This is a multi-part post. You can read the first part here.
The first time I had a needle inserted into my spine, I had been in labor for 20 hours and had already dilated almost to a 9. I had been in hard labor for several hours, and had the sustainable sensation that my body was breaking apart, my pelvis shattering into a thousand pieces. I hadn’t had a birth plan, and I had been afraid to order the epidural, fearful that somehow I would be less of a woman and mother if I let science and modern medicine alleviate the excruciating pain of childbirth. I have no recollection of the pain of that needle entering my spine because only a few inches below, my firstborn was trying to headbutt his way out of my body and the pain signals that sends to the brain are deafening.
I wrote in my last post about the grueling experience I had with anxiety over the course of only a few weeks this past spring. In the midst of all that, I had also begun seeing a new neurologist who decided I had fibromyalgia, and ordered another round of testing to rule out MS. 2017 marks my tenth year of dealing with neurologists, having strange autoimmune and neurological/neuromuscular symptoms, and being subjected to all sorts of tests. This neurologist thought it prudent to order a spinal tap, which was the one potentially conclusive test we had not yet conducted over the years.
The first time I went in for the spinal tap, the technician asked if there was any chance of pregnancy. My then-fiance and I exchanged a glance, and I cracked a poorly-timed joke about how there’s always a chance, amirite? *wink wink* and suddenly I was having my blood drawn for a pregnancy test and being told they could not conduct the spinal test that day because if I was pregnant, it could harm the fetus. It was a frustrating experience, having to reschedule the whole thing, since we had specifically planned for me to be in bed for 24-48 hours following the test to avoid contracting a spinal headache. You are instructed to lay as flat as possible for a day or two, and to especially not lift anything, because apparently having fluid removed from your spine is kind of a BFD, and strenuous activity can cause a continued leakage of spinal fluid from the tiny hole created by the needle insertion.
The second time I went in for the test, the physician assistant who would be performing the spinal tap dropped his pen on the floor twice while he explained to us how the procedure would be conducted. We were skeptical of his dexterity, and understandably nervous about him sticking a needle into my spine. But we had already been forced to reschedule once, and doing it a second time seemed like a real hassle. So, I laid on my side on the x-ray table and trusted that Sir Butterfingers wasn’t going to damage me for life.
The test was predictably painful. The recovery was predictably boring and obnoxious. I laid in our guest room watching Netflix, scrolling the internet, and eating almost constantly because I was on Olanzipine at the time, which made me a bottomless pit. Well. Not bottomless. Because all that shit that I ate did not simply fall out; it collected on my thighs, my ass, my gut, my boobs, my face, and my upper arms.
The day that everything came to a head with my anxiety was Friday, May 12, 2017. I had spoken to my boss the night before about possibly needing a leave of absence. And that day, like every day that week, had been much worse than the last. I had spoken to multiple inpatient psychiatric facilities, and made a tentative plan with the one a few blocks from our house. My husband and I had agreed that the best thing for me to do was take some time away from work to focus on my mental health. Toward the end of the day, after completing a large report through anxious, hysterical tears, I sent the email that I would be taking time off.
Just before the close of business, I got a call from a number I didn’t recognize. Since I had been communicating with various mental health professionals, I answered. The young woman on the other end of the line identified herself as someone who worked at my neurologists’s office. I don’t remember if she identified herself as a nurse or a healthcare tech or a receptionist. I assured her that she’d reached the correct patient.
“Great, okay,” she said, “So, I’m calling on behalf of Dr. Shyu. We did the spinal tap, and you do have MS, and he wants to know if you are comfortable treating it medically.”
All the calm that I had striven to cultivate over the past couple of hours gave way to a whirring in my head, my heart thump-thump-thumping in my chest, my ears ringing loudly, all my blood pooling rapidly toward my feet.
“Uh. Okay. Uh. Well, um, what does that mean, to treat it medically?”
“He’ll talk to you about all that when he sees you, so let’s go ahead and get you scheduled to come in, okay?”
I numbly scrolled through my calendar and we set a time in a few weeks for me to consult directly with the neurologist. In the meantime, I set that diagnosis and all its gravity somewhere on a shelf in my mind so I could focus on what seemed more pressing in that moment: figuring out and managing my anxiety and depression and becoming a person again.
I wouldn’t even begin to process the MS diagnosis for weeks. Truthfully, I’m still only beginning to process it. I spent the next few weeks focusing on my mental health, and coming up with strategies to manage the often soul-crushing stress of my job. I fell into a better sleep pattern, being sure to get plenty of physical exercise and fresh air during the day to help make staying asleep all night a more attainable goal. I spent hours and hours outside with my son, walking all over town with him in his Jeep stroller and me listening to audio books in one ear and keeping the other on alert for his questions and words about the environment around him.
“Baaaa!” He would yell and I’d reply, “You’re right, that’s a bus!”
It was a beautiful time of year, and stopping the Latuda had profoundly changed my mood. The physical activity and the fact that I was no longer hopelessly binge eating meant that some of the weight from the Zyprexa started to melt off. And everything I had read said that exercise and sleep are two huge components of successfully managing MS.
When we met with the neurologist in June, he started out condescendingly telling us about “a disease called multiple sclerosis” before Em cut him off and told him that train left the station a month ago when his staff blurted the diagnosis to me over the phone late on a Friday evening. We decided that I would begin the vitamin D regimen he suggested, and we would schedule with the MS specialist at the Illinois Neurological Institute, but we would hold off on the every-other-day medication injection he believed I should start. The notion of beginning such a rigorous medication routine that I would have to uphold for the rest of my life seemed overwhelming. And, particularly after the stress and trauma of the previous year and a half, I just needed a minute.
I was scheduled to return to work on a Wednesday. The week before that week, I started to feel sluggish and unwell. I still walked with my son to visit parks all over our town, and we still went to the pool, and we were still social. But I was dragging, walking more slowly, fatigued, my stomach unsettled.
On the Sunday before I was to go back to work, I was feeling particularly rundown. I was sure it couldn’t be pregnancy. Although we had been married for two months, we weren’t exactly doin’ it like stereotypical newlyweds. Between sleep deprivation, a teething and boundary-testing toddler, medication adjustments, laundry, dishes, the dog, the garden, work obligations, and all the other realities of Serious Adult Life, we were like ships passing in the night. “Foreplay” had morphed into a quick text that read, “the baby’s asleep, wanna have a quickie?” because that was our reality. Articles and blogs all over the internet will tell you that we’re doing it wrong, that we should be making it a point to connect more intimately, that our relationship is doomed to capital-f-Fail if we don’t get it together and reignite the spark of romance and intimacy.
We don’t buy it. This is a phase of life, one that we wearily acknowledge is draining. Sometimes, like most couples who find themselves in the trenches, we lament the days when we could lazily lounge in bed well into the late morning, or settle in for an afternoon nap that didn’t involve leaking diapers or bottles. But we have chosen to raise our child(ren) in a very specific way, focusing on the child’s psychological needs, centering on attachment and gentleness, and that often spells sacrifice.* And the reality of who we are as people is that, given the choice of sex or food/sleep/introvert downtime, we often choose the latter. Cause, I mean, orgasms are nice, but is there anything better than sitting in your underwear with a good book or show while downing some delicious cuisine, particularly when there is not a tiny person pulling at your legs demanding to have his needs met?
On that Sunday before I was to go back to work, I though I’d just check my situation with an ovulation predictor kit, and if it gave any indication that I was somehow pregnant, I’d run to the drugstore and pick up a pregnancy test. The digital ovulation kit returned a static smiley face, which means that you are at your peak fertility. Basically, the test detects a surge in Luteinizing Hormone, or LH, which indicates that you’re fertile. Or… that you’re pregnant. In the couple of months in autumn 2016 that we had been lazily semi-trying for a second child, I had never gotten the static smiley face. I had gotten the flashing smiley, which means you could be fertile, but offers no guarantee, but never the “you should get some sperm in there ASAP if you want to get knocked up” static smiley.
Concerned, I texted my husband, who was on a walk with our son, that I was going to run to CVS. I grabbed a two-pack of digital pregnancy tests. I didn’t want to mess around with lines and crosses, pluses and minuses with potentially ambiguous meanings. I wanted the test to literally spell out the results. When I got home, I skipped every other step on our staircase on my way to the upstairs bathroom so I could pee on the stick. In the meantime, the fellas arrived home from their walk. I took the developing pregnancy test downstairs with me and stuck it on the mantel, preparing to wait the requisite few minutes for the test to return a result. I stepped into the kitchen briefly, and glanced at the test when I returned only a few seconds later.
We still had whole minutes to wait, yet there was the word, “PREGNANT” in block black letters on the digital gray background. Apparently, I was so indisputably with child that the test didn’t need much time to give me a result. I burst into tears, and not the happy kind. I had finally found my footing after months of trying to get myself together, I was facing down a frightening diagnosis and a disease that I would have to manage for the rest of my life, and we had basically decided that we were perfectly happy with our son, and would be delighted for him to be our only child. Life had only just started to feel somewhat normal again, with tiny glimpses of our pre-baby selves and life shining through here and there.
With nearly every fiber of my soul and my heart, I did not want to be pregnant. Of course, I’d love another child. But consciously, logically, the concept did not fit with what I wanted from this stage of life. We were rounding the bend toward having a toddler. A real toddler, the kind that arches his back and spits fire when the smallest thing doesn’t go the way he wants, the kind that hits you and tells you “NO!” and whose little brain is so electrified with neurons that his tiny heart can’t contain it all and his enormous emotions roll out of him in life-interrupting ways. The idea of adding a newborn to the mix, particularly when I had just pieced together my psyche again with twine and tape, seemed completely overwhelming.
Over the coming weeks, my pregnant body did everything in its power to keep the reality that I was undeniably pregnant at the forefront of my mind, even as I struggled mentally and emotionally to accept it. I spent weeks huddled over toilets, trash cans, buckets. I hurled into trash bags and grocery bags in back seats and standing in my kitchen. I puked into the sink when I couldn’t make it anywhere else. I vomited on myself, on the floor. I once threw up so violently that it made me pee my pants (I would later find out that peeing one’s pants is just a thing that happens to pregnant women). I cried hysterically, the jostling of which made me throw up again, even harder. When my system was empty, I dry heaved, my whole body lurching from my toes, my stomach and intestines trying angrily to claw their way up my throat.
And even if I’m not vomiting, I am plagued with severe muscle spasms, sudden migraines, debilitating headaches, and mind-numbing fatigue. I cannot treat the cervical dystonia that causes the muscle spasms because no one is comfortable injecting a pregnant woman with Botulinum toxin, even if she begs.
Today, I am eighteen weeks pregnant. This morning, I woke up confident because I hadn’t ralphed in nearly a week. Not even the early-morning, nothing-but-bile sessions that had become just part of my morning routine. For six whole days, I had kept the contents of my stomach where it belonged. Sure, I’d had lots of pain and other issues, but not hurling is a huge deal after three months of doing it nearly every day, usually multiple times a day. And then, as I was in the middle of eating breakfast, I felt the familiar tension in my body, the signaling to my brain to GET THEE TO A RECEPTACLE. And, with a bite still half-chewed in my mouth, I found myself hunched over the bucket that sits permanently on our end table next to the recliner these days.
So, the clock starts over. And I couldn’t start the MS drugs even if I wanted to at this point (there are some MS medications that are compatible with pregnancy, but not the ones my neurologist wants me to take). But, yesterday, our son turned two years old, and before they climbed out of bed to come downstairs and greet me, his dad taught him to say, “Leo is two.” And, after they made their way out of our bedroom, my husband asked him if he had told me, and our little lion stood at the top of the stairs, and whispered down to me, “Leo dooooo!” Assuming this next little boy is half as darling as our first, I think we’ll be all right.
* This in no way indicates that everyone should raise their children our way, or that other parenting styles are without sacrifice. By all means, do whatever works for you. I would say I won’t judge you, but we all judge each other all the time, so that would be a lie. But I won’t take it personally when you judge me. Also, “gentle” parenting does not mean that we don’t occasionally lose our shit, and it definitely doesn’t mean we don’t have boundaries and don’t say, “no.”