This blog has been a long time coming. I'm currently still in the midst of HG. I just haven't had the oomph to get into something that has been so difficult for me and is draining in every single way. However, I got a kick in the pants today to sit down and focus. I'd like to share a bit about my experience with HG, Hyperemesis Gravidarum.
What is Hyperemesis Gravidarum?
Unrelenting. Debilitating. Traumatic. Hyperemesis gravidarum (HG) is severe nausea and vomiting in pregnancy. It occurs in only 1% of pregnancies, so the majority of the population and most doctors have no idea what it is or what to do about it. It can set in 2- 5 weeks after conception. What it isn't is morning sickness in a normal pregnancy. Worse and different than food poisoning. HG is incurable, often undertreated, overlooked, and stigmatized. No one knows what causes it, although there are theories.
It follows no pattern. There's no way to know who will get it. Although it often runs in families. You can be young, older, pregnant with either gender, healthy, unhealthy, thin, fat, any race, doesn't matter. HG doesn't discriminate. You can have a "normal" textbook pregnancy and the next one get HG. You can have it once in one pregnancy and not in other pregnancies, or you can get it again and again, sometimes worse than the previous HG pregnancy. It doesn't even follow a pattern day to day when you're battling it. Some days are ok, good even ( typically once you're on fluids and meds), or total hell. I'll say there are far more bad days than not, and even on a good day you're bound to be battling aversions or nausea or fatigue. This is HG.
You lose weight or don't gain weight, but some women still gain weight, even without eating and constantly puking. There aren't safe foods or drinks, it's a guessing game day to day. What you could eat one day you can't eat again. Smells are off. Nothing tastes the way it should. You either have too much saliva or not enough. Puking into the bathroom sink while brushing your teeth, unable to tolerate the brush in your mouth or the taste of toothpaste, mouthwash, or even the taste of your toothbrush. You lose control of your bodily functions while throwing up often peeing and crapping on yourself. Bloody noses from throwing up so hard. Passing out from throwing up so hard. Throwing up acid, bile, and blood because there's nothing else left to puke up. Cursing into the toilet between vomiting spells, crying, collapsing onto the cold bathroom floor. Social isolation. Exhaustion. Bed rest. Muscle loss. This is HG.
HG can cause severe dehydration, organ failure, ketosis, malnourishment, decay and loss of teeth, and metabolic imbalances, and some babies don't get enough water to survive in. Even in the past recent decades there were women dying from it, because they were told it's all in their heads. Still today, in 2019 we're still told it's all in our head by some providers. This is HG.
This is not morning sickness. This is not the "princess disease." Which by the way she's a duchess. Not sure what I'm referring to? Duchess Kate suffered with HG, and it made headlines. Comedian Amy Schumer suffered with HG. That made headlines. My heart goes out to both women and all women with this illness. It should make headlines and be talked about. But it isn't a trend or the popular thing to do or have. And it's always been around.
This is my third pregnancy and my second with HG. My first pregnancy was 16 years ago with my son and it was so easy ( pic of us in 2004). I had no idea how hard pregnancy could be. Sure I got tired, and had a little discomfort in my growing belly. I had a cesarean because he was transverse and wouldn't turn. I threw up all of 2, maybe 3x with him. Once after taking some vitamins before I knew I was pregnant. The second time after eating some food at Chicago Connection, and the third time because I had a cold and stomach bug in February that year. I didn't have HG. I didn't even get morning sickness. A twinge of nausea, and I mean a twinge in the first couple weeks after discovering I was pregnant. It was like, " aw, how cute. I feel a little nausea." I didn't even need a saltine. I worked 12 hour days on my feet as a server at the Olive Garden. I walked a couple miles to work and back most days. I went swimming a couple times a week.
Fast forward 12 years to 2015. My son now 12. Recently married to my long time partner of 9 years at that point. We immediately tried for a baby. Bam, pregnant with the first attempt. I was elated, over the moon. I had wanted that second pregnancy for 10 years. For 10 years I kept saying I know I have a little girl just waiting for me. I was in tears full of joy to learn I was pregnant. Within a week of finding out I was absolutely, terribly ill. However I had never heard of HG and assumed I was having morning sickness. Which by the way is so misleading in itself. Morning sickness happens at any time.
I knew before I got pregnant with my daughter that I didn't want another hospital experience if I could help it. I wanted to be with midwives and in my home or a birth center for my birthing time ( labor and delivery). I didn't want an OB or anything overly clinical. I wanted to have a natural, "normal" experience. I say "normal" because normal can be so subjective. I just knew I didn't want to give birth in a hospital again. I adored my midwives from the first meeting. They were kind, loving, experienced, and intelligent. I felt totally safe and trusting of them. I mentioned at my first appointment that I wasn't feeling well and was told to try Unisom and b6. I'll get to that in a bit in more detail. I gave it a shot and it helped to take the edge off a bit, but I was still really sick. I did keep down some food and fluids, so I never had to make a hospital trip. I was gaining weight. My midwife said it sounded like I had HG, and she explained briefly what it was. I looked it up and was filled with anxiety. The meds, the side effects, hospital visits. I didn't want anything to do with it. So I kept popping Unisom and B6, sleeping away the first 16 weeks of my pregnancy. Crying, puking, feeling weak. Staying dehydrated, and not digging further into what HG was because I was scared. At 18 weeks HG ws totally 100% gone. Boom, just like that I felt like crap all that time, then gone. I was so thankful. But that pregnancy wasn't done throwing me around yet. That's a story for another time. I do think though, looking back, knowing what I know now, that having HG and probably letting it slide too much and too scared to treat it further, that it worsened things that were to come.
These photos I took of myself were just a couple days prior to my daughter's birth. I was depressed, anxious, and out of patience, crying all the time from having such a difficult pregnancy. I just wanted it to be over.
My birth experience didn't go as I had hoped. I ended up transferred to an OB, luckily a really good one, and one week before I had my daughter she took me into her care, and I had yet another cesarean.
My husband and I had talked about wanting two children close in age. My son was so much older and i knew I didn't want our daughter to grow up as an only kid like my son. So there was talk, but after my pregnancy and having another c section, I was just filled with trauma, anxiety, and no desire to get pregnant again. I was scared. So I put it off. Knowing I really wanted to have one more child, feeling it deep down, feeling like I had one more girl waiting in the wings. I kept talking it over with my husband time to time, both of us wanting to, but I just couldn't give the go ahead. He was totally understanding. He took care of me with my pregnancy with our daughter, and saw what I went through. There was a lot of talk about adoption. I just couldn't get past the conflict in my heart about the trauma I faced with our daughter and the desire for another kid. I felt stupid for even thinking about going through another pregnancy. I felt selfish for wanting to have my own child and not adopt. In the same breath I loved the idea of adopting too.
May of this year came along, and at the last minute just before my ovulation phase started I said, " let's just do this. One time. One shot. If I get pregnant, I get pregnant. If not, we adopt." My husband chuckled a bit and siad, " ok babe, whatever you want to do." I told him this time if I get sick again I would do whatever it takes to survive HG and anything else thrown my way during pregnancy. I wasn't going to put my head in the sand. I wasn't going to let fear stop me from doing what I needed to do. I made peace with that. Knowing I may not have the experience I wanted for so long to just have a regular pregnancy, healthy, vaginal birth, with midwives, and in a home environment. That's ok. This time I wouldn't place any expectations. I gave myself grace and understanding, because if I didn't I knew it would devastate me.
Sure enough by 11 dpo I was nauseous.. I was nervous HG was starting. I had nausea building up for 4 days until I started bleeding. I bled for a week, unsure if I was miscarrying, and told that perhaps I might need to be ready to hear that. How the hell does anyone prepare to hear that? I don't know. It was breaking my heart that week, but then I got good news that my HCG levels kept going up. My blood tests were confirming it.
Pics from my two ER visits in one week in July this year.
Two days after getting that news HG kicked in hard and fast. Like an evil monster lurking and waiting for the perfect moment to pounce. Just when I thought ok, I can be happy and move forward, boom, HG says, nuh uh, time to fight. HG came on harder, faster, and with more than my last pregnancy. This is when I learned real fast that HG has a spectrum.
June 30 I went in to the ER for my first round of fluids. I was shaken up. I couldn't stop puking. I was vomiting all day, and in the two hours before going to the hospital I threw up 18 times alone. 18 times in two hours. I had been puking for 14 days straight. I had aversions to everything. I couldn't handle any smells. I couldn't eat or drink. I could barely pee. I couldn't take it. This is where I had to remind myself of the peace I made to accept what comes and get help.
My husband drove me to the ER. Tears rolling down my cheeks. Anxiety setting in. This was how my pregnancy was going to go and I was overtaken with grief and sadness. I was hooked up to two bags of fluids and put on IV Zofran and Phenergan. Mom guilt set in. What happens to my baby? Still so little and developing, only a few weeks along. What will this medicine do?
With reassurance from nurses and doctors I took the meds. I wanted them. I desperately wanted anything to make it stop. But it's hell not knowing if this is the thing you do that fucks up your kid. And soon after the meds were given I started to feel better. I perked up. I wanted ice chips, and I felt hungry. Actual hunger pains. So they brought me saltines. Nothing was ever so good as those ice chips were though at that moment.
That one day I thought I could face getting out of the house for a drive to the mountains. Only to puke all over in gas stations along the way. My husband hooked me up to my IV in the car. It was great to just get out though. 8/3/19
To skip along and spare a long winded story. I had three more ER visits in the couple weeks following. Then I was put on a peripheral IV for about a week. My veins kept blowing because I was too dehydrated. It was taking 7-10 hours for one bag of fluid to empty into me. My doctor ordered a picc line to be put in.
To sum it up the last 18 weeks that I've been pregnant I have been severely sick for 14 of those weeks, since it started at about 4 weeks after ovulation, which I don't know, do the math, two weeks after conception? Doesn't' matter, long enough. For three months I could barely eat. There were weeks I went totally without eating. I still cannot get fluids down or keep them down. I still have aversions and problems with smells. I've dealt with cabin fever and isolation. Depression, anxiety, anger, sadness, hopelessness. Some days I can barely get out of bed I'm so sick and so fatigued.
For the first 2.5 months I needed help with everything and could do nothing for anyone else. I couldn't get in a car without puking. I slept a ton. I still puke till I pee myself and my nose bleeds. I have side effects from the meds. I have major mom guilt. My teeth hurt and a couple are showing signs of decay so I am seeing my dentist next week, because my mouth and face is in pain from those teeth. I've puked up acid, bile, blood. My esophagus has been painfully raw. I've had times I couldn't talk, because it made the vomiting and nausea worse. I couldn't move because it made the vomiting and nausea worse, Just getting up to pee was too much.
I've bawled on the bathroom floor, reached out in support groups on Facebook, dealt with insensitive comments from people that don't understand it, I've lost weight, gained weight, not put weight on, gained back, lost again. I've been told I look like shit more than I can count. I've been told I don't look pregnant enough or even at all. I've been told I must be better because I wore makeup and "looked" better. I've dealt with much of what HG can hit a woman with, but I haven't been put on a feeding tube or hospitalized for which I'm grateful for.
As for the picc and fluids I'll get into that just below. Let's talk meds next.
One week's worth of meds, vitamins, and fluids.
The meds used to treat women with HG are used by chemo patients. Yes, read that again.
But first, here's how it goes.
Unisom and B6. That's the first go to. I haven't heard of a doc or midwife that doesn't advise this first. Insurance companies typically require it to be the first step before covering any other prescription meds. Especially if you are really in the early stages of pregnancy.
Then comes Phenergan, then Zofran, Benadryl, and Reglan. Diclegis, which is just a super outrageously expensive Unisom and b6 prescription version. Even with our insurance it was about $400 for one fill, so I declined. There was another one that I can' recall at the moment, it sounds like diamond something, not important right now. That one is essentially Dramamine. Antacids are prescribed too, because some like Zantac may help with nausea, and they help keep acid at bay.
Some women report having depression and suicidal thoughts being on Reglan. I passed on that. Phen made me so tired. It knocked my ass out cold. I couldn't stop sleeping. so that wasn't going to work with my 3 year old running around. Currently my doc is prescribing it rectally at night. We'll see how that goes as I haven't picked it up just yet from the pharmacy.
Zofran. This one has come with a lot of controversy over the years. In the end it's the one I've been on consistently, taking 4 dissolvable tabs in a day. I'm not even going to touch on the mess on the net about Zofran. Look it up if it strikes your curiosity.
Zofran side effects. Fuck. OMG. The migraines and severe constipation. I was impacted and constipated the first four weeks after starting it. I didn't have a bowel movement for 4 weeks straight. Nothing. Nada. Bet you wanted to know about my bowel habits. Well it comes with the territory of HG. It's referred to as having "Z poops" in the support groups among HG women. It causes massive constipation. Painful constipation. Constipation that leaves you crying on the toilet, sweating, bleeding, and texting your husband that you think you are going to die on the toilet while your toddler watches Frozen and he's at work. Put on a glove and lube a finger and dig shit out of your ass constipation, because nothing helps get it moving. Try taking Miralax and Milk of Magnesia with HG. Yeah that goes over really well, It comes right back up. At least for me. The only way I can have bowel movements now is to do enemas. I do two a week and cry every time for the last few months.
I still throw up with Zofran. But not near as much. It doesn't even scratch the surface of helping my debilitating nausea though. It's not really for nausea, but to basically tell my brain to stop puking and ends the signals coming through to puke. HG just says fine, instead of puking 40 plus times a day, we'll just puke a handful of times. Maybe 2, maybe 6, maybe 10 times, but it's less. I'll give it that.
I don't know the official count, but over the last 8 weeks I've had at least 168 doses of Zofran. I've been taking it since about week 6 or 7 of my pregnancy, so not sure how much exactly though.
HG Can Suck my PICC
A picc line is a thin, soft, long catheter that is inserted into a vein in your arm. It's about 18- 24 inches and goes up the arm and down toward the heart. but not into the heart. Mine was just removed this morning, Wednesday, Sept. 18. I had mine in for about 7 weeks.
It has been a lifeline to me. I felt almost like myself with it. It kept me hydrated. Hydration is key to helping battle HG. Dehydration is the Magneto to Charles Xavier, the archenemy to the woman suffering with HG.
It took a couple weeks, but with consistent fluids and vitamins via my PICC line I was getting some energy back, far less vomiting, and an appetite. Even the nausea was slightly less debilitating, though never gone. There's risks with a PICC line, clotting, infections, and it cannot get wet.
I took showers by keeping my Mighty Well PiCC cover on, just as I do all day, every day to protect it, then wrapping in cling wrap, then taping down a bread oer it with waterproof tape. I only took showers once a week, because it's a pain in the ass, and too risky to chance getting it wet. I had anxiety with every shower. The rest of the week I just used wet washcloths to wipe down. Let me tell you there's nothing like a shower when you feel like hell, and to wait it out once a week isn't great, but it is what it is. Of course HG at its worst I'd end up jsut puking in the shower, because I couldn't tolerate being in the shower. Luckily, that has happened less and less over time.
14 weeks, my bread bad and cling wrap method for showering with a picc line.
Anyways, my PICC line was a Godsend. I was nervous to get it. But once it was in it was so much better then having an IV in. Fluid flowed in well, and I got hydrated with a couple bags a day.
All in all over the course of about 8 weeks between my IV and PICC line I had
Still, getting the news caught me off guard, and I ended up bawling and having a serious amount of anxiety facing it coming out, because it really, truly feels like losing my only lifeline. The one things that gives me hope and helps me get through my days. It's like with HG you already don't have control over your body, and then when your doc says no more PICC line you also have no say over what happens to your body. It's a devastating place to be physically and emotionally.
I wasn't impressed with my doctor when she also mentioned that I just need to try harder to get fluids in, so my gut doesn't get lazy by bypassing it with the PICC line. I really like my dr. I do. I wouldn't change her to switch over to a different dr. She delivered my daughter and she was good to me then. But it hurt and felt demeaning to be told to try harder. I know she didn't mean any harm by saying it. But let's save that for the shit people say portion of this blog.
I'm thankful to my home health nurses. They took great care of me.
I just don't know what I'm going to do now. Back to the ER for fluids when I need them for starters. Back to getting sick a lot. Last Friday my dr wanted me off my hydration bags. I went three and half days without my fluid bags. I tried so hard to eat and drink, but threw up a bunch. I lost 5lbs, and couldn't hold anything in. So by Monday night I caved and hooked up to two bags. I felt better within a few hours and stopped throwing up. She still insisted it come out, so here I am today. Starting over without my PICC line.
Mental and Emotional Effects
There are some dark nights of the soul with HG. Personally I had days when I wished I had never decided to get pregnant again. I had ideas about abortion cross my mind, that I tried not to think about, but still it crossed my thoughts more than once and more than twice. It's something I'd never think about normally. I want this baby. I'm thankful to be able to have another child, but HG is a nightmare and it causes some thoughts to be dark. I hated myself for the times I even thought what if? Some women want abortions, some get them because of HG. I know I'm not alone in feeling this. Some women are downright angry as fuck because of an unplanned pregnancy resulting in HG again for them. It's something you'd never wish on anyone. I have no judgement towards any woman facing HG and what her thoughts and feelings are, because we're surviving in whatever way we can.
Depression, anger, and anxiety are very real side effects of HG. Not the cause of HG, but absolutely a byproduct of HG. This illness is traumatic, and a lot of women end up with PTSD from it and PPD.
We're in a population of 1% of women that get this illness. We have no idea why we got it or how. We suffer and the rest of the world doesn't get it, they don't understand it. More times than not our providers don't know what to do for us. Some providers treat women like crap. Some women don't have support. Some go through divorces during their HG pregnancy. It's a nightmare. I can't say it enough.
I started therapy a year before even considering getting pregnant again. I was so torn about it, so scared, and I'm continuing with therapy while I'm pregnant, because it helps to talk it out with someone.
I'm thankful for the support groups on Facebook that I've found this time around. It helps to be in a group of women that understand and know what you're going through.
This illness like many chronic illnesses can make a person lonely and isolated. I have had many days pass feeling this way. I hope all women going through this can find support through a spouse, family member, or friend.
Shit People Say
Get back to work.
This is normal.
Welcome to Motherhood, we all go through it.
It'll go away by the end of first trimester.
It's all in your head.
Stop complaining, you chose to be a mom.
Pick yourself up.
Good vibes only.
You're not eating the right foods.
You need to try this essential oil, vitamin, supplement, insert some MLM crap here.
Eat more carbs.
Eat more protein.
You're here in the ER for nausea and you're pregnant, um ok.
You don't look sick.
You look like shit.
You're gaining weight though
You look too small, are you sure baby is ok?
That medicine is going to cause your child birth defects!
I hope you aren't harming your baby by being sick.
Is this pregnancy really worth it?
Why'd you get pregnant again?
Are you sure you want to keep it?
You brought this on yourself.
Maybe it's because of your health problem, should you have gotten pregnant having that problem? ( insert autoimmune, fibromyalgia, or whatever here)
Let me tell you that all of this is bullshit.
None of it is helpful. It's blaming, demeaning, hurtful, and adds to the massive stress and guilt a woman with HG already has. America, increase your emotional IQ and get a clue.
Learn how to at least be sympathetic. This isn't the fault of the woman and it is a VERY REAL illness. This isn't normal. This isn't morning sickness. It's a debilitating and rare illness that strikes 1% of women. We're fighting it every single day. We're survivors and warriors. But we lose sight of that often in the midst of the day to day with this illness, so offer support or don't say anything at all if you can't follow the golden rule. Providers wake up. Take care of the women pleading for your help. Listen to them. Be kind, they may not have help or support anywhere else either.
This Doesn't Help
or anything else you want to suggest that might otherwise help a normal pregnancy with normal morning sickness
Listen to the woman with HG. Get her what she asks for. Exactly what she asks for. She is trying to listen to her body. Some days some things help, other days those things don't help at all. We aren't trying to be crazy or make the people around us crazy. We're trying to get through this the best we can. I don't care if she wants a Sourdough Jack three days in a row or can't eat for three days in a row. Just listen to what she needs and help her.
What Does Help?
Remember every woman is different. Every body, body, each body is different. HG is on a spectrum and can change day to day, pregnancy to pregnancy for each woman.
Be her advocate if she can't for herself. Far too many doctors don't understand HG and they don't listen to the women suffering with it.
Move on if you have a shitty dr.
Get hooked up to fluids if you need 'em. It's one the best things you can do to fight this illness.
It's okay to be angry. It's okay to grieve. It's okay to process how you need to through illness. Give yourself grace. This goes for the caretakers of women with HG too. Just don't take it out on each other. It's no one's fault.
Go here to learn more: http://www.hyperemesis.org/family/
My Husband and Kids
I love you. I love you guys so much. Thank you for being here for me through two pregnancies with HG. Thank you for being a shoulder to cry on, for the hugs, for helping me through long nights, and hooking me up to bags of fluids, and trips to the ER. Thanks for bearing through my moments of anger.
To my son. I'm sorry you have seen me through this twice now. I;m sorry when you were younger you were so scared I would die. That even now you still ask if I could. You don't deserve that kind of concern. Thank you for being a help to me and helping me keep the house up. I hope that someday you will be a strong man for your partner should you ever need to be there for them in a time of illness. Thanks for being playful and using your sass for good when we razz each other. We have our tough moments now that you're a teen, but we have good ones too. You have stepped up at times that made me so proud of you.
To my 3 year old daughter. You are the very definition of your name. You are light in this family. You have wowed me with your instincts and nurturing. From the very first time I threw up with this current pregnancy you were on my heels, immediately rubbing my back as I leaned over the toilet, pulling my hair back. How'd you know to do that? Saying to me over and over, "I love you, otay mommy, you otay." I love how you bring me blankets, toys, and books. I love how you have been there to hold my hand when nurses came over to put in IVs, and you wouldn't leave my side. You have such a fierce strength inside of you. I'm so sorry you have seen mommy cry and be so sick. I wish I could make it all go away. I wish that you never saw this kind of struggle so young. I wish I could protect you and only show you joy. You're so little. But you're so smart, so silly, so loving. I'm the luckiest mommy in the world to have you by my side. I'm glad we can hang out and watch cartoons when daddy and brother are away at work and school. You make it worthwhile to fight this even more.
To my husband. We have some days that are so stressful. We've been through so much. But you have been there for me. When the chips are down, you have my back. You have never made me feel poorly and guilty for being sick or for the financial burden of my illness. I can't say there are a lot of women out there with men that step up. You and I butt heads, and that happens under stress, but damn I can't imagine going through this without you. Of course I wouldn't be this way without you either lol, just teasing. You have seen me at my worst, and somehow you still love me and still tell me I'm sexy as hell in your eyes when all I feel like is a gross lump these days. Love is blind I suppose. hahaha. I'm sorry for the days I've been pissy and rude and feeling like shit and can't pull my head out of my ass. I try really hard to not let all this get the better of me most days, but some days I lose that battle. We're halfway through this, and then we get our last baby in our arms and can move forward. I don't know what's to come with the rest of this pregnancy or if it will be anything like the last aside from the HG, but I know with you I will get through it. Thank you for being by my side. I love you.
If you want to watch a video that covers a lot of this here ya go. I cover a lot in the blog, but sometimes a video is the way to go. You'll get the gist by the video. Fair warning, I am emotional talking through the video.