How to Be Sick

You can tell from my blogs on my hyperemesis gravidarum that I had a rough pregnancy. When you’re wondering if your body is even capable of bringing a baby to term, because you’re basically allergic to being pregnant, and you could lose your own life and the life of your not-yet-viable baby…it’s a lot of stress. Constant bedrest is frustrating. Throwing up every five minutes is frustrating. Not have the strength to shower or bathe yourself is frustrating. Constant hospital visits and IVs and PICC lines and home deliveries of medical goods to your front door except you’re too weak to pull the boxes inside before your husband gets home or your friend comes over to help…

I needed help, emotionally. Mentally. My soul was cracking under the weight and I didn’t like what I saw on the other side of that potential breakdown. Sitting through therapy sessions was not going to happen, mostly because I couldn’t leave the house, wasn’t bathing enough to be presentable enough to do so anyway, and would throw up throughout the whole session.

So I turned to books—my always-teachers.

This book was written by a woman who is chronically ill. Her illness is inexplicable and difficult to treat. It can take frustration to an exponential level when even your doctors don’t know how to help you.

Thankfully, this author was practicing Buddhism well before she became ill. Her advice and anecdotes are calming and never make light of the emotional, mental, and spiritual pain that can be brought on by chronic illness. In particular, her experience as a person who enjoyed good health for many years before contracting her chronic illness highlights the frustration that comes from a mind that believes you should be able to do more and a body that relapses if you push it too far.

Her writing is thoughtful and kind, commiserating and empathic without being self-indulgent. Her insights and explanations of how Buddhist practices and philosophies could be helpful served as a powerful building block for me. Ultimately my illness was an opportunity to grow and evolve in many ways, and I believe this book helped me on my way towards that. I learned a different kind of patience, through my illness and the teachings of this book. I think I am a better person for it, even though I would never wish HG on anyone.

This book is a wonderful choice for anyone dealing with sudden or chronic illness which does not have a clear end in sight or which triggers a spiritual dark night of the soul. I would recommend it to any woman with HG, as well as anyone struggling to come to terms with the limitations an illness poses on their body and life.


The End of HG: Our Birth Story

I suppose the beginning of our birth story starts with an OB appointment. I had my week 37 growth scan with the perinatologist, and the results weren’t heartening. An abdominal circumference higher than the 99th percentile, and a head size in the 97th percentile. My OB drew me a bell curve and charted out our chances of getting the baby out of me naturally—he said we were probably running a 40% chance of either oxygen deprivation during labor and/or broken baby bones while trying to get baby out of my pelvis. And, a slight chance that baby’s head would fit but shoulders wouldn’t, in which case you’re looking at a 1% survival rate if they try to push baby’s head back through my pelvis to do an emergency c-section.

Looking at those odds, it’s vastly preferable to just do a scheduled c-section. It took a few days of calling my OB office to remind them, but then the labor and delivery nurses at the hospital finally stepped in and bugged my OB until we had a date and time nailed down. Then it was just six more days of waiting, and a 7:30 AM c-section (arriving at the hospital at 5:30 AM that morning).

I’ve got some control issues, a holdover from my childhood/relationship with my parents. They manifest most often in other family relationships, in people who have certain expectations and are vastly disappointed in me if those expectations aren’t met. So, I can get a little controlling when I feel like people are expecting something of me that I don’t necessarily want to grant. In this case, it was extremely important to me to preserve my dignity during the invasive procedure of cutting a baby out of me. I told all the (grand)parents that they should just hang back until we let them know that the surgery was over and we were settled. My mom ended up going in for a semi-emergency surgery of her own that morning, so it was just the in-laws who came into town. Respectful of my wishes but also trying to fulfill expectations of her own, my mother-in-law was waiting in the hospital lobby at 5:30 that morning to wish us well. She did go back to their hotel after that, for which I’m grateful. The last thing I want while I’m on the operating table is to worry about all the people who are impatiently waiting for me to make an appearance afterward. Having no idea how I would feel, or whether there would be any complications with me or the baby…it just made sense to tell people to chill out, relax, and not expect anything from us until it was all well and truly done.

My husband did an excellent job of being my sole support person (being the only person I felt comfortable having around while I was naked under hospital gowns, organs exposed during surgery, etc.). He described his feeling that morning as a “first day of school” sort of anxiety. We made sure he ate something (I had to fast for eight hours prior to the surgery), and made jokes and took pictures of him in his surgical scrubs. I got an IV and some instructions and a really fabulous Labor & Delivery nurse who walked me through everything with clear explanations, eye contact, and reassuring touches. The operating room was very bright, and slightly warm (to accommodate for baby). The table was much more narrow than I was expecting, but there was no risk of me falling off with that epidural.

The fabulous nurse held my shoulders while the anesthesiologist administered a numbing shot and then the epidural. I think that was the scariest part, just because you’re conceptualizing a shot going into your spine, and if things go wrong with your spine they’re not little things. I was just able to swing my legs up onto the table and lay down, and then they set up the curtain and surgical area while the tingling spread and my anesthesiologist tested my sensation with a pin. At one point, before my husband was even seen into the room, my OB asked, “Did you feel that?” My response was, “Feel what? Cause I didn’t feel anything, if you did something.” “I made an incision. I already started cutting.”

With hubby there with me, holding my hand, the rest went pretty quickly. There were a lot of tugging, pulling, pushing sensations that I could feel somewhere around my rib/breast area, but it was more the suggestion of things being done than actual feelings of touch or anything like that. And at one miraculous point, with a lot of tugging and moving of my numbed body, I was all of a sudden able to expand my lungs to their full size for the first time in months. It was—well. People talk about childbirth like it’s a miracle because they think children are blessings and reproducing a sentient individual is so damn cool and all. I think childbirth is like a miracle because of how in one split second it can restore you completely to yourself. Just you. No longer two cramped people sharing the same space. You get to live alone in your own body again. And if that isn’t the coolest feeling in the world, I don’t know what is.

The OB held the baby above the curtain for us to see the sex (though we were so shell-shocked we had to double-check with the nurse in charge of her!). They weighed her (7 lbs 15 oz), clamped her cord, wiped her down, all within sight of us. They brought her over to my shoulder so we could get some skin-to-skin right away, though pretty soon after her arrival there I had to turn away to be sick with a slight bit of projectile vomit that came on rather suddenly. I really only had time to say to the anesthesiologist “I’m feeling nauseous” before it was coming out. I’ve heard it’s pretty common for HG moms to vomit one last time during labor, and I’m not sure about c-section moms but it makes sense to me that my body would be freaking out a bit with all the cutting and such going on.

The rest of it was just a matter of cutting my tubes (thank the gods!) and sewing me up. Dissolvable sutures and dermabond. Super easy. The incision itself is about ten inches long, but then, she was still a pretty big baby for my 5’3” frame (and short torso).

Afterward was when I was so grateful for asking everyone to just hang out elsewhere instead of waiting impatiently at the hospital for us to finish. It isn’t like the movies, where dad comes running out yelling “It’s a girl!” and the baby is wheeled to some room full of baby bins and you coo at the one with the right name tag. Since she wasn’t exhibiting any ill health indicators, and her sugar checks were coming back in a good range, she never left our side. They wheeled us to a recovery room where my L&D nurse and the baby’s nurse stayed with us for two hours, taking vital signs and checking the things they check every 15 minutes without fail. It wasn’t an appropriate time for visitors—not with my bleeding constantly being checked, with her heel being pricked, with Matt being so steamrolled with the enormity of a baby AND a wife who had just been through major surgery. He was fantastic. Our phones had to be on airplane mode in the operating room, and we just left them like that, much too busy and preoccupied with “Is everything okay, is everyone healthy” to worry about the outside world just yet.

Eventually they transferred us to a room on the mother-baby floor, and we finally started calling and texting and sending pictures, trying to get the order in which we told people right (all the (grand)parents deserved to know first, then the siblings, then the extended family and friends, and on down the list all the way to our old therapist and the nurse practitioner who helped with my gestational diabetes…). My in-laws came to visit once I was decently gowned (still stuck in bed with no feeling in my legs and catheter inserted…but at least draped enough for slight modesty’s sake).

For a while the epidural and the morphine they’d given me during surgery kept the pain completely under wraps, and I was just feeling over the moon. Better than I’d felt in months. Physically, I’d say every ill effect of the pregnancy and its complications went away almost instantly. Slight heartburn stuck around for a few days, but considering all the hormones still circulating through my system, that just made sense. The headache, nausea, general malaise and lack of energy, muscle fatigue, food aversions, bad taste in the back of my mouth…it all disappeared faster than a bad dream. It was a friggin lightswitch, and all of a sudden the HG beast faded like it had never existed.

Emotionally, I think I can easily say that the day I gave birth was the best day of my life. It tops the wedding, it tops the day we found out we were pregnant, it tops graduations and friendships and just…all of it. Because in just one surgery, in just one moment of that sweet full expansion of lungs, I got myself back.

As far as the kid goes, Senga is fabulous. I’m very much in love with her. I don’t feel super different now that I’m a “mom.” Nor did I really expect to. I’m still me. And she’s her own person, and I have no idea who that is yet. I expect we’ll love each other, and we’ll fight, and we’ll have an interesting adventure getting to know each other and navigating some of the messier parent/child battles. All of that comes later, though. Mostly, I’m just so in love with every bit of her. I described it to a friend like this: “I’m super grateful to her for giving me the chance to house her body and soul for a little while, and I’m in awe of her existence because it’s so freakishly weird and cool that I helped make her.” Our pregnancy journey was not easy. If we’d known what to expect, we would have chosen a different path, and found a fulfilling life in other ways. We chose to have her, though, and we chose to survive the nine month battle to buy her the time she needed to come into this world. And now that she’s here, I feel like every smidge of discomfort, every experience that could now be an emotional trigger, every bit of physical deterioration, was ultimately worth it. It was a high price to pay, but I’m glad I did. And now I get to go along for the ride of watching her grow up and become who she’s going to be. How cool is that?

Finding Peace in Additional Pregnancy Complications

My battle with hyperemesis gravidarum isn’t over yet. It won’t be, until I give birth, and even then I know I will struggle with post-traumatic stress disorder brought on by this debilitating illness.

This week we’ve had a new pregnancy complication to deal with, on top of everything else. I just barely failed the one-hour glucose test set by my doctor. They had me go in for the three-hour test next—a rather hopeless undertaking considering my state. Fasting for twelve hours and then putting 100 grams of glucose straight into my empty system almost guaranteed a poor outcome. I made it past the one-hour blood draw, but then the exertion of walking back to the waiting room to wait for another hour sent me over the edge. The bathroom had nice thick walls, so no one could hear the retching as I lost all of the sugary lemon-lime awfulness that hadn’t yet been absorbed by my system.

It was scary, walking into that handicap bathroom stall with no one else around. The world was spinning and my vision was going dark. I couldn’t help thinking about my obstetrician’s warning, that a fall at this stage could seriously hurt, even kill, the baby.

Nausea and I are old friends by now, so I lay down on the cold floor. Sometimes if I can cool my temperature enough by contact with the tile floor, I could stop myself from vomiting or passing out. Unfortunately, it works a lot better when I’m in my own home, not wearing any clothes (any pressure or constriction from fabric can exacerbate nausea, and even seems to make my skin crawl more violently when I’m dealing with an episode of restless legs). There wasn’t enough of my skin exposed to the cold laminate, so lying down didn’t lower my body temperature enough. I barely hoisted myself to the trash can in the corner of the stall fast enough.

Luckily for me, I didn’t pass out. Emptying my system of that horrible glucose concoction stopped my vision from greying, and made me feel more steady. My system was still reeling from far too much sugar entering it at once, and the baby was definitely doing the flips and tumbles that I now associate with a transferred sugar high. The phlebotomist I informed seemed scornful and disappointed, like it was my fault that I couldn’t keep the drink down. I’ve gained more compassion for people who seem to judge me for my illness, though. Early the very next week she was the one to draw my blood for other tests, and she was kind and efficient, going straight for a butterfly needle the way all exceptional phlebotomists do when faced with my difficult veins.

One of the midwives in my doctor’s practice told me to track my fasting and post-prandial blood sugar levels for a week, and report back to her. Something I wish I could have just done right away, without enduring the trial of attempting that brutal three-hour test.

My numbers came back on the verge of being bad the first day, but we weren’t worried yet. There was a special cleaning and purging session at work, and for the first time in months I had my husband take me in so that I could cover the phones while my colleagues worked on the special project. It felt so good to be useful in such an obvious way.

The exertion of those hours sitting at the phone though, seemed to act the way light exercise does—by the next day, when I was completely wiped out and unable to do anything physically exerting, my numbers were already higher. They keep climbing up. I’ve noticed a terrible feeling of dis-ease that seems to correlate exactly with the height of the numbers. A friend took me to the grocery store, an undertaking that completely wiped me out yet again. Even eating a “diabetic diet,” I can’t get those numbers under control.

For the past six days I have been sleeping close to 20 hours a day. I’m more nauseous all the time, a nausea that the Benedryl doesn’t seem to touch anymore, I suspect because it’s brought on by the high blood sugar. My fasting numbers are always high, and even limiting carbs and making sure to have a good protein source with every meal and snack isn’t helping much.

I suspect that my body is just too worn down to deal with this new complication. Gestational diabetes is similar to Type II, where your body is still producing insulin but your cells are more and more insulin-resistant. It is likely to get worse as long as I have this placenta in me, producing greater and greater amounts of hormones that are helping baby put on the fat stores it will need for protection in its first weeks out in the wider world. I have to wait to see an endocrinologist—I don’t know how long it will take them to call me to set up my first appointment, but I’m hoping it’s soon. I haven’t gotten a single bit of work done this week, because of how awful I feel on a constant basis. I don’t think my blood sugar ever drops below 90, and even two and three hours after a meal I still see numbers that are very high for a non-diabetic. I can’t go for a half hour walk after meals to help use up the sugars entering my system—I hardly have the energy to make myself eggs in the morning, though their protein is one of the only things that doesn’t make my blood sugar shoot higher.

With all of this going on, I’ve been feeling very defeated. The hyperemesis is in NO WAY my fault. Likewise, the gestational diabetes is NOT MY FAULT. Likely the GD is actually caused by the HG wearing down my system—nothing is working as it should, and if I was able to keep up a normal diet and routine of exercise I might not have ever gotten into the range of GD. Even knowing that there’s nothing I could have done to prevent either of these illnesses/complications, I still feel targeted by the universe. It feels like everything that can go wrong at this point will likely go wrong, because my body is so worn down and incapable of handling this strain. That’s a mixed bag in a lot of ways. The more complications arise, the more likely my doctor is to decide on an early cesarean, which means pregnancy is over that much faster, and recovery is right around the corner. But at only 30 weeks pregnant, I still need another six or seven weeks before we wouldn’t have to worry too much about baby’s health at being delivered early. And even at 36 or 37 weeks, baby’s lungs might not be as developed as we’d like, and we could be looking at dealing with baby being in the NICU post-delivery.

The title of this post might be a little misleading. I haven’t actually found peace yet in these additional pregnancy complications. But I’m trying. I’m struggling, I’m battling, I’m trying to cultivate acceptance and a calm mind. I write late-night rants to a friend who is a good listener. I reach out to my cousin who was the man of honor at our wedding, the brother I never had. He has a way of reminding me that life is worth it, that I’m worth it, no matter what I’m facing in the current moment. I kiss my husband and long for a return to normalcy for us, when I can shop and cook and clean for him again, when our sex life is normal because my body is no longer frail. I fear, every day, that I might never get better. That the instant relief other HG moms feel as soon as they deliver the afterbirth won’t come, and I’ll be looking at a life of nausea and complications, at failed organs and feeble health. I read books on Buddhist acceptance and release from suffering. I dutifully record my blood sugars and count the kicks of my squirming tenant.

I am trying, and that is all anyone can ask of me.

You can find the other posts in my series on hyperemesis gravidarum here.

Restless Legs and Alien Parasites

Arguably, the chances that I’m carrying an alien parasite a la face-eater are pretty slim. We’ve had two ultrasounds, and it looked pretty human at the second one (this doesn’t, however, rule out werewolf, because it wasn’t a full moon on the date of that ultrasound…). Still, when something at the crown of your enlarged belly seizes up and feels like you think it would feel if someone were to punch you and then just hold that force in place… Followed a few seconds later with a swift jab to the inside of your ribs that reminds you to start breathing again… It’s a little unsettling.

We already know that I’m not one of those women espousing the “joy” and “wonder” of pregnancy. Sure, I think it’s cool in a sort of weird way, that we can create life and all that. And since I believe in souls, I spend some of my time wondering how the hell the soul gets in there, and at what point in the procedure it enters, and whether I would be able to feel another soul inside my soul, or if they could even occupy the same space at the same time, though they probably wouldn’t have anything to do with the physical plane as I understand it… So yeah, mystical process of creation and all that. Women’s bodies are miraculous and whatever.

But dark humor is really how we’ve survived this pregnancy. You kind of have to, when your body is basically allergic to being pregnant, and you and your poor parasitic fetus almost die a couple times. If you’re not laughing about it you’re neck-deep in despair, and that’s not very productive or helpful. Heap on top of that the scorn from the rest of the world who sees you “making light” of this whole miracle of creation, because they’ve never gone through HG and probably never will, and therefore don’t understand an iota of your emotions or experience at this point…

The truth is, I’m probably going to be a great mom. I don’t say this out of arrogance (well okay, I can be pretty self-assured, but still). Being so sick, and so close to death, it gives you an interesting perspective. You realize what matters and what doesn’t. All the WEIGHT of society’s expectations, imaginary concepts like “career success,” it just starts to slough away. I don’t shower much when I’m this ill, but every time it feels like more and more layers are being scraped away. The surface stuff that doesn’t matter. The walls we’ve built up or had placed on us that are supposed to help us fit in with everyone else, protect ourselves and make “progress” in this strange world.

The fact is, everyone is always telling us what to think, how to behave, what to feel. Very rarely are we left to our own devices to discover what is unique and intrinsic to our own cores. I realized today that the first time I told the world I wanted to be a writer, the message I immediately got back was, “You’ll never be able to support yourself with that.” There are two implications there. 1) I’ll never be a good enough writer to make a living at it, like some writers are able to do. That’s an interesting one, and probably due more to the psychological baggage of the person saying the comment than an actual reflection of my talent (it was seventh grade, no one expected me to be a Hemingway or King or Rowling yet). And, 2) The way to measure “success” as a writer was connected to monetary reward.

Have you caught on yet? How silly that second implication is? It took me a while to see it. How much money we make tends to be all wrapped up in our feelings of self-worth, because, hey, America. Couple that with a generation like mine who’s fighting tooth and nail with the baby boomers for their jobs, and more often than not failing due to lack of experience because hey, we’re still young, and you’ve got a dangerous cocktail that plunges you into mad despair. Except, look at the writers I most admire. No, I take that back. Look at the people I most admire. They tend to also be writers. But they are people first. I think of my middle school English teacher. She saw the passion in our fumbling attempts at poetry and prose. She encouraged us, praised us, pushed us to open up that well of creativity and let it pour out through the pen. My 11th grade English teacher, who had us write essays on what we thought was important to the human experience. Who let us pick feminist books to read, and told us that our opinions mattered and that we were people, valid and important, regardless of the teenage hormones raging inside. My undergraduate creative writing professor, who realized how fragile a college student’s ego could be, who would couch criticism in encouragement just to see a student keep writing, because as soon as we stop, there’s where despair lies. My graduate professors, who realized how necessary and timely it was to deliver swift kicks to the ass when your dialogue was boring or nothing was working dammit.

What’s interesting about all of these people? They have day jobs. Teacher salaries, sure, which are woefully inadequate in America. But a lot of them are writers. Published writers. Hell, my graduate thesis professor has written so many books and short stories that his Wikipedia page lists only “Selected Works.” I’d say he’s pretty impossible to keep up with, the pace he writes at. So why teach? Along with a healthy appreciation for the profession, I imagine there’s some desire in there for many of these people to have a slightly more stable, reliable income. Maybe health insurance, if we even offer that to teachers (we do, right? Please tell me they get health insurance…).

So, is it true that the measure of a writer’s success is in how much money they make? I’d say no.

Is it true that the measure of a writer’s success is in whether or not they’re published? Again, I’d say no. There’s a part of us that wants to be heard, to connect with someone out there in the faceless multitude. It’s why we write. But does it have to be through traditional publishing, or does it have to happen within a certain time frame? No, and no.

I’m 25. I’ve got a graduate degree, but no completed manuscripts I’d be ready to send to agents. I’m about to have a baby, which people tell me will take up a lot of my time and energy for the next 18+ years. Should I be down on myself for not being published yet? Or should I use this time to reclaim my natural love of writing, the mysticism and passion that I felt back in the seventh grade?

Because, to me, that’s so much more important than money. Writing used to be so much fun. It had a sense of wonder, of discovery and adventure and exploration. I want to feel that again. And that means, for right now, separating “being published” from my definition of success as a writer.

So on these long nights, when the infuriating, mysterious cases of Restless Leg Syndrome descend and keep me from sleep (not for any proven reason, but just because I’m PREGNANT, like that’s a specific medical, chemical, hormonal, genetic reason for something…), maybe I’ll be here, trying to reclaim that sense of wonder.

You can find the other posts in my series on hyperemesis gravidarum here.