People started to ask me when I was going to have kids while I was still on my honeymoon. Three and a half years later, the interest persists.
“What if I say ‘We’ll start having kids as soon as Tom starts making as much money as me?’” I asked my friends.
“That’s TMI, Kat, and not very nice to Tom, and anyway, you only made more money than him for about six months,” my friends said.
I had to get some of this indignation out of my system. So I started writing on my Facebook wall in the voice of a character I called “The Empty Uterus.” After Thanksgiving, The Empty Uterus posted:
“Nope, just ate a really big piece of turkey and am still loading up on leftovers. Bloated, but not pregnant.”
The Empty Uterus feigned surprise when presented with common knowledge:
“You’re kidding. It’s harder to have kids after you turn 35? But my 35th birthday is less than 9 months away!”
“Still empty,” was my favorite Empty Uterus aside.
What no one knew was that in the midst of all this joking, there was a very specific plan underway for getting a baby into that empty uterus. But because I have RA, like all major life decisions, this plan had multiple steps and contingency plans.
First, I had to test run how my body would react to going off some of the medication I was taking labeled “Category X,” which is not safe for a fetus. One such medication is methotrexate. I’d been on it for about 15 years. Not only is methotrexate Category X, but at high dosages, it’s used to induce abortion.
“Six months is safest to make sure methotrexate is out of your system,” one doctor told me.
“Three months is fine!” said doctor two.
I decided to wait ’til methotrexate had been out of my system for six months before I went any further. January was my first methotrexate-free month. At first I felt no different. Then, around February, I flared, and had to use a cane for a few weeks. But otherwise the methotrexate elimination went well. I didn’t miss it.
At the same time I was going off methotrexate, I was getting pressured to stop taking Plaquenil. My opthalmologist was concerned that I’d taken it for so long that the accumulation of Plaquenil in my system could trigger Plaquenil-induced blindness. My rheumatologist did not want me off Plaquenil, so the compromise was to half my dosage. Then the weather got warmer, and I started spending some time outdoors. Around the same time I noticed strange brown splotches on my forehead and nose. The one thing I’ve had going for me since adolescence is relatively good skin. All of a sudden I looked like I’d faked-and-baked for too long in a Myrtle Beach strip mall.
“This is what we call ‘The Mask of Pregnancy,’” the dermatologist told me.
“No, you’re not pregnant, it’s just similar to the skin markings we see on women who are pregnant. Yours is from Plaquenil. It’s making you photosensitive.”
So no more Plaquenil.
By June, six months into my getting-ready-to-try phase, I was off Plaquenil and methotrexate, but still on Remicade and prednisone. I was swimming and writing. Life was going pretty well. I was feeling good, for once.
Then I crashed. On top of the usual (swollen knees, perma-bent left elbow), my hips were aching. I couldn’t climb stairs normally—I was pulling myself up them. I was lethargic and exhausted. I went on a Medrol pack and it worked for about a week. The day after the pills ran out, my knees swelled back up again. And I packed on about ten pounds, which meant that once school started in August, most of my clothes didn’t fit.
This was my pregnancy dry run. It was not going well.
I should by now never be surprised by anything RA-related, but for years, my rheumatologists have given me vague assurances that pregnancy would never be a problem. That my RA would not rob me of this experience. Year after year, no doctor could think of any reason why I shouldn’t conceive. No one predicted the kind of downward spiral I was experiencing. And I wasn’t even pregnant yet.
The thing is, conception is one thing, and that’s all my doctors were focused on. Maybe that’s what they thought I cared about. But pregnancy, for me, is about much more than fertility. It may mean incapacitation due to medication changes—I might flare before, during, and if I choose to breastfeed, after, a baby’s arrival. Independent of the medication changes, I could have pregnancy-induced flares.
In July, I requested a bone density scan to see how much worse my hips had gotten in the past 18 months. It revealed that my right hip was now in the throes of osteoporosis, and that my left hip, now osteoponic, was on its way to the same fate, I made an appointment with a high risk OB/GYN.
My meeting with this doctor was somber from the start.
First things first. Without methotrexate, I was flaring, and Remicade and prednisone weren’t doing much to help. This was not a good sign—my body was telling me that it needed the very medication that I had to stay off while pregnant.
“And you’re probably going to flare even worse when you’re pregnant,” he told me.
About that Remicade. The data on Remicade and pregnancy is sketchy with respect to taking it during the second and third trimester. Many women have taken it during their first trimesters, and it appears that their babies all turned out fine. But this suggests to me that anyone who has taken Remicade took it only before they knew they were pregnant, and then stopped. This gave me pause. But what if I did stayed on Remicade?
“The Remicade might suppress the baby’s immune system,” the doctor said.
The bone density issue was my greatest concern. At 19, I broke a bone in my left leg while catching a rebound during an easygoing game of pickup basketball that pitted me against two girls who hovered around 5’, one of whom was wearing her shower flip-flops. This was not high-risk behavior, and it took me six months to recover, much longer than expected. At 29, a jumping jack during a session with a trainer ended with a quiet crack—a stress fracture right above my left ankle, that healed, sort of, but still aches when it rains. I’ve been on prednisone for nearly 24 years, and cannot wean off. My bone density will only worsen with time. The stress on my hips could trigger a fracture during the pregnancy. Or after. Or maybe even during birth.
Even ignoring some of the above, there was still the unavoidable fact that my pregnancy would be high risk. Something else would go wrong—a third trimester miscarriage or even a stillbirth.
“So, this is what I need to know,” I told the doctor, who had neatly-parted white hair and seemed actually willing to give me concrete information.
“What do you recommend?”
He sighed. “You want me to tell you if you should try to get pregnant?”
“Yes,” I nodded.
“I can’t. That all depends on your tolerance for risk. You have to make up your own mind. Some women will do anything to have a baby. None of this would stop them. But most women haven’t been through what you have.”
I nodded some more.
“Let me put it this way, would you fly into Jerusalem tomorrow?”
The week we visited this doctor, the news was filled with stories of air strikes. Most flights in and out of Israeli airports were grounded.
“Well, no, of course not,” I said.
“There you have it,” the doctor concluded. He wanted me to think about surrogacy.
“Well, I don’t think I want to pass on my crap genes to anyone else,” I told him. “Adoption’s fine,” I said.
“I have three adopted daughters,” the doctor confessed. “We had fertility issues.”
I held it together until we reached the elevator bank. Then I broke down in tears. For the next few weeks, I’d think I was ok, and then I’d wake up in the middle of the night, remember what I’d learned, and cry some more. I felt like I’d let my husband down—we’d gotten married for many reasons, including that we wanted to have children together. His genes are worth passing on.
But for now, we’re not going to risk it. In the last five years we’ve been through two glaucoma surgeries, two ER visits, a pinched nerve, countless knee aspirations and injections, and never ending physical therapy. Each of these medical events was supposed to be simple but ended up with unpredictable complications and prolonged recovery. Even without a baby, I’m an unhealthy mess. I’m not ready to embark on another disaster.
We’re looking into adoption. And fighting desperately to get me out of this flare. The flare that I walked right into, like an idiot, to see what my body’s reaction to getting ready for pregnancy would look like.
I was supposed to be pregnant by now.
I cry less these days. But I do have the lingering memory of a dream in which I saw a young girl, about five, standing in a field, trying to decide if she should walk through an open wooden gate, the kind with a metal latch that swings open. Her hair was blonde and cut into a chin-skimming bob—just like mine was at that age. In my dream she smiled when she saw me. She was my daughter. I knew it. I knew her name, too. Jane.
I haven’t lost anyone real. I haven’t lost anyone I’ve held in my arms or carried in my belly. But I lost something. Maybe it’s just the promise of that dream, which I mourn in my own way–quietly, as I muffle my nighttime sobs. I mourn the one I’ll never know.
Please note that the content of this post reflects the personal experience of the blogger and does not constitute medical advice. Success or failure with a drug, a personal fitness program, diet, or psychological outlook is individual. Readers cannot assume that they can replicate any success or failure they read about in a blog. Always seek the advice of a physician or other qualified health provider with any questions you may have regarding your medical condition or medications.