Introduction
Hi. I’m Sam.
(Hi, Sam!)
I’ve never been to Alcoholic Anonymous, probably because I don’t drink alcohol. I’m just a ‘seasoned’ (but young looking!) hospice nurse that took a break from end-life care during a small part of my medical career and attempted the struggles of addictions nursing. In that time, I worked at a Methadone Treatment Center. I befriended many patients battling treacherous demons and through their bravery; learned numerous invaluable life lessons. Now, some lessons were more valuable than others. Some of the slang terms or alternate meanings given to existing words didn’t seem as beneficial to me as learning the difference between a ‘desire’ and a ‘need’.
I replay of a few dramatic statements that possibly still linger through those callous clinic halls. Forlorn words that’ll eternally burden my highly sensitive heart. Upon assessment of a new admit, a brilliant engineer with freshly colored midnight hair barked at my routine questions,
“Why am I here? It’s not all about brains. You’re smart and you’re right here with me, Nurse-y. Maybe you’re not smart, maybe you don’t understand. It starts with a NEED. There it is. A NEED. It will make you do anything. I NEED pain medication to treat my pain.”
You could see the desperation in her eyes, so much so, I believed her. Her pain medication was her oxygen, in her mind.
One can argue, medically speaking, she and many others did ‘need’ their daily methadone dose. After years of taking a substance, your body will go into shock if it’s suddenly stopped. Another patient, had mentioned casually,
‘I need it like a fat kid needs cake.’
I later had to submit statements to the police about him selling his medication in the clinic’s parking lot. He also used the word ‘need’. As a medical professional with great responsibilities for patient life while on a highly regulated and extremely controversial drugs (dosages assigned by me); I felt he didn’t have a NEED to digest methadone…
What do we really NEED?
That question brings me to my real story.
From the top…
Hi. I’m Sam. I’m a modern-day, educated scientist/nurse that nearly died from Hyperemesis gravidarum. I went without NEEDS. Nearly impossible with my education, current medical advances and technology. Several individuals and organizations have asked me to share my experience. I’m finally speaking out and I’m here to be an advocate for others suffering or still living the devastating effects left behind by a very rare and misunderstood disease.
Needs. Sex, Drugs, & Rock and Roll? My Personal Tale.
What is a need? Ahhh. Philosophy 101.
Study this photo and relive the first year of college. The foundation in the famous Maslow Hierarchy Pyramid shows our ‘Physiological needs’ these are noted as biological requirements for human survival. They include;
- Air
- Food & Water
- Shelter & Warmth
- Sex & Sleep.
Please feel free to debate amongst yourselves on the work of Maslow, Pavlov, Plato, or bask in the unsettling details of Freud’s own Oedipus Complex, whatever floats your peaceful philosophy sail. Of all the disagreements that may arise, none oppose these brilliant visionaries all concede; one cannot sustain life without food and water. Trust me on this. Hyperemesis gravidarum cost me every tangible item I owned, my friends, career, family, by limiting basic vitals of survival.
If there was ever a challenging time in my life, it would be in late 2016, early 2017.
Ever felt like you were hit by a semi truck? I really was.
Going for a play date, stopped at a right light. Currently, my neck is glued in tact by means of a spinal fusion. Left clavicle is a human placed plate, secured by six little screws. I gained the nickname ‘Wolverine’ for the amount of “metal” in my body.
That was the start of what I like to call, “The rapid Demise of Sam’s Ego”
My “younger” healthy grandfather, collapsed as a result of brain cancer. Hope continually decreased as he was suddenly given very little time. My grandmother and I, with the help of family and friends, cared for the genius inventor in the home the hobby carpenter built by hand.
Working 60 or more hours as a hospice nurse, going ‘home’ to hospice a loved one, had a large impact on my health. I was pregnant and silently having complications.
It would have been selfish to share personal problems as the patriarch and pride of our family was gracing us with his precious last moments.
So, I didn’t.
I had a miscarriage the night my grandfather passed, soon after wasn’t able to keep up with the demands of a nursing career, lost my job, and lastly tried to get rid of my husband because I was both physically and emotionally distraught.
My grandfather’s farewell was held at the Catholic chapel he volunteered as a 4th degree Knight. My makeup concealed most, but as the first tear strolled down my face, I knew I knew the floodgates would show how ill I really felt. I stopped it’s peers by concentrating on the sole tear’s splatter upon the phenomenal one of a kind, mahogany pew. Those exquisite kneelers used for worship were once a pile of unused wood. I would know, as my grandfather was the gifted servant spending his retirement constructing them so there were times of belongingness in the midst of despair.
“Successful loser” was never a title I’d accept on my Linkedin resume.
Needing to overcome impossible odds always motivated me to the point of being unstoppable. I took all my pain, anger and sadness out on studying a new trade. Refer back to Maslow’s Hierarchy Pyramid.
According to my belief system, in that time, I was rebuilding ‘Safety Needs’, by starting a new business endeavor in a completely different professional industry. Studying and working on a startup full time, I was on track and had high hopes success would quickly follow my actions.
BAM. Another semi truck!
Well, a metaphorical one this time….
With absolutely no warning I fell extremely ill.
First, weakness, nausea, vomiting for a few days. Then weeks. A month, two months….
It was after 10 solid weeks, friends and family started noticing everything I ate or drank came back up. Everything.
As a nurse we are told to tell our patients to get one of those little medicine bottle caps, fill it with 30 cc’s of water and take it every hour. With such a small portion, it’s virtually impossible to throw up. But when I couldn’t keep minimum life sustaining amounts down, I knew I should reach out.
“I know your “goodie two shoe”-self isn’t doing anything ‘cool’ or mildly irresponsible, so we can rule drugs and aids out. Must be cancer, stupid! Go to the doctor, you look like rigamortis chewed you up and spit you out.” said fellow colleague when I asked for advice. (Hospice nurses…#facepalm)
I was convinced I was just having a bad autoimmune flare. There was a major battlefield at play in my mind. In moments where dangerous waves of hopeless nausea and debilitating vomiting, charged through my frail body like a team murderous pirates, my journaling read “This feels like death! I NEED WATER! I NEED FOOD! I NEED TO STOP THROWING UP! PLEASE! I NEED IT TO STOP!” (Maslow agrees with me, I’m just say’n)
When the gastrointestinal system, also known as ‘the theater of war’, calms; there’s stillness. Drinking crisp fresh juice, to the temperature of near ‘slushie’ was a magickal experience I prayed for. Having a frequently uninhabited stomach, it seemed you could feel the liquid delightfully dancing down the esophagus. I rejoiced as the calories and nutrients dispensed throughout my system. “It’s okay, it’s just your autoimmune disease. I can’t die from being skinny. It’s just stress.” I’d reassure myself.
I ignored friends when they made concerned statements. It’ll pass, I told them.
It passed. Wait… sorry. I passed out. That’s what I meant.
I was carried into ER after collapsing. The ER nurse helped me onto the scale. 22% of my body weight dropped. Nurse went through my chart. Checked my vitals.
“I know you” she said. “You’re a nurse, right?”
“I am. I don’t work as one right now.”
“Obviously, you can’t handle patient care in this state, silly. Pulse. 136 beats per min. Blood pressure 80/44. It’s been awhile since I’ve seen a heartbeat though the pelvis, you’re so tiny now. How many times have they tried to get an IV on you?”
“I’ve been stuck 6 times.” I said in between crying, heaving and projectile throwing up.
After they put an IV in my neck, yes in my neck… we term it “JV”, they were able to draw lab, pump some fluids, administer anti nausea medication, and they’d ‘be back’ with results.
The doctor enters looking mildly annoyed.
“It looks like you have yourself a case of Hyperemesis gravidarum, you said you weren’t pregnant and had polycystic ovarian disease. PCOD and patients with autoimmune complications like yours don’t TYPICALLY get pregnant. When was your last period?”
“Uhhh… I know I can’t get pregnant…. that’s what my doctors say. I don’t have a period. I’m what? I haven’t had sex in MONTHS! What’s Hyper hmmm a hum a hummus gravity? I’m a nurse, stop making sh*t up. Is there really a baby in there? This isn’t funny, I’m really sick or I wouldn’t be here.”
I partnered with GraceMed and The March of Dimes to teach, collect data, and save lives with the ‘Becoming a Mom’ Program in previous years. I had never heard of Hyperemesis gravidarum or ‘HG’ for short, apparently it’s very rare.
Let’s Get “Medical”. What is Hyperemesis gravidarum?
Help Her is a nonprofit geared to help those with Hyperemesis gravidarum. They state “HG is a severe form of nausea and vomiting in pregnancy. It is generally described as unrelenting, excessive pregnancy-related nausea and/or vomiting that prevents adequate intake of food and fluids. If severe and/or inadequately treated, it is typically associated with:
- loss of greater than 5% of pre-pregnancy body weight (usually over 10%)
- dehydration and production of ketones
- nutritional deficiencies
- metabolic imbalances
- difficulty with daily activities
HG usually extends beyond the first trimester, which is unlike ‘morning sickness’. Some have resolved or ‘lessened’ symptoms by 21 weeks; however, it can last the entire pregnancy. Complications of vomiting (e.g. gastric ulcers, esophageal bleeding, malnutrition, etc.) may also contribute to and worsen ongoing disease.
Diagnosing Signs and Symptoms include;
- severe nausea and vomiting
- food and odor aversions
- documented weight loss of 5% or more of pre-pregnancy weight
- dehydration, headaches, confusion, fainting
- Jaundice, pale skin (pallor)
- Extreme fatigue (malaise)
- Loss of skin elasticity
- Secondary anxiety/depression
- ketones in urine, decrease in urine output
- electrolyte imbalances
- excessive salivation (ptyalism)
- a rapid heartbeat (tachycardia), low blood pressure (hypotension)
- In some cases, affected individuals may have a distinct odor to their breath (ketonic odor)
- Symptoms associated with the disorder may subside and recur (“wax and wane”) resulting in affected individuals being hospitalized more than once during their pregnancy.
NORD states on their RareDiseases.org site, “Quality of life is also affected. Individuals are often unable to work, complete daily household tasks and routines, care for young children and, in some cases, may elect to skip social activities and functions. Persistent and severe nausea and vomiting associated with hyperemesis gravidarum may put a strain on various family relationships as well.”
Treatment Methods
As a scientist, aka ‘nerd’ I enjoy gathering EVERYTHING I can about a topic and becoming as much as an expert as possible before making a decision. When it comes to educated treatment options for Hyperemesis gravidarum, THIS is an article I don’t think ANYONE should overlook.
The contributors to the publication are gifted beyond my describing ability, as they’ve spent tireless hours compiling research and medical data. Within this document there lies nearly every option recommended by professionals.
Hyperemesis gravidarum Treatment Method Charts
*NOTE this is an article. It is NOT medical advice. SEE A PROFESSIONAL FOR MEDICATION & TREATMENT.
Personal treatment.
How did I survive HG?
Isolation, rest and a TON of medication! I was basically sedated and pumped full of anit-nausea medications.
Imagine a disease where loud noises triggered hours of relentless projectile vomiting. That’s HG.
This is a post from a social media health update:
“Hyperemesis gravidarum; fighting for her life.”
After weeks of nausea and vomiting, Sam thought her lupus/RA was flaring up. Turns out the impossible happened! She was pregnant. This was highly unlikely because her health; pcos, lupus, RA and being underweight; from a miscarriage of twins in November 2016.
Early into the pregnancy, Sam dropped 33% of her body weight, bled, held critical labs, and was vomiting 40–80 times A DAY! Hyperemesis gravidarum diagnosis was perfectly fitting.
What’s Hg? In less words; Our bodies completely reject being pregnant. Treatment is trying to manage symptoms until delivery. Finally, entering the 3rd Trimester, after NUMEROUS hospital stays, endless amounts of tests, seeing 6 doctors/specialists AND being in a HG Study at UCLA, Sam was able to go home on a picc line with;
*iv D5 1000mL/125mL/hr
*Iv Iron & blood Transfusions qd
*Phenergan 50mg Admin: piggy backing on the D5
*iV zofran pump 8mg qhr plus 4mg bolus PRN, qhr
*sl zofran 8mg q4–6
*oral phenergan 25–50mg q6hr + q4prn
*1200mg apap + 50mg Benadryl bid (sedating the esophagus to reduce vomiting)
*diclygsis 25/10 tid + PRN q 8hr.
*standing orders at the hospital’s infusion center for all the above, PRN for the days I can’t control the vomiting with home health.
On all that, She still vomits about 50–75% of everything consumed. Since this disease only gets worse as the pregnancy progresses, she’s requiring more care. She’s currently on bed rest, because she’s battling kidney and cardiac complications related to the Hyperemesis gravidarum. She’s 33 weeks pregnant and still losing weight.
Insurance is prohibiting some of the medical care she needs and she’s not able to work being bed bound. Positive thoughts and prayers please.“
When asked what Hyperemesis gravidarum is, I tell people my experience was; vomiting to the point of death, until receiving medical intervention.
“I sat alone and envied your instagram worthy pregnancy. I wish I could have had a Pinterest looking baby shower. I planned it! I begrudgingly deleted it knowing I wouldn’t survive another pregnancy. Oh, self conscious ladies…. stretch marks you hate? I’ll take them.”
My pregnancy resulted in zero maternity outfits. No pregnancy photos, except those taken from the hospital, where my picc line is visible. I ended up on home health services, in my bed at my mother in laws house, praying just to get to the next hour when my anti nausea medication would kick in.
My husband says he was advised on three separate times, by different hospitalists to have an abortion or possibly face losing both his wife and his unborn child.
I had very little family and support. Too depressed, stubborn and desperate I refused to face ‘reality’ and lived nearly total isolation for what seemed like eons.
Want a window view of what MANY HG Sisters encounter? Same story, different sister…
My OBGYN or ‘lady doctor’, was in his late 80’s. The same physicians have fulfilled my medical needs all of my life, except when they FREAKING retire. Ironically, because personal connection, being a high risk pregnancy in the past, my age, and the pure heart of Dr. B (OBGYN); he volunteered to see me out of retirement.
In a poor quality ‘VHS-type’ dream sequence, I obsessively try to remember what suffering came first following the call between my physician and myself. Words I’d regret more than ALL the things I did in college COMBINED came next ‘that’s not necessary Dr. B. This is your time to be with your family and enjoy your own grandkids!”
I didn’t realize being a sweet Kansas hospice nurse would bite me in the ass… then take off most of my ass… then hurt when I sit on my ass…
The new doctor I settled on, was a fresh med-school graduate. He did not find favor with me or my nurses when he erroneously made mention my “vomiting was so immense, it seemed forced, possibly from a current or past eating disorder.”
A separate statement was made after he kept me in a hospital for for 3 days watching me vomit, sending hospital staff in every two hours promising I was ‘holding out’ for a test they had to run, and “we’ll bring anti nausea medication in 30 min to an hour.” They legally tortured me and my husband for THREE devastating agony-filled days, where I NEEDED something to stop the vomiting. This doctor, like many others have no idea what they’re doing…
Even after being maxed out on medications, I still struggled a great deal with my disease. Then… just like THAT.
CURED. It’s OVER!
The ethereal understanding every Hyperemesis gravidarum sufferer holds onto more tenderly than the rarest of CryptoKitties, is the victory of resolved symptoms when pregnancy ends.
(CryptoKitty, aka a costly gemstone for all you weirdos that collect “normal” things).
When successfully treated, most women enjoy their favorite foods almost instantly after expelling the bundle of joy you body was ‘allergic’ to. I know I did…
There was so much Vegan food.
Special THANKS to Vegan HG supporters: Blaze Pizza (Brett), Chipotle Mexican Grill and Starbucks Coffee
@BlazePizza, @Chipotle, and @Starbucks filled my hospital room after birth… you have no freaking clue.
Just like THAT! all the symptoms of Hyperemesis gravidarum vanish.
It’s hard to grasp.
Some women, leave the hospital with only remains of the disease in forms of horrible nightmares. Other’s face treatment for malnutrition, GERD, Ulcers, and other complications. Some women I’ve known, have been buried by their families. There’s also a death toll for unborn children, we will never be able to imagine. But here I am… alive. My child is alive and well, too.
Hello, Rainbow baby, miracle baby, food, water, utter disbelief, an uncountable amount of emotions and “Survivors, guilt.”
Happy Birthday, Baby!!!! Hyperemesis a Year Later….
My son’s first birthday brought tears of joy and pain. The day before he turned a year, I was still struggling.
“You’ve been my doctor 20 years now.”
“Oh my gosh, I guess you’re right. You grew up in this office.” My doctor looks at me, she would normally scroll through my chart and listen. Today her eyes were fixed on me.
“What was your highest weight? Hmmmm. Records show 177.8 cm (That’s 5’10, Americans) & 168 kg (370 lbs).” She looked at the scale and back at me. She repeated. Scale, me.
“Currently, 43kg… I thought there was a mix up pounds to kilograms conversion. I was hoping you weren’t REALLY only 97 lbs. Your blood pressure is really low, you think you just damage from Hyperemesis gravidarum? I’ll be honest, we can’t treat anything until we check your kidney, liver, & heart functions. You’re dangerously thin.”
I stood in tears in front of a woman I’ve always loved, respected, have been transparently honest with. My mother was my doctors nurse right out of nursing school, my doctor wrote my letter of recommendation for nursing school. My physician has not only overseen the care of my mother, me, and my sisters, for 20 years; Dr. T. is the primary care provider for several friends, dozens of past patients and she was the medical advisor for a home health company I worked for 5+ years. I’ve never trusted any other primary care physician or wanted to go anywhere else because my medical provider had always met my needs and is a highly sought after family medical professional.
You know that look of disappointment, worry, concern, and utter disbelief you’ve seen on your sweet great grandmothers face after your stupid butt decided to do it “your way”? Picture it. You know which one I’m talking about. You aim to avoid this heartbroken blankness, at all costs.
In my mind, I “let down” Dr. T. I never went into my doctors office with great embarrassment of what she would say or think. I took care of my body. I gained an obscene amount of weight after being diagnosed with the same autoimmune disorder she also struggles with. I fought in my early 20’s to lose weight. But I conquered my battles and taught weight loss classes, cooking classes, gained a certification in holistic nutrition, and became a paid sponsor/spokesmodel for my success. It’s easy to gain a physician’s respect by being open, honest, following treatment plans, being prepared/educated, and having transparent discussions with your medical team.
Dejectedly, I’ve not been that patient while having Hyperemesis gravidarum.
Why?
Embarrassment. Anger. Fear. Truly unable to get out of bed and leave the house. Anxious to speak up for help. Consequences. Affordability with treatments when no longer working. The criticism, judgment and endless unnecessary comments forcly fed; are all decent reasons to why one would cruel up in a ball and admit defeat.
Embracing the mentality; there’s no fight if one allows the opponent victory, assisted me through harrowing moments, but hasn’t done much for my recovery.
Losing an extreme amount of weight and have kept it off over 10 years, working on multiple impressive medical teams, I was usually proud to walk into my physician’s office, just not now. I was completely and utterly depleted.
One year aftermath: Weak, pale, hair and nails falling out and breaking off. Diagnosis of ‘Starvation & Dehydration”, “Acid Reflux”, “GERD”, “GI Complications”, “Hyperemesis gravidarum, unresolved”, “Lupus & Rheumatoid Arthritis” “Anemia”, “Low Bone Density”, “High Risk for Infection and Injury”
Complete strangers feel compelled to encourage me to eat. My family and friends make comments about eating ‘bacon’ or ‘cheeseburgers’ not understanding. They can’t help it, HG last left me closely resembling a skeleton hanging in an underfunded public school.
Instead of celebrating victories publicly, I quickly “closed down” emotionally and started struggling in silence after being accused of having an eating disorder by those unnecessarily providing ignorant opinions on my physical appearance. Which is very important to touch on…
Strangers, friends, family, acquaintances, dog walkers…. anyone that isn’t on your medical team this next section is for you.
It’s Hyperemesis gravidarum, NOT “Anorexia”
“OMG! You’re so skinny! You’d be perfect in those starving animal commercials!” Gotta love having an online following of 19k “professionals”. Some just say the ‘darn’est things! I call these people ‘LinkedIn Losers’. Game show anyone???
Remember the 80’s and 90’s? It seemed there was a huge increase in individuals stating they had dangerous body image. Anorexia nervosa increased so rapidly in the 1980s in the U.S. that the disease became known as the “disorder of the 80s.” (Kramer, Gerri Freid.The Truth about Eating Disorders. New York City, NY: Book Builders LLC, 2005.)
During my high school years, when an overwhelming amount of Americans were falling on the pressures to adhere to unhealthy body images, I noticed ‘pro ana/mia’ “support”.
Note, Pro ana/mia sites are incredibly dangerous they are often individuals encouraging life threatening starvation and rigorous exercise methods.
Doing medical research for this article, I discovered young ladies and boys posting ‘RIP’ from the losses of their peers with such unhealthy weight loss methods. I was sad to see desperate, illegally medicated actors/actresses, musicians and models as inspiration for this community. Please note, Hyperemesis gravidarum is not an eating disorder.
“An eating disorder is characterized by abnormal eating patterns that attempt to satisfy a psychological rather than physical need. The three most common disorders are anorexia nervosa, bulimia nervosa, and binge eating disorder.
“Anorexia nervosa is characterized by self-starvation, weight loss, an irrational fear of gaining weight, and a distorted body image. “
“Bulimia nervosa is characterized by a cycle of compulsive binging followed by purging through various means, such as vomiting, laxative/diuretic abuse, and extreme exercising.”
“Binge eating disorder is the most common disorder and is characterized by frequent periods of compulsive overeating without accompanying purging behaviors.”
Sonenklar, Carol. 2011. Anorexia and Bulimia (USA Today Health Reports: Diseases and Disorders). Minneapolis, MN: Twenty-First Century Books.
As you can compare and contrast, Hyperemesis gravidarum is very different from an eating disorder. HG is undesired nausea and vomiting. You may be more educated on Anorexia Nervosa than a weird, pregnancy, puking disorder mostly because there were tons of celebrities highlighting the dangers on eating disorders and supporting healthy body campaigns.
“Celebrities who have had a history of eating disorders include Paula Abdul, Karen Carpenter, Jane Fonda, Elton John, Princess Diana, Lynn Redgrave, Billy Bob Thornton, and Joan Rivers….Dennis Quad, Paris Hilton, Nicole Ritchie”
Factretriever and the book ‘Anorexia and Bulimia’ continue on. But, until recently, there’s not been anyone famous to bring attention to Hyperemesis gravidarum, a rare and life threatening disease. We have recently added Amy Schuyler and Princess Kate Middleton to the unfortunate sisterhood that is literally barf.
CHECKMATE those are some boss babes that’ll make a difference in the future! #HOPE
Please remember: There’s such a stigma and horrible lack of education around Hyperemesis gravidarum. Some HG sufferers have battled with eating disorders. Please be aware of your words to someone struggling. I absolutely swear to you, I eat. That was never an issue. I also kept my food down with proper treatment. Those of you giving advice: please remember it’s wise to only take medical advice from a qualified, experienced professional.
In less professional words: “Shut the hell up, you’re not my doctor.”
Poking Dead Things. Aka “Looking Back”.
Much like an F5 tornado, the destructive path Hyperemesis gravidarum leaves behind fills our hearts with fear and sorrow. The survivor guilt eats us as we watch other girls struggle. No matter how much we try to forget or tell ourselves ‘it wasn’t that bad’, HG will always be engraved in our souls.
Living in Kansas, we see a lot of tornadoes. Familiar?
Pregnancy discussions for HG patients are comparable to “Twister” scenes. We envision ourselves screaming, running for our lives, diving into any form of transportation we can find to get away.
Pregnancy scares? Oh gawd. Please, don’t. When you see ‘not pregnant’ that experience is comparable to fleeing from an ALL CONSUMING tornado at wicked high speeds.
You’ve seen ‘Twister’ it’s the part of the film where the main character is a complete hot mess, driving like a bat out of hell, staring at the rear view mirrors, ensuring they don’t get sucked into the depths of hell like other’s before…
You’ve escaped by means of a miracle and a G-d that loves you. Not pregnant means there’s no ‘tornado’ of vomit to produce flying cows. Can I get an Amen?! -Amen.
There’s ‘No Hope’ !!!! My Cope Guide to You.
Obviously, being condemned to a bed, hooked up on continuous IV’s, and facing everyone’s false or personal opinion, there’s a major physical and psychological toll HG Warriors struggle with. So, how will you survive? What’s to come? What’s there to be afraid of?
“Starvation begins when an individual has lost about 30% of their normal body weight. Once the loss reaches 40% death is almost inevitable.” Source: Time magazine, November 11, 1974, cited in Pojman, Paul; Pojman, Louis (2011). Food Ethics. Cengage Learning. p. 128.
I read things like this, and look at myself in the mirror. 36% of my body mass total lost. Before this disaster, I spent my spare time rock climbing, traveling, played/coached multi sports, belly dancing, competed in 5k’s, ran businesses, was at endless social functions- Now, I’m grateful if I can walk around the grocery store with my infant that weighs more than a third of my total body weight. Despite my excellent sense of humor, this disease isn’t a joke.
Here are a few tips I have to help with your HG battle.
1. Say GOODBYE, F*** YOU, FAREWELL to unnecessary stressors in your life. Cut out negativity!!!! NOW. Do not listen to that friend that is always complaining about how bad her hair is….
You’re going to puke your baby out if you let the stress kill you. (No, you can’t medically give birth by puking. Please do not try, or use my stupid quote out of context… Yes, that’s you Jason.)
2. Do not listen to the criticisms of others unless they pay your bills, write your scripts or they’re holding your hair back as you vomit. I am not being dramatic when I tell you the opinions of others have literally cost; very precious time, family members, friends, a means to make money, AND it’s worsened my health, while lengthening my recovery time.
Do you know the exhaustion of carrying ⅓ of your weight around on your hip with a spinal injury is like? It’s hard, and I can’t do it without help. No one has walked in my shoes, and no one else is walking in yours! There’s no shame in having struggles. ANYONE that says ‘it’s JUST morning sickness’ to a Hyperemesis gravidarum patient, should have to endure it.
3. Join a Tribe. There are support groups lead by strong women I’ve come to know, one titled “Hyperemesis gravidarum; The Aftermath”. I’ve personally met other women with Hyperemesis gravidarum, it helped save my life.
One friendship was formed because a fellow local with the disease gave me her doctors information and I was able to get a picc line and treatment, which saved me and my son’s life.
4. Get smart. Becoming an expert should always be your goal in all you attempt. Educating yourself will not only allow your needs to be better met, it will be helpful when you have to make difficult decisions with your health care team.
Fun hg fact! Some women find relief mid pregnancy, many get ‘fluffy’ days aka “less-sick” days. (These are the days we try to binge eat!)
5. Hire an EXPERIENCED TEAM of professionals. Un-properly treated HG patients face an extensive recovery in relation to the damage done. Upon seeking treatment for a rare and complicated disease, never attempt an individual not willing to collaborate with experts.
I had a “professional” claim my state was ‘possibly exaggerated” or “fictitious”. Screw you, Dr! Food and water are basic human needs. Not allowing my body to retain it’s input; I obtained a medical diagnosis of “Starvation” a year out from this experience. That is not a result of ‘morning sickness’ or ‘factitious disorder’, you deserve your license taken! You are putting lives in danger!
6. Document EVERYTHING. Keep a journal. Know your medications. Hyperemesis gravidarum is like a lot of things in life. It has a “song”. It’s a terrible country song about your pickup truck blowing up and your dog dying, but you’ll notice rhythmic patterns in your disease.
I could drink fresh juice made with alkaline water after my phenergan bolus at 11am. It was a ‘safe’ time. Most of the nutrition I retained was during this time period, if I had not written down each time I ate, took meds, used the restroom, or vomited; I wouldn’t have recognized a lot of issues that were treated by my specialists.
7. Take your medications when they’re ordered. Do not skip unless your medical provider agrees. Trust me on this.
8. Do not hire and pay medical workers insane amounts of money to turn around and ignore their advice. webMD is a tool. Honestly, as a nurse, I’ll admit, when a patient says they’ve “done some research and WebMD says…” I cringe and know I have to spend the next two hours of my life explaining anatomy, physiology, pathophysiology, pharmacodynamics, pharmacokinetics, and why it’s wise to take the path the licensed medical professional team has chosen.
Side note: Do NOT drink your own piss for a cure because someone on Facebook Research told you it worked for them. Just because someone has a degree does not make them intelligent. Get an EXPERIENCED medical TEAM.
9. Practice self care. I prayed, studied and meditated. Your days will pass more quickly if you put your thoughts and focus on achieving a goal, rather than thinking “I’m trying to survive.”
10. Don’t punish the ones you love. YES, it’s frustrating to be ill for a long period of time. Pregnancy is 40 weeks on average, recovery is 8–12 weeks for NORMAL birth, a complicated pregnancy may result a loss of a year or more of your life. Screaming, yelling, picking fights, blaming, bullying, arguing, shaming, giving guilt trips, or other forms of ‘punishment’ towards anyone taking care of you will not be in your best interests.
11. Treat your depression. If you’re vomiting “your life away”, you’re sad. It’s okay. Just ask for help. Don’t get it? Keep asking. You’re not alone. Find that person who has time for you. Sometimes, it just takes a little searching on your end. You’re a survivor and you made it this far… if you need someone to carry you to the finish line, that’s OKAY.
I luckily had 4 friends and a supportive partner. I love you, Kurt, Krystina, Allen, Richard, & Fortune. They were my depression medication, but you may need more. There’s also no shame in this. I’m currently taking an antidepressant. I have an online following of 35k. I posted a ‘10 year challenge’ photo and got a backlash of nasty comments on my ‘eating disorder’. My inbox FILLED with people making hateful, hurtful comments. My career suffered, I got extremely upset and I told my doctor I needed something short term to help with the sadness this disease causes. Remember these things when facing depression: there’s no shame, it’s only temporary, there’s help, happy pills are nice; if you don’t agree, take 40 or take your opinion to someone that’s asking for it. Just say’n… they don’t pay your bills…
LASTLY
12. Keep Calm and…… The only goal is to see the face of your healthy child. That, in itself is a worrisome process for a healthy mother, add Hyperemesis gravidarum and it’s a freaking ‘Freddy Krueger’-nightmare of epic portions.
I know this is cliche, and I HATE cliches… but keep calm and take a deep breath. It’s going to be okay.
You’ve already thought about losing that child, or you may have already lost one, two, three…
There’s a magnitude of failure with Hyperemesis gravidarum no words can express. Further, there is no tool in existence to measure the depth of agony the soul exerts when a parent loses a child. Please know, calmness of the heart and mind will ease pain just long enough to get to the next moment.
You may find breathing and remaining calm are the only things you can control. This is a good thing. Meditate and be appreciative of each nanosecond. Concentrate on blesses. Bask in the idea of not being in control of this. It’s not ALL bad, even if that’s difficult to see.
Remember; Figuring out how to secure the rest of your basic needs may be a challenge, but you always have control over “taking a step back” and breathing.
In nursing school, my instructor once told me ‘Just Breathe. If you're breathing, you’re in a better position than a lot of people. If you’re anxious, just focus on breathing.”
Thank you for reading. I wish you a pregnancy of epic amounts of food, no puking, healthy weight gains, great health and beautiful babies.
I know all you Hyperemesis gravidarum ladies have been waiting for me to say it…. I WILL STRANGLE YOU WITH YOUR STUPID SEA BANDS! I BARFED YOUR CRACKERS UP, WHILE PEEING MYSELF! AND IF I HAVE TO TELL YOU ONE MORE TIME GINGER DOES NOT HELP, I WILL DROWN YOU IN ALL THE POSITIVE THOUGHTS & PRAYERS I’M GETTING!
Call to Action.
Are you an Hyperemesis gravidarum sufferer? Have a friend or family member that is?
Are you fighting for health and family?
- I’d love to hear your story.
- Can you relate?
- Did your doctor tell you Hyperemesis gravidarum wasn’t “that bad?”
- How do you feel when other women post their ‘belly’ photos, or talk about ‘morning sickness’ /smackshead
