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.

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.

A Day in the Life of HG Recovery

I just hit the 20 week mark of this pregnancy. Officially half over. The first 20 weeks were the longest and hardest of my life, due to hyperemesis gravidarum. When I think about the things that helped me through the darkest times, I think about endless internet searches for forum posts and blog entries. Desperately grasping for some reassurance that I’m not alone. That other women have been through this, and that they survived.

An astonishingly small number of those women talk about the really dark parts. You see it hinted at, here and there. Just last week I stumbled on one that was a real stream of consciousness account of the worst times. I think it might come from the fact that when we’re in those dark times, we don’t often have the energy or capability to write down what we’re feeling. It’s too much work, just trying to lie completely immobile in a dark and hopefully scent-free room, fighting with every ounce of your will to not throw up for the twentieth time today. And then when you get past it, when you’re starting to feel like a person again, you don’t WANT to dwell on those bad times. You don’t want to remember how flimsy your resolve was, how much this illness stripped away every recognizable part of you and showed you what you really are, underneath it all.

Not being able to find enough of those accounts is why I wrote this blog entry. In some ways I want to be able to remember how low HG brought me. I want to look at how broken and defeated I was. I want to mourn the loss of the person I was before HG swept into (and took over) my life. And I want to be able to compare that to the person I am now. Slowly picking up the sad, small pieces that are left. Trying to build them up into a stronger person.

Today, though, I want to address another part of HG that I had trouble finding accounts of: Recovery.

The tricky part with this is that some women don’t experience any lessening of HG until after they give birth (and sometimes not even then, because the nausea will linger). And for many HG women, it seems to be the norm for the symptoms to shut off like a light switch. All of a sudden the nausea is gone, the appetite is back, and the only lingering effects are atrophied muscles and teeth corroded from all the stomach acid. Not to mention the more subtle psychological impacts that give many HG women PTSD. So, a gradual recovery isn’t very common, and once these women have their baby in their arms I think many of them want to just put HG behind them, rather than record how they come back from it while dealing with a newborn. Not to mention that a mother with a newborn is a very busy woman, and might not have the time or energy to keep talking about HG and its longterm effects.

But here I am, at week 20 of the pregnancy. It looks like I might be one of the lucky women who experience some relief from the HG during the second trimester *knocks on wood*. It might only be due to the steroids, it might be linked to the placenta taking on more of the task of regulating hormones for the baby, it might be due to the lessening of the huge amounts of hcg coursing through my symptom. We really have no idea, because no one has yet found the cause of HG.

I haven’t vomited in a month. It has been a full month since I have had to be in the hospital. I took a shower yesterday. Life is considerably better now than it was in the dark times.

So here is what a day looks like for me, trying to recover from HG.

Wake up around 8:30, praising the Unisom I took last night because it let me sleep for a full ten hours, only waking up a couple times because of vivid nightmares (this time including velociraptors, which is what I get when I read Michael Crichton before bed).

Open the bedroom window a bit to catch some of the sound of the light rain, so rare in our California desert areas. Pull the covers up some more, because the air outside is finally, officially cold.

The cat notices I’m awake, and decides it would be excellent if I got up right away and fed him a can of wet food. I spend the next half hour pushing him off the bed, trying to protect my stomach so that he doesn’t step all over the baby as he tries to bug me into getting up. I browse Facebook, check up on what my pregnancy app says is going on with the baby during week 20.

Eventually my bladder is just too full to let me stay in bed longer. I pull bottle after bottle out of my nightstand drawer, which won’t even close anymore because it’s overflowing with about twenty different medications. I dutifully take my steroid dose, trying not to worry that tomorrow is the last day of the steroids, and we don’t know whether I’ll be doing well when I have to cut them out completely. I take my Pepcid, thankful that switching from the Prilosec worked, because I was worried about what it was training my body to do, being on such a strong acid blocker for so long. I hesitate for the merest second before also taking my Benedryl, reasoning that even if I’m not super nauseous right now, it’s better to be safe than sorry. Already having Benedryl in your system is much better than getting super nauseous and then having to swallow one.

I remember the conversation I had with friends yesterday, that before I got pregnant I thought I would eat entirely paleo and never take any medications or even have caffeine while I was pregnant. I’ve done great on the caffeine side of things, but I’m lucky if I eat anything at all, so it doesn’t make sense to restrict my diet. And the “no-medications” I had to give up on in week six of the pregnancy, or risk both myself and the baby dying. So it goes.

I intend to brush my teeth right after emptying my bladder, but find myself already back in the bedroom. Women talk about “pregnancy brain,” the sort of absent-mindedness that causes them to forget what they were doing or where they were going. I think it’s training, for when the baby comes. Like your brain wants to show you that you really aren’t capable of multitasking, when you have fifty million things running through your brain at any given time. You think of everything, but have follow-through on nothing. I sit on the bed again, wondering if I really have it in me to go back to the bathroom and brush my teeth. I think about the awful taste in my mouth, and trying to eat food with it present. I decide to brush my teeth.

The minty toothpaste helps for a minute or two with that nasty taste that lives in the back of my throat. I described it to my friends like this: picture a hearty kale smoothie. That you leave out on the counter for a few days, until it’s growing a nice patch of mold. Imagine that you drank just the chunky bits, and they coated the back of your throat. That’s the kind of taste I live with every day.

I’m not hungry, in fact the idea of food makes me feel like crawling under the covers and trying to sleep until doomsday instead. I force myself to walk to the kitchen. I microwave some frozen, fully-cooked sausage links. Gone are the days of cooking fresh food for myself. I fill a small disposable bowl with Cheerios and milk (the less dishes that need to be cleaned, the less my husband has to do when he comes home for the weekend). The milk coats the taste at the back of my throat, making it even worse for a while, but I think about the calcium that my baby probably needs right now, and I force myself to finish it all. I chase everything with a banana, which helps with the taste for a little while.

Five weeks ago, I was in the hospital with a feeding tube, IV nutrition, and IV meds every six hours around the clock. I owe my ability to eat entirely to the steroids, which after four days of IV dosing finally started kicking in to stop the vomiting. The 40 mg of prednisone I took the week after the hospital gave me a voracious appetite, trying constantly to soothe that empty feeling I had in my stomach all the time. Now, on 10 mg, I’m lucky to force things down and not have them come back up. I don’t eat enough most days, because when you have no appetite and no energy even getting up to get yourself a snack is a monumental task. But I’m eating every day, and my body must be absorbing some of the nutrients for the baby. I don’t feel stronger at all, but the baby still feels alive and well.

I seriously consider spending the entire day catching up on Once Upon a Time episodes. I know that when I push myself too hard, I don’t just sleep more and have achy muscles. The HG symptoms get worse, threatening a relapse. Last week I drove myself to my doctor appointment, for the first time in three months. I even went to Target afterward to get myself some milk and shampoo. I paid for that the rest of the week with increased nausea, less stamina, and poor sleep. I get a little better on the weekends, when my husband is here getting me food and water. I don’t have to get up as much, then, and I end up eating and sleeping more.

I decide that today should be a productive day, as much as I can make it one. I feel guilty, doing anything “productive” that doesn’t involve working from home. I feel like they might have forgotten about me for the most part. They must all be used to me not being around, by now. I know I’m lucky to have a job who won’t fire me for being so sick. I’m lucky to have a doctor who will sign off on my short-term disability, so that I won’t lose my job. I worry, though, about when my doctor says I’m “well” enough to start working again. I think about how much it taxes my strength for the rest of the week when I take myself to a doctor appointment. I think about the half-hour drive to go to work, and the rewarding but relentless minor stress of “getting things done” while I’m there. Even working from home, I know that added responsibilities at this point will stretch my limits. It could all bring about a relapse, and then I’m back to bed all day every day.

Every tiny bit of “progress” is like that, for someone who isn’t sure whether the HG is going to come back with a vengeance. Third trimester relapses are unsettlingly common, unfortunately. I could manage to go back to work week 21, build up to actually going into the office and working a full 40-hour week. Only for it all to come to a grinding halt around the mid-30s weeks, as I descend back into something as bad as the dark times at weeks 8-11.

Or I could try to work from home next week, just a few hours a day, and then have an even sooner relapse because my body is just waiting for an excuse to succumb to the lingering HG. It feels like being stalked by a deadly predator every moment of every day. You hope that you’re hiding well enough, you hope that you can stay ahead of it. But it’s smarter than you, and stronger than you, and ultimately you won’t even see it coming.

I will likely spend the rest of the day trying to write blog posts, book reviews, and working on my novel. The going will be slow, and I will have to force myself to get up every couple hours to grab another snack. Once I’ve started eating for the day, it’s better to keep something in my stomach at all times to fend off the stronger nausea that accompanies an empty stomach. I will be looking forward to five hours from now, when I can take another Benadryl. They’re supposed to work on the nausea in a consistent sort of way, and maybe they do. But the real relief comes a half hour after taking it, when it’s hitting your system and for two or three blissful moments, you feel woozy and lightheaded but also amazingly free of nausea. It only lasts a few minutes, and then you’re back to a constant state of low-level nausea, but those minutes are damn worth it.

I won’t have the energy to do any cleaning today, though I could make a list a mile long of the things I’d like to be doing around the house. I won’t attempt a shower, because I just took one yesterday and I have to conserve my energy for when I really need it. Surprising, how much a single shower can take out of your energy reserves. I will likely say no, when my friends ask if I want them to keep me company later in the day, because I know that even as lovely as it is to have contact with real people, it also taxes my strength. I will try to get through the day without napping, because every time I let myself nap during the day it throws my whole sleeping schedule off, until I’m in a strange cycle of 5-6 hours awake, 5 hours asleep, 5-6 hours awake, 5 hours asleep, ad infinitum. Sadly, five hours of sleep doesn’t leave me feeling rested or rejuvenated, and it takes some careful Unisom dosing to get me back to sleeping through the night.

I will spend the day fighting myself, which is all I do lately. Mentally, I’m sound enough to know what needs to be done, what should be done, what I’d like to be doing… Physically, I have restrictions that don’t ever seem to want to let up. The constant state of frustration at not being capable of doing the things that I want to do wears me down. Give me three months off work and my normal strength and I could have had three novels completed by now. Instead, I’m lucky if I can write a little bit at a time, and not get nauseous looking at a computer screen. Gone are the hours of relentless pounding at the keyboard, writing or working and not noticing when the whole day has passed me by. Now I’m lucky to get through twenty minutes without having to pause everything, take a mental inventory of my symptoms, consider climbing back into bed to lose myself in fitful sleep.

Every day is colored by the fear that I will descend back into the dark times, without any warning. I may have reached the halfway point of this pregnancy, but that just means I know how damnably long twenty weeks can feel like. Twenty more weeks of this cautious testing of boundaries, the constant small relapses when I push myself too much without realizing it—it’s enough to drive anyone crazy. Doctors and family members and friends are always so overjoyed to hear that I’m not vomiting, that I’m eating a little and keeping it down. As if that means I’m finally better, and it’s all easy as pie from here. Except nothing is easy, when HG is stalking you. It knows where I live, it knows where I sleep, and there’s no level of cunning or strategy that can help me lose it entirely. It’s probably exactly what it feels like after the pregnancy, too. A constant knowledge of how low illness can really bring you. Anxiety or panic attacks every time you feel the least bit nauseous. A forever altered relationship with food, because you won’t ever be able to eat it without being aware in some small part of you that it could disagree with you. A fear that if you start vomiting, you’ll never be able to stop again.

Recovering from HG is as much a psychological battle as it is a physical one. I could be years out from needing another gym membership, because my body is so weak that I can’t even imagine being able to lift a 10 lb dumbbell. I don’t even know, at this point, how much I will hold myself back from even trying to push things, because of the fear of relapse. It isn’t one of those situations where you just throw up your hands and do it anyway, to see what happens. There’s enough fear in me to fill a fucking reservoir and keep a small city hydrated for ten years. And I’m not allowed to talk about the fear, with most people. They get slightly uncomfortable, talking about pregnancy in anything less than a happy, optimistic, joyful way. And eventually they all say something along the lines of, “at least the baby is healthy! Isn’t that great?” But I don’t define myself through my kid, the way some other parents do. It isn’t the be-all-end-all of my existence to have a child, and be a mom. I’m still my own person, and I still matter in plenty of ways that don’t factor a kid into the mix. Sure, I can be happy that we haven’t lost the baby. But I can also be damn sad about how sick I am, about how weak my body is, about how long it will take me to work back up to being a normal fucking human being, able to take care of myself and my house and my normal responsibilities.

You can tell there’s anger there, when I have enough energy to let it boil up to the surface a bit. Anger is my natural response to things—a defense mechanism so that I don’t have to feel defeated and weak. The truth, though, is that I am defeated. I am weak, and sad, and my life can now easily be broken into two halves. Everything before HG, vs. Everything after. I will never again be a person who has not known the terrible reality of such a debilitating illness. I will never again be able to look at myself and think that I’m strong enough to handle anything. I wasn’t strong enough for the HG. I couldn’t hold onto myself through it. I lost so much of who I was, and now I’m left to figure out who I could possibly be on the other side of it. All while worrying that it will emerge from the shadows to drag me down to the depths again.

I’m tired, and every day is difficult. I wish I could say I’m proud of myself for surviving, for still living. I’m still just doing what’s expected of me, though. Being a good little girl, forcing myself to eat and drink when I’d rather never risk that again. I’m tired, and I want to remember what it feels like to not have to TRY to stay alive.

For me, right now, this is what it’s like to try to “recover” from HG. This is the mental and physical battle that I fight every single day. There are plenty of women out there who know exactly what I mean, who have faced this day in and day out. My heart goes out to them, and I pray every day that someone somewhere will find the cause of this terrible illness, so that we can start working on a cure. Preferably before my kid has to go through it, since it might have a strong genetic link.


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

An HG Dark Night of the Soul

This is going to be a tough post to write, which is why I’ve been putting it off for so long. I came up with the idea for it during week 16 of the pregnancy, and we’re now at week 21.

Week 16 was still rough. The steroids were keeping me from vomiting, but nausea, headaches, food aversions, and lack of appetite were all still appallingly present. Round ligament pain was a big new thing that week, and resulted in a lot of days of not wanting to get out of bed at all, because OW. I might have added acetaminophen to the six or seven medications I was taking at that point, if I hadn’t already read that it didn’t help the majority of the women talking about it on the forums online. When you have to be heavily medicated just to keep you and baby alive, you view it as a small victory if you can go without just one of those medications. That week, it was acetaminophen.

By the time my husband came home for the weekend, I was at my wit’s end. I wasn’t vomiting, but I wasn’t better. I probably wouldn’t be better until week twenty at the earliest, and even then I was rocking a 49% chance that I would be one of the women who stayed sick the entire pregnancy. I had no idea whether I would ever be able to go back to work, or whether I would get any sort of break. With all the vomiting and hospital visits and medication schedules, I hadn’t had a chance to feel an iota of joy about the pregnancy. In short, I was worn thin.

I could feel the baby’s movements as fluttering, sometimes. But it still wasn’t real. I was a full eight weeks out from the baby having even the remotest chance of being able to survive outside of my body. I have no idea when a “soul” enters the picture, but I certainly didn’t feel like the vessel for another one in addition to my own. And my soul was pretty worn down. Pretty damn defeated.

Whatever your political or moral feelings are on abortion or “therapeutic terminations,” I don’t really care. Unless you have had HG (and had it at the same level of severity as I have, because not everyone has it this bad), I’m going to politely decline to receive any judgment you might pass on. It’s one of those things that you don’t get to comment on if you haven’t experienced it, the same way we should leave men out of any political decisions regarding women’s sexual autonomy or health. What it boils down to is this: I have always been the type of person who said that no matter what, I would never choose to abort a child that I had conceived in love. HG tore that happy confidence away from me.

I love my husband. We have a solid relationship, mostly because we have worked so hard these past six years toward that end. We both wanted this child, we were both over the moon when we decided to start trying. Even though most of our friends won’t be starting this process for another five or more years, we knew it was the right time for us. By week 16, after ten full weeks of debilitating HG, I was contemplating the possibility of talking to my doctor about a termination.

It didn’t come down to health, for me, though for many women they are forced into a corner in that regard. No one understands HG, and treatment for it is not standardized. There’s no “cure.” No medications that have been tested and found safe for women with HG and their unborn babies. Even one case of a mother having to choose to terminate her pregnancy to save her own life due to negligence and ineffective health care treatment would be one too many. Sadly, there are far more than that. A truly depressing number. I am lucky that I had the opportunity to switch obstetricians so that I wouldn’t have to face that pressure. I certainly thought I was going to die, right along with my unborn baby, under the care of my first OB. But by week 16 I was being treated by a better one. I had access to steroids, which kept the vomiting at bay. I could ingest food and liquid again.

Still, even with those advances, I saw how precarious my position was. We would try to taper the steroid dose, and I would get much worse. Walking from the bedroom to the kitchen was too much work, and left me shaky and weak for hours. I was scared to take a shower, knowing as I did how much of my careful energy stores would be sapped. How much worse I would be the next day, because any “extra” stress would require days to recover from.

Then, consider the psychological ramifications. Take away the constant fear of the imminent possibility of death. Now you’re left with a body too weak to do anything, but a mind that is suddenly free to think and feel and understand the long-term ramifications of this illness. I missed work. I missed my friends. I missed being able to clean my own house, and kiss my husband without feeling like throwing up. I missed sex and the outdoors and grocery shopping and all of it. I missed being a functioning member of society. I missed making my customers happy, and feeling that inner glow when I knew my coworkers appreciated me because I was helpful and useful. I missed lazy Saturday mornings with my husband, when food wasn’t a volatile topic and I could help him cook and we could talk about the future.

My future looked completely different, in every possible way. There was no going back. I realized it, the Saturday of week 16 of the pregnancy. I could NEVER go back to my life before HG. It’s a powerful thing, and it split my life in a very powerful way. There was the person I was before I had HG, and there was the person I was after it. HG breaks you down so much. It shatters your soul and then steps on the shards, so that all you’re left with is dust and maybe, just maybe, two or three pieces of glitter. Facing that was terrifying, especially because there doesn’t seem to be any way to make anything from just dust. You need a frame, or glue, or a kiln, or something. I just had dust.

So, I had no idea who the “post-HG ME” was. Would she resemble the prior-HG me at all? Would she be bitter and jealous, robbed of so many months of her life, robbed of the “joys of pregnancy” that 99% of pregnant women were allowed to experience? Would she have a complete breakdown at the merest sign of nausea post-pregnancy, fearing that it was starting all over again? Would she be able to function at all? Even more important than that, would she resent her child, as the instrument that brought about this colossal change?

It seemed to me like I had two choices. I could terminate the pregnancy, effectively ending my HG then and there, and then try to work with the dust and see what I could make. OR, I could decide once and for all to see the entire pregnancy through, come what may, and see if there was even the tiniest speck of dust left at the end of it from which to begin again. Two terrifying options. One big judgmental society and a family who would disown me if I went with termination. No child to show for the weeks of HG, and the fear that given enough years I would “forget” enough to want to try again, and would undoubtedly get recurrent HG, causing all the same pain over again. Except dealing with HG a second time has got to be more nerve-wracking, because you can’t ever believe your idiot doctor when he says it’ll be better by week 12, because you know it won’t. And the big question: could I live with myself afterward, knowing that I had chosen to terminate a baby that we had planned for, a baby we wanted, a child conceived in love?

Equally scary, the other option involved another permanent change to my life. A real live child, who I would have to care for and change the entire structure of my life for. It had already completely taken over my body, so that it wasn’t my own anymore. That would keep happening, at least all the way through breastfeeding. And human children are so dependent. They can’t do anything themselves, for a VERY long time. Did I want to be saddled with that, COULD I be saddled with that, with my soul so completely broken and crushed by HG?

You see, at this point, I had a realistic view of my strength. We all like to think the best of ourselves. We all like to think that faced with adversity we would be kind and compassionate and brave and loving. Then I got HG, and realized just how weak I really am. How little, relatively speaking, it actually took to bring me to the point where I lay on the bathroom floor and wished for a spontaneous miscarriage. Where I questioned the sanity of my pre-HG self in wanting to be pregnant at all. Where I thought about getting rid of the child, and whether or not that would also doom my marriage because of how much my husband has always wanted a kid.

We spent that entire day crying and talking and talking and crying. I won’t say what my husband’s stance was in all this, because it’s his decision whether to share that with the world. He’s good at communicating with me, though, and loving and supporting me. Even though it was very much up to the both of us, there was still a tiny percentage of the choice that was entirely my own. My body, my choice. I had the majority vote, by the smallest margin.

I did a tarot reading, hoping to get some guidance. I was at my wit’s end, and I would make a final decision that day, so help me, because having to deal with the possibility that you can choose to make things better, that you can choose to make the HG go away at any time, it drives you insane. It’s already insane, being that sick and choosing to let it continue when a certain remedy is at hand. You just have to decide if the kid is worth it. And you have to decide that before you’ve had the chance to MEET the kid. Before you know anything about how they’ll turn out, who they’ll be.

The tarot cards were predictable. They indicated a pregnancy, and a time of choice. They indicated that there were two paths, and that either one of them had the potential to give me opportunities for immense growth. The Death card took prominence, signaling a Transformation. The only clear message: whatever you choose, you will be transformed. No actual hints as to which was the better choice, or which one would result in less heartache or pain or mental instability.

I could see how much I hated being dependent on other people for my survival. My husband was doing everything for me, taking over all the household responsibilities that were usually mine, in addition to everything else he normally managed for us. He was even filling out my disability paperwork, because I couldn’t be relied on to be healthy enough to keep up with deadlines on anything. What if I was just as helpless after the baby was born, after HG had officially left the picture? What if I was so run down that I still couldn’t function? Would I succumb to my recurring depression, made all the more intense because it coincided with postpartum changes in my life? Would I be at all fit to be a mother and primary caretaker to this new, helpless infant?

I still don’t know the answers to those questions. What I do know is that eventually, after hours of tears and conversations and being completely 100% ON THE FENCE, something finally clicked.

I remembered how happy we were when we decided to start trying for this baby. That happiness, and expectation, and joy, deserved something. Prior to getting pregnant, I was a strong, independent woman. I had spent years building up my emotional intelligence, my spiritual well being, my head and heart and soul. Now, cast adrift by the HG into a vast sea with no stars to guide me, I still needed to honor the person I had been. I needed to trust the woman who had been so blissful at the start of this new adventure with her partner.

It felt like an absolute leap of faith. I still feel suspended in that abyss, waiting to see where and how I land. It wasn’t the easier or better choice, it was just what I had to do. When you’re completely broken and don’t know how to function, sometimes you have to try to function like you would if you weren’t broken. It was all I had. Grasping at straws, and hoping that I could fake it until it felt real or right again.

Now, in week 21, I don’t know if I feel real or right yet. After a month of trying to taper the steroids, I’m finally completely off them. I can eat and drink enough to keep myself out of the hospital, though the nausea still threatens me minute to minute. I still get worse if I exert myself, and every day I live in fear that I’ll completely relapse and have to survive the dark times again. I don’t know if I’m strong enough to pull through it all again.

Making the decision gave me a small amount of relief, because I was finally free of indecision. Once you realize that you HAVE to keep surviving, you can spend more time figuring out how to do that. Still, I don’t feel like the happiness and purpose in life flooded right back in, after making that decision. Every day is a struggle, every little thing takes energy and willpower that I am never sure I actually have. The ground is still unstable beneath my feet, even if I’ve chosen to walk on it instead of laying down and giving up.

I think people who struggle with suicide can understand this sort of daily battle really well. I know that it feels similar to the times when I’ve struggled with suicidal thoughts. It can be the hardest thing in the world, putting one foot in front of the other when that choice to end it all constantly hovers over you. The fear is paralyzing, and escape seems like such a sweet option.

I’m still just gathering up the dust, on the other side of the big decision. Wondering if I can make anything out of it, or if it’s possible to try to make something out of nothing, so that I can ignore the dust entirely. I am forever changed. I will never again be the person I was before the HG. I have to live with the knowledge, every day, that all it took was one debilitating illness to make me contemplate things I never would have thought myself capable of. I feel the baby move, and I get irritated because it makes me more nauseous. I hesitate to tell anyone that any of the symptoms are getting better, because no one seems to realize that a tiny bit better means I’m still very, very ill and weak. I was all the way at the bottom of the health hill, surviving by inches. Climbing back up is slow, and tedious, and I’m not very good at it yet. The HG still threatens to take over again at any time anyway, making itself known with the nausea and food aversions and lack of appetite. I wonder if I will ever have a healthy relationship with food again.

The only certainty I’ve come away with, after that dark, dark day, is that every woman with HG has to make up her own mind. I carry no judgment for the women who will go through this and choose to terminate. I understand that decision. If I could talk to them, I would say that they know what is right for them. That no one else can make that decision for them. And then I would want to hug them, and tell them that I love them. That no one deserves the pain of facing that decision. That they are beautiful, and strong, no matter what they decide. When HG is involved, there really isn’t a right answer. Any answer at all is wrong, because HG is wrong. It shouldn’t happen to us. We shouldn’t have to endure it. We don’t even know what causes it, which means we’re miles away from a cure.

To all the women out there suffering with HG, I feel your pain. You aren’t alone. I love you, and I hope that someone is taking good care of you. I hope that you are able to come back from it, someday, to rebuild what the illness tears down. Keep surviving.


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

 

 

Hospital Visit #4

My husband was home for the weekend, having driven up from LA straight after work. Four hours on the road, and then he gets to take care of me, changing the sheets, seeing if I want my one bath per week, trying not to sit on the bed because it jostles me and makes the nausea worse. He helped me shoot up my IV meds—zofran and Benadryl, and was getting ready to help switch out my TPN bag and tubing, something we had to do every 24 hours because I needed constant nutrition.

He went to do the dishes, and that’s when the chills started. I was curiously not nauseous, for the first time in a long while, but my body was shaking so violently I don’t know that I would have been able to feel the nausea over all the tenseness of my muscles. My skin was hot to the touch but I needed all the covers.

We pulled out the thermometer. 100.13. Could be nothing. To be safe, we called the home health nurse line. “Don’t take any chances, with pregnancy. Go to the emergency room.” We changed my clothes—foregoing a bra because underwire pressing on my growing belly made the nausea worse. Threw on a robe. Didn’t have the energy to do anything with my week-long tangled mass of hair. I hugged my little trash can, mindful not to vomit on any bit of my husband’s nice car.

This time we had to make a difficult choice. If something was seriously wrong, we were safer going to the hospital that was 10 minutes away. Where we knew all three OBs, and knew that none of them had experience or patience with my hyperemesis gravidarum. Or we could go to the hospital 40 minutes away, taking a chance on a brand new doctor who had only just agreed to try to treat me after we transferred my medical records to his office the day before (we had not met him yet, only knew that he listed “high-risk OB” under his specialties).

We took the risk that I wasn’t going to die immediately. I would have driven hours out of the way if I thought I had a chance of getting a doctor who didn’t just keeping saying there was nothing more he could do as I wasted away, potentially harming my baby with repeated and prolonged descents into dehydration.

We got a bed by 2 am or so. They shot me up with more zofran and Benedryl, and pumped in two liters of fluids. They were busy, or understaffed, or something. I was ignored a lot of the time. My temperature was down to 99.7, and they weren’t concerned (never mind that my normal hypothyroid self usually clocks in around 96-97).

I sent my hubby to sleep in the car, because at least one of us should be getting some rest. The ER doctor came in a few hours later and said, “Okay, well, looks like we can let you go home.” Never mind that the nausea hadn’t abated at all, that I was still throwing up, and that I’d come in with a fever. I very respectfully said that if he sent me home like this I would be back in a day, two at the most. I knew I wasn’t back up to the level of “maintaining” the misery at home. He heard me (thank the gods) and got on the phone with my new, unmet doctor.

It took another couple hours, but he finally came back and said maybe they should really check for the possibility of infection in my PICC line, because a good 60% of PICC lines develop complications like that.

Around 8 am they moved me to a room on the floor with the more intensive-needs patients. Fall risks, people who needed to be watched closely. My roomie was a college freshman, her mom sleeping on a cot in the room. Sure, the other hospital would have put me up on the Labor & Delivery floor so that I wasn’t getting sick from anyone nearby—but maybe this new doctor would be worth it.

What followed was an entire week of different treatments, just trying to get me back to some semblance of okay.

The blood cultures said yes, the PICC line was definitely infected. They switched my antibiotics twice, finally settled on one that would directly attack the particular kind of bacterial staph infection I had. The antibiotics helped get rid of a UTI that I felt coming on—small wonder, with my body so dehydrated and inept at flushing out toxins.

Curiously, it took almost a full day from the time we had confirmation of the infection to when they actually pulled the PICC line out. I wasn’t in any shape to be arguing, but I did worry through the haze of nausea and continued vomiting that maybe it should have happened sooner.

Even fully hydrated and with my potassium replenished, I was still vomiting quite often.

Some questionable things happened, maybe not due to negligence, but just the sheer number of different nurses I had over the span of that week. We are all human, and make mistakes. I was at least lucky that none of the nurses were intentionally cruel or negligent to me.

You never want to insult a professional by telling them how to do their job. But I had to remind a surprising number of nurses to push my IV meds in slow. When straight zofran hits your system all at once (pushed straight in an 8 mg dose), you get the most horrible taste in your mouth and feel like if your organs could move on their own they would all jump straight up your throat at once. For something that normally stops the urge to vomit, it was startling for it to make me feel like I was being turned inside-out. IV Benadryl is pretty caustic to veins, so you have to push it slowly and you really should dilute it in a saline flush. Some nurses couldn’t be bothered with that, and 25 mg of Benadryl hitting your system at once makes the entire world spin and you feel like you might faint. With those two, plus my antibiotics and the solumedrol steroids we were trying, my IV thyroid medication plus the PPN and lipids and vitamins in those—it was pretty important to flush the line with saline in between meds. One nurse neglected to do that, caused a reaction in the line, and then I had to go a full 6 hours without meds because she couldn’t risk double-dosing me, even though I knew that I hadn’t gotten any of the meds. They also managed to overlook for a good four days that my PPN and meds should NOT be going into the same IV site. PPN is tough on veins, as were all the meds I was on. It’s now two weeks post-hospital as I write this, and I’m still waiting for a large and painful lump in that vein to subside.

Thanks to the fast-pushing and no-dilution action of many of the nurses, a vein on my other arm remains enlarged and painful to the touch. I told my husband I can recreate the burning feeling of getting IV meds just by pressing on that vein—though without the happy consequence of actual medication entering my body.

Without the PICC line my doctor wanted me on a feeding tube. PPN isn’t sustainable long-term, so I guess it made sense, except my vomiting was already subsiding thanks to the solumedrol. Getting a feeding tube put in when you already feel like vomiting every minute is, well, it just multiples the horror and discomfort. I’m supposed to accept it gracefully, because I and my child are still alive. It was just difficult to do so when a whole new pain began as soon as the tube was in.

I spent days trying to convince the nurses and doctors that it was a new and legitimate pain, that something was wrong. I imagine it felt something like if you had a nice, open ulcer in your stomach lining, and the metal bit at the tip of the feeding tube found it and decided to sit there and rub against the lacerated bits constantly. I can’t prove that to be the case, but suffice it to say feeding tubes aren’t supposed to cause that kind of abdominal pain, and I couldn’t decide whether the pain or the nausea was worse to live with.

Finally the solumedrol helped enough that I started forcing myself to keep down yogurt and ice cream. I took careful note of how much I ate and drank, to prove to the nutritionist that I would do absolutely anything to get the feeding tube out.

After a few days (and curiously only about four hours of actual use as a feeding method, because they still had the PPN running), I finally got the tube out and my stomach pain subsided.

I had to stay until they had run a full five days of the correct IV antibiotic, but I needed that time for the solumedrol to really do its work anyway. I got sent home with a prednisone taper, zofran, benedryl, prilosec, and my trusty thyroid meds.

We aren’t over the hump yet. Tomorrow is week 17, and only 50% of women with HG see a lessening of severity some time between weeks 16-24. Tapering the steroids brought me back to “just as bad as before,” so we had to increase my dose for now. Every week I wonder when my doctor will have to put his foot down and say we have to stop the steroids, no matter how bad I relapse. I guess prolonged steroid use is harder on a body than feeding tubes, dehydration, and constant vomiting, though I find that hard to believe.

Every month of sickness with HG typically takes 1-2 months of recovery time, and I’m not even in the recovery phase yet. I miss going to work and being part of my team. I miss being self-sufficient, able to cook and clean and launder for myself. I miss being a normal wife, sharing responsibilities and not having to demand so much from my nonetheless loving and willing husband.

I don’t know if I will have to go back for another hospital stay. So much depends on how long this lasts and how long my doctor lets me stay on the steroids (the ones my previous doctor said he would never ever prescribe to me, because I think he’s scared of lawsuits even though we know the steroids won’t hurt the baby as long as they happen after ~week 10-12 of the pregnancy).

At the very least, even facing the possibility of another feeding tube and maybe six more months of this torture, I now have a doctor who cares about me. He will not let me or my baby die. He has experience with treating HG, and he keeps up with the current research. He made it so that this struggle no longer contains a strong possibility of my death (along with baby, because baby is too young to survive alone yet).

The psychological toll is still mounting, but it does help to finally have a doctor I can trust.


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

 

 

My Early Weeks with Hyperemesis Gravidarum

This is the second in a series of posts I wrote (by hand, to be posted online at a later date) during my time with hyperemesis gravidarum.


The nausea started in week six. I had a great review at work, making me even more proud of my time and contributions there. I told my coworkers about the pregnancy, and everyone was super happy about it.

By the end of the week, I wasn’t eating much. I had an incredibly difficult time at the company barbecue, trying not to toss my cookies. It was a total shame, too, because the CEO’s wife is an awesome cook.

By the next week I was too sick to drive to work. It isn’t really safe to be on the freeway when you keep throwing up. It didn’t take long for that first ER visit for dehydration. They hydrated me, shot me up with some anti-nausea meds, and sent me home. The next three times I went to the ER, I got admitted to the hospital. When you vomit enough, it takes more than a few liters of IV fluids to get you back to “surviving.”

My life became a waiting game. See how long I can last between hospital visits, always rushed to the ER after two weeks of increasingly more serious dehydration. Hair an unwashed rat’s nest, small trash can clutched like a lifeline in my lap as they wheeled me to my ER bed.

It was a constant battle with my doctor, unfortunately. Thanks to the online resources at www.helpher.org, I knew that some women were able to get through HG without killing themselves or their baby. But every day was an emotional struggle for me. My doctor quite frankly did NOT know what he was doing.

This is what most of our conversations were like:

Me: “The zofran isn’t helping as much. I think I need more of it. I know I can take up to 32 mg a day. And I want the Benadryl. I felt best after that ER visit when they had me on both.”

Dr: “Let me go look something up.” *Leaves*

Dr: *comes back 15 minutes later after we hear him seeing to other patients through the paper-thin walls* “I don’t even want you on the zofran. And taking zofran and Benadryl together can cause heart complications.” [I haven’t been able to find where he got THAT information, in all my research.] “Let’s try Reglan.”

Me: “We already did. Remember? I had really bad side effects and it didn’t help the nausea or vomiting at all.”

…And so on. One memorable visit he even left the room to call the perinatologist in a nearby city (ours is a fairly small town). Not only did she say that he was doing everything she would do (when I was only on about 12 mg of zofran a day, mind you), but her only suggestion was to add in psychotherapy treatment. As if my husband wasn’t already having to take days off work just to drag my vomiting carcass to these asinine useless doctor appointments. No, let’s add insult to injury and ask me to take my unwashed self to a THERAPIST because maybe it’s all in my head. Normal pregnant women aren’t this much trouble.

And that, my friends, was the crux of the matter. Only ~1% of pregnant women get HG. Of that 1%, everyone has a different level of severity. This normal obstetrician in small-town Paso Robles said he hadn’t seen anyone as sick during their pregnancy as me—in the last 20 YEARS. Unfortunately, rather than refer me to a perinatologist or even a high-risk OB, seeing as he didn’t have the experience or the expertise—my doctor instead chose to adopt the mantra, “it will pass soon.” Conventional wisdom says that morning sickness usually abates after the first trimester. Which would have been fine if I actually had morning sickness, instead of HG (they are really nothing alike. I promise you.).

Week Eight was when I stopped being able to keep down any food or liquid, I think. I would vomit it right back up. Weeks 9-11 I had a PICC line, administering IV meds to myself at home that sometimes managed to keep me from throwing up for a couple hours. I was on TPN, which is basically IV nutrition fed to you via bags of fluids, vitamins, and straight-up lipids. I had already lost 12 pounds from my pre-pregnancy weight. On the TPN we managed to maintain my weight. I kept slipping farther into dehydration every day, though. I shouldn’t have been—the pharmacist mixing my TPN was very good, and knew what he was doing. Unfortunately, pregnant bodies are unpredictable and unique. I could see my urine getting darker every day. I could tell I was vomiting more often (a happy side effect of dehydration is increasingly bad nausea and vomiting, go figure).

It makes a crazy kind of sense. When you are pregnant your blood volume increases a LOT. I could feel my heart pumping differently. You could easily see my heartbeat in my abdomen, strong enough to show through my shirt. Baby needs amniotic fluid, and that fluid is recycled and replaced by your body fairly often. As quick as every three hours, later on in a pregnancy. Obviously my body needed way more fluids, especially with all the persistent vomiting.

Finally I had a doctor appointment where my concerned and angry husband held my hand as I sobbed on the exam table. The doctor said, “Look, don’t you want to see your baby?” and I couldn’t force myself to look at the ultrasound screen. I cried, “No! I don’t want to see my baby because you make me feel like it has to be me or the baby!”

Looking back, that doesn’t make a lot of sense. I was under considerable distress. The struggle for all HG women is of course not as simple as “me or the baby.” I think many of us would be grateful if it was. There are plenty of moments I would have gladly given up my life (and ended my own suffering) if it meant my baby would be just fine. But up until 24 weeks, your baby has zero chance of surviving outside your body. So the struggle is really between mom & baby vs. Just-mom. There is a staggering number of HG women who are forced to make that choice due to inadequate, uninformed, negligent health care. Doctors who tell you “it will pass soon” when you are in week ten, and most women with HG don’t start to feel any relief (if they ever do) until week 20. Nurses and office staff who treat you like a spoiled drama queen vying for attention, because normal pregnant women are never this difficult. Volunteers with your health insurance company who promise to be your “advocate” and then spend a half hour of your depleted energy resources lecturing you on how exactly you are DAMAGING your unborn baby because you are unable to keep your prenatal vitamins down. Even well-meaning friends and family, saying things like, “Oh gosh, I had that too, I couldn’t eat anything except for (fill in the blank) for a few weeks.” (Nope, sorry, if you could keep ANYTHING down at all then you do not know how bad I had it. And don’t you dare try to tell me how horrible it was to be nauseous for months even though you never actually threw up. HG women have the pleasure of vomiting blood—regularly. We tear holes in our esophagus. Dislocate ribs from the heaving. And deal with thousands of dollars of dental work because our poor teeth are not resistant to constant bathing in stomach acid.)

Of course, when you’re that sick, you don’t have the energy to help the people you love see how they might be able to help or comfort you in better ways. You just have to lie in a dark room (because lights make you nauseous) with the cat locked out (because if he jostles the bed you’ll puke), with no sounds (because they also make you vomit), forbidding anyone from cooking anything ever in the house (because you can smell things from a mile away and ANY smell makes you throw up), just trying to remind yourself that everyone means well and it’s the thought that counts. It’s a good recipe for producing a very bitter pregnant woman, at least in my case.

Well-wishers tend to have the wrong focus, too, while we’re on the subject. They might ask how things are going, and you might tell them you had to up your meds again and might have to be admitted to the hospital again. And so often, they immediately come back with, “but how’s the baby?” There’s a couple problems with this. Some HG moms might be dealing with a DAILY struggle of trying not to resent their unborn fetus for ripping away their life and their very health and survival. We are strong, but devastating illness takes a huge toll on the psyche. Every single one of us is aware of the possibility of a complete cessation of our misery, with a quick 100% recovery, if we were to choose a “therapeutic termination.” Some doctors even force their patients into one, unaware that there are so many other things to try to get an HG mom and her baby through the entirety of a pregnancy. No one with HG (barring other complications) should medically HAVE to terminate. But many do. And some days, only the stories of how tortured and regretful they are, ten years or more later, kept me from telling my husband that we also needed to give up, and put my sanity before our desire for a child.

So when someone shows more concern for the fetus than the obviously struggling mother, she can feel belittled. Every single day, every single MINUTE is a struggle. And she’s still here, still fighting. Sometimes a little recognition for that, for how strong she is and how much willpower it must take to just keep going, would be great.

The other problem of course is that HG babies are hearty things. The root of the entire issue is really that this little growing bundle of cells is SO HEALTHY that it makes mom uber sick. The HG baby is a supremely effective parasite. They have lower rates of miscarriage, and so long as dehydration is effectively treated and hopefully avoided the farther along the pregnancy is, they even end up averaging with higher birth weights. They soak up all the nutrients they need from mom before mom’s body even has a chance to say “wait, what about me?” So no, I’m not worried about my kid. That little one is sending such strong hormonal signals to my body to give up everything it has to support that growing bundle that it makes me deathly ill. I don’t know if Charlotte Bronte, dying in her fourth month of an HG pregnancy, knew that her baby was essentially killing her by being too good at growing. It seems flawed, of course, for a parasite to take so much from the host that the host actually dies before the parasite can survive on its own. But then, what do I know about the evolutionary need for HG?

What I do know is what HG is like. The toll it takes on the mother, emotionally and physically. And I know that every time someone asks “but how is the baby?” a small voice in my head says, “who the hell cares?”

A shocking confession, maybe, for an expectant mother. But you don’t get to judge unless you’ve been here. You don’t get to tell me I’m ungrateful until you, also, experience this. The happy discussions after the wedding about when we wanted to start trying. The unparalleled joy and closeness when we decided to stop waiting for everyone else’s reasons and start trying because we knew it was the right time. The sense of adventure when you’re tracking temperatures and marking calendars. That first faint positive pregnancy test, when you don’t know how you can possibly wait one more day to test again. The conversations planning the rest of your life with this wonderful, forever change.

And then the sickness. Sapping your strength, your resolve. Knowing in the slightly better moments that you would NEVER choose to abort a child that you had made with the love of your life. Not even having the strength in the bad moments to feel appalled at how much you wished for a random miscarriage, to take this awful looming choice out of your hands. Watching your husband’s face day after day, as he realizes that he might very well have to choose between the child he’s always wanted and the sanity of his beloved life partner.

Other moms get to plan registries, and “nest,” and spend nine months hoping they are eating the right kinds of healthy foods to support their baby. They get to share ultrasound pictures, sock away money from being able to work during most of the pregnancy. They have nine months to prepare their hearts and minds and environment for this new life.

HG robs us of that. We HG moms often miss out entirely on the “joys of pregnancy.” We don’t know what normal pregnancy is like. The first time I felt the fluttering that was definitely the baby moving, I learned to resent it because it made me MORE nauseous. No joke. I miss my life. I miss working, and being a contributing member of a team. I miss game nights with our friends. I miss that uncomplicated certainty that we wanted a child and were happy to be pregnant. I miss my health, my appetite, my gym time with friends. I miss the person I was able to be before all this. A lot of HG moms end up with anxiety issues and complex PTSD. Thanks to a healthy knowledge of self, I can already feel it taking effect. I will never be the same. I will always have to live with the knowledge that I wished to end my own suffering, at the price of my child’s life.

I’m not really through the woods yet. With a new doctor and much better treatment, I can write this a tiny bit at a time and even walk between the kitchen, bathroom, bed, and couch. Huge improvements, all. But this is week 16. And the HG still has its claws firmly embedded in me. So I take it a day at a time. And hope with every fiber of my being two things: that I will be one of the women whose HG recedes ~week 20, and that I won’t have the dreaded third trimester relapse (yes, it’s a thing, and words cannot express how terrified I am of it).

Best of luck to all the other HG moms out there. I know your pain, and we are not alone. I love you and admire how strong you are. I don’t judge your thoughts or decisions. I hope for all our sakes they keep doing research and find better treatments. Maybe someday we’ll know why HG happens. Maybe someday.


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

 

 

I Can Only Drink Apple Juice

I wrote this at nine weeks pregnant, but was far too sick to be on the computer, posting things to the blog. I’m currently at 26 weeks, and nostalgic for the sense of purpose I still had at nine weeks. Debilitating illness breaks down your spirit. It forever changes you. This is the first post in a series on my experience with hyperemesis gravidarum.


I can only drink apple juice, now. I went from a liquid consumption of water, every single day, no fruit juices, no sodas—to only being able to drink apple juice. Pregnancy is strange that way. Even ginger ale, that lauded bestie of nauseous pregnant women everywhere, won’t stay down. Just apple juice.

Water is one of the most repulsive things now. Even a sip of it, and I immediately want to retch. One time I was so thirsty I drank down TWO FULL MOUTHFULS of water. Dehydration will do that to you. Except it came right back up within five minutes.

I’m nine weeks along, and I’ve been to the ER twice already. The second time, they admitted me to the hospital and wouldn’t let me leave until I hadn’t thrown up for a full 24 hours. I was there four days.

I have hyperemesis gravidarum, which is a fancy way of saying she-pukes-a-lot-while-pregnant. Dehydration is a serious risk for both me and my little embryo. Starvation for the little one? Not so much. Our little one is taking all the nutrients they need, before mommy even gets a slice of them. So while it’s important that we keep hydrated so that we don’t run into problems with low amniotic fluid later on, it isn’t very high of a priority for mommy to eat actual food.

This condition is talked about a lot more than it used to be, ever since Princess Kate’s pregnancies. Unfortunately, there are a lot of mothers out there who could have been saved the awful decision of terminating their pregnancies if we had more knowledge, and better care practices, for this debilitating condition. Personally, the thought of getting pregnant again after I have this little one is terrifying. And I have a rather moderate case of hyperemesis*, compared to the women who need to be on total parenteral support because they are unable to keep a single ounce of fluid or food down.

Do I regret getting pregnant? No. We made a conscious decision that we wouldn’t take back under any circumstances. Did I expect to have to go on short-term disability from work, when my baby is still the size of a pecan? Of course not. But it will be worth it, seven months from now.

Pregnancy does strange things to your body. I have to pee way more often, but there isn’t always that much to expel. Just a whiff of my own, salt-of-the-earth normal scent is enough to have me groping for deodorant like the elixir of life. My husband has to brush his teeth during the day now, and his flossing habits have improved tenfold. Just the thought of a toothbrush coming near my own mouth makes me feel queasy, and actual toothpaste makes me gag.

I don’t take the little things for granted anymore. Every time I successfully bathe myself (washing my hair and everything!) my husband gets a text saying “I took a shower!” My friends have stopped inviting me out for game nights or dinners, and instead text me things like “I made soup, can I bring some over for you?” or “Do you want me to come cook for you tonight?” I once had to ask one of them to come feed my cat, because I was incapable of getting across the apartment to do so. That was the day we went to the ER for the second time.

Even on anti-nausea meds, I have a constant underlying sense of dis-ease, like my balance is off. 24/7 queasiness is the name of the game. If I go a full ten minutes without feeling totally nauseous, I start to worry that we might be losing the baby, that my hormone levels are plummeting and it won’t be a viable pregnancy. Such is life, with hyperemesis.

I don’t know how to tell our kid, someday, that I was debilitatingly sick when I was pregnant, and that’s the primary reason they won’t ever get siblings. Is there a safe way to tell them that, without blaming them for making me feel so awful for so long? Because the truth is I wouldn’t take it back, and I don’t regret it. Not a nauseous-minute of it. And it is zero percent my kid’s fault. That little embryo is just fighting away for its own survival, doing whatever it can to grow and flourish in this difficult process of creation. I cling to those unstable statistics that say women with hyperemesis might be less likely to miscarry.

The bottom line in all this is really: this kid is already my number one priority. Anything I am going through is completely secondary. I still need to take care of myself, of course, but as long as that kid is alright, I can weather any storm I have to. It doesn’t make it fun, and I sure wish I could be squealing with excitement with all the other, non-nauseous pregnant women, but I also wouldn’t change my experience for the world. This is what it means for me to be pregnant. This is what it means for me to bring a baby into the world. Bring it on. *Knocks on wood*


*I wish I hadn’t gotten worse, but I eventually did need TPN via a PICC line, and while my HG has mostly subsided to the point where I’m no longer throwing up and am able to gain some weight back, I’m still not able to work a full-time schedule, and my strength is fairly nonexistent. And there’s always the third trimester relapse to fear. Yippee.


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