Hyperemesis Australia | Community organisation

Hyperemesis Australia

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25.01.2022 I *really* related to this post by @thebirdspapaya on the expectation that a mother’s love for her child begins at conception. Love, in any other relationship, is allowed to be so much more complicated than that. We give ourselves time to fall in love with everyone else in our lives - but pregnancy is supposed to be the exception. And for many women it is - but for some of us, our journey to and/or through pregnancy is too complex to allow us to flip the love switch. We know ...we will love these babies, we know that there is nothing we won’t do for them. But while they’re still inside and sucking the very life from us it can be too much to say we love them. It can be too big an ask of us to associate only positive emotions with this baby and this time. And I think the struggles we all face as NVP and HG mamas earn us the grace to say - we will love you when we meet you baby, but right now it’s hard #Repost @thebirdspapaya with @get_repost I knew I loved you before I met you. Except. That feels so far and away. So I will continue to sacrifice my body, my life, my emotions. I will show up in love, far before the feeling will meet me there. I will be your carrier. I will share this space and this journey with you. Walking through this adventure together, tethered as one. We may not have communication or physical touch. But through this, we will get to know each other. After this, we will meet. I know I’ll love you, with every inch of how I’m meant to, when I meet you.

25.01.2022 On this day last year the HGA website went live. I’m so proud of the community we’ve built together this last twelve months and can’t wait to see what the future brings. Thank you all for your support and for making this club - that none of us wanted to join - such a special place to be.

25.01.2022 The survey we've been working on with The Adelaide University's Robinson Research Institute is finally ready! Thank you to everyone who participated in the interview phase - your experiences helped the researchers to develop these questions. We would love you all to complete the survey and take your opportunity to help shape the future of treating HG and NVP in Australia. Access the survey at the link below - it will take approximately 15-30 minutes and is completely anonymo...us. If you would like more information about the study or have any questions, please contact Dr Luke Grzeskowiak @ [email protected] This study has been approved by the University of Adelaide Human Research Ethics Committee (Study ref: H-2020-090)

24.01.2022 The very clever @hannahgoding_doula nails it with this clip. Choosing your care provider is vitally important in any pregnancy - but especially so in a complicated pregnancy, like one involving HG. About four weeks ago I made the decision to move away from public care through my local hospital’s midwifery model. This was the system I used for my first baby, and while I can’t fault anyone involved, the one-size-fits-all approach of public care just wasn’t enough for me this t...ime around. I’ve since moved to a private obstetrician who I see fortnightly. I feel much more in control, my mental health is improving slowly and I know that when the time is right I will be in control of conversations about how I want to wrap up this pregnancy. I feel incredibly lucky to live in a country where exceptional maternity care is offered free of charge. I’ve had wonderful experiences with the public hospital - where I will still deliver and go weekly for fluids - and the midwives and doctors who work there. But I needed a little bit more oversight and, as I’ve already said several times in this post, control! So many of us don’t have the choice to opt for private care - but you still have the power to decide who cares for you. If you aren’t comfortable with the midwife or doctor you’ve been assigned, if you have a bad interaction with someone, if you feel unheard or dismissed - you don’t have to put up and shut up. Use your voice, advocate for yourself and demand better. If you ever need help or advice on how to do this - or even a little pep talk to hype you up - please send me an email so I can cheer you on

23.01.2022 Happy Mother’s Day to all you amazing women who have fought so hard to bring your babes into the world. If today is complex for you, tinged with grief or sadness or longing, I am holding you in my heart. To all the mums battling through the fog of HG right now, this time next year will be better - hang onto that tiny light at the end of the tunnel. You can do it

22.01.2022 Very exciting news to be able to share today! The NSW Government has announced that $17 million will be invested in education, research and practical support for women and their families living with NVP and HG. We can’t wait to see where this investment leads us and what the future holds.

21.01.2022 The very clever @coreandfloorrestore has just released some new perinatal mental health resources. We know that at least 50% of mothers who experience HG or NVP go on to develop PND or PNA so this is absolutely vital support. I definitely recommend following this account - while I’ve been too sick to move my body at all this pregnancy (does bed to couch count?) I plan on using her program postpartum to nurture my poor pelvic floor.

20.01.2022 If you missed out on the premiere of Sick or just want to watch it again you can find it at the link below. Please share it far and wide!

20.01.2022 Celebrating hitting 30 WEEKS with the best drink ever invented - Maccas frozen coke here’s to being 75% cooked and with only about 10 weeks of vomiting left!

19.01.2022 A little more coverage on today’s exciting announcement from the NSW Government and NSW health. The future is bright! Thank you 7NEWS Sydney

19.01.2022 After a few particularly violent vomiting episodes last night my nose was bleeding, my throat was bleeding - and my face was bleeding. See all the red dots on my face? They look like problem skin - but surprise! BROKEN BLOOD VESSELS! This is something super common for HG mums, and is caused by the violent nature of spew attacks. All the force your body uses to expel that measly piece of toast you just ate winds up wreaking havoc on your poor face. This is the worst I’ve had... it but last night was *rough*. I usually get them around my eyes and eyelids where there a lot more blood vessels than elsewhere on the face. Today I have them from my hairline right down under my chin. My mum cries every time she looks at me - I’m sure it’s because it breaks her heart and not because I look like an extra in a zombie film If you’ve experienced broken blood vessels just know that they are normal and not doing any harm. There’s not much you can do to clear them up - so be kind to yourself when you walk past a mirror or other reflective surface. Bloody noses and torn throats are also common side effects of violent vomiting but as with everything - if you’re worried about bleeding please go to the hospital or the doctor. Better a false alarm than sitting at home when you really need help.

18.01.2022 It’s International Hyperemesis Gravidarum Awareness Day WEEK! How exciting - and there’s a few good things in the diary to celebrate. If you haven’t already, make sure you RSVP to the event page so you’re kept up to date with what’s happening and when

17.01.2022 If any Victorian mamas need a bit of extra support at the moment please get in touch @beckfeiner_illustrations

15.01.2022 Sometimes I forget to take my own advice. Sometimes I’m too tired to do the right thing. Sometimes staying in bed is easier than taking proper care of myself. And then sometimes I make the effort to go in for a few bags of fluids and remember how bloody good it feels to be hydrated and I want to smack myself for being so cavalier with my health. There’s no such thing as too hydrated - but it’s very easy to be dehydrated and not realise it. So, do what I say and not what I do - go for fluids at the first inkling of dehydration. You will never regret it and you will feel so much better for it.

15.01.2022 Let’s talk PUQE-24 scores! Have you ever been asked these questions in order to determine the severity of your NVP or HG? The resulting score can help decide on the best course of treatment and hopefully give you some relief. It can also be a helpful way to see if your condition is getting worse, better or staying the same. Try keeping a track of your scores over a few days to discuss with your doctor.

15.01.2022 Thank you to everyone who has already generously donated - I am so grateful! Every little bit helps so please consider making a small donation so our work can continue into 2021 and beyond. Even the cost of your daily coffee would make a difference.

12.01.2022 You may have noticed it's been pretty quiet here at HGA the last few months. There's good news and bad news - and it all adds up to the same piece of news. I am pregnant with HG baby number two - I've just hit the second trimester and already it feels like I've been pregnant for 700 years. It's been a long few months of hospital visits, bruised arms and a rigid schedule of meds. I've learnt a lot, that I hope will improve the work of HGA in the long run. I'm sorry if you've e...mailed or DM'd and it's taken me a while to get back to you. I'm sorry for being absent from social media when so many of you are pregnant and looking for a little light or hope or understanding. At the moment I'm prioritising putting what little energy I have into the emails and DMs I receive (though I'm often slower to reply than I'd like to be) so things will remain quiet on social media for the time being. Once this baby is outta me and happily living earthside it'll be back to business as usual for HGA with even more learnings under my belt and more plans for how to improve the lives of Australian mums. Thank you for your support and patience while I navigate HG hell again - I'm thinking of you all in it with me and I think you're amazing See more

12.01.2022 I’d like to highlight the official national treatment guidelines for NVP and HG. The Society of Obstetric Medicine of Australia and New Zealand wrote and published these in 2019 to ensure a high standard of care for all women suffering from NVP and HG in ANZ. All the information provided by HGA, whether via our website, social media or through 1:1 communication is based on these recommendations. They can be accessed via our website or directly through the SOMANZ website - I’l...l provide links to both in our bio. Being familiar with these guidelines and taking them to your primary care provider is the best way to get the treatment you need and deserve. I absolutely believe social media plays a crucial role for women struggling with NVP and HG. It is so important to feel connected to other women, to see your experience reflected by the people you follow and to feel that you are not alone. The online HG community is an amazing source of support, wisdom and experience for so many women - including myself. But it’s *equally* important to remember that social media is not the place to seek medical advice. Having lived experience and a large social media following does not make you an expert in HG (or any medical condition), and seeking medical advice from someone because they have a blue tick should not replace seeking information from charities, peak bodies and government websites - especially when it comes to using medication. All women suffering from NVP and HG should have access to reputable and useable resources that will be taken seriously and enacted by health care providers. Storytelling and experience sharing will always have a place in treating and supporting women living with NVP and HG - but can never replace accurate and official resources.

11.01.2022 A few months ago, the perinatal psychiatrist I saw during my first pregnancy, contacted me after hearing I was pregnant for a second time. We were discussing the kind of support I thought I might need this time around - and even though I was just 5 weeks pregnant and not quite sick yet, I knew I needed to prepare for the mental fuckery of HG as thoroughly as I was preparing for the physical. I told her I was anxious - about what was to come; about being as sick as I was last ...time; about being sicker than last time; about being completely incapacitated; about losing work and my business; about the impact on the charity and the women who rely on it; about the impact on my husband, daughter, parents and friends; about being sick in public; about the damage to my teeth and body; about it all. She paused and said ‘of course you feel anxious about those things, because all of those things are going to happen. Anxiety is so often about managing stress and fear related to things that may never happen. It’s an overactive mind creating problems where problems may not exist. But in your situation everything you are afraid of will come to pass. You will vomit in front of a stranger. Your daughter will miss you. Your teeth with suffer and you will lose your livelihood. You are allowed to be afraid of a scary reality.’ It was so comforting and validating to hear someone tell me that it wasn’t all in my head. That I had every right to be afraid of what was to come because it was very bloody scary. And knowing that it wasn’t made up, that I didn’t have to talk myself out of feeling that anxiety and fear freed me to actually deal with it. Give yourself permission to acknowledge that HG and NVP are bloody terrifying. There is a lot at stake for you and the people who love and rely on you. A lot will be lost - but ultimately a lot will be gained. Instead of trying to convince yourself that you’re okay, it’s not as bad as it seems, other people have it worse or whatever story you’re telling yourself to invalidate your feelings - use that energy to give yourself a break, acknowledge the harsh reality of what you’re being put through and be kind to yourself cont in comments

10.01.2022 We are so proud to be part of this amazing international network of organisations

10.01.2022 [ONE WEEK] This time next week it's International Hyperemesis Gravidarum Awareness Day. Which means the wait to see this incredible documentary is almost over. Tune in at 7pm AEST on Friday 15 May to watch the premiere of @the_sick_film. I saw a small snippet at the ICHG conference last October and it had me in tears. It's incredibly powerful and sheds a light on what we all go through like nothing ever has before. Please RSVP to the event below to get updated. https://www.facebook.com/events/967242653717815/

09.01.2022 I wanted to share this new research from our friends at Hyperemesis Education & Research - HER Foundation and Caitlin Dean, HG Nurse Specialist and Researcher has provided the following summation of why this research is so important: This research highlights just how serious HG is and the need for treating symptoms effectively to prevent malnutrition and dehydration. Women don't choose to have HG or to be malnourished in pregnancy, it is a severe complication of pregnancy wh...ich needs treatment. To make informed decisions on what treatments are appropriate both the risks and BENEFITS of treatment must be weighed up. To do that we have to fully understand the consequences of NOT treating. This research helps us to build that picture and shows that the potential risks associated with taking the medications currently on national guidelines are massively outweighed by the potential benefits. We have to do away with the old myth that "the baby is tiny and takes what it needs from mum so even though mum is suffering, HG doesn't harm the baby". We can see from this that there are potential life long consequences from exposure to HG, or rather the malnutrition it causes. We don't have a cure for hG yet but we do have effective treatments to manage symptoms and reduce the malnutrition and weight loss and therefore hopefully mitigate these risks. If you have any questions about this research, your treatment or anything relating to your experiences with HG please get in touch!

06.01.2022 Today is International Hyperemesis Gravidarum Awareness Day - and to celebrate I commissioned this amazing piece of art from @ailiebanks. When I was briefing Ailie about what I wanted the piece to look like, I wanted to make sure that I honoured the inner strength all HG mums possess - though we may be stuck on the floor by the toilet, being sustained by prescription meds and frozen coke, our bodies and souls beaten down, we're still the strongest of the strong. We're #strong...asamother and there's so much beauty in that. You are able to purchase a beautiful A4 print of this illustration to have as your own special reminder of your strength - head to the HGA website for more information. All proceeds from the sale of these prints will go back into supporting the work of HGA. The international theme for #HGAD2020 is #raiseyourvoice to encourage all the women who have lived through this terrible condition to share their stories to help create awareness. Take some time today to share your story with us - comment below, create your own post or share something in your stories. Please tag @hyperemesisaustralia and use #HGAD2020 so I can keep track of them and share them here.

03.01.2022 Only one hour until the Sick film premiere! Can’t wait for you all to see it!

02.01.2022 Still here! I’ve been trying to write my 20-week update for three weeks so now it’s a 23-week update! Words generally come easily to me (I’ve made a living writing for other people so you’d hope so) but at the moment my brain is fried so here’s a little list of what the last 20 weeks have entailed: three times weekly fluids; ondansetron; doxylamine; rabeprazole; sertraline; steroids; a failed PICC line; nerve damage and a blood clot in my arm from said PICC line; blood thinn...ers; a suspected clot in my lungs; two chest x-rays; a CT scan; a slow fluid leak scare; constant Braxton Hicks from 15-weeks. Plus, the constant nausea and frequent vomiting! It’s been a hard slog and I’m exhausted - but I feel like I’ve settled into a little routine now. I have the meds that I know work, I sleep a lot and have the most amazing support team who ensure I don’t have to worry about anything but resting and being horizontal. The most difficult aspect has been the amount of time I’ve had to spend away from my two year old. The guilt is extreme, and my heart feels like it’s caught mid-break every second. But I know that this is a temporary sacrifice for us both and it’s for a great reward - a brother for her to terrorise for the rest of her life. Thank you to all of you amazing women who are constantly checking up on me. I’m thinking of you all and can’t wait for this to be over so that I can come back to you at full strength See more

02.01.2022 While 2020 has definitely been weird and challenging it's also been a huge year for HGA. We've been able to help so many amazing women navigate difficult pregnancies, supporting them through sickness and into early motherhood. The work we do at HGA is only possible because of the generous donations of people like you. We receive no government or private funding and so our future is entirely dependent on continued donations from kind strangers. If you or someone you love has been supported by HGA - or you've otherwise been touched by pregnancy sickness and wish to support the work we do - please consider making a donation to our organisation.

02.01.2022 I have to admit I’m having a bit of a wobble. I had a very deflating midwife appointment last week (baby is perfect - deflation is all mine) and with pregnancy insomnia kicking in hard everything is just feeling too much. I’ve done it before so I know it’s all worth it, that I won’t have to mother my daughter from bed forever, and that I’ll be happy again - but today is a wobble and it felt important to acknowledge that