Breathe In, Breathe Out. My HG story

https://islandofgriefmountainofjoy.wordpress.com/2011/01/24/breath-in-breath-out/

My Inargural post. My story with HG

Breathe In, Breathe Out.Posted on January 24, 2011 by Island of Grief, Mountain of Joy

You are not alone (breathe in), You will go on (breathe out)

I am starting a blog.

I’ve thought about starting a blog for a long time.  Who would want to read my blog? Nobody. What can I give for advice? Nothing. What talent can I share? None.  But then in a midst of crisis it suddenly dawned on me, that I wasn’t taking my own advice.  I always have loved the quote attributed to theologian, Gustavo Guitierrez (in fact it’s my facebook quote) “those who change the course of history are not those who offer solutions, but those who pose entirely new sets of questions.”  I was asking the wrong questions of myself.  Why do I want to write? For me! Who do I want to share it with? Everybody. What can come of it? Healing.

So here I am. I will try to memorialize my triumph and devastation with this debilitating disease. A disease that has both given me much and has taken away much from me.

If you have never been through Hyperemesis (HG) or have never known someone with it is impossible to describe it.  It is like your worst hangover, on steroids, 24 hours a day, for the duration of a pregnancy.  It feels like you are dying (in fact, your body is slowly doing just that) and it is hard to care that you are dying, because you are so sick. It is isolating and depressing, both while you are going through it and afterwards.  Life without HG will never exist for me.

I promise my subsequent posts will not be this long.  This is my story (and it’s in a nutshell I swear)

I am 28 years old. I am the mother of three children. Two are joining me through this life. One waits to guide me in the next life.

I was pregnant at 21. I had a beautiful pregnancy, health wise. Emotional wise, it was up and down.  I was a single mom, I was right out of college, I was heartbroken but this story is not really about that time, although I could probably write a blog on that too.  6 years ago I gave birth, naturally and with 0ut any pain to a beautiful blue-eyed, porcelain skin and intelligent as a whip baby girl. I call her angelface, and that is what she is. She saved me in ways I didn’t know possible.

Fast forward.

I met my now husband.  (Daddy to ALL my children, biological father to two).  We were ready to expand our family. I was in my final year of Law school.  This was the perfect time. I loved being pregnant with my first, I had dreams of being a surrogate afterwards. Before we Conceived I ordered cute pregnancy shirts,  shirts that would announce to the world that I was pregnant, even when I didn’t have a belly yet, shirts that had political messages or witty things only law students would find funny on them.  I had no idea at the time, that I would never wear them. That I would be lucky if I got dressed at all. Lucky if I brushed my teeth. Lucky if I ever made it to class. Lucky if my belly ever would begin to show.

Saying I was sick was a understatement.  The “morning sickness” hit me like a ton of bricks.  First I ignored it. I was starving and simultaneously gagging at food.  I forced myself to eat. I took a plane to Florida to visit my family.  People started smelling funny to me.  I told my dad he smelled.  I got a tooth pulled. I almost passed out from the pain, I didn’t want to take drugs (little did I know what kind of drug cocktails I would be taking all pregnancy)  After I got my tooth pulled I couldn’t stop spitting. I figured it was a symptom of my dental work. But it wasn’t, it was a symptom of the HG, and for the next 9 months, I carried a cup, or a towel to spit into.  My own saliva made me sick, and the thought of it in the cup, made me sick and it burned when it left my mouth, because it was so acidic. My lips cracked and bled from it.

 I threw up everything I ate. Everyone shook their heads and said, don’t worry it will pass.  I was 6 weeks.  I called the doctor, “nurse, is it normal to throw up 20 times a day?” “Yes it is, you’ll feel better at 12 weeks.” 6 more weeks of this, can I do it?  I’ll try.

I went to the doctor, I went to a few.  They all said the same thing. You’ll feel better soon. I didn’t feel better soon.  I was getting worse. I was loosing weight. A lot of weight. I was in the hospital for dehydration. I would wait in the emergency room for hours.  There I got the same response. “have you tried crackers and gingerale?”  “Buddy, I tried eating raw frickin ginger, I have tried putting a lemon up my nose, I have tried eating before I get out of bed. I have spent a small fortune on acupuncture. I am wearing wrist bands that stop my circulation for sea sickness, I tried meditation” They gave me compazine for the nausea.  The reaction I had was worse than the sickness.  I literally felt like I was crawling out of my skin. I was screaming uncontrollably in the ER.  I said I feel crazy, I feel scared, HELP ME. GET ME OUT OF HERE. The nurse shot me a nasty look, I pulled my own IV out of my arm.  “Maam, we are working as quick as we can.”  I went to Court the next day, to continue to contribute to the clinic I was enrolled it.  I was shaking uncontrollably.  How did I drive there, your guess is as good as mine. I googled the medicine I took. Wouldn’t you know, anxiety is a reaction…so is shaking…do you think someone could have told me, would have calmed my fears that I would return to my normal self.  Or better yet, they could have given me Benadryl.  I walked to my best friend’s nearby office.  Got Benadryl and hung out on her office couch until she could help me pick up my daughter and bring me home to sleep. Sleep the only relief (most of the time) I was 9 weeks.

The next few months consisted of the same routine.  I went back and forth between my midwife and a OB practice just hoping someone anyone would offer help.  I finally was diagnosed with Hyperemesis Gravardium. Little comfort as there is no real way to treat it and no real known cause.  But it did mean they finally would admit me to labor and delivery to get my IV treatments.  I wouldn’t have to wait in the ER anymore.  I dropped my daughter off at daycare and around the corner was the hospital.  The admitting people knew me.  They wheeled me up the stairs.  sometimes my friend would come visit.  I would try to do school work, but mostly I would just lay there.  After the IV treatments, I could eat a little.  They would bring me the most delicious turkey sandwich ever known to man kind.  It probably would taste like rubber if I ate it now. But to me it was heaven. It was all I ever ate.  I would save the milk and straw to bring to my daughter when I picked her up.  I use to promise her a surprise, and she was young enough that that was just the best surprise to her.  She use to yell to all the teachers “my mommy brought me a milk and straw.”  I tear up thinking about her sweet innocence and love.  I couldn’t stand the smell of her at the time.  Her smell was the second worst. The worst was the scented trash bags, that were out on the patio.

On and on it went, my hospital routine (and mind you I was at one of the best hospitals in the country for women- if not THE best).  When I was 3 months, Zofran was offered to me through the IV.  I don’t think it worked.  It worked enough to let me eat that turkey sandwich, but the oral administration never worked, I couldn’t keep it down anyway.

I threw up.  When there was nothing left to throw up, I threw up blood.  I threw up bile.  I believe I almost died in April.  I started hallucinating.  I started having blurry vision.  I cried and prayed for a miscarriage. I laid on the bathroom floor, I may have passed out. It was a dark time in my marriage.  I called my best friend and said please take me to a clinic, I don’t love this baby, I don’t want this baby. Please. I wasn’t sure I would live through the night. But I did, and she didn’t take me to the clinic, she took me to the hospital. I was admitted. I was dehydrated. I was starving to death.

Slowly after that hospital stay, I started getting a little better.  We hired someone to help us in the house. And make dinners for my daughter and do laundry. I still couldn’t get up, but I could come out of the bedroom a bit.  I couldn’t wash myself, but my friend washed my hair.  I couldn’t hide easter eggs, but I watched from the kitchen table as my daughter made them. ( How I stood that smell, I will never know)

I graduated law school.  My professors were understanding.  I finished one final in 30 minutes (they allot two hours, I didn’t care if I failed, I just wanted to finish so I could go vomit) I passed and did well. I only went to the class two times.

Miraculously, I had a good week when it was graduation time.  Really good. I ate. I celebrated. I wore heels. I washed my hair and brushed my teeth. I was 5 months pregnant

Next week, not as good, but I am still thankful for that good week.  And the weeks thereafter as I slowly returned to my normal self.  I paid extra for the at home bar course. I couldn’t go out to the class. I studied when I could.  When the sound of the lectures didn’t make me sick.  I ventured out on a spring day. I got a massage and a bikini wax (because I wasn’t being tortured enough?). I hadn’t been intimate with my husband since the conception of this baby.  I thought I might like to try, I guess.  Didn’t happen.  vomiting is not synonimus with seduction. Go figure.

A lot of this is glossed over. It was horrific. The side effects of the medicine weren’t pleasant. I hadn’t so muched as taken an Advil for years and suddenly the amount of drugs being pumped into me, to keep me alive was unreal. I was worried and anxious there would be problems with my son.  I lost weight. A lot. I didn’t keep track. I wish I would have journaled it, but I couldn’t pick pen up to paper. I couldn’t be in light, I couldn’t have the TV on, and I couldn’t google to try and get help or answers, because all those things would make me throw up.  I had advocates, but my family didn’t live nearby. My sister was having a beautiful pregnancy. We were all flummoxed.  My midwife let me know that I was lucky to live in the US, because “women in other countries die from this.”  I felt like I was, I wished I was. I thank God I didn’t. 

I slowly started getting better By late July I think I was  mostly better. I gained weight. I took the bar exam.  They don’t allow cups in.  When everyone was worried about the exam, I was worried about my spit. I resolved to swallow it.  I was 7.5 months (I did in fact pass the test)

In September my beautiful Son came into this world,  all natural,  a healthy 8 pounds 8 ounces. I labored in the tub and meditated.  Full head of hair.  (I didn’t mention the horrific heartburn!) I had a beautiful birth at a beautiful birth center.  I don’t do pregnancy well, but women would be envious of the way I do birth, I love it and find it empowering. And it really comes easy for me.  I went home a few hours later. We practice attachment parenting, family bed, and extended nursing.  Two months later I woke up in massive pain. Kidney stones. subsequent tear in my kidneys. Surgery follows. First surgery ever.  A result of prolonged dehydration. Now I am prone to stones at 25 years old.

I never thought of pregnancy again, except to say it wasn’t for me. My family was complete.  Every now and then I do a little research on it, but what’s the point? I’m content, I don’t need the research. Life goes on. We move to Florida.

Two years later.

 I’m late. I don’t take a test. I don’t want to know. I always think I’m pregnant anyway, because I’m neurotic. Next month-late. I take a test.  I scream profanities. I cry. I call my mom.  I cry some more. I’m terrified.  I’m a little happy.  This means a baby.  And made out of love.  A surprise blessing.  My husband kisses my belly.  We tell everyone we know.  But I know what curse is coming.  I’m optimistic though.  I’m two months and I’m not sick! I call the midwife. I go in the next day.  she checks me, she says my cervix is not two months. Let’s get a sonogram. I wasn’t nervous. I knew she was in there and all was well. I go in the next day. All is well! I hear the beautiful musical sound of my baby’s heartbeat. I see the flickering of her heart on a screen. I tell her I love her.  The technician says I’m dehydrated. I haven’t thrown up too much, just feel like i’m going to all the time. And then I cry, because I’m not two months, I’m only 5 weeks, and I’m not in the clear for an HG free pregnancy.  They give me a script for Zofran and send me home. I take it around the clock. I stop nursing my son, I figure he’s had enough Zofran to last him a lifetime.

My sister has her second baby, we are suppose to go see her in a few days, I have vacation time from work.  My husband is away, he texts me to tell Iyla goodnight too.  It sounds like I love. That’s our name for the baby right now.    I never make it to my sister (I’ve still yet to meet my nephew).  I couldn’t get out of bed. I can’t drive my daughter to school. I can’t eat. I get ready to tell a friend that we aren’t going to make it to her wedding.  I vomit a lot.  Smells don’t bother me yet. I have to spit in a towel on the floor next to my bed.  My Husband is helpful, but its hard to be the 24hrs a day caretaker. My son is a handful. He has speech delay and is prone to fits.    I call the midwife. I need fluids. I’m throwing up a lot again. I haven’t showered or brushed my teeth. She tells me to go to the ER.  My insurance isn’t as good as last time.  Each visit costs $200 just to walk in.  I went every other day for 6 months last pregnancy.  You do the math.

They don’t understand this disease.  They make me wait forever.  They give me a bag of fluid,  I begin to dream of that turkey sandwich.  When I ask for food, they say they don’t have any to give me, my husband runs to get me chicken nuggets.  They tell me to try crackers and ginerale, and to eat before I get up in the morning. They do a sonogram.  They can’t see anything because I’m dehydrated. They do an internal sonogram. The nurse doesn’t let me see the baby, and I don’t ask to see her.  I have already begun to make up my mind.  Back in the ER room, The lights are off. The nurse comes in and throws the lights on, and looks me in the eye and says “its called morning sickness and it sucks, you must leave now.” I throw up the whole way home. I pee on myself when I vomit, from the force of it.  I throw up completely undigested chicken nuggets in my living room, when we walk in the door.  I grab paper towels to clean up the mess.

I called the midwife the next day.  I told her I’m going to end the pregnancy. I’m so sick.  She says nasuea is a bad reason to end a pregnancy. She tells me to go in and see her.  I call the office to make an appointment, they say she’s not going to be in that day.  I’m too sick to drive there. I call my mom. She comes to get me. But I tell her I don’t want to go there, they can’t help me.  My friend finds a doctor who might be better at managing this disease. They don’t have an appointment for me right away. I don’t want to do this again. I don’t want to beg doctors to help me.  I’ve made up my mind. Everyone, except my mom, that I consult with about my decision thinks its a good idea or at least a justifiable one. I’m too sick. They don’t want to loose me.  I think of all the things I’m going to miss during the coming months if I have to lay in bed.  I think of my sanity, my marriage, my kids. I’m afraid if I die my kids will be left without a mom. I’m afraid my son and daughter will be separated from each other if I die (as my husband is not the legal guardian of my daughter).   I’m just plain afraid.

I call, I weigh my options. I google the different methods. I call another Doctor. My old GYN. I go on autopilot.

I cry and scream. I cry and cry and cry and I yell out, “I want my baby.”  I plead with my husband, I say I don’t want to do this. I secretly hope they will refuse to perform it, because I am clearly a mess.  I take the pills they give me and the last thing I think before I go black, is “there’s no going back.”  They perform their procedure. I come to and  the first thing I say, is “I named her Scarlett Juliet.”  My husband is crying.  I scream. The first of many.  I WANT MY BABY. He carries me out.

It took a few days for the vomiting and the extra saliva to stop. I lay in bed. I become fearful that the symptoms will never go away.  I have heard of this before.

I live everyday with the effects of this disease and my decision. I obsess over getting pregnant again. I’m on a restrictive diet because a homeopathic doctor thinks she can balance my body so I can get pregnant again.  I have little faith. Yet, I have never stuck to a diet this well before,  motivation, longing, retribution, a loss of appetite? I have digestion problems still, sometimes I wake up thinking I have kidney stones again, I fear it. I called a new OB and had a consult. She thinks I made the right decision for my health. She says I did nothing wrong.  She said I could have been offered different drugs, Vitamin B-6, unisom, home-care, a nutrition line.   No one ever offered that before.  She says I had bad medical care both times. Aggresive treatment could help. She said I wouldn’t want to get throat cancer from all the vomiting or loose my teeth. She says it was the disease not me.

Some say they’re sorry for my loss. They don’t really understand what I’m grieving though. Few act as if I really lost a child. No one brings food, or lights candles, no one really consoles me anymore.  It’s a taboo subject. I suspect some would think I deserve to grieve, after all, I signed on the dotted line.

 I replaced one kind of pain with another. A much worse suffering. Life before HG will never exist for me.  I am empty. My husband watched the procedure. He held my hand throughout it. He later said something that haunts me to my very core…I can’t repeat it.

 I wail.  I don’t just cry. This is wailing. It comes from a deep place. In my gut.  My body shakes from the force of it. It’s a place only a grieving mother will know.  I cry for my child. I cry because I was robbed. And I cry because at a time when everyone is starting their family, I am faced with the reality that I am finished building mine.  I feel guilt.  I feel like a bad mother. I hate my body for failing me. I hate everyone around me for failing me.  I lost my job. I can barely keep it together. But I must.

I get another job.  I sign up for counseling and church groups.  I go on forums. I find there are a lot of women who have been in my shoes.  And lots who have chosen this path. I start talking about it less.  I push it out of my mind.  I decide I am still very  much pro-choice.  I decide that I killed my baby. I decide that what I did was understandable. I decide I deserve to suffer. I plan to make a peaceful garden. I donate to a pro-life clinic.  I hide my sonogram picture. I blog and talk incesstantly about it. I want to make retribution by getting through a horrific pregnancy. I look into adopting.

I feel like a monster and having the blessing of the medical community or friends, family and counselors, doesn’t make me feel less so. I beg the baby for forgiveness. I talk to her all the time. I don’t feel worthy of talking to her.  When people ask me how many children I have, I desperately want to say three. I always say two.

They call it therapeutic termination.   I feel worse, it doesn’t feel therapeutic.  What do I do now?  At this moment, I simply remind myself to take breaths.

Your wings will mend (breathe in)

You are loved (breathe out)

Advertisements

6 Responses to Breathe In, Breathe Out. My HG story

  1. Sanya says:

    Your story really touched me. I want to tell you that there is hope. I had HG twice, 2 sons, and just got out of 3rd HG that was the mildest one so far. Actually, it did start quite horrific. I did not eat or drink for 3 days. I have called my OB telling him I wanted to terminate, and he told me “because of a bit of nausea?”…I hung up and cried. My husband and I have absolutely no help, no friends, no family around, I kept thinking I will not be able to take care of my boys, that my health may be ruined (I am also older, 37), that my husband may loose his job…all the same thoughts that you had. Then the next day I woke up and thought of the nurses preparing me a clear, veggie soup 2 yrs ago when I was in the hospital with my second HG. I remembered it tasted good then. I asked my husband to make it, and that was the first liquid I took after 3 days…it felt sooooo good. I laid down immediately to keep it down. Then I thought of a salad (cucumber, tomato, a bit of feta, with a bit of balsamico), ate that every evening. Drank cold mineral water. For breakfast one banana. SOMEHOW, I was able to fight HG, to keep my health, despite it being difficult, a constant struggle (was throwing up about 5-6 times per day, although I could have probably thrown up every 10 minutes, but I fought it). My poor husband had to do everything, he almost went crazy. I lost 16lb, but am slowly making it up. I really believe that the megadose (65mg) of vitamin B6 that I started taking the moment I found out I was pregnant could have eased the symptoms. HG also ended sooner (wk13) than the previous two (wk 16) when I went into the it totally unprepared, well I tried acupuncture in the second that did not work. Don´t know. I was so close to terminating, and I completely understand every woman who has done it. There is so little understanding for this disease. My heart goes out to you. Hug and kiss.

  2. Alana says:

    I can feel your pain in your words. Sending you healing and love.

  3. Lonely says:

    Im truly sorry about your loss.
    Just reading this brought tears to my eyes because I know what you went through. I had to have an abortion because I couldnt fight anymore. I was seventeen when I found out I was pregnant. My family thought I was harming myself but my mother knew that I wouldn’t harm myself. Im 5’10 and I weighed 120 pounds before I got pregnant, at four months (I dont know why I waited so long to see the doctor) I weighed 100 pounds. On July 25 which was my eighteenth birthday I found out I had HG. I couldn’t take it anymore. I turned into a monster, I treated everybody around me poorly. I had to end the pregnancy and now there are days when I just wished I would have fought harder. I feel like I failed my baby. I just wanted to say Thank you because I thought I was alone. When the time comes back around for me to have a kid I will fighter harder. HG will not get the best of me anymore.

  4. Tara says:

    Fighting back the tears reading your story. I too know exactly how you feel. I have 2 teenage children and suffered HG with both. I am re married. We wanted to start a family and i always manage to fall pregnant so quickly but again the dreaded curse hit me and i was unable to find the strength or sanity to continue the pregnancy. After that i had 2 miscarriages which i was convinced was my punishment for letting my angel go.Yet here i am again 9 wks 1 day vomiting everything that goes down, crying and begging for some kind of miracle, but am determined that this time i will win. I feel that this is my last chance as i am nearly 40 and i don’t think my body could take any more. I wish all the HG sufferers the very best of luck and remember that we are only human. x

  5. Hope says:

    i’ve rarely read anything that has affected me so deeply.
    i sit here with tears streaming down my face -tears for you .
    i have 2 children -had HG with both ,so, i did not have any more . my youngest is almost 16 now, but i can remember how horrible this illness is -and how no one really understands unless they’ve been through it . my illness was severe and i can remember times when, if i could fall asleep, i wished i wouldn’t wake up . and those feelings are impossible to explain to anyone who has not experienced this illness. i have not lost a child though , and my heart aches for you . grieve ,and cry -don’t let anyone tell you to “get over it ” -it isn’t that simple -but , please, please , forgive yourself – God is merciful . you have suffered enough . enjoy your children who are here and yes, you do have 3 children , one is in heaven .

  6. mmmarzipan says:

    Was just referred here by another blog and I just want to say that you are so brave to share your story and I am so sorry that you have gone through this. My heart goes out to you. I wish you all the best

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s