This weekend was amazing. I outgrew my favorite jeans, and wore maternity jeans for the first time to our post-holiday holiday party. At said party I chatted with the first-time mother of a 10-month old. We talked symptoms and nurseries, play dates and day care. Her husband took me aside and said bittersweetly, “I don’t know whether this will hurt or help to hear, but I just am so happy for you. You don’t know how many times I’ve asked myself why it is we had A so easily, while the both of you have had to fight so hard. It’s just so unfair, and I couldn’t be more thrilled for you.” This weekend I was rocking zenned out happiness.
Yesterday was not amazing. Yesterday, after weeks of happy absence, the fear came crashing back. The doubt my body could do this, the suspicions that we would ever have a happy ending. Yesterday I talked lab results, waited hours for a doctor’s call-back, hit up those medical journals yet again.
Today? Today I’ve mostly found peace. I’m celebrating a doctor that listens (and makes after-hour calls and last minute appointments). I’m taking my new pills. I’m finding comfort in this familiar discomfort. And, I heard baby But If’s heart beat. No day can be a bad day when that’s a part of it.
It all started on Thursday. A routine prenatal visit. Actually, it was my first visit to the OBs that wasn’t super exciting. It was “routine” in every way possible, and that was new. I yet again peed in a cup (who knew that 4.5 years of practice would come in so handy?), I reviewed my symptoms, I heard the heart beat with the doctor’s doppler. That was about that, and he perfunctorily asked mid-way out the door if I had any final questions. Well…
On the long drive up to his office I’d been debating whether to mention something strange that had been on my mind. You see, it’s not a drive to an appointment if I’m not pre-planning my conversations with the doctor. Anyway, over the past couple of days I’d noticed an itchy rash developing on my hips. And, increasing joint pain. But, you know, 17 weeks pregnant and all, how silly must I be to be concerned about skin changes and joint pain? But the hip thing had me startled. If you’ve been around here for a while, you might remember I’ve mentioned my itchy hips before. And the last time I off-handedly mentioned these ample hips of mine to an MD it got me sent for additional blood work. And, then that blood work came back, well, off. So off that we were forced to stop TTC while the elevated anti-nuclear antibodies (ANA) were investigated by a rheumatologist. A rheumatologist that turned out to be both prone to cancelling appointments and utterly useless. So, that’s how a mundane-looking rash was slowly starting to work me up to a panic. I ultimately decided to go for it… what’s the point of all these appointments if I don’t regularly make myself look like a hypochondriac fool?
The OB, God love him, sat right back down and asked a few more questions. He didn’t blow off my silly rash like, well, the silly rash it looks like. He understood why I’d be concerned since the last time I’d had this constellation of symptoms I was in the midst of an unexplained miscarriage at 9 weeks after seeing several strong heart beats. He reassured me that it was probably nothing, but did say he wanted to draw another ANA level just to “ease my fears.” He was actually more gentle with my emotional state than I actually even needed him to be. I wasn’t really concerned, per se, just curious. He took that curiosity as blinding fear and reassured me as he left that the ANA was a quick test and I should call the following day (Friday) to get the results from the nurse. “There’s no reason for you to worry all weekend!” As he left the room I heard him in the hall telling the nurse to expect my call. 10 points for Dr. T.
Well, the next day I called, but, as so often happens, the reassurances of the receptionist that the nurse would call me back that day were overly optimistic. I didn’t hear anything. But, I also didn’t worry all weekend. I put it out of mind. I mean, I wore maternity pants and talked day care, for Christ’s sake!
Yesterday morning the results posted to my online patient portal. 1:1,250 homogenous pattern. (Again, normal is under 50.) I’m right back where I was after our last miscarriage. I flew mentally right back to that place. To the worry, the incapacitating fear, the dread. The OB opens at 8AM. I called at 8:01.
Turns out my OB was off doing surgery at another hospital all day yesterday. A call-back from the nurse reassured me she’d message him. A second call-back told me he’d replied to her immediately by e-mail and would call me as soon as he could get out of surgery. So, having taken the day off work, I waited, ate chocolate, and watched Bomb Girls. By noon I still hadn’t heard back, so I wrote a message to my former reproductive immunologist. He replied back quickly with a few suggestions for additional testing (anti-XA to make sure my Lovenox dose was correct and another anti-phospholipid antibodies test to make sure I was still negative), but reminded me that, at his practice, he doesn’t even seen anyone past the first trimester specifically because he doesn’t believe immune/autoimmune issues matter much once the placenta has taken over supporting the pregnancy. I mean, of course they matter, but not in the sense that they spell immediate doom to the pregnancy. That helped to calm me immeasurably.
At 6:30pm the phone rang. It was the OB. He apologized for being stuck in surgery all day, and immediately got down to business. I needed steroids, and I needed them now. 10mg of methylprednisolone for 7 days, followed by 5mg from the next 7, then a re-check of the ANA and my complement levels in 2 weeks time. A flare of some sort is happening, and while it’s scary, he reassured me that 1. we caught it early, 2. this is not all that uncommon in someone with a complex autoimmune history, and 3. we’re out of the scary first trimester and have no reason to believe there is anything wrong with the baby just because my body is going haywire. Luckily, the placenta is a fairly good nanny and keeps out most of the nasties my body seems prone to producing. Then he said, “If you were my wife, well, I know you’d want the reassurance of hearing the heart beat again soon. Can you come in tomorrow?” I didn’t have the heart to tell him I’d been cheating on him with my home doppler, so that, combined with the fact that I NEVER pass up the opportunity for an appointment (and to pee in a cup), I said, “Yes, absolutely!”
Our appointment today went well. I heard that thumping heart again, and he answered many of my questions. We’re treating it as if I now have lupus and am experiencing a lupus flare, even though no rheumatologist (or any doctor for that matter) has been confident enough in my symptoms and lab work to label me lupus. Lupus or no lupus, the treatment of an apparent immune flare is the same — short course steroids, followed by careful monitoring of my ANA and complement levels, as well as keeping a close eye on the littlest But IF.
It’s strange to leave an appointment where so much of the conversation was dominated by discussions of my new heightened risk of pre-eclampsia, pre-term labor, intrauterine growth retardation, and warnings to watch myself closely for other (lupus?) flare symptoms, with such a sense of ease and calm. The drive for answers has been one of the few things that has kept me going on this sometimes unbearable journey to biological parenthood, when other options could have been investigated. My gut told me that being diagnosed with spinal arthritis in my early 20s wasn’t right, that loosing 3 pregnancies (including a strong looking 9 weeker) didn’t add up, that an ANA that high surely couldn’t be nothing, that frequent fatigue and body aches that weren’t resolved by the best thyroid care I could muster made no sense. Whether its lupus or not I really couldn’t care at this point, but seeing “nonspecific connective tissue disorder” at the top of my discharge paperwork this morning was a huge moment to me. I’ve stopped believing that we’ll ever have all the answers for why we’ve had to go through what we’ve gone through, and have accepted that, no matter our need for answers, that for so many of us the answers will remain “It could have been” or even “We’ll never know.” But having that label on that paper, having a doctor take my silly rash seriously, having a physician look me in the eye and thank me for bringing my concerns to him because, “It’s great we caught this so early,” that makes all the difference in the world.
I’m trying not to think to much about the future, to be honest, but am just focusing on the present. Today we found some more puzzle pieces that were wedged in between the couch cushions. Who knows if we’ll have the time, energy, or desire to finish the puzzle, but finding those pieces is a necessary first step.
Now, would I have given anything to avoid all this and continue on in my blissful, rash-free, non-lupusy, pregnant happy state for the next 6 months? Fuck. Yes. But, if this had to happen, I’m glad this is how it all went down. I’m glad that from 4.5 years of fighting, learning my body, and ceasing to give a crap what others think of me, I’ve come out the other side stronger and better able to help myself and ask others for help when help is needed. I’m glad I’ve learned that sometimes and itch is not just an itch.