Category: meniere’s daily journal

Ménière’s Woman – when life gives you lemons

.Reading time 7 minutes.

They say when life gives you lemons, make lemonade.

“They” obviously don’t have Ménière’s disease, or any other incurable, debilitating, life changing disease for that matter. If they did, they would say, ‘I’m sorry about your diagnosis. I hope a cure comes soon. Let me know if you ever need help with anything.’

I want to say that I am sorry that you have Ménière’s disease.

I wouldn’t wish it on my worst enemy. I have had it since I was twenty-nine.

I woke at 5am one morning in early January, 2024, with the words Ménière’s Man stuck in my head. It’s a book written about Ménière’s disease, by a man. I’ve never read it. But I know that people are thankful for the information inside it.

Then I thought, where are the Ménière’s books written by women? There aren’t many.

How about WOMénière’s? WOménière’s? woMénière’s?

Sure, you may be able to glean lots of interesting information from books written by men, but let’s face it, they don’t deal with holding the responsibility of keeping the household going like women do (mostly) – groceries, cooking, cleaning, childcare (if you do have a partner who helps you with that, you are truly blessed!).

Men don’t deal with menstruation and everything that entails.

Men don’t have babies.

Men don’t go through perimenopause and menopause.

Men don’t have the fluctuations with hormones like women do.

We women have the rough end of the stick when it comes to Ménière’s !

Researchers have uncovered countless ways in which women’s and men’s bodies react differently to the same diseases, due to our hormones. There is A LOT that female bodies go through during a hormonal cycle, a stark contrast to the experience of the male body.

And so it began.

I accepted my own challenge to write a book about Ménière’s disease for women, and started on it. I figured that I was more than qualified enough to write it, Ménière’s being with me for 29 years at the time of writing this book. Exactly half of my lifetime.  

Mum of three. My Ménière’s started the year before my first was born.

Wife.

Teacher.

Ménière’s Research subject at the University of Queensland’s  Mind and Brain Institute.

Gentamicin to destroy the vertigo after 9 years of trying prescription medicines, herbal medicines and other alternative treatments.

Cochlear Implant to restore hearing.

Ménière’s Research Australia Ambassador who sits in on Teams meeting with Ménière’s researchers in Australia.

It was my honour to pen this book to help others. To describe the road travelled before others going through the same things.

To encourage.

To understand.

To give insight.

To give tips on surviving the Meniere’s jungle.

To say it’s okay. We’re in this together. You’re going to make it through.

To give hope.

I have put countless hours of medical research into Meniere’s Woman, and reading  anecdotal stories by women and questions they ask on social media.

Plus my own experience.

It’s time to honor us. Women with Ménière’s .

On the pages you’ll find tips, hints, research, personal anecdotes, secret women’s business, pregnancy, motherhood, grand-motherhood, understanding, inspiration and mindset, self-care, a period and Meniere’s symptoms tracker and a Ménière’s Management Plan, plus lots more.

And because this is your book, add your own stamp and style. I have left blank pages for your to glue/tape in clippings, inspirational verses or images that speak to you in some way, or write them in. Be creative. Be you.

Here’s a peek at inside the book. Ménière’s Woman. Honoring you. xx

You can grab a print copy at any online bookstore. But here it is at Amazon if that is easier for you: https://www.amazon.com.au/M%C3%A9ni%C3%A8res-Woman-when-gives-lemons/dp/0645158194/

The eBook is ready for a 1st March release on Amazon: https://www.amazon.com.au/M%C3%A9ni%C3%A8res-Woman-when-gives-lemons-ebook/dp/B0CV74SZDM/

Profits from the eBook and Print book will be donated to Ménière’s research, as all of my Ménière’s books are. I don’t publish Ménière’s books for personal gain, but to help others.

Let me know what you think of the book if you purchase a copy. And, I hope that it helps you beyond what you thought it could. xx

Julieann Wallace is a multi-published author and artist. When she is not disappearing into her imaginary worlds as Julieann Wallace – children’s author, or as Amelia Grace – fiction novelist, she is working as a secondary teacher. Julieann’s 7th novel with a main character with Meniere’s disease—‘The Colour of Broken’—written under her pen name of Amelia Grace, was #1 on Amazon in its category a number of times, and was longlisted in 2021 and 2022, to be made into a movie or TV series by Screen Queensland, Australia. She donates profits from her books to Meniere’s Research, to help find a cure or successful treatment for everyone. Julieann is a self-confessed tea ninja and Cadbury chocoholic, has a passion for music and art, and tries not to scare her cat, Claude Monet, with her terrible cello playing.

Julieann Wallace ~ author julieannwallaceauthor.com

www.instagram.com/myshadow_menieres/

www.instagram.com/julieann_wallace_

Meniere’s Quality of Life …

.Reading time 8 minutes.

6 days from death.

That’s the quality of life for a person with Meniere’s disease during an active vertigo attack. It’s been compared to someone who is 6 days from death by authors of this study – Meniere’s Quality of Life.

The study revealed the following:

— QWB scores: Meniere’s patients achieved a mean score of .505 on days of acute episodes and .620 on days without acute episodes. This compares with scores of normal adults (.810), very ill adults with life-threatening illness (cancer, AIDS (.616), non-institutionalized Alzheimer’s patients (.506), and AIDS & cancer patients, six days before death (.427)

https://www.newswise.com/articles/menieres-disease-quality-of-life?fbclid=IwAR1famOiDWiOqelzP99ONe8FuquAWbhaXNyyumhD3b40u8Qbg1TAZGCi8Zw

Earlier in my Meniere’s journey, I had read online that a doctor claimed it was 3 days from death …

My husband flinched when I quoted him those words. 40 + violent vertigo attacks year, each one lasting around 4 hours. Unable to move. Staring at one spot on the wall for the entire time. He was the spectator to my sad life with Meniere’s that pulled me into the darkest pit.

Nausea. Puking. Unbearable. Feeling like I am close to death. And doing that 40 + times a year.

6 days from death. Let that sink in.

Do you ever read something that hits you in the gut? Something so well written it describes your invisible symptoms so that others might understand it better.

Dear MONSTER, written by Colin (The Monster Meniere’s) does that. It’s from a book about to be released on June 1st 2023 Dear Meniere’s – letters and art – a collection.

Dear MONSTER,

You are …

AKIN TO SHIT on a shoe trodden through a carpeted home,

A 6 HOUR LONG podcast with a voice so monotone.

Like riding a bike with a constantly falling off chain,

A summer garden party that is RUINED BY THE RAIN.

The spilt glass of water that calculatedly covers one’s crotch,

Like paying for Netflix then discovering there’s barely anything good to watch.

The SOGGY WET SOCK and also the HOLE IN THE BOOT,

Like discovering HALF A WORM after biting into some fruit.

A SALT AND VINEGAR CHIP on a fresh paper cut thumb,

The APPROACHING BEAST IN THOSE NIGHTMARES where we are unable to run.

Truth is, you are SO MUCH WORSE than all these examples by a mile,

This is me keeping it light, and trying my damn hardest to CREATE A SMILE.

Colin (That Monster Ménière’s)

Diagnosed, 2019

Instagram: @that_monster_menieres

This is Meniere’s disease. Vertigo. Hearing loss. Tinnitus. Brain fog. Debilitating. Life changing.

Meniere’s disease is said to be about the same prevalence as Multiple Sclerosis in the community, and yet, there is no funding for research, nor fundraising days in the community to bring awareness. Our medications (if they work) are costly and are not subsidised. Many people with Meniere’s cannot work due to unpredictable, long, violent vertigo episodes that leave them exhausted, causing them to lose their livelihoods, their confidence, their sense of self-worth.

6 days from death. Let that sink in.

It has been said that Meniere’s disease is the most livable disease with the highest suicide rate. If you’ve ever been in Meniere’s FB groups, you will read posts about people wanting to end their suffering. You will see others reaching out to them to help. Just one more day ….

I’ve had MD for 28 years now. How can I sit back and hope for the best for my MD family without doing anything?  

It’s like wondering why nothing good ever happens to me.

It’s like waiting for others to act, and then nobody does, because they are all waiting for others to step up for them.

Here’s the thing. You have to go out and grab opportunities.

You have to make things happen.

It’s active. Not passive.

SO here’s my active for my Meniere’s brothers and sisters, uncles and aunts, kids, friends, and that person down the street.

It’s time to give hope. It’s time to support our Meniere’s researchers to help us. Thanks to Anne Elias (Sydney Meniere’s Support Group https://www.instagram.com/menieres_support_au/), Heather Davies (Meniere’s Muse https://www.instagram.com/menieresmuse/) and Steven Schwier (On the Vertigo https://www.instagram.com/onthevertigo/)for helping with the campaign.

A global fundraiser – #menieresresearchgivingday  MAY 8

https://gofund.me/8a8b656b

It’s an I see you. I hear you. Let’s help.

Can you spare a dollar or two?

Give together. Give hope. Help a mate.

Julieann Wallace is a multi-published author and artist. When she is not disappearing into her imaginary worlds as Julieann Wallace – children’s author, or as Amelia Grace – fiction novelist, she is working as a secondary teacher. Julieann’s 7th novel with a main character with Meniere’s disease—‘The Colour of Broken’—written under her pen name of Amelia Grace, was #1 on Amazon in its category a number of times, and was longlisted in 2021 and 2022, to be made into a movie or TV series by Screen Queensland, Australia. She donates profits from her books to Meniere’s Research Australia, where they are researching Meniere’s disease to find a cure. Julieann is a self-confessed tea ninja and Cadbury chocoholic, has a passion for music and art, and tries not to scare her cat, Claude Monet, with her terrible cello playing.

Julieann Wallace ~ author (julieannwallaceauthor.com)

https://www.instagram.com/myshadow_menieres/

https://www.instagram.com/julieann_wallace_author/

Julieann is mindful of those who also have incurable diseases or are walking on the path of a diagnosis that is life changing. She never aims to undermine the severity of anyone else’s illness, disability or journey. We all deal with life with different tolerances, attitudes and thresholds.

Be kind. Always.

Dear Meniere’s …

.Reading time 5 minutes.

Dear Meniere’s,

Just writing to let you know that your time is limited. A cure is coming. You stole pieces of us, and we want it all back.

Never yours,

Julieann

1am.

Hello world. Not sleeping!!! Tossing and turning.

My mind is stuck on writing letters. My mind is obsessing with writing a letter to Meniere’s disease to tell it what I think …

Dear Meniere’s,

Dear Vertigo,

Dear Left Ear,

Dear Hearing Loss,

Dear Brain Fog … wait … is that brain fog (shakes head), what was I thinking again?

Dear Ear Fullness,

Dear TINNITUSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSSS!

Dear Me Before Meniere’s Disease,

To My Dear Children, I’m sorry …

Dear, Dear Meniere’s Disease, we have to talk …

I feel like going to the window, opening it and yelling out to the neighbourhood, ‘I’m awake, everyone! I think I’m going crazy!’

We need a cure. We need a cure.

Except, we need money to fund the researchers …

Could we create a book of letters to Meniere’s and donate the money to research?

Could we use the book to show doctors and ENTs and disbelieving friends and family what we go through?

Could the book be used when applying for disability support so they can truly understand?

And then I’m scrolling through Meniere’s social media groups.

Symptoms.

Frustrations.

Hopelessness.

Despair.

HELP!!!!!!!!!!!!!!!!!!!!!

Misery dripping from every word of a life lived with Meniere’s.

I feel like crying.

I have to get off Facebook for a while before it pulls me back to the dark abyss of Meniere’s.

I close my eyes and take a deep, calming breath.

It’s time to create the Letters to Meniere’s book. I’m stepping up awareness for Meniere’s disease, and seeking revenge by creating a satisfying book of Letters to Meniere’s, written by the people who live with the condition.

Yep. Let’s do this!

Gather a team of inspiring Meniere’s Ninjas to help bring the book to fruition. CHECK

Lilly Pilly Publishing on board for book design, format and printing. CHECK

Call out for submissions created CHECK

Time to spread the word.

Please join the Meniere’s community as we write letters to Meniere’s disease. We’d love for you to share your story, or, a story, through a letter. Sign your letter off with your first name, or a fictional name. Go to https://www.lillypillypublishing.com/letterstomenieresproject for more information and guidelines. Profits will be donated to Meniere’s research.  

Let’s laugh together, cry together, and … understand. That’s what our letters and artwork will do. That’s what we can do. It takes a village.

We’re on a mission. A terribly important mission.

Dear Meniere’s,

Imagine a world where Meniere’s disease, that’s you, has been eradicated …

https://www.julieannwallaceauthor.com/

https://www.instagram.com/julieann_wallace_author/

https://www.instagram.com/myshadow_menieres/

Julieann Wallace is a multi-published author and artist. When she is not disappearing into her imaginary worlds as Julieann Wallace – children’s author, or as Amelia Grace – fiction novelist, she is working as a secondary teacher. Julieann’s 7th novel with a main character with Meniere’s disease—‘The Colour of Broken’—written under her pen name of Amelia Grace, was #1 on Amazon in its category a number of times, and was longlisted in 2021 and 2022, to be made into a movie or TV series by Screen Queensland, Australia. She donates profits from her books to Macquarie University, where they are researching Meniere’s disease to find a cure. Julieann is a self-confessed tea ninja and Cadbury chocoholic, has a passion for music and art, and tries not to scare her cat, Claude Monet, with her terrible cello playing.

A FREE Meniere’s Daily Journal for 2021

.Reading time 2 minutes.

Happy 2021!

To welcome in the new year for my Meniere’s family and friends, here’s a free PDF of the Daily Meniere’s Journal I created in 2020. It’s for those who haven’t seen it before, are new to Meniere’s (i.m so sorry), or just need something like this to keep track of their day to day Meniere’s.

It’s a valuable tool to take to your doctor to show them your symptoms and how you are feeling everyday. I know there are people who bought the journal in 2020, and have already purchased another one for 2021.

Print the PDF out day by day, or month by month – however you want to use it. And you have permission to share it with others. I hope it helps you to find patterns or triggers so you can manage the horrendous Meniere’s disease a little better.

daily-menieres-journal-free-to-downloadDownload

The print book if you would prefer – Amazon.com: Daily Meniere’s Journal (9780648424451): Wallace, Julieann: Books

Julieann is a multi-published author and artist. When she is not disappearing into her imaginary worlds as Julieann Wallace – children’s author, or as Amelia Grace – fiction novelist, she is working as a secondary teacher, editor, book designer, and book magician for other authors. Julieann’s 7th novel with a main character with Meniere’s disease—‘The Colour of Broken’—written under her pen name of Amelia Grace, hit #1 on Amazon in its category twice. Julieann is a self-confessed tea ninja and Cadbury chocoholic, has a passion for music and art, and tries not to scare her cat, Claude Monet, with her terrible cello playing.

The Color of Broken: Grace, Amelia: 9780648084662: Amazon.com: Books

It’s My Life, My Illness … Please Let Me Choose My Treatment

.Reading time 12 minutes.

‘I’m sorry. There is no cure.’

I die a little inside each time I hear someone with Meniere’s disease pleading for help, saying they can’t do it anymore, and when I hear the callout for prayer for someone who is suicidal from the insidious incurable disease … I’ve been there. I know exactly how it feels. I wish I had a magic wand to heal every one of us. Right now.

I get angry when I read Meniere’s patients being told by their doctors, ‘I’m sorry. There is nothing more we can do.’

Don’t accept it. There is more that can be done.

But … it also depends on what you are willing to do.

Let me tell you the short story of my journey.

1995 …

‘I’m sorry. There is no cure.’

‘No cure?’

‘No … no cure; no cause. But you’re not going to die from it.’ My ear specialist eyed me with caution. The bitterness of my diagnosis after five hours of testing was painful to acknowledge.  

‘Let’s wait and see how your symptoms go,’ he said.

I stepped out of the ENT’s office, trailed by a very dark shadow: Meniere’s disease. It was so large it cast a darkness over me like a heavy, storm cloud, ready to erupt into the strong spiralling wind of a hurricane or cyclone at any moment. I knew the symptoms of my diagnosis well. I lived them with every breath that I took, mixed with fear and anxiety: aural fullness, hearing loss, tinnitus, and vertigo – the abhorrent violent vertigo – a life changer. 

I felt like I was given a prison sentence.

Where was the key to escape from Meniere’s disease? 

Wait and see how my symptoms go? Why? It could be a mild form that had little impact on my life, or it could go into remission.

But mine didn’t.

Thank you to the creator of this list.

After return visits to my ENT I was given a diuretic and Stemetil. That was it. And that was all they had in 1996. End of story.

But was it?

As my Meniere’s disease kicked into overdrive, destroying every bit of happiness I had in my life, the worst my ENT had seen, I got up to fight. Life was brutally unfair. Why was Meniere’s disease even a thing? It’s so cruel.

I was angry. I wasn’t going to accept “there’s no more we can do”. So I took control.

1. I started journaling my lifestyle vertigo attacks – what I did, ate, or drank beforehand an episode, trying to find a trigger or a pattern – and I discovered one – every two months I would have four hours of violent vertigo for nine days in a fortnight. Sometimes ending up in hospital.

2. I started my own research online when we finally had a home computer.

3. I researched and tried natural therapies.

4. I tried acupuncture.

5. I had my jaw alignment checked for TMJ (temporomandibular joint).

6. I listened to sound therapy for months on end – the Tomatis effect.

7. I took my research to my ENT, every visit. I’m sure he let out a sigh every time he saw my name on his patient list for the day. And when I found a Japanese doctor who claimed that the anti-viral Acyclovir cured people of their Meniere’s disease, my ENT was doubtful, but told me to give it a go. It cost me around $375 for each script from my GP – and that’s another story. It didn’t work.

8. I tried Serc.

But still, the debilitating vertigo rendered me defenceless. Incapacitated. And mentally, I found myself at the bottom of the darkest abyss with no hope, wearing a mask with a smile, covering up my very, very deep and dark depression.  

2004 …

9. I tried prednisone. For one day I felt like a normal person. And then my vertigo returned.

10. I had a grommet inserted into my eardrum. It did nothing.

The doctor’s words were full of apology. And frustration. ‘I’m sorry. There is nothing more we can do.’

‘Nothing more?’ My heart sunk. There was no horizon of hope, like the sun’s rays projecting onto the twilight canvas. It had disappeared into the darkness. Like me.

Just me and the beast: Meniere’s.

My ENT looked gutted. ‘Well … we could try gentamicin injected into your middle ear, and if that doesn’t work, I can do a vestibular nerve section.’

‘I’ll take the gentamicin.’

‘It will destroy your balance cells. You will also lose some hearing.’

‘Does it stop the vertigo?’

‘It can. Yes.’

‘Then I’ll take the gentamicin.’ I didn’t care about losing more hearing. I couldn’t live with the vertigo. I was done …

2020 …

I’ve been vertigo free since 2004. But the gentamicin injected into my middle ear was not the low dose gentamicin offered now, it was the full strength, and I remember my ENT saying that he added bi-carbonate of soda and sterile water to the mix to make the toxic antibiotic penetrate better. I now have my life back. And my shadow, Meniere’s, is a small thing that follows me around, a reminder that I am a survivor and a fighter.

I have to admit, I’m a little jealous of newly diagnosed Meniere’s people now. You have so much more HOPE than I did when I started my Meniere’s journey 25 years ago. There are far more medications and treatment options and success stories, and support groups and people who have started blogs and websites for MD people.

You have so much more.

And remember, you can choose. Like I did. Make sure you have a supportive ENT. I’m eternally thankful to my ENT and his care and compassion. And now my new ENT for his skill with my Cochlear Implant that has allowed me to hear again after 15 years.

Meniere’s Warriors:

This is your weapon—Research—scour the internet for everything about Meniere’s disease and treatment options. Present them to your ENT. You are your best advocate. It’s your life. You take control.

This is your plan—Trial—approaches and treatments that people are having successes with (after researching – there’s a lot of scammers/snake oil salespeople/quacks out there trying to make money out of our suffering).   

This is your mantra—Never give up and reach out. We’ve got this, together.

Doctors, this is our plea: please let us choose our steps to wellness, to a better life where we can find joy again, where we can take back what Meniere’s disease has taken from us. Please don’t say “there is nothing more you can do”. We have suffered more than enough.

I’m looking forward to the day when I hear: ‘Here’s the bad news. You have Meniere’s disease. Here’s the good news—we can fix it!’’

To help you out in your MD journey, I have a two freebies you can download:

* Meniere’s Checklist of Treatment FREEDownload
* 365 Day Meniere’s Journal to track patterns and triggers FREE Download

The spark of hope can never be extinguished. A cure for Meniere’s disease is coming …

I write this blog with the knowledge of the great diversity of experiences of people with Meniere’s disease in mind. Some suffer greatly. Some little. Some people respond to medications. Some don’t. Some can still function with little disruption to their daily lives. Some don’t.

I also write acknowledge that there are many debilitating incurable illnesses, and I am in not in any way discrediting or minimalizing another person’s illness.

Julieann Wallace is a best-selling author, artist and teacher. She is continually inspired by the gift of imagination, the power of words and the creative arts. She is a self-confessed tea ninja, Cadbury chocoholic, and has a passion for music and art. She raises money to help find a cure for Meniere’s disease, and tries not to scare her cat, Claude Monet, with her terrible cello playing. playing. 

https://www.julieannwallaceauthor.com/

The Colour of Broken is my best-selling novel (written under my pen name) that has a character with Meniere’s disease. It hit #1 on Amazon in it’s category a more than once. It can be bought at any online bookstore, including Amazon.

The Daily Meniere’s Journal is a 365 day print book to record your MD symptoms to find triggers and patterns. It can be bought on any online bookstore, including Amazon.

All profits from these books are donated to Meniere’s research to help find a cure.

I am mindful of those who also have incurable diseases or are walking the path of a diagnosis that is life changing. My blog never aims to undermine the severity of anyone else’s illness, disability or journey. We all deal with life with different tolerances, attitudes and thresholds. ‘My Shadow -Meniere’s’ is my journey. It is my hope that it can help others with Meniere’s disease, or hearing loss, or simply when life has a plot twist.

I also acknowledge those before me, who have Meniere’s Disease or a Cochlear Implant. Your experiences, advice and suggestions are welcome.