

Three gene mutations that cause blood clotting (Factor I, Factor XIII, PAI1)

Elevated homocysteine levels

*These two tests were run previously by my RE and deemed “normal”

So right now, I am on Levothyroxin for my thyroid, Metformin for PCOS, Baby Aspirin and Vitamin E supplements for blood clotting, Folgard because of my homocysteine levels, And vitamin D3 for…well I’m not sure, exactly but why not. That’s in addition to all the supplements The Dragon Lady has me on. I have become a walking pill box.

The plan is that I’ll continue on these meds for 4 weeks, then have another round of blood work. If it looks like the meds and dosing are working, I’ll then add daily heparin injections for blood clotting, Prednisone to lessen the inflammation and IVIG infusions during a planned natural conception cycle.

The kicker? Like most people’s insurance, mine will not cover IVIG. And at more than two thousand dollars a pop, it would need to be administered before ovulation and then every two weeks after a positive pregnancy test for the length of a pregnancy. In addition to the logistics of taking at least 3 hours off work every two weeks to secretly receive infusions, the reality of actually paying out of pocket for IVIG seems unfathomable. Then I start wondering, what happens if it takes 3 months of infusions before we actually even get pregnant?

We’re just not sure IVIG is going to be a realistic option for us.

And it makes me feel like the home inspector just told us the new roof that’s needed is going to cost more than the house itself. Do we do everything else to patch it up as best we can and hope it holds all the same?